When A Parent Is Diagnosed With A Degenerative Disease...

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  • INSOMANiAC 9 Nov 2017 16:29:49 4,466 posts
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    So my mother just got diagnosed with Motor Neuron Disease. Not good. I don't know what to say or do. She's in her early 60's and started to get vocal problems and had a load of tests. I'm worried and scared for her, and if I'm totally honest on how I will cope as well... How did other people deal with this shit?
  • FilthyAnimal 9 Nov 2017 16:35:52 163 posts
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    I'm sorry to hear about your bad news.

    Based on experience with MS, I guess the only advice that can be given when it comes to degenerative neurological diseases is "one day at a time". Don't try and plan ahead because you don't know how fast it will progress and which order things will happen in.
  • mecha-DR 9 Nov 2017 19:15:58 401 posts
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    Im not sure I can give any positive advice other than try and hold it together for their sake, in the hope thats the best you can do for them :( Sadly life can be vile and unfair and the end can come as some relief from pain and suffering.
  • mal 9 Nov 2017 19:40:15 28,492 posts
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    Do you live in the same town as your ma? When my grandma got disgnosed with dementia I was living in one corner of the country, my folks were at the opposite corner, and my grandma was in the middle.

    Luckily the dementia hasn't affected her personality so she hasn't got nasty the way some do, although to begin with we set her up with a cleaner, who she fell out with. When we shifted up to carers who'd feed her once or twice a day, she would take the huff with one of two of those as well, but those were slightly better paid to put up with that sort of crap. By the time she needed three carers a day we instead shifted her up to live near my folks, so they can see her in person most days, rather than driving down once every month.

    We also had an amazing neighbour who would see her at least every other night by the end of her time there. That and skype so they could at least check on her every night, at least while she was able to turn on the computer.

    No idea how much of that is transferable to MND - probably not much as with dementia it was her mind that was going, while her body remained strong, at least until she got so confused that she started living on cup-a-soups and turning down cooked (well, microwaved) meals.
  • INSOMANiAC 9 Nov 2017 20:36:26 4,466 posts
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    @mal My biggest fear was always she'd get dementia, at least, I thought it was, that seems like it would be the better alternative than what she is going to go through with this MND shit, mind still in tact but entire body giving up. I live with her at the moment, she's going to need full time care. I'm determined not to let it sneak up on us but the thought of discussing voice boxes and wheelchairs seems ridiculous as shes walking about large as life. She only got diagnosed today and refused to hear any of the details of it, she knows it bad but I don't think she has any idea of just how bad. She's understandably in shock and denial. It still feel like it isn't happening.
  • INSOMANiAC 9 Nov 2017 20:38:05 4,466 posts
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    @FilthyAnimal True but then, I don't want to be caught out, unprepared, such as getting her voice recorded etc. I don't want to rush her or upset her but at the same time I don't want to sit on my arse and let this terrible shit take her down while I do nothing.
  • mecha-DR 10 Nov 2017 20:16:48 401 posts
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    Sorry I sound pretty bleak, but it was very not fun trying to rescue some quality of life for mum suffering from lung cancer, and miserably failing. But not all conditions are the same. Id research her condition as much as possible and not divulge it unless she asks. Also there is financial support in carers allowance if you need it.
  • mal 11 Nov 2017 01:08:32 28,492 posts
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    Yeah, reading up on MND (or ALS as it's also known) it sounds like she has less time than my gran's had since her diagnosis. But then reading up on it on wikipedia, my gran should have died years ago given what she supposedly has. She's still rocking on, although some days are better than others still.

    That doesn't sound like the way MND goes. Today is at best as good as yesterday and no better there, as far as I've made out. I don't know how quickly you'd need to get breathing equipment, but I guess that might be something worth mentioning to the doctors when you next go.
  • DFawkes Friendliest Forumite, 2016 11 Nov 2017 02:04:44 31,479 posts
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    The main piece of advice I have is there is a lot of support out there, so don't be shy about reaching out to charities like Marie Curie or MND Association quickly. Certain forms of support they provide can take time to put in place, so please start reaching out as soon as you can as it really can help a great deal. I know it's difficult to start reaching out as that can make it all feel real, but it really is for the best.
  • Some_Goats 11 Nov 2017 08:09:22 46 posts
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    It's hard, being the supporting one. Especially when the 'other' is someone like your mum, where the dynamic between you used to be quite different, some years ago.

    I don't have a load of advice but I've been through similar and I can sympathise. The advice above about reaching out sounds like the best. Sharing your pain really does help.

    Sounds like a very tough situation; balancing things like acceptance, reality, dignity, anger, sadness etc all in one situation.
  • CalamityJames 11 Nov 2017 08:34:54 160 posts
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    I've lost both my parents to dementia in the last couple of years, it's been really rough. Dad passed earlier this year, and Mum is now in a care home.

    Two bits of advice I'd give: First, get as much clarity on your mother's wishes while she's able to do so (though my understanding is that MND doesn't affect cognition, it's still a good idea to do this now, as you don't know what's around the corner).

    Secondly, and more importantly, don't be a martyr. There's a point at which the care you're able to provide as a non-professional isn't enough, and though you might feel that you have a moral obligation to persist, it ends up being worse for everyone. You need to have a clear idea in your mind of what that point looks like. You can't care for another person if you're an emotional/physical/psychological wreck yourself.
  • INSOMANiAC 11 Nov 2017 10:06:30 4,466 posts
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    Thanks for all the advice, she's still in total denial at the moement, as is my father, they don't want to hear the facts. All they know is that 'it's bad' and my mum is clinging on to the hope that when she goes back for them to tell her what type that it's the 'manageable' type. Her vision of manageable and the truth are very very far removed. Of course, I haven't told her any of this, she's waiting on another doctors appointment but it's so hard to think time is ticking away very quickly and there's nothing really I can do at the moment. The thought that her body is just going to give up on her but her mind will be trapped is fucking terrifying and it just doesn't seem real. Someone who is walking about and reasonably normal is destined to be in this state and there's no cure or way to really slow it down. Every day is like a waking nightmare at the moment.

    Edited by INSOMANiAC at 10:07:48 11-11-2017
  • j66 11 Nov 2017 11:48:01 5,988 posts
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    Just about to try Lion's Mane mushroom capsules for help with partner's MS. Supposedly helps with myelin repair and such. Worth a bit of research, pretty cheap, maybe worth evaluating.

    https://www.braintropic.com/nootropics/lions-mane-mushroom/
  • DFawkes Friendliest Forumite, 2016 11 Nov 2017 12:34:17 31,479 posts
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    That won't help Insomniac at all, unfortunately. MND doesn't have the same root cause.
  • j66 11 Nov 2017 14:35:20 5,988 posts
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    May help with dementia though - for other readers.
  • DFawkes Friendliest Forumite, 2016 11 Nov 2017 14:44:56 31,479 posts
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    Indeed it might.

    Edited by DFawkes at 14:46:38 11-11-2017
  • mal 11 Nov 2017 19:05:02 28,492 posts
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    MS isn't a form of dementia though is it? There are lots of different diseases that get lumped under the defintion 'dementia' but I didn't think MS was one of them.

    Perfect fit for this thread though, I'd have thought, although people with MS only tend to die five to ten years earlier than average.
  • H1ggyLTD 11 Nov 2017 19:07:01 7,708 posts
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    My uncle died from it a couple of years ago.

    It was a horrific, prolonged end.


    Spend as much time with her as you can.
  • RyanDS 11 Nov 2017 19:10:38 11,660 posts
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    My mom went through a long scare when we thought it was mnd. Turned out to be shitty but not as shit charcot Marie tooth syndrome which is similar but not as bad.  15 years later and my mom is still here, but quite debilitated, all i can say is honestly make the most of what you can.

    Stuff like this shows you how important every moment is.
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