Fused lower spine and chronic back pain

[Louise_180512]

Good morning,

I wonder if you could help me.

My grandmother had a fused lower spine in her 30s due to degenerative discs and now she is older (70) it's causing her a lot of pain and has spells which are becoming more frequent where she cannot sit upright and struggles to get out of bed. We care for her as much as we can, but as we work 9-5, grandad takes care of her during the day, even though he is quite a bit younger, he is starting to struggle helping her get out of bed as she is gaining weight. Can you suggest any medical aids in the meantime to help whilst we sort a carer out.

Kind regards

[bowlingbun]

Hi Louise, welcome to the forum.
My mum had very serious spinal problems, including hyperostosis, she ended up bent double in a wheelchair, needing to be hoisted in and out of bed, unable to do anything for herself. She passed away three years ago, at the age of 87.
It's very easy to fall into the trap of "we can cope" but in fact everyone needs to acknowledge that her needs are going to gradually increase, and as everyone concerned also gets older, the more help you get now the easier it will be in the future, and the longer she will be able to stay at home, rather than move into a nursing home.
Your role should be that of care ORGANISER not provider. Grandad should ask Social Services to arrange a Needs Assessment, a Carers Assessment, and an Occupational Therapist's Assessment. (This may come under your GP, seems to vary by area). Do NOT buy aids without taking the advice of an OT. Some things are very expensive, but available free on the NHS.
Then write down every single thing she needs help with, bathing, washing, teeth cleaning, dressing, whatever.
Then look at the jobs she would normally do if well. Cleaning the bath, the kitchen, laundry, washing up etc. etc. Someone needs to do all this to replace her but it does NOT have to be you, or even grandad. Domestic help, a dishwasher, a tumble dryer can all help.

The other important thing to do is streamline everything. Encourage grandad to accept that one of him can't do the work of two people. I'm now 66, I used to be full of energy, but now find I can only do a fraction of what I used to.
What jobs can be done away with altogether? For example
If he wears woven shirts, suggest he changes to polo shirts that don't need ironing.
What jobs can be done by someone else?
If he has a big garden or flower borders, suggest that he does away with the borders and/or gets a gardener.

Feel free to ask us "How do you..." because there are lots of people here who may have met the same problem.

Finally, make sure grandad has regular "time off", so that he can go out, relax and unwind. His wellbeing is so important, he mustn't feel guilty about leaving her. Horrible to contemplate, but he needs friends to support him if she dies first.

[Louise_180512]

Thank you so much for your reply.

He is fit and well and household bits doesn't bother him, the dishwasher is his best friend!

To be honest the biggest struggle is to convince her that there is an issue and that an assessment is needed. She keeps reiterating that she is young for her age and doesn't think like these 'dithering old dears that knit' -her words. I believe that nobody truly thinks old, it's just your body doesn't let you do what you want it to like it did, but she believes she is the exception and these OAPs are 'dusty' and she's not like that.
So there is a fair bit of denial but because she has had this condition for most of her life, granted not half as bad as what it is now, she believes that no one can tell her anything she doesn't know. and believes it isn't related to age as such, So doesn't want to listen. When you approach the subject of getting OT in she goes straight to she would rather be dead and doesn't want anyone in their home. She refuses to let any healthcare professional anywhere near her back, and a hoist is a massive no no to her.

Clearly there is an issue, but as they are both compos mentis, and well kept, there is no other social issues, other that she is struggling to mobilised and needs assistance with ADLs. So I fear that without consent, nothing can be done- just assisting as we can, but like I say, any suggestions on any aids that could assist with helping her get out of bed as grandad struggles to weight bear with her.

[bowlingbun]

Does she accept that grandad struggles to help her, and she struggles to get out of bed. Maybe put it to her straight, if she doesn't get help for her mobility issues, to help him help her, then she WILL end up in residential care sooner, rather than later.

[susieq]

I would tentatively suggest bed risers which would raise the overall height of her bed - they should make it easier for your Grandfather to assist her out of bed - only downside is by making the bed higher it might make it more difficult for her to get into it !

An Occupational Therapist really is the best option as they will be able to visit and advise on the best aids available - understandably she may not want strangers in her home assessing her, but could you put it to her that it is for his benefit initially with the knock on effect that if he can help her with less strain on his back it will be for her benefit in the long run too ?

[Melly1]

Old thread, locked for usual reasons.