Carer for Heart Failure


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 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.

Hope it all goes well for you Hollyhock
I hope you feel more encouraged to be starting on these things, it isn’t easy, it is facing the inevitable.
But it is removing the elephants from the room.

There may be allsorts of things suggested for your mothers care at home and not all of them will be free, eg an emergency pendant or wristband to get assistance if she falls or her heart goes.
Bed alarms for if she’s not got back into bed.
Many things they might try to push to you.
Say you will think about it.

They might want occupational therapist to come and do an assessment and then tell you about a company that does such things and give your phone number to them. They phone and talk about aids and devices and basically what happens, if it is the same as our area, you buy them or rent them via the occupation therapist team, not direct through them. I tell them I will do it independently. I am not paying for them to have commission when I can buy direct, it’s too much like private health and this is the NHS not BUPA etc.

If your mother has an ordinary bed, ask for a hospital style bed that raises her up, they should provide without quibble, the district nurse said yes before I finished asking and it was here before she was discharged from hospital.

The emergency pendant device is a call button on a pendant or wristband
There is a wall mounted loud speaker device linked through the telephone line
when the button is pressed it makes a call to the emergency help centre
it rings very loudly
they answer through the loud speaker
they speak with your mother and send someone there
if your mother is not responding or in another room and can’t be heard they send someone round
They don’t always have enough staff to respond quickly, one time we were told 4 hours, this was winter and mother was on the floor.
They should phone you to alert you anyway so you can go round there too
if it is a fall and they believe an ambulance is required and you are there or will get there before their response person then they might decline to come and say it is an ambulance matter.
You need to ask questions and see the terms and conditions

That device was a great peace of mind before I came back home and even now she has it in case she needs to use it if I have gone out for things or if she has fallen out of bed and not injured herself and not banged her head.

Our device has a periodic test done, they phone me and ask me to try the call button to see if it works and when they answer I tell them it’s the scheduled test and they confirm it is working.

it is unsavoury, but now is the time to get all those conversations out of the way before it gets too close to the time and too upsetting or too late.

I had those courageous conversations, to get rid of the elephants in the room because politely ignoring them didn’t get rid of them, it just made it more unbearable.
We got all the paperwork done, POA, updated will, DNAR, prepaid funeral plan so she has the service she wants so if she has to end up in a home, the Gvt don’t dictate the allowance for it.

So it is all done, the elephants have left the room and taken dark clouds with them. we can focus on enjoying the day and having fun and leaving tomorrow to take care of itself.

The future is bleak we don’t know if it will be tomorrow, next week or many years time, so we are making the most of each day as best as we can.

Yes OC Health rang yesterday. I had the conversation about the alarm with her as some of my elder customers have them.

I will look into benefits etc next week. I am emotionally exhausted as I well know you all understand and I am also grateful to you all for sharing your personal experiences.

I was power of attorney for my grandfather as my father too was an only child but not well enough to deal with it but my grandfather went into a home of his own will. My father died after being admitted to hospital within hours and myself and my mother dealt with the affairs but I have never faced anything like this.

I can appreciate how exhausted you are, mentally and emotionally, it is an intense time for you.

Having gone through all that with your mother for your father and grandfather I think she would want to get things in order to make it easier for you with her. It’s not nice raising the subjects, emotional, difficult to raise and feels insensitive to do, but as said, it is good to get them done and out of the way, it will be a massive weight off both your minds.

You are facing a lot of unknowns and it is a cliffhanger and it will remain one if your mother keeps defying the odds.
Get that letter to the GP then book a phone call or appointment to see the GP, ask about prognosis and how it will be, say you need to know, you want to prepare yourself as much as you can and be aware of how it will be. It will probably be vague on timescales.

You will have a clearer picture and a rapport set up with the GP if you have not spoken much.

A lot of things will be off your shoulders with all the above done and I hope you will feel easier.

We touched on the funeral yesterday. The plot with my father is already booked. I will busy myself next week having more of the conversations and getting it all done. Then can move forward.

I have already made lists and lists as I was sure when she became ill last week that it was bad and we may loose her. So have already had conversations with my husband and sons.

That’s good progress Hollyhock.
Your mum might be relieved to be sorting things out.
You only have to do them once, horrible as it is to do you know you are doing right for them and you won’t have to do these things again and you can enjoy the time you have.
We felt so much easier after.
Yes when it’s all done you can move on.

You might have to get used to the rollercoaster ride of health for your mum, thinking it’s the end and then it isn’t, been through that many times.

Maybe, as far as possible, give yourself a day off?
Do the absolute minimum of work, forget about paperwork, have something quick and easy for a meal, and… PAUSE.

At one time all four parents were very ill, highest DLA Care, and our son has severe learning difficulties.
Everyone seemed to want a piece of us.
Our “escape” was when we went to a steam rally with one of our engines. Once we got there, my normally very quiet husband could talk the hind leg off a donkey about engineering stuff, our sons were always happy tinkering with the engine, and I had time to talk to my friends or read a book, and often fall asleep!!

Strangely enough today was meant to be a day off but best laid plans and all that it has gone down the drain. Nothing to do with mother. So today is sorting out all the things mother had not told us about like her sink is leaking , drain is blocked etc. However I have a day off next Saturday for a hen do :slight_smile:

I haven’t been on here as of course things became very busy but I thought I would update as it may help others.

3 weeks my life turned in chaos from PO!, attendence allowance, bits of paperwork getting things delivered, whilst still working in my busiest season. Bonus was we could fix things in her house tht have been vroken for sometime and she usually won’t let us.

But this is why I am updating. I finally got to speak to a GP …me about mother…without mother. I challenged a few things…it turns out the water tablets are way to low that’s why they are not working, the nurse did not take the blood tests ordered just general ones and it is not end of life !! I know it’s going to be one day but right now it’s not. Why oh why the orginal Dr did not think to say once he examined her to say ’ it’s not as bad as I thought it was’…or something alike I have no idea. But the forms are done, new meds being delivered next week and the proper blood tests being taken.

It took a letter, two online forms and waiting for an appointment to get this info. I was just lucky one of my customers a similar age was put on a much higher dose and that made me query as our drs had been told they were not working and just sent the same amount. Relief but also I went from full speed damage control to …oh…

It’s nice to hear some good news! Thanks for the update.