Yesterday C decided it was time to don his winter cap and scarf for a push along the prom in a nearby tourist holiday spot. As you can see from photo, it was a glorious sunny day but what the hell. Apologies for position of image, I can't seem to turn it round. Note sun on corner of table.
Winter has come: Yesterday C decided it was... - PSP Association
Winter has come
33 Replies
•
George went to the centre today dressed just like C the winter is here, he looks lovely xxxxxxx
• in reply toYvonneandgeorge
Thanks Yvonne. I have to say that after seven months or so of swimming shorts and a t-shirt, dressing him for winter is a bit of a hassle. And he still isn't wearing extra layers or socks. Joy of struggling to get those on is yet to come!
Very spiffy and handsome, too! I awoke to snow on the ground for the first time this season. Now I can learn how to push a wheelchair in snow!
• in reply toeasterncedar
Well that is a skill I shall hopefully never need.
goldcap• in reply to
There are all terrain snow vehicles. I was looking into renting one as I am determined to go to the snow this holiday season!
sled chairs...new invention hahah
Maybe I should get some huskies to help!
Mush Mush!!!!hahhaha
My dog is available.
easterncedar I am so jealous! I so miss snow but never thought about the wheelchair aspect. Be careful with your arm. Do not want a repeat of last season's spill on the ice-have to keep you in one piece!
Thanks, goldcap! I'm pretty nervous about falling now, it's true, but with the lack of sleep these days I'm really more afraid of plain cracking up. up all night on the hour so far. Poor me!
The stage you are in is like having a new baby at home. And like a newborn eventually he will sleep through the night but it will take time and compromise on his part. In the interim you should follow the new mom rule-when they sleep you sleep ( no well I'm already up I'll just throw in a load of laundry and empty the dishwasher etc etc.) Catch naps when you can. Easier said than done I know. There is always one more thing to do around here and I stay up way too late at night even when he is not waking up on the hour. ( Lately he has been having throat clearing issues and some night moans. Says he is not in pain but it is impossible to sleep through). My dog also feels it necessary to wake me up at the crack of dawn no matter how late I stay up. Keep telling myself I may be by myself all too soon and will look back fondly on the moans and groans and doggie breath in my face in the am. Maybe it's time to discuss with him budgeting help?
Just a night or two to start so you can get some sleep. I know I resisted-too many important other things to spend the money on. I was so depleted from trying to go it alone that I was becoming not nice and impatient with him during the day and worse, and beginning to think that maybe his family members were right and he would be better off in a place with 24 hour care. And I had been vehement up to that point about keeping him with me until the end. But I was so fried that it started to feel like a viable alternative. Again baby reference, (sorry) but it is like childbirth. You try to go it alone (i.e. no drugs) and you run out of steam and end up having a C section. But if you have an epidural you can rest and come back strong and push the baby out. Guess all the talk on here of daughters having babies made me think of this
Or think of it like on a plane you put on your oxygen mask first (to assure you don't pass out I presume), then you attend to your loved ones. I'll stop now, Don't mean to lecture. I just know I saw it as a sign of weakness (when I was where you are now) if I got help or that it was such an extravagance when actually it was empowering to admit I could not do it all by myself and view paying for assistance, as a basic necessity, IF I was going to be able to continue caring for him. Hope this makes sense and you feel better soon. Wish we were on the same side of the country and could visit Take care of yourself and I hope things get better for you both soon.
Thanks for the kind concern, goldcap. Your advice is all good. He's asleep right now. I'd better toddle off! Love, ec
It must be a lady thing but M says it is cold when over 15C (70F), her summer outing wear is coat and hat, lately it is 2 cardigans a fleece, quilted overcoat, scarf and woolly hat gloves and thick socks, yesterday may have been sunny but here there was a wicked cutting east wind that made M demand to go in after 15 min. Still C looks happy ready for a change of scene.
Best of luck Tim
Maybe it's that being immobile makes a person colder, too.
Oh, it is still around! Normally in South Africa this time of year. So I miss having to clear the mountain of leaves from the drive.The first morning of frost on the ground, Dog was not impressed! Wintertime sucks!!! Bring on the Spring!
Lots of love
Heady
Ps, if C wants to wear his hat and scarf, there is no harm, unless of course, he is moaning in three seconds flat, he is too hot!!! After you have no doubt, spent hours looking for the damn things in the first place.!!!!
What a handsome man, no matter what angle! I hope ya'll had a good stroll...Be won't stroll with me anymore...
AVB
What a great photo. The sun is also shining on C. I hope there are many more sunny days to enjoy.
X
C looks well indeed. xx
Looking very dapper, love the sunshine even if it's a tad chilly. We get far too many grey skies and it doesn't help low moods. The sunshine just has a massive effect on the feel good factor. Hope you enjoyed the stroll. X
• in reply toKatiebow
A large part of our reason for relocating to south west Turkey from north west England was climate which, we believe, has a huge impact on life. Here we live much more outdoors, eat locally grown food that tastes wonderful and generally have a much higher quality of life than in rainy Lancashire. Of course, when we moved here in 2004, we never expected PSP to enter our lives but, as I have written previously, we have had great medical care here.
Katiebow• in reply to
Sounds tempting!
goldcap• in reply to
pattz, I just had to reply. What I great adventure! And am glad it was pre PSP because then you might never have done so as it sounds like you are both quite content there
• in reply togoldcap
C was a gardener and always wanted to design and create a garden in a more reliable climate than UK. The garden is here. Like a jungle now but the envy of many and he did it all. It gives us endless pleasure and will be his memorial.
goldcap• in reply to
OMG what a wonderful thing! My husband wants to be cremated (his brain to PSP research) and I have heard of sprinkling the ashes over the plants so they live on. A friend's mother had a prize winning rose garden that she worked so hard on with pride. People came by on tours just to walk among the flowers-it was a beautiful thing. That is where she wanted to be
Much colder here. C was dressed like that to go to the hospice yesterday. He usually complains of feeling cold. He never felt cold before PSP. He was always active.
Jean x
Jean, my husband used to be broiling all the time. Always wanted air. I was always wrapped up it was so cold in our house. Now he is cold all the time and I am burning up from running around doing a million things at once!
Doc said PSP messes up your ability to regulate your body temperature. His hand and feet are always freezing and his feet turn blue. Luckily we are in a mild climate area for his sake. I miss wrapping up in scarves and sweaters.
Does he go to hospice daily and what does he do there if you don't mind me asking?
Thanks Jayne
C is just the same. His feet are cold but he sometimes says they are burning.
He was always a sociable man and finds it so frustrating to struggle with speech. The hospice is great.He goes every Monday for 5 hours. Has lunch. They have talks, quizzes music etc. Lots of carers there. He loves it. They are doing a Desert Island Discs idea at present. Someone shares their life and music tastes and memories. Excellent idea as they get to know each other better.
Love, Jean
Jean, wow that sound so great. I went to a support group here but it was mainly the caretakers and patients with Parkinsons.
He nor I could relate to their issues with living with a debilitating, chronic disease. It just felt like PSP & MSA & CBD were more insidious. I know that's not very PC but there are so many paths to treatment and research out there for them. It just does not seem to be the life sentence like it is for us. I would like to attend a caregivers support group like this site and have him go to something on his own like yours does. My husband too was a very sociable, extremely verbal man. It always seems to strike them the worst Anyway glad you found something for him. Maybe I need to organize something like this where I live.
XO Jayne
I know what you mean. Its difficult to explain how there's such a difference between a disease which is slowly progressive or not and what we have to manage without giving in to hopelessness.
I live in London and there is more likely to be an awareness of PSP. Although none of our GPs had heard of it !!
We also have a Carers Centre I am investigating. I am offered 12 weeks counselling and there are lots of activities for carers and the cared for.
It takes some energy making the effort, doesn't it ?
Good luck, Jean x
Very dapper-love the scarf! He looks so alert and well. Good for you for getting him out.
I find fresh air and a stroll always works wonders for both of us.
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