Second day home!: Hi, thank for all your... - PSP Association

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Second day home!

Heady profile image
17 Replies

Hi, thank for all your replies! S is a lot better now. I think I have understood him, that the home was fine and he would be happy going back, next time! I did repeat it several times and didn't get a negitative signal. But I will check before I rebook!

The elbow, while not hurting, has had a knock on effect. Transferring him, is now a major exercise. The broke arm, is the one I use to hold him. He can't use his walker, so the wheelchair has had to be bought in! That means his waking and balance has gone to pot! The ramps I bought, a few weeks ago, to get him in and out of the house, have now been used! Thankfully, the work, altering the front door and hallway, start in a few weeks. Hopefully my back will last that long!

When this disease has a spurt on, it really goes, doesn't it? I know I have seen it before, but it still shocks! I can't remember who was talking about catheters, the other day, but thanks! At least I now know where to go to solve my next challange! For the first time, I KNOW I am losing this war. It's just a case of when now, not if!!!!

On that thought, S's Marie Curie sitter is due very soon. I always take the dog for a long walk, today? It's absolutely throwing it down, I think we are going to get very wet!!! Just what I don't need!!!

Sending everyone a very big hug on this miserable day, here in the south west of England!

Lots of love

Heady

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Heady profile image
Heady
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17 Replies
NannaB profile image
NannaB

That's good he didn't mind the home Heady. I found C took a dive on the 3 times he spent away and for me it was harder looking after him when he returned than before he went. It was great having respite but I found it twice as hard on his return every time, hence my hesitation in doing it again. I really admire those who can have respite and return refreshed. I was the opposite I'm sorry to say.

It's sunny here at the moment so hope the rain stops before you go out for your walk.

Enjoy.

X

abirke profile image
abirke in reply toNannaB

I have yet to send B anywhere , Or give him to anyone for the very reason you explain, NannaB, Unfamiliar territory and people leads to a disaster even a minor one leaves the carer more tired......I guess I'm just a chicken baby but . I have asked the boys to take dad to the movies, and I think this will happen...in the wheel chair ! We will see...

Heady , these wet days lead to beautiful flowers here...and poor California will gladly take your rain ....3 years in a drought(?) It was somewhere around 90* (32*C) in February! I'm sorry about S's elbow...no fun even if pain sensors are diminished! Good luck with your ramps.

AVB

Nanny857 profile image
Nanny857 in reply toabirke

Hi AVB, I hope B gets to the movies.

Best wishes , Nanny857

abirke profile image
abirke in reply toNanny857

Thanks, me too!

Mnd0vrmnky profile image
Mnd0vrmnky in reply toabirke

We're going to see deadpool today. Dad was laughing his ass off at the trailers so it should go well hopefully. After last time we will have a plan in place. Like get him sat down before I go and get popcorn etc. It can get complicated/stressful outer wise. :)

abirke profile image
abirke in reply toMnd0vrmnky

Oh yah thats why we are planning mobility by wheel chair. once we (they) find a spot , B may be able to walk to the sweet spot in the theatre......but his plane of vision is so obsure that they may all be sitting down front where the latecomers are destined with necks craned back......except for dads who eyes are in perpetual upward mode.....

yep if they UK has anything like Boyscouts here in America, remember their motto "Always be Prepared" ,,,,Have fun son and dad! I'm glad youre dad still finds stupid humor funny but that's the exact movie boys want to see so hopefully asses will be a little lighter than before the movie...hahaha

Good luck have fun :) And if dad falls, tell the gawkers its all part of the movie promotion..... ;)

AVB

Heady profile image
Heady in reply toabirke

I'm afraid all our spring flowers have come early this year, so the heavy rain is flattening them all!!!

Lots of love

Heady

abirke profile image
abirke in reply toHeady

Will they bounce back? hearty are flowers who bloom early!

AVB

vlh4444 profile image
vlh4444

So glad S didn't mind the home and is prepared to go back. I have managed to fix a week away with my sister in April and have arranged a very nice residential home for D for respite care. He seems prepared to go at this stage so fingers crossed it will be successful. This will be the first time I have had 'time off' since diagnosis so am desperate to make it work!

Do hope you are still benefitting from your breath.

Vicki xx

Heady profile image
Heady in reply tovlh4444

Hi, the first day is dreadful and the first day back is even worse!!! But I would thoroughly recommend it!!! For me, it was something that had to be done. Feel a lot better now.

Lots of love

Heady

Amilazy profile image
Amilazy

Hope you don't get too wet, the dog will enjoy it no matter. Glad S not too unhappy about the home. Know the problem of broken bone issues. M broke her left arm Oct 14 since then she has been in a steady decline, but still fighting PSP hard.

You may need to think about an OT visit to check if able to help with S's manoeuvring without hurting you. I am trying to get my head round needing 2 people to transfer M so using big wheelchair for some of the day rather than her arm chair, so I can get out, though not today heavy rain here in North Wales.

I would definitely recommend investigating catheritisation for S. Catheter put in M on Friday great success until yesterday when it blocked due to me giving M liquid Senna overnight to relieve constipation, it seems that Senna besides being excellent laxative causes urine to crystallise causing blockage, M in pain for a couple of hours but when replaced by Nurses M very happy. It certainly removed need for toilet trips especially at night, I have been getting some decent sleep. Bit more of an issue for men more blockages but well worth a try, do it earlier rather than wait until you are exhausted and using 10 pads a day, which was the case for me and M.

Best wishes for adaptations going smoothly. Tim

Nanny857 profile image
Nanny857

Hi Heady, good that S showing he is willing to go back to the home so you can recharge your batteries again. Hope you didn't get completely soaked walking the dog and you had time for a nice hot drink on your return before getting back to caring for S. Take care, Nanny857 x

Yvonneandgeorge profile image
Yvonneandgeorge in reply toNanny857

Heady happy that S is prepared to go back to the home for your next respite. George has got a catheter, it has been the best thing ever, no more wet beds, less washing, makes life a bit easier. George was good last week, this week he has gone downhill. I am going away with my sister in law again in March, my lovely brother is stepping in again, I am so lucky for having a brother like I have. Hope you did not get to wet Yvonne xxxxxxx

jillannf6 profile image
jillannf6 in reply toNanny857

i agree with what has been sid

lol jill

xxxx

jillannf6 profile image
jillannf6

said not sid

jillx

Katiebow profile image
Katiebow

Glad the respite went reasonably well despite the fall, the stress of worrying about how your partner is being cared for sounds almost worse than coping yourself. Hope when our time comes for this it won't be too stressful. Take care. Kate xx

Heady profile image
Heady in reply toKatiebow

Falls are only to be expected, in our lives!!! I'm afraid to say, I am so hardened to them now, it's not, what damage can he do, it's what damage has he done!!! They are bound to fall in a home, when we are not there providing 24/7 care, but at least this way, S gets all around care, most of the time, instead of none of the time!!! It's the only way we can look at it!!!

Lots of love

Heady

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