Doreen,

Welcome to the Blog Community. The first year of stroke recovery can be the hardest; you and Bill have made it through it together.

Doctors can be so so wrong with their prognosis for improvement after stroke. They tend to lean on the skeptical side not taking into consideration a person's determination.

Sorry to hear you did not get some rest for yourself as Bill would not go to respite. I understand how you felt when he cried and didn't want to go; however, for YOU it is vital to have that time away so you can re-energize yourself. If you're not physically and mentally healthy, yuo'll be of no use to either of you. Are you able to get someone to come into your home so you can take time for yourself, even for a few hours (friend, clergy)

Take care and God Bless

Doreen:

welcome to the our wonderful world of blogging wherefirsthand you will see the benefits of writing it's hugely therpetic in all aspects even when you are down or up in your emotional roller coaster ride. We have another caregiver from Australia. I know firsthand you all caregivers are our angels on the earth who help us live meaningful life one more time. I am sure as more time progresses & Bill's talking improves he will allow you to send him in respite care for a week till then hope you find some friend to stay with him while you recharge your batteries.

hope to see you more around in here.

Asha

Doreen:

I just checked message board & realized Bill loves to play piano & miss playing piano. I had read somewhere there are piano music available for one handed pianist. I would encourage Bill to look into it. you never know he might find new passion in that.

Asha

Hi Asha,

Bill cannot read music, he plays by ear but he does get on the piano sometimes and tries to play with his left hand but he gets frustrated and does not stay on for long. His physio said he is ok to leave on his own for a couple of hours at a time so on a Thursday morning I do volunteer work at my local neighbourhood centre where I run a computer club for seniors. I used to have respite for 3 hours and a carer used to stay with him on that Thursday but Bill used to act up on that morning so by the time I went out I was exhausted.

I used to teach two classes per week and help out in the office and on the reception desk, I used to volunteer 10/12 hours per week but now down to two hours and I miss it. Bill would like to go out every day but I have health problems myself and have had back operations and have osteo arthritis in my hips and spine it is getting harder to lift his wheelchair into the car so have to tell him we can only go out every 2nd day. Also I only go to the local shopping centre as I have only been driving since last October and Bill was a truckie and tries to tell me how to drive and he used to grab the steering wheel when I was trying to park. He does not do that now as I told him that he would not come in the car with me again if he did that.

We have no family close to us as all our family are in the UK and our son lives 3 hours away and daughter live a 2 hour flight away so we are on our own as most of our friends don't call in any more and their excuse is it is heartbreaking to see Bill trying to talk and seeing him in his wheelchair. I have never blogged before and once I have started it is hard to stop pouring my heart out.

Must go now as Bill is now getting ready after his shower so I am putting on the kettle for a coffee for him and his carer.

Doreen

Doreen, I know it is hard for a lot of men to accept a carer coming into the home so dropping him off at Daycare onc or twice a week is another option. Then you get to do whatever it is you want to do until you have to pick him up again. Sometimes Ray didn't want to go to Daycare at first but really he has no choice as that is one of the conditions of me looking after him, that I have some time off twice a week, Mondays while he goes to Daycare, Fridays while he has a minder. Of course one of the things I do in that time is visit my mum who is in a Dementia Lodge so I put that to him too...I don't go with him as he doesn't like it there, maybe because it reminds him of his own need to go into one one day... so it is better to go alone and spend some time with her.

Our shower nurse/minder is a man in his fifties, very experienced, very good with Ray and Ray enjoys his company on Fridays and that is good for me. Sometimes we have someone else of course but I tell Ray that this is only a "one off" and Jeff will be back next week. The shower nurse also helps Ray with his exercises so that is keeping him mobile too which is another plus. I am so grateful for the services we get as it does stop some of the back strain if someone else does the bending and stretching for me three times a week. I still have to shower Ray but only four days a week.

When the shower nurse is here for an hour Tuesdays and Thursdays I go for a walk. It is good to get out in the fresh air. If it is raining I might just drive over to the beach and watch the sea for a while. You need to get out and away when the carer is there. And let them make the coffee, not you waiting on them. And it does Ray good to realise that caring for someone costs money. Even if I don't get much for doing the same job.

Sue.