WARNING!! THIS IS A VENT!!

I can't believe that so much has happened in a couple of days since Ray got home. We have had a fall, some arguments, lots of "accidents" and this evening an argument about shaving!! Ray has used an electric shaver solely for the past two years and when I asked him to use it tonight he said: "I don't use this. I shave at the sink with a razor." That was really out of left field so I dropped the subject and will get Jeff to shave him tomorrow morning. Safer than giving me an ordinary razor when I am mad with him!

The respite is great, a time to relax, unwind, enjoy just being me for a while. The down-side is the homecoming and the settling back in. I have blogged on this a lot so you have heard my views on this. Some of you have experienced it when the one you care for comes home from hospital after a short stay and drives you mad for the first week or so until you get into a pattern of working together again. That is if you can still work together.

Ray has always had what we here call "wife deafness". That means if someone else asks Ray to do something, fine, he does it. If I ask he either argues the point or simply refuses to do it, or ignores whatever I have said and does it his way. This leads to quite a few difficulties. He won't do his exercises for me. Luckily he does them with the shower nurses but on Tuesday we had a little person we only have occassionally. Ray explained to her he doesn't have to do the exercises today and when I insisted did them very half-heartedly. He doesn't seem to know that he is doing them to maintain flexibility, he sees it as a chore, an imposition that he really can't be bothered with. I am envious of those whose survivor makes good progress because they try so hard. Ray has lacked the motivation to do the exercises all along and will not do them unless he is with a physio or with others he is trying to impress.

Because Ray had not done much exercise since he went into respite his legs have got much weaker. The fall was on the front path outside on his way to the Daycare bus on Tuesday morning. He was with a new worker who was obviously too far back as he didn't even attempt to slow Ray's fall. Ray was really shaken by the fall so the bus driver suggested they do the rest of the run and come back for Ray which is what they did. Forty minutes later when they returned he was feeling okay and I had patched up all the cuts, grazes and abrasions and he was able to go to Daycare. I think the incident shook me up as much as it did him. I always ask myself: was this a simple stumble, a precursor to another stroke, a fit or TIA? If Ray seems unhurt or unaffected I just feel glad and let things be.

I am reminding Ray of what he has to do minute by minute again. It is very tiring and I know it is the dementia and not Ray but oh heck! I wish it would end. He was like a sulky child today. Nothing seemed to please him so I let him spend most of the day on the verandah. I had Trevor home so he made Ray his morning cup of tea and gave him some cookies as a treat. Even when I feel he doesn't "deserve" a treat I give him one - it is the disease remember? I keep tellling myself that over an over.

I was nearly an hour late going into my caregiver chat today. I had a visit from a woman my age who for a long time was my best friend . We became best friends at eight years of age. We lived opposite one another and went to school together. We became friends and our parents became friends, a happy co-incidence. She was an after thought after three boys and so her parents used to take me out with her as a companion. Surprisingly two girls were a lot less trouble than one. Her father used to call us "the terrible twins".

We have been in and out of touch many times over the years as she and her family and me and mine have moved from place to place. We each raised three kids two boys and a girl, though my girl was first and hers last. When Ray and I came back here 26 years ago I hoped that I would be able to get back in touch with school friends and friends from my childhood but in many cases that didn't happen. Most of my girlhood friends were married by then and a lot had moved away and she was no longer living here. But it is wonderful when we see each other even for a few hours, so many shared memories. She was on the way north after visiting one of her children. She expressed the hope that we will see each other more regularly...we can only hope eh?

Despite being so late it was good that some caregivers were still in chat and I was able to go on chatting for quite a while. Thank you Bonnie for being my substitute and being so understanding. No, I do not like letting people down, particularly other caregivers but sometimes I need to put people in real time in the picture too. And visits from old friends are a rare event in our lives now. I was reminded of all the people we once associated with, for now I see that is what they were, fellow workers, colleagues, business associates rather than friends. I need to hang on to the old friends I have here in real time as that number is diminishing. Making new friends as you all know is harder when your partner has physical and mental disabilities.

I will go on looking after Ray for as long as I can. I have been on a couple of good Dementia sites lately and read of the anxiety and sleepless nights that occur when the time to place loved ones in full-time care is imminent. I don't know what I will be like when that happens. I shudder at the thought. And yet a small voice of wisdom, a tiny voice in the back of my mind, reminds me I am just one person, not superwoman and need to be aware that one day Ray will need more care than I can give him. I "know" it with my mind but my heart threatens to break at the mere thought.

I have a lot of sympathy for all those who care for someone, partner, child or parent with severe disabilities. I have a lot of respect for their sacrifice and committment. I am not sure how I would handle a severely disabled spouse or child. Ray at this stage is still fairly easy to handle, he is still mobile, still walks, talks etc. He is back off thickened liquids now and seems to be able to manage most foods as long as they are cut up into tiny pieces. Life could be a lot more difficult I know so don't know why I can't just "appreciate" that fact. But I am human eh?