Okay, here's the short version. I'm not sure if this is a legitimate complaint or a sign of burnout, but I imagine that at least some of you can relate to my situation and will be able to understand where I am coming from.
I live with my great-grandmother-in-law (93 with vascular dementia) and I am rapidly running out of patience with her. She is a cranky, miserable old woman and absolutely no amount of effort will make her happy for any real length of time. You could take her out for the best day of her life, and she would turn around and forget the whole thing in a matter of minutes upon her return and go back to being miserable the second that you turned your attention away from her. Sadly, this is the nature of the disease, so I can't very well get mad; I knew this was how it would be and I'm learning to live with her constant negativity.
My question is... how much effort should I realistically bother putting in if it all goes unappreciated anyway? If this woman is going to be unhappy no matter what I do, what incentive do I really have to put a lot of time and energy into pleasing her? It has recently occurred to me that I have been putting way too much work into pleasing her so far - is that horrible of me to say? Can anyone relate to feeling like this?
Her memory is so far gone that almost every good deed is forgotten in an instant, and elaborate dinners and a bowl of cereal are met with the same indifference. It really makes it hard for me to want to put much special effort into her care. Do I sound like a horrible person for wanting to try less and take some of my time & energy back for myself, or is it normal to feel this way when dealing with someone who has AD/dementia? Please tell me I'm not alone here - I feel like I must be a horrible person for thinking like this. How do you strike a balance when dealing with people with memory problems?
I was moaning about how badly I felt not doing some of the extra things I like to do for my Mom because I just haven't had as much extra time, lately. The group leader (social worker) asked me to think of what I would have said to a friend who had just said the exact same thing to me. I thought about it and replied that I would have brushed it off and told the friend not to worry about it - if you're doing so much, why are you feeling bad in those times when you can't make time for extra.
She said, "You have to be a friend to yourself. Be your best friend." I could see light bulbs going on over most of our heads.
I agree with looloo - this is a marathon and not a sprint, so pace yourself. You must be a pretty special person to be caring for your great grandmother in-law! So whatever happens and however she reacts, know that you've done more than your fair share.
We are at the stage where she is only interested in bodily functions. Her three sentences are:
It's cold in here
I want a cookie
I gotta poop
That's what she cares about and I can't entertain her.
Hospice is a big help.
They send the following:
aide to bathe her in bed 3x week
massage therapist 1x month
music therapist 1x month
chaplain 1x month
nurse 2x month
I have had hospice for seven months and am grateful for them.
Does she appreciate all those people coming in? No. She doesn't care at all and doesn't remember they were ever here. During their "sessions" she ignores them.
Being in the room with her is awkward for everybody....especially family. Because she will not interact at all.
Sometimes, I remind myself that I'm getting too caught-up in trying to make her happy. I remind myself that I'm keeping her comfortable and as well as she can be and that that's all I can do.
But it's a hard thing. On Mom's really bad days, I'll admit I sometimes hide from her. I know the mood swings and such aren't really her fault, but I sometimes just have to hide for a bit. During those occasional times when she says nasty things about me, I try to overlook it but I can only do that, once in awhile. When she gets in a truly nasty mood toward me for an entire evening, for example, I have to get a break from that. I don't think I'll ever really get used to it to just ignore it, though.
It doesn't make us horrible, just human.