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.
Saturday, March 31, 2012
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.
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