I’ve been browsing all the useful info on this site in the last few months since my Mum (70) was diagnosed in August last year, but have only just signed up on the forum. She lives with my Dad (71) in the London/Essex area, while my sister and I live too far away to visit regularly (and wouldn’t be able to anyway given the current Covid situation).
Since her myeloma diagnosis my mum has gone through 2 courses of chemo. She was in hospital for a month in between these courses with an infection caused by an allergic reaction to one of the drugs she was taking, but recovered after going through a scary few weeks. Since then she started chemo again and had appeared to be managing okay.
However, in the last few days her mobility has reduced dramatically, and my dad has been calling in distress, saying he’s unable to cope on his own. She has a carer come twice a day, but she’s now unable to get to the bathroom (or commode), even with my dad’s assistance (he’s already hurt his back trying to carry her, which he shouldn’t be doing at his age).
At this point we’re not sure if her decreased mobility is due to the myeloma itself, or perhaps a side effect of the medication? We’re obviously hoping it isn’t permanent, but it would be great to hear if anyone has any tips for dealing with decreased mobility, or what channels we could go down to get my dad some help.
Your mother should have a myeloma nurse as part of her clinical team. In pre COVID days your parents would probably have known her (or him) and thought to have got in touch. I suggest getting in contact with the myeloma nurse or the haematology team. Your mum should have a card with an immediate response number on it given she’s in active treatment. The team, who will have access to your mum’s records, should be in a good position to help your mum and dad. It’s not usual to loose mobility so your mums team do need to know.
PS I know people with myeloma who were wheelchair bound for a few months who have gone back to having very active, fully functional lives so don’t loose hope, this is most likely a blip.
Thanks so much for the reply. It’s reassuring to know mobility issues aren’t necessarily permanent.
My mum does have a clinical nurse in charge of her care, and my dad did call her to say that she was struggling with walking and getting in and out of bed, but apparently she didn’t seem too concerned. Her mobility has definitely gotten worse since then though. The good news is that she has her regular appointment with the consultant (and I think the nurse too) tomorrow, so she should be properly assessed then.
More immediately though, I think my dad needs practical help/advice on how to deal with her issues on a day-to-day basis. If she needs a wheelchair, could he get one from NHS? What other equipment is available that could make their lives easier? Should she be receiving more in-home care? I’ve had a look online at what’s available, but are these also questions that her clinical nurse should be answering before we make any decisions?
This reply was modified 10 months, 2 weeks ago by david-b.
Luckily I’ve not had to face these issues with my myeloma to date, but did with my mother’s parkinsonism. We found our local authority occupational therapist, contacted through the GP very helpful. She did assessments whenever we asked, and arranged supplies of walking aids, a wheelchair, toileting aids, and eventually a hospital bed. We did have to hire a specialist wheelchair for a few months whilst waiting for one to be ordered for mum, but she was extremely physically disabled by then. The OT also advised on placement of grab rails etc. Not sure how this all works during the pandemic, but I’m sure there will be a system in place.
Your mum may also be entitled to a blue badge for car parking, and maybe for some financial benefits. The myeloma nurse should be able to point you in the right direction. It’s worth your dad writing down all the problems they are having so some don’t get missed tomorrow. Glad they are not having to wait for long.