Why am I posting this?: Why am I posting a... - PSP Association

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Why am I posting this?

AliBee1 profile image
30 Replies

Why am I posting a photo of a new hosepipe head? Well after 3 attempts to water the garden in the hot weather over Easter I flung the hose pipe down in frustration as I had to answer another shout from himself of 'Help. help. Where are you'. Result smashed head and need to buy a new one !! Today it is pouring with rain and I do not need to use the hosepipe. After 4+ hours of grunting and groaning last night I just saw the funny/ironic side of things when I saw it in the garden this morning !! Love AliBee

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AliBee1 profile image
AliBee1
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30 Replies
dollydott profile image
dollydott

Keep seeing the funny side AliBee It will keep you sane.

It's sunny here just now but I know the rain is on its way at least you won't have to worry about watering the garden for a few days 😊

Lynda xx

Humor keeps us going & gives us a giggle with our tears.

I love your photo & your humor.

Alibee thanks for sharing. Sending hugs, Granni B

SewBears profile image
SewBears

😂 Good one 😂 Thanks for the smiles

I said to someone the other day I’ve become the “help”. Whatever I’m doing he expects me to come immediately when he calls. If and when he lands in a nursing home he’s going to be greatly surprised by the lack of fast response.

Marie_14 profile image
Marie_14 in reply to

Jeff he will probably be surprised at the fact he doesn't get any response sadly. I hope you find a good nursing home for him if it comes to that.

Marie x

SewBears profile image
SewBears in reply to

It is difficult to feel appreciated when our loved ones are so demanding. Oh the things that we take for granted! Frustrating, but “sometimes” rewarding.

I escaped for half an hour and took the dogs for a brisk walk around the block this morning, before it got too hot. I wore a new pair of sunglass shades that have a brown tint to them. All of the scenery was either yellow or brown in color. It was like I took a step back in time. Something you’d see in an old Western movie. Of course this gave me a lot of nostalgic thoughts. I sure do miss being a couple. He’s here, but he’s not here.

I am struggling with how expensive nursing homes are. The health care system in the US is so very badly broken. It’s not even an option for me at this point because of the expense. I wish you all the best should you end up needing to go that route.

Xoxo from I SewBears

in reply toSewBears

I’m in the USA too and he isn’t going into a nursing home until I can’t do it any longer. Around here a nursing home is 10k or more a month. Medical bankruptcy is huge in the US thanks to no rational healthcare system.

SewBears profile image
SewBears in reply to

Exactly! Same boat here. Are you anywhere near Las Vegas?

in reply toSewBears

I’m in Philadelphia, PA.

SewBears profile image
SewBears in reply to

Too bad we aren’t closer. We could trade off a few hours here and there. Give each other a break.

in reply toSewBears

From one frying pan to another?

SewBears profile image
SewBears in reply to

Cute!

in reply toSewBears

This maybe a silly question but... Do you have any young dad's & moms in your area that might be up for a trade? Sending hugs... Granni B

SewBears profile image
SewBears in reply to

Not a silly question at all. I’m keeping my options open. It would be easier if I knew what I was looking for 😂

AliBee1 profile image
AliBee1 in reply toSewBears

I agree. They are a horrendous price and are out of the question for us unless I get the funding we were turned down for. IF he has to go into one I want him to go to where he has day care as although he has CBD there is a man with PSP there now so they have knowledge. Its more expensive though and I know there will be a fight.

Aprilfool20 profile image
Aprilfool20 in reply toAliBee1

I’m dreading the day we have to start fighting for my funding here in the UK. Care homes are at least £1000 per month and care at home not much less. The NHS is at breaking point now. I would willingly pay a bit of extra tax provided it was spent on social care and not frittered away, pigs might fly!!

Dickenson2 profile image
Dickenson2 in reply toAprilfool20

Try £5000 per month that is nearer the cost x

Aprilfool20 profile image
Aprilfool20 in reply toDickenson2

Sorry!meant £1000 per week!x

AliBee1 profile image
AliBee1 in reply toAprilfool20

Agree. My Mum's was £1250 per week. She chose to move into one when Nigel became ill as I could no longer just jump in the car and rush to her aid. We had one day when she managed to get to the phone having fallen at precsisely the same time that Nigel had fallen and my Mum's neighbour got a very odd phone call as I just phoned and said 'Mum has fallen and somehow got stuck between the TV and her chair and Nigel has fallen and knocked our TV over. Can you rescue her please?'. AliBee

enjoysalud profile image
enjoysalud in reply toSewBears

I live in Los Angeles, CA, USA. Being a caretaker is difficult AT BEST. Then, with voters in our country, USA, voting against candidates who support universal health care, there is light at the end of the tunnel...no support. I was so grateful to Pres Obama when my son lost his health insurance, at least there was ACA which did not penalize him for having a terminal pre-condition.

If you are rich you can hire a lawyer to rearrange assets of the PSP loved one so that they qualify for medicaid....which is different from Medicare, or wait for bankruptcy.

Care-taking is relentless....constant sleep deprivation, little rest, watching the decline of the loved one, no respite (unless you dig into your savings). I MISS MY SON TERRIBLY, what I don't miss is the worst of the care-taking...as PSP progressed.

I am happy to live in the USA, as all countries we have our shortcomings, but I often felt jealous when I would read of the perks afforded to my fellow caretakers across the sea. Yes, I know they come at a cost of higher taxes, but I would gladly pay higher taxes so that ALL OF US would have the help we need.

bazooka111 profile image
bazooka111 in reply toenjoysalud

I so agree with this post!! 🙌🏻 ❤️

AliBee1 profile image
AliBee1 in reply to

I agree. Nigekl is atrocious in hospital for that reason !!!!

Dance1955 profile image
Dance1955

AliBee1 I hear you it’s so hard when your the maintenance man too isn’t it

I used to give my husband one part of a doorbell to ring and I’d take the other part with me in the garden sometimes in my back pocket

(Up my arse ) lol but I took it away and told him “you got the Nobel prize award “no more bells”

We can laugh but it’s not funny at the time is it AliBee1 take care 💞

Dance55

AliBee1 profile image
AliBee1 in reply toDance1955

Thank you for your reply. It made me giggle. Also reminded me of many years ago when a dear little lady came to have her feet done and shins and feet were very bruised. I asked he what was had been happening and she told me that she had had a mild stroke so I asked if she was subsequently falling to which her reply was 'Oh no, but my husband is in a wheelchair'. This made no sense so I had to dig deeper. It turned out that before the stroke she was able to move out of the way when he was on the move but after the stroke she was not quick enough. I jokingly suggested that she should buy a bicycle bell for him to use like the vans have when they are reversing. Two months later she returned with no bruises. 'That bicycle bell worked an absolute treat. Thank you' were her first words !!

AliBee xx

Dance1955 profile image
Dance1955 in reply toAliBee1

Ah aliBee that poor lady there’s always someone worse off isn’t there 🥴

Tillie281 profile image
Tillie281

I live in Australia.

We can get four levels of financial support for looking after our loved one at home instead of letting the government pay for a permanent stay in a nursing home.

Level-1 Low care $3000.- Level-2 $13000.- High care level -3 $30,000- (until money for level 4 become available) Level - $50,000 a year.

I get Level 3 and use most of the money to pay for carers to give me time to get respite.(I go and play table tennis 2 hours 3 times a week).

Last month, I asked if there was a way to learn simple massage to ease my wife's cramps in her leg. Yesterday I got a whole day's instructions in how to massage. All courtesy of our health system.

Once a month my wife goes in a nursing home in order to give me a break.

I write this letter as a way to say thank you to our marvelous health care system.

Dance1955 profile image
Dance1955 in reply toTillie281

Hi Tillie281 me too I live in Australia my husband has PSP he has level 4 Package he is very dependent now on me but I use my package money to let him go to the day centre they pick him up 3 times a week I get a break but I do all his personal care so we can pay for it but yes I am so grateful for the health care and assistance I get I couldn’t do it alone

Take care

Irene

Tillie281 profile image
Tillie281 in reply toDance1955

Hi Irene great to hear from someone who knows what it is all about.

Sometimes I feel like the world is full of well willing ignorants.

This is my Email address tdb281@gmail.com

This way we can exchange info in a more personal way and also direct and fast.

Hang in there Irene.

AliBee1 profile image
AliBee1 in reply toTillie281

How lovely to hear praise. I am so glad that you have been able to get the help that you have required and congratulations on becoming your wife's masseur. Your wife is very lucky to have you. X Not sure this went through as a reply to you last time so sending again AliBee

AliBee1 profile image
AliBee1

How lovely to hear praise. I am so glad that you have been able to get the help that you have required and congratulations on becoming your wife's masseur. Your wife is very lucky to have you. X

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