So cruel

[Witzend]

I went to see my mother yesterday. One of the carers who was just going off shift told me she was being changed, since she had split tea down herself. This was tactful, since although she probably had, she had evidently poohed herself as well. I found her in her ensuite bathroom, sitting stark naked on the loo, and helped the carer clean her up, wash her hands, re-nappy her and dress her again. She was not cold or distressed or uncooperative, just blank, saying nothing and moving like a stiff, blank automaton. The carer is very kind and she has been at the CH ever since my mother moved in over 7 years ago, so I am not at all worried about her care.

What upsets me so much is the cruelty of a disease that turns someone who was an intensely sensitive, private person into this pitiful wreck with no dignity. After she was dressed I sat with her for well over an hour, and helped her to eat her supper, but there was hardly a word from her, and no recognition, and the very few words were not intelligible.

She is 96 and has had dementia for so long, at least 12 years. I don't mind admitting that if the CH phoned tomorrow and told me she was refusing food and drink, I would be glad, rather than worried. I can't help wishing that she would not be forced to go on much longer in this pitiful state. It is terrible to see her like this, all the more when I know just how her former self would be horrified. It is so very cruel.

Sorry, just letting off upset-steam, really. I know others have to witness much the same, or worse. And I wonder over and over why my cousin"s son, who was a fit, healthy and successful 38, with two little children, had to die within a year from a galloping form of leukaemia, while my poor mother just goes on and on and on.

 

[angecmc]

I went to see my mother yesterday. One of the carers who was just going off shift told me she was being changed, since she had split tea down herself. This was tactful, since although she probably had, she had evidently poohed herself as well. I found her in her ensuite bathroom, sitting stark naked on the loo, and helped the carer clean her up, wash her hands, re-nappy her and dress her again. She was not cold or distressed or uncooperative, just blank, saying nothing and moving like a stiff, blank automaton. The carer is very kind and she has been at the CH ever since my mother moved in over 7 years ago, so I am not at all worried about her care.

What upsets me so much is the cruelty of a disease that turns someone who was an intensely sensitive, private person into this pitiful wreck with no dignity. After she was dressed I sat with her for well over an hour, and helped her to eat her supper, but there was hardly a word from her, and no recognition, and the very few words were not intelligible.

She is 96 and has had dementia for so long, at least 12 years. I don't mind admitting that if the CH phoned tomorrow and told me she was refusing food and drink, I would be glad, rather than worried. I can't help wishing that she would not be forced to go on much longer in this pitiful state. It is terrible to see her like this, all the more when I know just how her former self would be horrified. It is so very cruel.

Sorry, just letting off upset-steam, really. I know others have to witness much the same, or worse. And I wonder over and over why my cousin"s son, who was a fit, healthy and successful 38, with two little children, had to die within a year from a galloping form of leukaemia, while my poor mother just goes on and on and on.

So sorry, yes it is awful to see our Mums like this and 12 years is a long time, my Mum is approx.. 9 years into hers and it feels endlessly cruel. I too wonder how my Mum keeps on going when younger people have their lives cut short so tragically. It is an unfair life. Sending you hugs (()) xx

Ange

 

[RedLou]

This pieces examines the question of medical advances sustaining old age once all quality is gone. I found it helpful to have someone writing about this openly. It's so deeply upsetting to see someone's life reduce to such an extent. You are not alone. *hugs*

http://www.theguardian.com/society/2012/jul/21/mother-dementia-care-elderly-michael-wolff

 

[Ann Mac]

What upsets me so much is the cruelty of a disease that turns someone who was an intensely sensitive, private person into this pitiful wreck with no dignity.

Sending {{{{{{hugs}}}}}.

Its the hardest thing to deal with, I think - seeing what it does to dignity, as well as peace of mind. Mil - so very modest and private pre-dementia - now just doesn't care. After yet another long course of AB's this last wek, the inevitable happened and she had a major episode of the runs. And OK, in a way, it made dealing with the clean up easier, that she just stripped off and followed instructions whilst I donned gloves and got busy with wipes and tissue paper - she was slightly upset over the mess on her bedroom floor, but otherwise, not bothered. And I found it so sad to see her not reacting to what I was having to do for her.

And after last year seeing my best friend lose her husband, aged just 42, also to cancer, less than a week after diagnosis, I also found myself wondering why we had lost him, yet my poor Mil is carrying on and losing more of her dignity with every passing day

 

[Cornishman]

As your thread title says: It's so cruel.

My mum has been in a CH for almost 12 years and in recent years has had a very poor quality of life - just surviving really.

In the last few days I've had difficult conversations with the nurse at the home plus the GP has phoned me because, not for the first time, my mother is refusing medication for pneumonia. It's a hard emotional and ethical tightrope to walk, but as the GP says, do we aggressively fight this situation, only to get her to the next episode, when she is so frail and has no quality of life, totally bed bound with no perception of anything around her?

So like you, although it will be a terribly sad loss of my mum, part of me will be thankful her suffering will be over when the time comes.

So cruel - all of it.


Sent from my iPhone using Talking Point

 

[jaymor]

Witzend It is indeed a cruel disease. My husband is at the same stage as your Mother he is 71 this month and has had the Alzheimers for 9 years. Dementia has robbed him of his retirement he worked so hard for and now takes his dignity.

The carers are good and minimise his problems as much as they can and chat away to him whilst carrying out the very personal care and he accepts it as a baby would. How mortified he would be if he was aware of his needs.

Jay

 

[Witzend]

Thanks so much, all, and huge sympathy to everyone going through the same. I suppose it's the one blessing, that they don't care any more. I have sometimes thought how much worse it would have been for my mother if she had become physically frail but retained her marbles - and needed help with 'toileting' and showering. I honestly think she would have died of embarrassment. She once had a neighbour who had to wait for her daughter in law to come and help her have a bath - she said, 'If I ever got to that stage I'd take an overdose.' And she meant it - she would have hated even her own daughters helping her.

 

[Witzend]

This pieces examines the question of medical advances sustaining old age once all quality is gone. I found it helpful to have someone writing about this openly. It's so deeply upsetting to see someone's life reduce to such an extent. You are not alone. *hugs*

http://www.theguardian.com/society/2012/jul/21/mother-dementia-care-elderly-michael-wolff

Thanks for this. I agree - very good to see this discussed. So often I feel people are afraid to raise the issue at all for fear of appearing callous. And medics who feel it may be kinder not to intervene are I feel often afraid to raise the question with relatives, for fear of upsetting them, while relatives who feel that enough is enough, may be afraid of seeming to question the medics.

 

[marionq]

I think we worry too much about the embarrassment of being washed and toileted because at this stage of our lives that's how we would feel. In her last years and with Parkinson's, severe arthritis and a stoma from bowel cancer my mother needed help from time time. Once my husband and I found her soaked and in a dire condition and before dialling for an ambulance we carried her into the bathroom, stripped, washed, changed her bag, and dressed her in fresh nightclothes. The fact that her son in law was doing these things for her was met with gratitude with no room for embarrassment in her predicament.

We better get used to this because not one of us knows what the future holds.

 

[Pickles53]

Thanks for this. I agree - very good to see this discussed. So often I feel people are afraid to raise the issue at all for fear of appearing callous. And medics who feel it may be kinder not to intervene are I feel often afraid to raise the question with relatives, for fear of upsetting them, while relatives who feel that enough is enough, may be afraid of seeming to question the medics.

It must be so difficult for medics who have been trained to preserve life especially as there are many families who would see any suggestion that stopping active intervention was effectively depriving their loved one of treatment they are entitled to. I am truly grateful for the brave doctor who last year said to my husband 'I'm not sure your father really wants us to continue this treatment' and put us in touch with the hospice team. This gave me the courage to raise the issue of DNR and palliative care only for my mum a few months ago. All the doctors agreed, but even just a few days after she died I am grateful that I didn't have to make the decision to actually stop treatment.

I will do my best to ensure that my daughter doesn't have to make these dreadful decisions, and my heart goes out to everyone facing this tragic situation now.

 

[Tomjo]

This is the thing that upsets me most about dementia - what on earth is the point of living if everything that makes living worthwhile has disappeared? My mum is only in the early stages of dementia but its fairly likely that will be the diagnosis when we finally manage to get one.

Eight years ago mum was an sprightly 85 year old living in her own home with a country cottage flower garden, lovingly maintained by my 91 year old dad. Since then she has lost: Her husband, my lovely dad, after 65 years; much of her hearing; most of her sight. Her hobbies were painting, handicrafts and cookery and she was an avid reader of murder mysteries. She can no longer process what she hears so even talking books are not an option. Her last remaining pleasures are teashop cakes and her daily shower. We visited a care home last week where the matron announced that daily showers were out of the question, residents got one shower a week and 'an extra one if they needed it.'

Mum was a nurse, trained just before WW2 in the days when scrubbing everything was the order of the day. Whatever would she make of the little old lady messing in the corner of her lounge and then forgetting she'd done it? I too am grateful that she doesn't seem to be aware of a lot of things.

I often think about mum's beloved sister who died of bowel cancer at 54, with so much living still to do, and then look at mum, as someone said, going on and on and on. One day last week I found her asleep in the chair in such a position that for a minute I thought she had died. I'm not ashamed to admit to hoping, for her sake, that she had.

 

[gringo]

The older I get and the more experience I have, the less sure I am about anything to do with dementia. My wife has AD. and also has a stoma from bowel cancer. Just about my first post on TP. a few years ago was a cry of despair, as I struggled to cope. I still think that AD. and a stoma is the most ungodly (I mean that literally) combination. Most times she has no insight into her condition, and will deny she has a bag, but there are times when she is very troubled.
She will quite often remove the bag and replace it with a piece of toilet tissue. If this is not detected in time, inevitably there is a bad outcome. I have learnt the hard way that it is unwise to greet her with a hug. Frequent checks are essential, but they have to be done on her terms, which change from day to day.
Cruel? To see my beautiful wife reduced to being a problem which must be approached with care is nothing short of heart-breaking. My original post, back then, asked how a compassionate God could allow such things to happen. Now I know that if God exists at all, he has no compassion.

 

[memaggie2]

there is nothing fair about it. nothing at all

when Dad had a chest infection the GP hinted that it wasn't doing him any favours to give antibiotics , i could have kissed him . Dad would have been so distressed if he could have seen what he had deteriorated to .

Your mum fortunately doesn't know whats happening ,which is such a blessing ,i find the earlier stages of this awful disease are the worst

hugs x

 

[Witzend]

I think we worry too much about the embarrassment of being washed and toileted because at this stage of our lives that's how we would feel. In her last years and with Parkinson's, severe arthritis and a stoma from bowel cancer my mother needed help from time time. Once my husband and I found her soaked and in a dire condition and before dialling for an ambulance we carried her into the bathroom, stripped, washed, changed her bag, and dressed her in fresh nightclothes. The fact that her son in law was doing these things for her was met with gratitude with no room for embarrassment in her predicament.

We better get used to this because not one of us knows what the future holds.

As I said, it's a blessing that in later stages it doesn't bother them any more - my mother is no more bothered than a baby. But I don't think that stops us feeling how sad and cruel it is, to see every last shred of a loved one's dignity stripped away.

 

[memaggie2]

This pieces examines the question of medical advances sustaining old age once all quality is gone. I found it helpful to have someone writing about this openly. It's so deeply upsetting to see someone's life reduce to such an extent. You are not alone. *hugs*

http://www.theguardian.com/society/2012/jul/21/mother-dementia-care-elderly-michael-wolff

I read your link, thankyou ....he says what i have believed for many years

 

[rosa4077]

i totally agree with you all why should we agree that life should be continued when life is contained by sitting in a chair unable to speak, communicate or otherwise say no have had enough, no doubt others will say we do not have consent to say this however those of us who have experienced this situation watching a beloved parent reducedd to this
may disagree. No one wants their parent to die however i have prayed for the past eighteen months for my mum to pass away so not to have continue "this existemce " that may be hard for anyone to understand " i love my mum" and want what is best for her but feel that what she is experiencing is intolerable , Sorry have appeared to hi jack your thread just want you to know that I understand
BIG HUGS
ROSA

 

[cragmaid]

Witzend, it is of no consolation to you that so many of us are in similar situations...I sat on Sunday and watched Mum scratch her face, her back, her bum, her head, her eyes, her nose...and then eat her lunch with her fingers...those same fingers.

Her modesty has gone out of the window, her need for visible cleanliness is non existent, but fortunately her carers will do all they can to keep her clean, dry and comfortable. I cut those same fingernails, but she wouldn't let me clean them.

...and then as I left, she blew a kiss and said "Thank You for everything"....but I don't know who she was thanking.

 

[Chook]

Yes, sometimes I wish hadn't been with mum when she had her stroke. I wish I hadn't stopped her from choking on her tongue. I wish she'd died rather than have to go with the indignity of it all. But a wise woman pointed out to me that it's not my mum who is horrified by it all, she actually seems quite happy, happier than she was in her younger years to be honest. It's us that it's hurting.

Big hugs to you. It's evil and unfair.

Chook
x
edited to say this is relevant to my mum at the moment, I didn't mean that all other dementia sufferers are happy or that mum will be like this forever.

 

[MrsTerryN]

Went to visit mum today. After seeing her I went and saw the sister to express my concern at mums depression .
I also brought up that I want a DNR on mum. She was horrified and queried the decision. Of course all my confidence about the decision went out the window.
My uncle, my son and myself (her three closest relatives) *agree it would be cruel to bring mum back if she has gone.

Mum has in the last 18months

Lost her husband

Her best friend

Her home.

Her dog

Driving


She is miserable

Still isn't walking well from the broken hip

Doesn't enjoy eating even treats

Often vomiting if she does

Has delusions about people in her room, nobody likes her in the home, people won't talk to her and so on

She is incontinent in constant pain even with heavy duty pain relief

Years ago when my grandmother had dementia my mother at the time did comment she didn't want this for herself.

I know the relief I will feel when mum does pass away

She will be with dad and that is much better

She won't be sad.
I really agree with the article. Sometimes the assistance given is too much.
Mum was funny, intelligent, witty and very laconic. She was well renowned in her speciality field she even won a mastermind in Britain back in the eighties I think on the subject.
Today she can't remember people's names and keeps referring to me as her mother.

 

[tealover]

I have nothing to add other than the utter depth of my sadness for all of our relatives who are in this position, I understand only too well how difficult it is watching them change literally by the day.

Reading this thread makes me so unhappy......and has even made me wonder if I am in some kind of denial that this is happening to my Mum?

Early on she would state quite clearly that she had wished she had had cancer so that she could have understood the disease, the pathway she was following, and could have remained of sound mind to take that journey with her family.

Now she just asks "why me? I was never a bad person" as if she believes that this disease is her punishment for her life.

Hugs to all xx