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❤️.

Being honest I would say she is probably nearing the end of her life.

Have they got some help going in, a cleaner for the main work/changing bedding etc? Maybe someone to make them an evening meal?

I agree that not really eating or moving around and sleeping a lot sounds perhaps like things are progressing towards the last months. I’m so sorry. But I’m also not a doctor. What does her GP say?

This is often what happens with the frail elderly - you can't give it one diagnosis but they are just obviously getting worse. If you have noticed memory issues she almost certainly has dementia as well.

I think you need to start planning for this being the end, rather than a setback which can be cured - think about what care she needs so your DF isn't doing it, how much value there is in her going to more appointments, whether she wants to be admitted to hospital again or stay at home, a DNACPR if she hasn't already got one and so on.

I just think shes elderly and tired really she could maybe be depressed or just fed up with life and it is coming out as physical illness.

.my parents are quite sedentary now they live on ready meals and oven food and sleep a lot

She’s 79. Sometimes we just get old and die. You don’t necessarily go anywhere. Sorry if that sounds harsh but after 35 years nursing we see this a lot.
I would be looking to arrange carers for your DF, today is the best he will ever be too. Start to think longer term. Have they got wills, done POA etc? What were their plans for coping as they aged?
Agree with considering the DNR ASAP.

@PermanentTemporary thank you for your reply.

I have suggested this to them but they both think DM will get better and DF is coping (just about). So frustrating, especially as I live 3 hours away so can’t just pop round.

GP appointment in 2 weeks time🙄. I wondered if I wrote a letter to GP this might help?

OK she’s getting on in years but she’s not ancient and it sounds like this has been a quite rapid decline. I think they’re missing something. Have the bloods included iron and B12? B12 deficiency can present like this when it is severe. I’d check that it’s been included. I’d keep pushing to be honest.

@DemonsandMosquitoes
Thank you for taking the time comment. I think I’m probably in denial too. It just seems such a quick decline without an underlying cause.

Thankfully POA was completed last year.

@PoppySaidYesIKnow
That’s how I feel. Think we should ask for some more blood tests.

She is barely eating anything so probably lacking in B12.

Have you seen her actual results, for eg on the nhs ap? Sometimes you can be told by GP that things are ‘fine’ without being told numbers and they’re just on the edge of the normal range so don’t trigger the abnormal result but are still causing an issue. I’ve had this previously with ferritin, vitamin d, folate and b12. They eventually dropped into abnormal but I wish they’d been dealt with sooner.

I think they are missing something. My dad had sepsis twice before they diagnosed mds. They gave him years to live but he got sepsis twice more and the GP just said he was dehydrated. I was the only way he got to hospital by driving down 4 hours as GPS refused to consider sepsis each time. She will be frail for a reason thats not just related to age.

Which area of her body did they do the CT scan of?

Push for what?

She’s been well investigated, she’s a grand age, and I’d be focusing more on quality of life and practical support now rather than non stop investigations that are potentially intrusive and painful and are unlikely to change any outcome.

I don’t mean to sound brutal but we seem to forget that people age and die. I’m a nurse of 30 years and see this all the time - families pushing for investigations and answers, and don’t always understand that often there are no answers. Your loved one is old and organs and systems start failing, and we need to recognise that and support that process realistically.

I’m so sorry to hear this about your DM. I have a similar situation with mine who is 81. Same heart issues, same investigations, although she does still walk and relatively active in that respect. Hardly eating and no appetite, and memory issues too. I also have the same distance involved because they live miles away from any of us which is hugely unhelpful.

No useful advice other than I’m sorry you’re going through this and hopefully given the rapid decline you might be able to find a reason rather than just natural old age.

@temproasted thank you❤️

@UpUpAwayz

CT was of chest, abdomen & pelvis

@Mini712 distance makes it all so much more difficult. Sounds like appropriate investigations have been done and what is left is recognition of increasing age related frailty. Totally agree with pp that sadly today is the best either of them are likely to be. Time to concentrate on quality not quantity of life I would say. Favourite foods and drinks, days out if able, cleaner and food delivery to reduce chores maybe?

My grandmother was like this towards the end, although she was a decade older. She had no diagnosed physical ailments but she did have dementia.

You say you suspect ‘early dementia’ but IME it is unusual to notice early dementia because the person concerned conceals things they can’t do, often by getting their spouse to do them. Once you notice dementia, it tends to be relatively advanced. People with dementia can withdraw and disengage because interacting is a huge effort and very tiring. Spending a lot of time ‘resting’ means you can conceal your inability to cope. So given they have not found any physical reason for her decline, dementia is a possibility.

Thank you @catofglory I’ll take that on board.

Because Mum’s physical health has been the main concern, the memory issues have not been mentioned to the GP but maybe we need to address this too as the physical decline maybe being caused by the mental decline.

I think I’m going to write to the GP about this so they are aware of it before DM’s appointment.

Was this done with or without contrast?
sorry to ask but my dad had multiple scans done but because none of them were with contrast, and they couldn’t see any masses or tumours, they were reported as normal. It turned out he actually had an aggressive cancer in the lining of his lungs which doesn’t show as a large mass but would have shown on a CT with contrast. Instead he was given two chest X-rays and one CT without contrast so was given the all clear. Within 6 months it had spread to his spine and liver. We never found out why he wasn’t given contrast on the CT but it may have been because he never had a cough or shortness of breath nobody suspected lung cancer and they seemed to be looking for digestive issues as the cause for his discomfort.

Sorry to derail. Just mentioning as scans don’t always mean they’ve checked for the right things. Does she have any other neurological symptoms like dizziness or unsteadiness?

This.

I think it does sound brutal. Of course OP wants to rule out some other causes first, check results etc. Boards on here are full of missed diagnoses and blood results not properly checked - you’re old, it’s anxiety, it’s just peri, you’re stressed, blood results are fine even when textbook symptoms align with results etc etc. I had to push for a bloody test for a urine infection for my grandma - I was told it was probably EOL. Awful.

Hi @UpUpAwayz .

I’m not sure if was with or without contrast. She was on the 2 week pathway for bowel cancer and was just told it was clear. This something I can investigate further, thank you. X

@UpUpAwayz sorry forgot to mention, no dizziness or unsteadiness.

It sounds so like my grandmother at that age, she did have cancer in the end but a curable kind, well she could not cope with chemo or major surgery because she was too weak. Moderate to advanced dementia is a possibility too, it’s amazing how much you can cover up (I work with the elderly)