O.K. so here I am again with more problems (like we all have) and need some advice. My husband was diagnosed 5 years ago this past February so his decline has been steady but up until just the past few months tolerable. The newest thing now is that he refuses to put his pajamas on to go to bed. He also insists on leaving the lamp in his room on because that gives him heat in his bedroom. I might add that his room is hotter than I could ever stand to sleep in. He strips the bed of the blanket and top sheet and goes to bed with nothing over him. It is almost impossible to get him to change clothes let alone shower. Showering him is an all morning job if we are allowed to do it at all. We do manage to get his hair washed and shave him.
He is on Aricept and Trazodone before bedtime. The doctor also had him on Risperdal but I had to take him off due to violent behavior. It was unbelievable!!
The other problem is he wants to eat all the time and I do mean all the time! I know that some Alzheimer patients forget they eat and I am wondering if this is what is going on. He just won't leave you alone until you feed him and I don't mean a snack either. I am at my wits end with this problem and I cannot spend my entire day and night in the kitchen. Oh and also, he gets up in the middle of the night and eats a bowl of Wheaties with enough sugar on it to choke a horse. Yipe! I could use a little help with suggestions please.
Thanks in advance for any helpful suggestions,
If he wants to sleep naked on a sheetless bed in a hot room with the light on, let him. At least he goes to bed - my grandmother would stay up all night!
The bathing part is more difficult. Do you shower him? He might be afraid to stand in the shower...my grandmother was more comfortable sitting on a shower chair. My mother used a handheld shower head to wet and rinse her. How long is his short term memory? You could trick him into bathing by saying that you are going somewhere, hopefully after he has showered and dressed he'll be on to something else.
These problems are almost universal in AD. My Mom ate very erratically, one day a whole box of chocolates, then nothing. She never knew if she had eaten or not.
I prepared food and if she ate it, fine, if not, fine. She was neither overweight nor underweight so I ignored the odd eating habits.
I agree that PJs or not, hot room or cold, can be ignored. Getting the person to bathe is a hard one. Until Mom went to the NH she was bathing too little. It was such a battle that we just let it go. During the 3 months she lived with my brother and SIL, my wonderful SIL took showers with Mom whenever she could persuade her.
More important are taking meds incorrectly, driving, giving away money or getting 'taken' by some schemer, getting lost. It was Mom's wandering off the beaten track and getting lost that caused us to hire a home health aide for her. Then she said she felt like a prisoner, not allowed to go out alone. But she had forgotten what the red or green lights mean, and had walked in front of moving traffic a few times. This was in New York City! I remember how appalled I was when my sister said 'her freedom is more important than her safety - if she goes out and gets hit by a truck, she had a great life." I thought, and what about the life of the driver who hits her, or the passengers in a car that gets hit while someone swerves to avoid hitting her?
Drugs - Mom either forgot them, took too many, or not enough. I had to dole out one day's supply at a time, and since she was afraid of heights, I kept the pill bottles on a very high shelf. One day while I was at work she decided she hadn't had her pills, got up on a chair on top of a stepstool and a telephone book and got her pills down. She felt very proud of herself too. I don't know how many she took, or maybe none at all.
You have to keep one step ahead of the patient, and that is hard to do, especially if they are keeping you awake all night.
Thanks for your input. I guess I omitted the fact that when he went to bed he was fully clothed. He wears his clothes all day, sleeps in them that night and then wears them, sleeps in them, etc. etc. It's like pulling eye teeth to get him in clean clothes. I'm having so much trouble dealing with this because he was always so clean and neat about himself and his clothes, etc. I guess if he would stay in bed at night that would help but he gets up many many times during the night and eats some of the time too.
I realize that nothing I do will change anything but it just helps to vent a little.
I have found that light weight (for summer) or fleece for winter warm -up type pants work well for my mother and then if she doesn't want to change for bed they are comfortable for sleep. I ordered some pants from Lands End with nice long sleeve shirts to mix and match. The pants have elastic waist and pockets which are a must for her. She is cooperative most of the time now as long as she is on her seroquel.
She also is hungry all the time. I believe the meds make her hungry. I just try to keep healthy food that she can get for herself like peanut butter crackers, fruit, applesauce cups or pudding cups in the frige. She also loves cereal and it is healthy. We have started eating dinner later since the daylight savings time so there is not as much "grazing time" before bedtime.
A shower chair in the tub with a handheld shower seems to work well for her but she doesn't object to it at this time. I have heard that some LO's are afraid of the water and the white bath tub. I have seen colored bath mats recommended for the tub or shower floor.
It is a daily struggle. Just do the best you can. That's all that matters.
Thanks for the suggestions. He has a closet full of clothes of all types. I have tried everything but he is so opinionated and stubborn it is impossible. We have a walk in shower that he has always liked in one of our bathrooms so can't improve much on that. He has his choices and chooses not to make any!
As for food, I buy ensure by the case and he drinks it all day long. I started buying that when he was so thin (even though he ate really well) he didn't seem to gain any weight. Now he has put on some weight because he drinks the ensure and eats all day and night long. Also, as is common, he eats ice cream by litterely the gallons.
Now, as of just a couple of nights ago, he has decided that he no longer wants to sleep in his bed or his room for that matter. Just roams around all night long.
Go figure, it is just a tough situation.
Misery loves company and this board is so good for getting ideas and just plain venting.
You say he has choices and chooses not to make any. Wrong. He has choices but CANNOT make any. One of the first things to go when someone gets AD is the ability to choose. This is why nursing home life often comes as a huge relief to them - they can finally stop having to make impossible decisions, but now get everything decided for them.
They see a closet full of clothes and the idea that they now have to choose something to wear is so daunting that it is easier to leave yesterday's clothing on.
They see a walk in shower but the prospect of showering is too scary: getting their clothes off, stepping into the shower, turning it on and neither burning nor freezing their skin, then how is soap used and what is shampoo for? Then drying off with a towel, they may not remember that you have to do that, and on top of that, figuring out what clothes to put on next. It is all too daunting, they cannot do it. And then someone comes along and scolds them for not being clean enough or wearing a spring coat in midwinter.
From the patient's point of view everything they do is completely logical, and then the whole world acts as if they are delusional.
I only write these words to help you to understand - it isn't that he refuses to make sensible (or any) choices, it is that he doesn't know how. He has forgotten.
It reminds me of when Mom lived with me. I was trying to find activities she could do to keep her busy. She's a very artsy-craftsy lady. So I purchased one of those children's bead sets. Hundreds of beads in a variety of shapes and colors. I thought she'd enjoy many hours of just stringing them for necklaces.
After several hours of sitting and staring at the beads, I asked her why she hadn't threaded a necklace. She couldn't decide which one to start with. I tried threading a few, getting her started (I thought), but nope, she couldn't do it. She simply couldn't decide which bead to use next. The box was put away and she never opened it again. It was simply too many choices.
Of course you are both right and I really know all this is true. I just sometime have to be reminded of how hard it is for the AD person. My problem is that I get so frustrated and feel so inadequate that a reminder is in order.
I'll share a couple of things that helped me get dad to shower and change when he lived with me.
Me: Dad, I need to go to the grocery store and my back is hurting. Could you please go with me and help with the groceries?
Me: Thanks. Oh, I forgot you said you wanted to shower. No problem. I'll just finish up what I was doing in the kitchen while you shower and shave.
He never said he wanted to shower but he never wanted me to know he forgot things. So he usually showered when I said that unless he was really tired. And before he got into the shower, I always had clean clothes in the bathroom waiting for him. Later, as dad got worse, I had to sneak in the bathroom while he was showering and take his dirty clothes and promtly put them in the washer. He is now at the point where he can't tell what's clean or dirty. And if two shirts and two pair of pants are lying out for him to choose, that's a good two hour choice before he comes out of his room.
I'm glad you know that we're here for you. But I hope you have some family or friends helping you too. Caregiving is so very exausting both physically and mentally. I hope you have help.
Yes, any caregiver needs help on a regular basis. Someone else to take over his care for a few hours, a day or a weekend. My brother did that for me while I was Mom's caregiver. He took her to his house for 2 days and I could breathe a sigh of relief, get a full night's sleep, or run out and do something else besided Momcare .. it kept me sane!