still sorting things out
I have just finished chat, taken the laundry and hung it on the line as it's a sunny day, set up some soup for lunch. Phew! there is so much to do. But I don't really feel like doing anything much. I just want to sit down and sort a few things out in my mind. So if you are not into that read no further.
I'm in a bit of a quandary again. I have just joined another board, this one is about dementia and is based in Australia so I thought it would be good to speak to the locals. Compared to Strokenet the site is in its very early stages. The chat board is there but as it is not organised it is rare that two people (out of maybe 200) are on at the same time. I have been sending emails to the Webmaster and recommended she come here and have a look. I know that sooner or later I am going to be asked if I want to be a monitor or host or whatever they are going to call it and I don't know if I want that kind of responsibility.
I came here looking for some answers on strokes as Ray had just had his fifth, that was roughly two years ago. I resisted chat for a while but realised that there would be a benefit in talking to others in real time. Even if the subject matter isn't serious, as it really isn't most of the time in caregiver chat, the support network is worth the time and effort. Far from exposing me to crackpots as I initially thought instead I have found loving, informed men and women who are ready to give of themselves and use their experience to help others.
One of the things that has really impressed me about this site is the fact that everyone is ready to post in support of others who are hurting. If you don't have a solution to the current problem it is no problem to send a hug, a welcome, a few notes on your own stroke, or your survivor's to give the newbie that feeling of having come to the right place. We are not health professionals but boy! do we have the hands on experience! And in sharing we do find a way of making something good come out of what was initially a bad situation. And also realising that there are folk much worse off than ourselves who are really struggling yet still managing to smile in the face of woe.
Yesterday Ray and I went to see his Rehab specialist from his hospital stay. Due to road work it took us an hour to do what should have been a half hour run. Then I had to pay for two hours of parking which I knew I wouldn't use, push Ray up a slope that wasn't designed for wheelchairs, wait for the Doc to call us, and the interview took ten minutes and could have been done over the phone! Guess we have all had those experiences eh? And so back in the car, back through the roadworks, s-l-o-w-l-y home.
One thing I did find out is that my expected estimate of when Ray should be back to full fitness was WAY out. I was told 12-16 weeks. Specialist said 6-8 MONTHS. You have to double everything as far as retuning the body goes after a stroke it seems, and also take into consideration that in the case of bed rest (Ray had eleven days in bed initially) the fitness loss has to be made up too. So he thought 6 months was the soonest I would feel that Ray had regained what he had lost. ( insert swear word here to express my extreme displeasure at that prospect).
So... holidays are out of the question, too much danger of disorientation and lack of balance resulting in falls and further hospitalisation. The disorientation is more from the vascular dementia than it is from the strokes and of course that will increase too as time goes by, so to do what we want to do as soon as possible has been my aim. I really do not want to wait six months before we venture out of this area again. Of course we do live in a beautiful part of the world and tourists pay thousands to come here for holidays but you all know you never get a real break if you stay at home at the time and caregiving is a real 24/7/365 job for me.
So... no sense in getting bitter about this and as usual acceptance is some way down the track. So I will try and think of a few projects to keep my mind focussed so the time passes quickly. That is always the best thing to do. Because time passes anyway whatever we do. And tomorrow could be the best day of the rest of our lives..
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