DAD - MND diagnosed now. What next?

[Positive vibes]

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".

Hello Graham

I looked at Dad's meds - Riluzole, I think its called. He remembered then that the diagnosis was ALS, for his MND. So now we have a bit more info...

I couldn't leave my parents to face this alone, they are kind and compassionate, helped out so many family members with terminal illnesses themselves (cancer x 2, dementia and heart conditions also), and now they are the ones needing help (and finding it hard to accept they need it). Love them to bits and its horrible this is happening to them. I may get some more help from another sibling in the future... but that is only further down the line when and if 'things get dire'. God, it sounds horrible to type that...

[Positive vibes]

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.

Hello Ellie

I think that's a good point, I will raise this at our family meet-up, but I have a suspicion that the parents might struggle to accept SW (not great experience of one in the past), and I think I will need to tactfully suggest a hospice as just another area of support which may be a long time ahead in the future? They aren't worried about discussing their deaths, and have wills, etc set-up, but I am not sure I or my siblings, are thinking that far ahead yet....?

[Positive vibes]

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

Thanks Lynne K

It has, it has been building up anyway with regards to Mum's possible early signs of dementia, so Dad's diagnosis has kind of broken the dam, as it were.

I have a hairy, four-legged assistant, who helps me get out into the fresh air, with lots of doggy antics to cheer me up...

[Positive vibes]

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

Thanks matthew55

I think I am, last time I looked! Ha! x

[Positive vibes]

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

Thanks Graham

Not sure I deserve admiration, but, that's very kind of you. I guess delving into this, research, organising their appointments, chasing up trades, etc is keeping me busy, so I don't have that much time to get upset. As Mother always says 'I just get on with it'....

Feeling like we are in the eye of the storm that's about to arrive.....

[Barry52]

[QUOTE=Positive vibes;n49643]


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.

Hello PV,

You won’t have to make this decision as it will be in the hands of DVLA and the medical team. Everyone fears loosing the independence driving gives us but after diagnosis of MND it must be declared. They often grant a 1 year license and occasionally they may insist on a competency test. I hope your dad can continue to drive however in the confusion of diagnosis the minor details are often overlooked.

Best wishes,
Barry

[Lynne K]

I got a 3 year medical driving licence and it expired in March this year. I didn’t re-apply as my husband now does all of the driving. So I now don’t have a driving licence, Lynne

[Ellie]

I think I will need to tactfully suggest a hospice as just another area of support which may be a long time ahead in the future? They aren't worried about discussing their deaths, and have wills, etc set-up, but I am not sure I or my siblings, are thinking that far ahead yet....?

OK, that is a common misconception about hospices - one of their aims is to make life better for people living with a life-limiting condition (MND, for example) they are not only concerned with end of life care.

I suggest you google his local hospice and see what they offer - most have physiotherapy, occupational therapy, complementary therapy, social worker, counselling, as well as medical care. Many also offer day respite, i.e., your dad could go for 5-6hrs once a week for a break from routine, but really to give the family a break!

Many of us here get excellent services through our hospice and often, if community services cannot/will not provide something, the hospice comes up trumps. So, check it out, things have changed in hospices.

[Deb]

Hi Positive vibes,

My goodness you really have your hands full. You must feel overwhelmed with everything. I know its easier said than done but try and look after yourself too. If you can take one day at a time and maybe make a "to do " list and keep it achievable.

With regards to driving, you have to inform the DVLA of an MND diagnosis. As you know we are all effected differently but I had stopped driving before I was diagnosed because of my weak feet. I was worried i couldn't brake effectively. At diagnosis the consultant said i shouldn't drive unless i had an adapted car. However, some people with MND are safe to continue driving for some time.

Sending you big hugs and more positive vibes,
Love Debbie x

[Positive vibes]

[QUOTE=Barry52;n49658]

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.

Hello PV,

You won’t have to make this decision as it will be in the hands of DVLA and the medical team. Everyone fears loosing the independence driving gives us but after diagnosis of MND it must be declared. They often grant a 1 year license and occasionally they may insist on a competency test. I hope your dad can continue to drive however in the confusion of diagnosis the minor details are often overlooked.

Best wishes,
Barry

Thanks Barry52!

That's a relief. It was one worry that I wasn't looking forward to addressing with him. I think about a year ago he was pleased to get his 3 year licence, and, at that time he was fit to drive. As its an automatic, he still feels ok to drive, his feet aren't affected, but its his upper arm strength and grip that is. Need to talk to him about letting DVLA know, and awaiting assessment/contact from everybody else. I really feel, despite my concerns, that he needs to know he can do something, i.e. drive because I don't want him to get negatively impacted by this, I fear he might give up at his age...

[Positive vibes]

I got a 3 year medical driving licence and it expired in March this year. I didn’t re-apply as my husband now does all of the driving. So I now don’t have a driving licence, Lynne

That's good to know Lynne, that it doesn't immediately mean no driving.

[Positive vibes]

OK, that is a common misconception about hospices - one of their aims is to make life better for people living with a life-limiting condition (MND, for example) they are not only concerned with end of life care.

I suggest you google his local hospice and see what they offer - most have physiotherapy, occupational therapy, complementary therapy, social worker, counselling, as well as medical care. Many also offer day respite, i.e., your dad could go for 5-6hrs once a week for a break from routine, but really to give the family a break!

Many of us here get excellent services through our hospice and often, if community services cannot/will not provide something, the hospice comes up trumps. So, check it out, things have changed in hospices.

Thanks Ellie, I have fallen right into that misconception, having no real knowledge that they also focus on quality of life for conditions like that. It is going on my list! That is opening my eyes to what is out there beyond the GP & District Nurses.

[Positive vibes]

Hi Positive vibes,

My goodness you really have your hands full. You must feel overwhelmed with everything. I know its easier said than done but try and look after yourself too. If you can take one day at a time and maybe make a "to do " list and keep it achievable.

With regards to driving, you have to inform the DVLA of an MND diagnosis. As you know we are all effected differently but I had stopped driving before I was diagnosed because of my weak feet. I was worried i couldn't brake effectively. At diagnosis the consultant said i shouldn't drive unless i had an adapted car. However, some people with MND are safe to continue driving for some time.

Sending you big hugs and more positive vibes,
Love Debbie x

Thanks Debbie!

I have already been juggling more appointments, for Mum this time (urine incontinence & Memory Clinic chase up), to see if there is anything more they can do (surgically) for her. I am taking her shopping tomorrow, but, Dad had to ring and check, as she misremembered again and thought I was taking her on Wednesday. We are synchronising calendars constantly, but, sadly poor Mum forgets to check the calendar, and gets convinced things are on a different day or time. Then she starts arguing Dad is wrong, so I have to go round or talk to her on the phone, to reassure her. She also forgets which day it actually is now. Gets a bit tiring.

He says she is getting to be really hard work now, so, I think part of looking after him, is taking her out for a few hours, so he can rest. I am focusing her on getting things to help Dad, like warm socks in bed which seem to help a bit with cramps, supplements (thanks for the suggestions all!), massage oil and heat pads. He actually didn't wake up with severe cramps last night, using one of those chemical heat pads, so we will look at both those & electric options, basically experiment to find out which works best for him.

He was on a diet, but, now he says 'Sod it!' and also wants us to get his favourite junk food, i.e. chocolate! I can't say I blame him....

[Positive vibes]

My brother has mentioned the 'Blue Badge' scheme, which would be incredibly handy for Dad if/when he drives, even if its only to the local supermarket. Does anyone have any advice or experience of this? Should this wait until the medical staff/teams have seen and assessed him? Thanks in advance all....

[Bowler]

Have a look at this.

https://www.gov.uk/apply-blue-badge