Mom with PP MS dad is her carer

I am looking for some insight please. I’ll try to be concise.

My mum has primary progressive Ms and dad is her carer. There has been a Steady decline over the last 10 years. She is bed bound with various complications that comes with the condition.

my parents are 70.

I see the condition has hugely impacted both of my parents. It’s the nature of the beast isn’t it!?

My dad is so proud, he struggles to ask for help but we are at a stage where he needs respite.

how does respite work for ms sufferers? Mom needs 24 hour care.

How can we sell it to her also as she’ll probably not want to go.

things to avoid or know?

anyone been in a similar situation at all?

thanks in advance. A worried daughter x

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Hi, I empathise totally with you there as we were in the same situation around 2004/5. I was my mum’s carer (she had ppms), as was my dad, and thankfully, I think while at the hospital, it was mentioned that we should qualify for respite care - for mum alone or mum and dad together. I can’t quite remember which path we took but I believe, if your local authority has provision for it, your dad can have a carer’s assessment (or your mum as the patient) and, all being well there are some amazing places where they would both be really well looked after according to their needs … and still be able to be together. I think, with your dad being the main carer, and your mum being bed bound, you should certainly qualify for help

I do remember no-one thinking it was a good idea at the time, but something like that was clearly necessary and I’m pleased to say, neither could stop saying how nice and restful it had been afterwards, and how helpful everyone was!

I do hope they still do that sort of respite care and wish you all the best x

I actually thought this site helped people with PPMS. It is classed as the MS society, with millions raised by charity. I’m quite sure your mother & farther would qualify for help.

I personally have PPMS & do everything myself. It’s resulted in all my savings being stolen & abuse from strange people. I couldn’t believe, there is even jealousy of diagnosis, time span & severity. It’s shameful behaviour.

Perhaps you should act on your elderly parents behalf. The older generation, can be too proud to ask for help & there are a lot of vultures out there. It’s a confusing mine field of information & there are many MS organisations stalking patients.

I’ve personally been bombarded by dozens, with zero help. It’s comical. The best person to start action is yourself.

There is access to mobility & the blue badge scheme. Some folks use this to their advantage.

I wish I could help. You are the key to make things happen. Act of their behalf & take care.

Treat your folks to a cheap fan. Staying cool is paramount.

Contact PiP or the .GOV website & see where the rabbit warren takes you.

Best regards Terry

Hi, I have been in the Social Services system for a lot of years and have found them to be so helpful.My hubby was my sole carer for 11 years, before we asked for an assessment. He insisted it was his job to look after me. But I wanted different. I am a full time wheelchair user and am hoisted too.

If your mum was hoisted, she wouldnt have to be bed bound. Like me, she could be in the garden, or different rooms of the house. I got the funds from the council to pay for the hoist.

I now have 24.25 hours, plus 3 nights sleepover a week.

My carer takes me on 3 night breaks, to give hubby a rest.

I know of a hotel in Blackpool and a sister hotel in Llandudno, who do breaks with or without care. They are excellent.

If you would like more info, then please pm me.


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