PSP Association
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Family caring for someone with PSP

My father was diagnosed a year ago, but had symptoms for up to 7 years prior. We are encouraged that this seems like a slowly progressing one.

Mum lives with dad as his sole carer, but he can still walk about and make a cup of tea.

We know things will deteriorate, but no idea when. Im concerned about the impact to mum who is also not in good health.

My family of four (husband and 2 v young kids) are thinking about moving in to help.

I work from home part time so can be on hand if needed.

Keen to hear your thoughts on this plan. Can we help or could we be a hindrance as he will need a professional?

TIA

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Dear Joanna, welcome, but sorry for the need to welcome you!

Your sheer thoughtfulness shines through, but this is my opinion, for now, be on hand as and when you can, but then please look at getting carers in.

Why do I say this? I’ve been there and got the t.shirt, thinking I was superhuman and could cope, just me and Mum (another superwoman) caring for Dad, sadly we couldn’t and my dad is now in a nursing home.

I don’t mean my reply to be harsh, I think your idea is truly lovely, but I think you also need to consider your kids and husband too.....

That’s my take on it, let’s see what the others say x

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Hello there.. I cared for my Dad with psp for 2 & 1/2 yrs, I didn't live with him but went up daily. He was very independent & capable to begin with, falls were more of a problem than anything. It was emotionally & physically exhausting. I didn't want him to go into a home so that's why I did it, eventually we got morning & eve carers in and then due to episodes he moved into a home for four mths before he died.

In retrospect I would have got carers in earlier & had more time off. Dad wanted me to move in but I had to say no as it would have had a huge impact on my family.

Get lots of help before it gets too much. It'll be easier for your mum to get used to the help before she really needs it.

Hope that wasn't too long winded.

Xx

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I nursed my husband at home until he died.

The most stressful aspect was his impulsive behaviour and consequent falls and difficulty in communicating, plus incontinence issues. It is more exhausting and time-consuming than you can imagine.

It would help for you to be close but I personally would not think it good to live in if you have small children and a job. Look for support for your mother. I needed someone I could trust to care for Chris whilst I had a break !!

love, Jean x

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Hi Joanna8,

I think the recommendations of this group shall be useful. This group is solidary, admirable and generous.

By internal and personal mail I will send our experiences in these 6 years of living with PSP from where I hope you can analyze and perhaps find some practical ideas.

Hugs, luck and courage.

Luis

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Hi Joanna

Everyone is different so it's a difficult decision to be sure.

My experience of caring is that if you are on site you will have a lot of interruptions which will increase as your fathers condition deteriorates.The effect on me of frequent interruptions was that I became 'distracted'. That is I ended up listening for calls for help and such and even sitting down and getting through some basic accounts work became difficult at times.

You have children to cope with as well.

Were I in your shoes I might try to live nearby so that my family got 'family' time and focus, but where I could pop over quite easily.

I would get my Mum extra support from carers too. Your Mum needs breaks even if she is coping well she needs time out.

These are just thoughts. I hope they help a little.

Best

Kevin

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Hello Joanna I cared for my hubby at home without help until he died in December. I was totally worn out and so for the last six months of his time I had to admit defeat and had double up carers in 3 times a day. I personally believe that should you move in with your parents it will be a huge impact on your family especially with two little ones. Others will agree I am sure that PSP is totally unpredictable and complex and can change overnight. Of course be there for your all your family but take a step back and consider the implications. Apologies if you think I am interfering but those of us that have been there know the daily challenges. Hugs to you Jxx

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Hi Joanna

I hope you will be able to decide what is going to be the best for your family xx

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I am caring for my husband at home. I can't begin to imagine how it would be if I had someone else in this house - I don't know your mom, but, moms feel like they need to take care of everything and your mom would want to be taking care of you and the kids, too. You would all be bonkers 😜and stress for anyone, including your dad is not good. I have a routine and I am managing ~ But, I cannot manage anything else. If your mom has health issues, take care of her and get her some help IF she's ready for it. The best thing my kids can do for me is bring already made dinner and keep in touch with me. Texting works😄 I always tell them- "Take care of me!!! Cuz if something happens to me, you get your dad!" P.s. I live for the precious moments I get to myself - for me, having , say my daughter and her kids move in would not be good thing. I am so lucky to have my three kids, 50,47, and43 living close by and just the right amount of helpful for now😃

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Also sounds like you have great head on your shoulders🌺

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