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[trigger warning] - question about end of life scenarios

rmabo

Registered User
May 19, 2019
25
[Ok warning - this post may discuss graphic details of end of life situations. I don't want to upset anyone.]

My mother is FTD/nfPPA and has been for 4 years. Her health was never good, and she suffered from a sarcoidosis that almost killed her 2 years ago.

I'm the only son. She has no one else to care for her in the whole world. I placed her in the best care facility i could afford and hired a full time carer on top of it to keep her 'entertained'. If I learned something over the last 4 years, is that it's important to be ready and not to put your head in the sand. That helped me carry the right medicine in my bag at all time in case of hypertension issues for example. The readiness has saved her life on more than one occasion.

I'm really sorry if what i'm about to bring up is in poor taste but please understand I am not a doctor, I've never been exposed to death and therefore when it hits it's going to be me caring for her until the very end. So , i need to know what it's like so i can ready myself and make her passing as confortable as humanely possible. I also need to prepare myself psychologically, as I've been put through the wringer in the last 4 years and I feel i'm often on the edge of a precipice.

a) I read through accounts of people on this forum saying the end 'was mercifully quick'. What does that mean? Outside the scope of a stroke which i can picture, how do people with what my mum has (ftd/nfPPA) die? Does their heart stop or something? I really don't understand and i can't picture it
b) the opposite situation. My mother was a nurse and she saw a lot of people die . She sometimes told me about it and spoke of people choking to death, i guess that means death by asphyxiation , either because the airways are blocked or because they can't take in the oxygen needed. Is that was they describe as a 'slow death'? If my mother was to be in such a situation, is there something I can do or ask the doctors to do to not prolong her pain? She was very clear when she was not sick that she didn't want to suffer (who does, i guess).

Again I'm sorry if i upset anyone but i need to know what i'm going to face when i face it. I'll be alone, and yes, I'm scared.

Thank you.
 

karaokePete

Registered User
Jul 23, 2017
5,308
N Ireland
Don't worry about asking difficult questions @rmabo. You will get understanding and support here.

The only thing I can say is that when my parents died(not dementia related) they were both kept pain free and died peacefully. In both cases, in different hospitals and several years apart, the staff were magnificent.

I hope that any fears will not come to pass and wish you and your mother nothing but the best.

Do use the forum for support.
 

canary

Registered User
Feb 25, 2014
11,696
South coast
Hello @rmabo , you are right. Death has become a taboo subject and no-one apart from places like this talk about it.

Every persons death is individual. Sometimes people with dementia die from some thing, such a a heart attack, when it can be very quick, but when you die from dementia it can go on a long time. When someone with dementia dies their body starts shutting down slowly over day, weeks or even months. They sleep alot more, become reluctant to eat and drink and start to lose weight. Eventually they stop eating and drinking at all (usually the eating goes first) and often they lose the ability to swallow at this time, so that food gets pouched or dribbled/spat out, rather than swallowed. Drinking can make them cough. There are techniques you can use to help them swallow, but eventually the food/ fluid will be rejected.

At this point many people will panic and think that their relative will starve to death - not so. They are refusing the food/fluid because they are already dying and their body no longer needs it. This stage can go on a remarkably long time. My mum went 17 days with no food or fluid, but most people do not go on that long. During this period , and especially the last few days, mum was given painkillers and other drugs to keep her painfree and comfortable. Right at the end they become semiconcious, the limbs go cold and the breathing changes so that there are gaps between the breaths. When this happens you are usually only hours from the end. Eventually the breathing just stops.

Please do not fear the end. I found the thought of it worse than the actual experience. Find out what help you can get (are you in UK?) and we will always be here to hold your virtual hand.
 

Splashing About

Registered User
Oct 20, 2019
405
@rmabo I have read similar articles to the one @Cat27 posted. I’d just add an observation that with dementia the above description doesn’t indicate imminent death. My mum has had most of the symptoms for months now. We were told she was end of life with a matter of weeks left back in October. She’s been sleepy, not eating, drinking, bed bound, cold limbs, blue feet and hands, breathing changes etc but very much alive. I wouldn’t be surprised if this went on for months. I also wouldn’t be too surprised if she died tonight. This anticipatory grief has been really hard. I feel like I’ve faced her death many times over. So don’t get too convinced by the article.
 

Izzy

Volunteer Moderator
Aug 31, 2003
61,180
68
Dundee
I’m so sorry to read about your mum @rmabo.

I just wanted to mention that I found the Marie Cure information massively helpful when first my mum and then my husband were at end of life -

 

rmabo

Registered User
May 19, 2019
25
I just wanted to thank everyone for their answers. This is a difficult topic and I really appreciate the support as I'm often feeling 'overwhelmed' by the situation.
 

AliceA

Registered User
May 27, 2016
2,706
Thank you for bringing the subject up. People used to be more used to death at one time because like birth it was a home event. We should not shun from the inevitable but we should not worry too much. Like birth it has a time frame beyond our control.
All we can do is to keep Love up to date, reassure that people are loved.
 

Pete1

Registered User
Jul 16, 2019
600
Hi @rmabo, there is no doubt that in my experience it was a traumatic situation - I can't tell you otherwise. I experienced it at different times with both Mum and Dad, who had palliative care in their Care Homes after several years with dementia. My Mum passed away just over a year ago. She fell ill with a chest infection (that did not respond to antibiotics) and she passed away within a fortnight - she was extremely frail. I can't say much other than in all honesty it was quite brutal to witness, despite going through it before with Dad 7 years earlier. I said as much to the GP when she visited for the last time and she agreed. Nevertheless, I would sit by Mum's bed and hold her hand and talk to her as it is said the hearing is one of the last functions to go (she couldn't communicate for the last four days). I would just talk about the times gone past and the things she had selflessly done for me, as her breathing became ever more laboured. The Senior Care Worker knew exactly what was going on and would tell me to go home as it 'wasn't time' - after all they deal with it all the time. I was pleased she was allowed to remain in the care home (rather than hospital). When I was told it was end of life care (and pain management) I actually felt strangely calm over the situation. I can understand that you feel scared I think that is perfectly normal, but I don't think you can ever really prepare yourself for it whether your Mum is 60 or 90 it doesn't matter. I always say Mum is someone extremely special that has nurtured and cared for you, and it feels wrong that you are helpless in the situation. All I would say is enjoy the moments now, however difficult they seem. I know you find it difficult going to visit Mum and heartbreaking seeing her wave goodbye, but use that time to go over old memories with her - I used to take in the same photo's to show Mum everyday and old home movies on a laptop - it is about her enjoying the moment, and you enabling that. Take care of yourself, and be kind to yourself.
 

rmabo

Registered User
May 19, 2019
25
Thank you very much @Pete1 - your account is the most honest and direct I've read so far about the matter. I really appreciate you taking the time to write it.
 

spandit

Registered User
Feb 11, 2020
56
My mother died from cancer 12 years ago. She wanted to be at home and was visited by nurses every day, who kept her hooked up to a syringe driver so she wasn't in pain any more. It took a while for her to die and I chose not to be in the room when it happened (so my final memory is of her sleeping peacefully) but the signs at the very end were quite obvious. My father was out of the house at the time, I wonder if she knew and chose to go at that moment. About 2 days before she died, she was awake enough (as the nurses were changing the bed) for me to tell her that she was going to be a grandmother (my wife was 3 weeks pregnant). She could barely talk but was visibly thrilled. Our daughter is 10 now and I see my mother looking out from her face from time to time.

What will kill my father in the end, I don't know. Could be the dementia, his kidneys, his heart, his high blood pressure or something else. We all know it's inevitable but you can never be truly prepared for it.

I wish I'd gone to grief counselling after my mother died. It very nearly cost me my marriage. Look after yourself. It's all your mother would want for you.
 

Palerider

Registered User
Aug 9, 2015
1,440
North West
You know my gran gave me the biggest break at the end of her life she smiled at me in the hospital and told me to go home, hours later she died very peacefully with a nurse holding her hand. I had always wished I had been there, but I got the feeling gran didn't want me to see what would come that night.

Everyone has their own way of leaving this world and you can't know that until it comes. My dad was very different in the end he was frightened and unsure and we stayed with him.Mum with her dementia stood and stroked his head and told him not to worry it would be all ok....that was my mum loving her life friend to the end, despite all of their differences, mum soothed him and spoke to him she was amazing to watch calm dad and keep him so peaceful.

It is scary but it is a skill we learn as we go along after all its not something we experince everyday, so we can't learn this in the way we learn other things
 

spandit

Registered User
Feb 11, 2020
56
There was an old lady that my in-laws used to visit. It got to the stage that she was on the way out but because of what was going on with my mother at the time, they couldn't go and see her. She waited for them. They went to see her the next day and she died that night.

I know your mother was a nurse but medical practices have moved on over the years and there are more effective pain controls etc. I hope that when the end does come she doesn't suffer and you come to realise what a great job you've done in helping her towards the end.
 

Peppie

Registered User
Jul 9, 2017
48
[Ok warning - this post may discuss graphic details of end of life situations. I don't want to upset anyone.]

My mother is FTD/nfPPA and has been for 4 years. Her health was never good, and she suffered from a sarcoidosis that almost killed her 2 years ago.

I'm the only son. She has no one else to care for her in the whole world. I placed her in the best care facility i could afford and hired a full time carer on top of it to keep her 'entertained'. If I learned something over the last 4 years, is that it's important to be ready and not to put your head in the sand. That helped me carry the right medicine in my bag at all time in case of hypertension issues for example. The readiness has saved her life on more than one occasion.

I'm really sorry if what i'm about to bring up is in poor taste but please understand I am not a doctor, I've never been exposed to death and therefore when it hits it's going to be me caring for her until the very end. So , i need to know what it's like so i can ready myself and make her passing as confortable as humanely possible. I also need to prepare myself psychologically, as I've been put through the wringer in the last 4 years and I feel i'm often on the edge of a precipice.

a) I read through accounts of people on this forum saying the end 'was mercifully quick'. What does that mean? Outside the scope of a stroke which i can picture, how do people with what my mum has (ftd/nfPPA) die? Does their heart stop or something? I really don't understand and i can't picture it
b) the opposite situation. My mother was a nurse and she saw a lot of people die . She sometimes told me about it and spoke of people choking to death, i guess that means death by asphyxiation , either because the airways are blocked or because they can't take in the oxygen needed. Is that was they describe as a 'slow death'? If my mother was to be in such a situation, is there something I can do or ask the doctors to do to not prolong her pain? She was very clear when she was not sick that she didn't want to suffer (who does, i guess).

Again I'm sorry if i upset anyone but i need to know what i'm going to face when i face it. I'll be alone, and yes, I'm scared.

Thank you.
[Ok warning - this post may discuss graphic details of end of life situations. I don't want to upset anyone.]

My mother is FTD/nfPPA and has been for 4 years. Her health was never good, and she suffered from a sarcoidosis that almost killed her 2 years ago.

I'm the only son. She has no one else to care for her in the whole world. I placed her in the best care facility i could afford and hired a full time carer on top of it to keep her 'entertained'. If I learned something over the last 4 years, is that it's important to be ready and not to put your head in the sand. That helped me carry the right medicine in my bag at all time in case of hypertension issues for example. The readiness has saved her life on more than one occasion.

I'm really sorry if what i'm about to bring up is in poor taste but please understand I am not a doctor, I've never been exposed to death and therefore when it hits it's going to be me caring for her until the very end. So , i need to know what it's like so i can ready myself and make her passing as confortable as humanely possible. I also need to prepare myself psychologically, as I've been put through the wringer in the last 4 years and I feel i'm often on the edge of a precipice.

a) I read through accounts of people on this forum saying the end 'was mercifully quick'. What does that mean? Outside the scope of a stroke which i can picture, how do people with what my mum has (ftd/nfPPA) die? Does their heart stop or something? I really don't understand and i can't picture it
b) the opposite situation. My mother was a nurse and she saw a lot of people die . She sometimes told me about it and spoke of people choking to death, i guess that means death by asphyxiation , either because the airways are blocked or because they can't take in the oxygen needed. Is that was they describe as a 'slow death'? If my mother was to be in such a situation, is there something I can do or ask the doctors to do to not prolong her pain? She was very clear when she was not sick that she didn't want to suffer (who does, i guess).

Again I'm sorry if i upset anyone but i need to know what i'm going to face when i face it. I'll be alone, and yes, I'm scared.

Thank you.
Hi there my Dad passed away very peacefully he didn't have a stroke or heart attack his death certificate simply said cause of death Dementia. A few weeks earlier he slowed down didn't eat much and lost a lot of weight although up to that point he was still active and enjoyed his food then on the Friday he didn't want to get out of bed I managed to feed him a very small amount of food he normally feed himself then he never ate anything else he would take small sips of juice then that stopped. He started having horrendous pain. Then the district nurse came in several times daily and he was kept pain free at all times He thanked me and told me he loved He never spoke again after that I stayed by his side Day and night for a week holding his hand talking to him only leaving to shower dosing in the chair by his side he was warm and cosy the following Thursday his breathing changed and was slow and laboured then on the Friday exactly 7 days later he took a breath in and died while I was giving him a cuddle and moistening his lips so they wouldn't get dry he was so peaceful I was heartbroken and distraught but I know now it was the right time for him I think he just thought enough is enough I looked after him for years he was always there for me I miss him so very much but it was the right time he passed away 8 months ago. I was worried and scared about the end coming but although heartbreaking Dad didn't suffer in the end and I will always treasure our great relationship and that last week I found comfort in the fact that I was by his side to the very end. I hope you find some comfort and peace of mind in the replies you get on this talking point and when the time is right and that time comes I hope it's as peaceful for your mum and not traumatic for you take care.
 

Hazara8

Registered User
Apr 6, 2015
416
[Ok warning - this post may discuss graphic details of end of life situations. I don't want to upset anyone.]

My mother is FTD/nfPPA and has been for 4 years. Her health was never good, and she suffered from a sarcoidosis that almost killed her 2 years ago.

I'm the only son. She has no one else to care for her in the whole world. I placed her in the best care facility i could afford and hired a full time carer on top of it to keep her 'entertained'. If I learned something over the last 4 years, is that it's important to be ready and not to put your head in the sand. That helped me carry the right medicine in my bag at all time in case of hypertension issues for example. The readiness has saved her life on more than one occasion.

I'm really sorry if what i'm about to bring up is in poor taste but please understand I am not a doctor, I've never been exposed to death and therefore when it hits it's going to be me caring for her until the very end. So , i need to know what it's like so i can ready myself and make her passing as confortable as humanely possible. I also need to prepare myself psychologically, as I've been put through the wringer in the last 4 years and I feel i'm often on the edge of a precipice.

a) I read through accounts of people on this forum saying the end 'was mercifully quick'. What does that mean? Outside the scope of a stroke which i can picture, how do people with what my mum has (ftd/nfPPA) die? Does their heart stop or something? I really don't understand and i can't picture it
b) the opposite situation. My mother was a nurse and she saw a lot of people die . She sometimes told me about it and spoke of people choking to death, i guess that means death by asphyxiation , either because the airways are blocked or because they can't take in the oxygen needed. Is that was they describe as a 'slow death'? If my mother was to be in such a situation, is there something I can do or ask the doctors to do to not prolong her pain? She was very clear when she was not sick that she didn't want to suffer (who does, i guess).

Again I'm sorry if i upset anyone but i need to know what i'm going to face when i face it. I'll be alone, and yes, I'm scared.

Thank you.
Every single case is different. As we are all different, with our billions of brain cells which tell our own story. So we can understand clinical " facts" which are common to a human body when ' end of life' comes because there are certain physical events which have to take place as the body shuts down. So when assessment is in hand (symptoms, management of etc) and palliative care in place and so on, we as carers ( sons, daughters, husbands and wives et al) look to COMFORT as paramount. There is no guarantee that things follow a definite pattern and often you find senior medical staff are as surprised as you are when that " week to ten days" turns into twenty eight days, as with my late mother. There had been a slim chance of treating her condition (white cell count) but when this failed, then the focus was on the application of " comfort" and this is precisely what compelled me to remain with my mother in a hospital side room, for the twenty eight days during which she never left her bed, nor partook of a meal, nor a proper drink. Up until this moment my mother had been resident in a Care Home and In her late 90's was remarkably fit. Only Alzheimer's and Vascular dementia had by this time reduced her " normal" vibrant and youthful self into the compromised and totally vulnerable person she now was. Although she would be asleep for long periods of time, l remained by her side day and night, despite reservations from siblings as to that perpetual need, as clinical staff were attending and a ' dementia team's operated on the ward during the week. I remained because l had been caring for my mother since the diagnosis - had been through the all so challenging behaviours and presentations of this unremitting disease, which culminated in a desperate emergency and eventual admission into an EMI unit.

Palliative care appears to be something well understood in cancer overall. Dementia is terminal and complex and often seems to pose something of a quandary in this respect. The healthcare in the hospital was very good. Because my mother became very stressed during " turning " to prevent bed sores and for washing, l assisted by holding my mother either in embrace or by hand. I was asked if l would continue to do so, as it quelled agitation and upset. Day followed night and each week witnessed the slow decline but devoid of drama nor real pain. The dead of night in a hospital can be strangely revealing. Amidst the silence and " bleeping " of monitoring devices, the occasional calling out of another "dementia " patient, comes moments of peace, clarity and even a kind of awareness of life with its true meaning, because you are in the presence of a dying person, your mother. That sheds much that is trivial and much that is irrelevant. Also, because you are there all the time you are there when the need arises. Mother would sometimes open her eyes and with her wet AMD find it hard to locate me. My voice she still knew. But it was my hand which addressed any anxiety, with a smile and a "Oh, l know whose hand that is!" coupled to a squeeze.
So that was how we progressed, me sleeping alongside her in a large hospital 'armchair , holding her hand in the early hours when she would awaken rather frightened and then know she was " safe" and despite the dementia it was such moments which remain a mystery - the moments of lucidity and seemingly restoration of what the person was before the dementia claimed possession. And so you do those things out of a supreme desire to "comfort" the one you love, the mother who cared for you from birth, who gave you unconditional love and to whom you now administer such in return because it would be literally impossible not to do so. You develop a "secondary bond" - as child to adult carer. You nurse and you nurture and despite the trauma of earlier care, you realise that within the cloud of dementia resides the mother you know. You know, because when the morning arrives and she slips into that sleep of no return and the family are gathered around, some in tears, some bewildered, some accepting because they have been there before - YOU know, because only YOU were there in those early hours when she opened her eyes wide for the first time in weeks and spoke to you in a calm and clear voice just as if there was nothing wrong with her whatsoever. And the squeezing of the hand felt good, very good and in that brief moment you felt no grief, no anguish, no regret, in fact nothing - nothing other than being present in the moment of a truth and a truth which knows nothing about fear nor hope nor anything. We have one word for it. Love.