Couldn't come home for Christmas

Hi Everyone! my posts are few and far between. I guess when diagnosis was first made I was obsessed with what was happening with Bob, I was on here quite a bit. But life goes on and there gets to be an acceptance. It has been over 3 years now, that a proper diagnosis of PSP was made. It will be 2 years in February that he has been in a care facility, and a darn good one. Will be 3 years in March that he had feeding tube placed, with no regrets. He still has pureed foods as well, and he drinks juice boxes. He got a power chair in the summer, that has been a God send, he was not able to move himself around in his other wheelchair, so was mostly bed bound. The physio therapist still gets him up with his walker, to keep those muscles working, but it is a big challenge. Thank goodness for technology, if it weren't for the iPad and cell phone, no one would know he was of sound mind. Those (and thumbs up and down) are his only means of communicating, although the typing is painfully slow, he can communicate. I was feeling downhearted, waiting for him to ask to come home for Christmas, I guess he knows that isn't possible anymore, he didn't ask. So instead of that, I booked a room that is available for family functions at the continuing care. We brought in Chinese food Christmas Eve, all the kids and grand kids were there, 13 of us all together. I brought my "Magic Bullet" and pureed some food for Bob. He didn't eat much, but got to taste some anyway. I hope everyone else that celebrates theses holidays has had as good a time with there loved ones as we had.

Best to you all!

Joan

4 Replies

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  • Like all of us, you can only do what you can and it sounds as if you managed to have a good time in difficult circumstances. Long may he continue to communicate.

    X

  • It sounds like you got it goin on for your husband. I think that is absolutely marvelous idea bringing Christmas Eve dinner to Bob! It's' not the food, it's the family.

    AVB

  • Thanks for the update, Joan, and glad to know you are still checking in. Nice job making Christmas for Bob and getting the family together. Hope the New Year brings you some peace and joy,

    Ec

  • Sounds like you made the very best of a bad situation, lovely to have your family around you. Xx

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