This photo just popped up on Facebook reminding me of a “memory” from 3 years ago today. I went to book a table for 6 for a Christmas Lunch at our local garden centre. I asked for a table for 6 but only 5 would be eating as my husband would be in a wheelchair had to have all food liquidised. She asked if he could eat a meal if they liquidized it for him and I said he could. This is what they served him on the day with his own jug of extra gravy. The table was laid beautifully and they had removed the chair where Colin’s wheelchair was to go and moved the nearest table so I could swing him into his place without crashing into chairs and table legs. It’s strange but now, a year after he left me, I remember the good times before and during PSP, far more than the bad ones. I hope you are all able to make happy memories this Christmas.
Love to you all
Bev
XxxX
Written by
NannaB
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Happy Memories indeed Bev, it's good you are remembering the good times rather than the awfulness of PSP. We are hoping to make good memories with the family visiting, hope it all goes well. Wish Ben was willing to go out to places but he just isn't interested at all, says "what's the point" and I can't argue with that if that's how he feels. He is responsive when people call round to spend time with us and his face lit up when the grandchildren came last weekend. I had to release them from his very tight grip as he cuddled them, so sad.
Hi I Kate, it’s Ben’s decision to stay at home so at least he still has some control of his life. You have lots of visitors so he still sees lots of people. As I said a while ago, when I asked Colin if he wanted to go out, sometimes I was hoping he wouldn’t want to as it was such an effort for me. By the time we got home again and I’d struggled to get him back on to his chair, I was exhausted.
I hope you will have a good Christmas with all your family around you....more happy memories.
My family were hoping to take George out for Xmas lunch and we are booked in at local pub,but George has been so sleepy and this has been for past ten days so not sure if we will make it.doctor has been out couple of times and nurse has taken blood but as usual no one seems to have any idea what's going on with him,I am having so much trouble trying to get any fluid in to him,he is just so tired,any ideas on how I can get him to drink would be greatly appreciated.I am worried about him becoming dehydrated as doctor seems to think that if that happens he would need to be admitted to hospital and that is the last thing we want,really don't want George to be taken from his comfortable surrounding and pulled all ways in hospital.This site is the only place I get any answers. Best wishes to you all Lyn x
Lyn, what you describe is how Colin was when he agreed to have the PEG fitted as he was very dehydrated and his skin became so thin and started breaking down. It was a new lease of life for both of us but it was his decision not mine.
Brilliant Bev, thank you for sharing! I’m so pleased your remembering more happy times, sadly I seem to have forgotten my Dad before Psp, one day I’m hoping it’ll all come back x
NannaB, I found the same thing. After my husband died I found that I more often thought of happier times. I think it's way of expelling the hold of PSP on him and myself. X
Bev, u are an inspiration, all that you did for your husband, the positivity you find and the fact you are still helping others on this forum. I wish you a peaceful Christmas where happy memories hug you and bring about plenty of smiles for you and your family xx
Thank you Catherine. I thought when my husband died I would probably stop reading this site and leave PSP forever but I joined 5 years ago and feel I have got to really know so many people, it’s hard to leave them. Sadly most of those who posted back then have lost their loved ones and those with PSP who managed to post have gone as well. I expect one day I’ll leave the site but not yet.
Thank you so much for posting that, nannaB. Apart from making me happy that you have a nice memory, it has helped me smile and remember a good time with David for probably the first time. I have found it so hard to think of good things but you talking about a restaurant made me remember the hotel we always stayed at in Malta. We found a regular cheap all inclusive booking, and went I think about seven times over five years until David became too ill to travel properly. When we returned for our second visit we were remembered by the staff which was a lovely touch, and became regulars immediately.
The best thing was though on Our last visit, they could see that David was struggling and choking on food etc, and they reserved us a table in the corner which had really good access for the wheelchair, and as much privacy as you can get in an open restaurant, and every time we went in for a meal, there was a glass of water ready for me to thicken and a little pile of napkins as they had seen that I got through a few for a bib and cleaning David up as we went along.
It's the little things that help, and make a place go up so far in your estimations.
It was so nice of the garden centre to set everything up for you, and i bet it made you both feel so welcome and not any trouble (don't we always feel like we are being a bother!)
In February we had my birthday meal out with our family in an Italian restaurant.
Chris really was struggling by then and by the end of the meal was exhausted. I had the car parked outside and walked him in. As I started walking him out the manager summed up the situation and held Chris' other arm, chatting charmingly as he helped us through the crowd of diners. instructed a waiter to clear the way and we were escorted through a crowd of young people, cheerfully making way. Chris felt special, rather than a nuisance.
That was great Jean. I think it’s good to hear positive stories. If you read the newspaper or listen to the news on radio or TV you would think we were living in a world full of horrible selfish people but there are far more folk like the ones you described than the ones we hear about. Let’s hear more about the good guys 😀.
You are right Bev. Loads of people helped me with Steve. Strange as it might seem, right at the beginning, others would help Steve, even before I was fully aware that something was wrong.
The beautiful picture and two more stories of caring outsiders, the restaurant employees, helps restore my faith in humanity in regards to PSP. The struggles are so real and difficult, and it's such a complicated disease to explain or comprehend. It will take the best of humankind to care, to raise funding (or find grants) to study, research, and finally treat and cure this brutal bully psp. This is my first Christmas without Daddy, but I hear his voice in mind quite often. Merry Christmas to you Bev, and to everyone here!!
I hope you are able to have a very happy Christmas with happy memories. I hear Colin in my mind often and hope I never stop hearing him so I hope your Daddy’s voice stays in your memory for as long as you want it to.
That is so beautiful. I know what yoy mean caring for my young husand wirh cbd / psp. It is such heartbreaking and hard work...but after coming home from holidays....like Thanksgiving where I cared all day....etc.......i simply somehow just remember the good! Thank you for this post. GOD Bless you.
Another little note a nice actions by people.... In the hotel in Malta, we liked to go in the quieter lounge away from the entertainment sometimes, but the only access was down four steps, so I would have to get David out of his wheelchair, slowly help him down the four steps, and the amount of times someone got up and brought the wheelchair up or down the stairs for us was great. It was really nice that people were willing to help.
Yes ! I live in London where everyone says its unfriendly. [ I come from the friendly North ! ] But I found incredible help and support always - especially from young people and in restaurants. Its very warming.
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