Thank you to all you wonderful wonderful people who responded to my 'Feeling Useless'.
Nigel now has a sign by his bed asking people to speak simply to him and give him time to respond which I made and took in with me this morning AND after having had a polite, but sort of hinting complaint, talk with the Sister this morning the 'This is Me' arrived at the bottom of his bed at lunch time and at least two of the HCAs have read it. It felt like I had climbed a mountain and reached the summit despite it being such a small victory for commonsense. Also, whilst he was asleep this afternoon, using my mobile phone I started the cloggs in action for the sale of our house and arranged a bungalow viewing before I go into the hospital tomorrow. Reading your comments I decided that dilly-dallying was no longer an option and that it will hopefully disrupt him less than it would do if it was crisis point.
Thank you once more and big hugs to you all from the bottom of my heart for 'being there' for me.
Ali B xx
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AliBee1
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I missed your original post, but the sign is about the best idea. When David had a hospital appointment, or went into respite care, he always had me make him a laminated sign that he could wear around his neck on a lanyard, like an ID badge.
It said something like:
My name is David, I suffer from PSP. I cannot move, talk, balance or swallow well.
I take xxxx tablets, and my GP is xxx
In event of a problem. Please call Derek on xxx
I was really sceptical as to why he wanted it, but for David it gave him a very big sense of security, he could just indicate the card if someone tried to do something or communicate with him.
Great Idea, I will do the same for Leon (hubby) who can no longer speak, unfortunately, some put him into the TOO HARD BASKET and just don't try to communicate. His mind is brilliant, and I feel so so sad for him. When I left today, he stayed sat in his wheelchair, a victory for me, as usually when I leave about 4p.m. he asks me to put him to bed, then, naturally, has a bad nights sleep. Today he said "Think of me tonight at 9pm, when I asked why, he said because that is when they will get around to putting me to bed, he likes to be in bed by 7p.m. as he is up early. I mentioned it to the R.N. who said she would put his request in place, we will see how long it lasts, I also left a note on behalf of Leon saying exactly what I had said to the R.N. Even the mornings when he doesn't have a shower, they do not even wash him. I also left a note asking for him to be refreshed, as it makes him feel awake and fresh. Honestly common sense does NOT prevail in these places. That is my gripe for today, now for a much needed wine. Hugs to everyone
How amazing is that, all it takes is someone to listen, hope Nigel is starting to feel better, and you can get him home soon.
You have been very brave dealing with the decision to move home, for a long time Ian said no we were staying put, we lived in our lovely house for 30 years, but I said to him its all about making his life easier, and that I would live anywhere, that helped, as he felt guilty for the disruption which is inevitable, and we made a big effort to have his room ready first, I put him into a care home for respite over the few days before and the moving day, and that worked well.
The other thing to bear in mind is that any equipment you have has to be moved by the council, so arrangements need to be in place early.
Good idea to make a list of who you will need to contact and tick off as you do it, I know it’s early days for you, but it is a new adventure you are starting out on and I’m sure you will be very glad when you’ve done it
Missed your first post Ali but it sounds a great idea having a sign to indicate that given time your husband can make himself understood. My husband is in respite this week and the staff seem very kind but not sure they all understand that Ben can think clearly and make himself understood with voice or blinks/thumbs up/hand squeeze. I hope that they all give him that time, I know some do. xx nex time he goes in I will suggest a sign too. Best of luck with the house sale and move, sounds daunting but will vector the best. xx
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Feeling useless 
The new normal.
Belated update!
Still feeling totally inadequate
