DAD - MND diagnosed now. What next?

[Positive vibes]

I hate saying this but it's time to let your father go. I can see both sides and all that will happen is everyone will suffer. Get him home and let him die in his own bed. He will be happy and you should be too just for knowing him. Stay Strong. x

matthew55

I know. I feel selfish wanting him to stay... the only thing we can do now, is have him home where he wants to be... x

[Positive vibes]

Positive vibes
Good morning,so sorry for you and your family to hear you are witnessing the end of life stage for your dad.
I guess it’s up to your dad where he wants to be but hopefully he can comprehend your concerns.

Maybe you can talk to the hospice team to see what care can be provided at home should your dad go home soon.
Sometimes night carers/ nurses can be arranged via NHS.This might inform your dads decision about returning home or remain in hospice care.My hospice team tell me they see no reason why I can’t remain at home for my end of life stage as they have the expertise in symptom control.However, if I felt my husband couldn’t cope even with support then I would consider hospice care( all recorded in my Respect / DNAR form)

Of course your mom also has different needs but from what you say it sounds like your dad now has 24 hour care needs.
Not sure if you all can visit at the hospice?

I really hope he gets good care and you as a family can support him wherever your dad chooses to be.
Your messages demonstrate how hard you and your brother have tried to keep your parents safe and well on what has been a steep learning curb
Watching a loved one close down is so emotionally draining so hopefully you feel the hospice team are there for you as well.
Kind Regards
Mary

Mary C

We have been talking a lot with the team, and they are so reassuring, that there will be a team supporting Dad and us, he won't simply be discharged... he's done his 'paperwork' including DNAR.

It's really restricted visits due to covid - a max of 2 hours a day (but can be split between 2 individuals) - only one person in at a time...

I can't thank the LOROS team enough, and the nurses, for being so understanding and caring... it doesn't stop the inevitable but it does soothe away some of the worries and stresses...

[Positive vibes]

Hello PV. It's heart-breaking dilemma. When my time arrives I would like to be drugged into an oblivion that was out of my hands so I wouldn't be aware of anything. I'm know this won't happen. If I had a dog I think I'd like to be home with it xx

Gordan1111

It's painful, so strange that we sometimes treat a treasured pet better (as in a release from pain & illness) than we do our own... and yet we are all still not ready to let go. These last months (April to now) have gone too quickly...

[Positive vibes]

So sad to read your update positive vibes. Love and hugs, Lynne x

Lynne K

Thank you, love and hugs to you and yours too x

[Positive vibes]

Positive vibes Thank you for the update, writing it all down must have had you in tears...

It's clear that your lovely dad's comfort is now first and foremost, so he needs the best pressure relieving cushion and mattress the hospice has (I'm sure their OT is on top of this) and to be repositioned regularly - that pressure area must not be allowed to develop into anything painful, the just because the skin isn't broken doesn't mean it isn't sore.

Dry lips - I'm sure the HCAs would happily reapply his lip balm as needed. FWIW, I find La Roche Posay Cicaplast lip balm unbeatable, expensive but works quickly.

I'm just a stranger I know, with no business telling you what to do, but... if you can honour your dad's wishes and let him know that he can do this on his own terms, give him 'permission', so to speak, so he knows he doesn't have to keep going at all costs - allowing him to let go, undeniably difficult though that is, is a great act of love. (by "you" I mean his immediate family)

You don't need to reply to me. I wish you strength over the coming days, weeks and months.

Love Ellie.

Ellie

I am trying to keep a lid on the emotions and think of all the practical things he needs... he was happier today, asking for spare toiletries, knowing he was coming home soon.

So your advice really helps - I will ask about the pressure relief things, possible sore development, and the good lip balm - if he complains about me buying it I will just say he is worth it...!

Those things are the easy part. It's the letting go that's hard...

Love PV x

[Positive vibes]

My mum was in a care home lying in bed looking like a corpse. She had Altzimers and had lost the ability to speak. I held her hand and basically told her it was okay to die. This was at 10pm. At 3am she died. I like to think she heard and understood me.

matthew55

Thank you for sharing what must be a painful memory. That's a really tough thing to do and face... is it wrong I hope he spends Xmas with us? Mum was saying she couldn't celebrate it this year, as he won't be there, but I am wondering if we decorate up ridiculously early whether it would be morale boosting for her, Dad and us? I guess I am just not letting go.... x

[matthew55]

You are so lucky to have a father like him. I cheered the day my dad died. 😉🤗😄😘xx

[Positive vibes]

Just a quick update and thank you to the people sending PM's of support - you know who you are xxx

We had Dad home with a team of 10 carers (in rotation, not all at the same time!) which included a night time carer sitting up all night and 4 day care visits for him. We also had the following:

Nebuliser machine - saline ampoules and basically 'steaming/misting' him with face mask daily.
Suction machine - basically like a mini hoover with thin pipe to get out his secretions from back of his throat.
Feed pump - into his nasogastric tube for all his fluids, liquid feed and liquid meds.
Syringe driver - permanently fixed via cannula into his arm for other meds needing slower 24 hour release - this includes daily District Nurse visits to attend to replacing meds/batteries, and tending to bed sore he has developed.
LVR or as I call it the squeezy bag thingy - for daily lung physio (4 squeezes quite forcefully for each breath x 20 daily).
2 walking frames
Wheelchair type commode
Lap table for over bed/chair
Urinal bottles (we bought)
Already had R&R chair
Toilet frames x 2
Plastic chair in bathroom for carer to give all over wash (no shower as can't stand)
Boxes of nutrition feed and sterile water - 7 hours feed and the rest of the time water via feed pump
Shelf of meds now liquid apart from quinine which is ground down and then put into water, plus litmus strips to test stomach acid and ensure tube still in stomach
Mouth care - mouth gel, dry mouth spray, chap stick, sponge on a stick (dentip) dipped into cool water to clean mouth, and mild toothpaste to freshen mouth which resembles the bottom of a parrots cage...
Cream for bed sore and dressings

Also - bought joggers as no longer wants zip up trousers, zip up tops as can't do buttons, laminated chart with diagrams and A-Z he can point to...

Myself, brother and carer's all trained on above...

Reality check.

Their home was difficult to negotiate even though a bungalow, funny angles on doorways, carpets, weird 'dance' around him trying to get Dad, one person, feed pump & stand, syringe driver in bag over shoulder, walker, into bathroom each toilet visit and assist onto toilet frame... exhausting for him.

With all training - none of us successful in extracting secretions record 16 times in one day, plus nebuliser (10 me, 6 carer overnight) failed. Result - no sleep for poor Dad. Wasn't using bed, using R&R in the end.

Too exhausted to do much except sit in chair, and constant toilet visits (runs).

I could go on. And on...

In the end, Dad felt it wasn't working and he wanted to go back into hospice. Feel a huge mixture of sadness, grief, failure and relief that he is getting 24 hour care again. Tried to explain he wouldn't get as good care at home as in there before he came out, but, nurses reassuring and said it was very rare they sent a patient home with his prognosis and the amount of meds/equipment he had. Plus, that being a typical (stubborn) male, he needed to try it and see if it was feasible, face the reality of the difference in care.

Sadly, there was also the issue that Mum disliked the amount of carers (or 'strangers') in their home, and was particularly un-nerved when the night carer popped his head round their bedroom door at night to check Dad. And again, I could go on...

So, he is back in the hospice... unfortunately, he has also deteriorated further, hands very weak now so they feel a walker isn't going to be usable anymore for him, not able to talk so relying on chart (still won't use iPad), and to crown it all, picked up an infection we think from a carer (all young enough to have their own kids and schools re-opened) despite all using PPE, I was obsessively wiping down his equipment with anti-bacterial wipes after use, replacing dentips, etc etc. They are testing for C-19, so we are hoping it isn't that, however all of us have had our 2 jabs.... so we can still visit....

Worried as he had hand tremors and very tired now.... feeling disappointed that things didn't work out....

Back to the daily visiting again, keep telling him he is worth it, and he is being so stoic about it all, makes it all easier on us.... very tired now...

[matthew55]

You deserve a medal young lady. It's a long old list but has he had a penile catheter fitted? It changed my life to the light side and no mistake. 👍🤗😘😍xx

[Lynne K]

Thank you for the update about your dad. I’ve been wondering how’s he’s getting on. I hope the you all can now get some much needed rest, love Lynne x

[Daught21]

Hi Positive vibes gosh there is alot going on. I hope you are all okay and your Dad is settled back in the hospice. Take care 💕💕

[richard]

Positive vibes Just a very big HUG from me to you, all your family and Dad.

Richard

[Ellie]

Positive vibes Many thanks for the update. If your dad feels that he gets the most appropriate care in the hospice, that's where he should be, hard though that may be for the family.

Sending hugs to you all. xx

[Deb]

Positive vibes . Sending big hugs to you and your mum and dad.

You must be exhausted but one day I hope you will feel very proud of how you have coped throughout this heartbreaking situation. The love you have for your dad shines through your messages.

Love Debbie x

[Positive vibes]

You deserve a medal young lady. It's a long old list but has he had a penile catheter fitted? It changed my life to the light side and no mistake. 👍🤗😘😍xx

matthew55

He is manfully resisting this, but, I can see this happening, he is needing 2 nurses to help him with lightweight walker (or the 'walk assist' they have) and they had to move him to a larger room to fit in all his equipment... even with his glamourous assistants he doesn't make it in time and is now having accidents. I noticed they had given him incontinence pants, but, he objected and he is back to normal underwear and 'winging it'. They did suggest a conveen, a cross between a condom and catheter i.e. bag with tube on the end, but he refused... hence us buying more joggers/pyjama bottoms today for him... xx