All right mother.

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Let’s seek another solution. Together we visited the only locally available option to give Me a chance at relieving Me for 5 – 6 hours once or twice a week of your care. You said you would try but seeing the other seniors at the facility who looked blankly at us and didn’t respond when greeted I can’t imagine ever letting you go there.

So tomorrow we will seek another option that will require me to further dedicate more of my life to making your world a better place.

I am sorry, oh so sorry, that you are stuck with me. I wish the family members who you value for the momentary joy they give you when they grace us with their time once or twice a month would commit to the minute by minute care of your needs at least one day a week.

But alas their needs come first … leaving us to find our own way.

I question my ability to be of sound my mind long enough for you or myself. I wish you had someone else.

But we are lucky … I think … we are not so bad that an agency will put us in an institution against our will. And so, I need to find a way to make the long long days better. I just wish ………….

7 Comments

You absolutely NEED respite. No one can be a caregiver to someone with dementia 24/7/365 and retain their sanity. Ain't possible. It would be awesome if other family members took responsibility for Mom regularly, but it doesn't sound like that is likely to happen. So what other options are there?

Adult day-care places. It sounds like that is what you visited. Sounds bleak. But were there other higher-functioning seniors there also? What kind of activities did they have? The place my husband attended had a few non-responsive persons and they were well cared for, but the activities were geared to those who could be more active and interact with each other. Be sure you are viewing the entire facility and not judging on a few people.

When my husband needed more individual attention than the daycare could provide he stayed home and we had a PCA come in several hours each day. He loved that! -- and so did I. I was supporting us by working from home and I had to have some uninterrupted time.

Another option, of course, is a care facility. But if you want to avoid that or put it off as long as possible you HAVE to preserve your sanity by arranging regular respite.
Hang in there turner, it's a long road but rewarding. There always has to be the "one" that does it, sounds like it's you. Don't waste your time lamenting about the ones who only show up occasionally, it's not worth the effort. Just know that in the end you did everything you could do to make her comfortable and content. This website has some wonderful threads full of humor and venting and ideas. Welcome to the club!
I didn't get round to trying this, so it's only a tentative suggestion; but how about going with your mother to the local place for a few trial sessions and seeing if it doesn't look less bleak once you've got over the initial shock and heartsink of it.

You reminded me of a place near us that we did visit, on our lovely GP's recommendation. The other residents bothered the heck out of me to start with, but I have to admit that mother didn't turn a hair. Also, on reflection I realised that the presence of a bed-bound resident - on her hospital bed, in one of the lounges - while it might have made me jump out of my skin, meant that this was not a place where disabled people were kept out of sight in their rooms so as not to embarrass anybody. Which was a good thing.

Events overtook us and I didn't take mother back there. But I sometimes wish I'd thought about it earlier.

At the very least, this will bring you the respite of being in company with other people who really do know and understand dementia. Don't be alone, don't give up, and don't waste emotional energy on [delete description of the kind of family members you mention because it uses offensive language].
I am not sure how this site works or where this post will show up. I just want to thank you all including a lady that gave me a hug but I don't see her post here.

I like the suggestion of attending with her the first couple of times and will explore that option. I want so much to improve the quality of her life and to preserve mine. It's a big step for me to take. I have been caring for her alone for over 5 years now and as she declined I watched her lose all her friends and I lost mine almost as fast. I watch my brother and niece deal with her confusion by saying "oh you're okay, Janice will help you." and then walk away.

I just don't want to put her in a situation that will scare her; I am hoping more interaction with others will help her. We live on an island and this is the only daycare facility readily available to us. Long term care when she needs it will mean we have to move as there is none on this island and I won't send her someplace where I can't visit. Just trying to work this all out.

Thank you for listening. It Helps!

Hugs to all.
turner, I can understand you wanting Mom to be some place where she isn't scared. I know when Dad moved to senior living, I finally learned how young parents feel sending their child to school or college for the first time.

At first everything was new for Dad, but he didn't move in right away as his apartment was ready, but his caregiver would take him to the facility for "social hour" so he could get familiar with the faces, and going in and out of the building. Thus, once he moved in he was comfortable.

My sig other didn't like visiting any place where there were patients sitting in wheelchairs looking un-involved with the world. But I found it very interesting watching how other dementia patients were interacting with each other. Those who were more clear minded were helping those who weren't. It was like a private society that only they understood.
Turner can you share with us roughly what part of the world you are in? You don't have to name names but here are people here from all over the World and someone may be able to offer more helpful suggestions. I doubt you will be able to improve mom's quality of life if she has reached the disinterested stage but you certainly can improve yours if you can get someone to watch her at least one day a week while you get out and relax. Your friends may have all abandoned you which of course is common but joining something that interests you such as a book club will give you some interaction with others, or even volunteer somewhere for a few hours. No one will want to hear a constant recitation of life as a caregiver but feel free to share amusing things she has done that may be funny, otherwise ask about their lives and you will be surprised at what they are willing to share and how helpful you can be to others.
Turner, one thing I learned in dealing with my elderly mom is that we younger, more with it folks don't have the same perception or standards as our elders. When my mom was moving into a rehab facilty after hip surgery I was freaked out at the look of the place. All these pitiful old folks staring off into space. I thought, oh no....She's gonna scream bloody murder to get outta here. Mom never said a word. She didn't like it but she's old too, sometimes stares off into space and these folks were her peers. She fit right in.

The same thing happened when we visited an assisted living place near her home. I was on pins and needles about her seeing all these lonely old ladies but she didn't bat an eye. She liked the place.

Same with the house. If I were living there I'd have to spend $40 grand remodeling the groddy old kitchen and bath. My folks don't mind at all and think I'm nuts to even suggest the slightest facelift.

Keep the conversation going (or start a new one)

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