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.
Friday, February 24, 2012
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."
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