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[Auski]

Hi all,

Reaching out at this most difficult stage. Mum has been fighting constant infection for the last few weeks and at the weekend she stopped responding to antibiotics.
Yesterday the doctors spoke with us and said it was time to move her on to palliative care.

They've not been able to get an IV line in so they have withdrawn fluids since yesterday morning. She has a morphine drive and on the whole is comfortable.

She can't drink as is having issues swallowing so it's really just a matter of time.

I'm just finding all of this so incredibly hard.
We're playing her favorite music and talking to her but I fee so lost and helpless.

It seems so cruel to not be doing something for her. Unbearable. I want to be her for her. But finding it immensely difficult.

Any words of encouragement greatly appreciated.

 

[marionq]

You are there for her in mind and body and no one can do more at this stage. Hold her hand and talk to her if it does not disturb her. Don't get agitated or exhausted yourself which would be all too easy at this difficult time. Dying comes to us all and you are helping just by being there.

Good wishes and thoughts.

 

[bemused1]

Recently done this for my husband.
It is the hardest thing to do but it is the kindest My husband too had swallowing problems in fact he could not swallow at all.
He suddenly experienced great pain so our only option was to have him on a driver.
The last thing you can do for your mum is let her go peacefully and pain free. Talk to her be there and make it as loving as you can.
Your mum will go with love around her, it's the only and best thing you can do.
Be brave and secure in your love.xx

 

[LYN T]

By talking to your Mum and playing her favourite music is the best and only thing that you can do. The medical team will take care of the rest-meds and so on.

Thinking of you and your Mum at this sad time.

XX

 

[Shedrech]

Hello Auski
you are playing her favourite music; you have been and are with her as much as you can be in body and always in spirit - you are doing all you can
sending much sympathy to you and your mum

 

[Beetroot]

You are doing all that is possible for you to do. It may not seem much, but she is not passing on unloved and alone. That is a great thing.

 

[betsie]

So sorry to hear you are going through this. A similar thing happened to my dad but he could not swallow at all.
I would still offer your mum a drink with a straw maybe if she can still sip a drink. If not moisten her mouth regularly with pink sponges on a stick I dipped these in sweet tea sometimes.
Also lots of Vaseline on lips. I also moisturised his arms and legs.
Look out for pressure sores on the ears ( put sudocream on them if they start going ride), knees and feet. Make sure she is turned every few hours even if she is on a pressure mattress.
My dad was also on the driver but I asked for extra painkiller if he looked in pain. They can also add another drug if her breathing becomes rattled.
I used to read to my dad or put the hospital radio on. I did find it so hard, some days I was ok others I felt like I was going to have a panic attack. My dad lasted 19 days once fluids were removed so please stay strong and look after yourself.
As the doctor said to me during one of my many breakdowns - they will go when they are ready and all we can do is make them as comfortable as possible until they are.

Just to add I went every day, but my dad died shortly after I had left one day, I knew that was going to be the day. Don't beat yourself up about being there all the time you can only do as much as you can and are able too. Sending you a big hug. Stay strong.

 

[Auski]

Thanks all for your kind words and advice and for taking the time to reply.
Mum is a fighter and doesn't seem ready to go just yet.
Had some lovely smiles this morning, as much as this is torture for us, I'm glad I'm able to be here.

 

[Auski]

Betsie, I also wanted to thank you for your reply. I'm so sorry that you had to go through this stage with your dad for 19 days. It's pure torture. I'm glad you found the strength to continue to stay with him.
You are so right that it's impossible to be there all the time, and just you saying that has helped to alleviate some of the guilt that I was feeling about coming home to sleep.

Your comment about panic attacks also
resonates strongly for me as I've been feeling rising waves of panic over the last few days so glad to hear I'm not the only one (although I'm sorry you had to experience them too)

Alzheimer's is certainly a journey. I still can't quite believe it's all about to come to an end.

Thank you for such kind words of support and I'm really sorry to hear that your dad has passed. Big hugs to you.

 

[Dollypops]

We aren't at this stage yet but I am reading all the forums for advice and information. Your situation struck a chord. I sat with my Mum for nearly 4 days, day and night only dozing in a chair next to her hospital bed. I talked to her about silly things, everyday things, and her garden saying what we could do when she came home ( knowing that wasn't going to happen). Like has been mentioned moisten her lips with a little liquid on the pink sponge sticks. I also moisturised her face, arms and legs. It felt as if it was the one thing I could physically do for her and I used some lovely moisturiser I had gotten her for Mothers day a couple of weeks before. Sweet Pea & honeysuckle. 2 of her favourite flower scents. I just had the thought it would comfort her. She sneakily passed after I left the room for literally 30 seconds to phone my sister to tell her to get my dad( who wasn't well himself) and come over. I went back in and she had quietly gone.

Just do what you feel is right, what you feel your mum would like- just love her. Sending you comfort and love. X

 

[Gwendy1]

I'm so sorry, I was with my mum when she was at this stage, she didn't have dementia, but was at the end of her life. I look back and value the time I spent with her, just being there. This time is precious, but very painful. Xx


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