Hi.

[Karre]

Hi. I'm new. I care fit my father, age 78, who was diagnosed with PSP last year. Like many he was misdiagnosed two and half years prior. He lives with me and my husband. He has very limited mobility and COPD along with Chronic lymphocytic leukemia so his immune system is weak. Last year he was in hospital battling pnemonia each month for the last four months of the year. I've kept him out of hospital so far in 2018 but have started Hospice for him. Really need the extra care for him. I struggle to do it all. Be a good daughter, caregiver, wife, mother, friend and business owner. So stressed is an understatement. Advice?

[Hidden]

Morning and welcome.

I'm quite new here myself and although I don't post much, I've found great strength from others on here. A strange thing to say but it helps to know you are not the only one struggling.

Throughout Johns journey the biggest obstacle has been professionals not aware of PSP or how best to help. Appointments were taken up with me having to explain exactly what PSP is!!

My only advice would be to keep strong yourself, take time out for you because you need to be able to deal with everything that's thrown at you.

You will find great support here, everyone is so kind and caring and no matter what difficulties you have, rest assured someone here has been there before you and will show you the way.

Big hugs

Sue x

[JA10]

Hi Karre, you sound like you have a lot to deal with, I am also the daughter of a PSP sufferer trying to balance the needs of my mum (PSP), Dad (MS) and husband/children etc. Fortunately currently l am self employed and can fit my work around other things.

I definitely have it easier than you though, as my Dad is my Mum's main carer so I just help with the extra stuff and when one of them is poorly/in hospital. He is in a wheelchair too due to his MS, so Mum has carers in 4 times a day to help with the intimate care. They have a cleaner who also does their ironing, that is one less thing for them to do. (Knowing that once a week their house gets a really good clean, saves me worrying that I need or ought to do it too.)

I hope the hospice care will make it easier, use as much care as possible. Have you CHC funding?

When things go a bit mad here due to one of them being in hospital, my husband really takes over at home. My girls are teenagers so can be left if required, so that helps. However we all know that with PSP being what it is, the situation is not going to last forever. I also have a sister, who, as a teacher can't get out of work easily, but we work together to sort our parents when there is any issues.

I hope things do start to get a little easier, and you are able to have some quality time with your father while he is out of hospital. Julie

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You are doing the best you can which is all you can do.