I'm new here and am exploring help and advice for my 88 year old mum.
Mum was diagnosed with RA about 6 years ago and has been taking Methotrexate for this. Mum was never able to come of prednisolone completely which she had to start when she was newly diagnosed and though her dose is only 5mg per day, the 6 years of taking them seems to be taking its toll now. As you might expect, mum has all the side effects including think skin, and now, a vertebral fracture diagnosed following MRI and is now awaiting a bone scan. However, the GP is convinced this is steroid induced despite the fact than mum has taken Adcal every day for the last 6 years too and, for the last year, Alendronic Acid which her rehumatologist prescribed given she had been on steroids for a long while.
Mum's latest problem is the first fracture she has had and she had not injured herself. She just woke one day with severe lower back pain, and, oddly, very swollen feet, ankles and toes. One foot has never gone down and the other comes and goes, as usual, when raised and when lowered. I've no idea if the two are related but from my own nursing background, I can't think that they are. Mum's feet are a dreadful colour, almost looking badly bruised.
It's been seven weeks now and mum is still in a lot of pain, not able to do really anything for herself. She props herself up with pillows to raise her chair and struggles to move in bed or get in and out and off the toilet. The GP will not refer for OT assessment until after the bone scan. Medicines prescribed have been Co Codamol and Tramadol though mum hasn't taken the latter as he told her they would 'space her out,' but also, she takes warfarin and I'm aware there can be interactions and bleeding.
So, I'm keen to understand what experiences other older people of my mum's age have had with these fractures and am grateful for any expedites you might share whether good or bad so that we might have some idea of what the future might hold. Mum lives with me and I'm her carer as an only daughter who is single. I work full time but am wondering if I should reduce my hours right now as not only is it a big worry but it's hard doing full time work, home and caring duties as I'm sure many of you will already know.
Thank you all in advance for any help or advice you can offer.
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PaulaE
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Hi Paula. So sorry you and your mum are struggling like this. I am replying because it struck a chord with me and my mum. My mum passed away many years ago but had Ra and osteoporosis. I also have Ra and osteoporosis. The same thing happened to my mum and after being immobile for 6 weeks in hospital recovering from an operation. On the first day she was helped out of bed part of her lower spine collapsed and she lost 2 inches in height. Unfortunately her osteoporosis had not previously been diagnosed. Although your mum has been taking alendronic acid and Adcal which are helpful in slowing down the deterioration the continued use of steroid tablets is known to reduce bone density with long term use. The bone scan will show the extent of the problem and therapy will then be decided upon. My mum died of stroke at 67 so isn't a good comparison to your mum. But after her spine fracture she was still able to walk round the house with a stick but used a wheelchair if needed to go out. She lived in sheltered accomodation and I worked full time but did her shopping and cleaning. One thing I must say is that I think you and your mum should see the rheumatologist about her Ra medication because if she has so much swelling her Ra doesn't seem well controlled at the moment. I wish you and your mum well.
Hello and thank you very much for taking time to reply.
I'm sorry that your mum too had RA and OP and that you have the same. They are both rotten conditions and I'm always amazed at how much courage many people have living with these diagnoses. Beyond what mum already takes to help guard against the taking of steroids, I'm not sure what other plan there might be but I've just tried to contact the rheumatology specialist nurse again to see if there is any progress on getting a medicines review. If the scan is going to be a while, which I fear it might be, I worry about carrying on with steroids even though I can't see other options. I hate giving mum medicines every day that I know are harming her further. I think getting a wheelchair would be a good idea as, like you mum, my mum can't really walk other than scuffle around the house now with a stick and holding onto the walls. Certainly she will not be able to get to a hospital appointment with all of those corridors to walk along. She worries so much about burdening me of course so we are both our worlds worse enemies trying to look after each other!
Thank you so much once again. Wishing you safe and well too.
Thanks Paula. I know how hard it is not only looking after someone but also trying to work full time. I managed it only with the help of my husband who looked after the kids whilst I tended to my mum's needs. You also have to think about your own health and future which may be affected by reducing your hours. I don't know your financial situation but you need to consider the effect it may have on your pension. I was only 39 when my Mum died and when I was 40 I started with pains in my arms and shoulders for which I was given anti inflammatory meds. I told my GP that Mum had osteoporosis but didn't find out till it was too late. He referred me for a dexa scan and I found out that I already had osteoporosis so was started on Adcal immediately and later Alendronic acid. Getting diagnosed early has saved me from my mum's fate. However by the time I was 43 I was diagnosed with RA too. Now 64 I thank my lucky stars for early diagnosis. I hope you are still feeling well but if you haven't already been checked out yourself I would think about doing it for peace of mind. Best wishes Paula.
Ah, that's very interesting indeed. To be honest, I've had aches and pains for a few years. Put it down to menopause, I'm 56 now. But, I do have odd joints with onbious signed of change I'd say. I'm a nurse myself but now work in NHS administration. Stupidly, when I was 55, mum was having another eposide of being more unwell. She has a number of long term conditions and I was getting really tired ( no children but two lovely little dogs to care for too ). I spoke to a dog walking friend of mine when he caught me having a cry on my walk. He told me that as a teacher, he had given up work at 52, took his pension early, cared for his elderly parents until both passed away and, he has never looked back. He is now 61 and enjoying life on a pension of £22k per year! So, though I still had a mortgage then, I decided I would do the same. I didn't have full pension as I've spent time working in the third sector too during my career, hospices specifically, and care homes. As I hadn't reached 60 my pension was (is) reduced by a quarter which put a dent in it for life of course. I sold up, paid off the mortgage and mum and I moved away and bought a new bungalow somewhere cheaper. My plan was to then get a part time job, be there for mum more and, hoped I'd feel a bit better myself. The move backfired badly and we both hated it. So, cutting a long story short, we are now back where we came from, my work took me back which I was grateful for but I work full time to help try to limit the damage I did by taking my pension early. As you say, my future, I can't pay into my pension again or do anything about that but I can try to save a bit so that I hopefully have something to fall back on if I were to become unwell myself. I've 11 years to go to state pension of indeed there is one by then.
The bungalow we now live in also needs a bit of work so my work is helping to pay for that bit by bit.
So, daft thing and a lesson learned too late but it's why I'm trying to work for as long as I can.
I did share my own aches and pains with one of mum's RA nurses a few reviews ago and she said I should really get checked but you know how it is! I don't think my GP would refer me right now for obvious reasons. I have been to the GP and mentioned it a few times but I'm told it's likely an age thing.
Nice to speak to you and thank you for sharing your own experiences with me. It's helpful to have the insights and guidance of others in similar positions.
I am sorry to hear of your mum's health problems and the difficulties you are faced with caring for her.
I have just had my 66th birthday so not of the same age as your mum, also I do not have treatment for RA.
Steroids are known to cause bone loss resulting in fractures if taken for any length of time.
I do have 6 spinal fractures, Osteoarthritis and spinal stenosis, and bulging discs along with other issues in my spine.
I am as you will understand familiar with the pain the fractures cause and may be able to make a few suggestions to help both your mum and yourself.
I have never had a fall with any of my fractures, like your mum I have woken to excruciating pain and unable to move.
I have had 2 fractures in the last 9 weeks, the most recent only happening last week.
I luckily have my husband who can help where he can, over time we have found together the best way to help move me (this is never without pain)
I have to do this very very slowly and to help reduce the muscles going into spasm take a low dose of Diazapam (I do not know if it would be possible for your mum to take this as a low dose given her other medications.
If she has been given Tramadol she really should try it maybe if she has a reduced dose to begin with.
I do not like to take pain medications but at times like this they are to help us be more comfortable and rest us.
Losing slerp is one thing been awake in pain is another.
To get out of bed.
If your mum is laying on her back then she first needs to turn her head, followed by turning her shoulders, body and legs together, keeping them as straight as possible.
Once she is on her side if she raises herself by pushing up with her hand and arm bringing her legs off the bed at the same time.
You can help by giving her your hand and arm to pull up on. As she is getting to a sitting position she needs to keep her spine as straight as possible.
I then get to a standing position by pushing down on the bed with one hand balled into a fist and the other by pushing onto my husbands hand whilst he supports under my lower
arm. I do not know how strong your mums legs are but my body weight has to be taken by my legs .She will need to push her wight down on her feet.
It sounds a lot but I have tried to go through it the best I can.
One of the hardest things with these fractures is getting on and off the bed.
Recently we have acquired a sliding sheet this has been helpful in turning me and preventing pressure sores.
I have spent hours crying sweating and screaming with the pain (my husband too)
Sitting is painfull, going to the toilet is painfull and difficult so it is important to drink more to keep the bowels working with as little or no effort as possible.
I have the same problem with my ankles one more so than the other.
My feet are also blue and cold and I put it down to poor circulation.
Some soft warm socks really help.
In your mums case though perhaps it should be talked through with her gp.
Regarding yourself it is important to look after yourself.
I became my mums only carer after my sister fied suddenly, this was 11 years ago.
It is easy to not take care of ourselves.
We have to because where would our mums be if we became ill??
It is obvious you are doing a brilliant job looking after her and she will know and appreciate it.
I can look back and know I could not have looked after my mum any better than I did and she knew it.
If it is possible for you to work less hours it would probably be a wise choice for the both of you.
Hello there and thank you so much for your kind and insightful reply. Bless you, what a time you have had and are still having learning to live with these fractures. I will share all of your helpful tips and advice with my mum and we will try some of the helpful suggestions you have made and that work well for you.
I am really grateful and though I hate to think of anyone else suffering in this way, it does help to know that mum isn't alone and that with the right help and advice, she will hopefully be able to adapt and get to grips with managing life differently.
Thank you. Hopefully this is something the GP might refer for as it is lumber as far as I’m aware. Her swollen feet are as much an issue when it comes to trying to walk but I’m not sure there is a connection even though it all started at the same time.
Sorry to hear your mum is so badly affected. Can you make a social care referral for her - that could then include an OT assessment. I work in social care and I know a GP referral is not required here. You can request a carer assessment at the same time.
Or if you have a carer support organisation locally you could start with them? Carers UK have a good website.
I think contact with social services is the next thing I'm going to try. I have a local age UK which is co located with care Uk so I may also contact them. I know they are having to make cuts at the moment which is sad but they may be able to offer some advice.
Thank you for replying, really appreciate your time.
Yes, mum's diet isn't too band considering her age. She wasn't diagnosed with RA until she was 82 and only went onto Alendronic Acid about 18 months ago, but, was on Adcal from the start once diagnose. Her initial steroid dose was high before she be some better controlled with the MXT but, we have just never been to withdraw steroids all together unfortunately.
Your poor mum. Just have suffered too and that will have been hard for you as her care giver, it's horrid to see our loved ones suffer when there isn't much we can do to help isn't it?
Hi I am sorry to hear about your mum. I have fractured vertebrae due to osteoporosis. I found it very difficult to get on and off the toilet. I bought a raised toilet seat which helped greatly. I also bought a bed rail which fits under the mattress. It helps me get out of bed much easier. Don’t know if these ideas would help your mum. I wish you both well
Hello. Thank you so much for replying and sharing your experience. It’s rotten isn’t it and very painful. I’ve ordered a raised toilet seat and a bed rail like the one you mentioned for mum so I’m hoping it will help in the same way. I hope very much that your back improves and that you are comfortable and hopefully not in too much pain. Thank you for your kindness once again.
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