Uncaring Caring Profession

Hello, I'm new to the site and have never posted anything online before so I hope I've  come to the right place.  My beloved aunt is dying with cancer and I'm just furious about the way she's been treated but don't know where to turn.

Ten years ago my aunt developed sore white patches in her mouth and a lump on the side of her tongue.  The lump was removed and tests showed she had pre-cancerous cells, but no further advice, monitoring or medication was offered so she just got on with life. 

Eight years ago she started to complain of severe pain in her back .  Doctors put it down osteoarthritis.  Over the years the pain has increased and her spine has become so severely deformed that she was unable to walk so became housebound and could no longer lie on her back, so she slept sitting up. Still, doctors insisted it was osteoarthritis.

Last year the lumps on her tongue came back so she was sent to have them removed but this time tests showed she'd  developed tongue cancer and 75%of her tongue was removed.  During her hospital stay other scans and tests showed that her spinal deformity wasn't osteoarthritis at all.  It was actually spinal TB. She was immediately whisked into isolation until the docs decided the tuberculosis was no longer contagious and she was put on drugs to control it.  

Her doctors felt the best treatment for her cancer was daily radiation for four weeks followed by chemo, but due to her spinal deformity, her age (82) and her frailty they decided she wasn't up to the rigours of the treatment  and were keen to release her from hospital as soon as possible.  In all, she'd spent seven months there and by this point, her leg muscles were completely wasted and she'd lost all strength in her arms and was bedbound, so we hurriedly had to find a care home for her.

The "care" home have proved less than caring and charge  her £5000 a month for the priviledge. Many is the time we've had to complain because no one answered her help bell for over half an hour; meals sometimes arrive cold, dry and full of lumps, despite the fact my Aunt can only eat runny, pureed food; care assistants are sharp or rude because they can't understand her speech and can't be arsed to listen more carefully; and she's often in pain due to rough, impatient handling.  My aunt is the most polite, kindest lady you could wish to meet and whilst her body has given up her, her mind is still clear, so she understands and is very upset by this treatment.  Of course there are some lovely members of staff and we're forever grateful to them, but for the most part our experience of a care home has been less than positive. 

My aunt is now in the very final stages of her cancer, with frequent heavy bleeds which she has been left to cope with on her own, since staff are so slow to respond to the help bell. They do not record, time or monitor the bleeding, just say its all par for her type of cancer. There is only one qualified nurse, the rest are merely care assistants with no medical knowledge or training.  After a furious row yesterday, they agreed to give her 1:1 care, but only for last night.  She will have to pay extra for further close assistance. 

The care home's doctor feels the care she's receiving is adequate so won't refer her to a hospice.  A Macmillan nurse visted twice to assess her, but she's now disappeared. 

I apologise for the rant, but my aunt is a fragile, frightened, old lady with only a few days left to live and I'm so angry at the way she's been treated for the past year by the entire caring profession but I don't know who else to talk to.

Thank you, if you've taken the time to read this.

  • I am so sorry about this distressing situation.  Could you try speaking to your aunt's own GP about moving her?  I suspect the care home's own doctor will not want to upset the people who are paying his wages.

    Alternatively have you spoken with the care home's management and your local Social Services (I think they are responsible for monitoring care homes).  I would keep a record of what is happening (the good things done by the nice staff and the bad things done by some of the others).  Then you could make a formal complaint if necessary.

    I don't have a great experience of care homes but £5,000 a months sounds horrendous and I would expect a lot for that kind of money. 

    In the meantime could you and other family members arrange to spend as much time as possible with your aunt - I realise this may be difficult if people are working.  I would give Macmillan a ring to find out what is going on - they should be keeping you informed of what they are doing and why.

    I am sorry you are in such a difficult situation - wanting to do the best for your aunt and not sure where to go.  My best wishes.