I am posting this for a friend. Her spouse is 90, late middle stage of AD. They have had a very active social life--going to nice restaurants, the theater, movies, symphony, etc. He cannot hold a conversation, but seems to be fine with these activities. However, he is starting to fall, and to have some bathroom issues. She is a tiny (probably under 100 lbs) 80-something, and he is a large man. I feel that it is probably time to curtail the former activities and since they have a hired companion 6 days a week, 10 hours a day, and to only go out as a couple when the companion is present. He also attends adult day care several days a week, and can get socialization there. He has a walker, but doesn't use it. The bottom line is, I think the social activities now are really more for her benefit than his. How do you decide that it is time to reinquish your former social life and tailor activities more to the limitations of the person with AD?
<<I think the social activities now are really more for her benefit than his.>>
Is there really anything wrong with doing things that are mostly for the benefit of the caregiver, as long as these things don't endanger or overly stress the AD sufferer?
It might be time for her to either do things with other women, or, if the other couples in her group are aware of the situation and it doesn't bother them, to just keep on socializing with them either alone, or when the caregiver is present.
It is very, very important for the spouse not to get isolated. The isolation happens anyway to some extent. But to actually choose to be isolated is a mistake.
Here is my concern--what if they are out with friends (all in their age group) and he falls? I don't think any of them can pick him up. In the evenings, at theater, etc. I think they will be less likely to use the walker, and consequently, a greater fall and injury risk. It is more common to see people using walkers during daytime activities.
My DH will use a transport chair to go to our granddaughters basketball games. He sits in it during the game and lets us push him from the car and back. Otherwise, he so far, walks on his own.
I would be worried about the ability of this lady and others in their party to address the husbands physical needs, emergencies that could occur. It would be nice if they had a hired companion/aide to attend these functions with them. The wife needs to maintain her social interactions any way she can. But she should look for someone to either accompany them or to stay at home with him while she goes.
I think the only activities they currently do that would lend themselves to a wheel or transport chair would be going out to dinner. Ditto for having the hired companion attend. The theater, symphony, etc. are really not conducive to the handicapped--they should be, but aren't. Also, I don't know if their friends are physically capable of lifting a wheelchair out of a car, etc. I agree that having a hired companion attend the dinners out would be a good idea--I don't see how the husband would be safe, otherwise.
The transport chair I have is a lightweight model and I have no trouble putting it in or out of the trunk. Wheelchairs are too heavy for me. I agree, there should be a third person.
Maybe it's different where you are, Marilyn, but here, there are special areas of the theaters (symphony or plays) for wheelchairs. One has to make arrangements in advance to make sure they're available, but you have to do that for tickets anyway. Places like the Old Globe have special valet parking just to help people who have physical problems, too.
You are probably right--I've never had to check them out, but they may exist here. So I guess the best solution would be to check for availability of handicapped seating/valet and use the transport chair, and continue to go with friends. The downside of taking a hired companion is that my friend would have to pay for extra hours as well as an extra dinner or show ticket. In this economy, I don't think that's possible. Thanks to all for your posts.
A friend, aged 90, very frail but very bright, went to the Nutcracker in NYC for half price, because she could go in a wheelchair! Her daughter took her, and she enjoyed it mightily.
Years ago I went to the Shakespeare Festival in Ontario Canada and, maybe because of where the wheelchair areas were, I was very aware that they existed. I would think that most theaters have wheelchair access where a transport chair would work very well.
Second, if they are out and about as a group of elderly couples and one of them falls (and it could be any one of them) there are other people around to help out, or there are the paramedics who probably ought to be called if someone falls in any case. A fall in someone's home also can be dealt with by the paramedics.
There are all kinds of reasons for someone to get isolated, but this isn't one of them. I can tell that marilyninMD means well, but as a caregiver who ended up isolated without understanding what was happening until it was too late to do much about it, I've got a real horror about someone CHOOSING to do that. My husband both won't socialize and can't socialize. But to stop socializing ...
We have always had season tickets to the theater, both the Old Globe and Broadway SD (traveling shows). I became very aware of handicapped access because another lady also had season tickets to both, and she always took her mother, who needed a wheelchair and was well into her 90s and had AD (apparently) and an oxygen tank. I helped her with bathroom issues a couple of times. Sadly, I haven't seen them in over a year now...
My husband and I went with my boss's father and mother to college football games every fall for years - he was in a wheelchair and we accompanied him. We all had a wonderful time. He's gone now, but we'll never forget those years with them. Don't give up socializing if there is ANY way around it! We all need people - and it is amazing how many are willing to help us!
I wasn't suggesting that my friend actually give up socializing, but I was wondering whether at some point in the disease, one's social life needs to be adjusted to accommodate the abilities of the disabled person. Since they have a hired companion 6 days a week, she is able to attend social functions, exercise, go to the hairdresser, shop, etc. during the day. She also is active in a women's organization. I guess my basic question is, when does it become unwise to continue going out as a couple, if bathroom issues and mobility are a problem.
I think the time is when the caregiver can no longer handle the situation. My DH has stenosis and is very slow now and occasionally bathroom is an issue, for like pulling up his pants. I monitor where he goes with advance knowledge of the bathroom situation. I have familiarized myself with public bathrooms all over our town that he can get into fairly easy.
The same thing with mobility. He can only do walking short distances therefore I do not take him in a store like WallMart, because he will not use the transfer chair. I could no longer take him on a airplane, airport or cruise because of bathroom issues. That said, I know other people are sometimes more adventurous with their lives and are comfortable with these issues. I would say each person has to make their own decisions about their activities.
Marilyn, I think it depends on the AD patient as well as the caregiver. If the patient likes going out and the caregiver can handle it, the mental stimulation is good. Some patients, however, start to get stressed by outings and prefer to stay home. I imagine if your friend's husband was upset, she wouldn't be interested in taking him along. So fa, my husband wants to go everywhere with me, and that's been fine. (There hasn't been much question about whether I can take him along -- he doesn't have the mobility issues your friend's husband has.)
OK Marilyn, that is a different question. For most couples socializing stops because of the cognitive components of dementia and not because of the physical components. It stopped in my case before diagnosis. As Sunshyne said, "Some patients, however, start to get stressed by outings and prefer to stay home." My husband doesn't mind outings, like going out to lunch which we did today. He minds if we go out to lunch with another couple or go to someone's home for supper.
So basically it is very odd for the question to come up because of physical issues.
Thanks, Starling for clearing this up for me. Since my DH is still very social and has no physical issues (thank heaven), it's hard for me to imagine what will occur later on in this realm. But now I get it--in short, we can make accommodations for the physical stuff--it's the cognitive issues that eventually will be impossible to overcome. So as long as the brain is willing, the body can go along. Got it!
Beware the law of unintended consequences. LO laughs and jokes, speaks in sentences, recognizes old friends. If you are lucky, you catch a moment in time where, for an instant, nothing is wrong. It minimizes what th AD couple is going through. They say things like "She looks fine", "it doesn't seem as bad as I thought", "you are over reacting", "you're lucky to be able to handle it as well as you are; my grandma had Alzheimer's ...". On the way home the conversation goes: Me: it was good to see <name of friends> DW: who? Me: <name of friends>, we just left them. DW: I haven't seen them since <pause>, never mind DW: <later, home for 10 minutes> are we ever going anywhere?
You have expdended a great deal of energy for what seemed like a good idea, but netted out to another stressor and no benefit to LO, other than the forgotten half hour with <name of friends>. Your mileage may vary.
Well, "they" say we should all live in the moment--so looking at it that way, in your scenario LO did get benefit. Alz is living in the moment (or nanosecond) to the max! So I focus on the part where LO laughs and jokes, recognizes friends, etc., not the forgetting. Although you didn't mean to be funny, I did get a chuckle out of your DW's last question!
My DH, who always claimed to be a "People Person," would insist on going places when we were invited that I knew he couldn't.....for physical reasons. Yes, he'd slow us down, or hold us back completely sometimes because he refused to relent. Then it was because of "the knees. Got a bad knee."
As DH progressed, and AD was "Known" my family and I noticed that after a while DH would start asking "When are we going home?" This happens more and more. DH wants to go wherever I go because he doesn't want to be alone, or left behind. The other day he insisted on going to the grocery store with me, but only a few minutes into it he got mad at me for looking over the fruits and vegies, and looking at labels. He wanted to "GO!"
Our socializing ran in to a brick wall I think because DH gets tense and uncomfortable with more than a few people around.
I used to get a lot of "when are we going to go home" during the end of our socializing as a couple. That was before the diagnosis. At this point he doesn't mind going food shopping with me. I haven't done much shopping of any other kind lately because I'd like to go alone and can't manage that.
There has been one, much older couple, that we have gone out to lunch with. He seems to be able to handle them, but not anyone else. And that has been two lunches over a 4 month period. Not exactly an exciting social life. <grin>
I have thought many times it would be nice to have another couple who has an AD spouse to socialize with. i had a jeweler friend who is in early stages and if you saw her and my DH conversing. it wasa riot. they would repeat the same thing over and over the each time were SO surprised each time one would repeat the same thing-and laughing. groundhog day is an understatement!..while that was going on i think it would have been nice for myself to have another rational human to speak to about sane things:) maybe we should set aside a commune where we can all move and have gatherings for our spouses and ourselves...and could alternate respite time and KNOW the persons in charge get it!!! yeah!!.sigh.... divvi
Another couple and us started going out to dinner on Fri. nights about 10 years ago. We became great friends. The wife died 4 years ago (about the time my DH was DX's with AD) and her DH was absolutely lost and I truly missed the dinners out. He is now 89. My DH is now 85 ( I am 69). But since her death we have tried to continue the Fri. nights out. Now the friend has memory problems - nothing DX'd, still drives! Anyway, when I can, I take pick him up and take him with us out for dinner and it's a riot. Neither hears well but they banter back and forth - and what do I do?? I tune out completely. That's my "respite" time!
We go out with the couple I've been describing. He is my DH's former father-in-law, and she is a lovely woman. DH keeps asking him the same question over and over; he keeps giving the same answers; she and I have our own conversation. It's perfect for all.