DAD - MND diagnosed now. What next?

[Positive vibes]

Positive vibes Oh, I cannot tell you just how relieved I am that your dad is in the hospice, not the hospital.... xx

Thank you Ellie, they have MND specialist consultants, and a knowledgeable team, and support staff, and counselling, all of which I am talking with... to know that the staff actually care and aren't simply slapping inconsistent levels of puree in front of him which he can't eat is a massive relief...

[Positive vibes]

Positive vibes

That's brilliant news.

Mum with another condition plus dementia, said she would rather die at home than live in the hospital.

Has put wishes in writing (they shouted at her for having hallucinations when sick).

I had to get her an advocate as they were not listening to me, her daughter.

I know all about fighting, just moved hubs (MND July 2020) and I for the second time in 8 months so he could get a wet room

No shower for 5 months!!!

You are there for everyone, you are doing a grand job.

Take some breaths and try and relax (hard I know)

I learned a lot, reading all your updates

Big virtual hugs

Donna

Thanks Donna - hugs to you to. Girl power and fight on!! x

[Positive vibes]

I’m relieved for you too, and smashing that your dad is happy too. Lynne x

Thanks Lynne K! x

[Positive vibes]

Positive vibes
So glad you dad is in Loros Hospice where I am sure they will ensure his comfort and do their best to sort symptoms.
Not running down hospitals but the hospice has a different focus and given the choice for myself it would be the hospice .
Lets hope your dad gets his nutrition sorted.
Let’s hope that your dad feels very supported and your mom and yourself and your brother feel it’s the right place for your dad right now.
Best wishes
Mary

Keep us informed how the hospice stay goes.

Thanks Mary C x

Yes, the hospitals seem to be understaffed and over-whelmed, and whilst Dad was getting fluids via IV, they just didn't seem to have a simple grasp of the fact there was a lot more support he needed, even for hygiene, dressing etc... brother was relieved enough to spend a few days away..

[Positive vibes]

Positive vibes you are doing an amazing job and you should be very proud of yourself. I'm very glad your dad is in a comfortable place now but im sorry it was such a struggle for you all.

Sending you love and hugs,
Debbie x

Thanks Deb x

It is very tiring, and I still think I could do more...

[Positive vibes]

The only person judging you is you. Stay Strong 🤗🙏💗👍xx

Thanks matthew55 x

I am beating myself up that the hospital didn't react quickly enough to tube feeding him... not that I could get in because of quarantine (2 weeks but he was in there 5 days). Kept poling up outside the ward doors with excuses daily e.g. clean clothes, newspaper, so I could ask the staff if they were doing x,y, z... short of scaling the walls outside and pressing my nose against the windows I guess there wasn't a lot more I could do about it!

[Positive vibes]

Update:

We have had the sad news from the MND consultant and nurse team that Dad may only have two months left... cannot believe it. All of us in tears in his room. All he wants now is to spend those last weeks at home with us, although a care plan/package needs to be put in place. He is refusing nebuliser/carbocisteine still, so cannot get his secretions sorted. They are going to try different meds. His speech is slurred so we struggle to understand him. However, he just doesn't have the energy/motivation to use iPad. He lists his symptoms now as:

Unable to eat - can't swallow fluids, liquid meds or even sloppy puree. Doesn't even want to suck a boiled sweet.

Constant tiredness - even a short visit he falls asleep.

Dry mouth - using a swab on a stick dipped in cold water to help this, but, notice he struggles to hold stick (think thin round lolly sweet stick with foam square of sponge on end, from sterile plastic bag - sponge about 1inch square - called dentidips or similar?)

Dry lips - can't squeeze out the lip balm in a tube staff provided, so bought generic dry lips stick e.g. chapstick type and turn it up for him to smear - have to keep the cap lid off/loose.

Struggles to answer mobile - small buttons, or use tv remote now, or pen for crosswords.

Everything goes via NG (nasogastric tube) - water both for flushing tube and hydration, liquid type feed similar to fortisip, liquid meds. Starting to develop routine of night feed for him so he isn't strapped up all day to it - they have a machine through which the feed etc is dripped through (increased from 25ml per hour to 60ml/hour now).

More toilet accidents - slower mobility so can't get on walker to walk the 12 feet to toilet in time - he will need commode, or, bed pan/bottles soon.

Starting to get sore at bottom of spine - staff using cream to relieve this. Not yet a pressure sore but I think this is developing.

He wants to sit up in R&R chair in the day for visitor, not be in bed, so spends a long time in the chair which is causing this.

Physio still working with him - he was able to stand up with aids.

Still needs help with dressing but that has been for some weeks now... lack of fine motor skills...

Above all else, despite the lovely care he gets, and all the professionals at his beck and call, it still isn't home, and he is such a home bird.

The down side is that he won't get the 24/7 care he gets now. But, the upside is that he will see us all the time, it will be quieter, not being poked and prodded as much, so he will have more peace...

Trying not to let the emotions get to me, and be more practical as to what he needs... sadly siblings disagree, one feeling he should stay in hospice (where he would probably get the best care, and prolonged life), the other feeling he must be where he wants to be for his end of life choices, even if this reduces his time with us... poor Dad has consistently said that it isn't much life for him and doesn't want to prolong it like this... I think if he was younger he would fight more, want to see us achieve goals, etc. but he is looking backwards, nostalgic for the past now, and I don't feel he has any fight left. Don't want him to go, don't want him to suffer, this illness is merciless.

Sorry, getting weepy now, but I can't believe how quickly all this is happening to him... last year he was helping me hang curtains, walking miles with dog, walking a lot, even exercising... I guess I feel I have been fighting for him and can't stop now, but, the medics told my Dad as he wanted to know the truth, as they saw it... hoping they are wrong, rambling a bit now, I guess not wanting to accept my daddy is leaving me slowly....

Thank you all for your help, it will be intense helping him at home, so may not post as much now. xxx

[richard]

Positive vibes I am sorry to read your post. I send my love to you and your family and one big long hug. Thinking of you during this horrible time.

Richard

[Positive vibes]

Positive vibes I am sorry to read your post. I send my love to you and your family and one big long hug. Thinking of you during this horrible time.

Richard

Thank you Richard

I guess I was shoving the reality to the back of my mind, but, can't do that anymore... x

[matthew55]

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

[Mary C]

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

[Gordan1111]

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

[Lynne K]

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

[Ellie]

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.

[matthew55]

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.