How much longer?

[alirob]

I know no two Alzheimer's sufferers show the same disease progression but I would really welcome people's views on my Mum.

Mum, who has advanced AD, was admitted to hospital nearly three weeks ago after suffering some form of fit. ( That is another story in itself because the hospital wanted to discharge her home at 1.30 in the morning when she was virtually unconcious in A&E, claiming that her vitals were all OK and her blood tests showed no abnormality.) She is still in hospital and her decline has been marked both as a result of the attack and over the last 3 weeks. She no longer bears weight unless supported and can't walk. She shows no interest in food and drink but does drink and eat small amounts almost as an instinctive reaction when her lips are touched. She is a very sorry sight and spends most of the day slumped asleep in a chair. She awakens for seconds at a time, then falls asleep again. She is now extremely ill.

I can't bear the thought of losing her but know that AD has only one inevitable outcome. From other people's experiences, how much longer does Mum's agony have to continue? I really would appresiate to hear of other people's experiences of this awful stage of AD.
Thank you
.

 

[Grannie G]

Dear alirob, welcome to TP.

I`m sorry you are so distressed about your mother`s condition, I know it`s heartbreaking to witness.

I don`t think anyone can give you an informed answer, as you already know all cases are different.

It doesn`t seem as if your mother is in pain. It sounds as if she is just drifting. If this is so, she will not be in agony. The agony is in you, and you are the one who is suffering.

My mother lay for over 2 days, without taking food or drink, before she died. Whether she was sleeping or unconscious I`m not sure, but she was warm, clean, pain free, peaceful and safe, and that`s all I could ask for.

All I can say is just be there for her.

With love

 

[Skye]

Dear Alirob

Welcome to TP. I'm sorry your mum is so ill. It sounds as if she is in the final stages, but who can tell? The final satges can last for hours, days or years.

Have you asked to speak to your mum's consultant? He might be able to give you a clearer idea of your mum's prognosis.

In the meantime, all you can do is be with her as much as possible, stroke her hand, and tell her you love her. Apparently hearing is the last sense to go, so even if she can't respond, she will feel your love.

Let us know how she gets on.

With love and sympathy,

 

[alirob]

Thank you for your support.
Coping is so difficult. I have cried all of today.
I saw her yesterday but live 120 miles away with full-time job and family responsibilities. I want to be with her all the time. I just don't know what to do. I don't feel as though I can ask for time off work (I am a teacher) because I don't know when I will need time because she really is about to pass away. On the one hand I want it all to end for her but , on the other hand, I can't bear the thought of her no longer being with us.

 

[Brucie]

On the one hand I want it all to end for her but , on the other hand, I can't bear the thought of her no longer being with us.

this is a mantra we could all recite!

I'd be speaking to the consultant about the fit, and about her present condition, and what the prognosis is.

As many will say, hospital is the last place for someone with dementia to want to be - the normal wards and staff simply have no conception of how to care for someone with dementia. Feeding, medication, sleep, security, personal care, toiletting - all not good, and people often become worse in all of these when not in specialist dementia care.

Best wishes

 

[Skye]

On the one hand I want it all to end for her but , on the other hand, I can't bear the thought of her no longer being with us.

I'm afraid that's a dilemma we all face eventually. It's awful to see our loved ones suffer, but none of us want to lose them.

I suppose it's impossible to see a consultant today, but I would definitely try to talk to the charge nurse and find out what they think. They're usually pretty honest.

I understand that you can't take time off indefinitely, and you have your family to consider, but it would be awful to drive home and find things had worsened in that time. Spell it all out for the nurse, I'm sure they'll advise you.

I know on my mum's last night she seemed to be sleeping peacefully, and I told the nurse I was going to go home and get a shower and some sleep. She said 'How much would it upset you if she passed away and you weren't here?' Of course, I didn't go, and she died about 3am.

Just my experience, of course, and you have to make the decision. You have my sympathy.

Love,

 

[mel]

Hi Alirob
This is agonising for you....
I lost my dear mum 4 weeks ago......
With mum it was really quick......the change in a day was shocking.....
for my part I was so relieved I was with her at the end......I spent a lot of time with her on her last day and that time is so precious to me and I wouldn't have changed that for the world....
Dad died 2 years ago and I arrived at the hospital too late and that has haunted me ever since.
I'm sure in a situation like yours your employers would look kindly on this.
I think you must think carefully about how this will affect you in the future.
I'm thinking about you at this awful time
Love Wendy xx

 

[Lila13]

We didn't get any warning. She wasn't dying when I visited on the Wednesday, just very unhappy. We were going to have a meeting on the Monday to decide where she was going to go next. Phoned every day, was told "she's OK" by people obviously too busy to answer. Then suddenly on the Saturday morning a phone call to tell us she'd "passed" in the night, from a nurse who immediately started blaming me for neglect.

 

[mel]

Lila I think I was very" lucky". I'd been told mum was ok but something was niggling away at me so I tracked down the sister and mums doctor in charge of her( a job in itself!) on the day she died and asked them if she was dying.......they said "well she's very poorly now and we were going to talk to you in the next few days about her"
I returned later to find she'd deteriorated so much and was told by the sister"I'm glad you came back.....she's very poorly indeed"
I pressed the sister and she reluctantly passed an opinion that mum may not make it through the night......She died at 10pm.
It all happened so quickly on that last day that my brother who lives in London didn't get the chance to see her.

I suppose they have to be careful about giving their opinions ........
On the other hand I think it's unforgiveable,from what you,ve also said in the past, that you were accused of neglect.

 

[plastic scouser]

Hi Alirob

Sounds exactly the same as my Dad.

Dad passed away after about 6 weeks of this state but his decline into this state was absolutely catastrophic. Only 3 months before he'd be playing with the grandchildren and talking about his holidays...

Dad ultimately passed away due to a blood clot in his lung - according to the doctors this is a pretty common cause due to the inertia that sufferers experience.

Whatever happens you can be sure that it won't be the same as anyone elses experience.

 

[lanason]

My thoughts are with you

My mum passed away 4 hours ago and we are waking the kids up so we can drive the 200 miles to be with my Dad. My Dad and my sister were with her last night, and she died peascefully.

I don't think it has sunk in yet, I was expecting her to go downhill slowing over the next few years.

My Dad has been brilliant, to the point of wearing himslf out. He finally put her in a home for a week and came up to stay with us for the weekend. The break gave him a chance to recharge.

She came out last week and then had a infection, and so she has been in hospital for the last few days.

Last weeend, as we are moving house, went to visit the local church, not that I'm religious. We lit candles for her.

And then today she left us.

Hazel Jean Lane - died 4am 3 April 2007.