Hi. Bad things: Our cat Poppy died. Nigel keeps wondering where she is and tells our carer that he does not think I know. Apparently the cat buried in the garden was one that fell off the roof but not Poppy. The day care rest home has once more said that they cannot accommodate Nigel as he gets too agitated. As he was recovering from yet another infection this was sort of to be expected and I would have thought that they should be able to cope with it. I had a meeting with them and found that they were not supervising meal times and that he was still being given some unthickened drinks so I agreed with them. I have subsequently had him home with me every day for the last week so not been able to get out as I still cannot manage his wheelchair.
Good things: I am much more mobile and started driving again this week. I still have to be careful about bending and lifting but we have managed with some innovative ideas: Nigel cannot rise from lying down without a lot of help so I now put the electric bed as high as it can go then tip the foot end down right down so that he can slide down the bed and out of the space at the bottom between the bars and the foot board. He can then use the bar and foot board to pull himself up so that I do not have to pull. We call it his 'bum skiing exercise'. 2nd good thing: I found that the nutilis shaker often leaked when I was thickening drinks. I was rinsing out a tomato ketchup squeesy bottle and realised it did not leak at all. It works an absolute treat and easy to hold. 3rd good thing. I introduced a friend to the super neurologist I had found in Southampton and her doctor referred her husband, who has PSP, to him even though they, like us, are out of the neurologist's catchment area. He prescribed Amantadine for John and my friend says that it is almost as if a light switch has been turned on, with improved mobility and speech. Isn't that lovely? It did not have the same affect on Nigel but maybe it is slowing down his progression. 4th good thing I have found another home who will take him one day a week which will be able to meet all his needs. I was impressed and Nigel liked it and they do singing two afternoons which he would enjoy I hope. He can start there the week after next. Sadly double the price but think it will be worth it but it will only be one day a week. Hope that you all have some good things happening too. We certainly need them to keep going. Love AliBee x
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AliBee1
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Thanks for taking time out in your busy life to let us know how you are both getting on.
Isn't it amazing how inventive and resilient we can be when up against the many problems of caring for someone. Any little thing you discover can make a big difference, whether in a practical way or just by stress relieving.
In your usual inimitable style, you've managed to list far more positives than negatives. Such a shame about poor Poppy and one more thing to strike your heart, but Nigel appears to have come up with his own theory, and hopefully that will help him through that particular upset.
The very best thing is that you've found somewhere which can take Nigel for one day a week, and where you know all his needs will be met.
It's not enough, but much better than nothing at all, and you really need that 'away-day' to refresh yourself and give you back a little energy to cope for the rest of the week.
I don't know how you do it, but it's always inspiring to read your posts.
Thank you. I would go under if I did not try to find the positives. So many bad things have happened in my life and I get really cheesed off with people telling me that I will cope as I am a survivor. After my wonderful husband Chris died aged 55 my daughter wrote a letter to 'a higher power' asking why things went so wrong for me and because she was scared I would go under but she said that I was like an acorn, so if the oak tree fell the acorn would start a new tree. That was magic for me. I wish that life could be easier though so have to appreciate small good things. Love AliBee
I feel for you at the loss of Poppy, we lost our little Sheltie this January, and we miss him very much, he's never far from our thoughts.
You are doing amazingly well caring for your husband. As Callendarsgal has said, your positives far outweigh your negatives. Hold onto those during the challenging times. We are always here for you and each other with a listening ear and a virtual shoulder to lean on.
Take care, hope you can find moments of rest this weekend.
Thank you.I have replied in detail to Callendarsgal. I find this site such a support and feel I have a huge family of unknown friends out their and that i am so lucky to have them all. xx
Thank you for your post. I like you try to find something positive every day even if it's only having an early morning brew in the garden before I have to look after hubby
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