Failing my mum

[calranthe]

20 years ago we experienced dementia in the form of an relative slowly fading away all the bad stuff, a week after he died my Mum called me down stairs for a serious chat, we were always very open and to the point, no double talk no deception we were our own people but loved and respected each other.

The conversation went like this "if i am ever diagnosed with dementia I want you to end it for me" She was completely serious the conversation continued "I know you would find a way, if I go away like that, if I am not me, if you look into my eyes and I am no longer me end me do not let me become a burden"
I gave her my word, this is not something I do often in 30+ years of adult life I have given my word three times.

Four years ago my mum was diagnosed with early onset and I have watched that amazing woman turn into a stranger, I have seen all she cared for fade away, my mum is gone, I am 100% sure of that, what is left is a hollow shell of a human being, eating only ice cream, angry, spiteful, talking to her reflection in her more lucid moments, walking around half naked, you all know the bad stuff.

I do not mind the work, I do not even mind the pain and fatigue, I've been a carer for my disabled wife for 18 years life goes on and you adapt, either you deal with life or it deals with you.

But the fact I have failed in my promise to my mum that hurts, you may say it was not fair her asking that but honestly how many of us here who have seen this nasty horrible illness would want to go through it ourselves, how many of us would beg for some one to end it before we end up like that. How many of us who know what it is like to care for another would want that jail sentence on some one we love and yes the isolation the experience it is like going to jail.

Sadly my mums dementia came on so quickly that she had no time to deal with it herself because I know she would have ended it herself.

The worst thing about all this is that I am an animal lover, I love all types of animals we have two lovely rescue dogs and no one I know who cares for animals would allow a dog to carry on living if it was in the exact same state as my mum, we would do the right thing, we would do whats best for them but we can not do the same for that amazing human being who brought us into the world and supported us.

As for me my only excuse for failing is my wife, she needs me and doing something illegal would mean I could not care for and look after her. all I can do is be there and be thankful for the smallest of mercies that my mum is not aware of what has happened because if she knew what she had become she could not live with it.

Sorry I just needed to vent in a place that just maybe some one out there has delt with this kind of darkness.

Am I a horrible person to wish my mums body would realise what her brain already knows that she is dead, am I wrong to think it is a complete waste of resources and time spent on trying to hold back a certain death sentence by days or months after a certain point when all it does is bring pain to all involved.

 

[HillyBilly]

Hi there Calranthe.
Welcome to Talking Point.
If I were legally able to, I would assist my own Mum off this planet. I would do it for others I love. I would want somebody to do it for me too if I were no longer able to do it for myself. It's such a big ask of somebody though. Me personally I'm looking into Dignitas if ever that time comes.
I too am an animal lover and I've had to make those decisions in the best interests of my best friends (my animals). It's heartbreaking but you know you're doing the right thing. I just wish the human medical professions and ethics would catch up x

 

[Lawson58]

You definitely haven't failed your mum though I can fully understand why you think you do.

The thing is that your mum asked you to take on a responsibility that was never yours to have and to make a decision that was never yours to make.

I am an animal lover and have had to make that decision for them but that has no bearing on this. When we get a pet, we take on the responsibility for their care and when the time comes, we make certain decisions on their behalf because they have never had capacity, understanding or knowledge to make it for themselves.

You could say the same about your mum. However it is because she doesn't have capacity that she would be protected even under programs like Dignitas. And this is in place because there are people out there whose motives would be different to yours.

We are human beings and as such ethically we can't and shouldn't expect others to make a decision like euthanasia for them.

DNRs are a completely different issue but at the heart of the matter is that there are times when we sadly have to let nature take its course.

I feel very sad for you but just remember that you have many years of living ahead of you and that you will be happier if you have a clear conscience.

 

[Cat27]

Welcome to TP

I'm so sorry you feel you've failed your mum. You have not!

I think you'd benefit from talking things over with our helpline

Looking for information, support or advice about dementia? Our helpline is here for you.

You can contact our helpline by calling 0300 222 1122 or by email at helpline@alzheimers.org.uk.

Helpline opening hours:
Monday to Wednesday 9am – 8pm
Thursday and Friday 9am – 5pm
Saturday and Sunday 10am – 4pm
However, the service may be closed occasionally during these times for operational reasons.

Find out more Alzheimer’s Society National Dementia Helpline

 

[Delphie]

The promise you were asked to make, and made, was more of an abstract idea than a plan. I'm sure of that. Neither your mum nor you gave any thought at the time to how you would accomplish this and at what price to yourself.

Imagine for a moment what your mum would be saying to you now, if she could see and understand the situation as it is. Do you honestly believe she'd be encouraging you to commit a crime that would probably result in a prison sentence? Would she want you to suffer the emotional impact of taking a life?

I think that conversation and promise were more about other things than you being made responsible for ending her life. She was expressing her fears and kind of saying that beyond a certain point you are to let her go.

I told my sons to push me off a cliff if I ever get to be like grandma. I don't want to be an angry old woman, completely out of touch with reality, relying on others to wipe my bum. Who does. What I also don't want is for them to sacrifice their lives and happiness for me, if things get that bad. Will they push me off a cliff? Probably not. But that conversation gave them permission to be free of caring for me. I want them to go and live their lives without guilt.

I think your mum, if she could tell you this now, would be saying the same.

 

[Pear trees]

I would also assist my 90 year old mum out of her living death if I legally could. She has absolutely no quality of life, needs full personal care and no longer interacts with anybody or anything. Her GP says she is physically very fit and could live a good few years yet barring sudden illness or falls.

 

[Marnie63]

If there was a kinder way (than dementia) to let my mum 'let go of life', then I would consider it, however I would struggle to actually make a final decision on it. If a doctor were to say to me tomorrow, "M, your mum is 91, her cognitive abilities are severely affected, she's had a good life, you need to get on with yours now ... here's an option, we can give her this drug/herb/tonic/whatever and within a few weeks she will become sleepier and sleepier and finally die", I think I would seriously consider it, but I would need him/her or someone else to help me make that decision. It's a hard one to hold responsibility for.

Sadly, that option is not available. To pump mum with Paracetamol to get the same effect would be wrong and illegal and I would end up in prison. I don't want mum's release at the price of a prison sentence! So, we have to let life take it's natural course.

As for me, I think if one day I were to start developing dementia and if I could still remember all the horrors I've been through with mum, I would definitely consider whisking myself off before the full horror of dementia set in.

With mum, I haven't even set up a DNR as I can't (read back to not wanting the responsibility!), but I've told the GP that if a situation were to arise where we have a choice of treating or letting her go, I will make the decision then.

 

[Selinacroft]

Hi Calranthe- have you discussed a DNR order with your mum's GP? This is something you could do for her to keep your promise.

 

[Daisysmum]

a promise

My mum also asked me to "put a pillow over her face" if she ever want able to take care of her own personal care needs. I promised that i would.

Vascular dementia started to affects mum's day to day life around 11 years ago. 4 1/2 years ago she needed 24 hour care and went into a nursing home. She could not walk, talk, recognise us, was incontinent, could not feed herself.

The sad reality though is that i could not make good on my promise. i felt guilty. So, although mum could no longer understand me i had a long teary conversation with her and told her i was so very very sorry but i couldn't do as she asked.

It helped a little as i did feel i had been honest with her and told her why i couldn't do it.

It was mum's funeral yesterday. We are so sad, but her suffering and indignity is now over.

 

[Whisperer]

Soory

I just wanted to say how sorry I was having read your comments. My mother is suffering with Vascular Dementia and I am finding it harder to cope with what is happening. However I am not burdened as you were with guilt about not carrying out your mother's stated wish. Please accept not only is she now at rest with dignity restored but your emotional burden Can now slowly ease. I am having a struggle but your own must have been much worse with this additional emotional burden. I just wanted to contact you and say you did a great job. If your mum could speak to you she would I think say the same. You could not do what was asked of you for very good and also practical reasons.
I know it may not yet strike a cord but your life now restarts. Enjoy that journey. I hope I have managed to express what is meant to be a reassuring comment in an acceptable way. Emotions are difficult things but I just felt the need to respond to your post. Best of luck with the future.

 

[Daisysmum]

Thanks

How very kind to respond to my post with such generous comments.

I feel i allayed a lot of my guilt by talking to mum about it. My brother, sister and i talked about things yesterday at the funeral and we think we did all that we possibly could to help and support her while she was alive and also gave her the sort of funeral she wanted.

I am sorry to hear your mum is suffering with vascular dementia. I see from your posts that you are caring for her at home?

It may help you to know that my mum never went to a memory clinic and never saw a GP as she refused to go. We cared for her at home as teamwork between my sister, brother and myself for 5 years, until a large TIA took away so many of her skills and abilities that she needed so much care she needed a nursing home. At home mum had higher rate attendance allowance. in the nursing home she eventually received full NHS continuing healthcare funding again without ever receiving an "official diagnosis".

My advice to you would be to get as much help and support as you can and not wait until you are desperate! Use family members and friends and don't be too proud to accept help. Dementia is a long term condition and you need to pace yourself. it is important you look after yourself to make sure you can look after your mum.

Take care

Linda x

I just wanted to say how sorry I was having read your comments. My mother is suffering with Vascular Dementia and I am finding it harder to cope with what is happening. However I am not burdened as you were with guilt about not carrying out your mother's stated wish. Please accept not only is she now at rest with dignity restored but your emotional burden Can now slowly ease. I am having a struggle but your own must have been much worse with this additional emotional burden. I just wanted to contact you and say you did a great job. If your mum could speak to you she would I think say the same. You could not do what was asked of you for very good and also practical reasons.
I know it may not yet strike a cord but your life now restarts. Enjoy that journey. I hope I have managed to express what is meant to be a reassuring comment in an acceptable way. Emotions are difficult things but I just felt the need to respond to your post. Best of luck with the future.

 

[marionq]

When we were younger my husband often said that if he became "doolally" I should give him a pill to end it all. Now I guess a lot of us think about this fictional pill without knowing what it actually is.

I wouldn't know how to finish him off painlessly and doubt very much that I would do it or want to do it but I do think the conversation needs to be out there and is gaining ground.

In the meantime he is healthy apart from Alz, glaucoma, and a bad knee. Good appetite, enjoys the sunshine, at present is sitting up in bed after tea and a bacon roll, looking at his daily paper.

What then is quality of life and who is it for? Is it about the PWD or the carers? Is it about dignity and/or cost?

When my BIL was at the end of a long journey with Vas Dem my niece told me she would be the one to administer the pill if someone would just tell her what it was.

A big topic. No easy answers.

 

[Witzend]

You haven't failed your mum. She was asking you to do something illegal, which could easily have landed you in prison.

I think many of us have wondered why people with dementia past the earlier stages, who are so often not happy, are constantly anxious or fretting or confused, or angry with those trying to care for them; who are maybe suffering the indignity of incontinence - or all of these - are forced to go on and on and on, when we feel that it would be so much kinder for them if they could slip away peacefully in their sleep.

I know that in the weeks before my mother finally went into her care home - she was 89 and her dementia was already quite advanced - I often wished so much that I could give her a glass or two of her favourite sherry, followed by a lovely dinner, tuck her up in bed, kiss her goodnight, and have her drift quietly away in her sleep, before we had to put her through all the upset of a move to a care home.
Of course it was not to be. She went on to 97, in a most pitiful state for her last few years. How much kinder it would have been Nature had let her go sooner. I know absolutely that it was what her former self would have wanted - she would have been so horrified if she could have seen what she'd become.

I would not of course think the same about anyone who was apparently quite happy and contented in their dementia, but in my experience such cases are comparatively uncommon.

 

[Trisha4]

I think we all understand your post. In my opinion you cannot have failed as the word you thought you had given cannot be honoured. We don't have that right and I'm sure your Mum would not wish your future to suffer in order to carry out such an act. Your initial conversation didn't consider the logistics.
I don't believe in a god so I wouldn't say it is in a god's hands either. Things have to take their course and we have to put as much in place as possible to limit the suffering to both the person with dementia and his or her carer. In my case I'm caring for my husband of 47 years and I find the long slow bereavement horrible. But we are where we are. I wish you strength and some peace. Don't make things harder by adding guilt.


Sent from my iPhone using Talking Point

 

[calranthe]

Thank you for the replies, I used to think cancer was the worst illness possible my wife has an incurable form of cancer and the drugs she takes to keep it away are very slowly killing her, it started just after her 21st birthday but with all the side effects and ending up in a wheelchair even now 18 years later she is still the same person I fell in love with, we still have each other and can still joke and smile even in a bad situation but dementia, it takes away that person.

My mums dementia hit just after her 60th and it accelerated fast, even though through it all she has the typical "nothing wrong with me" it hit her speech very fast within three months any way to communicate was gone (thank fully we did manage (me and her partner) to setup control of the finances) she still speaks but it is all like four,four,four,mum,for,tony,four,three,two,one type of language that only she understands, she has angry times and nasty times, crying times and laughing times, she still loves speaking to her reflection in windows and mirrors whoever she recognises that as now.

We live next door to each other so the garden is open for her to explore, she loves animals and birds, side gates and front doors are permanently locked now due to the chance she will wander or attack neighbours, it just means she has a bit of a haven.

She comes around complaining in her own speak about everything her partner does (they are not married they only met a few years ago but he is a damn angel, he gave us his house and moved in with Mum they were only neighbours and dating at the start).

Let me put this in context
My father died when I was twelve in a car crash, this was my mums second husband the first had a fall at work and died to a brain haemorrhage, she took on two jobs looking after me and my sister, for the next 30 years she supported us both and even when we left home she worked full time saving up money so that when she was gone we would be taken care of, then she moved house and met her neighbour who became partner and actually to our very great happiness started to actually live, he took her to Scotland, France and the USA before she got diagnosed. they spent 50% of time in each others house before she got ill.

We have already decided between us that Mum is not going into a home or care we are lucky in one way with three of us offering support to each other and none of us having to work (her partner is retired and I am primary carer for my wife) we can keep each other sane.

We know hard times are coming but then again both myself and wife have dealt with some of the worst that life can throw at you in the last 18 years and so we have a strength that most people do not get practice at (18 years of a death sentence years in hospital for chemo, radiation, transplant, drugs, seeing over 200 people die in the various cancer wards during our time, nothing special really just we decided to fight instead of letting it kill us) so while I am grateful for the offers of people to talk too, I am sure there are people here who need it more than me.

We never had to deal with the shock of "but doctors are supposed to fix things" to do with dementia we hit that wall 18 years ago with cancer.

Or the "but why does no one understand where is the help, why isn't anyone here when I need them"

That is the weird part that is hard for some to understand, the dementia the illness, that is just another disease and symptom to deal with to do with some one I love, its the not being able to keep my word, my promise to her that is what hurts me that is what makes me want to punch a wall

 

[northumbrian_k]

When my Dad was dying of cancer we had such conversations and I told him that if I could do it for him I would, but we both knew that this was not a real option. Thankfully he did not linger and died peacefully. Now my wife has dementia I am reminded of those times and the similar conversations that we have had about what would happen if either of us were in a position where we wanted to die (and were aware of this). She often says that she will kill herself if she has to go into care but this is no more likely than I would do it for her. I sometimes think that I could but ultimately we all have responsibilities to ourselves and others and in my sensible moments I know that killing her for love will never happen. We can only await the progress of this awful disease and - whilst I am still capable of doing so - I will support and care for her to the end. You certainly have not failed calranthe.

 

[Slugsta]

Hi calrante, and welcome to TP.

I'm sorry you feel you have failed your mother I believe that, in continuing to care for her, making that haven where she can be herself (who/whatever that is now), you are actually doing more for her than either of you imagined would become necessary.

Many years ago, I promised my MIL that I would end things for her if she ever became unable to look after herself. We were younger then and that future seemed so far away.

Of course, no-one really expects to be in the situation where it would be necessary to make good on such a promise and I was not able to do so when the time came that cancer was claiming my MIL's life. We were lucky in that the disease didn't hit until she was in her late 80s and she didn't linger long.

Please don't beat yourself up because you are not able to make good that long-ago promise to your mother. I'm sure she would understand is she were able.

Stangely, despite my great-grandfather having dementia and my mother having to care for her own mother with vascular dementia, my mother and I never had that conversation. She started to show signs of dementia herself in her late 80s (around the time that my MIL was weakening) and never had much insight. She is in a care home, totally dependent on others for even the basic things. She needs physical handling to change position, has to be fed and is doubly incontinent. The strange thing is that she lives in the moment and seems content. If I ask if she is happy she says 'Yes' (although I am not sure how she is when we are not with her).

Despite Mum's apparent contentment, I am very glad that the cancer, with which she was diagnosed earlier this year, will end her suffering rather than seeing her continue to be diminished by the cancer. It is one of the cruellest diseases, taking away the mind while the body marches on

 

[Rosnpton]

This is a horrid condition for anyone's loved one to go through,and I think in some ways,the carer and family suffer as much,if not more,than pwd.
Depending on where in the dementia journey they are,they may no longer realise how I'll they are,what skills they have lost etc. At the start it must be terrifying as they are aware of their old self slowly disappearing.
I'm sure a lot of us,if it were legal,and we could somehow prove our loved one had requested it,would help ease their suffering. At the moment,thatbis not a legal option.
Do remember that every now and then you may get a glimpse of the person they were before they became ill. We don't know when these fleeting good times will be,how frequent,how many minutes they last.etc. It would be terrible if you lost some random happy moment or experience because you had helped her on her way.
I truly sympathise with the mental torment you are putting yourself through over this long ago conversation .
I hope reading other threads etc on tp.will help.there are good bits as well.
Ros

 

[calranthe]

It really does suck doesn't it, as carers and sufferers of these types of illness it is like we are treading water in a vast ocean, we naturally want to swim in a direction to have a course plotted, a boat, an island a beach but we are just stuck treading water.

We can't fight it, we can't cure it, we can not even beat up or otherwise cause harm to what caused it, the best we do is damage control and hope for a swift end without too much pain and suffering.

How bad must a set of illness be that we actually hope for another illness to kick in because it will be swifter.

I believe in the sanctity of life to a point, what ever the illness if there is a chance of a cure, a chance of a stay of execution, a way to grab hold and push through pain and suffering if there is still a quality of life then fight tooth and nail use every trick in the book and then some, I saw to many people with cancer just give up, my wife is in pain every day but there is also new experience, smiles and some times laughter we have each other so we fight on but Paola knows the moment it gets too much for her then I will support her coming off the drugs that keep the cancer away.

But this damn illness can very quickly just leave a husk behind, attacks different parts in different people and can destroy everything that made a person an actual person but the body keeps plodding on especially if they had a healthy life.