They live in the independent living section of a retirement home about 25 minutes away from me. My father's abilities have declined significantly in recent months. His latest score on the cognitive assessment test given by their doctor was 14/30. Less than a year ago it was 26/30. The doctor suspects vascular dementia in addition to Alzheimer's type dementia. My father is 78. He goes for a walk early every morning, works out on an exercise bike daily and has always been fit. He is friendly, loves to greet people, used to work in management. He and my mother have been married 55 years - an ofttimes stormy relationship but they do care for each other very much.
My mother is getting very worn down with trying to manage him herself. While she doesn't need to cook or do housekeeping, he depends heavily on her for all kinds of other things and badgers her incessantly at times. She struggles with worries and anxiety even in the best of times. Some things have happened recently that have made her acknowledge that she needs help. He needs more stimulating activities to keep him busy. And she simply does not have the energy to do all that herself. He has bad days when his frustration is difficult for her to cope with, and I am concerned that between her frailty and his strength (and temper) that he may physically harm her. It has all come to the point that she is considering the daycare program at their retirement home for him.
The problem is - today my mother and I talked together with some of the staff at their retirement home. They were very kind. Very compassionate. Very understanding of the difficult situation she is in and that she needs some help. Come to find out, the daycare program there is free. She did not know that and neither did I. That was wonderful news, because my father objects to paying for anything "extra". My mother was teary - this is a very, very hard thing for her to do. She worries about how my father will take this, etc. But in the end, I think we both felt reassured by the description of the daycare program offered.
We went on a little tour of the secure section for memory impaired residents after our meeting and had a look around. It was depressing. And this was the area for "high functioning" residents. I just can't picture my father there. He is confused at times, it is true. But he is so much more "there" than those folks were. Spending time over there on a regular basis would send him downhill even faster, I'm afraid. If I can't imagine sending him over there, my mother must be absolutely torn up over this. She already worries about abandoning him, of packing him off over there, of how he will feel. And to be truthful, after SEEING it today, I really do too.
The idea was that she would go back to their place and start talking positively about it with my father. At his next doctor visit the doctor would tell him that this would be a good thing for him (he likes his doctor very much - he protested when his driver's license was taken away last week, but he acknowledged that the doctor knows what is best) But it looks so much more institutional than the lovely place they are now. (My father knows about this section for memory impaired residents and he has no intention of going there). Lots of people were just sitting around ... and not doing a whole lot. The activities are things like singing, cooking, all sorts of things, popcorn and movie, all lined out on a monthly calendar. But he doesn't really like to do stuff like that. And most of the residents are very elderly women. The prospect of him having to go over there seems absolutely demeaning for what he is able to do now. There's no way to disguise it for what it is - a way to keep him away from my mother for awhile.
I'll call my mother tomorrow and we'll talk about this some more. She was exhausted after all the meetings today and we didn't talk much afterwards. She just sobbed as I hugged her before we went back into their room so I could say goodbye to my father. He wanted to know about the meeting - he has some idea that it is regarding him.
This decision would be difficult enough if we both felt GOOD about where my father would be spending his time. But I don't. And I'm thinking that it surely must have hit my mother the same way.
Any words of wisdom or advice? I am so torn on how to advise her. I don't want to stir up more doubt and guilt than she is already dealing with. I thought this was a very good step - finally acknowledging that she needed some help. I'm just not sure what to do right now.
An adult day program can be an extremely good way for the caregiver to get some relief. And it can also be stimulating for the loved one. But not all programs are extremely good or appropriate for an individual. My husband has been in 3 and the third one (which he is in now) is far superior to the other two. Even so, he complains that he is less impaired than most of the other members and is bored a lot. This program allows him to use the "quite room" to sit and read and not participate in the sing-alongs (which he hates) or the batting balloons around.
Most of the participants are very elderly women -- but are there any men nearer his age and level? He doesn't need a whole room full of people, and if he hits it off with just one guy to do a jigsaw puzzle with or argue over football teams with, that could make a big difference.
Because this would be so good for your mother, I think it is worth a closer look. If he doesn't like the activities on the calendar, what could he do instead? Does he play cards? Ask if there is anyone else there who might play cards with him during activities he doesn't like.
A man who gets exercise every day will be insulted by what passes as exercise for people with more impairments. But if they can let him use weights and do a somewhat more vigorous version of what most of the group is doing that would help. How willing is the staff to individualize the program for a more highly functioning adult?
Do they have both a "memory care" and a "regular" version of the day program? Although my husband has dementia, he is in with the regular program, because he is so much more "with it" than the memory care folks. Sounds like that would be better for your dad, too.
How many hours/day, days/week were you considering? If there are some things that would appeal to your dad more than others, pick the days accordingly. For example, on Mondays my husband's program has "book club" where one of the staff reads a chapter of a book to those who want to listen, and he really likes that, so Mondays are good choice for him.
Now that you have absorbed the shock of considering an institutional program for your dad, I suggest you grit your teeth and go back and check it out more carefully.
Many people present it as a "club" their loved one is going to join. With my husband I frankly acknowledge that he is going for my sake. I need some time I can count on him being cared for in a safe environment, so I can schedule my appointments, meet with friends, etc. Do you think your dad would accept that he needs to do this for your mother's sake? Can you talk to him privately, say that you are worried about her and how much she worries about him. She needs some time to herself, etc. I don't know your dad, and you'd have to think that one through based on your knowledge.
If further exploration makes it seem at all possible, then please try it for a few weeks before rejecting it. Your mother's needs must be considered, too.
If there doesn't seem to be any way this could be made acceptable, or if you try it and it isn't working out, please try to meet your mother's needs in some other way. Can they afford to hire a PCA who could take Dad on "field trips" once a week? Or who could stay with Dad while Mother goes on little outings?
Your dad may be the one with the diagnosis, but both of your parents have needs. I certainly hope you can help both of them get their needs met. Bless you for trying!
I don't understand your concern about the free aspect of this. Yes, it is certainly true that your father may eventually need more daily care than your mother can provide for him in an independent living setting. And more care is more expensive. But attending the day program (and we do NOT refer to it as daycare, just as incontinent supplies are not diapers) will not hasten the need for those services. In fact, it is possible that by giving your mother a break and your father some stimulation, it could actually defer the need for full time placement, at least a little.
You are doing your best for them. They still want to retain as much independence as they can. Don't take it personally if you work very hard at something and they seem to brush it off. Just come back at it another time.
Good luck to you all!
You are so right in saying that while my father has the diagnosis, my mother has needs too. Perhaps this program IS worth a second look, and I appreciated some of the things you mentioned that could be positive there for my father.
Another thing that concerned me yesterday was that it is free. Daycare is absolutely free for all residents of their retirement home. Neither my mother nor I realized that. Looking at it purely from a business standpoint, I think their retirement home has nothing to lose and everything to gain from offering this as a free service. Once a resident begins attending there, their needs will only increase over time - and the cost is very high once they are required to eventually move in. I did not mention my thoughts to my mother, but I was uncomfortable with this.
She was very uncharacteristically happy on the phone this morning. My father was right there so she was not able to talk freely, but I did ask her how she felt about the little memory-care tour we had yesterday. "Were you encouraged about Dad being there?" I asked. She laughed and said, "Not really!" I suspect that she is gearing herself up for another round of trying harder to make things work for them both. In fact, they discussing whether to go out to the store this morning or this afternoon when I called. Honestly, you could have knocked me over with a feather, I was so surprised by this. Her health is poor, and she is tired in the best of times. Yesterday she was exhausted and spent. I even felt a little privately annoyed at having tormented myself with all this stuff last night and this morning. I'm a sandwich generation woman - heading off to my daughter's for the day to help with her 5-month-old twins.
There are so many angles to all of this. Trying not to feel crazier than I already do with it all!