Experiences of this kind are soul-destroying - exactly the type of thing I was referring to earlier about losing your identity. In fact, my Retail Banker who has been through a similar situation (for a shorter period of time) told me it was months and months after her mother passed on before she shook off the feeling of being hounded when she went shopping.
There is never time to browse, never time to window-shop, never time really for a chat with friends - if one still has any. I bumped into a friend one day on the pavement about 15 feet from my mother's side of the car and in full view of her. This person is an elderly artist who has always supported me with my art, and I hadn't seen her for a couple of years. We stopped to talk and literally in about one minute flat my mother was rapping on her window and waving out to me that she needed attention. I maybe don't have to tell you how angry I was.
It's amazing what we do by way of compromising for the sake of peace. Some time ago, probably in 1999-2000, the same lady invited me to go visit an artist friend of hers - who would have been well worth visitng - and asked me if I would take her in my car. I would really have liked to go, but when I told my mom about the invitation, I got another of those flat, abrupt responses: "Why should you take her out when you could take me?"
The truth of the matter was that at that stage I always took her with me wherever I went and hadn't been out on my own anywhere for years. So I gnashed my teeth. Wisely or not I stayed home as I didn't have anywhere I could readily leave her in those days - If this were to happen now I could probably arrange for her to go into care for the day, although my allowance of Carer Support isn't a bottomless pit.
We don't always see our own situation. Not long ago, a nurse I know who works at the hospital commented, "You are a prisoner in your own home!" It's funny how sometimes our friends can be quite bald about putting out their thoughts. This statement pulled me up with a round turn - I had never quite thought of it in such extreme terms, but in a way she was right and the comment left me feeling miserable for several days. I always regard the Internet as my window on the world and in many ways it is, but that comment left me feeling it was inadequate. It took some mental work to get my equilibrium back again.
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alzheimers, alzheimers care, dementia, caregiver, alzheimers disease
2 comments:
Patricia--When I read this I recalled the difficulty I have when I DO have any free time. I sometimes think: "What's the point of an afternoon off? I'd need a couple of years off, just to regain my life!" So maybe it's a good thing that we aren't always aware of our situations, and it certainly IS a good thing that we can connect with each other, despite the utter loneliness of caregiving. There WILL come a time when we can put this into perspective--when we will write about or paint it from a more objective standpoint and then we'll understand what we don't completely see at the moment. I believe this.
Deb
Hello Deb
I can't say how much it means to make contact with people like you who are in similar situations. This is an extremely hard row to hoe, and anyone who thinks it is not just has never been here.
It's more than just the restricted activity, I find - and I'll be talking more about this later. There's a whole raft of mental and spiritual issues in this too.
I've just had a week off - in fact I stretched it into 10 days - and it just was not long enough!
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