Agonizing over the first decision that will begin the separation of our lives...Is it time for Day Care? DD brought up the subject to me.
She has been exploring programs and found one to visit next week. Whenever subject was brought up, I have quickly said "No, not now". Well , the children think it is too much for me . They all work and do play a part but have families and jobs. So, this time I just listened and agreed they could gather info.
Since the talk, I am feeling very overwhelmed with all the ramifications....Guilt, Sadness, Indecision, Financial Concerns.. I don't even know how I would get him to go. They suggest telling him it is a job.
Can anyone relate to this? I need some help from others who have been on this path.
I know what you are going through, as do many of our members. It's a difficult decision, and one that works out differently for everyone. In my case, I was lucky. When Sid was no longer able to participate in his usual activities, and he mostly sat in his chair and slept all day, I knew it was time. Since he is the social type, when I told him that I was looking for more "activities and socialization" for him, he didn't complain. It worked out extremely well for us until I was no longer able to care for him at home.
If you go to the top of this page, and type in "day care" in the search feature, making sure "topic" is filled in, a lot of day care topics will come up. Some of them have good tips for getting them to go. Usually, "volunteering" or "working" works, depending upon your husband's likes and dislikes and personality.
Also, please check out these blogs for my experiences:
I have been trying daycare for my DH. I've told him it is for exercise. Also have used job scenario. I have just been taking him intermittently, whenever I need a break, about I x wk. He does ok, and doesn't even remember being there.. I plan to step it up a bit. I took him about a year ago and he hated it, but things have changed. Hope it works for you, God bless.
I tried daycare twice and it turned out to be a hassle. The first time he hated it and it was a job getting him there and picking him up. The second time he did not participate in anything and just sat there and I realized he really does not care if he goes or not--that it was really my problem in trying to get some relief from the caretaking. Then I tried the local community senior center. I got him involved in what they call a special elders program which provided more assistance and support. I would take him for lunch and he would stay and watch the men play pool and then I would pick him up. that lasted quite a while until he wandered into the women's rest room and did not know where he was. they called me and said that he had declined. I realized it was not their job to watch him as these were normal seniors and not seniors with Alzheimer's disease. By that time I had him on a wait list at the ALF and placed him in August. I never really had the problem of him not wanting to do something. He was always compliant and still is with whatever. In addition to daycare, I would suggest respite. The counselor at the Alz Association told me if you put them in respite, put them in more than a day or 2 so you can get an honest to goodness rest. At first I left him only for weekends and then last summer left him for 5 days. For me leaving him has been a gradual thing--letting go little by little. They may express resistance but the caregiver must not take it personally. You are doing what is best for both of you. We have to take care of outselves and that is sometimes the hardest thing to do. My best to you as you continue your journey.
I told my DH it was a place where people who don't drive anymore can go and socialize. He has made friends there. They keep them busy with activities and it's so much better than him sitting in a chair and watching TV all day. The time he is there is so valuable to me. I shop, do laundry, clean house, have lunch with friends and get some much needed "me time".
Lorrie, your approach to Day Care is going to depend a lot on what kind of relationship you have with your DH.
We tried Day Care a year ago, and my DH hated it - he felt he was the youngest one there, and thought the activities were for "old people". He wasn't the youngest, but I wasn't going to argue with him. He is also not terribly social. I didn't push it when after 5 weeks of one day a week Day care, he gave it up and said he wasn't going back. I had enjoyed the hours I had at home when I could get some real housework done without him being underfoot, but this journey is not about me, its about us. And in retrospect, I realize he probably was too mentally "with it" at that point anyway.
Then, this summer, I was dealing with some health issues of my own and showing obvious signs of stress. I let hubby know that I needed to learn to deal with my stress, because the healthier I stayed, the longer I could keep looking after him at home. So he decided to give the Day Center another go. I know its not his favorite place to be, but I think as his disease progresses, and as he becomes more familiar with everyone there, he is feeling more comfortable in the Day Center setting. And I get five or six hours to myself one day a week, at home, when I can do the things that need to get done, or that I want to do.
So, I think that the Day care might be worth a try - your children are right, you do need a break, even if you don't think that it is too much for you right now. Your children see what you can't, because you are too close to the problem. If you have your DH try it, and it doesn't work, then at least you know that, for now, that is not a solution.
Thank you all for your responses. I am so relieved to hear from you..who understand.
I still feel it may not be right at this time. We do have plenty to do.. So he isn't bored. I feel guilty to say but, I am just worn out from the emotional toll of day to day caregiving. He wants to be with me all the time. We did spend a lot of time together before his dx, as we both retired at 55. But, I still miss the freedom to get out by myself now.
I guess it doesn't hurt to look into but just the thought is causing me turmoil.
If your guy does not fight it, and there is a possibility that he may like it, I would say go for it. It sounds like you need some time to just get out and about. When I had that one day a week in home care, it was a literal life line to me and oh how I remember how I looked forward to that time.
Funny how we feel guilty though. If I could say Lorrie, when I look back at those times, in my mind frame now I would have had NO GUILT at all and now I know how important it was to have had that time. Love to you.
Lorrie, with a lot of trepidation, I signed my DH up to attend Day Program when he was in early stages and he hated it. Then I tried a year later, when he could not be left alone anymore and was truly bored. I told him that it was a retiree's club. They had a lot of music and engagement between staff and attendees and he loved it. In fact, he ended up thinking he ran the place! As others have told you, it's very important for you to get a little 'timeout' once in a while. And I agree with Coco. NO GUILT. Needing some alone time is nothing to feel guilty about. Good luck!
Sometimes you need to do things out of self-preservation and there should be no guilt when this happens. When I first placed Clare in day care one day a week (which would eventually grow to 3x, then 4 x/week before I placed her in an ALF 3 months ago), I did so mostly because I simply needed some respite time or I would have exploded. All Clare would do was watch TV, and want me sitting next to her the whole time, and we'd watch the same shows over and over, and she would ask me the same questions, over and over. I needed some respite time ... and time to do our food shopping and other errands that, when taking Clare with me, became impossible to do easily. Clare didn't want to go to day care ... but she went, and most days actually had good time!
So grateful to find help here this morning . It's Soo hard to find that balance between self-preservation (as acvann states) and caregiving. I am struggling with that now.
I get stuck in my thinking and cannot carry on with my day. I have so much to do and I will try to take this one step at a time. Tomorrow Dd will go to see program.
Lorrie I am one of the oldtimer veterans who wholeheartedly admits to waiting WAYYYY too long to get in extra help for respite. we think we can do it every day 24/7. not possible in a very short while we get burned out ailing ourselves and mentally in a deep abyss sometimes unable to crawl out and just hang on the sides hoping for reprieve. now I take advantage of when I can to get out and know I have done my best and that others are able to care for DH while I take time for myself. it wasn't easy to get here. yes guilt plays a huge part but that will be with us just because its them and unable to be cured. we will always feel some remorse over this disease whatever the reasons. get him into daycare as soon as possible. and stay your course. soon they adjust. we see it here all the time.. persistence and patience. divvi
Thank you divvi for your advice. I needed to hear it. I do feel like I am burnt out. I understand why so many wait till there is no having to make the decision...it is wAY too late. Making the decision brings the guilt and sadness at this next step .
I am going to try to keep an open mind. Although, I can't even imagine getting him there.
Lorrie, try not to stress about how you are going to get your LO to go to Day care. I didn't think I would ever get my DH into respite care while I was incapacitated because of surgery. I worried about it for weeks, and even came up with alternate plans in case I couldn't get him to go. In the end, he went willingly, and I did all that stressing for nothing.
"Worrying about tomorrow only takes away the peace from today"
Your words are so helpful, bqd. I am trying not to worry about it. I don't think this is the time yet. He still enjoys being with me or family and friends. But, it is a good idea to have options in place. So, I haven't said anything to Dd who will visit Day Care tomorrow to get info.
I am so grateful for you and others from distant places who can share and care. Although, I wish we were close And could meet for tea and chat. Wouldn't that be nice.
Yes, Lorrie, that would be delightful! I don't know where you live, but count me in whenever & wherever! :D D. is not ready for daycare at this point, & I can still leave him alone for a few hours (3-4) if I need time for myself, but when the time comes, it will be traumatic. He's a very stubborn, prideful man (misplaced pride, I think - whole other story). It will NOT go well for us, I'm sure - unless, by some miracle he becomes compliant! I try not to think too far ahead, it may never come to pass, but I know I should be looking into things & gathering information. Hopefully after January comes, I'll find some motivation to do so.
Mim I am in New York City. Tomorrow, I am going to support group in NYC chapter office specifically for spouses. I am hoping to meet others like you in person.
I can no longer leave my DH alone since the summer. He doesn't know our address, phone number and emergency info. He can't use a phone and has speech and language problems . That is why the daycare decision has come up. Daughter visited to speak to Director yesterday. Two daughters think we should visit program in progress next. We are only thinking of two days a week 9-3 but we all know it is a big downward step and hard to accept.
Lorrie -- here is my take on the daycare dilemma. I looked at daycare initially as a way to preserve whatever functioning abilities my DH still has. I began to send him one day per week in April, 2012. At that point, I could still leave him alone at home, but I felt he could use some additional socialization. The first time we visited the program he was adamant about not attending and I was very disappointed. Then about three months later the day program hosted an open house and I went with him and visited for about three hours including lunch. He was more agreeable to attending after that. He continued to attend once per week until this June, when I increased it to two days. He was walking repeatedly in our neighborhood, walked into a neighbor's home uninvited and I felt he needed more activity to keep him occupied. The walking continued through the summer and I had to accompany him (7-8 times per day) every time and it was wearing me out. I decided to increase the days to 5 times per week. I view this as structure for him and respite for me. I was feeling very worn out and really wanted to go away for a few days, but I just didn't feel comfortable leaving him in respite overnight. Unfortunately the day care is not cheap and I'll probably run out of money by this summer, but I'm pursuing other avenues for funding. I think another way of looking at it is that if he didn't have this disease, I would still want us to each have our private time. 24/7 togetherness just would be too much for me. I hope you find a program that meets your needs and is the best for your DH.
Elaine K Your thoughts provide another way to think about it. If I believe it is helpful to him and he likes it , then I would be comfortable with it. Yes, we do each need some separate time. We always did before dx.
Elaine, Is your husband a vet? If so, contact your local VA hospital for a social worker and see if he is eligible for benefits. The VA pays for my husband's day care, 3 days a week. The day care does need to have a contract with the VA. You can also check with the state's Department of Aging.
Deb, no my husband is not a vet. It is always the first question I am asked when seeking out any type of funding. I have an appointment to look into other funding after the first of the year.