Can anyone talk to me about heart failure and weeping edema in a very elderly person.

[Redcherries]

A close relative, late 90s has been suffering heart failure, blood cancer and some form of secondary cancer not diagnosed. They weren’t expected to live early this year during a hospital admission but made a turn around and was able to return back into assisted living. We travelled then and had time together in the hospital (they’re not in the uk) and we speak several times a week.

They’ve been doing very well, quite independent other than help with showers a few times a week.

The last five days have seen a sudden deterioration, they’re very breathless, struggling to hold a conversation, blood levels have dropped and now today weeping edema, quite substantial by the sound of it. They also said on the phone they believe this is the end, which is the first time it’s been said by them.

Can anyone tell me what to expect over the next few weeks/months. I’ve never been in a situation like this, I can’t go to them, I can’t speak to anyone medical and I’m the only family they have. I have contact with their health executor who warned me this morning of the sudden change (I spoke to my relative on Friday) but all the time my relative is fully aware and coherent the executor has no more information than me.

I feel lost. I know time is now likely very limited but I have no idea how long or what’s going to happen and no one I can ask.

Bloody vote function 😩

Unfortunately no one will be able to answer these questions for you. It's the awful saying of how long is a piece of string. As a nurse that has previously worked in palliative care no 'end' is ever the same. Who is your relatives next of kin??

I’ve no idea, she lost her brother and husband, no children and no other family are in any form of contact with her and haven’t been for years. She has given power or attorney both for health and for her estate to her friend who is in contact with me.

I understand no one will know how long, I guess I’m feeling so lost as I don’t know how things progress, what to expect as she gets more unwell. She’s refusing hospital treatment but is on various medications including oxygen and steroids. She’s mobile but limited with a walker and gets very out of breath.

The distance is making it so much harder.

Your relative will need to make plans regarding where they wish to be cared for as it sounds as though the heart failure is worsening. Do they have a district nurse going in? They will need some nursing towards the end and a care home or hospice can provide this if they're not able to remain at home.

Thank you for responding, it’s good just to be able to talk about it. If I talk to my husband out loud I think all the upset and stress of my relative, Covid and who knows what else will pour out and illl cry a lot.

I’m afraid there is no answer. My dad is in stage 4 heart failure, he is carrying about 10st of water retention and his legs started weeping a couple of years ago. But he has no other conditions to complicate things. At the time he was given 5 years if the edema didn’t improve, 10 years if they did.

I’m sorry, but working to sort diaretics may help.

They have assisted living, so she has nurses going in, she refuses to move to an increased level of assisted living at the moment. She refuses to accept the situation and discuss her end of life plan.

Thanks Caplin, she’s been on diaretics for some time, as initially the fluid filled her lungs.

I’ve never felt so adult and not ready to adult in my life.

I’m sorry for your dad too, it’s so hard.

She may not need to move out her home and can be treated there with support. The best outcome will be for her to be made comfortable. If her friend has POA for health then she will be the best contact for any information. Can you not set up a video call at all??

My father had this condition and this was what it was like towards the end, although he had other conditions too. He slept a lot and had reduced kidney function too, as well as the oedema which caused mobility problems. It may be that your relative is given a catheter in order to assist the constant need to urinate which is a feature of the drugs used to treat heart failure. It may be that a hospital admission is the best way to make your relative comfortable, as there is regular urination, leading to getting up at night and an increased risk of falling. Hospitals will try to arrange video calls , hopefully, but one of the symptoms is difficulty speaking / hoarseness of voice.
I am sorry you are all going through this and it’s very hard not to be able to visit hospitals at the moment and be with our loved ones when they need us the most. Perhaps write your relative a letter so they know how much you are thinking about them?

There is a facility inside the home that she can be moved to for more intense care, she doesn't want to go into the wing though as she says people never come out.

When she was in hospital earlier in the year she had a catheter then. I don't think she will entertain any intervention at this stage but is most put out the optician can't help her eyesight.

Apparently she was brighter yesterday evening, communication is made more difficult as we have quite a large time difference, she really is on the other side of the world, but it makes no difference, if she was next door we wouldn't be able to see each other, I'm shielded and care homes are locked down.

She is incredibly sharp, and very aware of her situation but refuses to accept it and having treatment would confirm it, if that makes sense.

Thank you to everyone for their responses.