Mum at end stage Alzheimer’s

[Alison66]

Hi, my mum has Alzheimer’s and was officially diagnosed in 2012 although it was obvious to me (her carer) that things had been changing for at least 3 years previous to this. Mum was cared for at home until August 2015 when she moved into a nursing home as the illness was too much for 1 person to deal with full time.
Things progressed and slowly got worse. When my mum went into care, she was still mobile and could join in conversation to a degree. About 6 months after being in care mum had a major seizure and the family were called round as mum was expected to pass away at that time. Since then there have been more seizures, chest infections, being treated with antibiotics but the deterioration and progression of her disease was getting faster. Every time antibiotics were used mum would come back but in a reduced state each time until earlier this year we as a family decided that there should be no more active intervention if any further chest infections occurred. Strangely enough she hasn’t had one since. However this thieving disease was progressing ever faster. 2 weeks ago mum had another major seizure and things have spiralled downward. Suddenly on Monday mums ability to swallow left her so she has had nothing to eat or drink since then. I feel lost and helpless and just wondered how long this would go on. I must say that so far she is peaceful and sleeping most of the time. I’m not coping because life circumstances dictate that I just can’t be with her constantly. Every time I leave, I tell her I love her and tell her it’s okay to go and she’s the best mum I could ever have wished for. I know no-one knows how long someone can keep existing as a shell of the wonderful vibrant woman and mum she was but it just doesn’t seem fair that her heart keeps beating though her life is gone.
Sorry for long post but does anyone have anything to help me get through this. I just don’t know how I’ll go on without her but at the same time I want her to have real peace.
Thanks for taking time to read through this ramble and thanks in advance for replies.
A.x

 

[karaokePete]

I'm sorry to read about the situation. I'm also sorry to say that there isn't any answer to your question as the final stage can go on for such a variable time.

It may not be any comfort, but I have read many times that a person will hang on until they are alone to let go. Perhaps to spare loved ones the final agony. I think you are taking the correct action in saying you love her and telling her she can let go when you leave.

This is the right place to share your feelings at this time as we all understand.

 

[BrianSausage]

I totally sympathise with you, as I am going through something very similar.
My mum was diagnosed 3 years ago, but I believe she had been displaying symptoms for at least 18 months prior to the official diagnosis.
My mum moved into a NH in Jan 2016, and has received excellent care. However, she had a fall in Sept and fractured her hip. She has not been herself since.
Her GP called the hospice in 3 weeks ago and after the assessment, we were told that if she continued to deteriorate at the rate she had been, she had a matter of weeks left.
She’s barely eating or drinking and has had to have drugs (prescribed by the hospice) to keep her calm most days.
My sisters have travelled from Scotland to say their goodbyes and I feel that I can’t live my life until my mum passes, as I’m on an emotional rollercoaster.
One day she’s crying in her sleep, one day she’s calm and then we have days like today where she’s talking for England, but talking utter rubbish!!!
The hospice have been in again today and said this could continue for months!!
I feel like I have already grieved for my mum and what I see every day is just a shell.
I just wish peace for my mum now x

 

[Alison66]

Thank you both for your replies, I feel less alone. Right now I’m in bed with my mum costing in just like old times. Hopefully she’ll have a peaceful night. Goodnight A.x

 

[hilaryd]

Just to add to the 'thinking of you' comments, @Alison66 - our mum deteriorated very rapidly indeed, and her end stage was really just a matter of days, but the conflicting emotions are so hard - as you say, you want her to be peaceful and not suffer, but you don't want to lose her either. We were with our mum when she died, for which I'm grateful in some ways, but to be honest I don't know whether she knew we were there and, like you, we'd been saying our goodbyes each time we left her for a while before that. It's heartbreaking for you, but she knows that you love her, and she's comfortable and peaceful, which is all good - wishing you comfort for whatever time is left xxx

 

[Theresalwaystomorrow]

Hi @Alison66 & @BrianSausage
So sorry to read both your stories my heart is with you both x
I do more reading than posting on here but just had to thank you both for posting and sharing these times as it’s something we all can probably relate to.
I do agree with you regarding treatments at the late stages, I thing keeping pain free is more appropriate because tbh keeping someone like that going for what?.
On a daily bases I see people bedridden and on treatments without a clue what’s going on and it’s pitiful to watch.
Big hugs xx

 

[Alison66]

Hi @Alison66 & @BrianSausage
So sorry to read both your stories my heart is with you both x
I do more reading than posting on here but just had to thank you both for posting and sharing these times as it’s something we all can probably relate to.
I do agree with you regarding treatments at the late stages, I thing keeping pain free is more appropriate because tbh keeping someone like that going for what?.
On a daily bases I see people bedridden and on treatments without a clue what’s going on and it’s pitiful to watch.
Big hugs xx

Thank you for your reply. My heart is sore and my only wish is for mum to go now as peacefully and quickly as possible. She is just a poor soul somewhere between worlds. x

 

[Alison66]

Just to add to the 'thinking of you' comments, @Alison66 - our mum deteriorated very rapidly indeed, and her end stage was really just a matter of days, but the conflicting emotions are so hard - as you say, you want her to be peaceful and not suffer, but you don't want to lose her either. We were with our mum when she died, for which I'm grateful in some ways, but to be honest I don't know whether she knew we were there and, like you, we'd been saying our goodbyes each time we left her for a while before that. It's heartbreaking for you, but she knows that you love her, and she's comfortable and peaceful, which is all good - wishing you comfort for whatever time is left xxx

Thank you so much for your reply, it’s such a sad lonely time and I hoe for my mums sake the end comes soon. x

 

[Alison66]

Hi, it’s Alison again. My mum is still hanging on by what seems to be a thread. On Friday teatime she started a period of cheyne stoking and my previous experience of this is that it’s lasted a maximum of 2 hours then the person including my own dad has passed away.
Mum was cheyne stoking for about 5 hours and was quite gurgly but not in distress so was given hyocine to dry up the secretions. About an hour or so later the cheyne stoking stopped and hasn’t returned. She is slowly deteriorating and her breathing has become more and more shallow. She was given more hyocine last night again gurgly but no agitation. My question is, to anyone who has any experience or opinion, does administering hyocine to a patient who isn’t in distress slow down the journey of the end to someone’s life.
I just feel this is torture for my mum. And I feel like I’m staring to crack under the pressure of watching my beautiful mother struggle on. Please if there is a God take her out of this existence and let her rest in peace. Alison.x

 

[70smand]

Hello Alison,
I am so sorry to read what you are going through with your mum but to answer your question, hyoscine will in no way slow your mums journey down. It is merely used to treat the symptoms of excessive secretions, which is usually more distressing to listen to than for the person being treated. There are different medications, such as midazolam that can be used to treat distress.
It does sound like your mum is extremely poorly though and the changes in her breathing appear to indicate that it won’t be long.
My thoughts are with you xx

 

[Cazzita]

Thinking of you Alison, it must be heartbreaking. Wishing for peace for you all x

 

[Alison66]

Hi everyone, I've tried to update on my mums journey several times here since my last post but had to stop as I was feeling too sore in my heart.

My mum gave up her long struggle last Tuesday evening. For her I am glad that she is out of her suffering as it was very hard for her.

I feel numb, then overwhelmingly sad, then angry, then sad and back to numb. I've spent my days since in a daze and with the rest of my family making arrangements for mum's funeral which isn't until a week tomorrow. It's an awful limbo time. I've lost my best friend and would give anything to have a conversation with her and I do in my head but I feel lost.

I just want to thank everyone who took time to read my thread whether you wrote anything or not.

 

[deepetshopboy]

So sorry for your loss my mum died in 2011 i was also her carer and she died in a hospice with terminal cancer I felt exactly like you in limbo numb lost angry and very very sad lonely .sending my thoughts to to you xx

 

[Alison66]

So sorry for your loss my mum died in 2011 i was also her carer and she died in a hospice with terminal cancer I felt exactly like you in limbo numb lost angry and very very sad lonely .sending my thoughts to to you xx

Thank you very much for your reply, mum was such a big part of my daily life, I feel so lost, I don’t even have a partner to talk to so will be making use of this forum and maybe even be able to give help and support to others as they have to me. Thanks again

 

[AliceA]

Just love, I am glad you are staying on the forum. Xxx

 

[canary]

Im so sorry to hear your news @Alison66
(((((((((((((hugs))))))))))))))

 

[Theresalwaystomorrow]

Hi @Alison66
Sending condolences to you and hugs xxx
Your journey has helped so many so thank you x

 

[Shedrech]

sad news @Alison66
your mum is now at peace
grief is a very real turmoil, I feel for you - be gentle with yourself

 

[hilaryd]

So sorry to hear this news @Alison66. I hope the end was peaceful, and that you can find some peace too amidst the grief - funeral planning can be a temporary distraction. Almost a year on, I still look at TP most days - it continues to be a big source of comfort to me, and I hope it will be for you too. You did all you could for your mum, and you can be proud of the time and love you gave her xxx

 

[Bunpoots]

My condolences @Alison66