Things are changing in our house again. Ray has gone from occassional incontinence to frequent incontinence in a matter of weeks. There has been no change of medication, no change of diet or illness to indicate why this has happened. I told the doctor what was happening and he rolled his eyes. He is reluctant to talk about these issues in front of Ray so I will have to make an appointment to go and see him by myself. That will be another way of "losing" my free time - using it to visit the doctor on his behalf.
I am a strong woman. I have been an independent, working woman, I have been a mother of three, a homemaker, decison maker, community worker, sometimes all at once. But now I feel as if I am slipping away from the community back into the home as Ray's conditions make more work for me looking after him and I get more and more tired and stressed.
Last night we went to our Lions Club dinner, there were the usual reports and a dilemma, our club had been offerd two barbecues to do on the one day. One of our older members stood up and harangued the meeting: "Look at you all, sitting here eating, where are you when there is work to do?...etc , etc. I know Ray and I can't do much now so I wonder if I should still be a part of an organisation I can no longer work and be active in? I'll pay our fees up to the end of the year and then make the decision and hand in our resignations. It is not something I want to do, it is something I have to do.
Ray has also begun to have vomitting attacks, nothing major so far, just coughing up the last meal, choking on something crumbly, things like that. Again no real reason, just not handling eating in the same way as before. This is exacerbated by the fact that he hoards food and eats it in the bedroom. This is mostly food he has pocketted from the sweets dishes at Daycare. This morning I found a coughed up chocolate bar under the bed in an old icecream container put there for emergencies. I am presuming he did that yesterday afternoon when he went in for his nap. Hiding food is one of the features of dementia.
While I was hosting chat this morning I heard a rattling in the kitchen and Ray was spilling a bottle of fizzy drink, luckily in the sink, as he was trying to fill a glass. It was a drink belonging to our son, not the diet drink which is always available for Ray. I am sure he knows the difference but maybe the dementia is clouding those issues too and the nearest bottle rather than the appropriate bottle is what he wants. He also took his night tablets at lunchtime instead of his lunchtime tablets which I had put on the table for him. He had the other container in in his pocket! My fault as I often keep them on top of a cabinet near the dining table, I guess I will find another place for them now.
This is not a litany of Ray's faults and failings, it is a list of the things that are altering and changing the way I will have to function in relationship to him. I will now have to go through his pockets on the night of the Daycare session so I can remove whatever he has brought home. I have tried asking them not to give out sweets as prizes for "Bingo" etc but they don't want to do that for the sake of the others who can still enjoy sugary treats. I understand that but it does make life harder for me. I hate rifling through his pockets, it is against all those "privacy issues" laws I was taught when I worked as a pubic servant.
Ray is taking up more of my time with doing laundry, cleaning etc. I am preparing foods more carefully and socialising, eating out, getting takeway etc seems less usual. I guess I would seem to be whingeing if I told my friends that going to an afternoon tea for a 90 year old is less fascinating and fulfilling than holidaying in Vanuatu or going on a Mediterranean cruise as they are? What did I do in a past life to be living the life I am now...I want to cry, scream, tear out my hair, cover myself with ashes. In other words I am once again mourning what might have been and not really enjoying life as I am living it now.
In the old Testament, the Jewish part of the Bible there are a lot of psalms which I read over and over all about how the Lord resues us from the trouble and strife of life. I hear on tv shows how people respond to a crisis by yelling: "God help me" and in their excitement at a piece of great news will say"Oh my G-d" over and over as a means of expressing surprise and gratitude. And yet in my times of crisis I just don't know who to call out to, feeling in a way it belittles the God I believe in to call on him in this way. Where is my protector, comforter etc? That was once Ray, the person I am usually cleaning up after or hauling up off the ground. I dare not call out: "Mother" as some do having in my mind the mindless little old woman I visit on Mondays and Fridays. It is pitiful to think of her as my helper.
For the caregiver there is often no-one to call on, no-one to come to her aid. It can be a very lonely existence.