I’m posting this as a last resort to try and help my very poorly friend who seems to have been largely told by her doctors that there’s nothing else they can do for her.
She has both severe osteo and rheumatoid arthritis which has inevitably got worse over the years. She lives alone, and last Wednesday when I took her her shopping, she was stuck upstairs and was in too much pain to get down. I won’t bore anyone with the saga, but by midnight an ambulance came and took her into hospital where she remained on a trolley in a corridor for 48 hours. Her daughter, her only child, stayed with her all this time until she was admitted to a ward. Her daughter has a friend who works in a care home, and offered her a bed for respite care as the hospital kept trying to send her home. She is now in the care home at the cost of £1600 a week. I visited her yesterday, and I was shocked by how much she has deteriorated. One of her knees has crumbled but the orthopaedic surgeon is unsure if she would survive the operation. She is in agony and can barely stand, and consequently wets herself although she’s not incontinent. She has tried the strongest morphine patches which give her no relief. She takes multiple other drugs. She is barely eating.
There’s no way she could cope at home, even with carers, and she certainly doesn’t have unlimited funds. She’s tried seeing a private doctor who wasn’t any more helpful.
It appears that all her friends have melted away, and apart from her daughter and me, she has no one.
Her daughter is understandably very stressed and upset and has been brilliant, but as a cancer survivor with a demanding job is not in the best of health herself.
Sorry if this is a bit long, but I just wondered if any of you out there have any suggestions because we feel there’s nowhere else to go. I should mention that she’s 77.
I just feel so helpless. If you kept an animal in such pain you would be prosecuted!
We live in Surrey in case area is of any importance, theoretically the wealthiest county in the UK!
Any suggestions gratefully received.
It's really unacceptable for your friend to be left to wet herself.
The home should have equipment to either help her stand, even if just for a minute or two.
Failing that, she should be hoisted onto a toilet.
I'm sure she wouldnt feel so defeated if she had at least some element of control.
Has she been seen by the district nurses or GP since she was admitted to the nursing home? That is the first practical step to help them to help her move her priority higher in the hospital system.
I was told he was not a priority for the pain team.
I am shocked by that OldFrill , surely pain relief should be a priority.
I am sorry, Bazza, you must feel helpless.
This sounds totally unacceptable but I do remember when my dear cousin left hospital after a difficult hip replacement she was told she needed to go to a care home, courtesy of the NHS, but was then charged thousands for a few weeks' stay. It seems so unfair.
The home doesn't sound as if it is providing the care needed for the money being charged. Is this the right care home for her needs?
Bazza is your friend in a care home or a nursing home . As there used to be a different I don't know if it's the same now. Care homes where just staffed with carers where nursing homes where staffed by nurses .
I can understand why the surgeon said she was unlikely to survive the operation. As she has both osteo and rheumatoid arthritis she's getting pain all round.
I know from my aunt having rheumatoid arthritis this is over 25 years ago but assume it's the same . It doesn't just effect your joints but also internal organs as fatty deposits form on them . My aunt's kidneys stopped working because of them and had dialysis for 10 years 4 times a week for 4 hours . And they got at to lungs and needed to be on a respirator for the rest of her life . She asked if she could still go out they said no as the machine was to big. They didn't have ones that fit into a backpack like today . So she said end of life care . She was 61 when she died.
I know today their are infusions for rheumatoid arthritis has your friend been having those if so is she still having them .
Being allowed to wet herself is awful care homes have pads and she should be wearing them . I hope her daughter has complained about her mom's treatment.
With her level of pain she should be a priority can't get daughter talking to the pain clinic on her mom's behave and get her help.
I hope she gets help soon ..
No advice, just wanted to say what a great friend you are 💐
It's so annoying that euthanasia is apparently not necessarily these days, with adequate pain relief available.
Except it's not!!!
Most tkr are done with an epidural these days but it doesn't follow that a tkr would solve her issues. I had a total knee replacement done in June last year which made my issues worse. I have more pain than before the op and less flexibility in my knee, lucky if I can get a 30 degree bend no matter how hard I try. I've done physio and hydrotherapy and had manipulation under anaesthetic all to no avail. The Consultant is at a loss I believe and doesn't seem keen to make a decision about where we go from here and meanwhile I'm left hobbling around with a crutch and going upstairs on my hands and feet as I can't put any weight on that leg. I don't have the complications your friend has, but surely it's up to her consultant to tell her what her options are and for her to make an informed choice.
Oh great!
I'm going off the idea even more ☹
Me too. My son is always telling me I should get my knees replaced - things would have to be a very great deal worse before I even considered it.
I think they'd have to put me out.
No epidural!
Apparently 1 in 200 is not successful, so my friend was told.
I had a c-section with an epidural, no pain at all (unlike the preceding long and fruitless labour). So I wouldn’t mind having one for other surgery. But the recovery, the fact that you don’t end up with a 100% fully functioning knee and may even be worse off, make me think that things will have to get a great deal worse before I even consider it. Not to mention the chance of contracting an infection in hospital …
Most people I know have been fine (but not all).
I guess I am risk-averse unless there really is no sensible alternative and my quality of life, and ability to look after my dog, which is of prime importance, home etc had deteriorated to an unacceptable degree. It’s very much a question of the impact of my wretched knees on others, animal or human. I can deal with pain very well but obviously that suffered by the OP’s friend is off the scale and totally unacceptable.
My poor mum spent around the last ten years of her life in excruciating pain.
It really pisses me off that it still happens, in this day and age.
Every day I look to see if I have an appointment and am both disappointed and relieved when it doesn't arrive. This has gone on for years. Going privately means making that irreversible decision!
My mum used to say she'd like the supervet to make her some wheels or something, instead of her legs.
I've had two TKRs with a spinal and sedation. I now have no pain and good mobility. Most people do after this op. Recovery is not a picnic but it's really worth it. Please don't be put off.
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