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Just Why

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  • GaryM
    Welcome to the forum TinyDancer. What a difficult position to be in. Even if your mum doesn't want to engage you'll get lots of support here, as you probably know if you've read some of the threads. If you read some of Denise's posts you'll see that her husband doesn't want to discuss his condition either. I'm sure others will offer helpful advice over the next few days. Some people only come on the forum every few days.

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  • TinyDancer
    started a topic Just Why

    Just Why

    My Mum (in her 70s) was diagnosed with bulbar onset MND in July 2020. She could hardly speak by then and although slurred speech began 7 months prior, she hadn't wanted to go to the Dr. She said she didn't want to know what it was. Since diagnosis she hasn't engaged with the multi disciplinary team, GP, SLT, Respiratory team, Dietician. She doesn't want to. Says communicating with them makes her stressed and unhappy and she'd rather I didn't speak to them on her behalf. She doesn't want to have a PEG or NIV.

    She is continuing her life in the same way as before the diagnosis. Driving, gardening, keeping her house. She will only accept help from me or my sister if forced to (to make a phone call) but she is loathe to ask for it. No limb involvement yet that I can tell but I know the diagnosis was based on nerve tests too and can't be wrong.

    As her bulbar muscles weakened she changed the consistency of what she eats but won't talk about it and cut off conversations I used to start about thickeners etc. She stopped drinking liquids and eating in front of me around christmas. Weight wise, she looks (just about) ok but it's hard to tell.

    I respect all her decisions about refusing treatment but I am concerned that she doesn't fully understand the benefits of the treatments for improving quality of life and preventing a crisis (I'm most worried about her choking)

    Because she doesn't engage with professionals, my sister and I tried to explain very gently about a few things e.g. the implication of not having the PEG but it felt cruel. It's like her level of denial is the way she copes. At first I wondered if she would change further down the line after the initial shock were off. But she's become more extreme. The MND team said it's the first time they'd ever had anyone refuse all contact from day 1.

    Whatever I'm going through, I know its 1000 times worse for her. I wish I could take away some of her pain. I don't know what to do apart from just go with it. Seeing her grandchildren is the only thing I've seen that makes her happy lately so she does see them despite Covid. I know that sounds bad but we do take Covid seriously and they are off school. I've heard about FTD. Not sure if it applies but maybe as her personality seems different now. She's a completely different person to be honest but those changes started gradually 6/7 years ago so no idea if that's even MND related. No memory problems or anything.

    I don't think there's a question or clear point to my post. But I'd welcome any comments, insights or questions. And I'd like to send warmth, strength and incredible respect to everyone in this group. I'm one of those people who has been lurking and reading others posts for a while and it must be vaguely annoying for those who post. So here we are.