New to PSP

[Xaiwal]

I care for my mum, who was recently diagnosed with PsP

I work full time from home and have private carers who help out.

From 2016-17 I noticed my mum speech changing , then by 2019 i was convinced something was changing in her, she couldn't recall things, repeated what she said already and got her words muddled up.

In 2020 she saw memory clinic and did a test, her memory was excellent so they said she had mental health issues and wasted 6 months of our time seeing mental health nurse .

I sought second opinion at another hospital and they diagnosed mum with mixed dementia in 2021. Since then to 2023 she deteriorated so fast that she can no longer speak, walk, properly swallow or move her left arm and leg

. I kept telling all the doctors mum needs to be seen by nuerology, it's not classic dementia

and my gut feeling was right. My gp would not refer mum so I took her to private doctor and that's where she in 2024 finally got the correct diagnosis.

Since 2018 I have been taking care of mum, I am exhausted. This journey has another beginning , and i dont know where to begin. Between work , mum and running household i have no time for myself let alone begin another lonely journey.

I am here for help advise and support.

[Sun-flowerwearer]

Hi Xaiwal

I feel the despair in your post. I think the journey is continuing rather than beginning fir you as many early symptoms overlap all sorts of neurological illnesses. It’s hard for experienced neurologists to settle on a firm diagnosis and even then they cannot say 100 percent until an autopsy is done.

You’ve had 7 years of caring already. So hard for a young person to put their lives on hold for a parent. Love is so demanding. It’s important to have as much help in place as possible as it’s a 24/7 1:1 illness at its advanced stages and in most cases it’s husbands, wives, children picking up the bulk of the care hours. I see you have carers but you don’t say for how many hours a day. In the uk the OT will provide all equipment you need free of charge but it’s the human involvement that’s the hardest part. Carers are hard to source and expensive as you know. have my husband at home with me but I do understand anyone that seeks a care home nearby to take the strain.

Social workers, GPs, OT’s all may be able to advise what help is available in your area as it seems to vary depending on where you live . Ask questions here… read past posts as there is tons of advice and answers to be found.

[Bergenser]

Hi Xaiwal, I'm sorry you and your Mum are in this situation. With a diagnosis, hopefully some things will become easier. There are lots of things to deal with, I'm not the right one to give you a list, but with this forum you're in the right place.

I did ask the local council for an assessment of my needs as a carer (for my husband). Though it took time to get through to the right people, in the end I got help to 1) set up the emergency plan i.e. which people should be called upon if I was unable to provide the care, and 2) a lump sum of funding for me to get out a few hours a week. It might not be a lot but I found it a big relief to have 3-4 hours a week when someone stays with my husband and I can go for a walk and see friends without guilt. Looking after yourself is vital.

Wishing you strength and hope. 🌻🤗

[Kelmisty]

Similar situation here, Mum has PSP and CBD, I work full time and care for Mum with carers helping. 2.5 years on and still doing it - whilst she gets worse but refuses to go to a care home.

I have no tips at all as I feel at breaking point most days. None of the service’s particularly help just give advice but it all falls to me to arrange, sort, complain, do things I’d never want to do for my Mum.

Feel free to message me for support if nothing else, I really feel your pain.

[Araucana]

we are pretty much the same. Mum diagnosed in 2020 but the alien hand symptom was well established at that point so she had CBD before then. She moved in with us in April last year as she was having too many falls and struggled on her own. Now she needs us to get her up, get her to bed, help her eat, etc.

My husband works from home most days and I am in office for two, luckily at the moment my adult daughter is staying with us and she helps out. We all feel exhausted as the dementia element has now kicked in and the anxiety that comes with it.

Seeing Dr Rittman in Cambridge Clinic in a few weeks so hoping he can help with mum’s erratic sleep and the anxiety.

Keep strong, one day at a time I say.

Andrea