DAD - MND diagnosed now. What next?

[Positive vibes]

That tearfulness is yet another joyful part of MND, called Emotional Lability or Pseudobulbar Affect, and can manifest as laughter too, often at the most inappropriate of times.

Think of it as exaggerated emotions rather than a true reflection of one's mood, and a tearful episode will often turn into laughter. My family are used to this now but when it first started, it was off putting.

Re swallowing tabs: if he has to take capsules, pop one in a spoonful of mousse/dessert/jam, makes it easier to swallow. xx

Ellie

Thank you Ellie. Like many others have said on here, MND, the gift that keeps on giving.... I will mention this to Dad, and that we will soldier on through this...laugh and cry together.

Now, just the mention of chocolate would cheer him up, for taking tablets. Although he isn't going to take carbocisteine in capsules, there are still 5 other meds he does take!

[Positive vibes]

Well, still exhausted from yesterday, despite a better night's sleep...

Went from parents, with appt from OT's, to hospital (Mum's ECG), to dropping her home and checking Dad's toilet frames, to other hospital to drop off her results, to back home, to falling asleep, to waking and walking dog, hoovering, gardening, struggling to keep awake to eat. Early bed at 9pm, but lying awake for ages.....

The great news is that I did manage to speak to OT about concerns: gait, right arm not being used, trip hazards (everywhere), fear of falls, Mum's diagnosis, and that Dad is seeming to give up driving now of his own accord...

Solutions:

Chair risers on legs, plus support cushion for seat (still refuses rise and recline).
Ramps to replace the Heath Robinson bits of wood, etc on rear doors.
Toilet frames on 2 toilets - fitted whilst we were there.
Me - as designated driver.... sad moment....

Not sure what else, but, OT is ringing me so I will ask about a wheelchair or walking aid for Dad (or if he mentioned it?) as he finally agreed to an outing, but, is unsure about how far he can walk.

Today is going to be exciting and exhausting as the contents finally come back from the insurer's, the new bed comes, so will need putting together, and I anticipate Mum getting angry and upset at the stuff not coming back that was destroyed in the fire or irreparable. Since there was no agreement between the parents about the wardrobe situation there is nothing to hang the clothes on. So there will be bags and chaos....

And mustn't forget GP ringing about Dad's meds - have to ask for saline ampoules on monthly prescription, and Carbocisteine in liquid form despite Dad saying its not helping as nurse wants him to persist with it. I see a row in the offing....

Getting a delivery from the Dietician sometime today for more supplementary drinks/powders. I keep wanting to say 'complimentary' for some reason.... maybe I am cracking up at last...

Checking out the dementia advice, we need to get safe-guarding for Mum, and contact social services/adult social care. That will be super fun as she is in total denial now, even though we went to get her ECG yesterday. I was ecstatic she remembered her full address, but, slightly panicked when she tried to remove all her clothes.... to the bewilderment of the attending nurse....! Another blinking disease that 'keeps on giving'....

Need to ring 'the social' people and not looking forward to that. Have to discuss this with the parents and expecting a double no from them....

[matthew55]

Don't forget to breathe 🤭xx

[Lynne K]

Hope that you get some ‘me time’ today, Lynne x

[denise]

Goodness. Would you like a hug?

[Positive vibes]

Don't forget to breathe 🤭xx

Ha! (Deep breathes...)

[Positive vibes]

Hope that you get some ‘me time’ today, Lynne x

Does poop picking in my garden count? I did sit and read whilst awaiting bed/furniture/clothes/contents/GP appt/delivery of supplements....

I can recommend it 'The Midnight Library' by Matthew Haig - all about endless possibilities....made me feel better about the past and the present anyway...

[Positive vibes]

Goodness. Would you like a hug?

I wouldn't mind, ta Denise!

Mum wasn't too bad about what came back, although upset the dressing table didn't make it, they tried to revive it, but, it was 'IB'... and now we have to go through boxes and boxes. About 20 of them. Comparing what they sent back to what has 'bit the dust', and what compensation is still needed...Then there are the clothes hanging in bags... I think she has the hoarder gene.

Tiny snafoo - can't store the linens in the divan base of the new bed. It arrived torn so they have said they will replace.
Can't hang clothes in a wardrobe as there isn't one. Need to get long clothes rail (as they finally agreed) under the worktop/bench thing sorted.
Cannot put towels/linens in the chest that's returned as it needs to go in the bathroom.
Cannot put chest in bathroom until carpet fitters return with tiles.
Annoyed that after we paid deposit, then they said there could be delays, asked before paying (a few days before fitting) if there were delays as stated. This was totally denied. Night before fitting, yes, you guessed it, they rang to say the carpet tiles hadn't come from the supplier. Argh..... when will it all end?

Positive stuff:

Dad isn't losing weight. He isn't gaining, but, he isn't losing. That's good, right?
Said he had another night that was ok.
He is slowly sampling his way through a cornucopia of supplementary drinks/powders. These must be the key to keeping weight loss at bay.

Deep joy!

[Positive vibes]

Up at 5am, which is late for me... (Smug mode enabled):

Put on laundry.
Put out fresh towels.
Put bin out for me and neighbour (mobility issues - her family bring it back in when they get there)
Porridge bubbling on hob.
Dog fed. I know. I am 'rewarding' her for getting up early.... sigh.
Poop picking on the horizon...
Watered plants.
Gearing up to take Dad to LOROS today. He only decided to let me when discussing with Dietician his right hand/arm is practically useless (his words). No real discussion about him giving up driving though.....

Another day which I am determined to extract maximum enjoyment from.

[denise]

As long as there's some positive stuff to focus on. The rest will fall into place.

Thinking of you 😘

[Positive vibes]

As long as there's some positive stuff to focus on. The rest will fall into place.

Thinking of you 😘

Hey Denise

Thank you lovely...

[Positive vibes]

So after my smug start, I got to the parents slightly late to see my Dad sailing past in his car! Doh!

Unfortunately, I forget he gets very anxious, so he felt he couldn't wait until I was there. He gets agitated if he isn't at LOROS on the dot when they open the doors at 9.30am. This is despite the fact that the first sessions don't start until 10am... bless him.... he didn't want to miss his free cuppa! I rang to see if he got there ok (he did) and asked if it was alright if I popped up in a taxi to drive him home. Thankfully he was ok about that too. I figured all the exercise, massage, large lunch, and long day without a nap, he would be tired coming home. Plus I needed to pick up his regular meds on the way back.

As this is only every 2 weeks, I can't see him being able to drive much longer, so I am definitely going to be there on time to take him there and back next time. Stayed with Mum to help her start unpacking the never-ending boxes of stuff from insurer's. Something has obviously registered in her that she has too much stuff, so she immediately started separating things into 'keep', 'car boot' or 'charity'. I was amazed and proud of her, as she has a huge attachment to stuff, and kept asking her if she was sure.

The only snag was, she kept mixing the keeps and sells in a pile. So got my organising head on, armed with marker pens, and shuffled things into the right piles. She kept asking where things were that she was keeping, so, just kept pointing them out to her. The new bed rapidly disappeared under a pile of packaging, and we lost the scissors at one point, only to find them resurfacing again on the shelf behind her... so all in all she didn't do too bad today.

I have emphasised that if she needs to go through the stuff that's going, or changes her mind, to go for it, as I am wondering if she is going too far the other way. About half a dozen boxes of stuff to go out, compared to one box staying. I am hoping she sticks to her decisions, but, worried she might regret letting too much go? She was worrying that there was too much upstairs now, and no room for my brother to stay up there, but I reminded her that we hadn't got the storage sorted yet.

I doubt Dad will have the energy or motivation to go through any of it.

Positives today:

Getting Dad to accept being driven home and no arguments.
Watching 'Jenny' wren flitting to and from a nestbox I put up earlier this year.
No doggie drama from either end.
Talking to neighbours I hadn't seen for a while during walkies.
Sleeping from 9.30pm onwards without doggie interruptions.
Getting the laundry and dusting done before venturing out.
Hearing Dad had got through a substantial meal (soup, fish main, and jelly).
Dad able to get to LOROS safely under his own steam.
Dad is having better nights sleep at the moment.
Mum having a pretty good day, and having a laugh with her, precious memories.

TTFN

[Lynne K]

Great stuff xx

[Positive vibes]

Needed to take time out, as Mum's diagnosis results are finally kicking in to me, confirmed early Alzheimer's although without any vascular problems thankfully. She has agreed to take the meds! This potentially slows down the process of the disease, so, keeps her 'with us' for longer....

A bit of good news finally....

The only downer is she is in denial that there is anything wrong, so, hoping she doesn't backtrack and not take it...

Positives:

Dad seems to be a bit more stable.

Not losing weight/not gaining though.

Accepting mashed food with a spoon, and 'complimentary' drinks/powders.

Still managing to walk dog although not as far as he used to.

Nary a word about driving shhhh....

Just needs toilet frame adjusting, one is ok, but I noticed he had quietly turfed the other one out....

He has agreed (finally) to try liquid carbocisteine after debating it with MND team when he went to LOROS; only half dose though i.e. he doesn't really want to take it.....

Really tired after visitors yesterday, mum's appointment and results, and shifting boxes from the sweatbox laughingly known as the attic bedroom downstairs into the garage.... more visitors today....

Argh the dog is making suspicious 'parping' sounds from the bottom region, I am going to whisk her outside..... never a dull moment...

[Positive vibes]

Another day in chaos-land....

Been to GP to try and get Dad's meds sorted. Still claim there isn't any note from MND nurses (sent twice) on his digital records for liquid carbocisteine. Still can't access GP service on-line myself. Still not had a decision about continuing his Rizulole. I even showed them the letter from the consultant which was sent direct to the health centre about shared care agreement and the need for Rizulole. They did say they'd received it. Just not acted on it ....

I. will. not. swear.....

Rang MND again explaining above. Again.

Dropped existing prescription from consultant for his Riz (via local hospital prescribed) into chemist, should be able to pick up later today. At least that will keep him going until end of July.

Booked GP appt (probably telephone) for Mum as complaining of pain, only to get there and find she had gone walkabout. This is despite me saying I would book her in today, and despite Dad's appointment with home visit (speech & language specialist). She came back half-way through the appt. for Dad.

Dad feeling down as struggled to eat porridge today for breakfast, took him ages, plus handle fell off shower (in on position) so he was panicking and alone knowing therapist coming. He managed a Heath Robinson fix with a long screw after dripping his way into the garage and back. Tried to fix this but the handle in the 'thread' end is bent because he was using a spanner to turn said handle (after refusing to ask OT for help changing handle). So he has rung a plumber instead! Wouldn't let me ring OT as 'they are coming tomorrow', when I thought it was the delivery company only not the OT's - sending leg raisers for his chair and seat pad.

We will see... I may cheekily ring OT's so they just 'happen' to ring to review with him how he is getting on with toilet frames.

Positives:

Feels able to take Mum in car himself for 5 minute grocery shop (although he promised to ring if he felt he couldn't).

Accepted offer of PEG feeding (feeding via stomach direct) and we calmly discussed myself and parents being trained to use it. Tried not to show it made me feel upset at another stage progressing faster than we had hoped. The therapist was good - explained how he may not use it at first, or, use it to hydrate/take meds, or, simply use it for supplements. And how many people preferred it as eating a full meal became too much = losing weight./health/energy. Both because of how long to chew it and how long to swallow it. Plus the continuing mucus over-production which is making him lose his appetite & effecting taste.

She watched him drink water and he didn't cough. However, she immediately knew what he was doing and said so, simply judging by his slow swallow and little grin. Used thickener, which he felt ok with, and said he preferred water not milk to drink. A shame as this was getting more calories in him. But he is getting the thickener and can use it in hot or cold drinks. Advice to fill a jug, add thickener and use throughout the day (get tipper for jug).

Only getting through 1 supplement drink a day (should be 2) plus he should be increasing his food portions and isn't. Advice is simply eat what he fancies and take supplement after.

He 'forgot' to weigh himself which makes me feel he might be losing weight again, but, I am not going to force him or nag him. Hoping the direct feeding into stomach will help him.

LOROS has a shop so may be able to get larger handled or even 2 handled china mug for him.

Not so positive:

Isn't using toilet frames at all as too high for him to have a bowel movement.

Still isn't keen on a rise and recline chair or wheelchair.

Small steps. Things I thought he would never accept - being tube fed, he has. Things I thought he would accept/enjoy, e.g. rise and recline chair, he hasn't.

WARNING: NOT TO EAT NUTS! I happened to notice Dad still had a bag of nuts next to his chair and casually mentioned this to therapist who paled slightly and said that this is the only thing she wants him to stop eating. These are the most high risk foods he can eat, so, he isn't going to eat any more. Didn't want the substitute of peanut butter on bread.

She said she won't tell him not to eat dry, flaky food - cake, pastries, pies, but to affectively submerge/blend these with custard, cream or gravy for savoury, as we still want him to be tempted to eat....

So, a bit of a mixed day...