ALS/MND at late stage

[etikhomolov]

People who are not familiar with the details of ALS view a person with ALS as doomed but who can still fill his life (with help from Health Care System) with normal human activities including working on the computer, watching TV, and participating in forums and groups interesting to him. It is true at the early stages of ALS. The majority of ALS patients die because of various forms of respiratory failure not reaching the later stage of ALS. But if they reach my current stage, they enter a completely new world. Now, when almost all physical capabilities of the body are gone they find that Health Care System is not capable of properly supporting such seriously ill people. I describe in my novella how the world looks in the eyes of persons with ALS at the later stage of the disease, including brutally frank discussions about problems (and some solutions). Novella is published on the following free web site:

https://www.booksie.com/634398-liste...the-black-hole

Please, have a look. I will be happy to hear your comments and discussions.

[Banned]

Yes, I am in the same position. Breathing is just about possible with no intervention and I have been left to rot as I seem fit. I am an avid IT geek with a company, so it was a no-brainer for me to develop a comprehensive care app. 3 years on and I'm getting there and it gives me excitement and hope!

[Mary C]

Having read some of the article over breakfast whilst in hospital it filled me with horror.I understand that end stage MND is not pleasant but what came through was how misunderstood and helpless the author felt to the point of being ignored by nurses etc,

I can’t bear to read it all today...The fact that is somebodies personal account saddens me and fills me with fear if I look to far ahead.We are all different but can imagine if I had read this article after diagnosis I would have sunk into depression!,

I need to resume to living one day at a time and count my blessings today.
Best wishes
Mary

[LindaB]

Mary C as someone fairly recently diagnosed & to try and preserve some of my emotional well being I cannot read harrowing personal accounts. Yes this is me putting my head in the sand but it's a choice for my self preservation. I'm not dismissing, and never would I, people's personal stories but I'm choosing to cling to the moment rather than look too far into the future.
I think since joining this forum the benefits to me are reading posts from the MND community that are frank whilst also fairly positive in spite of the horrendous physical toll.
So yes I choose the "...one day at a time and count my blessings today" too Mary.
✊

[denise]

Hi everyone

I've had a bit of a read. I know it's not me but my husband that has ALS/mnd. Can I read it? Do I want to read it? Does it help us in anyway? I honestly don't know. I'm petrified but do I want to read the end without just going on the journey. Anything could happen on the way. It's different for everyone after all. Perhaps I'm sticking both our heads in the sand but at least we can get through each day and enjoy it the best we can.

this might just help, those that don't have this disease, understand what is going on. Perhaps it will help with funding research or healthcare. I don't know. I guess stories need to be told and avoiding the elephant in the room doesn't help anyone.

I might have another look but I know for sure my husband will not want to know. One day at a time.

love and hugs Denise xxx

[EvelynMW]

etikhomolov I have read seveal pages of your harrowing account , and cannot help but trust that the UK would do mch better. The fact that Canada is so poor, though, is not encouraging. I guess my mum was very lucky, she was at home for all bar her last 2 weeks of life. neighbours called round to visit, i came home in m work lunchtimes (took a job very close to home) to move her, and feed her. Near the end it was boiled eggs, mashed potato - things that required no chewing. She was as happy as i had ever seen her, loved to be the centre of attention, and was looking forward to living a long time. My father still has a froxen shoulder from lifting her onto a commode and liftting her into bed. Here, i would probably go for a live-in carer if things got that bad, and having worked in home care,i know a reasonable amount about getting that type of support.

Currently, i need a very small amount of help. I have been diagnosed through having a known genetic pre-disposition, and am already 3 years in. I don't think about my future ailments at all, and only tink about the things i want to do ver the next few years irrespective of my condition.

I think you are amazing, keeping going under such appalling conditions. I trust the MND monitors will read and spread your experience to teach more of this countries medical profession.

I see in the comments that people both share your eperience, and want to spread the word. I can only trust that somehow, the care given to you, is prevented from ever being given again. Well done for your clear explanations, and detailed notes.

[Ellie]

Mary C EvelynMW Please don't think that author's personal experience is universal, and I am not diminishing it in any way.

Mary, as you and I know how compassionate and holistic the hospice movement and palliative care services are on these islands, we really don't face into late or end stage ALS/MND alone, but involving these sevices is not obligatory.

"Late stage" in ALS/MND can go on for a while and, as the author writes, is enhanced by technology. I am late stage in my ALS and yes, technology enhances my life, as do my family, carers and friends (forum friends included!)

Notwithstanding ICU or HDU hospital admissions, the vast majority of us will spend the vast majority of time living at home, being cared for by paid and unpaid carers. Many of us will spend our last days in a hospice or, if it's our wish to die at home, we'll have palliative care brought to us.

Love Ellie.

[Mary C]

To EvelynMW
I have to say like your mom I still feel very supported by family, friends, hospice and my Catholic faith.
My Hope is to spend my time at home until this life passes being cared for by my husband professionals,family and close friends.(Also lucky enough to have a relative who will garden, clean, cook and engage in personal care)She is happy to learn about NIV and RIG and has looked at the predictable communication app with me in case needed.

Reading that article this morning threw me into a different mood as I sit in hospital waiting for RIG procedure.I am fortunate that this ward seem enlightened by many of the staff about MND with a manager that encourages spouses or carer to stay over and in my case I was delighted that my husband thought was a great idea and carries on with the personal care routine we have at home in hospital.

The author of this article clearly outlined his experience which thank goodness is not mine .I acknowledge that this was written by a person more advanced in disease than myself yet.
I really did shed a few tears for the author and recipient of such awful care and maybe selfishly I related it to myself In what could happen.

I was able to reframe it in my mind to return to my way of taking to one day at a time looking at the blessings I feel I have.
So after a range of emotions and inner turmoil a shed load of tears and lots of prayers peace is restored after a few hours.
One day at a time...may this authors personal experience never happen to other people living with MND.

Best wishes to you all
Mary

[Lynne K]

I’ve read all of your comments about the care or rather lack of it at end stages. But I’m not going to read the article. I don’t think that it’d be good for me.

If that was the use care offered in Canada then something needs to changes there. Lynne X

[Suefromwakey]

I'm with you Lynne, even though I am not the patient here, there's only so much forward thinking I can possibly take, Denise dig another hole in the sand for me please

[Olivia H]

This is both heart-rending and shockingly unacceptable, perhaps more so in a country like Canada. I always feel the measure of humanity and 'society' is how we take account of those who are less able, old, young, weaker, ill...if one person feels let down and abandoned, then that is a failure. If professionals who work with those with mnd fail to truly understand these challenges, then all the knowledge in the world means nothing without compassion and care. Everyone is right - it is your life, there is no formula, live whatever way best sits well with you, and cherish the fact so many of us do have some good and caring people in our lives. People don't expect cancer sufferers to wear a 'warriors hat' or have to give account of every stage of their illness..they are ill, just as are we, its not some prosaic 'mnd journey' that only people who dont have mnd seem to think is a suitable description, it is just a lousy, rubbish illness. nd yet so many people here remain upbeat, and live their lives within the limitations they have, often with humour and insight. Someone said to me once, why do you bury your head in the sand, you have a terminal illness! Yes I said, as do you, unless you've discovered the secret of immortality. We are over-scrutinized and under-helped, the only way to make us all smile is a cure. Failing that, realistic supports as and when we want and need them, and in our terms.

[DJW]

Fighting MND is like farting against thunder, if you have it Game Over! Your motor neurones will die and your muscles will stop working. Intentionally or not you will suffer a detriment under the the care of another human. So I still refuse NIV and PEG!

[matthew55]

There's a very thin line between Denial and Pessimism in my opinion

[denise]

Think most carers do a brilliant job and do what we can and as best as we can. Please don't tar us with the same brush. 😐

[Ellie]

denise 👍👍