Cbd: Partner just been diagnosed with Cbd... - PSP Association

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Goldfish43 profile image
20 Replies

Partner just been diagnosed with Cbd after 2 year of hospitals and doc appointments .my concern is that I work all week and worry about partner being alone at home .I have to dress her make meals for the day .she cant make phone calls or use remote for tv etc. For myself get very tired. As soon as i get home from work ist all starts again with chores and meals and bath times .It's beginning to take its toll on my health .As I want to be home looking after my partner I cannot afford to give up work .my question is that is there anymore support for me to say at home ?

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Goldfish43 profile image
Goldfish43
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20 Replies
Helen119 profile image
Helen119

Can you let us know which country you are in please

Love and hugs to you xxx

Goldfish43 profile image
Goldfish43 in reply to Helen119

The UK

Helen119 profile image
Helen119 in reply to Goldfish43

Does your wife get benefits PIP, esa, and you could claim carers allowance but only £260 per month, housing benefit if you have a mortgage they may pay the interest every month.

If you have a social worker helping you with aids to help your wife they will explore the benefit system and help you see what you are entitled to.

Hope this helps a little, I know it’s a very hard decision to make to stop working and care for your loved one.

The only other thing I can think of is to see if you are entitled to have carers into your wife through the day paid for.

Perhaps someone else will come up with some ideas for you.

Love and hugs xxx

Goldfish43 profile image
Goldfish43 in reply to Helen119

Thanks for reply Helen119. Just started the process for pips as I'm new to this .will have to wait and see what turns up

Helen119 profile image
Helen119 in reply to Goldfish43

Good luck xxx

SewBears profile image
SewBears

I’m sorry your partner has CBD. Mine does too. I live in the US so I’m afraid I’m not any help re financial support.

I can share that I found myself in the same scenario 7 months ago. I think I came close to a nervous breakdown trying to make a decision about what to do. I finally just bit the bullet and quit my job to attend to hubby’s care full time. I didn’t even give notice at work that I was quitting (first time in my whole life that I ever did that). The company that I worked for was very supportive and they even extended my health benefits for an extra month, even though I wasn’t working. Now I risk not having health insurance for myself since the one month extension came and went. Life in general is less stressful for me to be home with him and I feel healthier than I did when trying to juggle everything.

As for finances, we’re making it work. I’m not entirely sure how I’m pulling this off because hubby was in charge of everything before he took ill. I’m just taking it one day at a time. There are things that I’d like to do but can’t because of a very tight budget, but so far... no one has had to pull me out of the gutter (yet).

Hubby and I used to joke when we were younger about living in a cardboard box. We said it would be okay as long as we had each other. I hope we don’t end up eating our words.

Honestly, quitting my job was the best thing that I ever did! I hope that you find this helpful?

Xoxo from I SewBears

enjoysalud profile image
enjoysalud in reply to SewBears

I live in Los Angeles, Ca, USA. My son had PSP, died May 4, 2017. He was working as a math teacher in the Los Angeles public school system. He had put in 9 years when his symptoms first appeared. They got worse. He inquired about retirement and was persuaded to apply for DISABILITY...which he received. I was told (I am his mom) by Hospice social worker that he was not eligible for social security disability because he had CalStrs Disability. For some reason I ignored her advice and applied for him. He was granted SOCIAL SECURITY DISABILITY. Unfortunately, the approval came after his death.

BTW, Disability does not pay for medical insurance. That we paid out of pocket thro the ACA (Affordable Care Act).

Have U tried every avenue of economic help? Even if you are managing, it's nice to be able to have more income to hire part time help.

Los Angeles, CA, USA

in reply to SewBears

Good Morning Sew Bears,

I have a little suggestion about about the Cardboard Box

Joke... Please Say,

"CANCEL & NEUTRALIZE UNIVERSE!

PLEASE & THANK YOU..."

A dear friend makes me say this... when my words take a turn towards the negative. LOL

Sending Hugs... Granni B

SewBears profile image
SewBears in reply to

Hi Granny B,

I feel your hugs, you say the nicest things!

When my kids were growing up, if I’d hear them say anything negative, I’d ALWAYS make them say something positive immediately after. I hope this helped them to be more appreciative of things.

“Cancel & neutralize universe. Please and thank you”. I shall work on that. Thank you!

Xoxo

AJK2001 profile image
AJK2001

Agree with Helen, need to see what benefits you can get. Other thoughts - can you reduce your work hours? Could you work some of the time from home? Would working compressed hours help (ie 10 days hours over 9 days)? Everyone in the UK is entitled to put in a request for flexible working and your employer has to consider it. Think carefully about what you ask for and maybe sound out your manager first, you are only legally allowed to make one application a year, so you need to get it right.

Also how about getting an emergency pendant, then if she needs help or has a fall you know she can contact someone. It doesn't stop them happening but it takes some worry off you, as you know if there is a problem you will find out right away.

Kaka1234 profile image
Kaka1234

My husband has CBD, I had to finish work to look after him. I didn't want to wait until he was really poorly to stop work I wanted to spend quality time with him whilst he is mobile.

It's a scary thing sorting the finances out but you will get their, if you get in touch with the PSP assatioation they will arramge someone to visit home and fill all the relevant forms in. We were entitled to PIP, ESA and carers allowance. They is help so you can be with your lovely wife xx

SewBears profile image
SewBears in reply to Kaka1234

Kaka1234,

Everything you said is exactly what I went through.

“I wanted to spend quality time with him whilst he is mobile” was also my motivation for early retirement.

Xoxo

Kaka1234 profile image
Kaka1234 in reply to SewBears

Hope your enjoying your retirement as best you can, I'm 48 and hubby is 58 it's hard to juggle everything as we hv a 14 year old daughter too.

So hard to please everyone xx

SewBears profile image
SewBears in reply to Kaka1234

Oh boy! So young! I’m 62, hubby is 64.

I don’t know how long my love has had this disease or even if we have the right diagnosis. He started fainting (blood pressure issues) way back in the year 2K. He broke his neck from fainting in 2005. What can I say, “he’s a trooper?”.

We do the best we can with the cards we’re dealt. Best of luck to you and your family. I hope that you can find a way to work from home or something. I’m so sorry that you’re going through this. I wish I could offer more help.

Sending hugs...

Beads0122 profile image
Beads0122

Goldfish,

I am sorry that we are welcoming you to this site, but I’m glad you have found this site. Although there is a wealth of information on government support/medical help from all around the world, I found the emotional support from the lovely people here to be the most beneficial.

I too found myself in a similar situation with work and caring for my wife with CBD. It was getting where it was unsafe to leave her alone. I was afraid that she would be unable to get out of the house, because she couldn’t figure out how to unlock the doors. We tried home health aids, which were costly and she didnt always feel comfortable with them. Her dear friends would stop in occasionally, but that would not completely address her care. It came to the point where I needed to retire early to provide full time care. It was exhausting as you mentioned.

Take care of yourself. You will be of no use to your partner, if your health fails. Her friends would have coffees with her and give me a couple hours to take care my personal errands. It is also okay to vent on this site when the stresses and strains of caring for your loved one seems to be beyond what you can handle. You will be amazed by the emotional support that you will get from the friends who monitor this site.

Lastly, cherish the remaining time with your partner despite the stress and exhaustion. My wife passed last summer and I miss her. I know she is in a better place now, but I miss her companionship, her presence. I found the rate of decline with this cruel disease to be very rapid.

Prayers of strength, comfort, and wisdom coming your way from me,

Bobby

Good Morning Goldfish, as Bobby & many others on this site have learned... it is most important to take care of yourself as well as your partner. You have found a lot of supportive folks on this site. Visit as often as you need.

Sending hugs to you & your partner. . . Granni B

Tippyleaf profile image
Tippyleaf

Dear Goldfish

Welcome but sorry you have had to join us. I reduced to working 3 days per week, term time only, as my hubby (PSP) health deteriorated. It is a struggle and like you have to hit the ground running as soon as I get home. Personally I need the time out of the house away from my husband. But it is getting tougher. It may be worth reducing your hours and seeing if that helps. Is there a local Hospice where she could spend one day per week?? Speak with the GP about referring to palliative care. Finally look at CHC funding - this is not means tested but it is a bit of a postcode lottery. Hope you can find some sort of balance

Please take care of yourself too

Love Tippy

Goldfish43 profile image
Goldfish43 in reply to Tippyleaf

Hi.thanks for reply.like myself need time away from the wife. It's just that I think she will need full time care in the near future. But for the short term that's probably the way .Thanks again for the support.

Marie_14 profile image
Marie_14

You are definitely entitled to financial support and aids to help your wife. You are probably also entitled to carers to come and check on her as you are working.

Someone mentioned a pendant which is a good idea. You can also get a wrist one which alerts them if she should fall. So I would approach your local council if you haven't already done so.

The local hospice is another source of support. They can arrange for her to go there once a week for a set number of weeks. She will meet others and get a very nice meal. If you could have that day off work it would allow you to shop, do the housework or whatever you want to. They will allow this again after a set time is up.

I think you will eventually have to stop work to care for her so try to save what you can for that day. You can get carers a couple of times a week to sit with her for a couple of hours each time which will help you escape for that time that's in addition to carers who could come now to help with food or whatever she might need help with.

For now take care of yourself and the best way of doing that is asking your council for help, and your GP and Hospice.

This site will support you along the way, and you will need that too. Everyone is so kind, and there is a lot of experience here to tap into. When your wife is very ill you will be entitled to CHC funding but that's another story!

Marie x

greelycat profile image
greelycat

The day before my husband passed, I had let work know that I would be requesting a leave of absence. Wish I had done it sooner. In Canada we can get about half our wages while on leave and can come back to our jobs within three months. (don't hold me to that, it is a general understanding)

The decisions we have to make are so hard, always second guessing ourselves. Trust your instincts. Best of luck.

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