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How best to support Mum and family

4 replies

MistressofMuppets · 06/01/2023 13:31

My uncle was diagnosed with MND lmtwo weeks ago. This comes after a misdiagnosis of something a lot less severe and Mum has just been told that the doctors say there's nothing else they can do and the end is imminent.

Bit of background here, Mum was one of 8, they're all very close in the seeing each other weekly, daily phone calls, way. The entire fairly were rocked in 2019 when my youngest uncle had a major heart attack and died in his early 60s Totally unexpected and everyone was devastated.

We then lost my beloved Dad in 2020, but he'd been ill for a long time, so we had a bit more time to process it.

I'm honestly worried about how Mum, (and the extended family) are going to cope with my uncle passing. He went downhill very fast and was always a very active man, the family rock, hugely practical and the glue who held everyone together. The misdiagnosis gave them a sense of hope that has been shattered and his decline has been rapid. Went in to hospital for tests and a OT review, now he won't be coming out.

I'm getting multiple messages a day from Mum raging against the unfairness of it, my aunts are in tears, my remaining uncle (the eldest) is in a state of shock that both his younger brothers will have gone before him. My cousin (uncle's daughter) is basically catatonic, refusing to talk to anyone and in a severe state of depression.

I honestly don't know what to do or say. I feel so useless, so all I can do is listen and provide practical things like shopping or making tea.

Is there anything I can practically do to help any of them at this point?
I have some MH issues and tend towards practicality, then do my grieving privately, but don't want them to think I don't cafe.

OP posts:
ConfusedGin · 06/01/2023 13:39

Firstly, I'm so sorry. My aunt had MND and it's the worst condition I have ever witnessed. My thoughts are with you and the family.

I also err to practicality and private grief. Are there any things that you can do to make day to day life easier at this time - driving them to the hospital, meals, collecting children. Allowing them to focus time on being together and with your uncle.

If he's able, could you record him talking about his life and hopes for the family - there's a lot of history lost when someone dies and with MND in particular, the loss of someone's voice and humour can be hard so capture it if you can.

MNDA are really helpful in their resources too.

embod · 08/01/2023 21:30

Firstly I’m so sorry for what’s happened with your uncle. MND is such a cruel disease. I knew very little about it until my darling father was diagnosed with it 3 years ago.

Sadly my father is currently in hospice for end of life care for another condition and in some respects, as a family, there is some relief he hasn’t had to endure the worse of the MND.

At present focus on the next step and don’t look too far ahead. I understand your mum’s anger and frustration over the mid-diagnosis etc but now is not the time for that. Try to stay in the present. I think it’s a really good idea of previous poster to try and record some memories from your uncle. One thing my dad has done is write a lot of his memories, stories and histories down. He’s had the luxury of time to do that and I know your uncle does not have that but voice notes provide a wonderful opportunity at this point. Equally encourage your mum and other family members to reflect on the happy times and funny memories, and to share them. This is giving my family much comfort at present and we recognise how lucky we are to have those memories.

Also reach out to support networks. The MND association has a lot to offer. And if you’re on Twitter there’s a whole support network on offer.

sending your family much love from mine ❤️

MistressofMuppets · 11/01/2023 17:20

Thank you both so much. Sorry I haven't been back to the thread. The tips are great and I thank you both from the bottom of my heart.

We've got some voice recordings done while he's still able, which isnt much now but will be precious in future.

And thanks for the advice re support networks.
It's just a waiting game now. The hospital are great in that people can visit whenever, so he's not alone. And I've encouraged the wider family to talk about the past both to him and to each other.

It's such a nasty, cruel thing. Just so hard to watch

OP posts:
doggymama · 24/01/2023 10:33

I'm so sorry for what you are going through. My husband died 3 weeks ago from MND. I found dealing with the practicalities helped me to stay strong. Its only since he has passed that I am an emotional wreck. It is a very cruel disease and one I found we never came to terms with. Supporting your family just by being there and listening will help. Also spend as much time with your uncle as you can, reminiscing over good memories will help keep your uncles spirits up and yours. You will look back over this time fondly remembering the precious moments you have shared. I wish you, your family and your uncle the strength to face what will come. Sending love and a hug xx

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