It's becoming increasingly hard to go visit with friends. It's just easier to stay home.
I went to visit my best friend. He lives only three miles from me. His wife died a year ago. He and I have one of those "once in a lifetime" friendships that has lasted years. He was my Sergeant at one time, when we were both in law enforcement. Then he and his wife became my pastors. I dare say this man knows me better than anyone in the world and vice versa. His lovely wife died a year ago and I try to get over there several times a week. We discuss and argue the Bible. We tell law enforcement "war stories". We laugh. We plot. I've always been a person who NEVER let anyone see the REAL me. Except this pastor. He's the only person who has ever known the real me, flaws, faults and all. So I value this friendship more than I can tell you. But I hadn't seen him in a couple of weeks. Yesterday's visit was a good example of why it's easier to stay home.
As usual, we sat in the living room and started talking. Alan stayed in a chair for about 15 minutes because George had given his a coke and a couple of cookies. As soon as he finished those, he began to wander, searching for candy to get into. First into the kitchen. I could tell where he spied something.
"Alan stay out of things." He jumped and came back out. Wandering then into another area. "Alan stay out of things." Jump. Came back out. George and I continued visiting. Alan goes back to kitchen. "Alan stay of things." Jump. Wandered back to other area. "Alan leave things alone." While George and I visited, Alan never sat back down but continued wandering between the two rooms. I finally decided it was time to take him home.
Alan is fixated on candy. If he spies any in someone's home, he'll keep on until he gets it. It's worse than a kid. For someone who forgets everything else, he NEVER forgets where he sees candy.
If he can't find candy, he'll wander and get into other things. He has to be watched constantly when we're out. So it's easier to keep him at home where I have things locked up.
It's August and Alan caught me on the computer so he decorated for Christmas again. I went into the living room and my whole fireplace mantle was crammed full of my angel collection, looking like it was a flea market. "Alan get those off of there and put them back on the shelves." At least this time he didn't get the tree up before I caught him.
Obama has failed me. When Alan got on disability, the government removed his medicaid. Now I can't afford to get any respite care. So Alan goes with me. We're divorced and still joined at the hip. He goes to work with me, he visits friends with me and it's now impossible to attend my favorite 12-step meetings, because they keep candy on the tables and there's flaws in the table he can pick at until he digs holes in the table.
It says something for MY character that he doesn't have lumps on his head.
Friday, August 10, 2012
Tuesday, July 24, 2012
ALAN, OPEN THE DAMNED DOOR AND LEAVE THE CAT ALONE!
Anyone who has ever lived with someone who has any form of dementia knows, everyone in the household has to learn to roll with the flow. Objects disappear, only to reappear in weird places some weeks later.
One day it was raining hard outside. I mean a gully washer type of rain. All of a sudden I see a big stream of water flying past my door. Rushing outside, I found Alan, standing in the storm soaking wet, and happily watering the flower beds. The doctors warned his reasoning ability would continue to get worse. Yep, it is. And he can't understand why I took his car keys (to my car yet) away.
Bless his heart, he was never eaten up with horse sense anyway, so I missed that clue.
And sometimes necessity is the mother of invention. Case in point: It's too hot to leave my maine coon cat outside all day. So I leave the sliding door open enough for him to travel in and out at will during the mornings and again in the evening until it gets dark.
Alan never, NEVER EVER, closes a drawer, cabinet door or regular door when he's been in them. However, he can't seem to remember to leave the outside door in MY end of the house open for the cat. Fifteen or twenty times a day I have to say, "Alan open the door back up." All of a sudden he'll get out of a chair and make a dash out the door, only to come back in carrying the cat and shutting the door.
"Alan, open the damned door and leave the cat alone." The cat's used to it so just relaxes and enjoys the ride until Alan puts him down. He thinks it's another great game. Now he won't even come in at night until Alan comes to the deck and carries him back inside.
On the other hand, when we leave I put him in the house and make sure the doors are closed, only to come home and find my sliding door open just enough for him to get out. It's happened so many times now, it has to be the cat.
So Alan is slipping and the cat is getting smarter. Me…I just take my depression pills and my blood pressure pill and try to keep smiling. My mother always cautioned that my face could freeze that way. I wonder if this smile will someday freeze and they'll have to operate to unclench my teeth.
One day it was raining hard outside. I mean a gully washer type of rain. All of a sudden I see a big stream of water flying past my door. Rushing outside, I found Alan, standing in the storm soaking wet, and happily watering the flower beds. The doctors warned his reasoning ability would continue to get worse. Yep, it is. And he can't understand why I took his car keys (to my car yet) away.
Bless his heart, he was never eaten up with horse sense anyway, so I missed that clue.
And sometimes necessity is the mother of invention. Case in point: It's too hot to leave my maine coon cat outside all day. So I leave the sliding door open enough for him to travel in and out at will during the mornings and again in the evening until it gets dark.
Alan never, NEVER EVER, closes a drawer, cabinet door or regular door when he's been in them. However, he can't seem to remember to leave the outside door in MY end of the house open for the cat. Fifteen or twenty times a day I have to say, "Alan open the door back up." All of a sudden he'll get out of a chair and make a dash out the door, only to come back in carrying the cat and shutting the door.
"Alan, open the damned door and leave the cat alone." The cat's used to it so just relaxes and enjoys the ride until Alan puts him down. He thinks it's another great game. Now he won't even come in at night until Alan comes to the deck and carries him back inside.
On the other hand, when we leave I put him in the house and make sure the doors are closed, only to come home and find my sliding door open just enough for him to get out. It's happened so many times now, it has to be the cat.
So Alan is slipping and the cat is getting smarter. Me…I just take my depression pills and my blood pressure pill and try to keep smiling. My mother always cautioned that my face could freeze that way. I wonder if this smile will someday freeze and they'll have to operate to unclench my teeth.
Monday, June 25, 2012
GROUNDBREAKING VACCINE THAT COULD CUT CASES OF ALZHEIMER'S DISEASE BY HALF HAS BEEN DISCOVERED!
An estimated 5.4 million Americans of all ages have Alzheimer’s disease (2011). This figure includes 5.2 million people aged 65 and older and 200,000 individuals under age 65 who have familial or early-onset Alzheimer’s.
Groundbreaking vaccine that could cut cases of Alzheimer's disease by half has been discovered.
The jab developed by scientists in Sweden could delay the onset of the debilitating illness and be the first step towards finding a cure.
Alzheimer's is the most common form of dementia and attacks nerves, brain cells and neurotransmitters that carry messages to and from the brain.
-----snip-----snip----snip Click on the link below to read complete article….snip…
In an accompanying article, Thomas Wisniewski from the New York School of Medicine wrote: 'Development of an immunotherapy that can delay Alzheimer’s disease onset by five years would reduce the prevalence of the disease by half.
'This new vaccine comes as a promising addition to what will probably be a long road to the ultimate successful immunotherapy.'
Read more: http://www.dailymail.co.uk/health/article-2156312/Groundbreaking-Alzheimers-vaccine-cut-cases-half-step-finding-cure.html#ixzz1yovR9d00
Groundbreaking vaccine that could cut cases of Alzheimer's disease by half has been discovered.
The jab developed by scientists in Sweden could delay the onset of the debilitating illness and be the first step towards finding a cure.
Alzheimer's is the most common form of dementia and attacks nerves, brain cells and neurotransmitters that carry messages to and from the brain.
-----snip-----snip----snip Click on the link below to read complete article….snip…
In an accompanying article, Thomas Wisniewski from the New York School of Medicine wrote: 'Development of an immunotherapy that can delay Alzheimer’s disease onset by five years would reduce the prevalence of the disease by half.
'This new vaccine comes as a promising addition to what will probably be a long road to the ultimate successful immunotherapy.'
Read more: http://www.dailymail.co.uk/health/article-2156312/Groundbreaking-Alzheimers-vaccine-cut-cases-half-step-finding-cure.html#ixzz1yovR9d00
Monday, June 18, 2012
GOD MADE CHOCOLATE JUST FOR DAYS LIKE THIS!
Just a quick word about my readership. I appreciate the feedback I'm getting and it's nice to know I'm able to reach out to readers in the U.K., Russia, Germany and several other countries. Thanks so much. I would love for you to drop me an email or comment about your experience with this horrible disease.
We finally got the disability straightened out. If you're wondering if I sat on the deck all day to make sure Alan didn't intercept this mailing, oh yeah I did. I sat right there in the sun until the U.P.S. truck drove up.
This week I've faced another situation. Alan has a couple of chores he's supposed to do regularly. Loading, starting and unloading the dishwasher is one of them. Here's the problem…he forgets he's already washed them, so he turns the dishwasher on again and again. Now there's a horrible build-up of minerals all over the silverware, utensils and dishes. So today I'm soaking everything in vinegar water to remove the stuff. I suppose everything will be bright and shiny for a few days until we have to do it again.
One of the biggest problems is trying to find things that have disappeared. He seems to be better at hiding things than I am at finding them. For two weeks now we've looked for his wallet. It had all his I.D. in it. So where is it? Nobody knows.
This morning Alan walked in….all of sudden he got this horrified look on his face. "I think I'm supposed to be at work this morning."
I explained the situation to him. Twenty minutes later he walked in again. "I think I'm supposed to be at work this morning."
Anyone who reads my blog knows I believe I must keep on laughing to maintain my sanity. But this was just one of those days when I couldn't find a damned thing funny. I did the only thing that would help at this point. Days like this are why God made Chocolate.
We finally got the disability straightened out. If you're wondering if I sat on the deck all day to make sure Alan didn't intercept this mailing, oh yeah I did. I sat right there in the sun until the U.P.S. truck drove up.
This week I've faced another situation. Alan has a couple of chores he's supposed to do regularly. Loading, starting and unloading the dishwasher is one of them. Here's the problem…he forgets he's already washed them, so he turns the dishwasher on again and again. Now there's a horrible build-up of minerals all over the silverware, utensils and dishes. So today I'm soaking everything in vinegar water to remove the stuff. I suppose everything will be bright and shiny for a few days until we have to do it again.
One of the biggest problems is trying to find things that have disappeared. He seems to be better at hiding things than I am at finding them. For two weeks now we've looked for his wallet. It had all his I.D. in it. So where is it? Nobody knows.
This morning Alan walked in….all of sudden he got this horrified look on his face. "I think I'm supposed to be at work this morning."
I explained the situation to him. Twenty minutes later he walked in again. "I think I'm supposed to be at work this morning."
Anyone who reads my blog knows I believe I must keep on laughing to maintain my sanity. But this was just one of those days when I couldn't find a damned thing funny. I did the only thing that would help at this point. Days like this are why God made Chocolate.
Tuesday, June 12, 2012
PLAYING HIDE AND GO SEEK WITH DISABILITY
The SSI stopped, I expected life to improve financially. With the end of SSI, Alan's food stamps disappeared. Also, the medicaid stopped. I was told his first disability payment would arrive as a PAPER check around May 20th. He would then receive his next payment on the third of June.
I inquired when his medicaid card would arrive. The lady told me "Oh, that won't start for 24 months." I was stunned.
"I was told he would automatically receive medicaid when his disability started!" I told the lady.
"He will but it won't start for 24 months," she said.
I questioned, "IT'S GONNA BE TWO YEARS?"
"No," she said, "24 months."
I tried to keep from laughing. I could see this lady and I were not on the same page and pleading my case was going to be an exercise in futility. Since I always try to see the "up side" of things, I decided to be grateful the government is apparently hiring the handicapped.
If you're caring for someone with alzheimer's disease, you've come to realize that things disappear, never to be seen again. So I watched the mail like a bulldog to make sure every piece got into MY hands. And I watched. And I watched. And that paper check never came.
Finally on the 4th of June, I called. "His direct express card was sent on April 1." I was told.
I went on a search of the house. Nothing. To make a long story short, about 30 minutes AFTER they cancelled the card, Alan said "Is this Direct Express thing what you're looking for?"
There it was in all it's cancelled glory, folded up in the sheet of paper it came on and with coffee rings on it. He had been using it as a coaster.
I was told they would expedite another card. I never saw it, although, when tracked, it showed it had been delivered by U.P.S. the day after it was sent.
I looked everywhere to see where he might have hidden it. I searched pockets of dirty and clean clothes, in drawers, under his mattress. Nothing. Could it be in his wallet? Who knows...he's lost it.
So they have now sent the third card. Will it come today? I'm sure it will. Will I be alert enough to beat Alan to it? I hope so. I'm thinking about sleeping on the front deck to wait all day for the U.P.S. man.
Every time I cook, it's like a continual Easter egg hunt for pots, pans, and utensils. Nothing is EVER in the same place twice nor in the proper place.
I've been playing this hide and seek game for two years now. Oh excuse me, not two years…that would be 24 months.
I inquired when his medicaid card would arrive. The lady told me "Oh, that won't start for 24 months." I was stunned.
"I was told he would automatically receive medicaid when his disability started!" I told the lady.
"He will but it won't start for 24 months," she said.
I questioned, "IT'S GONNA BE TWO YEARS?"
"No," she said, "24 months."
I tried to keep from laughing. I could see this lady and I were not on the same page and pleading my case was going to be an exercise in futility. Since I always try to see the "up side" of things, I decided to be grateful the government is apparently hiring the handicapped.
If you're caring for someone with alzheimer's disease, you've come to realize that things disappear, never to be seen again. So I watched the mail like a bulldog to make sure every piece got into MY hands. And I watched. And I watched. And that paper check never came.
Finally on the 4th of June, I called. "His direct express card was sent on April 1." I was told.
I went on a search of the house. Nothing. To make a long story short, about 30 minutes AFTER they cancelled the card, Alan said "Is this Direct Express thing what you're looking for?"
There it was in all it's cancelled glory, folded up in the sheet of paper it came on and with coffee rings on it. He had been using it as a coaster.
I was told they would expedite another card. I never saw it, although, when tracked, it showed it had been delivered by U.P.S. the day after it was sent.
I looked everywhere to see where he might have hidden it. I searched pockets of dirty and clean clothes, in drawers, under his mattress. Nothing. Could it be in his wallet? Who knows...he's lost it.
So they have now sent the third card. Will it come today? I'm sure it will. Will I be alert enough to beat Alan to it? I hope so. I'm thinking about sleeping on the front deck to wait all day for the U.P.S. man.
Every time I cook, it's like a continual Easter egg hunt for pots, pans, and utensils. Nothing is EVER in the same place twice nor in the proper place.
I've been playing this hide and seek game for two years now. Oh excuse me, not two years…that would be 24 months.
Saturday, May 19, 2012
JUST AS THINGS SMOOTHED OUT, I GOT BLINDSIDED BY THE GOVERNMENT.
Here's a handy little piece of information it would have been nice to have known.
I was told by Department of Human Services, when Alan went on SSI, that he would automatically get medicaid but it would drop when his disability started, BUT he would still get medicaid through another source. It would just be paid through a different department.
Yeah right. Here's what I wasn't told.
When the disability started his medicaid dropped. What they didn't tell me: his medicaid would not start again for TWO YEARS! So now, Alan is once again not covered.
I had just landed a part time job because a caretaker was being paid by his medicaid. JUST STARTED THE JOB. Now I'm out of a caretaker again for 24 months.
I've made phone calls. I've cried, complained, whined, looked sad, all to no avail. That's just the rule or the law or something. I have no clue where to turn now. All of the things that provide respite care are paid by medicaid, and I'm betting the farm that any insurance isn't going to pay. If it did it wouldn't be affordable.
Having a caretaker come in was so wonderful. I had just started snapping out of that hellish caretaker burnout I was in. I had not had any relief for 2 years. Now all I can look forward to is another two with no or little relief.
I need to be able to work. Like lots of you, the only income I have is my medicare. That's hardly enough to barely exist much less afford anything else.
My only option, at this point, is to drag Alan around with me while I'm working. That is not a good situation for him. If you're dealing with someone who has dementia, you know they wander restlessly, back and forth all day long. I'm a process server. I can't leave him in the car because it's too hot, not to mention he just might not be there when I get back.
Since I'm a process server, my car is a rolling office. When left in the car, he rummages through everything, leaving my "rolling office" in shambles. And of course, that just irritates the snot out of me. He's just completely uncomfortable having to sit that long. It's not fair to him to be miserable so I can work and it's not fair to me to be irritable at him because he's miserable.
I've had friends offer to help but they would have to drive long distances to get here. That's not acceptable, as far as I'm concerned. I just need someone who can be here, like once or twice a week. Their only job….go for a walk with him, keep him out of MY things and don't let him leave the stove on and burn my house down. He sleeps a lot. So the caretaker is free to read a book, watch television, talk on the phone to their little heart's content.
I will find a solution because I'm not going to let myself burnout again. (She says confidently, even though she has a growing knot in her stomach.)
I was told by Department of Human Services, when Alan went on SSI, that he would automatically get medicaid but it would drop when his disability started, BUT he would still get medicaid through another source. It would just be paid through a different department.
Yeah right. Here's what I wasn't told.
When the disability started his medicaid dropped. What they didn't tell me: his medicaid would not start again for TWO YEARS! So now, Alan is once again not covered.
I had just landed a part time job because a caretaker was being paid by his medicaid. JUST STARTED THE JOB. Now I'm out of a caretaker again for 24 months.
I've made phone calls. I've cried, complained, whined, looked sad, all to no avail. That's just the rule or the law or something. I have no clue where to turn now. All of the things that provide respite care are paid by medicaid, and I'm betting the farm that any insurance isn't going to pay. If it did it wouldn't be affordable.
Having a caretaker come in was so wonderful. I had just started snapping out of that hellish caretaker burnout I was in. I had not had any relief for 2 years. Now all I can look forward to is another two with no or little relief.
I need to be able to work. Like lots of you, the only income I have is my medicare. That's hardly enough to barely exist much less afford anything else.
My only option, at this point, is to drag Alan around with me while I'm working. That is not a good situation for him. If you're dealing with someone who has dementia, you know they wander restlessly, back and forth all day long. I'm a process server. I can't leave him in the car because it's too hot, not to mention he just might not be there when I get back.
Since I'm a process server, my car is a rolling office. When left in the car, he rummages through everything, leaving my "rolling office" in shambles. And of course, that just irritates the snot out of me. He's just completely uncomfortable having to sit that long. It's not fair to him to be miserable so I can work and it's not fair to me to be irritable at him because he's miserable.
I've had friends offer to help but they would have to drive long distances to get here. That's not acceptable, as far as I'm concerned. I just need someone who can be here, like once or twice a week. Their only job….go for a walk with him, keep him out of MY things and don't let him leave the stove on and burn my house down. He sleeps a lot. So the caretaker is free to read a book, watch television, talk on the phone to their little heart's content.
I will find a solution because I'm not going to let myself burnout again. (She says confidently, even though she has a growing knot in her stomach.)
Wednesday, May 9, 2012
IT EVEN PISSED ME OFF TO HAVE TO GET UP TO GO PEE
I would never have suspected I had slipped into caretaker burnout, mostly because I didn't know what to watch for. I've always been somewhat of a hermit, preferring to stay in my house most of the time. I've never been a social butterfly so it seemed natural to me to not want to go anywhere. I also didn't want to do anything. I had no energy, no desire to get out of bed. No desire to get out of my chair. It even pissed me off to have to get up to go pee.
My intentions were to go out everyday when I had someone here for Alan. First day…I didn't do it. I told myself it was probably better for me to stay until he got used to having someone else here. I went back to bed while caretaker (CT) was here.
Second time….stayed home with CT. Told myself I just wanted to visit with CT because she was so interesting. Went back to bed again.
Day 3…didn't want to have to do my hair. Did it and went to visit my pastor-sergeant-friend. Enjoyed it.
Monday, Day 4…Didn't want to have to do my hair again. Just too tired and don't care.
Wednesday, Day 5…My 12-step sponsor actually hollered at me over the phone, ordering me to "GET OUT OF THAT HOUSE." I dragged my feet but finally got my hair done and went to see same friend I saw on day 3.
On the way home some of the cobwebs began to disappear and I decided I felt good enough to go buy some new phones because my house phones had died. Did that. Decided to go see about joining a gym. Checked a place where I could afford to take Alan to exercise. OOPS! Time for CT to go home.
I went and picked up Alan and we went to the market.
Thursday is not a respite day but I got up and could tell immediately I was beginning to feel better. By Friday, I was up and out of the house right after CT arrived.
Monday went to visit a friend.
Tuesday made arrangements to take Alan to some Yoga and Zumba Gold classes. Don't know if Alan can do the Zumba but he always loved to dance. Think he'll love it and he'll get exercise he needs.
Getting ready to sign myself up at the gym where they have machines I can use. It's right across the street from Alan's yoga classes. Caretaker can take Alan to his classes while I'm exercising at the gym. How cool!
I should have checked to see what caretaker burnout was. I really thought they were talking about turning into a screaming maniac and I didn't have that problem. I was just sinking deeper into myself and had absolutely no energy. I finally got where I couldn't write my blogs. I'm grateful to be out of the burnout. I won't let myself fall into that trap again.
And I'm back to blogging again which I really enjoy.
I had friends who offered to stay and let me out of the house for a while. I always turned down the opportunity….guilt? Probably. But then I really thought I was fine.
A word of warning: You'll be doing yourself a favor if you prevent burnout instead of trying to SNAP OUT of burnout.
My intentions were to go out everyday when I had someone here for Alan. First day…I didn't do it. I told myself it was probably better for me to stay until he got used to having someone else here. I went back to bed while caretaker (CT) was here.
Second time….stayed home with CT. Told myself I just wanted to visit with CT because she was so interesting. Went back to bed again.
Day 3…didn't want to have to do my hair. Did it and went to visit my pastor-sergeant-friend. Enjoyed it.
Monday, Day 4…Didn't want to have to do my hair again. Just too tired and don't care.
Wednesday, Day 5…My 12-step sponsor actually hollered at me over the phone, ordering me to "GET OUT OF THAT HOUSE." I dragged my feet but finally got my hair done and went to see same friend I saw on day 3.
On the way home some of the cobwebs began to disappear and I decided I felt good enough to go buy some new phones because my house phones had died. Did that. Decided to go see about joining a gym. Checked a place where I could afford to take Alan to exercise. OOPS! Time for CT to go home.
I went and picked up Alan and we went to the market.
Thursday is not a respite day but I got up and could tell immediately I was beginning to feel better. By Friday, I was up and out of the house right after CT arrived.
Monday went to visit a friend.
Tuesday made arrangements to take Alan to some Yoga and Zumba Gold classes. Don't know if Alan can do the Zumba but he always loved to dance. Think he'll love it and he'll get exercise he needs.
Getting ready to sign myself up at the gym where they have machines I can use. It's right across the street from Alan's yoga classes. Caretaker can take Alan to his classes while I'm exercising at the gym. How cool!
I should have checked to see what caretaker burnout was. I really thought they were talking about turning into a screaming maniac and I didn't have that problem. I was just sinking deeper into myself and had absolutely no energy. I finally got where I couldn't write my blogs. I'm grateful to be out of the burnout. I won't let myself fall into that trap again.
And I'm back to blogging again which I really enjoy.
I had friends who offered to stay and let me out of the house for a while. I always turned down the opportunity….guilt? Probably. But then I really thought I was fine.
A word of warning: You'll be doing yourself a favor if you prevent burnout instead of trying to SNAP OUT of burnout.
Sunday, April 29, 2012
I'M A TEXT BOOK CASE OF CARETAKER BURNOUT
Help has arrived. I now have four hours, three days a week, off. Yes, I can do whatever I want for FOUR straight hours. Guess what I chose to do!
I went to bed and slept for three and one-half hours, without worrying Alan might accidentally burn the house down.
Being caretaker for a dementia patient can be very confining. You're joined at the hip 7 days a week and 24 hours a day. That's how it's been for me for the last two years.
Now when I'm faced with being able to leave for a period of time, I have no idea what to do or where to go. It's a strange feeling. It's a mixture of apathy and just too freaking tired to get dressed and go anywhere. I know I've got to make myself get up and get moving.
I'm not sure what's happened to ME during this. I think I've taken the path of least resistance and just accepted the inevitable.
The caretaker is amazed Alan is so high-functioning. He plays the piano. He talked to the caretaker. He does NOT talk to me. I'm sure there's some resentment because he still doesn't believe he has alzheimer's. He has no memory of the past few years but he doesn't remember that he doesn't remember. He can't remember how to turn the television on. He can't remember to turn the stove off.
He doesn't seem to be cooperative with the new caretaker. He refused what she wanted to make him for lunch.
I've always valued time alone. I've had no time for myself for two years now. Maybe what I'm feeling is guilt at leaving him. Funny, considering I felt no guilt for divorcing him.
When I found out there was help on the way, I had a million ideas go through my head of things I could now do. A week later when help arrived, I went blank, having no idea what to do with myself for four hours.
Maybe I'm lonely? I don't think so but when sales people call, I trap them on the phone. They don't care what I'm telling them. I don't care that they don't care because I have a captive audience to listen to me.
Tomorrow I have another chance to get away. I'll have to think about that tonight.
Alan is certainly not hard to get along with at this point. Maybe things are just too quiet.
I miss my family terribly but seeing them is not an option either. Maybe I'll do something exciting like lock myself in my bedroom and write some of my other blogs. Not a bad idea. A 12-step meeting on Wednesday….oh yeah, I could certainly use that.
Interesting thing about writing a blog. It's amazing what you find out about yourself when you just sit down and start writing your thoughts sometimes.
When I thought I was through writing this one, I went over and googled "caretaker burnout". This whole blog is a classic of caretaker burnout and I didn't know it until after I wrote it.
So when I get up in the morning I will get dressed, do my hair, and go find something interesting to do. I WILL take care of me tomorrow, Wednesday and Friday.
God grant me the serenity to accept the things I cannot change,
the courage to change the things I can,
and the wisdom to know the difference.
The only thing I can change is me. So I think I'll just do that, starting in the morning.
I went to bed and slept for three and one-half hours, without worrying Alan might accidentally burn the house down.
Being caretaker for a dementia patient can be very confining. You're joined at the hip 7 days a week and 24 hours a day. That's how it's been for me for the last two years.
Now when I'm faced with being able to leave for a period of time, I have no idea what to do or where to go. It's a strange feeling. It's a mixture of apathy and just too freaking tired to get dressed and go anywhere. I know I've got to make myself get up and get moving.
I'm not sure what's happened to ME during this. I think I've taken the path of least resistance and just accepted the inevitable.
The caretaker is amazed Alan is so high-functioning. He plays the piano. He talked to the caretaker. He does NOT talk to me. I'm sure there's some resentment because he still doesn't believe he has alzheimer's. He has no memory of the past few years but he doesn't remember that he doesn't remember. He can't remember how to turn the television on. He can't remember to turn the stove off.
He doesn't seem to be cooperative with the new caretaker. He refused what she wanted to make him for lunch.
I've always valued time alone. I've had no time for myself for two years now. Maybe what I'm feeling is guilt at leaving him. Funny, considering I felt no guilt for divorcing him.
When I found out there was help on the way, I had a million ideas go through my head of things I could now do. A week later when help arrived, I went blank, having no idea what to do with myself for four hours.
Maybe I'm lonely? I don't think so but when sales people call, I trap them on the phone. They don't care what I'm telling them. I don't care that they don't care because I have a captive audience to listen to me.
Tomorrow I have another chance to get away. I'll have to think about that tonight.
Alan is certainly not hard to get along with at this point. Maybe things are just too quiet.
I miss my family terribly but seeing them is not an option either. Maybe I'll do something exciting like lock myself in my bedroom and write some of my other blogs. Not a bad idea. A 12-step meeting on Wednesday….oh yeah, I could certainly use that.
Interesting thing about writing a blog. It's amazing what you find out about yourself when you just sit down and start writing your thoughts sometimes.
When I thought I was through writing this one, I went over and googled "caretaker burnout". This whole blog is a classic of caretaker burnout and I didn't know it until after I wrote it.
So when I get up in the morning I will get dressed, do my hair, and go find something interesting to do. I WILL take care of me tomorrow, Wednesday and Friday.
God grant me the serenity to accept the things I cannot change,
the courage to change the things I can,
and the wisdom to know the difference.
The only thing I can change is me. So I think I'll just do that, starting in the morning.
Tuesday, April 10, 2012
HOLY TOLEDO BATMAN! HELP IS ON THE WAY!
Had a truly interesting experience last week. I joined a website that would offer me a support group and lots of information on alzheimer's disease and dementia. They send me an email every week with some really helpful tips about caring for a family member who has Alzheimer's. It's been extremely helpful to me.
This site also has a cancer group, end of life group, caring for a spouse group, etc. What first attracted me to the site was an Alzheimer's Stage group. It helps me keep up with how the disease is progressing in my ex -husband. Very, very useful.
Lots of information on arthritis, on heart disease and no telling what else. Anyway, you might want to check it out. They can also assist you in finding a Senior Living facility, assisted living, whatever your need happens to be.
One of the things I had wondered about was what it would cost to get some respite help. I knew we couldn't afford respite care right now, but my curiosity lead me to click on a link. All it said was "What does it cost for help? You will receive an email." By now I was figuring they were going to send me ads for nursing homes. This was the middle of the night, so I just went to bed and forgot it.
About 8:00 a.m. the next morning, my phone rang. A woman introduced herself, and said "I just received a fax saying you need help." Naturally I told her I couldn't afford help.
"Does he have medicaid?", she asked. Yeah, he does. "Don't worry about it then. Medicaid will pick up the whole cost. You can have help up to 14 hours a week."
Holy Toledo, Batman. This site didn't just promise "pie in the sky". They contacted the correct agency and got the ball rolling.
I'm going to get 14 hours to do something for ME? Wow. The nurse is supposed to be here today to fill out the papers. Then it will be a week before it can start. So by next week, my hair will no longer be hanging in my eyes like an English Sheepdog, I can go exercise and maybe have lunch with the girls. She said I could even take off of an evening to attend my favorite 12-step program.
In case you want to check them out, here's the link:
http://www.caring.com
This site also has a cancer group, end of life group, caring for a spouse group, etc. What first attracted me to the site was an Alzheimer's Stage group. It helps me keep up with how the disease is progressing in my ex -husband. Very, very useful.
Lots of information on arthritis, on heart disease and no telling what else. Anyway, you might want to check it out. They can also assist you in finding a Senior Living facility, assisted living, whatever your need happens to be.
One of the things I had wondered about was what it would cost to get some respite help. I knew we couldn't afford respite care right now, but my curiosity lead me to click on a link. All it said was "What does it cost for help? You will receive an email." By now I was figuring they were going to send me ads for nursing homes. This was the middle of the night, so I just went to bed and forgot it.
About 8:00 a.m. the next morning, my phone rang. A woman introduced herself, and said "I just received a fax saying you need help." Naturally I told her I couldn't afford help.
"Does he have medicaid?", she asked. Yeah, he does. "Don't worry about it then. Medicaid will pick up the whole cost. You can have help up to 14 hours a week."
Holy Toledo, Batman. This site didn't just promise "pie in the sky". They contacted the correct agency and got the ball rolling.
I'm going to get 14 hours to do something for ME? Wow. The nurse is supposed to be here today to fill out the papers. Then it will be a week before it can start. So by next week, my hair will no longer be hanging in my eyes like an English Sheepdog, I can go exercise and maybe have lunch with the girls. She said I could even take off of an evening to attend my favorite 12-step program.
In case you want to check them out, here's the link:
http://www.caring.com
Friday, April 6, 2012
PLAYING "CHASE" AND CHASING BUTTERFLIES
Living with someone who has alzheimer's can be a nightmare for some caretakers. Actually I had decided, the day of the diagnosis, it was something I could get through without losing my mind. But I also knew the only way that would happen was to not only keep, but to hone my sense of humor.
As we sat in the car, outside the memory clinic, I told Alan what the doctors had said. I told him "We can get through this if we laugh our way through it."
First of all, I now know he didn't totally understand the implications. Secondly, he didn't believe it. That was a lifetime ago. In actuality it's only been five months. You know how time flies when you're having fun? Let me tell you time drags on and on when you're not having fun.
I have one huge advantage…I was an only child and rarely had other kids to play with, so I learned how to amuse myself without having anyone I could talk to except my trusty dog. He couldn't talk back to me. It's rather like living with someone who has alzheimer's, except the dog was more fun and was trainable.
We have a new game that's very interesting. I have fought the battle of trying to get the cat back in the house for months now. He kept escaping whenever Alan went outside and then it would take sometimes hours to get the cat back inside. It kept me upset, which was my fault for buying an expensive cat in the first place. I was worried about the cat being outside and was determined he was going to be an inside cat, so he'd be safe. Alan would even get up in the middle of the night, open a door and stick his head out just to see if it was cold outside. It was. And the cat would slip right by him and be stuck out in the cold the rest of the night. I wouldn't become aware he was out, until I woke up in the morning without the cat biting me.
I decided, to keep my sanity, I was going to have to give up this battle. So I started letting the cat outside every morning. He loves playing in the yard, chasing butterflies and grasshoppers, and he stays in the front yard. I leave the door in my sun room open so he can go in and out. Then I keep him in sometime in the afternoon, check him over for ticks, brush him and we all take a nap.
The game immediately changed. Alan now stays busy trying to get the cat back in and closing my sliding glass door. I constantly have to make him open my door back up so the cat can get in. Reminding him of ANYTHING has to be done every few minutes most of the time. But he just can't stand seeing that cat outside. He worries, he chases the cat, he closes the door, he opens the door…which is rather amusing considering the game has done an about face.
Everyone knows how cats just love to play chase, so they're both much happier now. Cat chases butterflies and Alan chases Cat. WHEEEE!
As we sat in the car, outside the memory clinic, I told Alan what the doctors had said. I told him "We can get through this if we laugh our way through it."
First of all, I now know he didn't totally understand the implications. Secondly, he didn't believe it. That was a lifetime ago. In actuality it's only been five months. You know how time flies when you're having fun? Let me tell you time drags on and on when you're not having fun.
I have one huge advantage…I was an only child and rarely had other kids to play with, so I learned how to amuse myself without having anyone I could talk to except my trusty dog. He couldn't talk back to me. It's rather like living with someone who has alzheimer's, except the dog was more fun and was trainable.
We have a new game that's very interesting. I have fought the battle of trying to get the cat back in the house for months now. He kept escaping whenever Alan went outside and then it would take sometimes hours to get the cat back inside. It kept me upset, which was my fault for buying an expensive cat in the first place. I was worried about the cat being outside and was determined he was going to be an inside cat, so he'd be safe. Alan would even get up in the middle of the night, open a door and stick his head out just to see if it was cold outside. It was. And the cat would slip right by him and be stuck out in the cold the rest of the night. I wouldn't become aware he was out, until I woke up in the morning without the cat biting me.
I decided, to keep my sanity, I was going to have to give up this battle. So I started letting the cat outside every morning. He loves playing in the yard, chasing butterflies and grasshoppers, and he stays in the front yard. I leave the door in my sun room open so he can go in and out. Then I keep him in sometime in the afternoon, check him over for ticks, brush him and we all take a nap.
The game immediately changed. Alan now stays busy trying to get the cat back in and closing my sliding glass door. I constantly have to make him open my door back up so the cat can get in. Reminding him of ANYTHING has to be done every few minutes most of the time. But he just can't stand seeing that cat outside. He worries, he chases the cat, he closes the door, he opens the door…which is rather amusing considering the game has done an about face.
Everyone knows how cats just love to play chase, so they're both much happier now. Cat chases butterflies and Alan chases Cat. WHEEEE!
Saturday, March 31, 2012
HOW DID I END UP BEING A CARETAKER. REFLECTIONS OF THE PAST
This whole alzheimer's thing has certainly been a learning experience. One thing I've learned is how little I know. Now that's quite a leap for someone…uh…like me…who thought they knew pretty much everything. I figured I would have no problem communicating with Alan. That was my first clue that I didn't know everything.
Alan was an intelligent man, an award winning writer with an admirable vocabulary. I've always been somewhat of a wordsmith myself, with a large speaking vocabulary. We both were political animals, I more than him, but it was a favorite subject when we talked. We were involved. Both of us voracious readers. Both of us written more than one newspaper column for years.
We both appreciated more than one type of music. While not a deep love match, it was a good friendship.
Not realizing that alzheimer's was rearing it's ugly head, the friendship was the first thing to go. We were living in the same house, but had actually split sometime in 2003. I was content with the arrangement and so was he. We lived somewhat separate lives, him living on one end of the house and me on the other. Then things took a nose dive. He began to rummage through my things. I had no privacy. I couldn't live with what I interpreted as total disrespect. He had lost both of his jobs. I felt like I was losing my mind. And he was reverting to some old behaviors that I refused to live with.
By the time I filed for divorced, the friendship was laying in tatters.
It was about this time an acquaintance mentioned how sorry he was to hear Alan had alzheimer's. That was my "heads up" moment, and several months later he was finally diagnosed. And that explains how I missed all of the early signs that had apparently been creeping up for several years. If we had a closer relationship, I might have spotted it sooner but maybe ignorance was bliss.
So why write this today? Maybe I'm tired and decided to reflect and maybe I just needed to dump on someone. Are there funny things I could write. Oh yeah there are but I'm just too tired to start this blog over today.
Alan was an intelligent man, an award winning writer with an admirable vocabulary. I've always been somewhat of a wordsmith myself, with a large speaking vocabulary. We both were political animals, I more than him, but it was a favorite subject when we talked. We were involved. Both of us voracious readers. Both of us written more than one newspaper column for years.
We both appreciated more than one type of music. While not a deep love match, it was a good friendship.
Not realizing that alzheimer's was rearing it's ugly head, the friendship was the first thing to go. We were living in the same house, but had actually split sometime in 2003. I was content with the arrangement and so was he. We lived somewhat separate lives, him living on one end of the house and me on the other. Then things took a nose dive. He began to rummage through my things. I had no privacy. I couldn't live with what I interpreted as total disrespect. He had lost both of his jobs. I felt like I was losing my mind. And he was reverting to some old behaviors that I refused to live with.
By the time I filed for divorced, the friendship was laying in tatters.
It was about this time an acquaintance mentioned how sorry he was to hear Alan had alzheimer's. That was my "heads up" moment, and several months later he was finally diagnosed. And that explains how I missed all of the early signs that had apparently been creeping up for several years. If we had a closer relationship, I might have spotted it sooner but maybe ignorance was bliss.
So why write this today? Maybe I'm tired and decided to reflect and maybe I just needed to dump on someone. Are there funny things I could write. Oh yeah there are but I'm just too tired to start this blog over today.
Friday, March 23, 2012
HE STARTED MUTTERING, "BLAH, BLAH, BLAH, BLAH, BLAH"
I've been told to keep things simple, and with few words, to speak alzheimer's. God knows I try, sometimes with disastrous results.
Good example was tonight. I still expect Alan to help with chores, because he's always been hyperactive and a hard worker. I do not want him to start feeling useless.
One of the things he can still do is hardboil eggs. I was planning on having one of Alan's favorite things for supper. It's quick and easy. You just make a white gravy and chop up boiled eggs in it. Then you serve it over toast.
"Alan, could you boil me 4 eggs. I'm going to need them for dinner".
"okay"
I said to explain, "You can boil more if you want some but I'm gonna need four."
About thirty minutes he walked into my sun room and handed me a plate with four peeled hardboiled eggs.
Puzzled, I asked "What are these for?"
Making a long boring story shorter, according to Alan it was my dinner. He had fixed himself four also. So I still haven't learned to speak fluent alzheimer's.
A nurse friend of mine told me not to use so many words when I'm telling Alan anything. She said all he would hear, after about the first few words is "blah, blah, blah, blah.
That turned out to be prophetic when Alan left the room one day after I had explained something to him. As soon as he walked into the next room, he started muttering, "blah, blah, blah, blah, blah." I couldn't keep from laughing.
If you're a caretaker, I can't stress enough how important for you to be able to laugh. Just make sure the person knows you're laughing with them not AT them. Then remember to laugh at yourself too.
Even though, Alan can't communicate well anymore, he certainly enjoys a good joke and will laugh a huge laugh that makes me want to keep being funny.
Good example was tonight. I still expect Alan to help with chores, because he's always been hyperactive and a hard worker. I do not want him to start feeling useless.
One of the things he can still do is hardboil eggs. I was planning on having one of Alan's favorite things for supper. It's quick and easy. You just make a white gravy and chop up boiled eggs in it. Then you serve it over toast.
"Alan, could you boil me 4 eggs. I'm going to need them for dinner".
"okay"
I said to explain, "You can boil more if you want some but I'm gonna need four."
About thirty minutes he walked into my sun room and handed me a plate with four peeled hardboiled eggs.
Puzzled, I asked "What are these for?"
Making a long boring story shorter, according to Alan it was my dinner. He had fixed himself four also. So I still haven't learned to speak fluent alzheimer's.
A nurse friend of mine told me not to use so many words when I'm telling Alan anything. She said all he would hear, after about the first few words is "blah, blah, blah, blah.
That turned out to be prophetic when Alan left the room one day after I had explained something to him. As soon as he walked into the next room, he started muttering, "blah, blah, blah, blah, blah." I couldn't keep from laughing.
If you're a caretaker, I can't stress enough how important for you to be able to laugh. Just make sure the person knows you're laughing with them not AT them. Then remember to laugh at yourself too.
Even though, Alan can't communicate well anymore, he certainly enjoys a good joke and will laugh a huge laugh that makes me want to keep being funny.
Wednesday, March 14, 2012
DEALING WITH PUZZLES AND THE CAT
There's a number of things one needs to consider when deciding to keep the person, who suffers from Alzheimer's disease, at home rather than putting them in a nursing facility.
The day we got the diagnosis, the doctors recommended Alan be put in a nursing facility immediately. I made the decision not to do that, at least not at this time. Did I understand the scope of the job I was taking on by making that decision? No. Would I make the same decision if I'd known? Yes.
First of all, charity begins at home. Even though we are divorced, there wasn't any particular resentments on either of our parts. The other thing that figured into my decision was the Golden Rule: Do unto others as you would have them do unto you.
They assured me he would get used to being in a nursing facility. I still figured he would be more comfortable in familiar surroundings. One of the things he has always treasured is his being able to play his piano, and he's still good at it. Being at home would afford him the luxury of being able to play any time he felt like it. It would be nice if he'd stop deciding that 2:00 a.m. is when he'd like to play. It's always been a way for him to get rid of frustration, and I wanted him to still be able to do that. I've noticed he is starting to play less.
We always agreed to have morning coffee for an hour. We did that for years and it consisted of one uninterrupted hour of visiting and drinking coffee. Alan was somewhat of an intellectual. We both kept up with world events so there was never a time we didn't have something to discuss.
That's gone now. He rarely talks, has no idea what's going on in the world or even what year it is.
He's always enjoyed working jigsaw puzzles, the harder the better. We bought a 10,000 piece puzzle we were going to put together when we both retired. It now sets on a shelf, still in the cellophane wrapper, gathering dust because it will never be put together. I bought him a 750 piece a few weeks ago. He just couldn't do it, couldn't even figure out how to get the outside edge done.
A friend bought him a 100 piece the other day. It took a couple or three days but he got it worked. We took it apart and he's now working it again. He's been working on it for 4 days this time and it's almost done.
I went to a 12-step meeting this week. Just like a little kid, he will pick at things until he ruins them. It was a struggle to keep him from picking at scratches on the table. He picked at one until he finally got a hole started. And that was with me constantly telling him to stop. As soon as he saw I wasn't watching he would starting picking at it again.
He has broken a handle on the refrigerator, broken a piece off of the dishwasher, ruined ALL of my pots and pans. I've kept sane by remembering they are just things and can be replaced. Or at least they could be if I could afford it. I can't.
I understand why some people couldn't do what I'm doing. But over the years, I've learned things that are helping me cope fairly comfortably. Thank God for my favorite 12-step program.
I've learned that I only have to worry about today. I'm doing this one day at a time. I've learned not to sweat the small stuff. If I can't handle something, I've learned to put it in God's hands and leave it there. I've learned to try to find the humor in situations.
Yes, there may come a time I have to look into nursing facilities. But I don't have to do it today. Today I have him outside weeding flower beds, which he's always loved doing, in preparation for planting some things. Will he pull up my hostas, flowers and herbs. Probably. I'll actually be surprised if any of them survive but that's okay. They can be replaced.
Will it look like crap when he get's it done. Probably. But that's okay too. What doesn't kill me will only make me stronger. Or royally piss me off. (sigh) Gotta go find the cat. I just found out he let him out again.
The day we got the diagnosis, the doctors recommended Alan be put in a nursing facility immediately. I made the decision not to do that, at least not at this time. Did I understand the scope of the job I was taking on by making that decision? No. Would I make the same decision if I'd known? Yes.
First of all, charity begins at home. Even though we are divorced, there wasn't any particular resentments on either of our parts. The other thing that figured into my decision was the Golden Rule: Do unto others as you would have them do unto you.
They assured me he would get used to being in a nursing facility. I still figured he would be more comfortable in familiar surroundings. One of the things he has always treasured is his being able to play his piano, and he's still good at it. Being at home would afford him the luxury of being able to play any time he felt like it. It would be nice if he'd stop deciding that 2:00 a.m. is when he'd like to play. It's always been a way for him to get rid of frustration, and I wanted him to still be able to do that. I've noticed he is starting to play less.
We always agreed to have morning coffee for an hour. We did that for years and it consisted of one uninterrupted hour of visiting and drinking coffee. Alan was somewhat of an intellectual. We both kept up with world events so there was never a time we didn't have something to discuss.
That's gone now. He rarely talks, has no idea what's going on in the world or even what year it is.
He's always enjoyed working jigsaw puzzles, the harder the better. We bought a 10,000 piece puzzle we were going to put together when we both retired. It now sets on a shelf, still in the cellophane wrapper, gathering dust because it will never be put together. I bought him a 750 piece a few weeks ago. He just couldn't do it, couldn't even figure out how to get the outside edge done.
A friend bought him a 100 piece the other day. It took a couple or three days but he got it worked. We took it apart and he's now working it again. He's been working on it for 4 days this time and it's almost done.
I went to a 12-step meeting this week. Just like a little kid, he will pick at things until he ruins them. It was a struggle to keep him from picking at scratches on the table. He picked at one until he finally got a hole started. And that was with me constantly telling him to stop. As soon as he saw I wasn't watching he would starting picking at it again.
He has broken a handle on the refrigerator, broken a piece off of the dishwasher, ruined ALL of my pots and pans. I've kept sane by remembering they are just things and can be replaced. Or at least they could be if I could afford it. I can't.
I understand why some people couldn't do what I'm doing. But over the years, I've learned things that are helping me cope fairly comfortably. Thank God for my favorite 12-step program.
I've learned that I only have to worry about today. I'm doing this one day at a time. I've learned not to sweat the small stuff. If I can't handle something, I've learned to put it in God's hands and leave it there. I've learned to try to find the humor in situations.
Yes, there may come a time I have to look into nursing facilities. But I don't have to do it today. Today I have him outside weeding flower beds, which he's always loved doing, in preparation for planting some things. Will he pull up my hostas, flowers and herbs. Probably. I'll actually be surprised if any of them survive but that's okay. They can be replaced.
Will it look like crap when he get's it done. Probably. But that's okay too. What doesn't kill me will only make me stronger. Or royally piss me off. (sigh) Gotta go find the cat. I just found out he let him out again.
Thursday, March 8, 2012
I KNOW A TRICK... I CAN STICK MY HEAD IN THE SAND
A little background here to help explain the mess I found myself in recently.
Even though we continued living in the same house, my ex-husband and I had been living somewhat separate lives for a few years. When I finally got a divorce, the judge ordered we would continue living in the same house. Alan would continue living in one end of the house and I would live in the other end, just as we had been doing for the last several years. A strange arrangement, for sure. But then we had both been a little strange anyway. We were both loners and valued our privacy, so living in the same structure was not a problem for either of us.
When we divorced, he signed the house over to me. We continued our living arrangement because he really had no place else to go and no income at that point. One of the areas that was considered "his area" was the basement. I hadn't been down there in years. Another area that I stayed completely away from was his bedroom on the other end of the house.
After his diagnosis, my best friend came over one day and asked what was in the basement. I told her I had no idea because that had always been Alan's "man cave". She came back up and insisted I go look. It was so nasty we could only walk about 3 steps into the door. I was absolutely sick.
She and another friend, plus a couple of friends who are football - weight lifter types, came over and we worked our butts off cleaning out that basement. Another guy volunteered his flatbed trailers and said "Fill them up and call me. I'll make it all disappear." That's what happened.
Yesterday BFF Stacy and I tackled Alan's bedroom. I had no idea he had become such a hoarder. It was horrid. We worked for hours. Bags and bags of crap were carried out of there. I finally had to quit. Stacy stayed after it and more bags of crap left.
This whole alzheimer's thing has certainly been a nightmare. I had no idea what I was in for. Talk about sticking your head in the sand. Apparently I had become an expert at just ignoring everything around me. It was easier.
Now I'm having to develop some other skills, like reminding myself how I would want to be treated whenever I'm about ready to come unglued. Like not screaming when I feel like it. Like being able to let off steam by talking it out with a friend instead of letting myself get sick because I'm stuffing it all inside. It would be so easy to stuff things so everybody would think I was so sweet.
I'm learning to try to do things God's way. And I'm doing everything I can to avoid burnout, otherwise I'm going to be crazier than I am now.
I've never been sweet. I can be really sarcastic. I've been a private investigator for years for Pete's sake. Trust me when I say I'm NOT sweet. So I'm learning to not be snotty when I get hit with frustration. But trying to learn how to be sweet has been like trying to teach a chihuahua to hunt. You might get him to appear to be hunting, but in the end he's going to start barking nonstop. Then he's eventually going to end up biting you. I might appear to be sweet, but in the end I'm just going to start barking nonstop....(sigh)....never mind.
Even though we continued living in the same house, my ex-husband and I had been living somewhat separate lives for a few years. When I finally got a divorce, the judge ordered we would continue living in the same house. Alan would continue living in one end of the house and I would live in the other end, just as we had been doing for the last several years. A strange arrangement, for sure. But then we had both been a little strange anyway. We were both loners and valued our privacy, so living in the same structure was not a problem for either of us.
When we divorced, he signed the house over to me. We continued our living arrangement because he really had no place else to go and no income at that point. One of the areas that was considered "his area" was the basement. I hadn't been down there in years. Another area that I stayed completely away from was his bedroom on the other end of the house.
After his diagnosis, my best friend came over one day and asked what was in the basement. I told her I had no idea because that had always been Alan's "man cave". She came back up and insisted I go look. It was so nasty we could only walk about 3 steps into the door. I was absolutely sick.
She and another friend, plus a couple of friends who are football - weight lifter types, came over and we worked our butts off cleaning out that basement. Another guy volunteered his flatbed trailers and said "Fill them up and call me. I'll make it all disappear." That's what happened.
Yesterday BFF Stacy and I tackled Alan's bedroom. I had no idea he had become such a hoarder. It was horrid. We worked for hours. Bags and bags of crap were carried out of there. I finally had to quit. Stacy stayed after it and more bags of crap left.
This whole alzheimer's thing has certainly been a nightmare. I had no idea what I was in for. Talk about sticking your head in the sand. Apparently I had become an expert at just ignoring everything around me. It was easier.
Now I'm having to develop some other skills, like reminding myself how I would want to be treated whenever I'm about ready to come unglued. Like not screaming when I feel like it. Like being able to let off steam by talking it out with a friend instead of letting myself get sick because I'm stuffing it all inside. It would be so easy to stuff things so everybody would think I was so sweet.
I'm learning to try to do things God's way. And I'm doing everything I can to avoid burnout, otherwise I'm going to be crazier than I am now.
I've never been sweet. I can be really sarcastic. I've been a private investigator for years for Pete's sake. Trust me when I say I'm NOT sweet. So I'm learning to not be snotty when I get hit with frustration. But trying to learn how to be sweet has been like trying to teach a chihuahua to hunt. You might get him to appear to be hunting, but in the end he's going to start barking nonstop. Then he's eventually going to end up biting you. I might appear to be sweet, but in the end I'm just going to start barking nonstop....(sigh)....never mind.
Monday, March 5, 2012
EARLY SIGNS OF ALZHEIMER'S DISEASE
When I first noticed something was wrong with my ex-husband, I went from being angry with him to being ashamed of myself for imagining something was wrong with him. It was easier to believe I was turning into a screaming bitch.
He would do things that infuriated me, leaving me screaming while he just stood and had this blank look and stupid smile on his face. That would make me scream louder, threaten to do bodily harm to him, while he continued to just stand there and smile.
Had I recognized the signs of alzheimer's it would have saved me from getting crazier by the minute and maybe gotten him help before it was too late. I'm hoping I can keep readers from making the same mistake I made.
I'll admit I thought he was just getting stupid when he searched for the words for corn dog and came up with sausage on a stick.
He had always been known as a fabulous Feature writer and had won awards. All of a sudden he started telling me, "They want me to start writing feature stories." I would say something like "So start doing feature stories." His response was ALWAYS, "I can't think of anything to write about." WHAT???
I could come up with 20 ideas off the top of my head. He would write them down in the ever-present notebook he carried in his pocket.
Two days later he would say, "They want me to start writing feature stories." I would say something like "So start doing feature stories." His response was ALWAYS, "I can't think of anything to write about."
"Where's the list you made 2 days ago?" Standard answer: "I don't know".
I thought he was being stubborn because he just didn't want to do it.
Another sign: Following their companion from room to room. This is calling "Shadowing." This drove me up the walls.
Rummaging. He would go into my bathroom and rummage through all of my drawers, leaving things in disarray and all the drawers open. "What were you looking for in my bathroom?" Response: "I wasn't in your bathroom." This was just one of the things I interpreted as him becoming a horrible liar.
Every time we got in the car: "Where are we going?" I would answer. About a mile down the road: "Where are we going?" This would be repeated several times.
An increase in sexual behavior. Spent lots of time in the bathroom by himself.
He bought me the same CHEAP angel brooch at Christmas, three years in a row. That should have been a clue but I interpreted it as him being a cheapskate who just didn't care.
TOTAL incompetence with money. No bill paying, overdrawing bank account, didn't keep up with car or house insurance. But would spend on loads of stupid stuff. Could not pass a gum or candy machine without putting his little quarter in the slot.
I got where I was really glad we hadn't passed one of those horses a kid can put a quarter in and ride. To the stores who don't have those things outside…thank you.
Other signs: Can't follow a simple recipe…reading books with less words or stops reading…loses interest in television.
Went to another town…police called me. "He can't find his car and he can't even remember what make of car it is or what color it is."
There were other bazaar things that started happening much earlier but I just overlooked them. He had always been scattered and eccentric.
If you see any of these signs, don't take a chance. Get to a doctor. The first doctor I went to, said he absolutely did not have alzheimer's symptoms. If that happens, get another doctor.
He would do things that infuriated me, leaving me screaming while he just stood and had this blank look and stupid smile on his face. That would make me scream louder, threaten to do bodily harm to him, while he continued to just stand there and smile.
Had I recognized the signs of alzheimer's it would have saved me from getting crazier by the minute and maybe gotten him help before it was too late. I'm hoping I can keep readers from making the same mistake I made.
I'll admit I thought he was just getting stupid when he searched for the words for corn dog and came up with sausage on a stick.
He had always been known as a fabulous Feature writer and had won awards. All of a sudden he started telling me, "They want me to start writing feature stories." I would say something like "So start doing feature stories." His response was ALWAYS, "I can't think of anything to write about." WHAT???
I could come up with 20 ideas off the top of my head. He would write them down in the ever-present notebook he carried in his pocket.
Two days later he would say, "They want me to start writing feature stories." I would say something like "So start doing feature stories." His response was ALWAYS, "I can't think of anything to write about."
"Where's the list you made 2 days ago?" Standard answer: "I don't know".
I thought he was being stubborn because he just didn't want to do it.
Another sign: Following their companion from room to room. This is calling "Shadowing." This drove me up the walls.
Rummaging. He would go into my bathroom and rummage through all of my drawers, leaving things in disarray and all the drawers open. "What were you looking for in my bathroom?" Response: "I wasn't in your bathroom." This was just one of the things I interpreted as him becoming a horrible liar.
Every time we got in the car: "Where are we going?" I would answer. About a mile down the road: "Where are we going?" This would be repeated several times.
An increase in sexual behavior. Spent lots of time in the bathroom by himself.
He bought me the same CHEAP angel brooch at Christmas, three years in a row. That should have been a clue but I interpreted it as him being a cheapskate who just didn't care.
TOTAL incompetence with money. No bill paying, overdrawing bank account, didn't keep up with car or house insurance. But would spend on loads of stupid stuff. Could not pass a gum or candy machine without putting his little quarter in the slot.
I got where I was really glad we hadn't passed one of those horses a kid can put a quarter in and ride. To the stores who don't have those things outside…thank you.
Other signs: Can't follow a simple recipe…reading books with less words or stops reading…loses interest in television.
Went to another town…police called me. "He can't find his car and he can't even remember what make of car it is or what color it is."
There were other bazaar things that started happening much earlier but I just overlooked them. He had always been scattered and eccentric.
If you see any of these signs, don't take a chance. Get to a doctor. The first doctor I went to, said he absolutely did not have alzheimer's symptoms. If that happens, get another doctor.
Friday, February 24, 2012
LEARNING TO SPEAK ALZHEIMERS
Keeping a sense of humor sometimes has to be kept to yourself until you get where you can laugh without hurting someone else's feelings. I don't ever want to be guilty of laughing AT someone instead of WITH them.
Twice a week I have to get up at 4:30 am, rush around, and get to town to pick up a friend. Because of a medical condition he's not allowed to drive right now and he's a professor at a college 38 miles from Eureka. We get him there by 7:00 am, rush to McDonald's for a bite and some more coffee. Then we head back to the college, find a parking place, put the seats back and catch up on our sleep in the car until time to pick up the professor at 10:30 am.
I try to get Alan to get his clothes ready the night before so he can just put them on when he hits the floor. Doesn't work, but I try.
When we got ready to walk out the door, I noticed he wasn't even wearing a coat. "Alan, get a coat. Its cold outside. And get something to wrap up in so you can stay warm in the car." If you're wrapped up good, you can sleep comfortably even if it's pretty cold outside.
Usually he grabs a warm throw. Thank goodness I checked before we got out the door. He had returned to his bedroom and was now wrapped up in his bathrobe.
One of those moments when I wanted to double over laughing.
When you're dealing with an alzheimer's patient, you have to learn to speak alzheimers. I don't speak it well so it leaves room for confusion on his part.
Most of the time we can share a laugh, whether the laugh's on him or on me. Those are good times. And because of them we have fewer bad times.
Twice a week I have to get up at 4:30 am, rush around, and get to town to pick up a friend. Because of a medical condition he's not allowed to drive right now and he's a professor at a college 38 miles from Eureka. We get him there by 7:00 am, rush to McDonald's for a bite and some more coffee. Then we head back to the college, find a parking place, put the seats back and catch up on our sleep in the car until time to pick up the professor at 10:30 am.
I try to get Alan to get his clothes ready the night before so he can just put them on when he hits the floor. Doesn't work, but I try.
When we got ready to walk out the door, I noticed he wasn't even wearing a coat. "Alan, get a coat. Its cold outside. And get something to wrap up in so you can stay warm in the car." If you're wrapped up good, you can sleep comfortably even if it's pretty cold outside.
Usually he grabs a warm throw. Thank goodness I checked before we got out the door. He had returned to his bedroom and was now wrapped up in his bathrobe.
One of those moments when I wanted to double over laughing.
When you're dealing with an alzheimer's patient, you have to learn to speak alzheimers. I don't speak it well so it leaves room for confusion on his part.
Most of the time we can share a laugh, whether the laugh's on him or on me. Those are good times. And because of them we have fewer bad times.
Saturday, February 18, 2012
THE DISAPPEARING FOOD
It was nice this past week to have another "good" week. This one lasted for almost 5 days. The good news is I finally got him to change out of the dirty jeans. The bad news is every time he has a few good days it seems like it's followed by a nose dive.
I was also able to convince him to get a badly needed haircut. The barber wanted to trim up his mustache and he refused. I stepped in and started insisting it be removed. Alan was pleased with the way he looked and so was I. He looked so much better and I think he's feeling better too.
One of the big problems has been with groceries. I can go to the grocery store, buy a loaf of bread, gallon of milk and a bag of oranges. Within 24 hours he has eaten the whole loaf of bread, making bread "wads". By the time I try to make me a sandwich or some toast, there's no bread left. The same thing happened last night with the disappearing bag of oranges. He had eaten the whole bag in one day. No milk left for cereal either. An 8-pack of coke, gone. I had bought us both snacks . Within 24 hours, he had consumed his and was working on mine that I had forgotten to hide.
There are many products I've discovered to help with this situation. I've had to lock the pantry to keep him from eating the macaroni, spaghetti and noodles right out of the package. I would go in to cook dinner and there would be nothing left to cook. I would have plenty of meat to make a dish, but nothing to add to it.
Brown sugar, canned goods would be eaten in the middle of the night when he wanders around. He would go through a 10 pound bag of potatoes in 2 days, eating them raw. Days and nights now have no meaning. I've tried keeping him on a schedule and not letting him go to bed before 9:00 p.m. Sometimes that works, but he spends too much time napping during the day.
I've found a place that has products just for situations like this. There are products you can use to lock your refrigerator, cabinets, even a way to fix stoves so they will turn off automatically if he turns the stove on and then leaves the kitchen.
But these products can be very expensive. I was grateful to find them though. You can buy them at CLICK HERE FOR The Alzheimers store The website could be a little more user friendly.
Alan has always loved jigsaw puzzles, preferring the 2-3,000 piece ones. Lately he hasn't been able to do those, so I tried a 750 piece. No luck, he doesn't even seem to be able to get the outside frame done. So I'm going to try a 300 piece and see how that works.
I'm trying to remember to take care of myself too. It's hard sometimes because it just feels like there's no energy left. But I did manage to give myself a much need pedicure this week, along with the foot bath massage thing. And I did my fingernails too. Sometimes you just have to force yourself to take care of yourself, but it's worth it when you're through. You just feel so much better. I'm determined to fight caretaker burnout as long as possible.
My next project is to try to figure out how to get some time for myself. I haven't looked into getting some respite care but I can see I'm going to have to do that before long. Guess I need to start with some phone calls to agencies on Monday and see what's available that I can afford since his disability doesn't start until the first of June. Hopefully, by the next blog I'll have some information I can pass along.
I was also able to convince him to get a badly needed haircut. The barber wanted to trim up his mustache and he refused. I stepped in and started insisting it be removed. Alan was pleased with the way he looked and so was I. He looked so much better and I think he's feeling better too.
One of the big problems has been with groceries. I can go to the grocery store, buy a loaf of bread, gallon of milk and a bag of oranges. Within 24 hours he has eaten the whole loaf of bread, making bread "wads". By the time I try to make me a sandwich or some toast, there's no bread left. The same thing happened last night with the disappearing bag of oranges. He had eaten the whole bag in one day. No milk left for cereal either. An 8-pack of coke, gone. I had bought us both snacks . Within 24 hours, he had consumed his and was working on mine that I had forgotten to hide.
There are many products I've discovered to help with this situation. I've had to lock the pantry to keep him from eating the macaroni, spaghetti and noodles right out of the package. I would go in to cook dinner and there would be nothing left to cook. I would have plenty of meat to make a dish, but nothing to add to it.
Brown sugar, canned goods would be eaten in the middle of the night when he wanders around. He would go through a 10 pound bag of potatoes in 2 days, eating them raw. Days and nights now have no meaning. I've tried keeping him on a schedule and not letting him go to bed before 9:00 p.m. Sometimes that works, but he spends too much time napping during the day.
I've found a place that has products just for situations like this. There are products you can use to lock your refrigerator, cabinets, even a way to fix stoves so they will turn off automatically if he turns the stove on and then leaves the kitchen.
But these products can be very expensive. I was grateful to find them though. You can buy them at CLICK HERE FOR The Alzheimers store The website could be a little more user friendly.
Alan has always loved jigsaw puzzles, preferring the 2-3,000 piece ones. Lately he hasn't been able to do those, so I tried a 750 piece. No luck, he doesn't even seem to be able to get the outside frame done. So I'm going to try a 300 piece and see how that works.
I'm trying to remember to take care of myself too. It's hard sometimes because it just feels like there's no energy left. But I did manage to give myself a much need pedicure this week, along with the foot bath massage thing. And I did my fingernails too. Sometimes you just have to force yourself to take care of yourself, but it's worth it when you're through. You just feel so much better. I'm determined to fight caretaker burnout as long as possible.
My next project is to try to figure out how to get some time for myself. I haven't looked into getting some respite care but I can see I'm going to have to do that before long. Guess I need to start with some phone calls to agencies on Monday and see what's available that I can afford since his disability doesn't start until the first of June. Hopefully, by the next blog I'll have some information I can pass along.
Tuesday, February 14, 2012
YOUR OWN ATTITUDE CAN RUIN YOU HAVING A GOOD TIME!
A friend who lives out of state, contacted me and asked if I could meet her for lunch at a fabulous restaurant about a 45 minutes drive from my house. We hadn't seen each other for several years and I was excited.
I told my ex-husband to go get cleaned up, wash his hair and put on clean clothes. Not leaving anything to chance, I picked out the clothes the night before he was to wear. Off he went. When I was ready to go, I noticed he had on the clean shirt and his hair was done. Running late, we got in the car and headed out.
About 20 minutes from our destination I happened to look at the pants he was wearing. Oh good grief! He was wearing the same pants he had worn for the last 2 weeks.
At that point I had 3 choices. Call my friend and say something had come up and I couldn't make it. Come unglued, go ahead and go to lunch and let it ruin my whole day. I chose the third choice…go ahead, have fun, forget his dirty pants and enjoy my visit with my friend.
I remembered something I had read just that morning. One of the things people with alzheimer's do is become attached to a piece of clothing. They will wear it for days and days, sometimes for weeks until you can get it away from them so you can wash it. It seems to be kind of like a little kid with their security blanket.
Another friend had called my attention a couple weeks before that, that Alan had been wearing those same jeans when she had been there a couple of weeks before that.
So I continued on to the restaurant, content that my friend wouldn't be offended. She wasn't, Alan was on his good behavior and I had a wonderful time. It would have been so easy for me to have deprived myself of a wonderful time. Next time I will remember to check and make sure those jeans don't go with us.
You probably can't do anything about the attitude of a person with alzheimers, but you can sure do something about your attitude. Don't let yourself become upset over things that don't matter. Your job is going to be hard enough without YOU adding to your own stress level. Relax and enjoy yourself every chance you get.
I told my ex-husband to go get cleaned up, wash his hair and put on clean clothes. Not leaving anything to chance, I picked out the clothes the night before he was to wear. Off he went. When I was ready to go, I noticed he had on the clean shirt and his hair was done. Running late, we got in the car and headed out.
About 20 minutes from our destination I happened to look at the pants he was wearing. Oh good grief! He was wearing the same pants he had worn for the last 2 weeks.
At that point I had 3 choices. Call my friend and say something had come up and I couldn't make it. Come unglued, go ahead and go to lunch and let it ruin my whole day. I chose the third choice…go ahead, have fun, forget his dirty pants and enjoy my visit with my friend.
I remembered something I had read just that morning. One of the things people with alzheimer's do is become attached to a piece of clothing. They will wear it for days and days, sometimes for weeks until you can get it away from them so you can wash it. It seems to be kind of like a little kid with their security blanket.
Another friend had called my attention a couple weeks before that, that Alan had been wearing those same jeans when she had been there a couple of weeks before that.
So I continued on to the restaurant, content that my friend wouldn't be offended. She wasn't, Alan was on his good behavior and I had a wonderful time. It would have been so easy for me to have deprived myself of a wonderful time. Next time I will remember to check and make sure those jeans don't go with us.
You probably can't do anything about the attitude of a person with alzheimers, but you can sure do something about your attitude. Don't let yourself become upset over things that don't matter. Your job is going to be hard enough without YOU adding to your own stress level. Relax and enjoy yourself every chance you get.
Friday, February 10, 2012
PLEASE BE A FRIEND TO YOUR CARETAKER FRIEND!
I'm in a unique position as a caretaker. I'm taking care of an EX-husband. Sometimes I have to remind myself to "Do unto others as I would have them do unto me". And, even though we are not married anymore, I feel sure if the situation was reversed, he would take care of me. Strange situation to be in.
One of the things I'm trying to guard against is caretaker burnout. It's extremely easy to spend so much time having to care for him, that I forget about me.
Good case in point…I noticed my complexion was starting to look pretty rough. Holy cow, how long had it been since I'd taken time to give myself a facial? Probably several months. It was easier to just take a wet washcloth and quickly run it across my face. Not a good sign. I looked in the mirror…my hair was about 3 inches too long. When had I stopped caring about my hair? I was running around looking like a wild woman.
It had been days since we had eaten anything except sandwiches because…when had I quit cooking?
It extremely important to recognize the signs and start taking action when you recognize you're not taking care of yourself. You know you feel better when you look good and you've gotten a good haircut.
I immediately ran to the bathroom, gave myself a facial. Haven't had time to get that haircut yet but I'm determined to make that phone call this morning.
I cooked a kick-ass dinner last night and will do the same tonight and tomorrow night.
I'm now making Alan stay up until 9 pm. He hates it but it seems to be giving him a full night's sleep. That way I'm not getting awakened at 3:30 am by lights going on because he has his days and nights mixed up.
And at this time I'm writing 8 different blogs because it amuses me and I'm hoping to build a readership. It's helping me keep my sanity.
And I have a good friend that will tell me the truth when she sees me slacking off on taking care of myself. She's helped me so much, doing things that I was too overwhelmed to tackle. At one point we attended a party. She told me she would take care of Alan, and that I was to go socialize and not worry about him. I did that and felt like a new person after a few hours of not having to worry what he was doing.
Remember how important it is to keep laughing, to take care of yourself too. And if you have a friend who is a caretaker for a family member, please take time to give her a little time off so she can go do something for herself. Your friend may not be able to afford to hire someone to give her time off. I can't until his disability starts in June. So be a real friend and give your friend a few hours out of the house to take are of herself. You have no idea how she'll appreciate you for it.
One of the things I'm trying to guard against is caretaker burnout. It's extremely easy to spend so much time having to care for him, that I forget about me.
Good case in point…I noticed my complexion was starting to look pretty rough. Holy cow, how long had it been since I'd taken time to give myself a facial? Probably several months. It was easier to just take a wet washcloth and quickly run it across my face. Not a good sign. I looked in the mirror…my hair was about 3 inches too long. When had I stopped caring about my hair? I was running around looking like a wild woman.
It had been days since we had eaten anything except sandwiches because…when had I quit cooking?
It extremely important to recognize the signs and start taking action when you recognize you're not taking care of yourself. You know you feel better when you look good and you've gotten a good haircut.
I immediately ran to the bathroom, gave myself a facial. Haven't had time to get that haircut yet but I'm determined to make that phone call this morning.
I cooked a kick-ass dinner last night and will do the same tonight and tomorrow night.
I'm now making Alan stay up until 9 pm. He hates it but it seems to be giving him a full night's sleep. That way I'm not getting awakened at 3:30 am by lights going on because he has his days and nights mixed up.
And at this time I'm writing 8 different blogs because it amuses me and I'm hoping to build a readership. It's helping me keep my sanity.
And I have a good friend that will tell me the truth when she sees me slacking off on taking care of myself. She's helped me so much, doing things that I was too overwhelmed to tackle. At one point we attended a party. She told me she would take care of Alan, and that I was to go socialize and not worry about him. I did that and felt like a new person after a few hours of not having to worry what he was doing.
Remember how important it is to keep laughing, to take care of yourself too. And if you have a friend who is a caretaker for a family member, please take time to give her a little time off so she can go do something for herself. Your friend may not be able to afford to hire someone to give her time off. I can't until his disability starts in June. So be a real friend and give your friend a few hours out of the house to take are of herself. You have no idea how she'll appreciate you for it.
Saturday, February 4, 2012
WE CAN GET THROUGH THIS IF WE REMEMBER TO KEEP LAUGHING
It's been two years since Alan lost that first job. He doesn't believe anything is wrong. Most of the time he can't remember anything for even a couple of minutes. I guess he doesn't remember that he's not remembering. Most of the time I feel like I jumped down the rabbit hole and landed in wonderland.
One of the things that happened back before we knew anything was wrong: He was telling some wild story that had supposedly happened to him. I couldn't believe what I was hearing. This was one of the things that had happened to ME on one private investigation case I was working on. I thought he was just lying through his teeth and I called him on it in front of the people. I realize now he was already losing touch with reality.
If you are taking someone to be tested for any kind of dementia, WARNING….they'll get to the doctor and lie through their teeth to prove nothing is wrong or if they don't remember something, they'll just make up a story. Some of them are good enough to fool the doctor. You must let the doctor know what's happening so he/she can see through the smoke screen.
He was afraid of being diagnosed with either Parkinsons Disease or Alzheimers, since several in his family had died from both diseases. So before we went to the first doctor, he asked me a question he had already asked several times that day. What day is this? What year is this? He completely fooled that young doctor.
When we went to the free clinic, he tried the same thing. This time I ignored the questions. When we were waiting to go into the doctor, he picked up a Newsweek that had a huge picture of Michelle Obama on the front.
When the doctor asked him what day it was, he quickly tried to glance at his watch. The doctor and I both reacted at the same time to cover Alan's watch. He gave the wrong answer having no idea what day it was. What year is it? Uh…2009. Who is the president? Uh…Nixon…but I know who his wife is. It's Michelle Obama.
He couldn't repeat a list of things back to the doctor, couldn't name 5 wild animals, etc. But he could still play the piano like a pro. That was something he had started studying at age 5, so it was still in his memory.
This was the doctor who thought it was frontal lobe dementia but just wasn't sure.
When we got back out to the car, Alan was a happy camper. He hadn't heard Parkinson's or Alzheimers, the two things he feared. Frontal lobe dementia meant nothing to him so he was happy.
Sometimes he would have two or three good days where everything seemed normal. It concerned me…was he just making this whole thing up? Then it seemed he would take a nose dive. I didn't know, at that time, this was a sign of mid-critical alzheimers.
So it shouldn't have surprised me when the diagnosis came back frontaltemporal complicated alzheimers.
At the memory clinic, the doctor came in to give me the diagnosis while another doctor finished "testing" Alan to keep him busy. I was horrified at the diagnosis, didn't know what I was going to do, but didn't want to start crying and alarm Alan when we got in the car to go home. I felt like I had a lead ball laying in the bottom of my stomach. I remembered what the Bible says "Do unto others as YOU would have THEM do unto you."
Alan looked at me, with a smug smile, and said, "I passed the test!" I started rolling with laughter. Then it hit me, "Alan we can get through this just fine if we remember to keep laughing."
One of the things that happened back before we knew anything was wrong: He was telling some wild story that had supposedly happened to him. I couldn't believe what I was hearing. This was one of the things that had happened to ME on one private investigation case I was working on. I thought he was just lying through his teeth and I called him on it in front of the people. I realize now he was already losing touch with reality.
If you are taking someone to be tested for any kind of dementia, WARNING….they'll get to the doctor and lie through their teeth to prove nothing is wrong or if they don't remember something, they'll just make up a story. Some of them are good enough to fool the doctor. You must let the doctor know what's happening so he/she can see through the smoke screen.
He was afraid of being diagnosed with either Parkinsons Disease or Alzheimers, since several in his family had died from both diseases. So before we went to the first doctor, he asked me a question he had already asked several times that day. What day is this? What year is this? He completely fooled that young doctor.
When we went to the free clinic, he tried the same thing. This time I ignored the questions. When we were waiting to go into the doctor, he picked up a Newsweek that had a huge picture of Michelle Obama on the front.
When the doctor asked him what day it was, he quickly tried to glance at his watch. The doctor and I both reacted at the same time to cover Alan's watch. He gave the wrong answer having no idea what day it was. What year is it? Uh…2009. Who is the president? Uh…Nixon…but I know who his wife is. It's Michelle Obama.
He couldn't repeat a list of things back to the doctor, couldn't name 5 wild animals, etc. But he could still play the piano like a pro. That was something he had started studying at age 5, so it was still in his memory.
This was the doctor who thought it was frontal lobe dementia but just wasn't sure.
When we got back out to the car, Alan was a happy camper. He hadn't heard Parkinson's or Alzheimers, the two things he feared. Frontal lobe dementia meant nothing to him so he was happy.
Sometimes he would have two or three good days where everything seemed normal. It concerned me…was he just making this whole thing up? Then it seemed he would take a nose dive. I didn't know, at that time, this was a sign of mid-critical alzheimers.
So it shouldn't have surprised me when the diagnosis came back frontaltemporal complicated alzheimers.
At the memory clinic, the doctor came in to give me the diagnosis while another doctor finished "testing" Alan to keep him busy. I was horrified at the diagnosis, didn't know what I was going to do, but didn't want to start crying and alarm Alan when we got in the car to go home. I felt like I had a lead ball laying in the bottom of my stomach. I remembered what the Bible says "Do unto others as YOU would have THEM do unto you."
Alan looked at me, with a smug smile, and said, "I passed the test!" I started rolling with laughter. Then it hit me, "Alan we can get through this just fine if we remember to keep laughing."
Friday, January 20, 2012
The Disability Merry-go-round
I need to share my experience trying to get a diagnosis and attempting to get Alan on disability.
The first doctor didn't have a clue. Even though Alan was way past early-onset, this doctor did some blood tests for everything else and assured us he was just fine. No signs of either parkinsons or alzheimers. Like I said, the man didn't have a clue.
I told a nurse in that clinic what had happened and what I was observing in Alan. She advised me to go to the local free clinic and speak to the doctor about what had happened (He was head of the clinic where the first diagnosis had happened).
This doctor took much time talking to Alan, getting responses then taking a walk with him. He said Alan didn't walk like he had alzheimers but he definitely was confused. His best guess was frontal lobe dementia but he just wasn't sure. He sent us to the memory center for testing and the hospital for an MRI. The MRI showed there was shrinkage in the frontal lobe, certainly not a good sign.
Going home I hit the internet to research both alzheimers and frontal lobe dementia. I was confused by what I found. He fit most of the signs of being in the mid-critical alzheimers but not all of them. Then he also fit most of the signs of frontal lobe dementia. About the time I'd decide he had one, I'd change my mind and decide it must be the other one.
The MRI was in at the end of summer but it was the last of November before we could get into the memory center. Three different doctors…a behavioral specialist, a psychologist, and a neurologist. The final dianosis: Frontaltemporal complicated alzheimers and essential tremor. They said it was no longer safe to leave him alone.
This left me having to quit work because Alan had no money or insurance, and I only had my social security. If I left him alone and something happened, I could now be prosecuted for abandonment. Talk about a rock and a hard place.
I finally got him approved for food stamps (which have not started as I write this).
The doctors all told me it would take about 2 years to get him on disability. Now there was some good news that made me want to puke on my shoes….
I read in the news that a new law had been passed…if a person had frontal lobe dementia, disability could be expedited.. And until that happens they will get you on SSI until disability starts.
Yeah right. Another brick wall.."We don't show anything in his records about alzheimers." So I did the only thing left…I cried, and I snotted, and I cried and I couldn't stop and I told the woman the whole story between sobs. I apologized, then I cried some more and I snotted some more. I felt like I had just hit rock bottom.
She was very sweet. "I'm just going to go ahead and approve this before we hear from the doctor. And you just send your divorce papers as soon as you get the envelope I'm sending you. But I'm approving it right now."
The first doctor didn't have a clue. Even though Alan was way past early-onset, this doctor did some blood tests for everything else and assured us he was just fine. No signs of either parkinsons or alzheimers. Like I said, the man didn't have a clue.
I told a nurse in that clinic what had happened and what I was observing in Alan. She advised me to go to the local free clinic and speak to the doctor about what had happened (He was head of the clinic where the first diagnosis had happened).
This doctor took much time talking to Alan, getting responses then taking a walk with him. He said Alan didn't walk like he had alzheimers but he definitely was confused. His best guess was frontal lobe dementia but he just wasn't sure. He sent us to the memory center for testing and the hospital for an MRI. The MRI showed there was shrinkage in the frontal lobe, certainly not a good sign.
Going home I hit the internet to research both alzheimers and frontal lobe dementia. I was confused by what I found. He fit most of the signs of being in the mid-critical alzheimers but not all of them. Then he also fit most of the signs of frontal lobe dementia. About the time I'd decide he had one, I'd change my mind and decide it must be the other one.
The MRI was in at the end of summer but it was the last of November before we could get into the memory center. Three different doctors…a behavioral specialist, a psychologist, and a neurologist. The final dianosis: Frontaltemporal complicated alzheimers and essential tremor. They said it was no longer safe to leave him alone.
This left me having to quit work because Alan had no money or insurance, and I only had my social security. If I left him alone and something happened, I could now be prosecuted for abandonment. Talk about a rock and a hard place.
I finally got him approved for food stamps (which have not started as I write this).
The doctors all told me it would take about 2 years to get him on disability. Now there was some good news that made me want to puke on my shoes….
I read in the news that a new law had been passed…if a person had frontal lobe dementia, disability could be expedited.. And until that happens they will get you on SSI until disability starts.
Yeah right. Another brick wall.."We don't show anything in his records about alzheimers." So I did the only thing left…I cried, and I snotted, and I cried and I couldn't stop and I told the woman the whole story between sobs. I apologized, then I cried some more and I snotted some more. I felt like I had just hit rock bottom.
She was very sweet. "I'm just going to go ahead and approve this before we hear from the doctor. And you just send your divorce papers as soon as you get the envelope I'm sending you. But I'm approving it right now."
Thursday, January 12, 2012
I WAS GETTING CRAZY AS A BEDBUG
Alan was 30 when we got married and was so forgetful we called him the absent minded professor. One of the warning signs: When the person keeps consistently losing things. But Alan had always been that way. Every morning all the kids and I had to go on an all-out search for either Alan's belt, or his wallet, or his notebook. EVERY day. He was the most disorganized person I had ever met.
Another sign: Not being able to remember people's names. Alan always tried to call people by their name. I don't think I EVER saw him get one right.
Warning sign: Total lack of empathy. We started dating when he was 23. Thinking back I remember many times thinking he never had ANY empathy for anyone. He wasn't mean, he just didn't seem to have "feelings". He would get angry at his dad but never expressed any anger towards me. He seemed to be mostly lacking emotions, but then he had started using drugs when he was young.
He also started drinking in college and was a full blown alcoholic by the time I met him. I didn't know that. I knew he drank a lot. But at that time I knew nothing about alcoholism. It was only after we married that I realized he was having blackouts when he drank. We married in 1981 and Alan sobered up 13 months later.
We did have lots of fun, but because some of his quirks, and even though we lived in the same house, we became emotionally estranged around 2003. He had always shown a lack of respect for other people's possessions. If it was in his house, it was his.
Around 2008 I could tell he would have been in my things while I was gone. He'd always deny it but since he never closed a drawer it was pretty obvious. By 2010 he would constantly rummage through all of my things while I was at work. He was driving me crazy. That's when I divorced him. I finally had enough of what I was calling the disrespect and the lying. His response whenever I asked him if he had done something, it was always the same. "I don't remember." Or he would just outright lie. At least that was MY interpretation.
He walked in one day smiling and announced he had just gotten fired. I asked the obvious question. "Why?"
"I don't know," he said calmly.
"Alan, they had to tell you why", I said.
Same response and I knew I had be lied to again. "I don't think they told me. I forgot what they said."
Two months later same scenario. Walking in he announced he had lost his other job. Second verse, same as the first. This time his response, "I don't know but they said I should have called a supervisor."
At this point Alan was home all the time. He was searching for a job. He had to keep a list of every place he applied. The first place he tried was the local market.
A week later he said he was going job hunting. I asked where he was going to apply. "The (local market)." I told him he had done that the week before. He went there anyway because he had no memory of already going.
Third week - "I think I'm going up to (local market) today and apply for a job."
All of a sudden, Alan started following me all over the house. Strange because he had always been a loner and so had I. I couldn't leave the room to go to the bathroom that he wasn't right behind me. He would follow me to the kitchen and stand right there while I cooked. Where ever I went, he went. It was driving me out of my mind. I had no clue this was a symptom called "shadowing".
I told him to just stay home and take care of things while I worked and that would be a great help to me. He would do dishes. The problem was every time I started to cook dinner, I had to go on a search for my pans, my utensils, etc. I might find one pan in the cabinet with the bowls. I might find a utensil in the pantry with the food. This was the routine EVERY SINGLE TIME I had to cook a meal. When I'd ask where he put something, same answer. "I don't know."
He would do things that would end up with me screaming at him. He would just stand and look at me with this dumb looking smile on his face like I was being extremely amusing. I didn't realize this was a reaction because he didn't even hear or understand what I was saying.
He was starting to get a look in his eyes like the lights were all on but nobody was home. That's when I started doing some research about alzheimers. Alan had no money and I couldn't afford to take him to a doctor. He claimed to have insurance, but he didn't. He just remembered getting some at the first job where he was fired.
Alan had never been much of an "eater", but all of a sudden he began to go through a loaf of bread a day by squeezing it tightly into wads and eating it. He'd sneak into the spaghetti, maccaroni and noodles and eat them uncooked right out of the package. I would go in to cook a meal and everything I needed would have been eaten. If I went to the market and bought enough groceries for a week, he would start eating. Everything would be gone by the next day. And he was not gaining weight.
He would load the dishwasher, then forget he had just loaded it. All the dishes, glasses, cups and silverware would be put put back in the cabinet still dirty.
At one point a friend of mine who is an R.N. came to spend the night. During that visit she said "Something is wrong with Alan." If you talked to him, he would seldom answer. He never initiated a conversation or took part in one.
Alan was still sweet to me. He would make coffee of a morning and bring me a steaming cup. I always enjoyed it and never even knew the cup was dirty until I got to the bottom of that cup. By then it was too late to worry about it.
Her next visit was a month later. "You've got to get him to a doctor. I can tell a big difference since I saw him a month ago." She blew a hole in my boat that was still hoping it was just Alan being his normal eccentric self.
Another nurse told me to make him an appointment at a local free clinic. Alan didn't think anything was wrong. Me? I was convinced I was getting crazy as a bedbug.
Another sign: Not being able to remember people's names. Alan always tried to call people by their name. I don't think I EVER saw him get one right.
Warning sign: Total lack of empathy. We started dating when he was 23. Thinking back I remember many times thinking he never had ANY empathy for anyone. He wasn't mean, he just didn't seem to have "feelings". He would get angry at his dad but never expressed any anger towards me. He seemed to be mostly lacking emotions, but then he had started using drugs when he was young.
He also started drinking in college and was a full blown alcoholic by the time I met him. I didn't know that. I knew he drank a lot. But at that time I knew nothing about alcoholism. It was only after we married that I realized he was having blackouts when he drank. We married in 1981 and Alan sobered up 13 months later.
We did have lots of fun, but because some of his quirks, and even though we lived in the same house, we became emotionally estranged around 2003. He had always shown a lack of respect for other people's possessions. If it was in his house, it was his.
Around 2008 I could tell he would have been in my things while I was gone. He'd always deny it but since he never closed a drawer it was pretty obvious. By 2010 he would constantly rummage through all of my things while I was at work. He was driving me crazy. That's when I divorced him. I finally had enough of what I was calling the disrespect and the lying. His response whenever I asked him if he had done something, it was always the same. "I don't remember." Or he would just outright lie. At least that was MY interpretation.
He walked in one day smiling and announced he had just gotten fired. I asked the obvious question. "Why?"
"I don't know," he said calmly.
"Alan, they had to tell you why", I said.
Same response and I knew I had be lied to again. "I don't think they told me. I forgot what they said."
Two months later same scenario. Walking in he announced he had lost his other job. Second verse, same as the first. This time his response, "I don't know but they said I should have called a supervisor."
At this point Alan was home all the time. He was searching for a job. He had to keep a list of every place he applied. The first place he tried was the local market.
A week later he said he was going job hunting. I asked where he was going to apply. "The (local market)." I told him he had done that the week before. He went there anyway because he had no memory of already going.
Third week - "I think I'm going up to (local market) today and apply for a job."
All of a sudden, Alan started following me all over the house. Strange because he had always been a loner and so had I. I couldn't leave the room to go to the bathroom that he wasn't right behind me. He would follow me to the kitchen and stand right there while I cooked. Where ever I went, he went. It was driving me out of my mind. I had no clue this was a symptom called "shadowing".
I told him to just stay home and take care of things while I worked and that would be a great help to me. He would do dishes. The problem was every time I started to cook dinner, I had to go on a search for my pans, my utensils, etc. I might find one pan in the cabinet with the bowls. I might find a utensil in the pantry with the food. This was the routine EVERY SINGLE TIME I had to cook a meal. When I'd ask where he put something, same answer. "I don't know."
He would do things that would end up with me screaming at him. He would just stand and look at me with this dumb looking smile on his face like I was being extremely amusing. I didn't realize this was a reaction because he didn't even hear or understand what I was saying.
He was starting to get a look in his eyes like the lights were all on but nobody was home. That's when I started doing some research about alzheimers. Alan had no money and I couldn't afford to take him to a doctor. He claimed to have insurance, but he didn't. He just remembered getting some at the first job where he was fired.
Alan had never been much of an "eater", but all of a sudden he began to go through a loaf of bread a day by squeezing it tightly into wads and eating it. He'd sneak into the spaghetti, maccaroni and noodles and eat them uncooked right out of the package. I would go in to cook a meal and everything I needed would have been eaten. If I went to the market and bought enough groceries for a week, he would start eating. Everything would be gone by the next day. And he was not gaining weight.
He would load the dishwasher, then forget he had just loaded it. All the dishes, glasses, cups and silverware would be put put back in the cabinet still dirty.
At one point a friend of mine who is an R.N. came to spend the night. During that visit she said "Something is wrong with Alan." If you talked to him, he would seldom answer. He never initiated a conversation or took part in one.
Alan was still sweet to me. He would make coffee of a morning and bring me a steaming cup. I always enjoyed it and never even knew the cup was dirty until I got to the bottom of that cup. By then it was too late to worry about it.
Her next visit was a month later. "You've got to get him to a doctor. I can tell a big difference since I saw him a month ago." She blew a hole in my boat that was still hoping it was just Alan being his normal eccentric self.
Another nurse told me to make him an appointment at a local free clinic. Alan didn't think anything was wrong. Me? I was convinced I was getting crazy as a bedbug.
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