Struggling to cope whilst mum is at the end of her life

Really looking for some sort of comfort and support. My mum has been in a home for 20 years as she has MS and is totally paralysed from her neck down and fed via a PEG. At Christmas she became really unwell and I stayed at the nursing home all over Christmas as we thought she was just hours away from passing. They even administered her end of life drugs. However, seven weeks later, she is still here. She is extremely poorly and weak, spending most of the days asleep. When she is awake she is really struggling to communicate now.
I am definitely suffering with anticipatory grief. I haven’t slept properly since this all started and can hardly eat. I’m constantly imagining how the end will be and constantly worrying about how on earth I’ll cope without her. She’s my everything. I won’t even be able to look back on her life and think “well at least she had a good life”, as her life has been so hard with the MS taking parts of her away for years and years. I just honestly have no idea how I’ll cope when the inevitable happens. Apart from during Covid, when we weren’t allowed to see her, I’ve visited her every single week for 20 years in the home, since October, since she went downhill, I’ve been going a lot more often. I’m already dreading her being at the undertakers as she’s never been on her own in over 20 years, she’s always surrounded by lovely staff in the home. I hate the thought of her being on her own at the undertakers after she’s passed. Basically, I’m just struggling massively and the worst part is yet to come.


I’m sorry for what you’re going through. I have MS and Epilepsy. I lost my husband in November 2023. I looked after him at home.

Your grieving has started. It started by the sounds of it quite a while ago.
Coming on here and reaching out to others is a good thing. You’re not alone, even though it feels like it.

You’re dealing with a lot. Don’t be hard on yourself. What your feeling is normal in the situation you’re in. Have you got someone at the home that you can talk things through with.

It might to start thinking about getting grievance counselling now. Start talking things out.

Be strong. Sending hugs :people_hugging:

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Hello @Beekind16
I’m so sorry you are feeling this way and I really have no words that will change that. All I can offer is my experience of my dad’s passing. He was in a hospice because he had terminal cancer. He had my brother with him for those last moments and myself and other siblings were with him the evening before. As upsetting as it was and still is -his passing was peaceful and he couldn’t suffer any more pain.
When he was in the care of the funeral directors, we visited him in the chapel of rest. He had been dressed in a suit we had taken there and also a few personal items to be kept with him. I wrote him a letter and placed photos of our family with him.
I know it isn’t for everyone… seeing their loved one that way… but I found it comforting being able to spend a few last moments with my dad… to talk to him and just sit with him. I know he was cared for while he was there and he looked so smart and peaceful…as though he were sleeping.:blue_heart:
I hope you have support around you at home and you are never alone on here if you want to talk. Sending love and strength :heart:


@Beekind16 - Hello, It’s really very difficult and unbearable to see the our parents sufferings, this is the situation where we feel we are helpless and not able to do anything other than providing best care n prayers, but I would say no matter what let’s be with our parents till the end with same love and acceptance… I am also in somehow similar situation, my mom is cancer last stage,she has few months to a year to live , so it’s very painful to see their sufferings and yet that fear also at times hunt us… thinking like what gonna happen next… but that fear will create anxiety within us.

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