My 71 yr old husband was diagnosed 2 yrs ago with dementia not-otherwise-specified, but it is probably vascular dementia given several TIA-like episodes. We then moved from Atlanta to an independent living community in TN near our children and his sister. This way I can travel and work (mostly from home, but some travel involved) and he can have meals and not need to drive anywhere. However, he complains constantly that he doesn't belong here with all these old people. It is true he is the youngest person here (I am 75 but in excellent health), and that more than half of the residents have walkers, but their minds are often lots sharper than his, and I rather like it here. Besides, I didn't want to move again anytime soon. We won't get any younger, and his dementia will probably worsen as well. He won't take part in any of the outings because his digestion is so unpredictable due to GI surgery in 2007. He won't attend any activities here either. He can't play bridge anymore due to the loss of "executive function" and he has some strange eye-hand coordination problems. He can't arrange or hold onto his cards or tell the two same color suits apart. He also can't hold a sandwich together, and complains that the kitchen makes sloppy sandwiches. He has trouble with the occasional buffets, as he can't tell what is in the bowls or get it to his plate without spilling. He wants to eat everything with a spoon, and sometimes his spoon has a huge amount on it, other times nothing at all. His memory for people and places isn't all that bad, but his memory for processes is terrible, and he can't handle his finances at all. He also just bought a $1000 computer for seniors that I think is very user-friendly, but he still can't figure it out and asks me every day how to check his email. But he won't let me send it back! It's just another thing I have to do, like finding a movie for him on TV each night. He has lots of DVDs but can't remember how to use the player, so I have to do that too. I asked him where he wants to go, and he said "To the Past." But that isn't an option. I told him if he wanted to move he could find a place among the young that he thinks he is part of and I will go back to Atlanta. He now says that was my plan all along to get rid of him. That's stupid, I would never have left Atlanta at all, but I thought this would work out. The whole time we were in Atlanta, even before the dementia dx, he said he wanted to go back to TN when we retired. However, he shouldn't drive because of depth perception issues--and he doesn't, except for the mile to the barber's once a month to keep in practice for "when things get better." He says we should both move to a regular apartment--where of course I would have to go back to shopping and cleaning and cooking, which I don't have to do now...and I couldn't travel (He refuses to stay with his family). I wish he would try to get along with the residents here instead of constantly complaining. Lurking in the background for me at least--he thinks Aricept and Namenda have "almost" cured him--is the prospect that there will be future TIAs and things will get worse. Maybe I need therapy!
I don't think it could be up to you to decide to stay. A demented person has to be sheltered. He is among people who are capable so he feels let down. As you know, he has many problems that needs caregiving. He certainly thinks he can go back to your own apt again. But he needs assisted living, not independent. Later, he will need memory unit. I don't know his stage but if he cannot do these things physically, he needs help and independent living is not helping him.
You could hire part-time caregiver to help him eat and deal with his health issues.
It is not that he doesn't want to get along with the residents. He cannot do that because he doesn't have the same cognition level like other residents!
You need to realize that he needs special care for dementia. For dementia, he will need AL and memory unit later on.
Arleeda... everything you went through in your post is because of the dementia. Please stay put with your family where there is a support system for you, and for him. Please believe me when I say that he will not be happy anywhere. The dementia has affected so much of his cognition that he was right when he told you that he will only be happy in the past... and you are right in that you can not take him there. If you are happy, it is better to stay right where you are because even if you took him back to Atlanta, or anywhere else, you would have the same issues because the dementia is the cause and not going away.
He is sure he doesn't belong there because he does not see himself as he is. He is what his mind tells him. He may be young and viral and ready to go to work. There will become a time when he will not know the man in the mirror because he is not that old man. It is a trick of the mind that dementia plays. I remember my Dad at 85 (with vascular dementia) challenging his 20 year old grand daughter to a race and absolutely sure he would beat her. He couldn't even walk to the dinning room without limping.
Know that his dementia WILL get worse. It is a progressive disease and you will need the additional assistance you have to get through this.
New socialization is difficult for those with dementia. They have trouble understanding what is being said, especially if more than one person is talking. Music, confusion, or other noises only makes it worse. They do much better one on one.
You are right that the executive function goes quickly. But the hand eye coordination is not strange in dementia. It is common! As for making excuses, those with dementia are masters. It is not their fault that they can not hold the sandwich, it is the fault of the cook for making a sandwich that falls apart. If he is having difficulties you might want to lead him to options that are not likely to fall apart. The color perception is also typical. Red is something they do seem to see longer but colors will tend to have less meaning. Along with this is a deterioration of depth perception. White toilets against white walls will disappear. Dark rugs will appear as holes. Floor changes become steps up or down. They may not even venture from a white floor to a dark carpet. Color matching goes away as well. To complicate this peripheral vision goes away. It is as if they are looking through toilet paper tubes. They only see what is directly in front of them. This can cause difficulties with eating. If the plate is a little further away it does help. Spoons are easier to manager than forks. Yes, sometimes they get too much and sometimes not enough but their ability to judge proportions is also impaired. Along with all that goes the ability to understand numbers. Many times the inability to handle finances is one of the first things that is noticed. They totally lose the concept of numbers. This can also cause a problem with bridge.
As for the computer, anything new is almost impossible. Electronics in particular seem to be troublesome to those with dementia. Computer usage goes quickly and he will soon just ignore the machine. Phones, especially cell phones if they are a recent addition will become a problem. He will hold on to the old fashion land lines longer. TV remotes will become a complete mystery and eventually he will confuse the remote with the phone! Even if he is holding on to the long term memories of people and places, his new memories (and his ability to learn) are very limited. He honestly doesn't remember what you just told him 10 minutes ago, even if he remembers something that happened 5 or 10 years ago. Yes, his ability to process goes quickly. Partially because of the current memory issues. Judgement also lessons. He can't use the computer but he wants it and will keep it.
With all this comes the paranoia. His brain is misfiring. He is only remembering some of what is around him and his brain will fill in the blanks. Even if you tell him differently, it will be hard to convince him that he is wrong. His reality is as real to him as yours is to you. He is there, he is not content because of the disease, so it had to be some conspiracy to get rid of him or get him out of the way. Makes sense to him even if it doesn't to you. All you can do here is constantly reassure him that you are both there, it is the right place, and you will continue to be with him.
If necessary tell him, as I did my Mom (Alzheimer's), that he needs to stay with you there until things do get better. There is no reason to do away with his hope but you know it is unrealistic to believe that it will go back to the old normal. You do not need therapy, you need the help you are getting and time away from him So please know that all you are see is what dementia is! It will get worse and you will need those services you enjoy there even more. It is tough for sure (having lived through both Mom and Dad) but it is possible to do with help. One thing I would suggest for you is to find your local Alzheimer's Support Group and go. There you will meet others who are going through the same thing you are. Amazingly it helps to know that nothing he is doing is strange or unusual... just part of the disease. It also helps to know you are not the only one going through this journey. You are NOT alone
I may sound a little harsh in the first post, but I just want to point out that your husband may need a better place. I agree that he cannot go back to the old way. This new home is closer to the family so it is good. You did well to move here.
If this place has an assisted living or memory unit, you can consider to move him there to get help. Or get home care to hire a private caregiver to feed him or help him.
Deb, thanks for the information, especially about the visual issues--which are really the first thing I noticed as being wrong. He started stumbling because he couldn't see the curb and fell twice. That has improved. His short term memory is still reasonably good--at least he was able to memorize our new address and phone number is short order, and he can remember who called while I was out (and he will write it down if it is someone he doesn't know.) The thing that finally drove us to the neurologist was a second episode of hallucinations, when I was gone for a few days and he became convinced there were people in the house trying to steal his money. The first time this happened he was taking valium prescribed by his internist for anxiety, so he was taking off that--the second time even the internist thought he needed a neurologist. Now he takes Aricept and Namenda and actually is better than he was before he started taking them. The tunnel vision thing may have started much earlier than I realized, too--for a long time he didn't see something unless he was looking for it....like in the freezer or pantry. Or he would go the a movie ticket counter and ask the fare when it was posted quite clearly. He also always wanted to go to the same restaurants and order the same things--later I realized it was because he had problems navigating a menu. I just wish I could be more patient instead of getting angry. He says I have a horrible temper, and he is right!
Arleed, you did say he has vascular dementia With Vascular Dementia the symptoms depend on the part of the brain that is affected. Dad had Vascular Dementia and his progression was very different from Mom's Alzheimer's. His short term memory was much better than hers. He did have holes in those memories. He would remember I called but also tell Mom that I said I was going home on X day when that didn't happen. I think his wishes converged with what he knew There were things he forgot and others that he remembered well. If the TIA/Vascular problems are in the visual area of the brain then he will have more difficulty with visual acuity and processing. The other thing I noticed was that the progression was not constant. Mom was on a rapid downhill decline. Dad's was more in spits and spurts. He would seem to plateau for a while and then have a sudden decline. Those declines were usually in conjunction with some cardiovascular event. He also took the Namenda/Aricept combination. It may have helped him. It doesn't not reverse or even delay the progression of the disease, but it does help with the snaps transferring of information between brain cells. So the ones that are working, work a little better.
Hallucinations/delusions are a hall mark of Vascular Dementia along with paranoia. Dad had them. He was up at night checking on "the boys" or making sure they were "doing right" while killing the hogs. He would lock up the house at sundown. That included pulling down and locking all windows and locking all doors... checking them over and over. Many times he thought there were people coming to steal, kill, or other acts of violence. He was a military man and often went in to defensive or even offensive mode. He would hide to ambush the bad guy. It was difficult to convince him that these strange things his mind was telling him were in fact untrue. Many times I just resorted to validating his fears and assuring him that I would make sure whatever was taken care of.
As for patience, no one is a super woman that can absorb all that a dementia patient can throw at them. We are after all... human! We all lose our temper from time to time when confronted with such bizarre behavior that we don't understand. I can tell you that the more you understand and learn about this disease, the more patient you will become. You will finally comprehend what he is going through and that he is truly doing the best he can. Your expectations will shift from what you expected of him in the past to what he can and will do. You will do what I did... be kind to him, reassuring and validating, and then go outside and scream at a tree! Or come here and vent It's a difficult job to be a care giver and why I told you earlier to stay where you have your support system and use any opportunity for respite. You have to get out of the situation on a regular basis to recharge yourself. Know that the situations is fluid, changing often, and you just have to roll with what is. Try to enjoy the moment
Deb, I really appreciate your advice! Almost all of the dementia literature is about Alzheimer's, and many people don't even know there is any other kind. It is horrible for you to have gone through both, but that makes you an invaluable source of information. Since my husband is somewhat better than when he was at his worse, he thinks he is going to be cured, and even his family doesn't think he will get worse unless he has further TIAs. He thinks the hypertension meds will prevent TIAs, but I'm not expecting that. He has taken to sleeping in the recliner because he fell out of bed twice. Many mornings when he first wakes up he thinks he sees the dog or cats we had years ago, but when I say we don't have any pets, he says he was dreaming about them and just had not fully woken up. He always talked in his sleep, so I don't mind him sleeping in the recliner except that he doesn't keep it reclined! When he gets up to use the bathroom it goes down, and his ankles are swollen. His internist says it is like a long airplane flight, you veins can't get the blood back up when you don't move around. Doesn't seem to bother him, though. Life is weird.
....so I don't mind him sleeping in the recliner except that he doesn't keep it reclined! When he gets up to use the bathroom it goes down, and his ankles are swollen. His internist says it is like a long airplane flight, you veins can't get the blood back up when you don't move around. Doesn't seem to bother him, though. Life is weird.
Arleeda, do try to make it so his legs can be elevated. He can't be doing this every night! Just like long airplane flights, he is running the risk of deep vein thrombosis and possibly traveling embolisms. Not a good thing, especially for someone with vascular issues to begin with.
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Luau, thank you so much for reminding me of the consequences of deep vein thrombosis. I don't know if his internist told him this or not, all my husband conveyed to me was that the MD said his ankles were swollen because his feet weren't elevated during sleep, like on a long airplane flight. I should have remember WHY we always try to get up and walk around during a long flight! It's not just to make our ankles more attractive. My husband actually did understand about lack of circulation causing clots and we are now looking for a rail to put on his side of the bed so he won't worry about falling out.
Arleeda... I long ago accepted the reality of two. They actually over lapped. Dad was diagnosed in 1998. Mom was officially diagnosed in 2006 though she was showing symptoms long before that. Probably back as early as 2003 or 2004. Dad did not die until 2010. I consider those my manic years. At least the last three were relatively easy comparatively. Mom died last New Years Eve.
As for the delusions/hallucinations. I know that Dad's dreams were vivid to the point that they seemed real to him. What he dreamed was part of his reality. He would dream about his brother, get up, and ask if his brother had already left. So those early morning delusions are probably related to dreams. He also confused TV with reality. Anything that he saw on the big box was real. If there was a tornado warning in the mid west, he would put up all the yard furniture at home. If there was a robber on TV, he would lock up the house. Evening was also a problem. Sundowning is real. He would think he was at a different house when the shadows came. He would see things that were not there which might only be shadows or moving curtains. Be sure to leave on plenty of light from before sundown until bedtime. Car lights from outside the house also caused a problem so close the curtains. Remember that he doesn't see exactly what you see. Then again he might know what he is talking about if we can find their focus. Dad talked to us for two days about the sheep on the hill. HUH!? We thought he was delusional and commented on how cute it was. He said he thought it was sick. This went on for 2 full days. Finally he walked over and picked up the little sheep that was in the nativity in the window. DUH on us!
Luau is right about the feet. Please do not put a full rail up. Get a childs rail and put it only at the head of the bed. If he attempts to crawl over the rails there is a huge fall risk. They also make a Halo rail. It is just a round rail that goes about where his head it. It's enough of a reminder to stay in the bed. Also you might want to lower the bed and put a fall matt (just a foam mattress) on the floor beside the bed. Then if he falls he will not get hurt. I took Mom and Dad's mattress off the bed and stored the bed. Then I bought a short metal bed frame to use instead which lowered the bed considerably. That way if Dad fell, or Mom, it was only a short fall to the floor. They also have Hi/Low hospital beds that go all the way to the floor for safety. It would be better than the recliner
Problem is we don't have much room in our one bedroom--there aren't any larger units available and I wouldn't want to move if there were. The last move was very stressful for us both! But the reason we settled on the recliner was that the last time he fell out of bed he got stuck between the bed and dresser. He managed to wiggle out after a few minutes, and of course I could easily have gotten help if he hadn't done it on his own in short order. There is no place to move the dresser but out, and it is full of clothes--only have one medium sized closet for two. As it is I have just put our winter clothes in the storage unit and brought out the summer stuff. I think a half bed rail will work--he definitely took the warning about blood clots breaking off and going to his heart or brain seriously.
Delusions seem more prevalent when he first wakes up. Often he thinks the windows have been opened and wants to call someone to close them. I explain that they can only be opened from the inside, and that I never open them because he is so concerned about robbers. One thing he has a good memory for is the daily Memphis crime statistics, which are high but don't occur anywhere near our neighborhood! Our retirement community is gated and has security guards at night. Still, he is worried about being robbed.
The recliner is ok if he puts the foot rest up. The smaller rail might work and at least keep him from falling between the bed and the dresser. Just beware of the full rails so he can get out without crawling over them.
I so remember the safety paranoia of Dad's. He was just more prevalent at night. It truly annoyed Mom that he kept the windows down ALL the time. She liked them up when the weather was pretty. It sounds like his is a combination of all. Statistics that he is sure are all outside his window, and perhaps even vivid dreams of robbers. The insecurities and confusion of the dementia. It can be made worse when he can not find things he has put away, and is sure somebody stole them. Ability to change focus may be an issue so they seem obsess about something. It seems to stick and you can't get it to go away. Dad's was the safety issue as well. Everything seemed to lead back to paranoia about safety issues. It doesn't seem to matter if they are secure. In their mind, their reality tells them that they are in danger.