How to talk about illness that can't be cured with mum

[Liz1tummypain]

Although she doesn't have dementia as such, my mother (88),.has some cognitive impairment. Within the last few weeks she's been diagnosed with aortic stenosis and she won't agree to any procedure to help it. There is no other treatment. I'm not sure how much she has taken this in.

Have you dealt with a similar situation? I don't know how to tell her when she's in discomfort that it won't get better. The breathlessness can be quite distressing.

I don't know how or whether to talk about it being incurable. I mean only when she's in a particularly bad way with it. I wouldn't talk about it in the times when she's not too bad..

I hope this makes sense.

Sorry to hear OP, that sounds very tough.

When my grandad got ill, he was quite like this. Didn’t want to talk about it, ‘it will be grand’ attitude. But when he had a GP or hospital appt, he would always listen to the nurses/doctors and go with their recommendations 😅. Could you speak to her GP and bring her in for an appt to discuss her health?

The best procedure to help Aortic Stenosis is a heart valve replacement done under general anaesthetic (aka open heart surgery). That's a massive procedure especially in an 88 year old! How do they advise the symptoms are managed if she chooses not to have any surgery? Could she have oxygen for when she's breathless? It really is her choice and you should respect her wishes. It's tough on you I know and I'm sorry that you have to go through it.

At 88. I think I'd probably a similar decision if the surgery is that invasive.

@SleepingisanArt well the odd thing is that she was discharged after a week in hospital and nobody has said anything about how she manages it. I know she's now taking a pill that eliminates liquid, plus vitamin D tablets, but otherwise I have no idea how the illness is meant to be managed. She finds it really distressing and frankly she seems scared out of her wits when she's having one of these breathlessness episodes and I just don't know what to suggest she does. All I can say is to sit still and ride it out. ( I'm always hoping that she will be able to ride it out). Thanks for the idea about oxygen. I wonder if that could help. I pleaded for an appointment today and we've been given one for week Saturday ( odd sort of GP practice allied with her usual practice), so I will raise the idea of oxygen there. Many thanks.

Yes I always knew she would decline any invasive treatment. Her sister had an op, not sure what for, and was perfectly mobile before the op, she had a stroke under the anaesthetic and then was paralysed from the waist down after the surgery.

@loropianalover thanks for your post. Sorry about what you say with your grandad. I know that I was present on several occasions in hospital when a doctor or a nurse did say that it's untreatable ( without surgery), and yet, and I'm not being condescending, still I think she has not accepted this. Or it isn't believable somehow in her world. Maybe that's a good thing, I don't know but I feel she is going to be asking me when she will get better and I just don't know how to respond to that question.

I'm sorry to hear about your Mum. It's a difficult position. Best advice is to go to the GP appointment with your Mum and try to ask as many questions as you can. You might be able to find an advice line/patient group you could ring up.

Just wanted to pick up on the medical oxygen point. My Mum is on medical oxygen for a different condition. It has to be prescribed by a medically qualified doctor - GP or respiratory specialist. It's a major thing to accept into your home. There's a fair amount of storage to sort out and you have to get to grips with how it works and the routine maintenance to keep it working safely and effectively.

There are risks. Having oxygen cylinders in your home is a fire risk so you are told to notify your local fire station. Going anywhere near an open flame (e.g. gas hob) within the first half hour after taking oxygen is a fire risk. Nobody can smoke in the home (fire risk).

My Mum is on an oxygen concentrator machine. This takes air in and extracts the oxygen, pushing it down a tube so it can go into my Mum's nose. The tubing is a trip hazard and limits movement while she is on the oxygen. It has probably kept her alive for the last few months but it's quite a performance.

I'd be surprised at 88 if she genuinely thought she was going to get better?
My mother had a similar diagnosis. Surgery was offered when she was in her early 70s but at that time she had no symptoms. Ten years later she was like your mum and eventually died of heart failure.
The shortness of breath affected her in every way and her mobility disappeared completely. Thinking about it the fear was awful and only got worse. We also felt that medical professionals didn't take it seriously. Panic attack for the first time at 85? No, just unable to breathe.

Sorry you have this to face. Do you have LPA in place? My mother never lost her faculties but did need us to advocate for her at the end.

she doesnt need oxygen tanks if she needs oxygen at home, she can have a portable oxygen concentrator. They are easily moved around and then there is no fire risk etc

There is still a fire risk, even with a concentrator. The oxygen clings to clothing and assuming my Mum's set up is typical she has a large cylinder in the house in case of a power cut and a small one in case she has to travel.

@Boope thanks for your post. I'm sorry to read about what you went through with your mum.

Perhaps I'm misunderstanding things. Although she was actually a nurse so must have nursed people with incurable problems, still yesterday she asked me how long she was going to keep getting the breathlessness attacks.

And it's strange because I wasn't with her when she collapsed 10 days or so ago in town and I think somewhere in the notes it was said she'd had a panic attack but like your mum, mine didn't suffer with these and I think it was purely the breathlessness that was the trouble. When you say " the fear was awful", I know what you mean. It's always there at the back of my mind, and perhaps hers too now.

Can I ask you if your mother was in a home towards the end? And how can you tell that a home is the best place? I'm thinking a home would be better/ kinder as she wouldn't be alone when she gets the breathlessness. But I don't know if I should be trying to extend her time in her own place by enabling it with carers, food deliveries, my brother and I visiting more frequently etc. I don't know how you know when is the right time. Can you help me please?

@Liz1tummypain I am sorry you have this to deal with. I don't know if I can help and of course I don't know your mum.
What happened with mum was a period of worsening health. We had panic alarms installed and she had OT fit all the usual things. She had a lovely "cleaner" who did little cleaning but shopped and took her about. This worked for a while. Then we got more frequent call outs, my sister and I had lots of 3am trips over (a 40 minute drive). She would fall or be so out of breath she would ring 999. She would be admitted to hospital for a day or two and then home again. She didn't want to go in a care home and so we strived to keep her at home. This coincided with me having chemo for breast cancer so it wasn't a good year.
When things came to a head she finally begged us to find a care home which we did. We visited several and found one we liked but sadly we had left it too late and she died before we could move her.
So in hindsight the biggest thing we got wrong was not arranging residential care sooner.

The other thing we found was that doctors strive to treat and what she actually needed at the end was palliative care.

Just to add that you will probably find lots of advice on here about choosing the right place.
My sister is a nurse and had a colleague who knew a lot of the homes. Someone told us to ask about staff turnover and this was an eye opener.

The place we chose had a homely feel. The owner was happy to answer all questions and their staff had been there many years.

The "nicest" place we looked at was modern and airy but when we asked about staff turnover it was clear that no-one worked there longer than a few months.
We noticed residents sitting at tables hours after breakfast has finished waiting to be helped back to their room.

Is open heart surgery the only option?

My mum had similar at 82 and had a TAVI fitted which is done by keyhole surgery under local anaesthetic. She was massively reluctant until it started making her very ill.

I'm not a cardiologist (regrettably!) but wondering if all surgical options had been explored.

Not the same I know but when FIL (84) got his terminal lung cancer diagnosis nobody said ‘you’re going to die’. The dr just told him it was lung cancer and they could only try to keep him comfortable. We didn’t talk about it and even when the Marie curie nurses came out they didn’t say it. They said something like ‘how do you feel about things?’ and he said ‘It is what it is. I take things as they come’. He was really brave. I went out and cried in the kitchen. I don’t think they need to be told in black and white terms there’s no hope necessarily at this age.

My advice to anyone would be to keep an elderly person out of a care home for as long as possible. Although my mum spent her last months in an excellent place getting her there was traumatic to say the least. Get a care call alarm, pop over when you can, get carers in as much as I'd needed. If you are self funding it might be worthwhile looking at online agencies where you can find self employed people. Agencies here charge £40 per hour, self employed £25.

Regarding the breathlessness would iron be an option?
I have CHF and was prescribed iron infusion and iron tabs to help with breathlessness.

My mother has the same health issues as yours OP and has also been told she is not a candidate for surgery (they also looked at keyhole but not viable for her).

Breathlessness and tiredness are the main issues at the moment and she has been told it will get worse over time but has not asked for details. Denial has always been her main coping tool throughout her life so fair enough.

I don’t force the discussion but equally she has been sensible about moving to sheltered accommodation (which has enhanced her social life and made her feel safe) and putting LPA etc in place.

Her GP is supportive and she is well monitored but there is not much else that can be done at the moment, though there are palliative options further down the line.

i would make sure you do practically what you can to support her (a move now is going to be easier than a move in a few months) but be guided by her.

Thanks so much for this. I'm going to follow this approach. I'm not completely sure what she's taken on board and what she hasn't so I probably won't raise it and if she does then I'll give the name of the problem and just won't dwell on it. Thanks very much pyjamas.😀

@LarkRize Sorry to hear your mother has also got this nasty condition.

Can I ask if your mum has been given this oxygen treatment? Not sure how appropriate it is for this illness.

Yes I'm continually weighing up the pros and cons of trying to get her into a home. There are ways to help her stay in her flat with different carers, shoppers, me and my brother visiting. What I worry about is the thought she might get increasingly common bouts of this horrible breathlessness whilst she's on her own. It must be very frightening when it happens and you're all alone. So many factors to weigh up.

Best wishes to you and your mum.

Yes been in similar situation - I was sent (to the residential home) to get her death wishes as she was going downhill, which I was dreading. As it turns out she died this week so we didn't have to have the conversation.

Not easy is it! Try to keep her independent as much as possible and be factual about her refusal to get treatment and what that means. Best for it all 💞

@Liz1tummypain thank you. My mother is not on oxygen (and I seem to recall it was not recommended for some reason) but she was prescribed some anti anxiety meds which have helped her. She is also more careful about her posture as the breathlessness is a lot worse in certain positions but it was trial and error initially.

The GP and cardiologist have also been very good about tweaking her meds to find the best management options so I would suggest another discussion with them if possible as there may be alternatives.

i wouldn’t underestimate the relief of being somewhere safe - there is no way my mother could live independently in a safe way now and I think she would find it very scary to be without her falls pendant and without the on-site support she has now. I would not be able to provide what she needs at the moment so don’t feel you have failed if she needs to move to more supported living.

@LarkRize thanks for your latest post. It's very helpful to me.

I will try and ask about anti anxiety meds. I wonder if they help sleep. I don't think my mum's getting much sleep because when she has these episodes for some reason they make her restless. Last night it was just gone midnight and she called me whilst having one. She isn't happy just sitting still and waiting it out. I don't understand it.

I'm sorry to keep bothering you again and again but can I ask what your mum has in terms of on-site support? How often does she have carers come in please and how did you find them? My mum wont qualify for any subsidies so I will probably need to get something set up when the council withdraw their carers in a few weeks time .

Many thanks for all your help..

Most elderly will have a degree of AS cos of calcification they likely just won't know it.

Has a TAVI been ruled out? (Tiny cut into a vessel where they feed in a new valve and ping it open), not everyone is suitable but it's an easy fix for many unsuitable for open surgery

Oxygen isn't a treatment for AS

Thanks @Destiny123 for confirming about oxygen - that fits with what we had been told.
@Liz1tummypain she has her own flat within a building with about 20 other flats all with elderly residents. She doesn’t need visits from carers at the moment but there is on-site support she can access if that changes. She already has a laundry service, a cleaner and lunch provided and they monitor for falls etc; most importantly for her there are activities and a good social life without her needing to move more than a few steps. It has been an absolute godsend as she is not ill enough for a care home but needs some daily support.

Thanks @LarkRize . I did read your post before and forgot to say thanks. I just don't know if supporting her to live at home is right. as in if it's sufficient. Some nights she is in a lot of discomfort. I will talk to her tomorrow. I expect before long she would be safer if she were in a home.
All the best for you and your mother.xx