DAD - MND diagnosed now. What next?

[Mary C]

Hi positive vibes, well you are certainly making progress and glad your siblings are on board too.I think you are right to encourage your parents to enjoy each day.I remember when I was diagnosed and the hospice team started to arrive initially thinking I must be near the end.However,they were brilliant at explaining they needed to meet me and my husband to see how I was feeling mentally and physically and assuring us of ongoing support by their team.They have been amazingly supportive when I need it and available to contact if the need arises. They always ask my hubby how he is managing .I hope you get time for yourself as it can be draining being the main carer .
Best wishes
Mary

[richard]

Positive vibes Thank you for sharing. Ellie is right, pace your self, hopefully this will be a long journey for you all. Remember to find things you can all laugh about, we have an expression “ You have to laugh about it”, it’s not funny but unless you have humor it’s very debilitating. And remember you can all cry about it as well. We on this forum have all been there and done it.

Take care and big hugs

Richard

[matthew55]

For us laughter is never inappropriate 😂

[Positive vibes]

Just a quick post to thank everyone for posting, but, the dog has chosen now to poke me in the leg demanding walkies. I definitely get what you all mean about the long haul.

I did care for another elderly relative, with another terminal illness, and frankly I was very inexperienced and tried to do too much, being over-protective and tried to wrap them in cotton wool. Big mistake, huge amount of worry and stress, not great for either of us.

[Deb]

Just sending you big hugs ! You have such alot going on and it must be so exhausting for you.

There is no right and wrong way of doing things ... just doing your best is enough. Your parents are lucky to have such a wonderful daughter. ( i know that's what you are now !)

Take care of yourself too,
Love Debbie x

[Positive vibes]

Positive vibes Your dad sure is lucky to have you!

Pace yourself, it can be a long haul, and don't forget you have your own life to live too... x

Thank you Ellie, erm, I have no life, ha!

[Positive vibes]

Hi positive vibes, well you are certainly making progress and glad your siblings are on board too.I think you are right to encourage your parents to enjoy each day.I remember when I was diagnosed and the hospice team started to arrive initially thinking I must be near the end.However,they were brilliant at explaining they needed to meet me and my husband to see how I was feeling mentally and physically and assuring us of ongoing support by their team.They have been amazingly supportive when I need it and available to contact if the need arises. They always ask my hubby how he is managing .I hope you get time for yourself as it can be draining being the main carer .
Best wishes
Mary

Hello Mary C

I feel like we are just on the first rung of the ladder, and although armed with a bit more info, I do know that the majority of help will fall on me at the start of this, simply due to where the siblings live/work.

I know it sounds a bit odd not delving headlong into the medical stuff, but, getting my parents out and about and enjoying life is as much for our benefit as theirs, since I don't want any of us brooding on the 'what if's' or what's around the corner. Have to sort out a camera that works and make memories....

Yes, the word hospice has a double impact for the parents, as they helped look after Mum's sister at the same place, so it doesn't have the happiest connection for them.

Your experience of the support they give is incredibly up-lifting to me though, thank you for sharing that, and I hope will reinforce what I had said to him about support, not simply palliative care.

Lots of luv n best wishes to you and yours too

[Positive vibes]

Positive vibes Thank you for sharing. Ellie is right, pace your self, hopefully this will be a long journey for you all. Remember to find things you can all laugh about, we have an expression “ You have to laugh about it”, it’s not funny but unless you have humor it’s very debilitating. And remember you can all cry about it as well. We on this forum have all been there and done it.

Take care and big hugs

Richard

Hello Richard

My sharing with you all is really helping to get my thoughts straight and organised, so I may over-share, if anything.... definitely know this is a marathon, not a sprint, and don't want to end up a burn-out because then I can't be there for them.

You are so spot on, I don't want their memories of me to only be about turning up to help with medical stuff/issues, I want it to be about us living and getting some fun out of our time together, even if it does turn into dark humour... and I have already been crying over all this. It kind of felt like I was grieving for who they were, if that makes sense, compared to who they are now?

Like they aren't the same Mum and Dad any more, or, maybe it's just that feeling of finally them losing their ability to look after me, now its the other way around. Maybe a long over-due time for me to grow up, and realise that I am 'adulting' now....

[Mary C]

Hi positive vibes,
I agree we get out and about as much as we can.I too don’t need to dwell on the future all day every day.So this weeks simple pleasures will be a wheelchair push to nearby woods to see the carpet of bluebells.A trip to sit by the river(in the car if wet).Friends are coming to see us .This is all alongside speech therapist coming to discuss communication aids.My speech is ok just slurred at present but my hubby and daughter wanted to discuss basic aids .Also a trip to hospital to see dietician to discuss having a PEG and possibly need for supplements.It’s easy to get overwhelmed with the “what ifs” but I need to not ruin today overthinking might happen next week.I have a strong faith so that’s a great help too.I do of course have emotional moments as does my hubby but like you said we are keen to make memories together and with our family and friends,
Hope you get a camera sorted.
Best wishes
Mary C

[Positive vibes]

Just sending you big hugs ! You have such alot going on and it must be so exhausting for you.

There is no right and wrong way of doing things ... just doing your best is enough. Your parents are lucky to have such a wonderful daughter. ( i know that's what you are now !)

Take care of yourself too,
Love Debbie x

Hello Debbie, aw thanks

I did toy with the idea of teasing you about that, but, you gave me a chuckle and cheered me up so don't worry about it!

I am doing my best. I took 'time out' yesterday since the last 3 days before that were very intense & hectic, made sure I caught up with housework, etc, but also had a 'pamper' which gave me a chance to rest and let it all sink in.

Today me and Dad are hoping to see GP, hand over the letter of permission, discuss any current issues, and get DS1500 form sorted. I am feeling like I need to fight on his behalf, to make sure he has all the support he (and we) need.

This is mostly down to the fact that I felt he was ignored for at least 6 months, having only phone appointments, told to take pain killers, then final face to face appointment (on his own) where quinine was prescribed, and he was basically just left to it. He had tried to sort this himself, but, I really felt that his symptoms were being either missed, or simply classified as 'old age' with a referral to geriatrics only. Even when he rang to cancel his appointment with geriatrics, they questioned him ('Was he sure he meant to do this?') and they ignored him and re-arranged another appointment which he had to ring and cancel again....

I do think that although NHS are going through a horrendously busy time, there may also be an unconscious bias towards age, and the 'normal' deterioration that goes with that, if there is such a thing. I am not sure my Dad emphasised enough either the rapid escalation of symptoms/deterioration, compared to how fit he was last year (using gym equipment, walking miles, etc), as this is more unusual for his age group. I guess we are lucky he could afford to have a private consult, and lucky he decided to face this head on, and even luckier that he has decided to accept help from us.

Maybe it's also a question of priorities? Who they decide needs most help? Funding? Simply not enough staff to cope? Or all of this.... I am grinding my battle-axe & girding my loins....

Love to you too Debbie x

[Positive vibes]

For us laughter is never inappropriate 😂

Thanks matthew55! I am seriously thinking about looking up MND humour/quotes to banter with my Dad.... how inappropriate am I?

[Positive vibes]

Hi positive vibes,
I agree we get out and about as much as we can.I too don’t need to dwell on the future all day every day.So this weeks simple pleasures will be a wheelchair push to nearby woods to see the carpet of bluebells.A trip to sit by the river(in the car if wet).Friends are coming to see us .This is all alongside speech therapist coming to discuss communication aids.My speech is ok just slurred at present but my hubby and daughter wanted to discuss basic aids .Also a trip to hospital to see dietician to discuss having a PEG and possibly need for supplements.It’s easy to get overwhelmed with the “what ifs” but I need to not ruin today overthinking might happen next week.I have a strong faith so that’s a great help too.I do of course have emotional moments as does my hubby but like you said we are keen to make memories together and with our family and friends,
Hope you get a camera sorted.
Best wishes
Mary C

Hello Mary C

That sounds lovely, even if the weather isn't, but especially the 'not dwelling' part. I have often found that the greatest pleasure is in the smallest things, flower buds ready to burst giving the promise of Spring, the cheeky robin delving straight into the soil I've just dug with no fear, birdsong going crazy in the early hours when the elderly dog insists she 'needs to go'. Frost on the branches like a dusting of glittering sugar icing. Seeing the dog 'sleep barking and twitching' in her sleep. Maybe dreaming of chasing next door's cat... I could go on.... ha!

Sadly, we don't have a strong faith between us all, which might have given us more inner strength to cope with this, although Dad is a baptised (non-practising Catholic). My highly inappropriate joke to him is that he can repent on his death-bed, whereas the rest of us are going straight to the other place.... not sure I will be using that joke now though....

At the moment, Dad is feeling he doesn't need any aids, although he does need Mum to help with finer hand motions like buttons. I am currently biting my lips as the words 'velcro', 'easier' or 'baggy comfort clothes' come to mind.... I think he still needs more time to accept his diagnosis, he still hasn't looked at the guide, so may be in a bit of denial now.

Thank you for sharing your on-going journey, and the issues you are facing, I know Dad is on the early road to this....

[Positive vibes]

Hey all

Just an update so far:

DS1500 form filled in by GP and I am looking at it now.
Request for AA via phone (thank you David on the financial helpline)
MND nurses arriving today, got a phone call last night, for assessment

Works still not complete on parents home, the place is a building site cum trip hazard nightmare, so, hoping that they don't try to persuade Dad to go off to the hospice in sheer horror...

Mum freaking out at the word 'Hospice' and thinks they are taking him away, despite the fact we've all explained to her that's not happening.

And 'press pause'...

I can't really think of what to ask them, since asking for adaptations seems stupid when the entire place is a death trap, plus Dad had another fall but wouldn't tell any of us.... argh.... Mum is lucid enough (her memory is sporadic as are her accidents) to ring me thank God.

My coping strategy is to totally ignore the surrounding environment, and act as if everything is fine, in the vain hope that the nurses do the same...

I will have my guide (for carers of MND) and notepad to hand.... double argh...

Any last minute advice is most welcome..... thanks in advance

[richard]

Have you thought what is needed? Indoor wheelchair, shower stool, gripper to pick things up, ask what financial help is available although most is means tested and if you have tuppence in savings you may not get it. Drinking cups, Carers when needed. Don’t forget to say I’m new to this what should I be asking and looking for?

The DS1500 is great you will now get some funds about £150 per week if it’s the full allowance. May I suggest if you are having to post it it’s sent by Special Delivery not the usual Signed For post. You don’t want it to be lost.

i know my ramblings will not be a great help and I’m sure others will help as well.

Richard

[richard]

Oh and the MNDA often give grants but not retrospectively. Give them a call when you can.