My dh isn't in a later stage and is stilll pretty much with it, although it could really be a disaster for him to still be driving (he's not). The problem is: now he feels "stuck" because if I'm not home he really can't go anywhere without a car. It doesn't matter that he almost never went anywhere without me anyway, he now feels stuck and worthless. I can still leave him at home without any problem, but I feel so bad for him. QUESTION: All of you who have already passed this mark, what is there for our loved ones to do to keep them entertained? It's like having a small child around that I have to figure out how to entertain. And, not being able to go anywhere on his own, well... I need to help him find something to spend his time.
My husband is also home alone and gave up driving awhile ago. We are fortunate to live less than a half mile from shopping centers so he is able to walk to the grocery and to get his hair cut. There is a new senior/community center in the same location that will be opening at the beggining of next year.
My husband will usually ask me what I need him to do around the house, such as yard & house work. Could you make your husband a list of things you need done on a daily basis to keep him occupied? Is there a senior center nearby that he could attend with someone else who is retired? Can a friend take him out to lunch once a week?
My husband has always been a bit of a loner. Last year when I suggested that he have more social interaction he replied " I have plenty of conversation with me, myself and I".
My husband is in the same boat. He stopped driving at least a year ago and we moved which really makes it impossible for him to drive. He is bored and depressed too. He can't do anything that requires "directions" because he cannot follow or understand directions. Also, I don't leave him alone because he forgets where I am and gets very upset wondering where I have gone. I am trying to encourage him to go to a senior citizen's facility to shoot pool, but since he is only 63 he thinks that is for "old people". My depression is getting worse too because I can only see this life style getting worse where the only life I have is centered totally around him and I get no relief from it. Hospice has stepped in even though he is not at the end of life but has two conditions that do not have a cure and each is expected to get worse - COPD and ALZHEIMERS. The social worker is coming today and maybe he will have some information on what is available in this area for my dh. Hospice is also sending an LVN twice a week and an RN once a week and a doctor once a month. I really don't think they will renew this care in 90 days when they do their review...but what do I know??? I didn't understand why the doctor ordered Hospice in the first place.
I give DH a note telling him where I am going and the name of the person sitting with him. I always write that I'll be home soon and that I love him and sign my name. I am told that he refers to the note often and it seems to calm him when I am gone for awhile. When they can't remember they may think they have been abandoned. Use a black marking pen and large printed letters for easy reading.
What to do when they are relatively young (50's and 60's), somewhat "with it", and not advanced enough for Day Care is a HUGE problem. Community senior centers are geared for those in their 70's and 80's.
My group of friends and I solved the problem on our own, but I do realize this won't work for everyone. Our guys enjoy each other's company and are comfortable with each other. They don't play cards, but got involved in playing dominoes. So we arranged a "dominoes day". Every Monday, we take turns in being the host house, and 5 of them spend from 1-4 in the afternoon playing dominoes (and eating junk). We also arranged a monthly trip for them - a van driven and chaperoned by two men who own a home for developmentally disabled adults. They have been to museums, aquariums, botanical gardens, and fishing. They love it and look forward to it.
It's the same story everywhere - if nothing is available, you have to be creative and assertive and start what you need on your own.
DH is not "relatively" young - he's 87, but very much with it. Has no medical problems other than a little wobbly when walking. He would be SO out of place at a day care! He functions very well (except the repeating questions every 30 seconds), but it is a problem trying to keep him busy. He does play games on his laptop every afternoon. I try to take him "somewhere" every morning. But he will tell me he wants to "do something" but doesn't know what. It's a problem, but not one that is nearly so severe as many of you.
I ran into this problem also. I solved it by having a companion stay with him. At first it was 3 half days a week and as he progressed, I increased the time that she was here. They did all kinds of things around the house together. At first, he still knew how to do things but did not have the motivation. She provided that and it was amazing how much they accomplished. I had a clean house, raked yard, trimmed bushes and all kinds of little things done by the two of them. He was too physically active and capable to be put in day care so that was never an option for him.
My husband had to stop driving as well, which wasn't easy for any of us. Still, I don't have the problem of him not occupying his time, because he doesn't care if he hasn't anything to do! He likes it. But, yesterday he raked leaves and swept out the garage. He likes being outside doing things like that. I don't know how we'll manage in the winter. I pretty much can't go anywhere without him, but he gets very angry if I arrange a "babysitter" for him. He'd rather be alone, even if it's one of his kids who stays with him. He doesn't need a babysitter, according to him.
Yes, this is the part of the disease that bothers me most, not having the freedom to do what I want when I want. My life revolves around him. He does okay with me going away for a few hours or a day, but I won't be able to get away for a couple of days anymore. The battle afterwards isn't worth it. He says it's my job to be with him after so many years of marriage! I don't know how we'll manage with the battles of will when I finally do get someone in to stay with him, such as a "companion."
Joan, you are very fortunate that you have a group of friends in the same predicament. We had none, and this resulted in my having to place my husband in daycare while he was still in the early stage. It was far from a perfect solution, but overall, it worked. He was about 61 at the time, too young for a senior center; most of his friends were still working. The ideal situation would have been an early stage memory loss social club--they exist in some locations, but not yet in our area. Several people also suggested I hire a male college student to play golf with him, take him places, etc. I decided that in his case, the daycare would be easier to convince him to cooperate with. He has been in daycare for 4 years now; has been "suspended" twice for agitation, but we have so far been able to work things out. I hope to keep him there several days a week for a long time, because I think he needs the variety of activities and needs to get out of the house a couple of days a week.
TERRJA: Would you care to tell me how you found this person. My problem is that I don't have any idea who I call or contact to maybe try and find a person that would come to the house and be with my husband. I am willing to pay and that is no problem...I just don't know how to find a reliable person.
In response to the issue of senior centers and day cares not catering to those in the early stages, our community has opened an "activity center" for those in earlier stages who are not severe enough for day care. We wives are going to put our heads together and see if we can get our guys to try it out together once or twice a month. I doubt any of them would go individually, but they might be more willing to go together. Since we will have to pay for it, it's not something I could afford more than once a month, but it sounds like a good idea.
udithKB: Call or e-mail your state Department of Aging. When I did that I received quite a few calls telling me about their caregiving options. I settled on one near my home and have notified them that when we're ready I will call them and make arrangements. The way I will do this is to have someone from there come to our house to do some light housework, then when we need more help they will be available to do that. Since my husband has been on the Seroquel things have been much better here and, so far, we can manage on our own. I don't know, however, how we will be doing come the cold weather. He's quite happy and contented now.
Judith - I went through an agency. In our area the cost was $18 an hour. There are several threads that talk about this subject. The person we had did very well with him when he was more with it. I noticed that as he got further along in the disease that she did not do as well. If he hadn't gotten so aggressive, at some point I would have had to replace her. You may be able to find someone willing to help out at a less expensive cost through the church or even by word of mouth.
One of the problems I have run into with him having the disease is that there are 23 years between us and I still work. Most activities take place during the day and before I placed him, they did not work with our schedule. With the companion, he could do more.
Dh is stage 6 and it gets harder and harder to keep him occupied. Household chores are usually too difficult (he can no longer work the vacuum, gets confused about how to set up the clothesline.) There are a couple he can still do: take out the compost, shuck corn, peel potatoes. I can't ask him to go get anything or take anything anywhere. He gets it wrong and that's frustrating for him. I try to involve him in meal preparation and try not to be impatient. We're not in any hurry, after all.
Till recently he could bicycle We have been doing some short trips again (to the grocery store or a local tea room) but the long ones that we always did are too tiring for him now. It's a struggle to get him to go where I want, but eventually he does. Like Vickie's husband he likes to go out but has no idea where to go. Last couple times I tried to get him on the metro to go downtown he seemed confused what it was all about and last time refused to get out of the car to go into the metro station. No matter where I take hm in the car he is reluctant to get out when we get there. I think he is afraid because he doesn't understand what's happening. He is often content to sit in the car while I run into a store to do an errand. I worry that he doesn't get much exercise. We have taken a couple walks, and that works OK.
What can he do on his own? Watch TV (for a little while) or recorded programs, look at a magazine (sometimes he will, sometimes he won't) or the newspaper. Look at pictures (sometimes). Stare at my computer screen. Try to put puzzle pieces together (all wrong, but that's OK). Play with stuff on his desk. I put out stuff for him to find. But lots of times he just isn't interested. He likes to sit in the bathtub for quite a while.