My husband is being cared for in a private care home. He is the only patient currently. The home is a split foyer (meaning you enter halfway between floors. The back door is up a full flight of stairs. In the fall I was able to get him out to see the beautifully colored leaves. I took him to his financial advisor to have his "signature" witnessed. My plan has been to take him out on Christmas Eve to see all the lights that are displayed in the different neighborhoods.
Today the caregiver said the hospice nurse has nixed this foray into the real world. We are so disappointed to have to let this plan go. My husband's walking is never good - but he has what we call good days and bad days. Lately he has had nothing but bad days. His gait freezes up and he can't move forward at all even though he always uses a walker (that's what we call it in the US). On bad days, he has to revert to the wheelchair to get to the bathroom.
So now our Christmas will consist of me reading Luke 2:1-20, singing a carol or two, and me opening his presents and showing him what "he bought for me." He's on a JPEG tube so he doesn't even get to have any Christmas cookies, fruitcake or wassail (what is "figgy pudding?").
Did I tell you that he can sing along with his music therapist? It is amazing! He can't talk but he can sing. The therapist told me that a different part of the brain is responsible for singing than the one for talking. I wish I could get him to sing answers to my questions. Than I could know what he is thinking all day long.
Hope everyone has a very Merry Christmas and may God's light shine on you all during the holidays and all the days of the New Year.
Written by
carolinesimmons
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What a shame! However it may not be as bad a curtailment as it seems.Evenings are not necessarily a good time for pwPSP anyway. Mum was always at her best in the mornings even when her days merged into many naps. She found lighting rather stressful and it fazed her so you may possibly be more in need of showing your husband than he is of seeing them. I went through lots of issues and preparations many,many times in order to take mum out and she didn't even seem to be looking at what was there, she was just happy to be out! Last year I got mum a fibre optic tree for her room and she absolutely loved it! It is very gentle and enough to give her the special Christmas feel without affecting her eyes.All the staff commented on how pretty it was and it was a great conversational opener. I left it up a little longer than I would normally as Mum enjoyed it so much and deep I think we both know it would be her last Christmas. Having been only 3 when the war broke out and much hardship in her early years, Christmas was always Mum's favourite time of year. Now we have the tree here and it feel like she is with us, along with little sentimental bits and pieces that she used to have on her tree. I wish you and all carers and pw PSP and CBD peace at Christmas. Dianne x
in reply to
Dear Daughterno1, I agree, I think it is mean of the nursing home not to encourage and even help you to take him to see the lights. Even just going out for a little while would probably be a great pleasure for him, to feel the fresh air on his face etc, as long as he is wrapped up warm. Once based in the nursing home atmosphere I think people feel cut-off from the world and it is good for them to see outside. Next year may well be a different situation! However, I also liked the idea of him having his own little twinkling tree in his room for you both to enjoy..Great idea, go for it mate, as Peter Jones would say!
thabj you very much for your good and kind greetings - i do hope you can get our husband out in his wheelchair to see the beautiful lights - it is very mean of the hospice to veto this innocent journey and i find it incomprehensible tht they would do this ;;'''
Dear Carolinesimmons, Sorry, Just seen that I have written the reply intended for you to Daughterno1! I am a bit tired as my Dad, with PSP has been in hospital for almost 3 weeks now and I am just warn out with it all; but today he has started eating again. He stopped for 5 days and I have been going in twice a day with special treats. He is on 'a line' for fluids. Maybe we have survived the crisis and he certainly cannot go out to see the lights! ! ! Make the most of it whilst you can, I say.
My dear Caroline...what a pain PSP is...and what a pain some nursing home staff are ,too. Christmas is just aroun the corner and I suggest you go back to the hospice person who nixed your plan and try once more.
maybe she wanted to say yes but her responsibility got in her way! What is her major concern...that you wont be coming back?.Aleviate this Nurses fears by telling her how you'll manage it. Maybe take a strong family member along to assist. But read what daughterno1 has to say...late into PSP my bride would nod off as soon as we drove away...but she loved going out for a drive...always with sunglasses in the day.
To get your hubby out tho' you'll need a transfer chair to get outside where your automobile will be parked (hopefully right outside the door).
Once in front of the open car door if you can get him to stand up, twist hubby round and let him slowly fall into the front seat...watch out for his head. Close his door ,you get in and drive off to see the lights...and enjoy.
Excuse me stating the obvious,Caroline, about getting into your automobile ...if you've already some experience doing this with hubby ,that's great.No problem!
What you mentioned too about singing is exraordinary. Carry on and get hubby to sing to you. Example ask him to sing a song like 'It's a Wonderful World' but then to add his own words...and see what happens.
Caroline my thoughts are with you across the pond,be strong courageous keep calm,
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