Here for advice on heart failure

[SylviasMother]

Hi, first timer here.

I’m a 45 year old man helping my 90 year old female friend. She has heart failure. Only recently diagnosed as she has never been to the doctors, they had no medical notes on her apart from a couple of things.

Her mobility is bad, it alters day to day, the smallest activity leaves her breathless.

She has refused to go to hospital and she has also refused to have any tests done. We’ve recently put in place out of hour medical care access via community nurses etc as she doesn’t want ambulances etc and she has also put a DNR in place.

She has a build up of fluid on her legs and she is taking a water tablets and blood pressure tablets. Her last blood pressure reading was done yesterday one after the other and they were 173/81 sitting and 166/81 standing.

She has started to sit with her legs up which has helped a little.

I don’t know where this journey will take us and I do not know what to expect. The Dr has been quite vague about it and has only said she may improve it may decline.

She lives alone in a house with stairs an no downstairs toilet facilities. I’m in the process of getting her a stair lift. I visit her 3-5 times a day depending on her needs which vary from day to day.

Any advice would be greatly received, I don’t know what the outlook is here. I just want her to be happy, comfortable and for her requests to be met.

Thank you in advance 🙏

[Prada47]

Hi I am sure your friend is very grateful for the help you are giving. You say she is 90 I am no expert but at that age the chances of improving is difficult to contemplate. I would suggest that should her condition become worse then end of life care maybe an option. I don't mean to sound so negative but these things need to be considered. I think you need the help of Professionals either Medical or from the Social Care Social sector

Regards

possibly Pumping Marvellous web site maybe of use.

[SylviasMother in reply to Prada47]

Hi there,

Thank you for your kind words. I don’t think you’re been negative, I have already been given some numbers for palliative care as my friend does not wish to have any medical intervention. I’m shocked she agreed to water tablets and blood pressure medication. She has never even had a paracetamol before.

I didn’t think that the outlook for her would be great. I’m just a little unsure of what may happen going forward. During the last 6 months she has gone from being fiercely independent to requiring help. It alters on a daily basis, good days and bad days. Some days I need to put her into bed, other days she is capable. There seems to be no set pattern to this either.

I am able to cope helping her at the moment but I know there will come a point when I will need to get some more professional help. She agreed to a commode this week which is also a massive step for her.

She is a very dear friend and I hope I am able to make the remainder of her life, however long that is, as comfortable as possible.

Thank you again for your kind words

[mits123 in reply to SylviasMother]

Firstly it is great that you are so dedicated to helping your friend, that in itself is probably a great comfort to her.

If you haven't done so already and she is willing, get her to sign a letter for her GP surgery saying that she gives permission for you to discuss her medical issues/needs, or if you want to go the whole hog a medical power of attorney. You can also contact your local end of life care hospice, they will be able to give you advice on what to expect, they will not force her to do anything she doesn't want to, whilst also advising you on how to cope best with her needs going forward.

[SylviasMother in reply to mits123]

Hi there.

thank you for you reply and also your kind words.

I have already been given permission to access and discuss her medical records. She does have a niece who is 77 who has medical power of attorney but not financial. I’m in contact with her niece a few times per week just to give her a truthful update, my friend tends to play down what is happening as she doesn’t want people to be worried. Unfortunately the niece lives a couple of hundred miles away so they don’t see each other too often.

My friend has far from given up but doesn’t want to attend medical appointments and hospitals. She says she has had her life and is content. She is adamant she wants to stay in her home, she has lived there since she was 6, so that’s 84 years. Unthinkable!

Thank you for your advice about the hospice, we have one local so I will give them a call.

I appreciate you taking the time to respond to me so thank you.

[Blackknight57 in reply to SylviasMother]

It rather sounds like she want to die at home. With a dnr place , little you can do.

the swelling is probably due to her age and heart problems.

You could try compression socks, like you have on aircraft flights. But that sounds more like water buildup.

[SylviasMother in reply to Blackknight57]

Hi there.

I have her in some compression stockings already, they don’t seem to be doing a great deal but going with it along with keeping her legs raised.

She does want to die at home, she’s made that quite clear.

Over the last 4 weeks there have been a few changes, she’s having the odd patch of “brain fog” and getting a bit confused and muddled up, she’s usually very on the ball. The slightest bit of walking makes her extremely breathless and leaves her sweating and tired. She spends a majority of the day sleeping. As she has refused any tests to be done I just don’t know where we are at as I have never experienced this.

I will do all I can to fulfill her wishes to be at home, I’ve been directed to help should we need it.

Thank you for taking the time to get back to me, people here have been immensely kind and informative.

Thanks

[Blackknight57 in reply to SylviasMother]

Brain fog tell me about it. That’s due to my thyroid out of wack(under active)

It seems your friend is ready to go, and is bidding her time until the Devine takes her.

Just keep you eye on her help make her as comfortable as you can , call the services when the time comes. It may seem harsh but with a dnr in place there is nothing much you can do.

Emergency services will need to see the dnr paper. They will stop resuscitation one they see it. I hope you know where it is should the worst happen while you are there.

[SylviasMother in reply to Blackknight57]

So sorry you suffer with brain fog too, it must be stressful for you.

Thank you for your advice, I think you’re correct in everything you say. The doctor is visiting us on Tuesday and is bringing the DNR with him so I will have something should I need it.

He has recommended a higher dose of her blood pressure tablets, but she is even refusing that, she just says to him to concentrate on his younger patients who have their life ahead of them and not her. I can’t help but think she wants to speed things up a bit.

Thank you for your words of wisdom.

[Happyrosie]

do contact social services at your council for a discussion. They would need to be aware, in my view. Suppose you had a bad cold and didn’t want to pass it on to her - someone would still need to go in and see that she’s well.

[SylviasMother]

hi there.

Thank you for the advice. I didn’t even think about that! Thankfully I haven’t been ill as yet but you are correct, should that happen I wouldn’t be able to go. I’ve only had a few responses here and it’s been far more informative and helpful than the information I was told by the doctor. It helps to hear from people in similar situations.

Thank you 🙏

[Manderson27]

Perhaps Occupational Health could come and asses her in her home. They were very helpful with mum and provided advice and devices to help with her safety and comfort. A fall alarm was a necessity as mum fell quite a lot. I had to get carers in the end to provide hygiene and medication monitoring as I could not do everything. That was a such a help, just knowing someone was going in twice a day as well as my visits. Just be with her, chatting, watching tv, looking at old photos, listening to her stories. We can lose ourselves in the practical care side and forget that just being there for a cuppa and a chat means so much more. I learned that the hard way trying to be a carer when mum just wanted her daughter. Also it can be very stressful for you so don't forget to take a break now and then (which is where the carers are so helpful) It is lovely that she has you by her side, that is pretty much all she needs, a friend, who understands her.

[SylviasMother]

hi there,

Thank you so much for your response and encouraging words.

I’m sorry you have been through something similar with your mother, it sounds like she was very lucky to have someone like you around to help her and keep her company.

You are completely correct with everything you say. I know I will only be able to do so much for her and as the care increases I know we will have to get some form of care package in place.

It’s been so helpful to hear from other people and their experiences, I feel like I am going into this a little blind, not knowing what. To expect and what to look out for, the Dr hasn’t offered up much information and I would like to be prepared in some sort of way.

Thanks again for getting back to me, I really appreciate your advice. 🙏

[Qualipop]

Oh bless her. We dealt with similar with my mother in law. She'd heard a nurse talking about another patient who had cancer and assumed they were talking about her so she simply stopped eating and refused all medication. No amount of reassurance could change her mind . She too was in her 90s and had simply had enough. The only thing you can do is try to persuade her that the increased tablets will not prolong her life but they will make her much more comfortable. She might accept that. Make sure her doctor is honest with her and asks exactly what she wants.

[FraserB]

It sounds like you are providing great support to your 90-year-old friend Given her diagnosis, it's not uncommon for her mobility to vary from day to day, and it's positive that she has found some relief by sitting with her legs up. The build-up of fluid in her legs, known as edema, is a common symptom of heart failure. It's good that she is taking water and blood pressure tablets, as these can help manage the fluid retention and blood pressure levels.

The fact that her blood pressure readings were high its essential to monitor her blood pressure regularly and consult with nurse or doctor since I would be concerned about TIAa or stroke if pressure does increase more. Heart failure is a chronic condition that requires ongoing management.

I have had experience with both my senior parents and also friend and learned that some do well at home with increased home care and others experience a crisis due to their health (stroke or a fall) and end up in hospital and from there a senior’s home. It is a challenge for certain to predict the future. But preparation and planning is important.

Good to hear about the DNR which in advanced age is important. By being there for her you are making a significant difference in her comfort and well-being.

[Cavalierrubie]

You sound a very kind and caring person. If you get really worried about her and feel you can’t cope, as a last resort, ring for an ambulance without telling her. The Paramedics are really kind and will talk to her. You won’t be betraying her. It will be helping her in the long run to be looked after properly and comfortable.

[Shabana1974]

I was in a similar situation in 2011 my elderly neighbour was deteriorated quiet fast. The lady my neighbour was 1 of Uks first Health Visitors sadly her family didn't live near, and I found her cousin quite selfish and greedy. On her last day at home the carers left her in bed as they couldn't get her out of bed. I went in around 10am on my usual check in visits and was disgusted to discover what there carers did. But called the Ambulance she didn't want yo die alone. She was admitted and sadly the drs said it was near the end. I called her supposed Loving cousin and informed her that rose was nearly gone. Her cousins responded by saying I am elderly I am too unwell to travel. I sat wish rose until 2am then went home to my family. She sadly passed away at 5.45am. I called her cousin that she was gone. And then all of a sudden she was on a train to London. 🤦‍♀️ she wanted to go search Roses home for Valuables but I called the Solicitors and she banned her from the house. Rose left a big chunk to the Church and some to her cousin. And her funeral.

I would keep an eye on her fluid intake I am restricted to 1.5 Litres a day.

I told you about Rose just so you know your not alone others on here have been through similar situations

Best wishes

Shabana