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Elderly parents

89yo Mum severe and worsening fatigue - do we just accept its her age/health?

46 replies

MaryMargaret · 03/07/2022 19:10

Mum lives alone and independently bar visits from me or DSis every 2-3 weeks or so. She has COPD and early heart failure, also being treated for a heart arrthymia, so is on loads of medications.

She has grow steadily less able to do active things over the past few years - she can do so much then suddenly becomes catastrophically tired and feels dreadful, gets an unpleasant headache, and can be wiped out - at worst, for several days. How much she can do before that happens has been dwindling slowly for years, but now, is rapidly diminishing to the point where I fear she won't be able to carry on independently - and more to the point, I fear she won't be able to get any pleasure out of life at all.

She has talked to both her GP and cardiologist about this but they have never really been able to explain it- they order ecgs etc and say nothing much has changed.

She isn't on oxygen as her sats are OK, and she hasn't got a lot of fluid retention etc either.

My hunch is that it is probably an effect of her many many medications, combined with the fact that the less she does, the less she can do. But it is not for the want of trying, she isn't lazy - she is constantly having to 'titrate' what she can do vs how much she has in the tank before she regrets doing 'just a bit too much'.

She is trying to arrange to get a cleaner coming in, though organising that in itself is a dauting (exhausting) prospect for her now. But with things changing so fast, not sure how long even that would keep her going.

Does anyone recognise this? - in particular, in association with heart failure (or any of the other things she has). Just looking for similar experiences really - I am not madly hopeful there is much anyone can do, but thought it was worth asking.

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Crucible · 05/07/2022 15:52

I'm looking at lots of elderly care things (re my Dad). I've just found out about Jelly Drops, invented by a young man in 2018 for his grandma who had dementia and it was difficult to help her hydrate. Would your even feel only a little better if she had more fluids on board maybe? They contain 95%water and electrolytes too (I'd be careful about making sure this is OK with all her meds)

Re vitamin D, when my mum was in her last months, our GP was a total shit and didn't want to prescribe her the high doses that she needed. It was completely unspoken, but vit D is very expensive and I couldn't help thinking he felt it was 'wasted' on her. He controls the budget of the whole practice. Sorry to any GP's but yes, this is what kept happening. The admin staff used to get the locum doc to sign off her supply.. Defintely check her vit D levels. It can be so difficult to get them to cough up! Good luck to your mum. X

MaryMargaret · 05/07/2022 21:42

Thanks crucible - I'll make sure she gets a vit D test done as I know you don't want either too much or too little. And also iron and B12 I think. She has had trouble with her electrolytes before due to one or other medication but I think they always check that now. I'm sure if those are messed up you would feel vile, wouldn't you.

I don't think hydration is an issue, she is very systematic with her teas, decaff coffee, soft drink at lunchtime, herbal tea at night routine - and she has a science background so knows what colour her pee should be..

I do wonder if ageism has played a part in her treatment - but tbf the GP practice seem quite attentive.

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Crucible · 05/07/2022 21:48

I'll be thinking of you and wishing you both well @MaryMargaret@MaryMargaret

Crucible · 05/07/2022 21:49

I don't know why the @ posted twice...

cobden28 · 05/07/2022 21:55

I'm 67 and have heart failure so can confirm that you do get more tired-out more easily with this condition; also the tiredness could be a side-effect of the medications your Mum is taking.

I have a cleaner come in for an hour every other week to dust , vaccuum and clean the bathroom. Contact your local branch of Age Concern to see if they have a Help At Home service, which is where my cleaner comes from. Age Concern do conduct proper checks before they employ their staff so I can reccommend the service as being helpful to me.

MaryMargaret · 05/07/2022 22:05

Thank you Cobden and Crucible. We have already contacted age concern and sadly they don't have anyone local to my DM, but she is following up a recommendation from a neighbour at present. We do need someone to come in regularly between mine and dsis' visits, and tbh I am not that young any more myself so it takes me a while to get around the house properly. Really Mum has done amazingly well until very recently, but just lately there are more and more days when she can only do the minimum of up dressed eat and drink, dishwasher and loo. So obviously we need to start addressing what to do when that is too much as well, as it will surely happen.

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RockinHorseShit · 05/07/2022 23:48

B12 deficiency is very common in the elderly as the ability to process it diminishes after 50/60. It could explain symptoms & isn't part of a full blood count either, plus in my experience, too many GPS don't always understand the results of testing. So even if she has been tested, it's worth asking her results & looking into it further

MaryMargaret · 06/07/2022 07:55

That's very helpful, thanks Rockin, I'll make sure she asks for B12 to be done

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MaryMargaret · 11/07/2022 22:13

Just a little update to say mum will ask about B12 etc. She was feeling less awful this weekend: the unpredictability makes it a bit baffling and makes it feel like 'there must be a fixable reason' so frustrating that noone has answers so far - but of course its great she still has good days.

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Perfectlystill · 11/07/2022 22:29

Following as my my is a couple of years younger with COPD and swelling legs and she is slowing down too.

It is pretty heartbreaking OP. Strength to you.

Crucible · 11/07/2022 22:31

Glad to hear that 💐

MaryMargaret · 17/08/2022 16:55

Hi I just wanted to come back to give quite a cheerful update. Mum had a very detailed review with a (new and keen!) GP who suggested she tried stopping the beta-blocker she was taking, which she has done - tapered over a few weeks - and she is really a lot better. Her resting heart rate has gone back up to her previous normal (which I'm sure she needs), but not her blood pressure, so it doesn't really seem she needed them.

It really is like having her back, she's so much livelier sounding, and so much more cheerful. She still gets tired but not the sudden 'crashes' she was having before. And she has restarted her 'little walks' - literally just to the corner, but she hadn't even been able to do that recently.

Also the cleaner has now started - and of course she really likes her 😁

Sadly the cat is no more, but she suddenly went downhill and was failing to make the tray or be able to walk properly. Bless her, dSis took her to the vet for the final offices. But even that was the 'right time' and not 'too soon', so all in all it's been really positive.

So frustrating that it took so long to work out what was making her feel so bad though. She basically worked it out for herself by reading through all the side effects of her medications and noting which ones meantioned fatigue. When she saw it was so many of them, she was very keen to have that review.

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Crucible · 17/08/2022 17:47

You must be so relieved, good on your Mum for being so vigilant on the side effects. Getting back out and about will do the power of good. This is such a great update. Best wishes to you both.

goldfinchonthelawn · 17/08/2022 17:50

What a lovely update OP. So glad she has perked up.

ValerieDoonican · 17/08/2022 18:01

Thank you both for your good wishes! 😊

MaryMargaret · 17/08/2022 18:03

And yes, she told me happily how the postwoman had stopped as she passed to chat and say how nice it was to see Mum out and about again - its a friendly little road, and she had been missing these little chats in passing. (heh name change fiail there lol)

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AnSionnachGlic · 17/08/2022 18:27

That is such a positive update...you must be so relieved. However, unfortunately there will be a steady decline. Now might be a good time to discuss more help for your Mum( as she's more energy to think about it). My mum is 81 and has Heart Failure, Pulmonary hypertension and now Pulmonary Fibrosis. She was diagnosed 3 years ago. Over the last 2 years there has been a steady decline. She lives alone, nearby, and for last 2 years has hour of homehelp morning and night. She now needs assistance to dress and shower but is perfect mentally. She has had swelling in her legs but is on diuretics for that. Her bedroom / ensuite is downstairs and she can no longer manage steps. Unfortunately, over last couple of months her energy has been steadily decreasing. She is also down to 6 1/2 stone even though she has meals delivered daily and assures me she's eating them. The carers are excellent and also do any chores she needs doing. I call daily and do her shopping and bring her to her medical appointments. At first she resisted all this help but she is very glad that it is in place now. It is terrible to see her fading away and now she is breathless with talking. However she refuses to use oxygen, even though the doctor says it would be of benefit to her. Unfortunately, MaryMargaret, it is a steady decline and my advice would be to get help structures in place now. My mother has a fear of ending up in a nursing home so I am doing everything to try and not let that happen.

MaryMargaret · 17/08/2022 23:37

Thanks AnSionnach - that must be tough and we know we may face similar in time. Me and dsis are so pleased the cleaner has worked out well as it is making the inevitable care just a slightly smaller step.
Mum insists her heart failure isn't progressing (she does see a cardiologist regularly) - and its true she doesn't have a lot more breathlessness or leg swelling than she had 5 years ago, say, but one way or another she's going to need more help as time goes by. If it came to it she does have friends in retirement communities who are happy so she isn't completely averse to the idea , but of course it might not be the same if she has more care needs. And some of her friends are a fair bit wealthier than her!

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BloodyCamping · 17/08/2022 23:56

What are her b12 levels? May need to request a test. Do not use b12 tablets until she has been tested, they can skewer results to hide a b12 deficiency. Often b12 injections are required to resolve a b12 deficiency. The U.K. has a very low acceptable range, so a person can be symptomatic but fobbed off by their Gp

BloodyCamping · 17/08/2022 23:57

Also D3 and iron might be good to test, also thyroid

MaryMargaret · 18/08/2022 19:36

Ta camping, will bear that in mind if she is struggling again.

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