We’ve had rain the last few days, not heavy rain just the misty-moisty kind. It means that the mornings are much colder and the wind tells us that winter is on it’s way. Summer is now over and I haven’t even been swimming in the sea this year. I hate the thought of winter, especially that feeling of being closed in by the cold and damp. Ray doesn’t have a lot of joy from winter either as the cold affects his stroke damaged side and stiffens his muscles making him slower and more tired. This is inclined to make him say “no” to any suggestions of going out for a while.
What to do when the bad times come again? I thought of that as title for this blog but I feel as if that would tempt fate, as if somehow if I say some of the things I am thinking out loud they will happen. My Mum used to be like that; if a neighbour became sick she would think it was because she didn’t call in to see her on her way past last Thursday! It is as if we think we control the world around us that seemed possible pre-stroke, now it seems ridiculous.
Ray and I just had some bad days, days when he was uncooperative and I was to blame for everything. When I showered him the shower was too hot or too cold, the food was too spicy or I had put too much on his plate. On those days he never says thank you, just gives a nod as I put something in front of him. That is when I feel like a servant and not a wife. We don't at the moment get those days often but a few too many in a row and I am back into the “I AM OUT OF HERE!!” mode. Remember how you used to do that as a young married, slam the door and walk off in a huff? Well I can’t do that now to get rid of a head of steam, Ray is 24 hour care and I am his caregiver.
Fortunately the last two days have been better. My problem is he gets a bit better for a while and I think he will always be that way and then suddenly he changes again and I am devastated. I have to re-learn to go with the flow and to remember not to take it all personally, it is not all about me.
I like to think I am open and honest but do I try to hide Ray's dementia from the rest of society in the hope that we will still be acceptable and not get isolated. It is bad enough that he is in a wheelchair, a kind of half-man. Now with the dementia, he also has problems with thought processes, he is slow to speak and rarely answers questions. Even at Lions we are often isolated on the end of one of the tables. I don't think they mean to be rude, they just want a pleasant evening out talking to friends.
Ray still appears normal to some of our friends. He is quiet, has a warm smile and always says something to indicate he is pleased to see them. He is well liked at Daycare, and doesn’t seem to mind the extra day. Of course he comes home and sleeps the rest of the afternoon away. That is because of the massive fatigue that has dogged him since the major strokes. He just gets very tired and I know that so I usually work around it.
Yesterday after doing the Tuesday night chat (10am Wednesday my time) I took myself for a good long walk down the main street of a small coastal town about twenty minutes from here. Light rain didn't deter me and I did feel better for having made the effort. Going for a walk along the seafront is something I have loved to do for many years so it felt good and "normal". I like to walk but rarely seem to fit a walk into my free time; mainly it is walking around shopping centres or into medical centres.
Today we went and saw the kidney specialist. Mostly good news but Ray has put on 10 kilos (22 pounds!) since the visit in October. The specialist explained that this is not good with the conditions he has right now. He insisted on raising the dose of the cholesterol tablet so I am hoping this does not bring the incontinence back. If it does we will drop it down again. Incontinence is too much for a caregiver to handle constantly and even specialists need to weigh that up against lowering cholesterol.
We have to go and see our GP tomorrow so will discuss the cholesterol issue with him. We’ve had so many visits to the podiatrist, the vascular specialist, the GP and have now caught up with our regular appointments with the kidney specialist and the neurologist. With all the tests Ray has had it is all so time (and money) consuming and doesn’t leave time for the other things I want to do in life. I would like to fit a bit of living in.
We did cancel the trip to our daughter’s this weekend but hopefully unless we get more appointments scheduled into next month we might visit her at the end of this month. I miss my grandkids, I like to have those long evenings to talk to Shirley and Craig too. Talking on the phone is okay but somehow it is all about this week and not about life.