I can't believe we are at this point, but Sid will start the "Activities Center" (We don't call it Day Care) next week. Wed. and Friday. The case manager was here for an hour, mostly just asking me Sid's medical and functioning history. I signed a lot of papers, and we are funded for 5 days, but I am starting with 2.
In my mind, I'm still telling myself that he's not ready, not bad enough, and won't fit in, but even if that's true, he will be soon, and I'm not refusing the funding.There is no possible way on earth that I could afford to send him on my own.
To be honest, I feel sick to my stomach thinking that my husband, the once vibrant, energetic, enthusiastic man I married - my protector - is going off to spend days with demented old people. That he is one of them. To those of you who are sending your husbands/wives to Day Care - how did you feel emotionally the first time you took them?
I DO NOT feel as I did when I dropped my son off at nursery school for the first time. Yes, I was sad, but my baby was growing up and going into new, exciting territory. Each time he started something new, it was a FORWARD milestone in our lives. Sid is going BACKWARDS. Each new step is a decline toward oblivion. So, no, it's not like sending a child to school for the first time.
Oh HOORAY for you guys Joan! Sorry I cannot comment on your question, but want you to know it will be so good, you know what, those old demented people likely still have lots to offer, and some will certainly not be too far along and be able to talk and laugh with Sid.
I wish I could find somewhere for my guy.
Joan, I just got word from the Neurologist that my dh is quite "declined" since 6 months ago, though I knew it. it just slayed me. I think we always will have a bit of denial that they are really going down. God bless you, and I cannot wait to hear how Sid has adjusted and it is really great for you both.
Love and all the good stuff to you, and thanks everytime for this group.
Oh, Joan, it will be OK, Sid is very sociable and (dare I say it?) he will be with others who are just like him. He will relate to them on the same level and not have to pretend and work so hard to fit into the reality of life. The first time I took DH I was required to stay out of sight but be there--just in case. When I peeked around the corner and saw him involved in really 'childish' activities, I backed into the corner of the room and wanted to pull up the carpet, dig a hole, crawl in and close it in after me. Let those of us who have done it be with you, hold onto us, we're here.
Joan, like you, I did not think my DH was as bad as some of the others in his day program. I had my worries that he would not fit in. The first week I went back to pick him up and they were doing an activity and I realized how mistaken I was. He was participating, but had some difficulty with the activity. Socially, he fit in fine. He sits with a group of older women who make a fuss over him and have a good time. There are some participants worse off than my DH, but he fits in just fine and has even told me he is in charge there. We started in July with two days a week and I am thinking of increasing it to 3 days a week. I hope it goes as well for you.
I wish there were one nearby that was all about oldish demented folks, and not about developmentally disabled folks. Not begrudging the second category a good place to go, it's just that I think their presence is what made Jeff immediately feel that he didn't belong in that "activity center" when we visited a while back. AD people need to perceive of themselves as "normal" and they know the developmentally disabled are, well, disabled.
When my wife started at day care she was the only one there since they were just opening. She soon came to enjoy it, particularly when local kids from a day care came to visit. The director of the day care took a wonderful picture of my wife with one of the children. It has been used on the cover of the annual report and in an ad in the newspaper. She's not getting as much now since she tends to sleep most of the time. She's been going for almost 3 years and is now up to 6 days a week. She started at 3 days a week.
So happy for you Joan...best wishes that it goes well.
good to read this thread today. Only just last night I was talking to Dh about trying out a "day centre", just so he could have some outside stimulation and someone other tham me to talk to, he does nothing all day...but no he won't have it. There was no convincing him he should try it, he might enjoy it. He has never been a very social person, we have always done everything together, he never had a good mate/ friend to talk to....so when I saw the conversation was getting heated, I had to let it go! Oh, how I wish he would at least try it...I could do with some time to myself, he's like my shadow.
I'm glad that you are starting day care for Sid. We don't call it day care here either. It's the "center". When I first took him, I felt guilty and anxious. I didn't leave the area at all just in case he got upset and they needed me to pick him up. It took a while to get used to having that time. He went so well and was well liked for the past 18 months that he has been going. He started at 2 days a week and slowly went up to 5 days.
Now he has declined and some behavior problems are coming up. I don't know how much longer the center will let him come.
Joan--you asked how we felt emotionally the first time we took them. For me it was 5 years ago, my husband was in the early stages of AD. I remember feeling: anxious, nervous, concerned that he would "behave" and cooperate; relieved, hopeful and thankful for the potential of some respite. So in my case, you can see it was a mixed bag.
I know it is easier said than done, but please try to avoid dwelling on what Sid once was as you take him to daycare. It makes this and everything else to come even more traumatic. Sometimes, when visiting Steve at the ALF, I still can't believe he is the same person and lapse into the type of comparison with the past that you described. I make a conscious effort to get my mind off it; there's no point. The man he was is gone for good and not coming back.
Honestly, it will be hard because NOTHING about this is easy. I thought sending my child on a bus to go to school for the first time was hard, but when you watch your husband being loaded on a bus with others who are no longer talking the pain is intense, but only for us because they don't have a clue. HOWEVER, a great surprise to me my DH loves it! He does not realize it's daycare. Your correct, it's an activity center. I told my DH he still has a job and it's to make the people at the center smile and feel loved. He took it to heart because I was told he loves joining the staff meetings. My heart goes out to you.Y OU WILL get through. Today I placed my husband on a wait list for a wonderful facility. He is number 2. So my process begins with applying for Medicaid. Again NOTHING about this is easy, but we will get through....Together!
Joan, you make an excellent point when you said that you can’t compare taking your husband to day care with taking your son. You are so right when you said that taking a child to daycare is part of the growing experience, whereas taking your husband is a step backwards. I hope for your sake he goes willingly & enjoys being there.
emily, we had the same experience you did. The only day care in our county (St. Mary’s in southern Maryland) is classified as an Adult Medical Daycare & like the one you went to, Tom was aware enough that he didn’t feel he belonged there. He has declined in the past year (it was last January when we went) & I’m hoping that it will work this time. Julia, I know how you feel. When I tried to have Tom go to daycare last year & I left him there they called me after a half hour. I had to go & get him & he was MAD! For the rest of the day he was very angry & yelled at me accusing me of taking him to a “nursing home”. I didn’t take him back because I knew that he wouldn’t stay. I’m hoping that it works next month when I try again.
Joan-where my Paul goes is a mix of people with various conditions only a couple with Ad-we too call it the Center. When I left him the first time- I sat in the car and cried,I was ashamed that I NEEDED to have help caring for MY own husband. I felt like I was deserting him and I was afraid he would resent me for it. But to my surprise he did ok without me for those few hours. And he was happy to see me when I returned. He goes only a couple days a week but he has grown very comfortable with the staff and I have gotten over all the guilt I had because I know he is OK and they will take good care of him. Good luck with Sid.
Hi Joan. I hope that the activities will take with your husband. I'm getting there myself. My wife loves people so much and had no concept of her Alz. I envision she might enjoy the company after so much of our somewhat silent routine.
I'd like to ask this: My BJ is showing rather significant mental changes in short periods of time. I see regular changes every few weeks. There seems to be no plateaus. The doctor suggest that the fast changes signal a propensity to decline faster than normal in the world of ALZ. Any experience with this?
soolow many here have seen very rapid declines in their spouses. some recoup later to where they were prior the event some dont. i dont think the drs know enough about the progression of the particular area of the brain thats affected to know how each individual will be affected. if the disease say, advances to the core or central part of the brain that controls the autonomic processes (breathing, digesting, heartbeats, swallowing, blinking, etc) then things can move very quickly. we just have to try to be ready (whatever that means) and know that nothing is written in stone as far as how often these changes can happen or how quickly. i have seen plateaus happen even as late as stage 7. we know they can linger in certain stages a very long time. but we also know some will advance more quickly. it can be related to the certain type of dementia they have been diagnosed with as well. ftd i think we have seen advances much more quickly than AD or a variant like lewy body or vascular dementia.but then we also know every AD person is very particular.
It's hard but it's important. I've had my wife going once a week for a year now and three times in the last three months I've had her in for a week (4, 4, and 7 days). I still find it hard but not the shock of the first times because others seem so much worse than my wife and almost everyone is older (we have EOAD and my wife just turned 60).
It's important because it's part of the transition, we learn things from the experience (I was glad to get my wife back even though I also enjoyed my time). In other words I was both more willing now and more aware of what it will feel like later.
All of it is awful. There's no way around that. I hope Sid adjusts ok because that's the first priority. But I also hope you do too. That took me some time.
Joan, my DH started out 3 days a week, but because of a "wandering" incident, he now goes 5. We call it "The Club" to make him feel better, but it is what it is. I chose to let the bus pick him up and drop him off everday, because the thought of taking him there, especially at first, was devistating for me. Emotions were all over the place. I didn't think he was bad enough to be there, but fact is fact and he is. I know in my heart it's the only thing that keeps him safe during the day, and when he was first diagnosed, his Neurologist told me my job now was to keep him safe and happy. The facility he goes to is partially funded by the VA, so there are other vets there for him to re-live his Viet Nam experiences with, and the vets go on a field trip on Tuesdays. It was a big, emotional adjustment for me, he just gets on the bus every day. He has good days and bad days there, but he generally doesn't seem to mind. When I speak with his Social Worker, she says a participates (to the best of his ability) in most activities, and seems to like being there. He has tried to "escape" a few times, but because of his "wandering" issues, they keep a close eye on him. The other side of it is....respite! That's always a good thing. I hope it works out for you and Sid, just stick with it. It does get easier!
I have not posted for ages but decided to have a quick look and saw your post, Joan. Maybe by now Sid has started the day programme. I wish my husband were still there. It was wonderful for him and I don't think you should worry too much about him fitting in. The staff will be wonderful and there will always be someone to whom Sid can relate. It will take time for both of you to adjust but it will happen. You will have a little more time in the "normal" world which will help you to cope with what lies ahead. I was very upset when the time came that my husband could no longer attend and had to go into long term care. It has been a roller coaster 7 months with him declining severely in recent weeks. My mom was in and out of hospital at the same time and passed away on December 2nd. I feel guilty for neglecting my husband while needing to be with my mom every day. I will try to make up for that now but I'm finding it exremely depressing to see him decline like this. I'm sorry I strayed from the thread you started but wanted to tell you why I have been absent for so long. All the best to you in this new venture for both of you, Joan.
So sorry, Inge. Losing your mother and having to take care of your husband must have been hard. Please do not feel guilty. Just be glad you could be there for her. Sending prayers your way for some sunshine in your life.
It was good to hear from you again, Inge. My sympathies to you on the great loss of your mother. I'm sorry that your DH is declining rapidly. I'll add you both to my prayers.
Well, I managed to screw this one up for the time being. When Sid and I arrived at the "Activities Center" this morning, I was told that I was supposed to have made an "intake" appointment. That's a one and a half hour paperwork ordeal. AFTER that paperwork goes to the head office, THEN Sid can start. However, he can participate in the activities while I'm filling out the paperwork. Between one thing and another on my schedule next week, including doctor apts. for both Sid and my father, I couldn't make the apt. until next Thursday.
The good part of all this is that Sid got to see the place and talk to the woman in charge. He was okay with it, and said he was willing to "give it a try". Also, I had told him that his neurologist (whom he adores and does whatever he tells him to do) put in the order for him to go to the Activities Center. At the last neuro apt., the doctor was very concerned about Sid's decline, and he wants him to engage in as many brain, body, and social activities as possible, so he did fax over Sid's records and the okay, but he didn't actually "order" it. Little fiblet on my part.
At this rate, because of the holidays, he probably won't start until the first week in January. That's okay with me as long as he goes.
I hope all goes well when he starts in Jan. I know you must be so upset by the setback. I do wish you well with this. Fingers crossed that he wants to go, and enjoys his days there.
Joan- for what is it worth my DH truly believes he is working there at the "Adult Day Center" he thinks he is the go to guy, like he was at the hardware store. He does not know that it is a Day Care, for some reason he thinks it is a store of some type.So that part is actually a blessing.(and quite humorous) But in our case he had been in a nursing home for a month and a half, they would not release him to me if I did not have 24 hour supervision lined up. He wanted out of the nursing home so bad, I told him this place was the only way. The being was very rough, he was angry and kept asking how long he had to keep going there. That was in April and now he looks forward to going everyday to "work" of course he has no memory of the nursing home now, but that was much, much harder than the day care, he was left with next to nothing to do there. Thank goodness I was able to get him qualified for medicaid otherwise I would not be able to work to support the household.
A good daycare program will tap into the work experience of the client when setting up activities. My husband was a CPA, so the activities person would sit him with her at a desk when she was doing paperwork and ask for his "help". Even giving out the songsheets during music activities was a little job that put him in touch with paperwork.
With other people who were used to using their hands for a living, they would offer jobs like sweeping the floor. Women who had been homemakers did simple cooking-related chores.
When attending his first daycare (when he was early stage),he would come home and say "these people don't know how to run a business". He was reverting back to his accounting days, when he would go into businesses and make suggestions for improvement. I think I have mentioned this before--apparently he was right, this particular daycare went out of business!
No expierence with day care but the first few times I visited LO at ALF the very hardest was when I'd leave an she was standing in the door crying because she come with me,I'll remember that til I pass(if I'm lucky I guess)
ol don--Did you ever try telling her you are going to the bathroom, instead of going home? That's what I always say, and hope that in a few minutes he will forget that I was there.
now it doesn't matter anymore,but I did that for months,anything to get up an walk away,the first few months were alot harder,now sometimes she thinks I'm her dad,so sad to watch them go downhill