Experience of CBD and Alzheimer’s? - PSP Association

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Experience of CBD and Alzheimer’s?

bichonbear1 profile image
6 Replies

Hi Everyone. I have posted a couple of times on here. My mum is 68 and has CBD. Mum has also been diagnosed with Alzheimer’s alongside the CBD and cognition and memory are very poor. Mum can’t really do anything for herself now sadly and is immobile and has double incontinence (just to paint a picture of stage). Luckily swallow and appetite ok at the moment. Mum is going through a stage of severe anxiety and as a result spends a lot of time crying and does not sleep at night, chattering all through. We have support of a local hospice but night sits aren’t regularly available so Dad is shattered. Has anyone else experience of this and if so, any guidance or advice would be great or do we just have to bear through and manage as best we can? It has been going on for weeks now. My sister and I will be looking after mum for 4 days next month so dad can get away and stay with family for respite. It’s just if there is something we haven’t tried that could help. Alzheimer’s on top of CBD is challenging and very upsetting for us all. Thank you for reading.

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bichonbear1
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Northstar1 profile image
Northstar1

Hi I read your other post 're CHC . Did you have a DST meeting ? Or was it the initial tool you completed that was declined ?. Did a professional complete the initial screening with you ?. I strongly suggest you ask your GP for a Community Matron referral they will be a massive support.

bichonbear1 profile image
bichonbear1 in reply to Northstar1

Hi There, many thanks for replying. It’s been an interesting few months on this subject. Once we made contact with a hospice and they have been supporting us and mum (they have been brilliant) they made sure district nursing took the situation more seriously. We were struggling to get support from a district nurse. Both the hospice and district nurse recommended CHC fast track which went through very quickly. This has been in place now for about 2 months. We have a review coming up soon which is unnerving.

daddyt profile image
daddyt

Very sorry to hear about your difficult circumstances. Anxiety, depression is part of the baggage with this disease. The crying may result from PBA - Pseudobulbar Affect... again, related to the disease. Alzheimer's isn't usually associated with CBD, but not entirely out of the question. The dementia experienced with CBD-PSP falls under the umbrella of FTD- Frontotemporal Degeneration. Alzheimer's has some diagnostic tools to assess the disease more accurately. Either way, you have your mother reassessed to get the proper supports in place.

bichonbear1 profile image
bichonbear1

Thank you for replying. The neurologist used the word Alzheimer’s when he assessed mum back in early March. I don’t think we will be able to get mum assessed again as she is now immobile and has to be hoisted between armchair and bed. The carers move mum into the armchair at the lunchtime visit and back to bed at the evening visit. Mum caught Covid mid March and things deteriorated significantly unfortunately.

bichonbear1 profile image
bichonbear1

Sorry…also, the crying is associated with how mum feels. Mum says things like “I don’t know what’s wrong with me”…..”I want it to be normal”…..”I don’t understand what’s going on”. Even though mum knew her diagnosis for over a year before now she doesn’t remember what is going on and happening. It’s very distressing.

DoingwhatIcan profile image
DoingwhatIcan in reply to bichonbear1

I just wanted to say I'm so sorry - it's hard enough dealing with/explaining the diagnosis once, let alone having to repeat it over and over. I hope you find some way through. We have occasionally managed to get respite care in a nursing home for my dad - but again you have to fight for it and really be at your whits end - which you probably are! Ask the palliative care team to help you fight for this...

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