Care at home Worcestershire/Gloucestershire border

[DaughterCare4]

My mum haa cbd and psp. She was taken to hospital 10days ago with extreme pains in her legs. This was managed by increasing her gabapentin from 300mg to 600mg. Unfortunatley the hospital did not increase this gradually so she seems to be experiencing some nasty side effects, including extreme tiredness, swelling in her legs and nightmares.We brought mum home from hospital last night as the constant sitting and general hospital environment seemed to be making her deteriorate very quickly.

We (my dad, age 76 and I) are now struggling to cope with mum's lack of mobility at home. Please can anyone suggest carers that will come to the house to help my dad. They live on the border of Worcestershire and Gloucestershire. I have young family so help as often as I can but it is limited. Thank you in advance.

[Kelmisty]

Sorry no advice, but can I ask did the gabapentin work for her pain initially? Mums currently in pain and taking paracetamol, she is the same as your mum and has both conditions.

[DaughterCare4 in reply to Kelmisty]

Yes definitely helped with the pain but at a cost of the side effects. Gabapentin takes approx 3 days to kick in. She was on morphine initially but that didn't cure the pain. I think we need to work on getting the right dosage of gabapentin which you have to do slowly. I hope that answers your question.

[bazley32]

Hi

My sister has end stage CBD and PSP and she has carers that come in once a day to wash her at home. The rest of her care is split between myself and her partner. Contact your GP and ask for a referral to have carers support. My sister has an amazing Neurologist and she made all the referrals for us. You guys need the help of your local Occupational therapists and Neuro teams who can get you access to carers and support aids like hoists, commodes, and a special bed to make your mum more comfortable. Or you could contact your local Social Services adult care team who can also help. The hard part may be getting them to understand her condition in the first place as some healthcare professionals may go their whole career's without seeing a single case of this awful disease. I'm surprised the hospital hasn't already done this though as they must have recognized your mum condition.

If your parents have a collective amount of £23,000 or less then care should be by your local council for free after an assessment by the O.T's. We live in West Sussex and this is the amount they quote and I'm sure its the same where ever you live.

I hope this helps.

[DaughterCare4 in reply to bazley32]

Thank you, this is really helpful. I will pursue this with her GP. I found that the medical teams in the hospital were very unaware of mum's condition. Thanks again

[David750]

Hi DaughterCare4, Iam so very sorry to learn of your difficult situation. I totally agree with Bazley32's advice. Additionally, if you haven't already done so, please register yourself with the PSP Association as they can provide additional support and advice, over the phone, by those who fully understand PSP &CBD. They helped me when I was caring for my wife (PSP).

[Eaton7]

is there a hospice in the area that offers the Hospice at Home service? I had great support in caring for my husband from the one in my area in Cheshire. You would need a referral but that should be easy. They were available for telephone support 24 hours a day, they came to help me to settle him to bed after 18 hours in A&E and they offered a 2 hour sit in care visit once a week where capacity allowed which enabled me to tackle other overdue jobs. It was so reassuring just knowing they were there for support.