OK! Guilt trips over!!!: Name one good thing... - PSP Association

PSP Association

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OK! Guilt trips over!!!

Heady profile image
42 Replies

Name one good thing that you did/are doing for your loved one?????

Mine, I stayed as positive as I could and encouraged him do all the exercises that I am sure made a difference, if not in keeping PSP at bay, at least gave him some thing to look forward to each week. Namely, the wonderful young lady that was his personal trainer!

Lots of love

Anne

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Heady profile image
Heady
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42 Replies
Satt2015 profile image
Satt2015

Nice post Heady!!

I shop for my Dads food weekly at Marks and Spencers because he prefers their food than the nursing home. I try and cut my Dads hair as often as he will allow. I visit as much as I can and always attempt to make him smile, even if only once! X

Edit: I also keep the nursing home on their toes!! 😁

Yvonneandgeorge profile image
Yvonneandgeorge in reply to Satt2015

Anne I look after George the best I can, getting him all the care he needs, giving him food he likes, keeping him safe. Big hug to you Anne xxxx

Nanny857 profile image
Nanny857 in reply to Yvonneandgeorge

Hi Yvonne, I hope you are doing as well as can be and George. I haven't been on for a while but I'm trying to catch up now.

Yvonneandgeorge profile image
Yvonneandgeorge in reply to Nanny857

Hi Nanny857 we are ok, George had a chest infection, Lucky he got over it, it was a frightening time. Sending you a big hug Yvonne xxxx

Nanny857 profile image
Nanny857 in reply to Yvonneandgeorge

Sending one back Yvonne ( )

Cuttercat profile image
Cuttercat in reply to Yvonneandgeorge

Glad he's better. Charles has something brewing in his lung as well. Scary. Coughing so hard to manage. I know you and I are in the same stage of PSP. I try my best as well

Cuttercat

Yvonneandgeorge profile image
Yvonneandgeorge in reply to Cuttercat

Cuttercat still awake George has been banging the bed I feel like screaming, so tired, he has quietened down but sleep has disappeared for me xxxx

Cuttercat profile image
Cuttercat in reply to Yvonneandgeorge

Me too. Charles banging as well and coughing. Ouch

Xxx

Yvonneandgeorge profile image
Yvonneandgeorge in reply to Cuttercat

Laying her thinking I have to get up in 5 hours will I sleep tonight, george has gone off to sleep, thinking should I get up and do something? There are some chocolates in the kitchen, shall I shan’t I , no I think I will stay her and save the calories. Ha ha Yvonne xxxx

NanBabs profile image
NanBabs in reply to Yvonneandgeorge

What more can you do than that Yvonne.

Hugs

xx

NannaB profile image
NannaB

I let my darling make decisions using thumbs up/ down right until the very end.

XxxX

Nanny857 profile image
Nanny857 in reply to NannaB

Hi NannaB, hope you are doing ok. I've not been on for a while so trying to catch up.

NannaB profile image
NannaB in reply to Nanny857

Hi Nanny857

I’m doing fine apart from the occasional blip but blips are to be expected. Life after PSP is busy but good busy.

How are you doing?

XxxX

Nanny857 profile image
Nanny857 in reply to NannaB

Good days and frustrating days. W still on his feet albeit a bit unsteady, still able to speak when he really tries, and can eat his food which is good but I think incontinence is starting to set in and he gets confused at times.

NannaB profile image
NannaB in reply to Nanny857

So very hard.

Sending you a big hug.

XxxX

Kevin_1 profile image
Kevin_1

Even when she is being difficult I give her a hug and a kiss.

Nanny857 profile image
Nanny857 in reply to Kevin_1

Hi Kevin. Hope you are doing as well as can be and Liz. Apologies I haven't been on for a while so trying to catch up with everyone.

Kevin_1 profile image
Kevin_1 in reply to Nanny857

Hi Nanny857!

How are things with you?

Great to see you back.

We get by... PSP is a struggle, but my lovely is still just that.

Hugs

xx

Nanny857 profile image
Nanny857 in reply to Kevin_1

I bet she is Kevin. We are doing ok. W still able to communicate most of the time, and still eating well. Balance is unsteady and he needs help when showering and getting dressed / undressed. He's had a few 'accidents' so I think incontinence may be setting in. A few of his ex work colleagues have started to call and taken him out for a coffee which is good. Gives him a rest from me lol.

Kevin_1 profile image
Kevin_1 in reply to Nanny857

That's wonderful that his colleagues come and take him out for coffee.

The incontinence thing is a real dignity downer.

Chuckles - at least you get a break too.

NanBabs profile image
NanBabs in reply to Kevin_1

Maybe she`s difficult so she can have her hug and kiss !!!

xx

Kevin_1 profile image
Kevin_1 in reply to NanBabs

Chuckles- You got me on that one!

xx

Helen119 profile image
Helen119

I stay as positive as I can and do everything he wants me to for him.I cut his toe nails and massage his feet even though I have always had a thing about feet being revolting things, I make him laugh while I’m clearing up his poo from my floor.

Lots of love and hugs to all

Helen xx

aliciamq profile image
aliciamq in reply to Helen119

Yep⛄️

Brenive profile image
Brenive

I asked Ivor what he like me doing for him the most , his answer was taking him out for a meal. Is this a reflexion on my cooking. ( I wonder) Brenda xx

abirke profile image
abirke

I took Bruce to the library weekly. I read the titles of the audio books starting with first book on shelf to the 10 th one chosen. Sometimes I had to read 30 book titles before he heard one of interest! then we'd go to the movie section and I would read the titles of movies....I limited that to only 5 ......

abirke profile image
abirke

Great idea Anne and may I add that if someone can think of other things they did that was good, they should add it to the list......such as : (see next post)

abirke profile image
abirke

To help B sleep and just do a bit of yoga, I would massage his body starting with toes and ending with his forehead; it would relax both of us ....

Nanny857 profile image
Nanny857 in reply to abirke

Hi AVB Hope you are doing as well as can be. Been a while since I've been on so trying to catch up.

Nanny857 profile image
Nanny857

Hi Anne, W loves getting out for a drive in the afternoons. Today I took him to visit his aunt who lives approx 65 miles away and we stopped off for lunch on the way. He still has an interest in football so I take him to watch his favourite football team play their home matches.

Hope you are doing well. Nanny857xx

Heady profile image
Heady

Nice one, those who have replied. What about the rest of you? Come on, everyone does something nice for their loved ones, even if it is only the once!!!

Lots of love

Anne

Cuttercat profile image
Cuttercat in reply to Heady

I always make certain he has variety in his meals. He likes that. I shave him well and always make sure he looks good. PSP has made him look young again and I'm glad.

Cuttercat

doglington profile image
doglington

Chris was always a well groomed man and I kept him that way until he died. He was creamed and massaged ! Worst for me was dealing with his false teeth ! I had to be trained by the dentist - but when he went into the hospice for respite three weeks before he died the doctor commented on his healthy mouth !!! - and lack of pressure sores.

More important I always made him feel loved and included in conversations socially.

Jean xx

raincitygirl profile image
raincitygirl

Great post idea Anne! Love it :-)

I make the daily shower experience a positive for hubby; I drive him out for his favourite frappuccino every day (no kidding: 365). I sit in the car with him while he listens to BBC World and enjoys his drink. Since he can still eat, I make sure he has something to eat that he enjoys every night. I explore every thing I can think of that will help his quality of life: SALT, physio, adaptive speech technology. I remind him he is the same man he's always been: he just has this s__t disease that is doing things to him, but HE is the same man I've always loved.

What I'm working on is not being a b__ch at night when he wakes me up 8-10 times.... Hey...you gotta have goals ;-)

Anne G.

abirke profile image
abirke in reply to raincitygirl

God bless you Anne G, This is exactly what we need! to make sure that what we did/do allow them to have a quality of life that reminds the both of you how much you love each other! Good job! Sorry about the nights.....

raincitygirl profile image
raincitygirl in reply to abirke

Fortunately not every night ;-)

Thx Andrea!

Tippyleaf profile image
Tippyleaf

Great idea Anne (Heady) good to remind ourselves of all the positive things amid the sheer drudge and exhaustion of PSP.

I have organised a weekly massage at home which my hubby loves keeps him a little looser and more relaxed for a day or so and he sleeps so much better on the massage night so a win win for both of us😊

Trying to bring out a smile on my hubby these days so much harder. He has totally lost the ability to remember pleasure- so even when he appears to enjoy himself he denies it afterwards. The absolute exception is the massage which he always says is wonderful.

Have really enjoyed reading everyone else replies and I am inspired - thank you everyone.

Love Tippy

allotmentartist profile image
allotmentartist

Massage his sore limbs it is his knees at the moment but moves about,and cook him his favourite meals he really likes his food and is still able to enjoy it.x

NanBabs profile image
NanBabs

Hi Heady,

I`ve always said that no matter what you do, if you can go to bed knowing you did your best, then you have a clear conscience and you can rest easy. Not always an easy mantra to follow , mind you !

Glad you are making progress.

xx

jmoffat profile image
jmoffat

I get it

aliciamq profile image
aliciamq

Everything😆Is the one thing, Heady. The best thing - a Good thing ~ I am kind to a man who was not the soberest greatest husband, father, nor head of house. All of that old stuff is gone(ish😄) and the nice young 17 yr old I loved 52 years ago is who I get to be home with and spend my retirement days with. My good thing is moving forward everyday making them the best in kindness and peace - 98% of the time😆

Katiebow profile image
Katiebow

Lots of cuddles, face stroking and serving the food he enjoys, wish he enjoyed going out but he is adamant that he has no interest so try to make him as comfortable as possible. Be glad when I can throw the doors open to let the fresh air sweep over him but this grim British winter weather still seems set in. Roll on the springtime. Xxxx

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