diagnosis cbd and psp

[Karen1981]

mum has been diagnosed with CBD and PSP. We’re heartbroken. At least we can get some proper advice and help now but it doesn’t make it any easier x

[Kelmisty]

My Mum has CBD and PSP, she’s 71. Feel free to ask questions. X

[Karen1981 in reply to Kelmisty]

Ty x

Sorry to hear your going through the same x

How does your mum get looked after if you don’t mind me asking x

My mum lives alone (currently in intermediate care following hospital admission) I just don’t know what to do for the best. I can’t not work as I have bills to pay or would move her in with us but trying to do both would be too much.

She wants to return to living on her own with support rather than a nursing home and we had thought about a level access apartment with an electric chair

Any advice or tips are welcomed x

[Kelmisty in reply to Karen1981]

Well, Mum is estimated 7 years into her journey. She was diagnosed just over two years ago.

I moved her to a extra care flat two years ago it started with 4 care visits a day, with me doing shopping, sorting, picking her up off the floor when needed too, this increased over 18 months to being left alone for 3 hours a day, even then the falls were happening and I was working full time. Mum had the electric chair, walkers, carers but couldn’t be left alone- all the time she could walk she would even when it resulted in a fall. I was advised all the time she can stand she will try to walk and fall. As they have no risk filters.

Last summer, we needed up move mum to a nursing home, I couldn’t cope anymore. Looking after two homes, working full time and every emergency/issue falling to me I was exhausted. I had to refuse to accept her back into my care to get more support as they couldn’t discharge her without appropriate care in place.

Mum never wanted to go to a nursing home, but the combination of two illnesses means she needs 24/7 supervision, she hates being in a nursing home, understands why. But even in the last six months her needs have increased greatly,, she can’t walk without two people, speech has decreased significantly, her hand is a full fist all the time, her left leg is a phantom limb, she can’t write or read well anymore and can’t speak at all some times, she has had numerous UTIs, as she struggles to drink enough due to coughing, she’s had a couple of scary blood pressure drops, struggles to toliet and has some pain issues. The positive is that the carers have had time to get to know her more, before her speech became worse which helps.

I go 3/4 times a week and spend time with Mum, rather than the constant stress, running out to rescue her, go to a&e, shopping, prescriptions, feeding and everything else she needed. I know she is looked after and safe, she understands that . The guilt is real, but a friend who died last year on her death bed, who brother has PSP said to me the only way you can help her is to put your own oxygen mask on - she’s right but it’s hard. And unfortunately it just gets worse.

I would ask about CHC funding for her care, she should be entitled for it, but it’s not easy to get and can be a battle.

Xx

[Karen1981 in reply to Kelmisty]

Wow

That’s really good advice x Ty for sharing x we sound to be sharing a lot in common. I’m currently doing as much as I can shopping, washing, cleaning , appointments and at the moment visiting every day or evening. It’s just me and my husband as my brother lives overseas and her sister helps with visits and was taking her for a stroll twice a week. It sounds like you’re doing amazing and it’s very helpful to hear from someone in the same situation. We haven’t tried with an electric chair yet but think that would be next thing and to look at level access living with carers which I hope will give her some confidence and independence back x

She has been referred to a specialist physio and community nurse so hope they can help too as as livery as the physios, carers and OT are at IC, they don’t understand the complexity but it’s early days. Even after talking today with them they were talking about trialling her with a walking stick.

It really had helped to hear your side and good to know she’s not the only one in this situation and his you have managed. It sounds like you’d doing a great job and whilst it can’t of being easy making the decision of a nursing home there comes a point when it is not viable or safe anymore and I think that’s where I’m battling in my head at the moment xxx

[Bergenser]

I'm so sorry to hear about that "double whammy". It's a lot to take in and you can't continue to hope it's something more predictable or treatable. There is a grieving process that starts today and probably never ends. I wish I could hug you 🫂 and you're right - it isn't getting easier. Still, it's mentioned in the PSP poetry book "today is a good day". The reality of the condition is the same as yesterday, but now you can start dealing with it.

A positive attitude makes a difference.

I recall telling myself that this was not something we could fight, so we had to make the best of our time and energy.

Make lots of memories and be kind to yourself. You're stronger than you think

🌻💪

[Kelmisty in reply to Bergenser]

Spot on, caring for yourself as well as others it’s normally the hardest thing to do. X

[Karen1981 in reply to Bergenser]

Ty

My mum was so upset as she had kind of been ignoring things so if hit her hard x she was saying that half of her thinks she should just stop trying and why her. She is a fighter and all I could say was that we focus what you can still do and what you can still enjoy and now that you have a diagnosis with the proper supports in place you will probably have a better quality of life than recently because we have had no support.

It’s hard because she lives alone and I just don’t know what’s for the best going forward. I can’t afford not to work and it wouldn’t be right even if we moved her in with us and I don’t think I could look after her as well as working

I did think if we could get carers in and assisted living on one level with an electric wheelchair as an option but I just don’t have the answers