DM going downhill fast but blood tests & investigations are coming up with nothing…

[Mini712]

In the last 6 months my 79 year old DM has gone from being reasonable well to now hardly eating, breathless and lethargic. She finds it difficult to stand or walk for more than a couple of minutes. She spends all day on the sofa & is sleeping a lot. She is also very disengaged with anything or anyone. 81 year old DF is now having to do all the chores and is struggling.

DM has had blood tests, a CT scan, colonoscopy & various heart scans but nothing life threatening has been discovered. She has atrial fibrillation & leaky heart valves but she has had this for years & the cardiologist says her condition is being well managed and her heart isn’t that bad.

Good news that nothing sinister has been found but where do we go from here? She is literally wasting away before our eyes.

I have also noticed that she has memory issues and may have early dementia.

Any advice would be much appreciated❤️.

What’s her blood oxygenation like?

@Dolphinnoises
That was ok too, 97%

OP I have a very similar situation with my DM. She's been deteriorating for a bit longer (three or four years rather than months), but she's also only late seventies. She's got a raft of health issues (sleep, digestion, balance, breathing related), but endless tests have identified no causes. She's anxious and depressed, and now spends a lot of time in bed. I'm also quite sure she has dementia (struggles to finish a sentence, very bad memory), but the NHS appears to have no interest in diagnosing this.

It's a very hard situation to help with, particularly as my dad (who's slightly older but was always physically and mentally fine) is now starting to decline. He seems physically a little more frail, and he's less able to get a handle on mum's medical issues than before.

Like your DP, mine seem to assume that mum will at some point be 'cured' of at least some of her issues, which I think is highly unlikely. They categorically oppose any form of help - through a combination of quiet stubbornness and denial - a fear that getting in help us for old people and will be a turning point towards inexorable decline. They genuinely appreciate my concern, but they want me to keep being their daughter not their manager.

They've both had their first fall in the last few weeks - fortunately no serious consequences, but it could have been very different. To be honest, I'm at despairing point. They have too much capacity for me to take any forced action, but I mourn the fact that their life is harder and more precarious than it could be with a bit of help, and I know full well that it's only a matter of time before a proper crisis, at which point I will have to decide how involved I'm prepared to get to pick up the pieces (I work full time and live a way away). Tbh I'm just waiting for the phone call.

Can you also adk for a medication review? My Mum often has to have dosage of this or that reduced as what was the right amount when prescribed 6 years ago can become effectively a higher dose and therefore too much as her metabolism slows. And a lot of heart and bp meds make you tired.

However the sudden decline does also make me wonder if there is something like cancer going on with her - assume they have screened for blood cancers too though ? 🤷

Certainly dementia can disconnect people from their appetite and other physical signals, so do raise that too. Is she communicating at all? Does she seem worried about her health herself?

Can you persuade Dad to get a cleaner in "temporarily" just to "give him a bit of a break"?

Very sorry this is happening, it sounds so worrying for you and df.

@sidge so what is the cut off age where we should stop pushing for diagnosis & treatment? Should we just withdraw all medical treatment when people get to eg 80?!

Thank you @girlfromthesouthcountry . My heart goes out to you. I know exactly how you feel. You end up spending so much of your time and energy worrying about DPs, it’s exhausting.

I have been trying to persuade DP to move closer for years but DF has always been totally against the idea. Now, he is on his own trying to look after Mum and the up keep of a big bungalow and garden with no support but “ they aren’t at that stage yet” to get outside help!

Breathlessness could be anemia. Can she take liquid iron in orange juice?

a simple thing that might make her feel a bit better day to day

Ah ok if it was a cancer pathway then it probably would have been with contrast. That’s good news. I do think then it’s more likely to be dementia related, unfortunately

In many cases the treatments for diseases such as cancer are very, very hard on the body, and elderly people won’t be fit enough to cope. We wouldn’t consider some surgeries for elderly patients as they are unlikely to cope with the procedure.

I can understand why you want to pursue a diagnosis. But I agree with the above comment that even if there is a physical reason for her decline a diagnosis may not actually help, except in the sense that you would then know what it was. She may be too frail to cope with the treatment.

When my mother's dementia was fairly advanced (immobile, disengaged, having to be fed, sleeping a lot) she had a small stroke. Everyone was in agreement (me, the paramedics, the GP, the care home) that treatment or even a hospital visit was not in her best interests, and she was 'made comfortable' in the care home.

Don’t be daft, I never said anything about a “cut off age” or withdrawing all medical treatment. I’m not a proponent of euthanasia 🙄🙄

But with advances in medicine and people becoming significantly older than they used to be we forget that the human body rarely functions well for 80+ years. Of course you see outliers of people climbing mountains and cycling round their village aged 85 but they are the minority.

I see it all the time - a cascade of interventions, polypharmacy, rapid decline in older people, frantic families. The sad reality is that people age and die. Rather than sounding brutal I feel that I am realistic.

My own mother is deteriorating rapidly aged 78. My focus is ensuring she is safe, happy and supported rather than pushing her back to the GP regularly, unless of course she is acutely unwell such as a chest or urine infection.

I'll just add to what @Sidge has said, even if you have a very fit 80 Yr old, and 80 Yr old body cannot bounce back from a serious illness in the way a 40 Yr old or even a 60 Yr old can.

In my own family my DF was a super fit 74 Yr old with no health problems. He never properly recovered from major cancer surgery and died a year later.

So there isn't an age cut off but as we age problems become less fixable.

I'm watching with interest as I am in a similar situation. Both the memory loss and fatigue began fairly abruptly about 9 months ago and the latter has been getting significantly worse since then. Then she experienced chest pain a few weeks ago and went into A&E. After pretty thorough tests they couldn't find any explanation for the pain so she came home. A GP suggested she be admitted to hospital for monitoring, but DM was not keen. She assumed she would die any day and had made her peace with that but she's still here 3 weeks on.

Like you, the physical symptoms seemed more serious than the memory loss (and it's tricky to bring up memory loss) so DF didn't push it.

It's so hard to know what to do, whether to try and make the best of the situation or push for further investigations (especially when that's not what she really wants). And it's exhausting, so I really do sympathise!

Could she tolerate those complan/build up juices or shakes? Is she drinking enough water? Lack of water can cause significant issues for the elderly.

My stepdad was always fit, walked for miles ate well etc. He developed an autoimmune condition which is managed but it just aged him.he is mid 70s and spends much of his time "having a lie down". It is sad to see.

Have you explored alternative medicine? Remedies in Ayurveda or Chinese medicine are very good for strength gain, increasing energy, and other mild symptoms. It is not a replacement for any tablets etc. but supplementary with no side effects.

I would ask for a cognitive assessment from the Old Age Psychiatry Team She may be suffering from a depression, which is treatable. They will also assess for Dementia. The Psychiatrist will also recommend any physical tests he/she may think to be relevant.

Yes, older people sometimes do just give up, in preparation to die. BUT, that absolutely doesn't mean that others should give up on their behalf.

A diagnosis is not necessarily about seeking treatment - it’s knowing how to manage the situation and what help to access, as well as having some idea of how long you may be dealing with it. My mum was like this several times and got somewhat better before she reached end of life. She had a few TIAs which would take weeks or months to make some recovery. Same kind of symptoms - sleepy and no appetite but then she would rally round - never fully recovering to the previous level but better. It can be a long, slow, stepped decline. Perhaps they should have done a head CT? Sending sympathy to you all.

I know everyone is different but from relatively well to hardly eating sounds like it might be depression. My experience of aging is there is a falling lots stage before real decline. It seems too early and sudden.

Breathless does sound like heart or lungs, I assume BP is OK. Have they tried nebulisers to help her breathing?

Urinary tract infections can also be very debilitating and cause mental confusion in older people.

@FieryA there are frequently terrible side effects from unregulated medicine, which is why there is regulation of medicine at all. High doses of unregulated steroids in those meds might result in appetite increases or other things you might want, but they’d come at a cost. I think it’s incredibly irreponsible to recommend that sort of stuff.

I don't know what you are talking about. I'm not asking OP to buy medicines from some dodgy online store. I suggested trying alternative medicine from certified doctors or practitioners. My own aged father has experienced great benefits from Ayurveda, after his cancer surgery. There are no steroids in it. If you don't know about something, don't unnecessarily spread misinformation.

At 79, OP, I think I'd focus on making sure that she's well looked after and on only essential medication. I worked in elderly care for many years, and saw a fair few relatives desperately pushing for tests, answers and medications that rarely helped. Our bodies start slowing down at some point, and if the GP hasn't found anything, I would accept it for what it is and just focus on what's in front of you. I'd also add in that my DH has got AF and is on Bisoprolol - it makes him very very tired and sluggish at times.

I lost my Dad 2 years ago. The road to acceptance is a long and troubling journey.

Have they checked her calcium levels

It sounds as though she is coming naturally to the end of her life, should that be now or a year down the line. Sometimes people dont need a "cause/reason". Apologies if this sounds harsh, sometimes families find it easier to have a cause/blame.