joan I just read your blog for today and i am glad that you are realizing that even though your DH has an illness you cannot and will never be able to MAKE him happy. what you said about wearing yourself out trying to do whats best for him is exactly what is happening. all those events you planned for his as activity are probably forgotten faster than the time it took to plan them. this disease as you know works very strangely on the mind, mostly because the devil is the driving force and he brings up anything he can to drive wedges in your relationship. there is no point in being frustrated with yourself or your DH as his memory is wiped clean almost as soon as the words are spoken. one thing that i do to keep my sanity and try to keep things on an even keel is only do what my DW asks me to do and when she saks. if they are happy doing nothing then so be it. remember when as achild you son would keep himself entertained doing something very simple, well as you mentioned i two year old is where his mind goes when the outburst happen and you can't rationalize with an angry two year old so you either ignore them or send them to their room. and COOL down remember your blood pressure can't take the stress and without you where woould he be.
Thank you Joan. I have just stopped feeling guilty because I can't fill his day with stimulating, fun activities. If he wants to do nothing, then so be it. There's little enthusiasm with the stuff I plan, so I'm going to just back off. Luckily, there's a lot going on here at our retirement complex and he can either stay in the apartment or come with me. His choice and I don't push him to join me.
Joan, I have been where you are right now.....I tried and tried and tried to keep my husband happy, I spent loads of money, time and energy and to no avail. I always remember hearing the phrase...."you didn't cause it, you can't fix it." Well, how true that is.
I chose to do what I needed to do to keep myself going. I put him in daycare and went about my business. I spent time with friends, I sat at home and enjoyed the quiet, I did fun things with my grandson. My husband was not happy at daycare, but he was not happy at home either. The disease made him miserable...not me, not the daycare people, not the moon and the stars, the disease did...it was what it was.
He, inevitably, got worse, had to be placed and eventually came home for three years until he died. All that time I maintained a life of my own....not ignoring him, not abandoning him but also not ignoring or abandoning myself. What if I had not done that? Well, the story would have played out the same way...he would be dead and I would have ended up (probably) ill and bitter and alone.
I only did what was the best for me and for him. He was never going to recover....his fate was determined. My life was and still is an unfinished book.
Take care of yourself as you take care of him. We are important parts of the caregiving equation and if we falter and fall...well, we know what happens.
Hugs to you, Joan and all of you still in the midst of this....
Take a deep breath--or two or three--my emotional wall helps, but hb doesn't complain much; so that part is easier. The stress of doing everything while he sits and watches tho' physically he could be doing much of the stuff around the house has built some resentment. I'm waiting for a call from doctor's ofc for appointment w/a cardiologist. I've always had excellent heart health, but something seems to be going on now. So, yes, to all of us: take care of ourselves!
Zibby-not that it helps-but your husband just sitting around while he could be doing something more productive is just another nasty part of the disease.
I'm sorry this is happening. My husband does not rage at me but he always, always wants to go somewhere and some days I just don't have it in me to do that one more walk around the mall or whatever HE wants to do. From the minute I get up in the morning he starts talking, asking, whining. I'm in the process of adding a third day to his day care just for some quiet time. I feel a bit guilty about sending him three days a week but I need it for my own mental health and I am NOWHERE as busy as you are. So, yes, take care of yourself first.
I honestly don't know how I would handle it if I had to plan so many activities for my DH. All I have to do is take him out once a day, either to Lowes, Walmart, somewhere where he can walk around or use the electric buggy- he CAN still drive that! But I watch him. Don't take him out to many social events - a few, if they are short and not too many people around. Otherwise, he's happy at home, walking the dog, playing games on his laptop and just piddling around the house. He helps me cook by chopping, cutting, setting the table, cleaning up the table, putting dishes in dishwasher, etc. We manage to stay somewhat "busy" throughout the day, with some rest in-between. Not sure I could "keep up" with what all you do, Joan! Wonderful blog today.
It was a wonderful blog. I couldn't do all that either. The seniors play golf on M, W & F, and if all conditions are go (weather, how he's feeling, etc.), I drive him to the golf course and he calls me to pick him up when he is done. That gives me 3-4 hours to myself. He still likes to go to dinner at the country club on Friday night. I have been trying to get him to go to a high school baseball game with me since the season started (grandson is on the team), but so far he hasn't. But I go anyway and so far he is OK home alone. I won't confine myself to the house until I have a reason to think he should not be left alone.
Trying to maintain them in constant activity is draining not only for the caregiver but for them as well. remember the constant wanting to go home, DO something is all a part of the neuroses that is part of AD. just because they say something doesnt mean it has to be taken literally. some activities daily and downtime and quiet time is much needed as well. it should be not too much not too little in my opinion- having them constantly on the move is draining and can cause them upset and anxiety LATER in the day like sundowning. i went thru all this as well earlier iin the disease and a nap and quiet time after some activity was a must. just like small children lots of activity leads to a loss in energy. not to mention the constant mental anguish for yourself to keep them 'going' and entertained. thankfully the need to 'go' subsides in time as well. give yourself a break and do whats good for you and try to work out a stimulating plan with something that is beneficial for him but not too overstimulating or demanding on either of you. divvi
Hay I hear ya..my hubby for the most part is cheerful and is not resentful about anything. But just this morning he asked ME to rewrite his sliding scale for his insulin injections. I set up the med box but he takes it ( and I check) on his own so far with no problem. So when he asked me to make a duplicate of his sliding scale I said to him he can do that. He said there is so much writing on it...well just copy it the way is it. He reads and writes ok so far. It was just a "honey do" and I have so many of his tasks that he never bothered to do before he got this &^%# disease that when it comes time for me to do things I like, I am still stuck with the chores he should have done.
It is now clear how long he has had this ((&*#) disease coming on..at least 3 years ago I cleaned the garage and left his took bench for him..when he had a TIA I said I would work with him, set up a table and he could tell me what is important and what is no...nothing happened and I just decided to leave it for him....well it is still there. I fumed for a couple years about this.
Now only in the last two weeks, have I learned from his doctors that they saw this at least 2 years ago..no one said boo to me..without his ok they could say nothing so all this time I thought the problem was mine!!!! ( need one of those frown faces here grrrrr : (
Isn't it amazing that AD people can remember certain things, especially when they feel strongly about it. My DH has a problem with the MRI's he has to do for the BAP study. One day that is all he talked about, over and over. The last time he had to have one I did not even tell him he was having one. The doctor told him once he got there. He did not mention to the doctor how much he hated them. Funny, isn't it.
Congratulations , Joan. You woke up. . .and...smelled the coffee. Now you have to think a little and make some changes. You cannot be all/do all for both of you ...AND work too. On your new activity calendar here are some ideas: Mark in the things that MUST be done for each of you and for work/the household. Then mark in things for the 2 of you together (support group), finally things for each of you separately. Keep in mind transportation for activities can be worked out--you don't have to do all that yourself. Also, some things for you can be while he does other things. Draw some boundaries. On a week where you do more driving he goes less places. Place limits on the number of outings. Few people I know go on day and evening outings the say day or everyday. Not every minute has to be filled. Remember, you take care of the caregiver first. No one is responsible for making anyone happy, but themselves. Also, cramming Sid's days to the max is just cramming them full. It's not going to change his Dx or the outcome. It's not going to change his outlook. And it's not going make anything better for you. Lighten the load and you'll b oth be happier eventually.
Oh, how I understand how you must feel. Fortunately, I don't have to worry about keeping him busy, he's happy just lazying around all day. His reason? I worked all my life, now I'm "resting." Of course, I'm not resting! He used to help with the dishes and setting the table, dusting, little things, but they helped just the same. Now he "puts away the dishes," but in the last couple of weeks I'm finding the dishes and pots and pans in way different areas of the kitchen than where they used to be kept. Of course, I don't dare correct him, so I have to take the dishes out and put them where they belong. Late yesterday afternoon (out house is being redecorated so we had some time together) we talked about the "old days," had a nice dinner together, everything was fine. He brought his cassette with his pills in it and asked me which ones were the ones he was supposed to take. I let him think a little about it and eventually he realized which day was the correct one. All I said was, "Please don't put the cassette in your room. Leave it downstairs." Well, you would have thought I had asked him to paint his room or something else as complicated. He literally screamed at me, called me a name under his breath, and slammed his door. I just stood there in shock.
Joan, it doesn't matter what we do for them. I don't think he ever thinks for one minute what exactly I do for him and for this house. So, you're right. We should think about what we need because even if we make them unhappy for a little while, they'll forget it in an hour or so. Good or bad, it just doesn't matter. I'm so glad you wrote about this subject. Everytime someone talks about it I feel just a little bit better if I don't cave in to his demands or rages.
P.S. Does anyone else have a spouse with dementia who seems to think we exist just to wait on them? If I bring him a sandwich (which I did today because he didn't want to come into the kitchen to eat), he'll ask me to go down and get him something to drink. I told him I wasn't his maid, go get it himself. He ate the sandwich without his drink!
When my dh was first diagnosed I tried to keep him busy; now after 4 years he can't do any of the things he used to do like play golf. I do feel bad that most days he sits in front of the tv but honestly I don't think he's up for much more. Finally to take care of myself, I have been taking him to Daycare once a week and I think I will have to up it to 2. I wish some one would stop and see him or take him somewhere, but sadly they all have drifted away. I always say that people's true colors come out during a long illness.
Once again, I guess I should feel relatively fortunate! J stays pretty happy with what we do. My goal is, primarily, to keep myself sufficiently stimulated by getting out for lunch, doing some various shopping errands, reading a book aloud that we both enjoy at home, watching tv programs that we both enjoy. Certainly I crave more "meaningful" activity, and intelligent reciprocal conversations...and I relish such opportunities when I get them. But I'm grateful that J's most difficult personality trait is occasionally getting his nose slightly out of joint when I help him a bit too obviously.
This is all so true. My AD Spouse wants everything, now, exactly the way he wants it with a big Disney World grin on my face. The classic two year old. So when he started to blow up this morning over some nothing issue; I got in the car with my dogs and went for a ride in the country. I was immediately relaxed. As I was going over a Mountain Pass it started to snow hard. But it didn't stop me from smiling and singing. Being in a blizzard in the mountains is fun compared to being shut in with an tantrum throwing AD husband. Had a nice lunch and brought a pizza home so I don't have to cook dinner. It is very comforting to know that I am not alone. And I wish all the others well.
Joan, your post and others here describe what I believe killed my MIL. She was the same way with my FIL - everything was about him. She kept him busy and entertained. She died of a massive heart attack in 2001 and he still survives. Whether that made a difference for his longevity or not, I don't know. I just know it cost her dearly - her life. I will not do it like she did. My hb is still able to get up and go do things and is free to do it. But HE chooses to sit in his chair watching TV and doing his word search.
If we want to be around to have a life after this journey we have to think of us too. It can't be just them.
Thank you, everyone, for your supportive comments. I didn't realize that blog would hit home for so many people. I'm a pretty slow learner when comes to the Alzheimer business, but once I finally adjust (I always say "adjust", not "accept") to another AD situation, I adjust, and wait for the next bomb to drop.
After a very busy day - diabetes nurse here first thing this morning; doctor's apt. after that; me going grocery shopping; PT here late afternoon for Sid, I took the evening for myself. His dinner was delivered as usual. He was settled in his recliner in the den, and I went to my friend's house. She is a recent widow. We had a wonderful time - wine, fruit, cheese, dinner, and stimulating conversation that was 90% NOT Alzheimer's Disease. I felt relaxed and refreshed. I intend to do it more often.
The continual LEARNING just keeps on keeping on. Joan, glad to see you've regrouped. What I discovered is that, we can do a weeks worth of activities and DH might still behave as if he's 'trapped' here in the house and has done nothing and antsy ready to get out and do something. It has been hard to grasp that there is NO residual VALUE in the doings themselves. Each event is just that and when we are back home, its as if he's been no where and done nothing.. If risperadone stops working, Joan. We're going to be in huge trouble because I just can't do it. I'm NEEDING the day care program for him even if he is not content there either. Thats the fact of it.. He's probably not going to be content there. No one can stay one on one with him constantly. I appreciate the other comments about this.. also about the times of doing nothing. I've probably misjudged some places because the 'campers' seemed to be sitting..doing nothing.
Joan--It sounds to me that if you continue at your current pace, you'll burn out long before Sid does. What people do around here, if their AD spouses will not go to an adult day program nor tolerate an aide in the home, is to hire a driver and delegate the driving responsibility to them. There are many retired people who will do this for a nominal fee--I would think in Florida, there'd be even more. Delegating can be a hard thing to learn and accept, but I believe it's a critical survival tool for those in our shoes.
Yes this regrouping thing is an ongoing thing. We too have had rounds of doctors appointments last week and one this week, some coming up next week. DH is diabetic and on insulin. I knock myself out reminding him to take insulin before meals only to find out he hasn't done it. His glucose readings are too high and I know he is not eating the things he should not but still the readings are high. Had his physical yesterday and all was good. He denies drinking more water to the doctor to which I stated then that I see he is drinking more water and running to the loo like a race horse because of the sugars. I can tell this to the diabetic nurse too. And what do I get for replies>.. " Well YOU have to ..........." .fill in the blanks.... I said.."yeah..just one more thing for ME to do. How about you come live my life for a couple of weeks." Wizards of smart (sarc). Everyone seems to be so free telling ME what I have to do and the list just gets longer. Like so many posted here, however, DH is happy to read, watch endless TV and run that remote around. I can' even watch TV because I think his attention span is reduced. I have family come up once a month now to give me time off... As so many have said, your true friends appear when there is an illness like this, the others drift off..they just can't be bothered.
Joan......What a great blog.........I've read it over and over again, but am afraid I've given up. I just can't deal with this anymore. I thought I was strong, but I guess that is my downfall.
Ann, you CAN'T give up now. We won't let you. We are all holding hands in a big circle and you must not break the circle. We have been made stronger by all our sufferings so I am telling you right now - you are stronger than you think.
So sorry we couldn't get together recently while I was in Vt. Would have loved to have met you and your dh. Maybe I will have the opportunity to get up again and we can arrange something.
Flexibility and Regrouping are important things to remember, even AFTER. I am regrouping and looking forward to enjoying my new life. I think of DH everyday but do not mourn his passing. Like many have said - I did that for several years and now it is ME time for the rest of my life. I choose to live in the future - not the past. ((((HUGS)))))
Oh, yes. The diabetic doctor gave him a big lecture about what to eat and what not to eat, and blah, blah, blah. I took the doctor aside, and told him I was completely worn out from everything, and I just could not be the food police. He doesn't remember what he eats, and thinks when he has fish and chips or "all you can eat" ribs at restaurants that he "hardly ever does it" so it doesn't matter. And if I say no, he pouts and complains. The doctor was very understanding, and added a second medication to control the blood sugars. I no longer make a fuss about what he eats. Does it really matter if he dies from diabetic complications before he dies from Stage 7 Alzheimer's Disease?
I really am making changes for me. No more trying to explain things to him; no more arguing about food; no more expecting him to help. No more feeling guilty if he complains that he has "nothing to do and nowhere to go". He has plenty.
So now, I am off to the gym BY MYSELF. One hour of no working, no caregiving - one hour just for me. Maybe if I keep up the "me" stuff, I will lose weight and get into better shape and better health.
Joan---I have been through all of the above, including four or five panic attacks a day before I had to place my husband. Even after placement I was riding the roller coaster of AD. I would go see him several times a day. He was pretty even tempered most of the time until about a year before placement...then turned very aggressive! Recently, while was at a very low point, crying all the time etc. I had a talk with God. I asked him to help me make my life ....just as important as my husbands life. Not more ...no less...just even. It has helped me in many ways.
Joan, one more thing you need to add. You need to allow the word "accept" into your life. Adjustment is good, but if you don't accept as well, you are going to run into more brick walls, until you do accept that this set of diseases are what they are.
I think that almost all of us run into something that makes us stop and think at some point in the disease. For me it was the one violent episode. It had gone from threatening me with bodily harm to threatening me with killing me to the beginning of something physical. I made a decision that day that I wasn't letting him, or the disease kill me. I chose to live. I drew a line in the sand. And I did it before he actually hurt me.
If it had been necessary that day I'd have let them take him to jail or to a hospital, and frankly if he had gone to either of those places I would not have let him come home.
Joan, YOU are entitled to live too. And you are entitled to a life. So am I.
Today, just a few minutes ago he got mad at me because when he took me into the bedroom to see "the man" there I told him it was him in the mirror. Usually he and the man in the mirror, the window, the back of the car have a grand time together talking back and forth, but for some reason today he didn't like that man in the mirror. There is literally nothing I can do about the man or about the mirrors. If it wasn't the mirrors it would be the windows. I can't do anything about those either. It just is what it is. If he wants to get mad at me he will get mad at me. Since I can't stop it, or do anything about it, it also is not my responsibility.
I deal with him being mad and raising his voice, or slamming doors, as long as that is the limit of the violence. If it gets worse I'll do what the Alzheimer's Association told me to do. I'll dial 911 and ask for someone to take him to the hospital. I have this feeling that once I made the decision to do that if my situation got dangerous he knew it. Something is keeping him from escalating. I think that when any of us make the decision of this and not a step more, they know.
Like Grannywhiskers said. Once she made the decision that she was just as important as he was, life changed.
Deep down, I know what I have to do for myself. But, it isn't easy to do. I think this blog has been the best one for me. Trying to forget the things that are said to you and turning the other cheek is sometimes almost an impossible thing to do. Everyone, literally everyone, even support groups, keep telling us, the caregivers, what we have to do for our spouses, but what about us? As Mimi states above, "just one more thing for us to do." Our lives seem to revolve around our spouses and there isn't much time left for us. This time I spend here gives me a chance to vent, to see that I'm not alone, and sometimes, like right now as I sit here typing, feeling anxious because of what I've been reading and realizing it's so much of what I feel. I was just going to say that "no one in my life truly understands," but it's really not true. The doctors, female neurologists, DO recognize, probably even more than I, that I need more help and more time for myself. My daughter keeps telling me she can come and stay with her father while I do something else, but it's only for 4 hours, she needs to be at the school bus stop when my granddaughter comes home from school. After I typed that I see how really silly it is to think it isn't enough time for me. I was going to say "What can I do in 4 hours", but it's something, isn't it? Four hours. All to myself. I must do it. Right now, just reading Joan's blog again and putting these thoughts down is literally making me shaky. It has brought home the way I really feel and it's scary. I must try to think of myself. I keep saying this over and over in my mind, but I don't really do it. He comes first and I know it's wrong. I know the saying, "The caregiver must think of the caregiver." but I don't put it into use the way I should.
As most of you know, (ad nauseum), I have Andrew coming two mornings a week. Just knowing that he's coming is a relief! Since the Deluge, there have been other things for him to do - and he loves doing them! more than tending L., who prefers for me to tend him anyway. I've found that knowing I CAN walk away while someone else tends is almost as good as having them do the actual pottying, bathing, dressing routine. Meanwhile, A. cleans, works at straightening up the basement, helps me hook up the new dehumidifier, etc. So FOUR HOURS IS A LONG TIME!! Even if it's going to Home Depot to find the right cord for the dehum!
If our spouses could be their normal original selves for just a few minutes, what do you think they would say about everything that we do for them? I know mine would be yelling at me for giving up so much for him and growling that I should not be doing all that I am for him. He would never have expected me to do what I do for him. He definitely would not want me to sacrifice my life for him.
Joan, the way you talk about Sid and the way he used to be, he would not want you to go crazy the way you are, nor would he want to you sacrifice yourself to the extent you are. He might even want to know why you are putting up with him and haven't placed him yet.
Doing things for us that help keep us balanced and in our right headspace is good for them in the long run. We are better able to deal with the crisis that come along with their care. For someone who has no familiarity with the requirements of taking care of a person with this horrible disease, we may seem selfish and inconsiderate of our loved ones but they haven't walked that mile in our shoes and they are ignorant.
Those comments about the super woman that has to have a career, marriage, kids and do it all perfectly - that is just as unrealistic as us expecting ourselves to be superpersons too!
The VA today approved a third day for my husband to go to daycare each week. I was feeling a bit guilty about pushing him off on others for another day, but my family keeps telling me to do it for myself as he goes willingly and is starting to participate more. Even the director at the facility asked me if I was doing things for myself while he was there. I'm just starting to relax while he is at the day center and doing things I like. I even made myself a hair appointment for next week, which I'm really looking forward to. Haven't had my hair trimmed in a long time.
My husband is still able to handle his daily needs but needs constant supervision due to his nonexistent judgement and obsessive behaviors. The staff at his day center have been wonderful and he seems to like them all.
Deb--Don't feel guilty about daycare. I've read that studies have shown that dementia patients benefit from daycare attendance and it slows the cognitive decline. Would we feel guilty about getting "treatment" for someone with any other disease? Don't look at is as "pushing him off on others"--adult day programs were developed by professionals because we laypeople just can't entertain our loved ones 24/7. (Joan's blog is a testament to that!) A good adult day program has every aspect planned to cater to the needs of the population they serve. You are being smart by utilizing the benefits for which he qualifies. If the VA will pay for 5 days, you might consider increasing it further in the future.
Thanks for the pep talk. Bruce (my husband) has been going for about 2 months now and he is just now starting to participate more in the activities. One of the male aides, which my husband seems to spend most of his time with, told me it does take awhile for them to be comfortable. When I went to pick him up today, he was doing a one-on-one cognitive activity with this aide. They also had someone come in and do some type of laughter therapy today which my husband really enjoyed according to the staff. I know I just have to trust the professionals to do their job. I've done everything to keep my husband occupied for the last 2 years and it's time I let others with different expertise do their thing. I like the way you put it as him going for "treatment". It really is, because I don't have the ability to keep him occupied as well as they can. Thanks again ☺
Thanks so much, Joan... You've uplifted so many of us...This is day by day adjustment.. After the last three days, of which DH remembers nothing, this is just the boost I needed..AND I will no longer feel guilty for reaching out and making time for myself regardless of the flak I get from ,he, who wants to vegitate no matter what I plan.. A dear friend recently commented that she never saw anyone so well cared for, have so many complaints...SO, to all of us,, KUDOS, others see what we're doing and say they haven't a clue where we get the wherewithall to do it.. It is what it is and WE HAVE no CHOICES but to do what is best...Thanks for letting me vent...loveya all.
Deb, Ironically, I also started my DH in daycare after 2 years of 24/7 togetherness. One thing we should all realize, we are fortunate to have the option of daycare available to us. My husband is second generation EOAD; when his Dad stopped working in his 40's, there were absoultely no programs available for him of any kind. A good daycare program is staffed by professionals and the way you've described your husband's program, it sound like they know what they are doing. When I get frustrated by the lack of good treatments or a cure, I remind myself that at least today there are good adult day programs and the few meds that can temper the symptoms for a while. That's a lot more help than my MIL had in dealing with Steve's Dad.
Can someone please tell me how you get a person who will NOT do anything he doesn't want to do dressed and out the door in the morning for day care? I can't even imagine it.
Well, I used to approach it just as you would with a two year old. You can bribe them, make a game of it and keep up a line of patter that distracts them from what is going on. It is a challenge and most of the time I ended up sweaty, exhausted, angry and crying. But, we got the job done and off he went....Day care for him was my motivation to get up and out of bed some days....
Not even the 2-year-old approach would work with mine. I would love to have some time to myself, but there is no way he would cooperate, not even using an approach such as this. I have never even mentioned the idea of day care to him. He would, first, be mortified that I would even suggest such a thing, because he is not a child and there is nothing wrong with him! Second, I'm sure he would say I didn't want him around anymore and that I don't love him. He would tell me he would go live with one of his kids, he's sure they'll take care of him (I know this because I've heard it often enough!).
Audrey, I'm glad I'm not the only one as well. If you have any luck in getting your husband to do it, please give me the secret.
I told DH he was going to work, that the people 'there' (never said daycare) needed his help, and then they'd ask him to do things. Work was always important for DH. Sometimes I'd give the center money in an envelope to 'pay' him.
I'm sorry I have no hints for you. My husband gets dresssed immediately upon getting up in the morning (he showers in the afternoon--or whenever the urge hits him) and the first thing he usually says to me is where are we going today. I call his day care "the center" and told him the VA wanted him to go. I'm lucky in that he will do pretty much anything I ask him--he really has very little opinion about anything. Bruce doesn't have any insight into his disease and will say there is nothing wrong with him, but he has become very childlike and trusting about most things.
I make shameless use of my dh's restlessness in the mornings. I have to make sure I get up on time, he gets up immediately when I do and gets dressed, although I have to be there to make sure he takes off his pajama, if he's wearing one. On nights when we don't have a bath at bedtime he sleeps in his shirt. I have to make sure he uses deoderant. Then we have breakfast and I have to make sure he takes his pills. I like to get all that done about an hour before the van comes, so that the Risperidone can do its work. And after watching morning tv for about an hour, he gets restless and wants to go out. I tell him he has to brush his teeth first. Sometimes he will, otherwise I give him gum or and apple a little later. When I see the van coming (he never sees it) I tell him OK we can go now, by that time he is usually very restless indeed and he willingly comes outside with me. He protests when he sees the van, but not badly and he always gets in with me. I give him a sack of grapes or something to eat on the way and I get out. It always works. I feel like a traitor but he never holds it against me.
I can imagine how precious they are! It's possible that your husbands are further along in the disease than mine. Maybe when he is that way, he'll go, but right now I can't see it happening.
It always surprises me when I read posts like yours JeanetteB.... The period of time where my wife (and I) would have been aided by such a daycare program shot by like a rocket. Today I would never use terms like restless or agitated to describe her. She sleeps or stares virtually all day. She cannot be made to look at a book or a magazine (she cannot hold one or turn pages). She does seem to listen to the TV when it is on and will sometimes respond to the dialog with simple triggered responses like "OK" or "Yes/No"
The ache in my heart feels like it has been there for a thousand years but when I think back on the progression of this disease it seems like it happened overnight.
Jeanette started day care early. That seems to be one of the things that makes it work. She also had a really safe day care to take him to. My first failure with day care had everything to do with it not being a safe place. He would have taken off from there just as he still occasionally does from here, and they could not have stopped him. When I found a safe place it took so long to take him there and bring him home, I literally wasn't getting much more than an hour to myself for the 4 to 5 hours he was there. I was driving 4 hours every day I took him. We applied for transportation and received it, but they won't let someone with dementia on the bus alone, so that also didn't work. It just wasn't to be.
By the way Thunder, the second day care would have had no problems taking care of your wife. They had two programs there, and they had "sleepers" carefully tucked into their recliners in the second program along with a man who paced all the time he was there perfectly safely and mostly under the eyes of staff. Amazing place but almost an hour away from where I lived.
I worry about how long dh will be accepted at day care but I think that now he is "in the system" they will help me find other options if this one becomes unacceptable. For instance I don't know whether he would still be able to go there if he becomes incontinent.
Bev--I've been using the same approach as Bettyhere to get my DH to daycare for almost 4 years now (minus the money in the envelope). I tell him he's a volunteer and his attendance allows us to get money from his long-term care insurance policy. They still give him "volunteer" jobs to do, even though he's now in stage 6. If dressing in the a.m. was a problem (it isn't), I would send him wearing the same sweatpants and sweatshirt he sleeps in!!!!!!!!!!!!!!! I have found that providing the transportation myself has avoided a host of problems and lots of grumbling about being picked up. If I had to, I'd tell him we are both going to "volunteer" and then I would drop him off and quietly leave. I have never called it daycare, but rather, a club, center, etc. After 4 years, he is still so grateful when I pick him up--he says "these people are crazy here"--but he still goes!
My husband is very uncooperative. He's smart enough right now to realize I'd be telling him a story. As far as he's concerned, I'm really not doing anything special for him, nothing a wife wouldn't do ordinarily. We're children of the '50s, when the husband was the boss and the wife took care of the duties of the household, so he really thinks I'm doing what I'm supposed to do. Perhaps this is unfair of me, I don't know. If someone else asked him if that was true, he would say, "Of course not. I help around the house." Right now, he's in his room, "cleaning it." If I went in there now, I would find it the same as, if not worse, than it was yesterday. I know to most of you who can get their husbands to cooperate easily with "white lies" I must come across as being uncooperative myself, not willing to do what I have to do to get him to go to daycare, but that is just not true. I know him, and he isn't just acting this way because of his disease, this is part of him, this need to always be the one in control. I've gained many rights during this marriage, especially in the second half, but, right now, this is what I have to deal with.
Bev, I am married to a "little dictator" or at least he was when he was "normal". Being 23 years younger I grew up in a different generation and had some different ideas. He could try and dictate all he wanted. I had the option of listening or not. It worked for us.
The path of this disease is very murky and what works for one person may not work for others. We were always very honest with each other so telling him a "white lie" just didn't sit too well with me. I had the most difficult time accepting that this was okay. It still came down to what helped to keep him calm and in touch with reality. Their world truly isn't ours after a while. It sounds like you have worked out a great way to deal with your husband that works for the two of you.
At stage 7 with him no longer really talking, those white lies are not needed anymore. He sits around and does nothing most days. Some days I will bring in a book and read to him - he reacts a little so I think he likes it. It wouldn't surprise me though if it wasn't the sound of my voice versus what I am reading that makes the difference.