My husband was diagnosed with bulbar onset MND in April. His way of dealing with it is by not talking or thinking about it, and trying to do the things he has always done. I appreciate how hard it is for him, and that he wants to keep hold on normality but he is being quite reckless, which is making me incredibly stressed, and over-protective. Although not hurting himself seriously, he has had several falls. I really don’t know how to handle things. Do I let him do what he wants to do, and possibly injure himself? I’ve tried to persuade him to just be a bit more careful, but he can’t seem to accept his limitations.
Hi Polly,
Welcome to the forum.
Your husband’s diagnosis must have been a big shock for both of you.
It sounds like he is in denial. Is he receiving any professional help to help him come to terms with his diagnosis?
I suspect, you can’t be there to change his behaviour, only he can do that. All you can do is be there to support and help him when things go wrong.
The MND association have an advice section for families https://www.mndassociation.org/support-and-information/for-carers/support-for-family-members/
Keep posting.
Melly1
Hi Polly,
Seems to be a common personality trait in people with MND- they’re so headstrong!
Unfortunately, from my experience, it takes something fairly major (i.e. a shock to the system) for them to realise that they need more help as the disease progresses.
With my Gran, it took her falling down on her own in the house, being unable to reach the phone or get up for 2.5 hours to realise she needed 4 carers a day and a personal alarm. Before this, she was reluctant to even have one hospital discharge carer for half an hour in the morning.
You have to be a little bit cruel to be kind- make them realise that they need help before they really need it (as you may know from the MND Association’s helpful leaflets, planning early is the one most important thing).