DAD - MND diagnosed now. What next?

[Positive vibes]

Hello all.

Well, here I am, in the place I was hoping not to be, wondering what is in store for Dad, and the rest of us. It is falling to me to be his carer, as poor Mum is still on referral for memory clinic, with various other health problems, 2 other siblings living too far away to do much, although we are due to have a socially distanced meeting within the next week.

This is to help Dad decide what he wants to do, what his wishes are, and any immediate decisions he might need to make whilst he can still talk. His speech is noticeably slurring now. We have no idea of the type of MND, with restrictions he saw consultant alone (I drove him there and back), and he wasn't aware there are different sorts/progressions (yes I have been browsing on here). It may be that he was too shocked to ask much as he was only in there 10 minutes.

Positives:

Consultant is writing to GP, to set up monitoring/testing, get help from specialist MND district nurses, and fast-tracking this. This is a huge relief for me, as I was reading too much on here about what might happen, knowing Mum wouldn't cope.

Dad doesn't seem too down, accepting diagnosis (I think it's a relief for him to finally know), and is still doing as much as he can to be independent. I think he has been really brave facing this, seeking help, and coming to terms with it. He's in his early eighties, so, I guess he has seen and experienced a lot in life.

They do live in a bungalow, with shower room already in place, and second, smaller en-suite toilet (although this is more like a cupboard), so all one level.

Negatives:

Work is still on-going with repairs to loft bedroom (fire, accidentally caused by Mum), so protective screen in place shielding parents from work men and vice versa so they can't access kitchen, shower room or dining area in the day when trades are there.

Mum's memory problems worsening. Really need to push MC on this to get her help, possibility of meds may slow this down?

Falling on me as sole carer/designated driver - but whilst Mum's condition is episodic I know she will want to help as much as possible. Hopefully this may also help her?

We are in new territory here, so, my first question is, what kind of help or support would they get, aside from the nurses? Any advice on what to do/not do to help them?

Thanks in advance all, sorry its a long post, but this is helping me organise all those things bouncing around in my head.

[Bowler]

I’m sorry it’s come to this for your dad and the family but it would appear your dad is being strong.

The first thing I would say is don’t panic and don’t think you have to rush into making changes or getting loads of stuff.

Secondly be prepared to be bombarded with health professionals. It is necessary for each discipline to do an initial assessment of your dads immediate needs. If I were you I would have a pad handy to take notes at each of the sessions because it can be confusing who said what.

If you haven’t already got a copy of living with MND here’s a link. It’s a useful doc to have. I would suggest not reading it all in one go but use it more as a reference book.

https://www.mndassociation.org/support-and-information/information-resources/information-for-people-with-or-affected-by-mnd/living-with-mnd-guide/

Finally as you have already found there are loads of lovely people on here to offer hints and tips so you will never be alone.

Take Care...Phil

[denise]

hi
i agree with phil. lots of good advice there. as you will already know everyone's mnd is different so there are no hard and fast rules. your dad might not appreciate too many changes. my husband is 70 this year and he really doesnt want to change anything. he would rather just continue as he is and insists 'i am ok' so there's not a lot i can do. though yesterday he did get a good telling off which really made my day. i think you should just try and nudge him in the right direction.

we are all here to help if we can and as i am already sure you know we ask everything and anything on here and usually someone has an answer.

love and hugs
denise xx

[Lynne K]

I’m sorry that your dad and mum are both ill but obviously dad is worse. Take good care of yourself if as you say you’ll be the only carer.

Your dad will get an OT (Occupational Therapist); a Dietitian; a Physiotherapist and Speech Therapist. Also he ought get Wheelchair Services as he’ll need them sooner or later.

As you mentioned your dad’s voice is slurred then maybe look into voice banking before it gets too bad. There’s lots of discussion about that on here. A search ought to bring those up.

Hugs, Lynne

[Gordan1111]

Don't try to take on too much. Both enjoy the small things. Other stuff will occur to you - add them to a list. Be strong for all of you x

[Banned]

Knowing what MND will absolutely help you plan for dad. A gene test will help and should have been offered. For example, dementia develops for some of us.

You are definitely doing 'the right thing' by standing by your parents. I can't get my head around the modern 'abandonment approach'. Things may develop quicker with your dad being elderly, but as our friends say, "everyone is different".

[Ellie]

Positive vibes One more suggestion: given your dad's age and your mum's own health issues, it might be worth having a Social Worker on board and it's definitely worth getting a referral to his local hospice (from hospital, GP, Nurse or some take self-referrals) for extra assistance.

[Positive vibes]

Thank you everyone for posting. I am sorry to say I am having a 'wobble' and very down and not ashamed to say I have been crying. I have been ferrying them both to different hospitals/appointments/consultants/doctors, so been too busy to even think properly. That's without chasing up the trades doing various repairs on their place from the fire and its aftermath.

I think it is starting to sink in now. I will get over this, dust myself off, and be back here soon, but, giving it a break for a day or so. I may pop in to browse rather than post but there is so much info I am getting a bit over-whelmed.

[Lynne K]

A good cry lets all of your stress out and it’s better out than in. So it’s not something to be worried about. I hope that you can manage some ‘me’ time, maybe even a short walk to blow away the cobwebs away. Lynne

[matthew55]

If you didn't feel like that you wouldn't be human 😁x

[Banned]

You have my admiration Positive. It may seem overwhelming but it is not a match for you.

It doesn't help trying to sugar-coat the bad news but you will soon be on top of it. The NHS is there to help you and we will guide you on what you need if required.

Love xx

[Positive vibes]

I’m sorry it’s come to this for your dad and the family but it would appear your dad is being strong.

The first thing I would say is don’t panic and don’t think you have to rush into making changes or getting loads of stuff.

Secondly be prepared to be bombarded with health professionals. It is necessary for each discipline to do an initial assessment of your dads immediate needs. If I were you I would have a pad handy to take notes at each of the sessions because it can be confusing who said what.

If you haven’t already got a copy of living with MND here’s a link. It’s a useful doc to have. I would suggest not reading it all in one go but use it more as a reference book.

https://www.mndassociation.org/support-and-information/information-resources/information-for-people-with-or-affected-by-mnd/living-with-mnd-guide/

Finally as you have already found there are loads of lovely people on here to offer hints and tips so you will never be alone.

Take Care...Phil

Hello Bowler (Phil)

Thank you for that link, I have it saved, but only dipped in a bit so far. I think I will be using that heavily....

And thanks for preparing me and the parents for the first steps. My first instinct was to rush in mob-handed and start fussing around and doing everything for Dad. After diagnosis, I had to step back and let it sink in, but had a good conversation with them both at the week-end.

I realise that if I try to do it all for them, I will be a) Exhausted and risk burn-out and b) Not doing him any favours. As this causes muscle wastage, him actually being mobile and using muscles as much as he can, whilst he can will be better for him and us all. Reading on here, having as much self-reliance as possible as long as possible, is not only good for his physical health, but, also just as important for his mental and emotional health.

Baby steps and learning curve for us all....

[Positive vibes]

hi
i agree with phil. lots of good advice there. as you will already know everyone's mnd is different so there are no hard and fast rules. your dad might not appreciate too many changes. my husband is 70 this year and he really doesnt want to change anything. he would rather just continue as he is and insists 'i am ok' so there's not a lot i can do. though yesterday he did get a good telling off which really made my day. i think you should just try and nudge him in the right direction.

we are all here to help if we can and as i am already sure you know we ask everything and anything on here and usually someone has an answer.

love and hugs
denise xx

Hello Denise, luv n hugs to you both too.

This is a big concern. My Dad is 82. He wouldn't even move out whilst repairs are being done to their home (Mum accidentally caused a fire) when the insurer's have repeatedly advised them to move out (deemed unsafe by both Fire Commander who attended the fire, and surveyor for insurers), and are willing to find and pay for alternative accommodation. So, any changes/adaptations which are offered, I am afraid he will automatically refuse.

He is still driving (automatic car) despite not even having enough grip strength to lift a full kettle. I think he can just about manage, but, what is truly terrifying me is that (God forbid) if he needs to react quickly to something (pedestrian walking out unexpectedly, other vehicle having accident) he wouldn't be able to...

I don't want to lay down the law and say 'You can't drive', I think that would have a really negative impact on his mental health, as he has always ferried Mum and family around. I feel it's really important for him to lead us on what help he wants, as making decisions for himself may end up being the only independence he has as this progresses.... yet at the same time I worry that he might be a danger to himself or others when he's behind the wheel.

The only positives are that he is starting to allow me to take him for tests/consultations, whilst he is still driving himself and Mum to local shops, etc. Maybe I am worrying too much.....

[Positive vibes]

I’m sorry that your dad and mum are both ill but obviously dad is worse. Take good care of yourself if as you say you’ll be the only carer.

Your dad will get an OT (Occupational Therapist); a Dietitian; a Physiotherapist and Speech Therapist. Also he ought get Wheelchair Services as he’ll need them sooner or later.

As you mentioned your dad’s voice is slurred then maybe look into voice banking before it gets too bad. There’s lots of discussion about that on here. A search ought to bring those up.

Hugs, Lynne

Thanks Lynne

I am trying to pace myself whilst inside my brain is doing the 'headless chicken' approach.... ha!

We are still waiting on responses from GP or any of these yet. Consultant was to write a letter to GP, but, I have also let the local GP surgery know via e-mail as soon as they were open today. Dad wants to sit back and wait, but one of my siblings is urging us to ask for a D - something form ASAP.

[Positive vibes]

Don't try to take on too much. Both enjoy the small things. Other stuff will occur to you - add them to a list. Be strong for all of you x

Hello Gordan1111

It's difficult. If it was only Dad to help, it would make things more straightforward. I have found a large ring binder with the plastic 'pockets', and taken it to them, so they (probably me) can organise the paperwork which is bound to come. Then we will be organised for visits/dates/diagnoses/assessments.... Loin-girding time....