A sad day for me

[Linda M]

Hi,

It has been a couple of years since I last posted but I always look here at the posts and take a lot of comfort from the messages. Today has been a very difficult day and I just needed to share it ...

To explain, my great aunt (88 now) has been in a nursing home for a couple of years now and today was the saddest day of those times. In recent weeks she has stopped eating and drinking and was briefly in hospital last week to be re-hydrated.

A month ago she was able to smile and although she didn't have a clue who I was, she was able to speak.

Two weeks ago she couldn't seem to understand anything I said and had been vomiting a lot despite not eating much.

But today was the very saddest day because she had deteriorated further and seemed actually unable to understand what food is or how to eat/drink. I tried to feed her a yoghurt and there was absolutely no response from her whatsover - if she had spat it out at least it would have been a response. It just sat on her tongue - I tried everything to encourage her to lick, touch, swallow but nothing.

I thought I was prepared and feel in my heart she has given up and is tired of life. The staff say she can be aggressive and refuse to eat or drink. I know she probably doesn't have long left but I got incredibly upset about seeing her so lifeless and unresponsive. I tried just stroking her hair and her hands and talking to her and there was nothing, no flicker of anything. She looked so haunted - she was breathing and her eyes moved a little but that was about it.

Does anyone know - how long can someone survive on just fluids? And also, will she be in any pain at the moment?

I had to phone my mum tonight and I there wasn't one positive thing I could say to her about the visit - no flicker of anything in my aunt's eyes.

Thanks for reading - my mum has said if I don't want to go back and see my aunt I shouldn't feel duty bound ... but that's another thing I don't really know how to deal with. I keep thinking that if there's even the smallest flicker of response it's worth being there.

 

[Skye]

Dear Linda

I can understand your distress. It's so hard to want so much to make someone well, but feel you are getting no response.

Be comforted that your great aunt probably knew you were there, and felt your love.

I can't decide for you whether or not to visit -- either way you're going to be upset. If you do go again, just stroke her hand and talk to her gently. That's all she needs just now, and she will be able to hear you.

I don't know how long she can last without eating. My mum lasted several weeks in that state, and eventually developed a chest infection. After that it was a matter of days.

But this may not be the case with your great aunt. She may start to eat again, she may develop an infection more quickly. Is she having any medical treatment at the moment?

Please stay in touch and let us know how she gets on. Apart from that, we need to know that you're all right. We're all here to support you.

Love,

 

[Brucie]

Hi Linda

it is a personal decision that each one of us has to make and feel right about afterwards.

There is no right or wrong, only what we ourselves feel we should do.

I tried just stroking her hair and her hands and talking to her and there was nothing, no flicker of anything. She looked so haunted - she was breathing and her eyes moved a little but that was about it.

In your position, I'd be going along just to do what you have described - giving her some personal contact. If she does not recognise it then you have the peace of mind that you tried. It may be that she can recognise it, but is no longer able to show it, in which case not only do you have peace of mind, but there will be part of her that knows someone is with her.

That's the best we can hope for. It is not so much to do, if we feel we can, and no-one is sitting in judgement.

Take care.

 

[Linda M]

Thanks Bruce and others - I do feel some comfort in knowing she might be able to hear me and I think that if I can still go and offer my presence by simple gestures, that is at least something positive I can do. I guess at this stage I shouldn't expect too much in way of a response but I figure whilst her eyes are still moving she can see something.

 

[Tina]

Two weeks ago she couldn't seem to understand anything I said and had been vomiting a lot despite not eating much.

But today was the very saddest day because she had deteriorated further and seemed actually unable to understand what food is or how to eat/drink.
I know she probably doesn't have long left but I got incredibly upset about seeing her so lifeless and unresponsive. I tried just stroking her hair and her hands and talking to her and there was nothing, no flicker of anything. She looked so haunted - she was breathing and her eyes moved a little but that was about it.

Does anyone know - how long can someone survive on just fluids? And also, will she be in any pain at the moment?

my mum has said if I don't want to go back and see my aunt I shouldn't feel duty bound ... but that's another thing I don't really know how to deal with. I keep thinking that if there's even the smallest flicker of response it's worth being there.

Dear Linda,
reading your post reminded me of a situation my family and I were in some months ago. I too had a great-aunt who was in much the same state as yours is now and we went through similar feelings and had similar questions. My aunt had stroke-induced vascular dementia and after a massive haemorrhage had lost all ability to speak, swallow, eat, and her right side was paralysed. It broke my heart to see her like this. Because we had always been very close, I visited whenever I could. I don't live in the UK and every time was precious. She too went from flickers of recognition, being awake, holding my hand and returning pressure to a state in which there was no response whatsoever. I wanted to be with her as much as I could, I was sure she could hear me, and because of that and because she always meant so much to me, I wanted to be there. For me, it felt very peaceful and comforting to sit with her, stroke her hand and face, rub her legs, have a little chat with her, etc. It was the most natural thing in the world. But it broke my heart as well. I didn't get any kind of reaction in the last days, but deep down I felt she knew I was there and might have been comforted by my presence. What was right for me is not automatically right for everyone else. Go with your feelings, visit when you feel like it and if you find it hard, no one is really in a position to judge you. You do what you are comfortable with and that's all that counts. It will be right for you.

Aunty Jean was on fluids after the haemorrhage and the docs thought she might not last very long. However, she got stronger and was fitted with a feeding tube. At some point she caught pneumonia after vomiting because she had lost the reflex to cough and clear her lungs. She passed away peacefully about 3 days later.

As long as your aunt is being hydrated and getting fluids, she might well remain in the state she is now for a while. No one will be able to give you an exact answer as to how long.

I don't think she is in any pain. Is she on medication? Have you noticed any visible signs of discomfort? With my aunt, we were assured she was comfortable and painfree and we had the impression she was. We noticed when she wasn't and the docs and nurses, who were brilliant throughout, were able to relieve her of pain and discomfort through medication.

I know it's hard...hard to see a loved one in this state, worrying about pain and wondering what will be next. Asking questions and feeling heart-broken.

Take care and let us know how things go. Thinking of you.
Tina

 

[Linda M]

Hi Tina,

Thanks for sharing your experience - it does help immensely. My aunt is supposed to be on medication but unable to take it or it goes in her mouth but doesn't go down. (last month she had spat out the medication and hidden it in her hand and her hands were bright orange!). I don't get the impression she is in any pain at the moment. I think what shocked me today was that her deterioration seemed so dramatic and I was just not at all prepared for the overwhelming grief which came with that today. Over the years there have been points when I have cried (usually when I realised she had gone to the next stage of dementia) and I have read up on what would be ahead but now it is actually here I feel heartbroken. It's almost like knowing but not quite believing until it is there in front of you ...

 

[Tina]

Over the years there have been points when I have cried (usually when I realised she had gone to the next stage of dementia) and I have read up on what would be ahead but now it is actually here I feel heartbroken. It's almost like knowing but not quite believing until it is there in front of you ...

Dear Linda,
how I understand that feeling! Like Helen said on another thread, you don't ever really give up hope that there might be some little improvement, a flicker of recognition, a movement...and when another stage is reached on the downward spiral, it is heart-breaking.

I always found consolation in remembering the good times and being with my uncle during what was a hard time for him. On my last visit Aunty Jean was developing pneumonia, and I knew I wouldn't see her again, and that was the hardest part of all because I knew I would be going back for a funeral next time. But again, even though the sadness and sorrow can still be overwhelming at times today, there was / is much comfort in knowing she was painfree and looked after to her last breath.

Do what you feel most comfortable with. It will be the right thing.
Tina

 

[Linda M]

The nursing home have phoned today and told us that it is just a matter of time now until my aunt passes away.

Many thanks to all on here for support. Yesterday when I was so upset and had questions it was good to know there was somewhere I could go and just say how I felt.

I feel very sad but am now hoping my aunt has a gentle release without pain.

 

[Tina]

The nursing home have phoned today and told us that it is just a matter of time now until my aunt passes away.

I feel very sad but am now hoping my aunt has a gentle release without pain.

You're in my thoughts, Linda. Sending you courage and strength for the days ahead and wishing your aunt a peaceful, quiet end. Can understand your sadness.
Hugs, Tina

 

[Skye]

Dear Linda

So sorry about your aunt. I think you can be sure that she will have a peaceful end, they will know how to keep her comfortable.

You and your aunt are in my thoughts and prayers.

Love,

 

[Carolann]

Dear Linda,
We were in a similar position to you approx. 4 months ago. My Mum had numerous drips but pulled them all out. Mum stopped eating, drinking - even her beloved cups of tea which she said were horrible and why were we giving her such horrible stuff to drink!!. From having her last drink it was approx. 10 days to her death. We sat with her every day sometime as a family, sometimes on our own just stroking her hand and telling her we loved her.
We were all with her when she died, and we told her she could let go and that we all loved her. It was the strangest feeling of my life, it was the greatest relief to know she was not suffering the torment of this terrible illness anymore, but it was mixed with the greatest sadness.
I am thinking of you and your aunt and my heart goes out to you.
God Bless,
Carolann

 

[Linda M]

Hi again everyone,

My aunt passed away just before 8 o'clock this morning. She wasn't in any pain and the end was very peaceful. The funeral is at the end of next week.

I feel a tremendous sadness today but also a hope that she is in a better place with my uncle. She desperately wanted to be with him after he died and now she is. They were married for 59 years and she hated being apart from him.

I would like to take this opportunity to thank you all for your unfailing support. There have been many times over the past few years when I didn't know what to think or where to turn and to know that this board is here has been a great comfort and really helped me face what lay ahead.

I will leave you with one thought. A couple of weeks ago I saw my aunt and she was very confused. In a rare moment of clarity she turned to me and said "I'm not scared" and I like to believe she was telling me that she wasn't frightened of dying and was ready to go. Even in her darkest times there was just the faintest glimmer of the old her, trying to make ME feel better.

My thoughts are with all of you who are still going through the pain of Alzheimer's. I wouldn't wish it on my worst enemy.

With thanks,

Linda

 

[Grannie G]

Dear Linda. Thank you so much for taking time during your sadness to let us know of the passing of your dear Aunt. I would like to offer my deepest sympathy and sincere condolences.

From you last posts, it was clear she had not much longer, left in this world. It must have been a great comfort for you to know she was ready and unafraid.

Thank you for your kind thoughts, even in your grief. TP is still here for you as long as you need it.

With love

 

[Skye]

. Even in her darkest times there was just the faintest glimmer of the old her, trying to make ME feel better.

Linda, that is a thought to cling to as you grieve your aunt.

I'm so glad she passed away peacefully. Of course you are sad, but you know her suffering is over.

Time to take care of yourself now. Post again, whenever you feel the need.

Love,

 

[afghan]

You are not alone

I sympathise with you. My wife is 57 years old, has been ill with Alzheimers since she was 44. Now in a nursing home as she is forgetting how to swallow and chokes on her food. She is losing weight rapidly and is basically starving to death. My sons and I have agreed not to have her peg fed. Why would we wish to prolong her dreadfull suffering, although I cannot imagine being without her.
Best wishes.
Tony

 

[Grannie G]

Dear Tony, my heart goes out to you.

It never fails to amaze me how young some are when they develop Alzheimers. And the younger they are, the younger are their children, who are then deprived of their childhood.

13 years is a long time to suffer and a long time to have to watch suffering.

I wish you and your sons well.

With love

 

[Brucie]

One of the most distressing things for me to see, is Jan choking when her system does not permit her to eat or drink normally. Distressing, for the effect on her, but also because I am so helpless to help her.

Fortunately at present, this happens only occasionally.

 

[Skye]

Dear Tony,

So sorry to hear about your wife. It's so sad that she developed the disease so young.

I think you're right to refuse a peg. I refused one for my mum, I can't see that there is any dignity in being fed in this way when there is no real other quality of life.

All good wishes to you and your sons in this dreadful situation.

Love,