Ray was not accepted for the Transitional Care Unit as his progress is "too inconsistent" - well folks he has brain damage!!!. I guess it was an outside chance and I was willing to do it to get him home with more abilities. I know there is only so much money to put into these things and so they only take the "winners", those who will benefit most from the more intense physiotherapy etc. I am just sad that this time that was not Ray.
So I have had a couple of interviews with the social worker, members of the team who have been looking after him and now discharge planning starts. I am disappointed with what has happened but Ray is and always has been since the 1999 strokes down as "unmotivated" so I wasn't surprised with the result. It is a "move it or lose it" world.
I now have to acquire any new skills I need and the equipment to bring him home. I am promised more care but will see what the reality of that turns out to be. I am not happy with what has happened but as the care itself has been good and as it IS Ray's attitude that is the stumbling block here I guess I will have to accept the "things I cannot change”.
I hate the "being in limbo" feeling. I visit every day for at least a couple of hours around noon, I still visit Mum, do the housework and the laundry, pay the bills, make phone calls and send emails to keep people updated. The days tend to have a sameness about them so sometimes I don’t know what day it is but even Ray remembered that today was our wedding anniversary (43 years!!!) so that was really nice. We have also had congratulations from some of the other patients (the sun room mob) and some staff members.
I know some of my family consider this respite as I haven't had to do all the extra laundry etc that having Ray at home entails but for me respite is a time when I can get away and do my own thing and believe me this is nothing like that! We have had weeks of heavy rain so that has hampered the visiting and I have been his only visitor for many days in a row. Even Trevor hasn’t visited.
Change is always a challenge for me and so I hark back to the days when…Ray could walk, wasn’t incontinent, did listen and respond and wasn’t 24 hour care. The older nurse who came by today with a whole heap of notes on incontinence aids and the one who came to help me establish where Ray is as far as night-time incontinence is concerned are both a blessing, representing that body of nurses who really were there to help you cope with what lies ahead as well as look after your loved one in their care.
The good news is I may be entitled to some extras, like discounts off the pads I’ll need for Ray, deductions in the hiring of equipment and maybe some laundering if I need it. This is another disability scheme I can enroll in and one of the nurses is finding out about it for me. I will also enquire through our local pharmacy as they have another shop with a large equipment section so they might do discounting too. You have to save wherever you can and make one dollar go where two dollars would otherwise have to be spent. My Scottish ancestors would be so proud of me!
I keep on going because I have some family support, a few of my old friends still keep up with us though there are many others who have fallen away. My faith and church friends who have me on their prayer list also give me confidence and my cyber friends here who also show love and concern and send up prayers for me do too It means such a lot to me, particularly on those bad black and blue mood days.
So looking ahead, Ray comes home Monday 1st August and hopefully care team members start coming to provide the services he needs. At the end of that week is the wedding, on Saturday August 6th – I guess a big let-down comes right after that. Then a month more of winter and then Spring!!!!