I checked the previous day care threads and none of them seemed to cover this particular situation.
OK, so I know he needs to spend some time in day care so I can have a life. And he needs to spend some time in day care so he will stop doing dangerous things like taking 2 hour walks in 85+ degree heat.
The Alzheimer's Association counselor suggested that I have the doctor write a prescription saying that he needs the mental stimulation of a day program. I'd like to hear other ideas that have worked for those of you who's LO is in a day program of some kind.
Since we are older (he is 70, I am 67) I can't use the excuse that I need to go to work. We have been retired since 2004.
At what point did you realize that your LO needed day care?
Also, how expensive are the programs you are using? How are you paying for it?
Check with Senior Services in your area or the local Alzheimer's Association. Our Senior Services pays for DH's daycare completely. You should be able to get at least part of it covered by them. If you qualify for Medicaid, transportation may be covered as well. We don't have Medicaid so we pay for van service, but it's only $2 each way.
I just wish there was day care in my area of Florida. The only thing I've found is family day care places that are homes with several residents that will accept others for day time care. But everyone there is over 80 and sitting around doing nothing; my husband is 64 and needs conversation, some kind of mental stimulation, etc. I'd love to bring him to day care for a little respite. Right now I'm using Comfort Keepers, but they are pricey. The people they have sent have been very good about trying to involve my husband in conversation, etc., but I would love to have a place where he could really try to interact.
I live in Fl and the Alheimers Assoc. has a day care center in my area. My husband goes one day a week and he thinks he is working there. At 66 he is the youngest and most active but it gives him a day away from home as I am employed full time so he is alone all day. It is expensive $55.00 per day. So far they have been unable to get me any aide. He really needs to go more often but with my wages paying for most everything one day is all I can do.
It costs me more than that to have an aide in my house so I can get out I live in The Villages and they do not seem to have anything like a day care that would work for my husband. He does so much better when there are people to socialize with that I feel bad I can't find anything. When we go to our support group twice a month, they take the spouses, etc. in another room and talk, sing, etc. He looks forward to it and is so much more alert and "normal" when he goes to the group.
Fort Pierce in Florida has an excellant day care center. At $55/day it is reasonable-but it adds up quickly when you are living on Social Security (what a misnomer). They do have scholarships. I'm very surprised that The Villages doesn't have a program as it is so huge.
Your support group sounds like ours. Sid loves his group.
I mentioned this on another thread somewhere - it is very important that it be an Alzheimer's specific day care - those people are trained very well - they know how to handle AD patients.
It is an absolute disgrace that The Villages doesn't have an AD Day Care. Of all places, The Villages should be well equipped to handle AD patients. Anyway, I would suggest that you discuss the situation with the social workers from your AD support group, the Alz. Assoc. in your area, the Elder Care services in your area, and anyone else relevant who can get an AD Day Care started in The Villages.
For those of you not familiar with The Villages - it is a huge self contrained complex that is like a city in itself - retirement community that offers every amenity, social group, and activity that you can think of. But apparently not an AD Day Care.
You're absolutely right...it's a disgrace that The Villages has chosen to ignore what is surely a large population of people who could benefit from day care. What I've gotten from people who know is that the image they want to portray is vibrant, young looking, active retirees that golf, dance, shop, etc. They do not want to have pictures of AD patients on their upbeat tv commercial. The saddest part is that we've only been here since September and my husband never really got to enjoy the retirement community that he picked out! The support group that we go to expanded to 2 groups that each meet twice a month because they are so good and the demand is there. They are run by a church group who looked into the possibility of day care, but insurance regulations stopped them. However, The Villages is taking is plenty of money to be able to run a top notch program for AD patients. And everyone I meet is so kind, helpful, and supportive when I tell them about my husband. When he could still play golf on the executive courses, people would compliment him on his shots, find his ball, etc. I'm sure they could staff a center with great people who live right here. I've been doing what I can to get something moving, but, as you all know, most of my energy goes into this mindless daily care of my husband. This website has been a real lifesaver on those days when I feel that I need to communicate with someone who can understand what I'm talking about.
Interestingly, my mother lives very close to Ft. Pierce with my dad who has Lewy Bodies Dementia. But she has never thought that he would go to a day care. I'm going to tell her to look into it. Thanks.
My concern now is to find someone who can take care of my husband for 3 days when I go away later this summer. I'm sure that someone living in this community would do it, but there is no way to find the resources that exist. I checked with my support group, but they didn't really know anyone. I don't think most of the people in the group ever get away. I'm 55 and am determined to carve out enough time to continue with a life of my own (even if only for a day a week) while I take care of my husband.
I have just started my wife in a new Adult Day Care center near our home. It is so new that it is not yet fully licensed, so at this point my wife is the only client they have. They took her because, over a year ago when they asked me to be on the advisory board, I said I could do it only if my wife joined me at the meetings. This gave them a chance to know her, and her a chance to know them. Still, she was reluctant the first day (yesterday), but when I picked her up said she had had a very good time. I'm not sure of the cost yet. I know they were talking about $15 per hour. Since she will be there only 2-3 hours 3 days a week, while I go to the Y for exercise, I won't be paying a full day rate.
I just took my husband to a day program. It is not officially a day care, but an adult enrichment program at a local church that runs 3 days a week from 9 to 1. It is for people with early AD and others with handicaps. I had a hard time convincing him to try it. I went in with him and stayed a while, meeting the other participants. He seemed surprised when I said I would be back later, but did not object. Let's hope he likes it. He needs more stimulation so that he does not sleep all the time. It breaks my heart, but what else can I do. Sometimes, I feel like have have to sit with him all day long and that I must be 'catching' his AD.
As I read maryd's note I noticed that I posted a comment about my wife starting in day care almost a year and a half ago. When I first had her going there she would only stay a couple of hours (my choice). Then I started having her stay for lunch, but I joined them. Now I take her in at 9:00 AM and pick her up at 2:00 PM three days a week. They give her a bath each day, so I don't have to worry about that. She seems to enjoy it as she goes willingly, and once said she would rather go to the day care than go food shopping with me.
Maryd, I'm sure it's the best thing for both of you, if you can get him to continue to go.
Yours sounds very good, Marsh.
I didn't believe in even thinking about day care for us yet, but the care consultant at the hospital where we see the neurologist convinced me last time that I should get started on it, since it takes a while to get him approved, and it would be stimulating for him and provide respite for me. So I sent in the papers. There are two centers within reasonable distance where they have groups for his age and one is even a group for men only. They both have a waiting list. I'm not really in a hurry, but this is a first step.
My Mary is in day care four days a week now. Everyone asks if she enjoys it and that is hard to gauge. I only care that she doesn't object to it and now that the faces are familiar to her, I think she has accepted it as part of her routine.
Boy, Marsh, how did you find a place that gives her a bath? Our place has a beauty salon ( it is attached to a nursing home) but that service is an extra charge. The last time I had them give her a perm, she wouldn't sit still for them, so they sent a bad report back to the nurse at day care. I don't know if she is welcome back. I guess for a cut but not a perm.
I learned through my ALZ caregiver support group that 3 programs exist in my town; each held in a different church, each is designed for ALZ patients, each lasts for 4 hours, and each one is FREE. My DH attends his "Special Friends" group every Thursday from 10-2. There is one volunteer for each patient. Several nurses who are very knowledgeable about AD oversee the program. Lunch is included. I guess it is not officially day care since the program only lasts for 4 hours. However, every week is structured with music, exercise, videos, games, etc. At some point I may take him on Mondays and/or Fridays. This works for us, so far......
I had the caseworker from the Area Agency on Aging here this morning. She is sending someone from an agency to see if they can get me some help. It will probably be a day care situation. Probably the one I tried him out on 6 months ago. He is still at the stage where he doesn't actually need help bathing or anything else, but I think we are right at the cusp of him needing some supervision and he won't let me do it. I'm going to try and figure out a way to do it. Not really sure how right now.
We don't qualify for help - sliding scale or anything else - but this program does get a reduced price on the day care, so I might be able to afford it. We will see.
Bob--I saw Mary today when I picked Steve up from daycare. I probably wouldn't have recognized her, except she was on my mind due to your postings above. Anyway, this a.m., when I dropped him off, I asked if they bathe people, and the answer is yes. I was going to let you know, thinking you might want to change daycares, but Mary already attends there! I asked Tiffany to get in touch with you re the bathing.
By the way, in my opinion, a perm is an upleasant process for anyone to undergo. Besides having to sit still for a long time, the perm solution has an extremely strong, unpleasant smell. I can understand if Mary had difficulty cooperating during that ordeal. Her hair looked good when I saw her today, but I don't think it's worth attempting the perm again if it's a problem for her.
Baltobob, perms are less and less popular anyway, since most people enjoy less curly hair styles, even us "older" dames.
I give my husband an extra anxiety pill before we go for haircuts...Doesn't make him sleepy..but he's less agitated. This is working for NOW....but who knows for how long.
I took my husband to my hairdresser/barber this noontime. It was a lovely, balmy day, and he sat outside (so he didn't have to negotiate the steps into the salon) and Paul (whose mother has AZ) couldn't have been sweeter. He even trimmed his nose and ear hair - he has quite a few male clients, usually getting dye jobs. A pleasant experience all around. Paul said just call him, he'd come to the house!
We visited a day care facility this morning, a professional outfit that looked pretty good to me. I have to call them now to tell them whether he will come two days a week and arrange the details. We drove there in my car, it was only ten minutes away but he was angry most of the way, because he didn't recognize the route and would rather have gone to IKEA for breakfast. Until he spotted a KFC and I promised we could stop in there for lunch later. Once we got there he was polite and enjoyed the people, who were very friendly: carers and "clients" alike. I called it "the club." One of the ladies had brought a dog along. They explained the daily routines. We left after an hour (which had been agreed upon). Later I mentioned the experience a couple times and DH reacted favorably. He has no idea of course that the whole thing has anything to do with being dement. And he has no idea that he might be expected to stay there all day long. But: how do I get him to go along by himself in the van next week when they come to get him? If I talk about it ahead of time, he'll refuse. If I spring it on him at the last minute, he may be confused and upset. Suggestions? Has anybody dealt with this?
i agree with Bluedaze drop him off til he gets used to the place itself then spring the van on him later once he starts to enjoy and get settled in. one thing at a time maybe will help soothe things over. divvi
Jeanette-the transportation was always presented a myriad of problems for my husband. First of all, he was still raw about having to give up driving and resented anyone but me carting him around. Second, there were a parade of drivers--he never really got to form a personal relationship with any of them. Some would allow him to sit in the front passenger seat, some wouldn't. That is never a good thing. Also, he wasn't crazy about some of the people who rode in the van with him--I guess they were much further along, and in the early stage, that added to his unease. At the center, he could sort of seperate himself from anyone he wasn't comfortable with; in the van, he couldn't do that. Bottom line, I would really recommend you doing the drop off and pickup. What you lose in convenience, you gain in avoiding stress and possible behavioral issues. Another plus, when you do the transportation, you're not working on a schedule. Whenever you both are ready, you can go, and the same with pickup. In that way, it's less regimented. I've been doing this since April, it works much better.
I drive DH and pick him up from day care. The way I got him started was telling him that they needed help and he could volunteer there. He goes three days a week.
I haven't done day care yet but I have done respite care for multiple days. I worked with the ALF and decided not to tell my husband until right before I took him in. He really didn't understand why he couldn't stay home alone. In the end, he was hesitant but he went because I asked him. The only thing I would of done differently the 1st time was to not leave a cell phone with him.
I also hired someone awhile back to come in 2 days a week to help me. This was before my husband had any big downword turns, he was about stage 4. He didn't like the idea but the caregivers and my strategy was that she was there to help me. Over time, he came to trust her and now she helps him with everything from showering to taking him to get his hair cut. When I head out when she is there, I just tell them I'm going. She leads him or gets his attention and I'm free to come and go. The only 2 days that I can do that are when she is here.
So how do you decide that your spouse cannot be alone. He, of course, is furious about the idea of someone coming in. He is in stage 5 but no dangerous behaviors, just not doing much. I work fulltime and am not ready to quit. I keep waiting a little longer in hopes of a solution that won't cause so much rage.
I'm afraid you may have to wait for some precipitating crisis. If you do the proactive things like stopping the driving, disposing of guns or ammunition, installing rails etc in the bathroom if he's accident-prone, setting up some kind of stay-in-touch phone or monitoring device, then I think I'd just wait. Does he have things he likes to do at home? Any neighbor you can enlist to check on him from time to time? Would he enjoy netflix movies? Some project? Solitaire on the computer? I had to wait until he left the kitchen sink faucet turned on for hours, flooding the place, before he'd acknowledge he had problems..
My husband was between stage between stage 4 and 5 when I brought help into our home. She started by just helping me with laundry, cleaning, offering to make lunch for husband, getting husband to go with her to take the dogs for a walk, etc. Over time as his AD progressed, she was there and was gaining his trust. Now she is able to work with him really well. I did have to lie to my husband up front but it worked realy well.
JeanetteB - I was very lucky. My mom works in a group home for mentally disabled adults. There was a women she worked with that was looking for some work. I had met her a few times and talked to her. She had some experience with AD but she did a lot of research. It has been great. She started coming in at 9:30 in the morning so my husband was by himself for a few hours while I was at work. It wasn't a big issue because he was sleeping late. He gradually started getting up earlier or I had to work later. She started coming in earlier and works later as I need. She is a God send!
My Dh has not really done anything dangerous yet. But I'd like to get him into daycare because - he is so bored most of the time. There are so few things he likes to do anymore, and he wants to be going out with me all the time, then he wants us both to go to bed at 6 pm. (No, I tuck him in and make some excuse and go to bed at midnight) - he never wants me to leave the house without him so it is becoming increasingly difficult for me to go anywhere or do anything. It is almost impossible to shop (he hates shopping) or get out to see my friends (I do that anyway but very limited) He is scheduled to go in on Monday morning, so keep your fingers crossed for me. He has no idea. I'm going to start talking about it -- just a little -- tomorrow.
Jeanette, good luck. You are doing the right thing starting this early. I should have done the same last April, but I was afraid he would leave them since he was regularly taking long walks. But what you described, including my not being able to do anything on my own became more and more the way things were until I literally was totally isolated.
Abbygail--A nannycam setup in your home that you could view from the office? Also, the Alz Assn has a new product--a monitoring (personal GPS) system for early stage people who leave the house. You can check their website for info.
Well, Siem is gone for his first day of day care. And I am trembling like a leaf. I want to thank everyone above who gave me good advice -- and also apologize for not taking it! I decided after all to let him go in the van. The thing is that your advice, especially Marilyn's comment about her DH not wanting to be carted around by anyone but her, cleared my thoughts and made me realize that DH does NOT like to be carted around by me, but is always willing to go with a MAN who drives him somewhere. He has a friend who takes him out touring once in a while in a camper van, and Siem is so proud of being asked, and brags to me about what they did and how they didn't quarrel at all in the camper (not quite the way it works when I try to drive him somewhere). Last week when his brother took him in his Mercedes (an old beat-up thing, but he tells me they are indestructible) to visit their aunt, Siem bragged about that drive too. So I decided that letting him go in the van with a male driver would probably work just fine. And he went very willingly, although he has very little idea of what's happening. The big test will be seeing if he's willing to go again on Thursday. (And yes, I hope they will send Pete again. They promised that they try to send the same driver as much as possible.)
I feel like a mother whose little boy has just gone off for his first day at school. I just called the day care center because I had forgotten to write in the letter that it's important that Siem understands where the toilet is, because he often doesn't dare to ask. To my surprise he had already arrived and had refused coffee, so they gave him orange juice. They told me on Thursday that after the morning coffee they begin the day with a round of (re-)introductions and practising each other's names. I suppose that's what they are doing now. Thursday there was a lady who had brought her little dog with her. I hope she is there today too, because Siem loves dogs. Oh dear, I've got to get out of the house and get my mind on something else, or this will be more stressful than having him around!
Jeanette, I hope when Siem gets home he surprises you with how much he enjoyed the time at the daycare. I can imagine how stressful the first day is for the caregiver and hope all goes well.
Jeanette its funny i am stressing with you! haha. even if he says he doesnt want to go back by thurs you start the intitial ritual all over again til its a routine for him. remember to tell him that the others need him now as he was so much fun and everyone liked him so much. anything to get them to go! ha. i know how you feel about the first day at school. if you are like me even getting out its still on your mind til hes home and you know for sure! good luck, xxx fingers its a good time for him. divvi
Jeanette--Good luck on the first day!!!!!!!!!!!!!! A suggestion--don't ask your husband specifics about what he did--he probably won't remember. I just ask general stuff like "Did you have a good day?" "Are the people nice?" The daycares here give us a printed calendar with each day's activities and menus spelled out. I finally realized that since they give him a hot meal each day, I don't have to do more than a sandwich on those days for dinner. That helps. Of course, from what you've said about your husband's appetite, I'm not sure you could get away with that.
Marilynn, yes I was thinking about sandwich suppers too. But I'm worried that I won't get enough vegetables myself unless I develop a strategy of carrots etc. for lunch. (Cheese sandwich and cup of coffee is more my speed). Tonight is leftovers from Sunday dinner anyway so it won't come up yet.
Siem used to be particular about getting meat and vegetables for an evening meal but he has lost that distinction and is now happy in the evening with eggs/omelet/ grilled cheese/hamburger. Or (especially) MacDonalds. One of the ways in which life with AD becomes easier.
When my wife first started at Day Care I joined her for lunch there almost every day, and then brought her home after lunch. Now I find that I take her there in the morning and wait until 2:00 PM to pick her up (she's there now). I guess I joined in the lunch to satisfy myself that they were taking good care of her. Now I have learned to let go.
Actually, Marsh, I think that's a good idea in the beginning, if the spouse is doing the transporation anyway. I think it's a good way for us to see what actually goes on, how the staff interacts with our LO, etc. It wouldn't work on our current schedule, however, since I don't get Steve there till about 11--we aren't early risers!
Well, I had a very restful and enjoyable day and did lots of small things, including some visits, a little shopping and some yard work and some reading. All things I barely get a chance to do in the daytime.
Siem didn't get home till almost five o'clock (he left at 9:15 this morning) and was very tired. He wouldn't say much so I didn't ask too many questions. He did say that he had objected to the driver that he should have taken me along too! I had hoped that he would be bragging about his experiences, but he wasn't doing a bit of that. Seemed a bit bewildered and discouraged, and went to bed early. I asked about his dinner, at first he said he had not had anything to eat or drink all day, later remembered that he had had a good meal with tasty beef and mashed potatoes. I'm going to call the center in the morning and see if I can get their take on how the day went. I tried to call this afternoon while he was on his way home but there was no answer, I must have been too late. I'm disappointed and I don't think it will be easy to get him to go on Thursday. But I won't give up easily.
It IS a long day. Maybe I can ask whether I can pick him up at noon, but I had got the impression that they did the most fun things in the afternoon.
I'm sure it went well Jeanette. My husband thinks I put him in the ALF for respite care to have him killed. Their minds don't work the way they used to. If he is like my husband, he will go with brave face on because he doesn't want to look bad.
I know it must of been a difficult day for you but you will enjoy your time more and more. Take care.
So happy it went well for DH, Jeanette. If he's only going to go one or two days a week I'd try the full day for a month or so to see how it goes. Seems if they pick up at 9:15 and you go get him at lunch it's hardly worth the effort. Here's hoping Thursday goes well. Keep us posted.