1. LazyZog

    LazyZog Registered User

    Apr 7, 2018
    21
    Mum is currently awaiting a Memory Clinic appointment and has had COPD for around 15 years.
    Recently the COPD and memory issues both seem to have gotten worse, to the point that any exertion makes her breathless & reason and logic seem to be on the way out. Due to the situation with her chest she's now convinced she's not going to be here in three years time. Being unable to breathe must be awful for her, but I can't help thinking her lungs or heart giving up relatively quickly & painlessly would be better than the memory issues alternative of not knowing / remembering anything or worse, the COPD possible worse case scenario of intubation & life support etc.
    Before I get sidetracked, are there others out there caring for someone with failing lungs and memory?
     
  2. Kevinl

    Kevinl Registered User

    Aug 24, 2013
    4,739
    Salford
    My wife's got COPD and is after being sectioned it's probably got better as she no longer is allowed to smoke, neither conditions gets better but her COPD hasn't got a whole lot worse where her AZ has, much worse.
    K
     
  3. nicoise

    nicoise Registered User

    Jun 29, 2010
    1,807
    Can I ask the obvious, have you raised the worsening COPD with her GP? It is one of those conditions that can worsen without obvious external cause, and respiratory infections that you or I would shrug off can make breathing very much more difficult, but new or increased medications can give relief - don’t underestimate how awful she will be feeling if her breathing is very bad. It is also well known that seemingly innocuous infections even down to UTIs cause the signs of dementia to become shockingly worse; those usually improve with antibiotics, not necessarily always to where things had been.

    There is a harsh reality with COPD that it does only worsen, and the likelihood of repeated almost spontaneous chest infections with the threat of turning to pneumonia easily is the usual path. Many sufferers take antibiotics as a matter of course. Whether to treat an infection robustly with antibiotics might be a decision that arises, but relief from the symptoms and the anxiety it causes is certainly within the realm of the GP.
     
  4. Ann Mac

    Ann Mac Registered User

    Oct 17, 2013
    3,701
    My Mum in law also has COPD, and dementia, with the COPD being diagnosed I think about 8 or 10 years before the dementia diagnosis. The combination of the two did cause some issues at times.

    We had problems, when Mil was in the early mid-stages and still living in her own home, with her over-using one of her inhalers, that was only supposed to be used 'when needed' and a maximum of 4 times a day. Mil took to using it far more than this, often going through a months supply in a week or less - and she was amazingly creative and crafty about persuading the GP or chemist to issue more of the capsules. You could explain till you were blue in the face that she was going to make herself ill if she didn't take it only as prescribed, and she would either flatly deny over-using it, or insist that 'this doctor she had been to see' had told her she could use it as often as she wanted. When I took her to her COPD review, and told the practice nurse (quietly) about the issue, the nurse spent ages talking to Mil about mis-using/over-using it - Mil pulled the perfect hostess mode out, and the nurse was quite satisfied that she now understood and the issue was resolved!

    We also went through a stage where Mil (who also has angina) would have both this inhaler and her GTN spray close to hand, and would often use the GTN when she felt breathless, or the inhaler if she was having an angina attack. When - not surprsingly - this failed to bring her any relief, she would panic, and she dialled 999 on numerous occasions.

    These problems were only resolved when we moved Mil in with us. There was no reasoning with her, and the failing memory meant that even if she was initially receptive to our concerns, she would soon forget.

    When she moved in, I took over management of both the inhaler and the GTN, and that caused different issues for a while. Mil would furiously demand that I give them to her to manage, and if she did get hold of one or the other, would hide it about her person and go back to using over-using it. At this point she was frequently insisting that these illnesses were going to kill her (though she wasn't obsessive about this) and I would be accused of wanting her to 'die as soon as possible' by either not letting have hold of the inhalers/GTN herself or because I would refuse to let her use them on demand - and she could 'demand' several times an hour. At the secure day centre that she eventually went to, she even managed on a couple of occasions, to nab her inhaler/spray from the medication trolley, and I would later find it either in her handbag - or hidden in her bra, at bedtime!

    As the dementia worsened, these problems faded. But what was always horrible was the breathlessness you describe your Mum experiencing, when she got agitated, and Mil got agitated a lot. It was scary, and as she was very resistent to any form of distraction or compassionate communication, all I could do was give the inhaler (if she would allow me to) and continue to try and calm her. Thankfully, as I said, we didn't have the scenario you describe, with her obsessing over going to die at this stage, and I can only feel for you in trying to reassure and deal with that, as well as the agitation .

    Mil is now in an EMI nursing home, and the dementia has progressed massively. As its progressed, her awareness of the COPD (and angina) has slowly gone. I don't think she is aware at all of any of her physical health problems. Over the last several months, its clear the COPD is worsening and she is often wheezy - but, she either seems oblivious to the breathing, or she may sometimes attribute it to having 'had a cold'. She still has frequent bouts of agitation (in fact, they have got worse) and staff have said that her breathing remains a big concern when she is 'kicking off'. But, there is nothing they can do. Medication to help with the aggression/agitation doesn't work with her - in fact some that have been tried actually make her worse - and all they can do is try to calm her and try to persuade her to use the inhaler when it's needed (she is becomming increasingly non-compliant with taking meds of any sort).

    I have to say that overall though, the COPD (and the angina, and diabetes, and asthma!) have tended to take a back seat to the dementia. And I am like you - I actually think it would be far kinder if she had a sudden and swift heart attack, or if one of her now increasingly frequent chest infections would take her quickly and peacefully xxxx
     
  5. LazyZog

    LazyZog Registered User

    Apr 7, 2018
    21


    Hello @nicoise, thanks for the reply :).
    Despite not seeing the point as there's 'nothing he can do' due to her being on the maximum therapy (has been for years), mum's mentioned it to the GP & I also mentioned it at my meds review yesterday. He just said it takes longer to recover from exacerbations as time goes on (which we know). Her last hospital admission was Aug 2016 for five days, which she partly recovered from in maybe a week or two. The most recent a&e trip was 4 hours & home a month ago and there's not been too much improvement yet.
    She has a 'rescue pack' of antibiotics and steroids but the results of blood and urine tests recently came back fine - no chest infection, pneumonia or UTI.
    The GP is aware that it 'gets her down' but hasn't suggested much more than 'try and keep her positive', maybe because he thinks the antidepressants she's been on for years at the same dose, still work, or because he's waiting to be asked to do something. I don't know.
     
  6. nicoise

    nicoise Registered User

    Jun 29, 2010
    1,807
    #6 nicoise, May 3, 2018
    Last edited: May 3, 2018
    Well, it certainly seems you are as on top of this as you can be. And Ann Mac’s reply echoes your issues with the chronic illness/dementia overlap, where working out which ailment is taking the lead is the conundrum. But as used to be said, “pneumonia is the old man’s friend”, I think holds strong especially as far as dementia is concerned. I guess all you can do is keep a watchful eye and act to reduce anxiety and discomfort when needed, and what will be will be....
     
  7. LazyZog

    LazyZog Registered User

    Apr 7, 2018
    21
    (apologies in advance if this doesn't make too much sense)

    Thanks for your replies @Kevinl & @Ann Mac :).

    Have either of you had experience of filling out the memory clinic's initial assessment informant questionnaires, specifically the one that asks about daily living activities like driving and dressing?
    I have no idea which way to approach it. There's a lot Mum can't do because of her chest that has nothing to do with her memory. So from a memory point of view those things are NA but from a general point of view she can't do them, so my dilemma is which option do I pick?
    So for instance, the question on whether or not she does gardening, needs promoting, or can't garden. She can't garden, but because of her chest, not her memory. So would that be NA because it's not a memory issue or can't garden because she can't, regardless of the reason?
    Anyone else who has an opinion feel free to jump in, I don't want you two to feel like I'm putting you on the spot.
    (I feel like that was a bit repetitive, sorry! I'll go to bed and confuse you all some more on the morrow)
     
  8. Lily1

    Lily1 Registered User

    Feb 6, 2018
    30
    Hi @LazyZof , my mum’s been on oxygen for a number of years, COPD and PF. She’s now been diagnosed as having Alzheimer’s following a bout of delirium which lasted a few months. She’s become v fragile and weak, but, not as distressed over her breathing and that seems to be helping her breathing too. We did have to step in regarding meds, inhalers would be drained, meds hidden or not taken and now she’s given them at the right time, we always say what each med is for to her. She’s now on nebs which can be better managed than sucking in an inhaler but I use a spacer and inhaler if she needs. Maybe have a chat with the GP and see if your mums meds can come in a blister pack and then as you are at work, real life does make things tricky for us doesn’t it, see if the Social Worker can get an assessment done so that carers can be there to give meds at the right time? Anxiety remains an issue, it seems to go hand in hand with copd, mums specialist calls it an impending sense of doom which affects sufferers and as she’s not aware of memory issues that causes anxiety too. We’re about to start Memantine with her which has been recommended after her first memory clinic appointment. Don’t be too worried about that form, the memory clinic will be able to see your mum as she is and like my mum they know how to deal/ handle weakness and lung issues it’s all part of the same person after all! The memory clinic itself will be so beneficial for you as well, they will listen to you and conduct assessments on your mum to see where she is. Hang in there, it’s not easy but you are doing all you can!
     
  9. Ann Mac

    Ann Mac Registered User

    Oct 17, 2013
    3,701

    Hi LazyZog - yes, when Mil was admitted to the EMI nursing ward for assessment, I had to fill out a long questionaire, and with some of the questions, I would answer (for example) that she could not garden, but add/attach a note at the end stating that physical limitations due to illness or injury (she had damaged both her shoulder and knee in falls years ago, as well as the COPD/angina having an impact) made it difficult to know what impact the dementia would have on her ability to do certain tasks, as the physical problems stopped her anyway. I felt that was the most honest answer, because unless our pwd actually attempts to 'do' things, we have no way of knowing if the dementia does impair their ability or not. Mil could tell me how to make a sandwich, for example - so one would assume she could manage that task - but in reality, she couldn't even work out how to spread the butter on the bread when she tried. So if all she could do was tell me how she would tackle something, that didn't mean she actually could.

    I don't know if that makes sense, but I hope it helps xxx
     

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