I lost my mum to motor neurons disease, she also was diagnosed with possible FTD - front temporal lobe dementia but that was never confirmed due to the limited time she had left, my mum was 58 years old, I myself was 26 at the time unfortunately my mum had been displaying signs that she was unwell for about a year and a bit prior to her passing and we had been trying to get answers from her gp time and time again and never did we get any answers or correct solutions it was things like you have a throat infections or things like your depressed, we then pressed really hard on the gp as my mum had experienced extreme weight loss in a matter of months her speech had significantly changed and wasn’t clearing up with any medications, finally she was referred to the hospital when we found out she possibly had motor neurons disease my mind was blown it felt like it came out of left field, once it was confirmed and we were informed of the possibility of the FTD - but had to be confirmed later on as the mnd symptoms were more pressing she was told she maybe had 2 years! My mum remained in hospital for about 6 weeks we were by her side the whole time me, my sisters and brother took shifts being with her everyday and staying over as my mum was quite fearful as she was unwell and newly diagnosed and never wanted to be alone, anything she wanted we did and we were there for her beck and call. Things just kept getting worse what we had been told about two years turned into 1 year, at this point the pandemic had started and hospitals started changing everything and we managed to get her out of hospital just as they went into lockdown her final assesment gave us an indication we were more in months rather than a year, at home we took care of her working shifts so that she had full time care from us all, we ultimately became her palliative care with the assistance of checks ins with mnd nurse and local regional nurse this was absolutely fine though with us the idea of her being locked up in hospital alone was something of a nightmare and certainly she didn’t want that. I dunno why I’m explaining this all but basically we found out she had motor’s neurons disease and from diagnosis confirmed to when she passed it 3 and bit months, unfortunately it had been explained to us she basically had an aggressive form of it. It was all so very fast and things were changing all the time! I am so grateful we got to be with her and feel so lucky she got to be at home and we cared for her, whilst they were some of the most difficult months of my life I was so happy to be looking after her and making some final last memories no matter how scary the whole thing felt. We were all around her in those final hours all her kids, this is where I struggled the most saying goodbye, everything culminated to this point this was the thing I never wanted to ever happen and I kept saying to my brother and sisters before her final days, I said ‘I don’t think I can do this’ however I did I was there for my mum I held her hand I told her I loved her! I feel like part of my life has been ripped from me, we still had so much to see and do, she was an amazing mother i couldn’t have asked for a better mum she was the most amazing caring person I knew, we use to laugh so much she was my best friend I pictured me and my mum way in the future, she wasnt gonna go into a care home when she got to that age she was going to be with me and I would have been older and we would have made so many more memories but none of that gets to happen now, but i suppose that’s life, like many us here have learnt this hard lesson. Two years on alot of the grief process I have been working through since she passed but after she passed I developed really bad anxiety it didn’t help that when she passed basically a day later I got ill myself I got a nasty infection I think my immune system was ruined from running on adrenaline so much. So I was experiencing feeling physically unwell and going though the process of greif at the same time I feel like over the two years I have really allowed myself to process thr greif but I have been left with health related anxiety I think its a mixture of having had to research so much about mnd at the time so I could understand and support my mum, I read about palliative care and end of life signs ect. In the process also for me personally getting unwell after and then also it hangs over my head that what if I develop mnd or ftd I’m 28 now and still struggling with this anxiety I think I have exhausted my GP with check ups and now I’m nervous to even bother them because I don’t want to be a pain in the ass to them I was referred for mental health assessment and was given an app to use it helped a little but still struggling from time to time i paid for hypnotherapy where I live in Scotland it’s hard to get talking therapies on the NHS and I’m thinking of saving up some money again to pay private for help again maybe CBT therapy I think the waiting list for NHS taking therapies in Scotland is like a year or more long. I suppose I’m sharing my story and struggles as the process of sharing does help and want to know if anyone out there struggles with health related anxiety after a death of a parent or a loved one, how you coped and if you have gotten over it, its so difficult because the one person who I could talk to who some how magically made all my worries go away has gone, I’m on a journey of doing it myself with the support of my family but sometimes you feel like you dont want to bother them about it all, has anyone experienced what is basically a sudden loss then been overcome with the most intoxicating anxiety obviously amongst all the other greif but anxiety really sticking after much of the greif process has been worked through?
What a journey you and your family had to go through but your mum is soo lucky to have such loving and caring children. I’m hoping you are coping well with the grief losing a mum is hard like you say she’s your best friend and half of your actual being.
The anxiety can be managed if you can afford to get private therapy definitely do it. NHS waiting lists for mental health in Scotland are awful I waited over a year for trauma therapy after my mums passing although it slows a little I feel it was a little too late I had over a years worth of ptsd symptoms that now stay with me forever. Remember though anxiety is all about the what if’s keep re-assuring yourself because you know it’s your mind but also be easy on yourself. You’ve been through one of the worst things in life you’ll get through the anxiety love. And try stay away from Dr Google he will just add fuel to the fire. Do not let your GP fob you off if they don’t want to deal with you then demand a proper referral to mental health team. Take care of yourself x