Conerned about my mums health, no treatment options left. [osteoporosis]

[I put copd and mental health for tags as osteoporosis is not available on the list]

My mum has a severe curvature of the spine which has caused her many issues but more recently it appears to have been affecting her breathing and eating much more acutely. She is making a unusual kind of “panting” sound, almost like a strange new mannerism she’s started doing, but like you’re out of breath. Her bowel movements have been a bit all over the place and after a night when she had a significant event, night sweats and headache and feeling sick, she called the GP and they ordered a poop test. It came back that she has blood in the stool and they want her to do a colonoscopy and/or a CAT scan. She is extremely concerned about doing either, her back is very fragile and frankly she is getting quite frail. She saw the consultant rheumatologist today and he agreed either procedure would probably not be advisable for her, but suggested the alternative of not detecting cancer/other issues could be worse.

I’m pretty worried that this is the beginning of the end as no further treatment has been recommended, and the consultant even suggested signing her off his books next year unless she has any further fractures. Is there anything I should be doing? Is it a case of just making my mum as comfortable as possible from now on? Besides that, it’s taking a toll on my mental health seeing her suffering and struggling, I have no one to vent to.

This seems a hard one to decide on the best course of action. It might be worth speaking to social services and asking for a visit from the community OTs and physio about your mum. She might need a hospital bed and extra support and help. See what they say and decide then, it might be time for her to go into a care home?
I am surprised that the GPS or the specialist can’t offer better or more advice.

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I gave my mum the choice of me coming in to the consultant with her and she preferred to go in alone, she feels like she can concentrate better so she says. From what I can tell it feels like they’ve drawn a line under her treatment.

I must admit I’m a bit concerned going to social services. I don’t know much about it at all, but I worry that things may be taken out of our/my control? Things are going to need to change soon, no doubt, but my mum is very resistant to going in to care, she wants to be independant as possible for as long as she can. Do you have any experience with the social services?

My mum was diagnosed with osteoporosis but was later diagnosed with DISH, diffuse idiopathic spinal hyperostosis, so bent in the end that some of her records said she was 5 foot 3”, staff were shocked when I said she was almost as tall as me, 5ft 10”. Mum had some other issues and her last year in a nursing home was tough. The more help mum has the longer she can stay home. Mum should be entitled to DLA and needs a Care Assessment from Social Services, and you, a Carers Assessment. Sort out Power of Attorney. How old is mum? Does she own or rent her property? Have over £23,000 in the bank? Just yes/no is all we need to know. Where do you live, with mum, nearby? Any other family?

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My involvement with social services has been mixed but the community OTs are very good and would sort things out for you, also what BB has said as well I would recommend the same.

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I forgot to say earlier that my mum only accepted carers after I’d just had major cancer surgery and was told to never care for anyone ever again. Finally the realisation that it was either carers at home or residential care made her opt for carers. Mum actually enjoyed them helping her, hearing about what their children were doing, etc. it’s probably best if the carers start by doing domestic jobs like cleaning, tidying etc first, under your supervision, if possible. How this is paid for depends on mum’s finances and benefits.

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I’m very sorry to hear about your mum. That sounds hard, I can only imagine but I fear I’m going to be living this soon myself. I fear for her when she goes into care as she has always depended on me and doesn’t communicate her needs very well.

I thought that we can’t claim DLA any more? Doesn’t it stop at a certain age? She gets pension credit, and I get carers allowance. I already have Power of Attorney, I’m 99% sure but will check. She does not have that much in savings. She lives with me and I own the property. No other family, sadly.

Sorry, I’ve been ill this week, not enough sleep!!! Which disability benefit mum is entitled to depends on her age when she applies. Under pension age, new claimant, PIP, Personal Independence payment. Over pension age, new claimant, AA, Attendance Allowance. Disability Living Allowance being phased out.

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Hope you feel better :heart:

Thanks, my own health isn’t wonderful, I’ve caught a bad cough and cold, so more or less “confined to barracks” until it goes. I stink of a mixture of Olbas Oil, Deep Heat and Vick!
I forgot to ask if mum has been given any medication to prevent further bone loss?
Also realised afterwards that as you are claiming Carers Allowance mum must already been getting a disability benefit! Sorry again!

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No worries! I hope you’re feeling a bit better.
Yes she takes a few medicines, I can’t remember exactly, prolea, I think. She is under the rheumatologist and has had DEXA scans and so on, it’s just at the stage where it’s so advanced I don’t think there’s anything they can do.