The past week has been one of frustration on many fronts. I lost the internet for a week, partly due to my Telco who claimed it was my modem (also true) and the person who sold me the WRONG modem. Lots of days of trying to sort out the problem and the solution finally came when Trevor once again got his old computer up and functioning and here I am again on a dinosaur when I need to email, blog etc.

Ray has regressed not progressed this week with the sudden appearance of spasticity in his left arm and hand. The doctor says it is the volume of brain damage now as the cell death goes further towards the brain stem than before. Small vessels disease and diabetes out of control has made the problem worse. I will work on his arm and will see if I can find a privately funded OT to work on the problem of hand and arm exercises that I can do with him.

I am still sorting paperwork. This week I sent off hand-written letters to those few cousins that still keep in touch with Ray at Christmas time. I thought I would tell them now that Ray is going into care rather than have them sad when they should be happy. I wrote a few letters, had a cry, wrote some more – the reality of it all is still hard to take in.

I went to dinner with friends one night last week and went to the Lions dinner this week. I am still trying to come to terms with the fact that whatever I do I do alone. It seems as if life makes no real sense at the moment. I think I am just going through the motions, doing what has to be done, waiting for that “something” that will wake me up out of what seems like a bad dream. It is like the bad strokes all over again, only this time without the homecoming to look forward to.

I went to the Family support group at Mum’s facility yesterday. I go because I can catch up with the widows who go there who I know from Mum’s time in the Lodge. Only five of us this week and I was the only caregiver who has two people in care. It is good to have the old friends there but it would be better in a way if I had others who could relate to where I am right now. Even in the Dementia care group it is mainly daughters looking after parents rather than wives who look after husbands so there is no real peer group support for me.

I really missed chatting on Facebook and my reading and posting on Strokenet. The phone calls help dispel some of the loneliness, reading and beading distracts but reaching out to others whether in comments on posts, chatting online or just reading what others are going through and how they are handling it is a valid way of dissipating some of the stress for me. I can tell myself : “I am not alone in this, so many people are going through something similar.”

I did something yesterday that pulled me up sharp. I didn’t come home to get Lucas off the bus. I was in the middle of stressing bout Ray’s spasticity and had gone to find the nurse to discuss it with and the time slipped away. Luckily my neighbour over the road who has a child who also comes home on the bus took him to play in her yard. I usually do have him for an hour on Wednesday afternoons but my panicky brain just tossed that information in light of the more vexing one of what is happening to Ray.

This made me aware of how our world shrinks down to coping with one major event when we need to be looking at the whole picture. I HAVE to get my brain into gear and clean up the house, clean out the rubbish and take some time to think about my future. I need to keep up with what is happening to Mum, her summer clothes need reviewing too and I haven’t done that yet. I need to buy summer shorts and night attire for Ray. Summer is going to come whether I have my act together or not! I need to summerize the yard too, repot plants, redesign some of the front garden area to make it a bit tidier and get on with my yard work.

I didn’t think life would get busier with Ray in care, I thought it would be easier.