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Mum persistently crying and sobbing. How to deal with it?

Max68

Registered User
Aug 21, 2018
113
0
Sussex
So many familiar stories here- especially when it comes to how it feels to watch the decline of someone with dementia. @Elaine65 -I've not visited my parents yet, but guilt and dread is what I feel when I call them. Rationallly, there is nothing I can do to improve their situation, but it is still awful and stressful. @Max68 I too find myself partially wishing my mum would go peacefully in her sleep, because I can't see her ever adapting to this new phase of life. Being adaptive wasn't in her personality before dementia, so I can't see it developing now. My mum is 85 and her mother, aunts and grandmother all lived well into their 90s , so I need to find a way to deal with the stress of seeing her so persistently miserable.
Couldn't have phrased it better myself. That's the hardest thing is seeing the misery and upset. Hate saying it but Covid has taken away the expectation on yourself to visit so the guilt isn't there as much because you can't go. Once things reopen again of course you look forward to seeing them but at the same time have this feeling of what are we going to see today! At Christmas we had a "decent" visit where as we had a test we could give her a hug. The last visit in January though was horrendous with tears and sobbing all the way through. I never saw my mum cry, even when dad died, before all this and now it's all she does,. If an animal was suffering like this you wouldn't put them through it. I'm not advocating euthanasia of any kind as it's an incredibly difficult subject matter and it's so difficult for doctors but I found myself asking why keep her medicated? Why give her antibiotics for something that might let her go? She is on medication for her heart etc, all the same meds that she was on prior to dementia which of course can be life saving when there is still life, independence and capacity , but when the person is going down mentally and physically why keep that medication going as it just prolongs suffering. Such a difficult discussion.
 

lollyc

Registered User
Sep 9, 2020
206
0
Couldn't have phrased it better myself. That's the hardest thing is seeing the misery and upset. Hate saying it but Covid has taken away the expectation on yourself to visit so the guilt isn't there as much because you can't go. Once things reopen again of course you look forward to seeing them but at the same time have this feeling of what are we going to see today! At Christmas we had a "decent" visit where as we had a test we could give her a hug. The last visit in January though was horrendous with tears and sobbing all the way through. I never saw my mum cry, even when dad died, before all this and now it's all she does,. If an animal was suffering like this you wouldn't put them through it. I'm not advocating euthanasia of any kind as it's an incredibly difficult subject matter and it's so difficult for doctors but I found myself asking why keep her medicated? Why give her antibiotics for something that might let her go? She is on medication for her heart etc, all the same meds that she was on prior to dementia which of course can be life saving when there is still life, independence and capacity , but when the person is going down mentally and physically why keep that medication going as it just prolongs suffering. Such a difficult discussion.
I agree. I would, quite rightly, be prosecuted for doing this to an animal.
My Mum sounds very similar to yours, and I have to question why doctors seem to want to fight tooth and nail to keep her going. To live - no, exist, because this is not living - in such a distressed state is not kindness. It seems be quantity, not quality, that matters.
 

Max68

Registered User
Aug 21, 2018
113
0
Sussex
I agree. I would, quite rightly, be prosecuted for doing this to an animal.
My Mum sounds very similar to yours, and I have to question why doctors seem to want to fight tooth and nail to keep her going. To live - no, exist, because this is not living - in such a distressed state is not kindness. It seems be quantity, not quality, that matters.
Very true. Mum has in her LPA wishes something along the lines of if she were suffering a physical illness that it was unlikely that she would recover from then she would not wish for treatment and just to be kept comfortable etc. Re Covid the decision was made to keep her at the home "but" as she may recover (which she seems to have done) the GP prescribed treatment. Re the dementia I don't think it is classed as a physical illness, or a mental one for that matter, so they treat the "symptoms" of that illness, such as the infections that they pick up, like urinary infections. I think Barbara Windsor's husband Scott made this point that dementia is treated totally differently to say something like a brain tumour, which is horrific in itself. It seems bizarre that mum is being kept alive in a state of misery and distress paying thousands of pounds a month for the privilege of that. I know the mum that she was would be absolutely horrified.
 

MartinWL

Registered User
Jun 12, 2020
720
0
@Max68 and @Elaine65 there is nothing to feel guilty about. I certainly don't want my parents' lives to be prolonged if that means making them suffer. I want them to be comfortable in advanced old age and it sounds as if you feel the same. Hoping that they will slip away without pain when the time comes is a kind thought, not awful. Any I have heard many times that people express relief when a loved one dies if they have been living with pain and suffering or in misery.
 

Max68

Registered User
Aug 21, 2018
113
0
Sussex
Well my sister had yet another horrendous visit today and it's really eating away at my sister now. I seem to have become hardened by it for some reason but my sister is really suffering seeing mum in such a bad way. Mum somehow got through Covid but not being horrible surviving that has been a curse not a blessing. Our first visit back was bizarrely wonderful where mum seemed to be doing pretty well but every visit since has been horrendous. We go once a week taking turns because both of us totally seemed to confuse mum. However it's just as bad with just one of us. Mum is constantly angry, frustrated with a lot of upset and tears and has started to forget who we are or starts having a pop at us which I accept is the illness but my sister is understandably very hurt by it. Mum is on anti depressants but they aren't doing anything. Think she has a mix of vascular/Alzheimer's but who knows for sure so no meds will work. Memory is getting far worse. Last week she asked where her dead sister was several times in 5 minutes. Know she has had a urine infection this week but it's not just that. She has fallen a couple of times as well so is definitely deteriorating to the stage where it would honestly be better for her if she just didn't have a clue about anything because knowing something is wrong must be so frightening for her. Really wish Covid had taken her. Again as I said above sounds harsh but this ain't getting any better and it could take years. Just glad dad died of a heart attack years ago because seeing mum like this would kill him. Almost just want to say to the GP to take mum of all medication and don't treat anything but I know you/they can't do that. Cruel and brutal does not even describe this illness.
 

TNJJ

Registered User
May 7, 2019
1,930
0
cornwall
Well my sister had yet another horrendous visit today and it's really eating away at my sister now. I seem to have become hardened by it for some reason but my sister is really suffering seeing mum in such a bad way. Mum somehow got through Covid but not being horrible surviving that has been a curse not a blessing. Our first visit back was bizarrely wonderful where mum seemed to be doing pretty well but every visit since has been horrendous. We go once a week taking turns because both of us totally seemed to confuse mum. However it's just as bad with just one of us. Mum is constantly angry, frustrated with a lot of upset and tears and has started to forget who we are or starts having a pop at us which I accept is the illness but my sister is understandably very hurt by it. Mum is on anti depressants but they aren't doing anything. Think she has a mix of vascular/Alzheimer's but who knows for sure so no meds will work. Memory is getting far worse. Last week she asked where her dead sister was several times in 5 minutes. Know she has had a urine infection this week but it's not just that. She has fallen a couple of times as well so is definitely deteriorating to the stage where it would honestly be better for her if she just didn't have a clue about anything because knowing something is wrong must be so frightening for her. Really wish Covid had taken her. Again as I said above sounds harsh but this ain't getting any better and it could take years. Just glad dad died of a heart attack years ago because seeing mum like this would kill him. Almost just want to say to the GP to take mum of all medication and don't treat anything but I know you/they can't do that. Cruel and brutal does not even describe this illness.
Hi. I absolutely agree with you on this. I care for dad who is 88 in June. It can be years!
 

Max68

Registered User
Aug 21, 2018
113
0
Sussex
Hi. I absolutely agree with you on this. I care for dad who is 88 in June. It can be years!
Mum's 85. It's bizarre because she doesn't want to be here and yet her body defeats Covid but destroys her with dementia. It's honestly just like some sick joke. Absolutely heart-breaking.
 

Palerider

Registered User
Aug 9, 2015
2,436
0
North West
I hate this thing called social justice, and the belief we are doing the right thing, but then I see my mum and I think differently. Life is whatever it is to whoever it belongs to. I agree watching someone fade to a disease is dreadful, but we can't impose our own value judgements on someone else, no matter how it may feel to us. People with dementia still have purpose, even if that is not what you and I think it should be, not forgetting that life is precious but enduring its problems may not be so. The question ultimately is when should our life end, but with that their will be no one answer and so you go back to where you started.

Yes it is painful but for who?
 

Max68

Registered User
Aug 21, 2018
113
0
Sussex
It's incredibly painful for both the person who has dementia and the families. Obviously it's different in what stage of dementia a person is at and how they themselves are coping. Seeing mum crying continuously, frustrated knowing her brain doesn't work (her words), not knowing where she is or what is happening to her is horrific. No words, explanations, uttering words of love or support helps at all. She is clearly in severe mental anguish that I cannot even comprehend on how that must feel. It's interesting how in her LPA she specified that if she were suffering from an illness that she would not recover from she declined any life saving treatment, but dementia slips through her wishes.
I remember watching an interview on GMB with a man who had just been diagnosed with dementia and the following week he was taking himself off to Dignitas in Switzerland. He may have been years away from major symptoms but no-one could tell him how long he would have capacity, and of course Dignitas requires you to have capacity to make your own decisions and to obviously take the cocktail yourself, so he felt he had no choice but to do what he wanted to do whilst he was still well, which is horrendous.

I'm certainly not saying I would cart mum off to Dignitas or that euthanasia should become law but just outlining what a horrific disease this is for many.
 

jennifer1967

Registered User
Mar 15, 2020
3,118
0
Southampton
It's incredibly painful for both the person who has dementia and the families. Obviously it's different in what stage of dementia a person is at and how they themselves are coping. Seeing mum crying continuously, frustrated knowing her brain doesn't work (her words), not knowing where she is or what is happening to her is horrific. No words, explanations, uttering words of love or support helps at all. She is clearly in severe mental anguish that I cannot even comprehend on how that must feel. It's interesting how in her LPA she specified that if she were suffering from an illness that she would not recover from she declined any life saving treatment, but dementia slips through her wishes.
I remember watching an interview on GMB with a man who had just been diagnosed with dementia and the following week he was taking himself off to Dignitas in Switzerland. He may have been years away from major symptoms but no-one could tell him how long he would have capacity, and of course Dignitas requires you to have capacity to make your own decisions and to obviously take the cocktail yourself, so he felt he had no choice but to do what he wanted to do whilst he was still well, which is horrendous.

I'm certainly not saying I would cart mum off to Dignitas or that euthanasia should become law but just outlining what a horrific disease this is for many.
can they not give your mum anything to feel better, it seems wrong to leave her to suffer like this and very hard on you and your sister?
 

Palerider

Registered User
Aug 9, 2015
2,436
0
North West
It's incredibly painful for both the person who has dementia and the families. Obviously it's different in what stage of dementia a person is at and how they themselves are coping. Seeing mum crying continuously, frustrated knowing her brain doesn't work (her words), not knowing where she is or what is happening to her is horrific. No words, explanations, uttering words of love or support helps at all. She is clearly in severe mental anguish that I cannot even comprehend on how that must feel. It's interesting how in her LPA she specified that if she were suffering from an illness that she would not recover from she declined any life saving treatment, but dementia slips through her wishes.
I remember watching an interview on GMB with a man who had just been diagnosed with dementia and the following week he was taking himself off to Dignitas in Switzerland. He may have been years away from major symptoms but no-one could tell him how long he would have capacity, and of course Dignitas requires you to have capacity to make your own decisions and to obviously take the cocktail yourself, so he felt he had no choice but to do what he wanted to do whilst he was still well, which is horrendous.

I'm certainly not saying I would cart mum off to Dignitas or that euthanasia should become law but just outlining what a horrific disease this is for many.
I agree with you, if I could end my mums suffdering tomorrow I would make whatever deal with the devil I had to make. It is also not right that people with a diagnosis of dementia or for that matter any other life limiting disease should have to end their life early because the only option is Dignitas. There are some very deep and serious questions in how we should proceed in the future, BUT my isue is that specifically people with dementia are branded an imaginary stamp by the professionals and left to a world that is unprepared and untrained to deal with them in a time when they need more formal care the most. You only have to read threads on TP to begin to understand the great wrong PWD are served. Those who do well in dementia care are still in the minority in the UK. Ending life in these conditions is not an acceptable solution, because to do that would mean years lost before the condition became significant and that is not acceptable for anyone that wants to make real choices.
 

kindred

Registered User
Apr 8, 2018
2,616
0
I agree with you, if I could end my mums suffdering tomorrow I would make whatever deal with the devil I had to make. It is also not right that people with a diagnosis of dementia or for that matter any other life limiting disease should have to end their life early because the only option is Dignitas. There are some very deep and serious questions in how we should proceed in the future, BUT my isue is that specifically people with dementia are branded an imaginary stamp by the professionals and left to a world that is unprepared and untrained to deal with them in a time when they need more formal care the most. You only have to read threads on TP to begin to understand the great wrong PWD are served. Those who do well in dementia care are still in the minority in the UK. Ending life in these conditions is not an acceptable solution, because to do that would mean years lost before the condition became significant and that is not acceptable for anyone that wants to make real choices.
Thank you this is profound. How and where would we wish people suffering so badly to be cared for? It takes immense skill and patience. Back in the early sixties, i did my nursing cadet ship when I was 17. I was sent to a geriatric psychiatric unit in a converted workhouse and the patients were suffering from cancer, Parkinson’s, MS and of course, dementia although it was then thought to be delayed shell shock from the war. It was an amazing place, so well staffed. When the suffering was too much for a resident to bear, and they had been long abandoned by their families, we all knew that the doctor would over medicate them and the patient would die. I am talking about really really acute and terrible suffering. But is this what we would like to happen now?
I don’t have the answer. I am haunted by what I saw in those days. Kindredx
 

Max68

Registered User
Aug 21, 2018
113
0
Sussex
@jennifer1967 , Unfortunately the GP is already trying anti depressants, which are obviously not working. Mum sits there clenching her fists shouting at her brain because it doesn't work and she shakes with anger and frustration and there is an awful lot of tears. It's strange because mum has never been an emotional person at all. Even when dad died I never saw her cry, although she may have done behind closed doors. I know dementia changes a personality but emotions like these are emotions that I wouldn't in a million years have expected to have been even hidden away in mum's brain, let alone make an appearance, even with dementia. Her sister was an angry old bird (in the nicest possible way) and when she had dementia her personality shone through with the anger and the aggression, but mum is an absolute opposite now to what she was three years ago. It's the boredom as well and she mentions that frequently. If you can't read anymore, take in the telly or remember doing anything life must just become so boring and pointless,. Even if she could read a book, she wouldn't remember that she did. My sister asked me if I thought if mum wakes up every morning and wonders where she is. I replied quite honestly I try not to think about it. After all what can you do?

@Palerider, Agree. The problem is dementia is not considered an illness, if it was I suspect people wouldn't have to self fund, but that's another discussion! We certainly don't want to lose mum but it just seemed somewhat counter productive for the GP to have done his upmost to make sure she survived Covid which just to me seems a bit bizarre considering where she is after surviving it. She was 48 hours from end of life care and whilst very ill she was comfortable. How the anti biotics worked I will never know but whilst they saved her, they left her living a life she doesn't want to be living. No anti biotics and she would have slipped away, to a better place, who knows?! That's not knocking the GP by the way. Far from it. That's his job and we had already discussed with him to leave her in the home rather than hospital because mum wouldn't have qualified for a ventilator anyway. I suspect he feels the same but as a GP his job is to save lives regardless.
 

Palerider

Registered User
Aug 9, 2015
2,436
0
North West
Thank you this is profound. How and where would we wish people suffering so badly to be cared for? It takes immense skill and patience. Back in the early sixties, i did my nursing cadet ship when I was 17. I was sent to a geriatric psychiatric unit in a converted workhouse and the patients were suffering from cancer, Parkinson’s, MS and of course, dementia although it was then thought to be delayed shell shock from the war. It was an amazing place, so well staffed. When the suffering was too much for a resident to bear, and they had been long abandoned by their families, we all knew that the doctor would over medicate them and the patient would die. I am talking about really really acute and terrible suffering. But is this what we would like to happen now?
I don’t have the answer. I am haunted by what I saw in those days. Kindredx
It is profound very much so, these are questions that as individuals and as a society we have to formulate answers to. It is always a great thing to ask the purpose of a thing, but it is harder to explain the purpose of what we do, because essentially no one knows why we really do it other than opinion. Its inetersting you recanted your memories of being a cadet nurse and your memory of what happened then. I think we are always going to be held in a dilemma in what we ought to do versus what we should do and that difficulty is still present today
 

Palerider

Registered User
Aug 9, 2015
2,436
0
North West
@Palerider, Agree. The problem is dementia is not considered an illness, if it was I suspect people wouldn't have to self fund, but that's another discussion! We certainly don't want to lose mum but it just seemed somewhat counter productive for the GP to have done his upmost to make sure she survived Covid which just to me seems a bit bizarre considering where she is after surviving it. She was 48 hours from end of life care and whilst very ill she was comfortable. How the anti biotics worked I will never know but whilst they saved her, they left her living a life she doesn't want to be living. No anti biotics and she would have slipped away, to a better place, who knows?! That's not knocking the GP by the way. Far from it. That's his job and we had already discussed with him to leave her in the home rather than hospital because mum wouldn't have qualified for a ventilator anyway. I suspect he feels the same but as a GP his job is to save lives regardless.
I don't know what the answer is either! But penultimately any healthvcare professional has the duty to uphold a treatment or intervention that by virtue is deemed to be reasonable. So we get into very odd territory, but what we have to ask is not the preservation of life but the degree of suffering if no one intervened, that also is a reason why health professionals do what they do...it is not to preserve life, but to lessen any suffering which these days we take as an equal to preserving life, which it is not.

There is a great book by Jonathan Glover called Causing Death and Saving Lives -I recommend anyone who finds themselves here to read it -you will find each argument and opposing argument as equally difficult to deal with