Just Why

[TinyDancer]

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.

[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.

[matthew55]

My best and only true friend died from alchoholism but in his last years he was just like your mum. Sadly we can't make the ones we love do anything unless they decide to do it themselves. It's no help but at least MND is mostly pain free. 😊x

[denise]

Hi tinydancer
yes your right it's a problem. You want to help but if they don't want it not a lot you can do. My husband was having symptoms 8-9 years ago but he wouldn't go to the doctor. But was is age related or mnd? I don't know. He was tired and forgetful. I thought dementia. Then he fell over. Then about 2 years ago we noticed his hands and arms started to shake/pulse. I managed to get him to doctor and a quick hospital appointment and a diagnosis. He's taking riluzol and after I arranged for him to have a peg fitted. He was so annoyed and upset I had to cancel it. I told our children and my daughter said "Well it's not all about him". He had 2nd thoughts and went through with it. I think its the whole doctor's thing he doesn't enjoy. It's a long journey, it's tiring and it's not a cure.
like your mum my husband loves to drive it makes him feel normal but yesterday he felt exhausted. He looked terrible and I was worried. It's his hands and arms that are the problem but I think its the exhaustion that's going to stop him doing things. I suggested we might get a wheelchair. You can imagine how that went down!
he never talks about his health. A doctor asked if we would like counselling. I said yes he said no. The doctor asked if he cried and he said no. He had physio for a while but he's not fussed. I warn him about covid but he looks at me as if to say well does it really matter. He just wants to take each day at a time. I'm more worried than him. He had 3 falls in one week but insists it's ok to go out 4am for a smoke when it's freezing, icy and slippery. I felt like locking him in.
I recall my mum in her 80's saying she was just waiting to die. I don't know perhaps as we get older we think well I'm going to go in the near future so let's just get on with it.
it's scary and upsetting but it's what they want. I've shouted, cursed and pleaded but basically I just have to go with what he wants. It's hard work for me but there's not much I can do. Could run away I suppose 😊
if getting you to post on the forum worked then great it worked. Just wish it was a nicer situation.
Denise xx

[Suefromwakey]

Tiny Dancer, -

I agree with Denise as my husband is pretty much the same........the MND booklet came through yesterday with Rob Burrows on the front cover - Rob is local to us and my husband is a life long rugby enthusiast...........so I thought this could instigate some response, so I read it and then passed it over to him.............not interested in the slightest.........didn't even look at it.........its now in the recycle bin,

I was hospitalised a couple of weeks back so I had to get my daughter to come in and see to him as he cant get out of bed on his own............how many times since (and before) have I said to get something organised for such events in the future.........not interested, not done anything,

Its annoying to say the least but you are not alone!

Sue

[Ellie]

Welcome to the Forum TinyDancer Sorry you find yourself in such an emotional dilemma. It must be so hard to deal with your beloved Mum's MND diagnosis, even without knowing her decisions re treatment and contact with medical professionals, your head (and heart) must be swimming...

You didn't say if she lives alone - that'd be my first comment as that would have the most impact on her daily life.

If she needs to make telephone contact with her bank or utility company, who ask to speak with the account holder for example, she may run into difficulties. And what if she needed to see a bank official, lawyer (or whomever) in person - rhetorical question but something to be aware of.

There are ways to keep her eating and drinking safely and for longer - maybe you could print it out and leave it for her to read on her own?

She may, with time, accept the need for some help, and a 'nice' community nurse or nurse from her local hospice might be more acceptable? Please don't freak at my mention of "hospice" - they are fantastic resources and help people with life-limiting conditions, in a non-judgemental way, full of understanding and empathy. They also support family members.

Here is the link to the 'Eating & Drinking Guide', maybe look for relavant pages to print for her which fit in with her wishes? https://www.mndassociation.org/app/u...de-2020-V1.pdf

Love Ellie.

[Deb]

Welcome to the forum tiny dancer,

I am sorry for your mums diagnosis.. it must be so hard for you too especially if she is unwilling to accept professional help or discuss things to make life easier.

I guess we are all different and it took me along time to accept help. For me there was really no choice as I was unable to walk but I kept googling things to find an alternative diagnosis.

My mum ( she hasn't MND ) is 90 and struggling to live in her home but she won't even discuss alternatives or having extra help in the home. Obviously I can't help her physically and she has refused to see people I have arranged to assess her needs. I respect her decisions but I know she isn't safe. Its really difficult !

Ellies idea of printing things off to leave for her to read in her own time is sound because I'm sure she must think of these things even if she doesn't want to talk about them.

Take care of yourself.
Love Debbie x

[GaryM]

My mum has terminal cancer and is in her late eighties. Her generation are all fiercely independent and reluctant to accept help. I find that if I suggest things that might help her, initially she won't have anything to do with it, after a few weeks she seems to come around to the idea. Wheelchair, commode and rollator she has now. She originally said there was no way she was having them in the house.

[Stonehengeman]

I am 81. Progressive Bulbar Palsy was diagnosed 3 years ago and I have lost my speech. I can still swallow but I am slow. My wife ensures that all items for me to eat are cut small. Meat is usually minced and veg chopped very small. Potato is mashed. Liquids ar thickened. I had a peg fitted nearly 18 months ago but have not used it except for daily flushing. I have started using it in the past fortnight for once a day using Fortisip a high energy drink (supplied in small plastic "bottles"). I find it very tedious and now I am drinking the Fortisip. I also eat 2 tubs of Forticreme daily. I have managed to put some weight back on, the dietitian was concerned that i had lost weight (about 7lbs). I am now back around 10 and a half stone where I have been for 30+ years. The Fortisip and Forticreme are provided through the NHS.
I use a boogie board (etch a sketch) for communicating. I find that easier than a computer. I am fortunate in that the MND has not progressed elsewhere (yet), but who knows what is round the corner. I can imagine your problems, Tiny dancer. if your mother won't co-operate.
Tell her please that I am living life almost to the full (this Covid-19 hasn't helped) and I am enjoying it. I am a Bridge player (currently playing on line) and that helps to keep my brain active and to fill some of my week. Please explain to her that she is missing a lot.
If I can help pleasefel free to contact me through MNDA.

[Suefromwakey]

Hello Stonehengeman,
I was born very close to Stone Henge many years ago

[matthew55]

I'm 56 this year Bulbar Onset no voice and boogie boards rule 😁x

[SueM]

TinyDancer welcome to the forum. I’m really sorry about your mum, you must feel helpless. I was and am devastated by my diagnosis, I am waiting to speak with the Neuropsychologist, I am hopeful she will help me to come to terms with my diagnosis. I’m 59, had retired from the NHS at 56, and together with my husband had made plans for the next few years. I am yet to be a Grandparent but had also made plans with my daughter to how we could help her with future childcare etc. What a bugger this disease is, it stops you in your tracks and completely mucks up not only your life but that of your loved ones.
I completely respect your Mums decision not to accept treatment or engage with the MND team, to be honest I found it all a bit overwhelming. All you can do is respect her decision and support her in that, she may change her mind she may not, we are all individuals. Take care and know that there are good folk on this forum who will do their very best to offer good advice.

[TinyDancer]

Thanks all, GaryM it is a very supportive group with great humour too - I agree with your tagline. denise Suefromwakey I think the hard aspect of someone blocking out of it is the fear of a crisis happening or a change of ability with no plan which could mean stress and suffering all round. I mean, I do understand denial and pretending something isn't happening. I know it's a way to protect from pain and we all need our coping mechanisms. Not all of us feel it's a good thing to process emotions. My Mum is from a family where you don't talk about that basically and in fact it was seen as a sign of weakness. Stiff upper lip and all that jazz. I'm glad the general consensus about mental health support has moved on in society.

I'm slowly learning that it's not something I can control. It's her illness and it's not up to me how she reacts to it. But yes it's hard.
Sorry @matthew5 that your friend turned to alcohol and withdrew. The mind is a complex thing and I guess we fight our battles the only way we know how at the time. I'll look at the boogie board. She has a white board that I got her, although doesn't like to use it.
SueM it must be such an intense mix of emotions. I think you're right about the overwhelm. The MND team were all rallying round but the more things were offered the more she withdrew. It's great support but of course it's support noone wants to have.

Ellie, you perceptively picked up on a rather odd situation. My mum lives with my Dad but she rarely interacts with him. They used to get on, things declined a few years ago and have now reached that point. It must sound odd but long story which I don't fully understand, relationships eh! The leaving some info out is worth trying although I might get it thrown at me 😬 Thanks for the guide. I spoke to a hospice once, they were so lovely. The MND team gave me the details and something called GoldLine which my mum is registered with. I think the help is kind of poised ready....for if she wants it. Maybe like you say Deb if something changed with mobility that would be a tipping point. At the moment, she's independent apart from not being able to talk. I pray it continues because I'm cant quite imagine how things will be if in the same mindset but different mobility.
Stonehengeman its interesting what you say about your PBP and I'm glad you are living your life the way you are. My mums diagnosis was just given as MND and the bulbar symptoms started 16 months ago.The symptoms have declined but fairly gradually. Diagnosis very quick. Tests such as MRI normal then nerve tests done then diagnosis via that and because fasciculations were noted and because of obvious bulbar symptoms. Though of course the medics haven't had a chance to monitor the progression. I keep wondering when something else will happen with other muscles but I know it's so unique to each person so I need to stop wondering, it's wasted energy.

I guess in the end there's no rule book on how to handle this disease is there. i may have in my head an opinion of the way I would react if I got it. But if it actually happened then who knows. Impossible to say unless I walk in those shoes.

Thanks all for your thoughtful comments x

[Stonehengeman]

I responded on 29 Jan. My ability to swallow has started a downhill journey. I am finding it increasingly difficult to chew food and it is collecting between my cheeks and gums/teeth. My wife has taken to wizzing my food in the Kenwood so that it is moist and sloppy. I can then get it down but still need to brush between my cheeks and teeth after any food. I am now using the button for some liquids (water and tea) but still drinking coffee (with difficulty) as I like to taste the coffee. I don't know how long it will be before I go onto everything through the button.

[matthew55]

Sadly there isn't a timetable but for me I was at your stage about a month ago, and today I can no longer eat or drink with my mouth. How's your tougue? 😁x