Being with mum when she goes?

[tomissmymum]

My family asked me a couple of days ago if I want to be there .

Mum has a rare form of dementia, she isn’t doing great at all, has periods where things look awful then she picks up again but she’s very rapidly deteriorating . She’s late 50s, I’m 31 .

I live quite a distance away so to get to mum if it was urgent could be difficult, 3-4 hours travel .

My family asked if I would want to be at her beside and I don’t know . My mental health isn’t great just now at all - feeling properly ill with it as opposed to just a bit low/anxious . I lost my granny v suddenly this summer too which isn’t helping at all .

I don’t know if I want to be with my mum . I couldn’t cope visiting her at all, that was 3 weeks ago and I’ve had horrendous difficulty since - horrible horrible nightmares most nights.

At 13 I remember being taken to sit with my great granny when she died - we sat there for two hours ‘to say goodbye’ - she died 12 hours later . My lasting memory of great granny is not of her being well but of her unconscious in her bed dying .I don’t want to picture my mum in the same way in twenty years and I don’t know what to do . Even the thought just now has got me crying again . My GP said earlier this week something about ‘damage limitation’ and that she would strongly advise I don’t, as have a couple of friends, but I don’t want to let my mum down any more than I already have by not visiting her frequently (other family do, they’re in every 2-3 days) . I don’t know what to do .

Friend said maybe an idea would be to travel to family in that scenario - they live only 10 miles from mum - and stay at theirs and if I did want to go then the option is left open to me, I’m not sure if that’s the answer? I worry if I do I’ll never get over it and f I don’t I’ll never stop feeling guilty!

I’m so sorry that your Mum is so unwell. Are you her only child? If you have siblings, do they need your support?
if there is someone else that can be there with her then I don’t think you need to feel guilty. It’s a very personal choice and I’m sure your Mum, if she were well, wouldn’t expect it.
Take your GP’s advice and be kind to yourself
x

Hi OP, firstly, I am so sorry you are in this situation. There really is no right answer here. My dad died last November of a cardiac arrest. He was on life support in the hospital for two days before they turned the machine off. I opted to be there. One of my sisters didn't want to be but then changed her mind and raced in. Dh also lost his dad after an almost decade long battle with dementia a few months ago. Dh hated visiting him, they had worked together and of all the kids dh had been the blue eyed boy in his dad's eyes. Dh kept vigil along with many others around his bedside but his younger sister didn't. Some of the other in laws went but I couldn't so soon after my dad so I stayed with his sister. I have no regrets about being there when my dad died and dh has none about being with his. Similarly, dh's sister has zero regrets about not being there but instead with me and some of the grandkids who are teens not toddlers. Some people are there and regret it, some don't. Similarly some people regret not being there and others don't. I'm afraid there's nothing I can say or do to advise you other than to think about it and also some alternatives like being with a friend or family member who isn't close enough to be there for support. If you were to travel close by then you could do what my sister did and race in if you change your mind. Wishing you lots of strength for the days ahead x

This is your choice. Personally, I think sitting by someone's bed waiting for them to die is barbaric, so I sincerely hope nobody ever does that with me and that I am allowed to die peacefully AND alone. Lots of other people think differently.

So you just do whatever works for you, and don't let others influence you either way.

If you don't go, don't feel guilty at all about it. You need to make the right decision for you at the time and don't torture yourself about that afterwards.
Fwiw when my mum died, I was with her, my brother was not. He wishes he had been and I wish I hadn't.

It is such a hard decision. My OH was totally paranoid and deluded during the latter stages of his illness - we could get little sense out of him - he thought we were trying to kill him - but suddenly, out of the blue he had several hours of lucidity and we were all able to talk with him, play his favourite music and he told us he loved us all. We were gobsmacked as we had been dealing with someone who was totally out of touch with reality for months. Shortly after he died.

So it is hard to know how much might be achieved by you being with her, at such great cost to your mental well-being, if you are unable to be sure that this will help her in any way, or that she will even know you are there. Above all you should not do it to keep the rest of the family happy - it must be your decision based on what is right for you and your future health. Watching someone die is of course a painful experience.

Remember too what you might feel if the situation were reversed - most of us as mothers want the best for our children and in her previous state she would not have wanted you to suffer on her behalf. Being there or not is not for her, it is for you and you have that impossible decision as you are trying to predict how you might feel in the future, which is very hard to do.

How do you get on with your family? Do they understand the extent and seriousness of your mental health problems? Are they likely to be judgmental towards you or understanding? If they are sympathetic then the idea of staying with them near to where your mother is makes sense. You will have support around you and will be able to make a decision that can be acted on fairly quickly if you decide to see her, as you will be nearby.

I am so sorry that you are having to deal with this while you are feeling so unwell yourself.

I wasn't with my dad when he died and I wouldn't want to be with my mum. She won't know the difference by the sounds of it so it makes no sense but to do what you want to do. If it's too much for you then i'm sure she would rather you looked afetr your mental health anyway.

My darling mum died of dementia last Saturday, she had been on end of life for a week. We sat with her most days and I hated leaving the care home but the staff were wonderful and promised me they would call when she got near the end. It was a very gruelling week watching her suffer and struggle to breath, I agree with the previous post who said it's barbaric. I firmly believe that when someone is that close to the end they should be helped on their way and allowed to die peacefully with dignity.

Mum died at 3.40am so there wouldn't have been anyone there anyway but I certainly beat myself up that she died alone as I had hoped to be with her. I saw her shortly afterwards and said goodbye, it was serene and rather beautiful.

Sometimes loved ones choose to die alone and I take comfort in this when I'm feeling guilty.

I’m really sorry for your loss.

I lost my dad ten days ago. He actually sent me away, told me he was feeling better- literally his last words to me were to bugger off home! Apparently he told the nurses to leave him alone too. He wanted peace. I had spent so much of his last week with him. I found it absolutely traumatic. Weirdly I’ve been much calmer and grounded since he died, organising the funeral etc hasn’t been as tough as I’d expected. I’m sure it will catch me up, but when m just glad I don’t have to watch him suffer and waste away anymore.

Sorry you are going through this Op.

having been through something similar at the beginning of the year it is important to make decisions that protect you from emotional trauma but that also don’t leave you with regrets.

with my situation I decided I didn’t want to be in the room but would be in the house. I planned to say my goodbyes and then stay around to support my family. I didn’t want that final lasting memory of my mum. Plus I was convinced my mum would still feel my energy nearby even if I wasn’t in the same room. my sister on the other hand wouldn’t have contemplated for a moment not being there. Neither of us was right or wrong in this - we both decided what we could cope with. There is no right or wrong with these things so I wish you strength during this time.

Barbaric? What a bizarre attitude.

I ended up driving 2 hours in a mad panic to be with my mum and made it with 20 mins to spare. I’m so glad I did, my sister and I held her hand and chatted quietly. She had fought so, so hard and we said to let go and be with our dad who’d died 30 years ago. To be honest I think it was more for us than her that we wanted to be there, and after she died we spent another half hour with her which also helped.

If you don’t feel able to be with her then that’s absolutely fine, but I do think you need to be 100% sure of your decision. Wishing you well at such a difficult time.

I was with my DM when she died. I am fine with it. I think of her often, but as she was when she was alive, and the things she said.
However, other people are not like that. I knew my DSis would not be able to cope with being there, and she lived too far away.
I always said to my siblings, that I wanted to be called if and when she died, even if the middle of the night, and I would then be in a position to make the decision. As it was, I was the one who lived the nearest, anyway.
If your mental health will suffer, then please do not think you have to be there to please other people.

My mum passed away 7 weeks ago, I was the only one with her. Everyone else had gone home to sleep at 10pm as we thought she had a while. She passed at 2.45am. My brother didn't want to be there anyway so he'd said his goodbyes. I won't lie, it's very traumatic watching someone pass and thankfully my mum passed peacefully. You have to do what's best for you and your family to be honest.

Firstly, I am so sorry you are going through this. I know how much of a difficult time it must be for you right now.

I agree, there is no right or wrong answer here. I honestly think you should do what you feel is best for you, what you are comfortable with and what you think will be best for your own MH. They way I see it is, I wouldn't want my dd to ever feel guilty for not being with me or for not wanting to watch me die. I would rather she done what she felt was right for her and protected her own MH.

I don't know if this will help at all but my Dad died a few weeks ago. He had been ill for a couple of years. For those couple of years I dreaded being the one who would find him. We were told recently that he was end of life. We all spent alot of time with him. A few hours before he died, I spent the night there, not expecting him to die that night. I was the last to see him, give him a drink, a kiss etc and I went to sleep for a few hours. When I woke, he was gone. I will be honest, it was awful, but only because I didn't expect it. However, in saying that, I really do love those last few hours that I had with him amd I am so glad I spent that time with him. I will also be honest in saying I am having regular nightmares, however, my nightmares don't make me regret being there. I truly am glad I was there and if anything I regret that I went to sleep and will always wish I was there holding his hand as he passed.
Just to add to this, being with him after he passed brought me and my family alot of comfort, i personally didn't find it scary (I thought I would of) and if anything it was peaceful.

Please do what you feel is right for you. I'm sure that's what your Mum would want. Please take care of yourself and reach out to family & friends for support.

OP I'm so sorry you are going through this.

The thing is, it's impossible to predict death with any certainty. I went for my mother's last few hours and was there 3 weeks.
She wanted to die at home and we did our best to grant that for her but I don't think my mental health will ever recover.
My mum is at peace now but my sister and I still live with a sense of failure because we weren't there for her last breath.

Everyone has different strengths, just because other family visit more than you, does not mean that they love her more, just that they have the strength at this particular time to cope with that.

My advice would be to listen to your GP and do whatever you have to, to protect yourself and your own mental health.

@tomissmymum I'm so sorry op. I was with my mum when she died. She died very peacefully and it's been a source of profound comfort to me since. I probably won't be with my Dad because he's in a care home and I will have to make my peace with that when the time comes. You must do what's right for you - that's what your mum would have wanted.

My situation was this. I had just landed in USA and my DF had been taken to hospital as we weee in the air. He had a massive stroke.
We got flights home and I went straight to the hospital from the airport and I stayed with him until he died 10 days later.
My mum came to visit each day but with her dementia, she wanted to go downstairs to Costa and M&S to take something tasty back to the care home for tea.

I didn’t want dad to be alone, however when I went to the loo or for a shower. I told him on the off chance that he wanted to pass alone.

As it was. My brother, my husband and I were with him and it was incredible sudden yet peaceful.

Im so grateful that I could spend his last days with him and looking back, it was a special time that I wouldn’t have missed for the world.

However. We are all different so do what YOU want and don’t be pressured into what you don’t want to do.

I sat with my Mum. Her worst fear was dying alone. That said, she died in the 10 minutes I left to pop to the loo and get something to eat. It’s a very individual choice.