Up til the start of this year, my disabled (multiple epiphyseal dysplasia) 64 yo Mum had been incredibly independant. All this changed when she had a thoraccic myelopathy which left her unable to stand or walk (spinal compression). Taken into hospital and operated on and given rehab for four months.
She can stand now but walking is out the picture at the minute as rehab took the last of the cartilege in her knees and hips. She is in so much pain all the time. She has carers in in the morning to help dress her but i’m having to get up earlier to get her in the bath due to them not having time to allow her to bathe herself at her own pace.
I can deal with this , but its when she has extreme bouts of pain i’m really struggling. It’s so awful seeing the person you love the most and have lived with all your life being in absolute agony. NHS24 has been nothing but frustration, asking a million questions any time you want to phone. Since COVID hit, the GP surgery has been an absolute nightmare. My mum has a new doctor who she hasnt even met face to face and cant really grasp my mums conditions.
I’ve had to take time off work when she’s in so much pain as she couldnt cope on her own. I feel like i’m at my wits end and i’ve only really been at this since she came out the hospital in August. Is this my life now for the rest of my days? I’m still trying to juggle a full time retail job among this and although they are very understanding of the situation I know I cant keep taking time off.
Like I said, she is very independent and likes to go out but she cant use toilets herself when shes out and only at home since she needs a step (disability leaves her of short stature). I cant afford to get her a PA and dont know if there is any help available or who to even contact. If it helps, I live in Scotland (Glasgow)
The bath issue needs sorting out and a proper solution found.
Do I guess there is no shower facility. What is the long term prognosis are people thinking Mum will improve. Reading through your post it sounds it’s long term.
The hospital arranged the current care package. Is there someone else I should be contacting also? We are STILL waiting on Occ Therapy Home Assessment and I have no idea who to speak to for chasing this up. Mum much prefers a bath to a shower as the soak really helps her pain. We’re not sure how long this is going to last. Mum is on a waiting list for hip/knee replacement as we thing thats whats causing a lot of the pain but as well know, the NHS is up shit creek at the minute and I have no idea how long that will take.
I have had both hips done and can empathise with your Mum’s pain. I totally get how a soak in the bath helps.
Although movement is difficult and hurts even more when stiff, moving will also help with the pain once the initial stiffness wears off. Passive movement, where someone else moves her legs for her will help the stiffness.
However the more her muscles weaken now the poorer her mobility will be after her op. Is she still having physio? I used to find hydro the best (though could only have it in blocks of time.)
A referral to the pain clinic may be a good idea so that her pain is better managed.
Re referrals to OT - check they have actually been made, by ringing the OT department to check they have received the paperwork.
I had a bad car accident in 2006, when I was 54. It ruined both my knees - I’d been a keen walker all my life, led mountain walks in Switzerland when only 18, so this was a terrible blow. Every step was SO painful, but I as advised to wait as long as possible for replacements, because of my age.
I was always most comfortable not in bed, but in a reclining chair. If you don’t have one already, I would suggest getting one. My mum had one provided by the OT department of Social Services. I’m dismayed mum wasn’t sorted out with aids to help her.
There is a really solution to bathing too. Mum had an “Archimedes” bath lift. Even when terribly disabled, still at home, she could enjoy her daily bath.
Go to your LA website, search for Adult Services Complaints, and complain about lack of Needs Assessment, Care Plan, OT visit and Carers Assessment for you. Say they need to be done URGENTLY.
Physios told her to stop doing her sit to stand exercises as it was causing too much pain then said there wasnt much point in them visiting and to call back in January. I will definitely try doing some aided stretching with her if she’s up for it. We did get a repsonse from the OT dept but it basically said there is an extremely long wait list. Fortunately we did get equipment supplied by the hospital before she was discharged (electric bed, steps, Archimedes bath chair as suggested in a post below)