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Carers UK Forum • How do I cope?
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How do I cope?

Posted: Mon Apr 02, 2018 8:53 am
by Sue_180312345
This is a rant. I've no one to share this with so please just bare with me.
I've been caring for my 85 year old mother for 11 months. She has kidney cancer, osteoarthritis and heart failure. She's also deaf. She can no longer stand or move unaided.
I'm sure she has a UTI as her catheter bag goes black within hours of being changed and her urine is extremely strong. The Dr doesn't seem bothered. We've seen 1 district nurse in 11 months.
The carers that we had 3 times a day popped in, asked how she is then lef so I've cancelled them. They were very expensive (we don't get financial assistance) and didn't help.
My mum's hygiene is a major concern. She can't wash herself and gets upset when I try to do it for her which exacerbates her breathing difficulties. Consequently the entire house smells so bad it makes me gag.
Asking carers to help wash her involves specifying a time for them to come. We don't have days and nights, just times when she's awake and times she's asleep. When she's asleep I don't want to wake her as its the only time she's unaware if the pain.
I'm at desperation point. I can't do anything to make her life easier, I can't seem to get any help, I'm shattered, I need sleep and need to go home.
Rant over. Thanks

Re: How do I cope?

Posted: Mon Apr 02, 2018 9:07 am
by jenny lucas
Time for residential care.

Sad, but there it is.

How advanced is her kidney cancer? Has it pread to her lungs? Was the tumour on the kidney removed, or is it still there (they probabaly won't have operated on her if she is medically weak with other problem).

Being blunt, how long does her oncologist think she has left? Try and get an accurate estimate from him/her? Is she in palliative care only (ie, not on anti-cancer drugs, just meds to keep her 'comfortable). SHE SHULD NOT BE LEFT IN PAIN! That's intolerable. She should be, at the very least, on sufficient painkillers for her NOT to be in pain. My bedbound husband with terminal cancer had a syringe driver - it's a small box (like a big box of matches), kept under the pillow (or in a pocket for mobile patients), and it has a tube let into a needle just under the skin in the arm, held there permanently, and it 'drips in' painkiller the WHOLE TIME. Or, patients have patches on their skin, lke plasters, oozing in painkillers.

I would also phone your local hospice, and see whether there is hospice-at-home care, or residential hospice care - my husband had the former and it was wonderful. It is not restricted to 'dying' patients, and can last for months. Well worth contacting.

Or, as I say, actual residential nursing care.in a nursing home.

Re: How do I cope?

Posted: Mon Apr 02, 2018 9:09 am
by bowlingbun
Welcome to the forum. Either mum has carers who actually care for her, or she moves into residential care. Does she have any understanding of the situation? Is she having any hospice or Macmillan support? Am I right to think you do not live with her?

Re: How do I cope?

Posted: Mon Apr 02, 2018 9:44 am
by Sue_180312345
Thanks for responding. Mum's cancer was diagnosed as inoperable. She is not under an oncologist, just her GP. She is aware that she's not as well as she was but refuses to leave her home. Her Dr hasn't agreed to refer her to Macmillan or hospice despite me asking. They can't act without a referral. I've been living with her since last May but my family home is not in this country..

Re: How do I cope?

Posted: Mon Apr 02, 2018 9:51 am
by bowlingbun
I suggest that you ring the GP practice manager, make an appointment to see him/her, and explain the seriousness of the situation. Also you could make a complaint to the Care Quality Commission, you can do this online.
Google NHS continuing Healthcare, designed to help people towards the end of their lives. Ask the GP or Practice Manager to make a referral.
Is mum claiming Attendance Allowance?
Do you have Power of Attorney?

Re: How do I cope?

Posted: Mon Apr 02, 2018 10:18 am
by babybyrd
On sue
I can totally empathise and understand your feelings as I'm living through very very similar but with my dad. In fact I was going to post my own questions and rant this morning

I've cared for my dad In some capacity for 21 years ...not that he really needed it at the start ..I was just a replacement for my mom when she died.

Since the end of Nov i have cared full time .... Leaving a good job and also my home and hubby overseas.

My dad is 90 ..has prostate cancer ..Parkinson's ..depression and vertigo. Due to the prostate cancer he has a urinary catheter ...which due to the Parkinson's tremors ..he is unable to empty or change himself.

His urine for almost a month has been thick vivid red all day ...night bag when I empty it each morning is dark brown and thick ..we have been to urology nurse ..urology specialist ..g p. And been taken by ambulance to a and e. Paramedics and nurses seem concerned but doctors dont. The bleeding has made him aneamic so they give him endless iron supplements and endless antibiotics for uti s but then say it's all to be expected with a catheter ....he is expected to be with this catheter for the rest of his days. Three weeks ago he blacked out when standint up ...cracked his ribs and spent 15 hours in a and e and they still sent him home.

I am at my wits end but still cant bring myself to send him to residential care so only have myself to blame.

Sorry for hijacking your thread but I will be watching the replies you get as i think they will help me too xxx best wishes hun ...hope things improve for you soon x

Re: How do I cope?

Posted: Mon Apr 02, 2018 10:30 am
by bowlingbun
I urge you to go and look at some residential care homes, my mum's was lovely, like a hotel with nursing, her own en suite toilet and basin (she couldn't use a shower, which some rooms had in the en suite, instead there was a very special bath in a special bathroom). The food was lovely and they did as much as possible for mum. Having a qualified nurse on duty 24/7 means that pain relief which couldn't be administered at home, was readily available. If mum is classed as "self funding" because she has over £23,000 available, then apply for Continuing Healthcare asap. This is something of a postcode lottery, but if she qualified, then the care home fees would be paid for by the NHS.

Re: How do I cope?

Posted: Tue Apr 03, 2018 9:03 am
by Sue_180312345
Thanks for responding.
I've called mum's Dr. The first appointment I can get is 10 April for a telephone consultation.
I know she should be in a residential home. However she doesn't want to leave her home and, for as long as she knows where she is, I'm not going to make her despite having LPA.
Mum is very private, stubborn and independent. She wants to look after herself. She will not have strangers helping her with personal issues. She only lets me help when she's completely unable to stop me.
She refuses to use a commode but getting to the bathroom is a 10 minute, 4 rest period, operation. (The bathroom, for me, is 2 paces from her bedroom).
I can't do anything to make her life easier. I've given up trying to make her eat, drink, wash or change her nighty. It's just not worth the struggle.
I realise that I am not helping myself by trying to look after her at home so I'm not looking for sympathy. I just want to know if there's any one out there who has lived through this and can offer any practical advice on how to cope with the guilt and frustration.

Re: How do I cope?

Posted: Tue Apr 03, 2018 9:34 am
by bowlingbun
There are a lot of stubborn mums!! (And dads too).

It's incredibly frustrating, I've now lost all four of our parents, all living within 6 miles, all telling everyone they could cope, whilst we ended up calling ourselves the "Thunderbirds" ready to jump at a moment's notice when the next crisis arose, day or night. We spent years feeling like we were sitting on a volcano about to blow, and it did, four times!

Rather than heat his home properly, father in law wore long john ankle length pants, he wouldn't even put draught excluder round the door as the "landlord would benefit" when he died!! When we had to empty out his house in winter, the cold made me really ill, as we lived in a snug cottage with all mod cons.

He certainly came into the stubborn category, but he'd lived through the Blitz in Southampton working for the railway company, never knowing where he would be sent, or when he would be off duty again. I don't think that "I can manage" mentality ever goes.

In the end, embarrassed as we were, we had to accept it was "his choice". He wanted to end his days in the home he'd had since 1947, mum in law kept it spick and span until she developed dementia. (FIL spent his last week in hospital.)

Your mum will never willingly agree to leave her home. It's up to you to make any decisions, and that's like being stuck between a rock and a hard place.

If your GP practice won't give you a phone appointment for a week, that's not good enough. Contact CQC, the Care Quality Commission. Do they have a District Nurse attached to the practice who could visit?

Mum might say she can "look after herself" but she isn't, is she?

In extreme cases, Social Services have a duty to protect "vulnerable adults". It might be worth asking them to visit, ensuring that the person visiting talks to you first about the situation.

Re: How do I cope?

Posted: Tue Apr 03, 2018 9:51 am
by Woodpecker
Dear Sue, You sound like a lovely caring lady but you will make yourself ill if you carry on trying to care for your mother. My Mum has just moved into a nursing home, she is in a wheelchair, and I had her and my 84 year old husband ( also in a wheelchair) and a year of caring for two of them was more than enough. This is your life too. When my Mum went into the home I did feel guilty, but Mum is well looked after, she is clean, well dressed ( colour co-ordinated!!) well fed, has made friends, and she is fine. So please get your Mum into a nursing home, love yourself as much as you do your Mum. Best wishes