Another Christmas and Mum is still here

[sunray]

I just read one of my old thread from Christmas 2010 which I thought would be Mum's last Christmas. Wrong. All I can say of Mum's Alzheimers is that it must be the very slowest kind. This time last year she was mostly sleeping, still some mumbled phrases, in a comfy chair...no real responses.

This December she is mostly curled up in her comfy chair, no responses, some short periods of alertness. She still opens her mouth and swallows food, she still responds to some light stimulus, that is about all her reactions now.

She and two of her room companions in her Nursing Home four share room are at the same stage so today when I went for a vist all three were side-by-side in their comfy chairs in one of the lounge areas sound asleep. They really looked like three babies in bassinets, all curled to the one side.

I can't say she is neglected, she is warm and cosy, fed and washed and today sleeping in air-conditioned comfort with Christmas Carols playig softly in the background.

What I ask is: "Is this really living?"

Sue.

 

[Contrary Mary]

I just read one of my old thread from Christmas 2010 which I thought would be Mum's last Christmas. Wrong. .


What I ask is: "Is this really living?"

Sue.

Oh, I know the feeling, Sue. I really didn't expect my Mum to hang on as she has.
She is still at home, but very bad today battling with a very bad bout of constipation which is highlighting the troubles she now has over eating and drinking. I'm afraid I battle with some very mixed emotions.

I wish you a peaceful Christmas.
Mary
x

 

[Claire]

Just like you, Sue, I thought that Christmas 2010 would be mum's last. Sadly, I was right, as we lost her at the end of October. For most of the last year, I had the same feeling as you - is this life? Don't get me wrong - I will be eternally grateful for the loving care she was given at her care home, but this wretched disease takes everything away from the sufferer and gives nothing in return. I castigate myself for hardly shedding a tear, though she was dearer to me than anyone on earth, but maybe seeing her reduced to the equivalent of a baby, and knowing how much she would have hated it, is the reason for that.

Wishing you a peaceful Christmas.

Claire

 

[Chemmy]

I castigate myself for hardly shedding a tear,

Don't. You've been grieving for years. We all have. I'm in a similar position this Christmas as you were last year, and I can't imagine Mum lasting another year. However, if she goes, the only tears I will shed will be ones of relief that her ordeal is at last at an end.

 

[Christinec]

Relief that others feel like this. I thought Mum was dying in January following a severe infection or posibly a stroke. Yes she is still with us but what is her quality of life? Christmas makes it all worse and personally although I will try to do the best to make it good for my husband and adult children I just want to try to get through it and back to normal.



Thanks for the posters on this thread. I have just had a conversation with a colleaugue who has as always made me feel worse with her attitude to another friend and her mother who has just had a stroke. Good to know I am not the only person who would like their Mum not to suffer more than she already has over the last 10 years.

 

[hollycat]

What an eye opener!

I feel normal. My dad died in 2000 having suffered dementia for numerous years.

When my hubby rang me to tell me,he said he had some good news and some bad news.........both pieces of news were the same.......my dad had died.

I said at the time my dad died 10 years ago. We both felt terrible when we said we were PLEASED FOR DAD......this post has made me feel far more comfortable.

Boy life can kick you sometimes as mother now suffering alzheimers. In the very nicest possible way, I hope something else takes here before the later stages as it is no life for her.

And now I feel guilty again for thinking like this !

 

[thatwoman]

I too share your emotions. We thought Dad couldn't survive another year after his stroke in October 2010, but he's still here. In July he had another stroke and was briefly on the Liverpool Care Pathway. He came out of his coma in true Dad style: the door banged shut and he sat up and said, "What the bleep are you doing here!" to the group of us I'd assembled to say good-bye to him.
He's not suffering much (he's on morphine patches), but he's not happy, and he has no life. He can only eat food that's been blended and he takes no pleasure in it. One day recently he looked at the brown mush on his plate and said, "I've had this before. Well, it looks as though someone's eaten it before, anyway!", and I'd have to agree that's exactly what it looked like.
I sit with him every day because I can't trust the staff at the home to remember that he can't eat solid food. My husband is retired, so he goes at lunch, then I go after work and help Dad eat his tea. It's not so tiring as when we looked after him at home, so I shouldn't complain, but I'm just worn out with it all. I think he has had enough, but maybe that's just me being selfish. Every night I take the phone to bed with me,"just in case", and if I forget to take it out with me, I have to go back home. I live constantly expecting the worst. Is that normal? I don't think I'd be too upset for him, because he's had a good innings and he doesn't take pleasure in anything any more. I know it's not up to me, but it's refreshing to be able to say how I feel.
Let's hope we get Christmas out of the way as painlessly as possible, so we can move on to another year. I hate this false bonhomie. Peace to you all,
Love Sue xxx

 

[piedwarbler]

What a reassuring thread this is. I feel the same. Wishing everyone a peaceful Christmas. X

 

[Margaret W]

Mum went into the Care Home and was expected to live a long and unhappy life, with her dementia deteriorating. As it happens, after 15 months, she died suddenly and thankfully speedily, and didn't have to live through the horrors of increasing symptoms of dementia.

There are articles in the press at the moment about Do Not Resucitate Orders. I am not an expert. But I might have considered placing one on my mum. Cos when she had her attack, the medics spent an hour doing their best to bring her to life. I have since learnt that that included several interventions that could have caused her great physical distress. I wish she had had a DNR notice pinned to her chest. As it happens, I think she was already dead before they attempted the Resucitation. Of course, I could be wrong, and I really don't want anyone to tell me I am wrong.

But when dad died (2 years earlier), I am not so sure. I told the doctor that I didn't want him to suffer for no purpose, and that if there was no hope I didn't want his life prolonging. So how might that have been interpreted? Dad had advanced stomach cancer, and a history of heart disease and angina. No, I didn't want him to suffer, but I didn't want him to die prematurely either. It is unclear which condition killed him, the death cert said cancer and pulmonary failure. So when his heart failed, did they try to resucitate him or not? Should they have tried?

No point in going over it now. It won't bring him back. And he didn't have Alzheimers so it isn't even relevant to this forum. I was just thinking aloud.

Thanks for listening,

Margaret

 

[Chemmy]

I was cross when I found out from a nursing friend that the pneumonia jab, which Mum was offered when she went into the CH, lasts ten years. It's not for nothing that pneumonia was known as 'the old man's friend'. Let's stop you dying of pneumonia so you can become doubly incontinent and unable to communicate? Where's the sense in that?

I seem to have got myself embroiled in a row on another thread over inheritance/funding issues If I was going to fight a cause, it would be how we manage end of life issues humanely, not arguing about who pays for care.

(Sorry, ranting )

 

[sunray]

Ray gets pneumonia, Mum doesn't

My mum doesn't get pneumonia and no bronchitis since she gave up smoking twelve years ago. She does have TIAs but in her present stage changes in her condition are not really noticeable. She has had a few near death experiences over the past two years but one day will die of close to natural causes I should think.

I agree Chemmy, no-one looks at end-of-life issues very cosely but then some people think even making a will predisposes you to sudden death.

Sue.

 

[sl638e]

I think this thread will strike a chord with every one of us dealing with the tragedy of Alzheimer's.

Every time I see my mum, I'm filled with conflicting emotions. I love her dearly, yet the person I love really isn't there any more. Often I don't recognise the stranger who now lives in my mum's body.

When I remember the active person she once was, it's hard to imagine how she can bear to live within the four walls of her flat, sleeping most of the time, doing nothing except occasionally listening to the radio or trying to read the newspaper.

She used to have a busy work and social life: she didn't retire until she was in her mid seventies; she managed two large gardens single-handed, and she was always off to the theatre, opera or exhibitions. People used to say how happy and cheerful she was, how young for her age. But now all the carers see is a miserable, grumpy old woman who smells and looks a mess.

That's not living.

When I was a child, my mum showed me some medication she had hidden away. She told me that it was being kept for a special purpose, if ever she needed it. Apparently, when taken with a bottle of whisky it could provide a pleasant way to slip away. This was a bit shocking at the time, but also I was aware that my mum was a very level-headed and practical person who wouldn't use such a thing lightly, so I wasn't too worried.

Sometimes I wonder where that medication is now, and whether my mum would want to take it. I've looked in her medicine cupboard and I don't think it's there, so maybe she threw it away in the end.

But if one day they found her in her bed with a bottle of whisky beside her, in a way I'd feel happy.

Anyway, for now I'm just concentrating on this Christmas. The way things are going, I think it'll be the last time she makes it to the family celebrations. Even that's touch and go - not sure if I'll be able to persuade her to get out of bed and dressed on Christmas morning. Fingers crossed...

 

[Chemmy]

I'm certainly not shocked by your post, sl638e; I've already said to my husband I'd consider doing something similar if I found myself faced with what my mum is going through now. Trouble is, once you have AZ, you wouldn't have the wherewithall to carry it out. And at the end of the day, even if I was compos mentis, would I actually have the bottle to go through with it? I suspect not.

My dad became suicidally depressed when he realised what was happening to Mum. He sought and received treatment, but to no avail. Suffice to say, he is no longer with us.

I understand why he did it, even though I have been bl**dy annoyed with him leaving me to deal with Mum these last nine years, but I still defend his right to do what he wanted. It was his life, after all. It's no-one else's business.

 

[nelliepledge]

alternative perspective - thank you all so much for sharing this

Hello all

Although I've browsed TP on and off over the past 3 or 4 years as a visitor this is the first time I've felt like I wanted to sign up and post a reply.

Our mum is also in the slow lane - she's been in severe AD stage for such a long time (7 years now). It is so reassuring to know there are people on TP who are also going through this long drawn out final stage and also feel the same way, so angry, frustrated and guilty.

I know everyone's entitled to their own views and feelings and this is probably the guilt thing at work but there's a sort of of group think at work which means actually saying you wish someone would die is not acceptable. But its totally logical and the right thing if you don't want a person to suffer with this terrible disease any more.


This stuff always comes to the forefront at Christmas doesn't it. Ive been getting really edgy about the thought of seeing mum on Christmas day its so gut wrenchingly sad. You're supposed to be cheerful and up beat at Christmas aren't you but I just have it there at the back of the mind all the time at the moment - is 2012 going to be the year when the misery ends for us all especially mum. And the only way that can happen is if the old dear dies......

 

[Chemmy]

but there's a sort of of group think at work which means actually saying you wish someone would die is not acceptable. But its totally logical and the right thing if you don't want a person to suffer with this terrible disease any more.(

Oh, absolutely. (Glad to see you've come out of the shadows!)

We are far too squeamish about talking about real death in this country, even though we 'witness' it in gory detail all the time on TV or film. There is nothing to be feared from being dead (I'm spared any religious hangups there, thankfully) - it's how you get there that's sometimes so awful. You are wishing for a good dying - short, dignified and painfree, I'd guess - not for the death itself, nelliepledge, and there is no shame in that.

 

[sl638e]

You are wishing for a good dying - short, dignified and painfree.

That's exactly it. What we wish for isn't so much for the sufferer to die, but for them not to have to live a horrible life.

As there's no cure for Alzheimer's, the only way out is by death - so that's what we have to wish for. It surely isn't wrong to feel that way, but we naturally feel guilty all the same.

I often think my mum does wish she was dead. I can see feels there's no purpose in her life, and in her more lucid moments she's aware that she's a burden on other people (mostly me). I try to make her feel that she's still valued as much as possible - I ask her for advice, and I thank her for helping me (she's still able to give really useful opinions on anything that doesn't involve using her memory). I also try very hard to get her involved in family get-togethers. She always responds well to these, and is still able to chat and laugh with people once she gets going.

Hopefully she won't ever feel the need to take her own life, but if she were to slip gently away in her sleep I think it would be a great kindness.

 

[sunray]

not wishing for her death

I've already been called to Mum's bedside a few times when according to the nursing staff or a doctor she was definitely dying but there she is, still going. I don't have any hang-ups about death, in my volunteer chaplaincy I often sat with the dying. I guess when it is actually your own Mum and you sit for hours and hours watching the person you love gasping for breath or receiving what is obviously going to be their last medication it is more difficult than sitting with a stranger.

Mum has been through the "scattered thoughts, scattered language, shuffling walk, bedraggled appearance" stage. She has been through the "muddled, mumbling, hardly walking, falling down" stage. Now she is clean, tidy and mostly sleeping, I think a visit is much more painless for me, sadder of course too to think I am missing that last stage much more than I thought I would and longing to hear her voice once more.

Mum is beyond needing to be protected even as no-one wishes her ill or is likely to want to harm her. The nursing staff are in a routine with her and just see to her most basic needs, for her to be washed, fed, kept clean and dry, sat in her comfy chair. She is fed pureed food and thickened lquids. It is strange that in a way her life now is so peaceful. I would not have imagined it would be so with so many stormy passages behind us.

I have found this whole thread very interesting as I never imagined the first post would have recieved all these comments.

Sue.

 

[Emma1980]

What a relief to know I'm not alone!

I'm so glad that I joined the forum this morning. My Mum is only just 53 and has a form of dementia, type unknown, although the cerrebelum at back of brain is eroding faster than rest of brain. This year has been hell. Mum had two falls in one day last December and went in to hospital for seven months. So last Christmas she was in hospital with her leg in plaster and arm in a sling. Doctors noticed her behaviour was odd and that she'd get very distressed so they did a brain scan and various other tests such as the Mini Mental State examination. Scores were low and the prognosis wasn't good. Mum was moved to a pshyciatric unit for the last three months of stay and started improving, doing well in physio, walking and doing stairs, although has since declined.

Mum went home in July, to be looked after by her live-in ex partner/friend who is 75 and not in best of health. In Sept we got social services involved and home help going in but it just isn't enough, her behaviour is getting worse, she screams/shouts regularly and can't be left on her own aside from when she goes to bed. Terraced house and the neighbours have had enough, they have young children. I'm 31, an only child, no relatives, and have a full time job, mortgage, imminent step-son, and find it difficult to visit every weekend over night so i can give her carer a break to see his own family. It has sadly come to the point where I think she needs to go into a residential home, paperwork is underway. I feel such utter guilt, like I'm failing my Mum and that in fact I should sacrifice my own life for hers and take over her care. I know I can't do this though and nor do I want to.

I wish every day that I will get a call to say she went to sleep and didn't wake up. I just can't face having to see how upset she'll be going in to a residential home, although I know it would be for the best. I just wish this was over and that I could enjoy my life, I'd be so happy if it were not for all this. I feel as though my Mum has already gone, she started going years ago before we knew it was dementia, and now I'm left with this huge responsibility of choosing my Mum's fate. Mum's still with it enough to know what is going on which makes it even worse. I just wish it was all over and soon.

It helps to read that others are feeling this too and finding Christmas such a hard prospect. I've rented a (detached due to potential Mum screaming) bungalow for four nights over Xmas, it will be just me and her, and I'm dreading it. It's so sad thinking of Christmas's gone by and how she used to be. My boyfriend is going to his folks in Norfolk for Xmas and I so wish I had the freedom to go with him, I can't take Mum there because of how she is. Maybe this will be Mum's last Christmas, who knows, I feel guilty for hoping that it is but I'm also going to try my best to make it good for her.

But every morning when i turn my phone on I hope for a message to say she hasn't woken up, I just can't face the troubles ahead and feel so alone. I often think 'one relative, you'd think I'd be in luck' but no. It isn't Mum's fault but I cannot wait for it all to be over. Sad times indeed.

Emma

 

[Chemmy]

Hello Emma.

I hoped writing all that down has helped. I know when I first admitted these feelings to a rep from the Alzheimer's Society and she told me it was normal to feel like that and I shouldn't feel guilty about these feelings, it was a huge relief. She assured me that it didn't make me a bad person or an unloving daughter.

It's hard for those of us whose parents are in their 70s and 80s to deal with these issues, but to be faced with it at your age, must be terrible. One thing I can say is that you have no alternative to looking for care for your mother and you will feel a whole lot better when she's settled and safe.

Feel free to vent - that's why we're here.

 

[Emma1980]

Hi Chemmy,

Thank you so much for your comments, I know there is no choice but to go for residential care for my Mum, but it will be one of the hardest things I ever have to do.

Emma