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Carer for Heart Failure - Carers UK Forum

Carer for Heart Failure

Tell us a bit about yourself here.

I have just joined as on Monday my 88 year old mother was diagnosed with heart failure.

Just to set the context. I am an only child from a very small family none of whom live locally. I am married with two teenage boys. Mother has always been a huge part of my life. Dad died 16 years ago. Around 13 years ago she started to slow and for the last 10 years has used a wheelchair out of the house. She became dependent on us to leave the home. So we would take her shopping once a week , ring her every day, take her on most of our outings and camping ( usually a highly independent woman).

Lockdown saw this all of course stop. However, now looking back she was showing signs of heart failure then. She rarely comes out now. Last week she became unwell she refused for any medicial intervention despite pleading. Finally on Friday she let me ring an ambulance. She remained at home at her request and Monday the Dr came to see her and diagnosed HF. I have been visiting daily and OH are sending some things as her bathroom is upstairs.

It's to dangeorus due ot her breathing to admit her for further tests at our covid filled hospital and she doesn't want to go.

She does not know that this is possibly stage 4. Nor would she wish to know.....nor have I been told ....

But I am stuck...she has tablets to remove the fluid from her lungs and feets and anti B's for the possible lung infection plus her normal meds for high blood pressure. I have spent hours on the Internet researching life expectancy...what's going to happen etc but it all seems so variable. I could speak with the Dr but it is all feeling to much. My husband is being great.

I am tired and emotional and am wondering if there are any good sources that could give me some answers as to what I am actually looking at here......Reading through the forum you guys seem to have better grip on these things than many professional articles.

Thank you. ( oh I work full time running my own business which may have to give but I would like to understand time scales .I will move in if need be. Our house and her house are to small for my family and animals all to move in only two bedrooms at both).
Welcome to the forum.

Mum is 88, a very great age, and is now paying the price for living longer than average. From now on, her care needs are going to increase very rapidly until she dies.

She could have all the care she needs if she agreed to go into a nursing home, but if she doesn't want that, it's always a last resort, then she has to have someone other than you providing some or all of the care she needs.

Yes, I know she would rather have you, but you have a family who depend on you, your kids are growing up fast, and will soon leave home. They deserve a happy mum with time and energy to do things with them.

You could give up work, but how long will mum need you for? Could you easily get another job afterwards, or would you find it impossible to get your career back on track?

How and where to find good carers depends on a variety of things:-
Is mum now receiving Attendance Allowance?
Do you have Power of Attorney?
Does mum own or rent her home?
Have over £23,000 in savings?
Hi Hollyhock
I am caring for my mother with heart and lung disease and other conditions.
She has outlived her life expectancy a few times over.

Have you done a letter from your mother allowing you to discuss with the GP?
This is means you can discuss and update and review with the GP and ask them to be straight with you about the prognosis. The GP can only go by what symptoms and results are presented and give their best decision on that, they do not have a crystal ball and all bodies are unique.

You need to speak with the GP so that you have an indication of the prognosis and future, you cannot keep going with the stress of not knowing and trying to guess and not wanting to know, you need to bite the bullet and have that courageous conversation. It is a tough situation, you need to know but don't want to be told, but for yourself you do need to know and you can be strong for your mother. It is hard for the first few times with the GP but it starts to become more matter of fact and looking out for her than the end of the world.

Your mother has the right to know and be told, but that is your call, you don't want to worry her unnecessarily. My strategy is to keep my mother happy and enjoying each day, I keep the prognosis to myself because it's all very vague so why worry her with what might not happen, when there is something that she really does need to know then she will be informed.

Your mother might not want intervention for many reasons - frail, too weak and doesn't want to be prodded and poked and hurt as my mother says, or she is at peace with herself and ready to go as my mother is and as mother says, doesn't want to be any trouble or a nuisance - she doesn't realise how ill she is.
Everything that Bowlingbun said!

Your mother qualifies to be in a nursing home.
She needs or soon will need 24/7 care on hand and that is giving her the best care that you can because you can't be with her 24/7 with your other responsibilities.

Power of attorney is important so you can manage her money in the financial one and then the health and welfare one which is often overlooked gives you power to make decisions in her best interests, it means that the authorities and the care homes can't ride roughshod over you - being next of kin stands for nothing, you need power of attorney to be able to have say and decision making.

If you don't have power of attorney it is easy to do online through the Gov.uk website, there is a sliding scale for the costs according to means. There is a section where you can inform others of the POA but you don't need to bother with it, you need a couple of witnesses to sign the form and post it in, so easy to do and so important to have.
Thank you both for your advice. I will draft a letter with her for the GP and then go for power of attorney. She owns her house out right and does not have a great deal of savings. A home would be the very last last resort.
No one ever wants to end their lives in a nursing hoem.
No one ever wants their family member to get old, ill, infirm etc.
I went through all this with my mum.
After going in and out of hospital over 7 years, it finally became clear that whilst she didn't want a nursing home, she NEEDED nursing care.
As she owns her home, but doesn't have a lot of savings, if she has under about £23,000 then Social Services can arrange care for her, in her own home, paying for some or all of it depending on a financial assessment.
Could you afford to buy part of the property to fund extra nursing help?

You need to take legal advice, but you might be able to buy a share of mum's house to free up money for nursing care at home.
However, you also need to find out more about NHS Continuing Healthcare.

In the meantime, make sure mum is claiming Attendance Allowance.
Hi hollyhock

Welcome to the forum.

I know it's hard, but the problem with life expectancy is that no one can tell until the time things are very close to an end. My Dad had heart failure, and had several bouts in hospital over the years, but the year he'd been given when he was 73 took ten. Two weeks before he died, we were told he had about a year. You just can't tell because there are too many factors.

When Dad was first diagnosed with heart failure and given the year, we decided to ignore deadlines and do the things we all wanted to. He liked going out for meals, so we took him out. He enjoyed Chinese takeaways, so we organised a few. You may have noticed his main interest was food...but it worked to keep him cheerful, and it was only during the last few weeks that life became too much of a struggle for him.
Sadly I can't afford to buy part of her house. Everything noted and I have read about attendance allowance and will put it on my to do list. I am lucky with work as I am self employed and my customers are great and very understanding. I am claiming UC as GSE and again my work coach has been brilliant about the MIF. I wanr to much to claim carers but will ne able to claim the carers element of UC if it comes down to it. Thanks again very helpful indeed. None of my friends have been through this as of yet as my mother had me at 40.
For many benefits, if you ring DWP and ask for a form, they write the date you applied on the form, then you have a month to get it back to them. It is then backdated to the date of the claim. You can have help filling in the form too.
I have been over this evening and we have been through the things I have listed from the comments which I am so grateful for.