I would be interested in hearing from any of you who have VOLUNTARILY put your LO's inpatient for medication adjustment. My husband attended daycare for over 4 years, last year it just became too stressful for him. Since November he has been home with me, with aides 4 hrs most days. Unfortunately, I feel his quality of life has really suffered because all he wants to do it sit around. He will not engage with me or the aides in activities such as games, looking at art books, etc. I tried setting up a desk for him to simulate his job and he showed no interest. To me, snoozing and looking at TV all day isn't much of a life, there is no one (family/friends) who will take him out on a regular basis other than me. I am wondering (will discuss this with his doctor) whether an inpatient stay to adjust the meds would make it possible for him to attend a daycare program again. However, I feel that having him admitted voluntarily may result in unforeseen problems. It's a shame that his family/friends don't make time for him in their lives, he would still enjoy going out with them, but that's the way it is and they don't respond to requests from me. Comments? (He is late Stage 6, his neuro says many people at that stage still attend daycare successfully.)
Marilyn, I will play devil's advocate and suggest that maybe snoozing and looking at the TV is all that your husband wants to do. I think maybe we project our own wants and needs on our LOs.....if he seems content and not agitated I would just let it be. That, of course, is just my personal take on the matter. I know that my husband didn't need or want to do anything when he got to late Stage 6 and into Stage 7.
Sandi*--I have thought about that. But on the other hand, if he could get more enjoyment out of life (he was always a people person, but I know, he's not the same person now) I would love to see that happen. I should add that he has no physical limitations, enjoys going out with me, but I only have so much energy to devote to taking him out and getting everything else done! Daycare was a sort of substitute for the social stimulation he got in the past from friends. He is not agitated at home (thank you Seroquel); but content, well who knows? If only one friend or his daughter would take him out once a week, I would be satisfied. But that's not going to happen.
Marilyn, I have to agree with Sandi*. Claude was also a people person, but toward the end, all he wanted to do was sit and snooze. He even lost interest in watching his favorite westerns and going to his favorite restaurant (McDonalds). He didn't remember the name but it had a "big yellow arch" (he still remembered the name "arch").
We want to do whatever we think is best for them, but maybe doing nothing is the best.
Right now my wife is sitting in her chair snoozing. I cannot get her to do anything, even watch TV. She goes to day care three days a week, but spends most of her time in a chair snoozing. She is late stage 6. So far I can still get her up to go to dinner and she feeds herself, but that's about it. I agree with Sandi and redbud. Maybe the best thing to do is nothing. The way I look at it right now is that at least she isn't bed-bound, but that will come.
I tend to agree with the others about their quality of life isnt on our own levels anymore. its what the disease does to them. they want US they want their comfort zone, and they are happy to be in a quiet non intimidating surrounding for the most part. my DH liked to go out too but with me. i had a nephew that tried to take him out once and they had to drive around til it was time to come home as he was extremely upset i wasnt in the car with them. expecting them to be active and participate in normal acitivies may only add to our own stress not theirs. we do tend to project our own likes for them without remembering that the disease has its own set of rules. while they may appear active with us they can shutdown around non familiars and become hostile. its a volatile time and when we find what eases the tension i feel its time to not rock the boat. there is one suggestion maybe instead of daycare if hes uncomfortable with that atmosphere, a trusted and familiar home aide he likes would be a better choice to take him out for icecream or a ride to give you a chance to get some respite. i know my agency has no problems with driving them to appts or just out for a ride in the car. if my DH was still able to enjoy his times out i would use this approach. divvi
The agency I use won't allow the aides to take patients out. One patient had a meltdown, and that was it! Otherwise, I am very pleased with the aides they provide, so I won't try to change. I guess I could make more of an effort to invite friends over to visit, perhaps for happy hour or dessert, and that would give him a lift. I did that a few times last summer, and it was pleasant. I guess I just get tired of making all the plans on my end.
My husband is also at the sit and snooze all day stage. The problem is that by sitting all day he is physically deteriorating. Or is it the other way around--does he sit and snooze because he is physically deteriorating? Would exercise of some sort be helpful at all or is this just the natural course of the disease? Walking with his tiny baby-steps makes it difficult to do more than what is necessary.
marilynmd, Oh I so agree with Sandi, you are wanting the best for your husband and what is best at stage 6 is not really what we would think of as being a better quality of life. By the time most patients reach stage 6 they no longer are able to participate in activities. Your husband is doing what the disease allows him to do at this time. We had a friend who placed her husband in daycare at stage 6 and all he did was sit in a chair, or walk around, nothing more than what he did at home. On the other hand if what you need is more time for things that you need to attend to he would not be any worse off maybe at day care but it would not be a help to him either.
I have a friend right now who is in patient for medication adjustment and believe me the picture is not a pretty one.
My dh has drawn away from social inter-action of any kind. I believe it is because he can't follow the converation and he is getting where he cannot participate in a conversation either because his thought patterns and speech is failing. I think he knows this and just prefers to sit and watch tv, do his word search and play a couple of games on the computer that he can still do. Frankly, I would like to sit and watch tv all day long too...that would not be a problem for me so it is no problem for me that he wants to do it.
marilynmd, I so agree with the others. I sympathize with your desire to increase his quality of life, believe me I tried everything. My husband was in the hospital twice for medication adjustment and both times were horrible and he came out worse than he went in. He too, was a people person who slowly but surely withdrew from everyone but me. Even the children and grandchildren. It got to the place that just having other people around really agitated him. I think it was because he was unable to interact with them either verbally or physically. I finally gave up and family visited just 1 or 2 at a time and didn't stay long. Didn't do much for me but kept him quiet.
ehanilton*, I remember your posts about your experiences with this and that is one reason I am proceeding with caution. This would not be a hospital stay, but rather a subacute unit of a nursing home. However, everyone's comments have helped me see that what I may be wishing for my husband probably isn't realistic at this stage of the disease.
Another thing, the inpatient stay itself would be stressful for him, with no guarantee of an improvement. So I'm thinking to let things stay the way they are. Thanks goodness we have this forum to help us brainstorm!
Marilyn, I agree with the others. My DH has recently started to do more sleeping on the couch in front of the TV and seems content with it. He used to want to go out every day but hasn't asked to go in a few weeks now. It may be the weather and snow or just a change (deterioration). I am probably going to bring him and the aide to the local mall so they can resume the daily walking they did all Spring, Summer and Fall. I would be careful of an in-patient med adjustment even in a sub-acute unit. The dynamics in a facility - the routines, other patients, "strangers" are all upsetting to our LO's and can create behaviors they do not display at home which then may have the dr's over treating them with meds to calm the behaviors. My DH was in an acute unit, displayed aggression, constant pacing, not sleeping. When he came home, none of those behaviors was evident.