To my surprise my DW started talking to me this morning about wanting to do something (she is early stage six and is not capable of doing much) and asked if there was somewhere she could go. Right now, she is trying to tell me that “I’ve always had a good mind, why can’t I do things?” I would have looked into day care a lot sooner, but I thought she would protest and not want to go. Have I waited too long, would this still be a good thing to do? She just said “If I can’t do anything, they should just put me down.” Now I’m starting to cry!
jerry, its never too late esp if she is asking to go. she may find it stimulating and enjoy the interaction with others. give it a try. she may love it and you will have free 'me' time! and dont be discouraged if she changes her tune about going at first. they all find reasons not to go but usually blend in soon enough. divvi
Jerry, I would give it a try. My husband just started day care on Wed and Thurs for 6 hours each day and seems to like it. They tell me he is a "delight" and does participate. The time away from him does make me a bit more patient with him. I know he is safe and being looked out for and will do things for them he won't do for me. You need to find one that can handle your wife's needs and that you feel comfortable with.
I also think unless she is bedridden, Daycare is good for her well-being & yours. I started my husband in Daycare 2 days a week. Since his hospital stay he goes everyday. I am hoping by having him there during the day & being with me at night will keep him at home longer. It is expensive, however, not as much as full-time care. When we pull up, he sometimes makes a comment, but always goes in with no problem. I also feel I have more patience, having a break from him.
Jerry--get on the phone tomorrow and make some arrangements to visit some adult day programs in your area. My husband has been attending for 3 1/2 years and is now early stage 6. It is the single best thing I've done for us since diagnosis, and probably has helped slow the decline of the disease. You should check the Bigtree Murphy site for good information on choosing a daycare.
Should I check out (visit) day care facilities alone or with my DW? She told me (I interpreted what she was trying to say) that she would like to attend this type of program.
I'd say: take her along. She can sense the atmosphere and feel whether people seem friendly. You can see how the caregivers approach her. Just my advice. When my husband and I visited, the caregiver asked whether he would like to come there sometimes and he said "Oh no." But they are used to this response and know how to include a reluctant guest.
I also suggest you take her with you. The Director, had me leave him for a couple hours just to see how he re-acted. I had called a couple places, before taking him.
If there were adult day care in our area, I'd sure take my hb. I think he'd like it, too, because we live in the country and especially now in the winter he doesn't get out.
I have been thinking about this for my DH too. He has friends though I wonder where they are these days. It has become the routine that he reads the paper, then watches tv until bed and doesn't do anything else..no interest even in little chores that I think he could do. I wonder about his attention span too. Since he won't go to church with me anymore we do the church on EWTN but I find if I have to leave the room for a second, he changes the station..He will watch the movies all the way through but I don't think he recalls having seen them. I have mentioned that I think he needs more stimulation and social contacts than just me and the cat. But I also know he is stubborn and not inclined to want to go..Any suggestions for getting him into some activity where he could feel productive would be great.
I took my husband with me when we looked at day cares. I chose the one he goes to because he seemed comfortable with the director and there were other men there his age, some even younger. They had activities I thought he would like such as a pool table. I can't get him to do more than watch tv or go for a walk at home, so this keeps him a bit more mentally active and he is tired when I pick him up at the end of the day.
The day care asked very detailed questions about his likes and dislikes and how he reacted to different situations. They also wrote down every name (nickname) and relationship of people he comes in contact on a continuous basis so they would know what he was talking about if they came up.
I never thought he would go to day care but he has surprised me. I thought he was to self sufficient to need it (a bit of my own denial here) but the doctors convinced me otherwise. I was told to try it and if it didn't work out to just wait and try again later. I'm glad I took their advice.
Jerry--When I first looked at centers, the main things I was concerned with were cleanliness, the quality of the activities, and a convenient location. There's a lot more than than to consider. Based on my experience, here are some things to look at:
--What are the qualifications of the people who run it? Does the director/activities person have a background in that business or a related field, i.e. social work? --What has the staff turnover been? --How is the direct care staff trained? --Is there always adequate staff on the job? (At one center my husband attended, the supervisory staff regularly went out "marketing" and left inadequate staff in the center with the clients). --What security features are there so the clients don't "elope"? (Get out of the center--my husband got out of the first two centers he attended.) The one he currently attends has layers of security--no one is getting out of there!) --Do all the clients have dementia, or is it a mixed population? (I have found all dementia is best). --If they provide transportation, what is the turnover of the drivers? (Frequent turnover caused problems--some drivers would let Steve sit in the passenger seat up front, some would not--it wasn't good). --Are the clients divided up, based on their abilities, for the activities? --Is the physical layout large enough for there to be quiet areas when someone needs a time out? Here are some biggies:
--What will they do if problem behaviors occur? How will they communicate them to you? --Are there regularly scheduled conferences with you to discuss the care plan and how your spouse is doing? --Will they communicate changes that aren't considered problems--i.e., if your spouse starts doing something differently, if they suspect a medical problem such as a UTI, etc. You want a center that has a caring attitude, not one that functions more or less as a babysitting type service.
so true marilyn, on all counts. My Dh has been going for a month now, he thinks he's a volunteer there, and now he thinks he should get paid. We just had a long talk about that. right now he goes 2 days a week, I drive him down, the van brings him home. I usually get him there at 10:30, he gets home at about 3:45. It's a relief to have him out of the house. I've had lunch out with a few friends, I hadn't done that in a long time. But in addition, he seems more alert, just by virtue that he thinks he should be getting paid shows he knows he's going there. today, he got up early, because he thought he should be there. It's a holiday, and they were closed, but he was thinking about it. The first few times, he didn't understand why he didn't stay (?) I didn't get that at all, but I think it's good for him. yes, it is expensive, $92 per day here, but it's worth it, and we are not traveling anymore, so, that's where that money will go.
Well, we checked out two day care facilities today and they seemed okay, but I was not impressed. My DW seemed interested, but by the time we arrived at the second place, asked what we were doing. I think that she will agree to trying out day care after we (I) find the right one. So back to Google. Also we purchased very good Long Term Care policies in 1999, so I'll contact the Insurance Co. tomorrow to verify my wife's coverage.
Jerry, as part of a project I visited an adult day care center today. I met with the director, social worker, occupational therapist. I was given a tour and I was very impressed. All of the clients seemed busily engaged in various activities in different rooms. It seemed like a great initial alternative to placement in an ALF. This one stays open 6 days a week to accomodate working family members to enable them to have a day to run errands, etc. There was only one woman who was in "the living room" who becomes overly excited if she has to interact with others. The only restrictions they have is that a person needs to be bowel continent, and can not be disruptive.
chris r, they told me many people think they are working there or are volunteers. When asked where their pay checks are, they tell them it goes into direct deposit, which is reinforced at home. However, one family actually had "pay checks" sent to the person as proof. They are on to the "fiblet" program. Said some people are told it is a church related function, etc., whatever works.
I think day care is great based on what I saw. Jerry, I don't think it's too late. They told me so many people say they wish they had tried this earlier.
You could also try telling him if he gets paid it would jeopardize his SS. Maybe he will buy that or the direct deposit.
Yesterday I took my sister for her checkup with the surgeon - she is healing fine, just real tired. While standing in the check-in line I mentioned I needed to make an appointment with the social worker at the VA to see what programs Art will be eligible as he progresses through this disease including day care. She told me the VA has 2 weeks respite per year. I said I know, but he will need day care before that. Her hesitation kind of made me think she is realizing this disease is different than having a stroke like her husband did. Call it a 'ah ha' moment. Our mom stayed home until my sister could no longer take care of her. Her attitude has been it is no different than having a stroke or cancer. And as we all know when our spouse is the victim it is different than when it is a parent.
My husband goes to day care two days a week and the VA pays for most of it. I have $15 a day copays right now but I did fill out the financial paperwork to try to get the copays waived. I don't know if each state is different but I was told I could do up to 5 days a week and they do have a transportation benefit--you just have to go to a day care that the VA has a contract with. The one I chose doesn't have transportation so I take him and pick him up but he seems to not mind going and I have noticed he is tired when he comes home on the days he goes. He doesn't pace as much in the evening.
My husband won't go to day care, but I'm going to comment from what I learned trying to get him to go.
Take her with you, but only do one day care on a particular day. Frankly, you probably don't need to actually visit more than one or two. Everything else you can find out over the phone or through their brochures. The reason you need to take her with you is so they can try her out with the group and access her current socialization stage.
We tried out two places. I liked both of them, but the first one could not keep a dementia patient who wanted to leave on his own in. The second one had a pacer who never sat down and there was no problem keeping him in. They divided their patients into two groups. The less severe group had two levels of security. The more severe group had three or more levels (I saw three) and there was no way even someone in the less severe group was going anywhere without staff knowing it was happening.
The more severe group could handle patients who needed to sleep much of the time. When I visited that area I saw two sleepers along with the pacer. They had worked out a separate room for the sleepers and the pacer had a circuit and could walk round and round it and never bother anyone while still being seen by working staff. If he had stopped walking, they would have known that too.
As for the list of questions up thread, basically I'd want to know how long the people running the day care have been doing this kind of work. I doubt if the RN who was running the better of the two day cares that I tried had much academic training for the work, but she had been running that particular day care attached to a nursing home and assisted living home for more than 20 years. In my opinion experience is worth more than academic training that probably didn't exist 20 years ago. They also pointed out multiple hands on aides who had been with them for more than 10 or 15 years.
If she is willing to go to day care, you should try her out in one of them.
Starling--good point about how long the management and staff has been doing that type of work. At the first daycare my husband attended, the owner (who is in the construction business) bought it for his daughter, who had previously managed a retail store. They had neither experience nor training for that type of business.
I tried to enroll dh in the Saturday program at his day care, where they cook a meal together. I thought he would enjoy that. But they refused him because there is no one else in the building on Saturday and so they don't have enough surveillance (he has left his day care area a couple times, but was always found somewhere else in the building). I can try again after a while if he seems more settled in and they no longer have a problem with him wandering off.
The problem they have with him right now is that he refuses to hang up his leather jacket, but wants to keep it on all day. He does the same thing at home sometimes but I have established the rule that he can't eat with it on, so eventually it gets hung up. He does like to eat.
Jeanette--I am wondering why wearing his jacket is a problem for the daycare? Yes, it's strange, but after all, people with dementia don't always play by the rules. Based on the practice of "going where they are" why don't they let him keep the jacket on? Do you think that perhaps he's cold or afraid that he won't get it back again, even at home? My husband wears lots more layers of clothing now than he ever did, he is much more sensitive to cold--part of the disease.
Marilynn, they do let him keep it on, I guess, and usually he will take it off at lunch time. I think it's like a security blanket for him. He feels safe, warm and comfortable. He always keeps it on in movies, restaurants, etc, unless it is very warm. I understand them however because I don't like it when he wears the jacket at home either. He zips it right up to his chin. I don't know why it bothers me so much. I should be able to let it go, as I have completely accepted his wearing his dress shirt to bed. I'm looking forward to warmer weather!
Usually, around the house my husband wears an undershirt, sweatshirt and sweatpants. Since it has been so cold this year, I bought a zip-front sweatshirt that he occasionally will agree layer over the regular one (to wear inside the house). Do you think your husband would like one of those? Maybe it would subsititute for the leather jacket indoors?
At my husband's day care I've seen some of the others wear their coat all day. The staff just ignores it.
My husband doesn't mind going to day care but he doesn't always participate in the activities. On Friday the staff told me that he refused to do anything but help blow up some balloons. He laid on the couch and watched the aviary they have. Everytime they asked to do something he just told them "nope". Also some days he won't eat lunch and he usually is a very good eater. The staff doesn't seem particularly upset by this but it bothers me alot. His short term memory is so bad that he can't tell me anything he does during the day. I only have the staff's observations to go by.
Yes, dh has no idea what he's done all day. If he volunteers any information, it's that he didn't do anything and didn't get anything to eat or drink. I know for a fact that he almost always participates in the activities and ALWAYS eats his hot lunch. For some reason he won't admit to me that he had a good time or enjoyed anything there, even on days when I have heard from staff that he has done very well. If he says anything it's negative and I don't want to reinforce that attitude so I just don't ask any more. This week he's supposed to go three days for the first time, so I'm curious whether it will work.
Marilynn, thanks, he has warm sweaters and sweat shirts and always wears a sleeveless sweater-vest over his shirt. Maybe if I got him to put on a sweater right away in the morning (before he thinks of the jacket) that would make him warm enough. But he also puts on the jacket when he wants to GO (somewhere, anywhere, home). I suppose that's why it bugs me, it's a sign of his restlessness.
I don't post much but visit often. I have a question for you, deb112958, about the VA day care. Was there financial criteria in order for your DH to qualify? We are (as you can see by my id.) in Texas. My husband (in early stage) started day care twice a week in November 2009 and this week he started full time (his request). The center has a contract with the VA that I am pursuing. I work full time and if there is financial criteria, I'm worried he may not qualify. If he doesn't then I'll have to look at our budget because as all of you know, it's not cheap. On the other hand, I have peace of mind at work as I am not constantly interrupted by numerous phone calls from DH when he was home during the day.
We have an appt with a VA doctor on March 9 to pursue the daycare contract and I will try to get him on the agent orange registry as well. (I'm keeping my fingers crossed!)
I'm in Illinois and there was no financial criteria for him to qualify for the day care. Depending on what you're husband is rated with regard to the VA healthcare (this is where the financials come in), you may have to pay a copay for each day he attends. Right now, I believe it is $15 a day or $75 a week. My husband just started day care this month and goes 2 days a week (all we can afford right now). I was told that he could be approved for up to 5 days a week if I wanted to, plus there is a transportation benefit (which we don't use) He would also be eligible for respite care at the VA Hospital when the time comes.
To get the approval he had to be seen by a VA doctor who wrote the order for day care, and then we saw an RN where we were asked some questions regarding his need for day care (I answered most of the questions). We then had an appointment with a VA social worker who actually handled the paperwork. It took about 2 weeks for the paperwork to be approved.
I was told by his day care that they would never send me a bill for services, everything would come through the VA. The VA bills once a month, so I will have to see if I have to pay copays (I filled out a form to waive copays due to our drop in income once he went onto SSDI). If I can answer any other questions, my email is in my profile.
Jerry: Go fo it. I waited longer than I should have and didn't get to use it very long. But, it was wonderful while it lasted. My DW got to where she was needing more attention than they could give just one person and they would have had to neglect some of the other patients. I could understand their situation and I had to take her out.
I didn't think my dh was ready for day care but he seems to be adjusting (knock on wood) and man, it was really easy for me to adjust! The mornings when he is going are still very tense for me, waiting for that crucial moment at 9:30 when the van arrives, so ironically, the non-day care days sometimes seem relaxed in comparison! But this weekend, due to a change in scheduling, he was home without day care for four days running and it seemed an eternity. On the days when he is home I now find I have more patience and commitment to keep him occupied, because I know a respite day is coming again soon. I still don't know what my copay will be but whatever it is, it is worth it.
Jeanette--I am much more relaxed now that I'm doing the transportation to daycare. I don't have to wake my husband up, work against the clock getting him ready, hear his complaining about going in the van. I am taking him later on today, and I don't even tell him where we are going--I just say "out and about". Yes, it involves more driving for me, but less stress all around.
I've been driving my DH to day care myself, then he takes the bus home. He remembers absolutely nothing, but he's pretty sure he had a good time. Yesterday he told me he found a friend, another man, with whom he got along well. so that made an impact. I went to the support group Monday evening, and discovered that others are thinking they are being paid for their services at the Sr Citizen Center (which is what I call it). One man gives his wife an envelope with 3 twenties in it, every Friday, saying the bus driver delivered it. She commented that it's cash so it must be 'off the books'. We laughed at that. another is sure he gets paid direct deposit. They all seem to think they are volunteers, except one who is a member of 'the club'. I wondered how others got their DH's to go. He had missed last week because he had a bad cold, so I did have a little trouble getting him to go yesterday, but he went finally. Now I'm afraid we'll be cancelled out tomorrow because of the weather, and he won't remember that he goes again. I'm thinking of adding another day, just so there's more for him to remember. that was suggested but it's expensive, and not always convenient. Because I drive him there and it's 1/2 hour there, 1/2 hour back, it really takes a bite out of what little time I get. I get him there about 10:30, I'm home by 11, then he gets dropped off at 3:30. Not a lot of time. but i make the best of it.
Thank you for the detail on the VA and Day Care. Now I can be better prepared as to what to expect. Even if he doesn't get approval for 5 days a week, any reduction in cost will help. You gave such detailed info that I don't have any questions right now. If I do, I'll email you. Thanks again Deb.
My dh is going for three days a week instead of two, starting this week. Today was the first time he went two days in a row and I expected protest this morning, but it was surprisingly easy. (May still get some tonight!) I too am hoping that the extra day will get him more into the routine and help him to accept it as an ordinary thing. When I signed him up I wanted to start with one day a week but was strongly advised against it, since that's too little to constitute a new routine.
I want to thank you for the info about the VA benefit for Adult Day Care. My husband goes daily while I work fulltime. He was approved for 3 days/week w/no co-pay. This was not, however, without getting the runaround at the Houston VA. I started this in Mid March and he was finally aproved last week.
DH received an agent orange exam in March and now the VA says his DD214 will not suffice as proof he was in Vietnam. They say if it can't be proven we'll be responsible for the medical costs relative to the Ogent Orange Exam. (Why didn't anyone mentioned this then.) I explained over and over again that is the only documentation we have and it clearly shows he received a Vietnam service medal. VA responded that everyone in the service during that time received a Vietnam service medal. We need proof of other medals. I have requested records several times and all the VA ever provides is the DD214. The Navy office sends me back to the VA records center.
We also learned that my husband should have been receiving compensation all these years for shrapnel in his chest as a result of an explosion onboard the USS Ranger. I'm working filing this soon.
Texasgirl, you're making progress, albeit slowly. That's good, and I'm glad for you. I hope additional records come through for you. Can your congressman/woman be of help?
I'm glad you where able to get at least the three days with no copays. My husband now goes three days also.
With regard to showing your husband was in Viet Nam, dking* gave the web address of: http://www.archives.gov/st-louis/military-personnel/standard-form-180.html to get my husband's full records. He said to fill out Form SF-180 on that website. The DD-214 is just their seperation paper and doesn't show everything they did. I haven't filled it out yet, but will try to get around to it as my husband was turned down for benefits for PTSD (diagnosed by the VA) because he can't prove he was ever in combat in Viet Nam. I hope this helps you.
definitely contact your congressman if you are getting a run around with the VA - constituent services - that is what they do - they make one phone call and suddenly people can't help you enough
Just not getting back online. It's been a longggg workweek and I'm now enjoying my Friday evening alone. Hubby in bed (thank you God) and I'm on my second glass of wine.
I appreciate everyone's help on this. I've already filled out the Form SF-180. The records center sends me to the Department of the Navy and the Department of the Navy says to go to the Records Center. It never occurred to me to write my congressman. I'll definitely check into that.
Dick went back to day care yesterday, after a lonnnng period of not going because of his broken hip. a week in hosp, a week in rehab, then several weeks of thapy at home, etc, etc,. anyway, he had a wonderful time Friday, and the place made a big fuss over him coming back to 'work'. (he thinks its a job) And he was so happy when I picked him up, and for the rest of the day. Unfortunately he's not happy today, and thinks he should have gone to 'work' but I told him it's saturday. Can't wait til Monday.
Once again I must say, it's never too late for day care. dick goes 3 days a week, and got up early yesterday to go to work. I told him he doesn't go on thursday, but today, he was up and in the bathroom for work. He shaved, let me give him a sponge bath, let me dress him, and was ready to go . When I brought him he told me he hates when I leave, but it's good for him and good for me. ESPECIALLY good for me. If you have difficulty getting them to go , do what I did, tell him it's a job, and he gets paid. Men love to go to work. It makes them feel worthwhile.
My sister-in-law who is probably stage 5 goes to day care at the Easter Seals. Her daughter was telling me how hard it was to take her at first - like first days of taking your child to kindergarten. She would be crying her head off about going but once she went in had fun. Now they pick her up 4 days a week and when you talk to her she says she volunteers there and has lots of fun. When we were back there for their dad's funeral we went to her apartment. She has pictures hanging all over the walls that she painted there - some in watercolors, the earlier ones in paint. But, I think maybe a woman would be easier to get to go than a man - has that panned out here?
My dh has got used to going and tolerates it, but he is NEVER enthusiastic about going. In fact we don't mention it until we are on our way out to get in the van. I don't want to have to deal with a refusal, there would be no way to get him out of the house if he decided he wasn't going. Once he gets there he is cooperative and pleasant (they say), although he often checks to see if the vans have arrived yet to take everybody home. Adventure: he is starting at a new place tomorrow. They are sending an aide along with the driver to pick him up.
At least for now, my husband (stage 6) is enjoying day care, although everyone is older than him. I don't think he knows. He has been going for about a month full time. I have no assistance for paying for it, which is hard. It's also alot more driving around in rush hour, but I can't leave him alone while I am at work.
Once he stops being cooperative though, I will be in trouble. hope that doesn't happen for a while.
My husband is stage 6, and in August he will have attended for 4 years (3 different daycare programs). I've posted extensively about the subject--if anyone new hasn't read my descriptions about him being "dismissed" from the first one and is considering enrolling your spouse, you should search for my earlier comments.
My husband, who is only stage 4, is a definite exception. We went to visit an adult day care facility here. He listened to the explanation about the activities they have and decided he wants to go. I am getting all the paper work completed as fast as I can, before he can change his mind!
Janet - I have thought about it or trying the senior center for both of us just to have something to do. Right now we are planning to head to a Workamper job for the rest of the summer. As long as he can drive I am not sure he would go. Personally - if it were me and they had activities I liked I would go early in the disease. I need to look into it once we settle somewhere for the duration of the disease.
Dh started at a new day care this week and it seems to be working out. What a relief, I was so afraid I'd have to start all over again with getting him used to it (it took a couple months). I transferred him to this place because it is a good place for him to stay for short-term or long-term residence in the future. I hope to have him stay there for a week this fall so I can go and see my Mom. She's 89 and still going full steam ahead but not getting any younger. Also, I like the fact that it is a locked area since DH has become a runner. Not there, apparently; the aide who called me yesterday said he seemed to be smiling and quite content and was participating in the activities. He even took off his jacket when he got there. Wow! She invited me to come in to get acquainted with the group so I'm going to drive him in on Wed and stay a while. Good feeling, so far.