I know we're getting close to that time when I will have to put my wife in our local adult day-care program for her own safety. We haven't come close to a major safety issue yet, but I can see it on the horizon. I've mentioned the idea of her "volunteering" at the center but she has no interest in doing that. If I took her there against her will/wishes there would be one ugly fight. I sense that most spouses wait until there is that one event that leaves no other choice. Do spouses really do this proactively or, as I think, reactively?
HI Iggy. I have wondered the same thing. My husband isn't ready for assisted living yet but I can see it on the horizon. Both his parents had AD and both needed care. My husband was diagnosed this year, July 2nd, with probably Alzheimer's Disease. He is probably between stage 4 and 5. On the side, I started looking into assisted living so that I could understand the costs. Everything I have read or people have recommended to me is put your LO on a wait list so that there is room when ready. The place I'm looking at has room so I will visit every 6 months. They invited us, both my husband and me, to come in one evening because they had a guest speaker talking about when is it time for assisted living. The predominate theme was safety, theirs and others. I did take my husband with me and we have talked about this. The way I am framing it is IF the time comes AND IF assisted living is needed, I wanted to know what he thought about it and make sure he was OK with it. I don't know if this will work down the line but so far so good. The first thing he said when we walked into the facility was 'this is beautiful and so homey'. I don't know the answer but I'm looking for feedback like you are. The folks at the assisted living facility recommended that my husband attend and that families talk about everything during the process so that you know their wishes when the time comes that they can't communicate with you or you need to start making decisions on their behalf.
I cannot imagine even bringing up the subject at my house. H is withdrawn and does not do goo din social situations. Hearing difficulties, sits in his recliner and dozes most of the day. We have NEVER talked about death or the fact that his disease is fatal. He would not even talk about Preplanning funerals. He has no interests in most things anymore. Even his beloved garden.
I think it is great you are able to talk with H about it and I hope things will work out for you.
Even as I'm noticing more little things that are limiting my DH, the CONVERSATION about assisted living or nursing home living, would only go so far as..some drastic remark about 'if I ever get to that point''.. meaning he prefers death. I don't know how to 'get there' from here either. I've tried the suggestion that he 'volunteer' at the nursing home. He's not interested. There isn't much he can do without supervision as he's impulsive..and won't stay where he's expected to stay. Anyway, I'm eager to read more from those who've accomplished it. My DH is ok about death and has a burial plot so he's satisfied about that. We just can't have a conversation about LIVING though to that point.
I took my husband, diagnosed 3 years ago, to an adult day care on a trial day. I told him they were studying Alz there. He had wanted to be in a study and "be cured", so he agreed to go. I left him there without me for about 2 hours. When I got back he looked like he had been crying. He never wants to go back. So I think it won't work for us. Someone told me it was just too soon, he wasn't ready. I hope some day he is ready. Sometimes I feel trapped at home, he does better at home, but it is lonely for me at home. He isn't the same friend he was to me before AD.
Danise, that's a clever idea for getting your husband to give it a try. I wonder if, the next time you want to try, it might go better if you stay with him the first time (or two). Just to get him accustomed to it, and also to see what he responds well to and what he dislikes. That way, you might be able to help the Center figure out how to keep him happy when you're not there. Also, if there is more than one facility in town, maybe he'd react better to a different one.
If your husband is still at a stage where he can enjoy outings ... some facilities arrange for functional AD patients to go to museums, shows, parks, etc., once or twice a week, rather than have everyone stay at the day care center. Your husband might like that a lot better, and you'd get some time to yourself every now and then. Or perhaps you could find someone who would take him out and about, I've seen caregivers talk about doing that.
I've mentioned the idea to my husband, that if I'm not successful at finding work I can do from home, I'd like him to go to a Center. He said okay, and did not look particularly bothered. But, of course, I haven't actually TRIED getting him to go yet!
I've mentioned this before, but it bears repeating here. Our social worker always emphasizes - There are only two types of people who are in Adult Day Care. Those who "work" there, and those who "volunteer" there. Everyone I know who sends their spouse to Day Care tells them that they are either going to "work" or are needed to "volunteer" there.
The "volunteer" one seems to work quite well. They feel that they are needed and being helpful.
I knew it was time for day care when a neighbor told me the mail lady had found him wandering about a 1/2 mile from home and he had to following her truck back to our house as she couldn't allow him in the truck. Also he began taking things from neighbors yards and putting them away at our house. Thank heavens I have great neighbors and no one got mad. He thinks he is a volunteer and they are very good about thanking him each day for his help and asking him to come back the next day. That normally helps because I can tell him that he promised to be there. Some days are really rough like today when he cried because he didn't want to go to that place! I know I did the right thing and I know this is where he needs to be while I work. All these major decisions we have to make takes its toll.
I guess I was fortunate. I ended up being on the advisory board for our local day care center, before it officially opened. I had to take my wife with me to the meetings since I could not leave her at home and there was no other day care center. Thus she was in on the planning. When it finally opened I made a big issue over the fact that she would get to check it out and see if it met expectations. For the first month she was the only client there, and got along fine with the woman running it. She still goes willingly, even though there are several more clients. It helps that as soon as she arrives they take her for a cup of coffee. She even heads for the coffee without saying goodbye to me. 2 or 3 times a month I join her for lunch at the center (I get my lunch - always very good - for $5).
My husband was very lonesome the three half days that I work. One day he went back to bed. When he woke up he forgot that I was at work and went outside in his undewear looking for me. A friend came and got me (I work nearby) I had thought about day care and that made up my mind. I also told him that they needed help there. (at first, he wanted to know if he was going to get paid. :) Anyway, he really likes it and I'm so glad. I take him on my way to work and pick him up when I get off. They are all so friendly there and have a lot of activities. He also gets a hot lunch.
I enrolled my DH last year in October in a daycare. It didn't work out at all. He kept looking for me all the time and would not settle in. We started it real slow, just a few hours at a time. He kept refusing to go and I didn't make him go. So he never went back. This year on the end of Sep we tried it again. Four hours twice a week. So far so good. I guess he was not ready for it last year. He is much further along with AD than last year. He is more quiet due to the Risperdal. He has not said that he didn't want to go back, so I will see and go with the flow. Those four hours sure are nice. No questions to answer no locking for him in the house. Nice and quiet.
Thanks Carolyn. I should have mentioned that our facility is administered by our local hospital, but is not located at the hospital. They charge $45.00/day. I don't think they allow you to pay what you feel you can afford.
iggy, here it runs $60-75 depending on whether you need to have them pick up your ADLO. Discounts for regular attendance, and bigger discounts for full-time. Sometimes you can get partial support from the Alz Assoc for things like that.
Iggy--I started Steve in daycare 2 1/2 years ago when he was still in the Early Stage of AD. He thinks it is a combo of volunteering and working. I show him the check from his long term care policy, and say that it is his "paycheck". It makes him really happy to see that he's still the breadwinner--so far, so good! So to answer your original question, I'd say the earlier in the disease you can get them to attend, the better. You just have to hit on the right motiviation.
My husband has been going for two years to his daycare and he thinks he is being paid also. He get Breakfast and lunch for $45 dollars a day that is if you go at least 3 days a week, its more if you go less, we are really lucky as the VA pays for him to go 3 days a week, I use to send him more and self pay the rest but now he getting weaker and harder for him to stay all day but since I work he needs to go. It seems like VA would help pay for home care but they do not. I will look into family leave to see how that works. When he first started going his Doctor talked him into it by telling him his brain would work better and I really think it did for a long time even now he seems better when he has been to day care vs staying home with his caregiver..my caregiver is great there is just more going on at day Care.
Iowawife, the Vets will pay Aid & Assistance benefits to those who qualify. This is a "pension benefit" and does not require service-related injuries to qualify. It provides money for Veterans and surviving spouses who require the regular assistance of another person in eating, bathing, dressing, undressing or taking care of the needs of nature. Most Veterans who are in need of assistance qualify for this pension. Aid and Attendance can help pay for care in the home, nursing home or assisted living facility. The last I heard, a Veteran is eligible for up to $1,519 per month, while a surviving spouse is eligible for up to $976 per month. A couple is eligible for up to $1,801 per month.
If you have questions, there is a discussion forum about A&A, at: http://veteranaid.org/forums/index.php?board=2.0
Another caregiver said to go to:
http://www.myhealthyvet.com
and click on your state, and most of your questions will be answered there. There are also links to call the VA hospitals to talk with an advisor. If all above fails look in the yellow pages for The Purple Heart Society in your area and call them.
Several people have recommended asking your local chapter of the American Legion to help you apply.
I applied for my DH for Vet. aid and assistance - all 32 pages I think it was! Then we were turned down. He would have qualified on his own - but because I am still working some, and my IRA $$ - no luck.
Andrea had to go to daycare, as I was in the hospital, and Tina and Andrew both worked. There was no other choice. Yes, she was mad that she was there, and yes, she probably cried a bit, and yes, she asked them 20 times an hour about leaving. But there was no other choice.
By the time Tina was able to take Extended Leave off work to keep Andrea at home, she had gotten used to the place. I won't say she ever came to love it, but she probably would have been able to continue.
If it comes down to a choice between them being a little upset now and again, and your health and sanity, please do not let it get to the point you feel it's a last resort. You're a much better person when you let you take care of you. They'll be fine.
Also, a few people mentioned that "their loved ones would never go for the idea." I felt the same way about another situation we encountered, "She'll never do this, and it won't work, and no way in hell will it go smoothly." I was totally wrong. I know we know them the best, but sometimes we are wrong. They'll do the exact opposite of what we expect, so go ahead and give something new a try. It won't kill anyone, and you just may be surprised!!!
Hi everyone--- DH attends daycare twice a week from 11 to 3. It helps that the director is very kind and very pretty. She said he gets restless the last hour so I haven't extended his time there as I had planned. The fee is more than I make but I'm trying not to lose my job. They charge 40 for 1/2 day (under 5 hours) and 50 for full day. He goes willingly and seems to be okay when I pick him up. He always has his coat on and is sitting by the door. His first day I sobbed all the way to work but I'm okay with it now. We"re actually happy to see each other at 3:00. cs
The Caregiver Cruise made me realize more than ever that I need some time for myself. My husband has regressed quite a bit in the last few months - following me around constantly, asking me every few minutes what I'm doing, always wanting to go out for an activity, etc. Last week I brought him for a trial half day to SarahCare, a franchise of a nationwide co. recommended by my Alz Assoc contact. My husband said it was OK there but wasn't sure he wanted to return. This morning we went again. I told him I was going home and will pick him up at 5pm. So far, so good. I refer to it as the Sr. club. SarahCare requires minimum attendance of two days a week Our charge is $80/day! I finally have some time to post and I'm looking forward to scheduling lunch with some friends and, eventually, even cleaning!
I am so jealous of you fine people who have had the guts to try the daycare route. I am SO ready for my DH to go, but have not had the courage to take him.