Reluctant Carer

Hi all
Background: Mum is 90 & has lived with us for the last 15 years. History of falls over last 5 years but no underlying cause although she has heart problems. Cognitive function declining & diagnosed with dementia this year. Until a few months ago she could walk short distances with her frame.
Current situation: after a rapid decline - sleeping nearly all the time, hardly eating- she lost most of her mobility. Just able to get out of bed & use commode but often unable to get back into bed. Resulting in water retention & very swollen legs & feet
GP referral to hospital. Within a few hours she is sitting up in a chair for her meals, eating well & going regularly to the loo under supervision. Great.
Problem: I am reluctant to increase the level of care I currently provide: meals, medication, appointments etc. I am not comfortable with personal care & prior to her admission much of this was more intimate than I wanted. I worry that they way she currently presents will deteriorate when she’s home. I can arrange private Carers for washing etc (mums savings 10k over limit). BUT she needs someone around 24/7 in case of falls etc. So my husband & I can only be out together for an hour or so & certainly couldn’t go away.
Until her dramatic improvement in hospital I was thinking it might be time for a home. I don’t understand how she has transformed overnight & worry that once home she will relapse
Sorry for the long post & thanks for your patience & any comments in advance

Hi H.

CHC / NHS Continuing Healthcare / NHS Nursing Funded Care …

Anyone mention these ?

Offered / applied for / refused ?

Main thread :

NOT an easy read despite all my attempts to make it so.

In your situation , well worth exploring.

If I was to add that the first two are FREE … would that in itself be encouragement to explore further ???

Residential care ?

No better place to start than AGE UK … everything from A - Z … well worth exploring so that you have an idea of ALL
the considerations involved.

Contact details … local branches … and a very useful online enquiry service !

Realistically, mum is nearing the end of her life. Her needs will be like a graph, up a bit, down a bit, with increasing hospital visits, decreasing mobility, until she dies.
If she is needed intimate care, then I would say the time has come to consider residential care. Usually, the difference between a “care” home and a “nursing home” depends on whether are continent and mobile.

So you would be looking at fees of £1,000+ per WEEK as she will be deemed as needing nursing care, as a “self funder” that’s more than the council would pay, that would mean less than £23,000 in savings.
Is she claiming highest rate Attendance Allowance now?

A lot depends on whether you want to have an inheritance left for you when mum dies?
Do you need the money or your freedom most?

After years of caring for my mum, her condition reached the point that she MUST have nursing care.
I worked out how long it would take for her money to run out, and knew she would die (progressive condition) long before her money was all spent. The relief I felt when she was finally admitted to the home was incredible.

Many thanks & I have read your extraordinarily helpful posts. I am taking this one step at a time. Just managed to be in the right place at the right time to catch a doctor on the ward so now know what is wrong - bad heart leading to water on chest so making breathing difficult hence lack of mobility. Improvement in mum already noticeable.
The next step I guess is to find the person who decides about mum’s discharge once she is medically fit - next week probably. Would they be the person to discuss what care would be best?

Your welcome.

( " Extraordinary ? " … chose a colour in that thread. I’ll change it just for you ! )

Next climb up a Mount Everest … with a rope this time … a hospital discharge.

The BIBLE … who does what … in short , BY THE BOOK OR … NO DISCHARGE !

Being discharged from hospital - NHS

Care plan ?

All is revealed in that BIBLE.

CHC / NHS Continuing Healthcare … posed and ready to ask that question ?


I know they are always elusive, but you need to speak to the CONSULTANT in charge of mum’s care.

Doctors are often reluctant to discuss a patient’s condition unless the relative has power of attorney, so at least the ward doctor has been honest with you, by the sound of things.

Now, like Baldrick, you need to develop a Cunning Plan.

Say that you "want mum to have the best possible care, but it’s difficult to work out which nursing home would be best for her UNLESS they could give you a rough idea of how long mum has left?

(Be really prepared for an answer you will find very difficult. (Having done this for three parents, I know how hard it is, sorry for any upset this has inevitably caused). You could even say “If mum only has a few months left I know she would enjoy X nursing home rather than Y.”
Then invent a fictitious relative who needs to be kept informed, but doesn’t have email access and can’t get to the hospital!

So ask the consultant’s secretary to write or email the answer to the “How long” question to you. It’s VITAL it’s in writing.

If they are reluctant to discuss mum’s specific case, ask for guidance about what usually happens, or what has happened to other patient’s with similar conditions.

Once you have a letter saying that mum is likely to live one month, one year, ten years, you can then take it one step further.

If under a year, with gradual decline, then mum should qualify for CHC.
ONLY start talking any more about CHC until you have evidence of what you have been told. That’s why your fictitious relative is so important!! If you have a real one, so much the better!!

Wise advice , BB.

It’s such a very, very sad situation for all concerned, knowing that whatever you want, you cannot restore someone back to the way you would like them to be, that ultimately it can only end one way, with the death of a loved one, and that then involves.

Indeed. But we are all born to die. This comes to us all. My mother is less than she was every day. My objective is to make her journey out of this life as gentle & dignified as I can.
Climbing Everest in deed.
I will ask tomorrow when I can speak to the consultant. Thank you both for guidance in navigating these uncharted (for me) waters.

Your welcome.

In CarerLand , there are whole ranges of Mount Everests to climb daily.

Nothing is ever a gentle jogg up a foothill.

Helen, that was my aim too, mum was more or less housebound since about 1980, and dad worked abroad a lot. When he was away I did whatever was needed.
One day I was driving home from mum’s house, utterly exhausted, when a little voice came into my head saying “I just can’t do this any more”… Since I’m not prone to voices in my head, it was a very significant moment.
Mum was in hospital, yet again. I was trying to get the house ready for her discharge, yet again. Only this time she would be bedbound, completely reliant on visiting carers, and me to do whatever they wouldn’t.

Mum and I finally decided together that residential wasn’t what either of us wanted, but was what she needed. The thought of having to wear nappies and sit in her own mess until carers arrived was the deciding factor for both of us.

Mum ended up in the best home in the area, without CHC, but died a year later, as expected. If I couldn’t care for her myself, my role changed to finding the place she would like the most.

Feel proud of all you have done for your mum, you’ve always been there for her. Maybe now is the time for both of you to make that incredibly hard decision too.

Thank you for sharing your experience. I am discovering my limits & know that I have to balance mum’s needs not only with my own but also my husband & (grown up but at home) children.
I have learnt that it’s never too early to have LPAs in place & have to absolutely make a will- 25 years of not doing it is shameful.
When day to day life is sometimes relentless it is hard to carve out time for the essentials which ultimately make the future easier. Much of the prevarication is denial.
I am psyching myself up for discussion around discharge. Mum is not adverse to going into a home. My sibling who lives 230 miles away has reluctantly accepted that any decision has to be about what’s best for mum & not what they think ‘ought ‘ to be done. I feel guilty about saying there are levels of care I am not prepared to provide but gritting my teeth & doing something I fundamentally cant cope with would lead to my breakdown & so no good for mum.
This forum is a special place where. We are not alone in our caring although each situation is unique.
Your replies are both consoling & motivational. Thank you.

Accepting we all have a limit, and recognising when we reach it, is so important and tough at the same time.

I shall always believe that my husband died of a massive heart attack because of the stress of dealing with our son with SLD, plus all four parents who were all seriously ill over a long period. At one time, we had FIVE people all entitled to highest DLA care in the family.

Then I was diagnosed with kidney cancer, we were always devoted to each other. As I went through the hospital doors for major surgery, I told him that if anything should happen to me, he should find someone else as I knew he would be so lonely without me. He said that the same applied if anything happened to him.

18 months later he was dead. Sometimes I think my illness may have been “the last straw”.

No one can know just how much time they have left, it’s all too easy to say “when…” until all of a sudden it’s too late. It’s not just our carees, but US as well.

There is no need for any guilt, mum is lucky to have you supporting her.

BALANCING everyone’s needs is definitely the right thing to do, but be sure to put YOUR needs on the “scales” too.