My wife has been diagnosed with MND-ALS + FTD

[Dave Kerwood]

FWIW, I think you're making all the right decisions.

Thanks Mike. Sometimes, well maybe always, I doubt myself, I suppose this is what make us human and caring.

 

[Dave Kerwood]

04:00 - All the Christmas decorations, including the tree, are boxed away for another year as per Julie's last instruction before she went to bed yesterday afternoon

At least this is one less thing for Julie to worry about today

Dave X

 

[Dave Kerwood]

My problem is that I cannot speak to any professional without Julie being present in the room, then I am limited to what I can say, OK, I can say it, then the health professionals leave after 20 minutes then I am left with the fall out and for possibly days as Julie remembers the bad stuff.

I can see Julie deteriorating more and more each day, she now stands up to go somewhere then stops and looks physically lost, she forgot what it was she was going to do or where she was going.

Sorry... Here I am, going on and on and on... It is that I can write my feelings ever-so-much-better than I can when talking face to face or over the phone... I don't know why, I just do.

Dave X

 

[affected]

I'm sure that is not true Dave.
You could make your own appointment at her ALS clinic, or with the dietician or neurologist or someone to discuss on her day care day and speak to them about your need to understand all the pros and cons of the decisions.

Talking to a counsellor to help you sort out your feelings all these awful choices would also be done when she is at day care.

At the end of the day it is all totally your decision. We can support you and offer you many ways to obtain information and give you our experiences for further information.

You need some expert advice however in my view to discuss frankly the full details of making these decisions. They know she has FTD so of course they are going to discuss privately with you. Interesting that if she doesn't like something said at an appointment she remembers it clearly. The brain is such a complex thing.

 

[Dave Kerwood]

Morning Tillie. I am afraid it is true...

6 months ago we had a meeting with Julie's FTD consultant so I wrote an email of my concerns, several times I said "Please keep this away from Julie" then the consultant read my email to the both of us at the appointment.

You must have better services where you are as it is like this at every appointment or home visit. I have mentioned to many health care professionals that I am limited to what I can say and not once have they said "Yeah, we can talk alone", not once, they just nod in agreement. So I gave up trying.

And yes, anything bad Julie will not only remember it but she will go on and on about it for days...

I do have another visit coming shortly that I have not had before and this is with the Senior MND nurse (Home visit) that the MND consultant has set up but there has been no date set as of yet.

I have found on many occasions that people can be forgotten here, we sort of get lost in the system and only surface again when I call to find out what is going on.

It's not great I know, but our health system is being cut to the bone.

 

[affected]

Can you not call the MND clinic and make an appointment just for yourself though?
What about your MND association, I think you have a very strongly active one there, can you talk to someone there?

One of your big concerns about the peg was that Julie may attempt to rip the tube out. I'm also still not sure on how things are with you and POA. If you don't actually have that, how will it go if Julie says I don't want a peg? It sounds like you are saying they would discuss it fully with her and she would make the decision?

Your South Yorkshire MNDA would maybe be able to help guide you with information?

 

[affected]

Oh, to add - so far as getting lost in a system - CALS have to develop very thick hides and be prepared to be strong, loud advocates. I very often had to chase things up, even when I was sick of doing so, otherwise they would just 'forget'. As much as it's wrong, it is still true that the squeaky wheel gets the attention.

 

[Dave Kerwood]

I am afraid all appointments are home based other than the MND + FTD 3 monthly reviews, every health worker comes to us, no office appointments are available.

Don't worry about my POA (or lack of) it was my fault , I should have acted sooner. Julie needs to be of 'sound mind' and she was not when I started so no one would witness the POA. The only other option is a 'Deputyship' now, and that costs and has to go through the courts and has to be revised on changes which, again, costs...

Silly me left it too late. This was 6 months ago and Julie has well progressed past the point of understanding then, let alone now.

Dave x

 

[Dave Kerwood]

I have called S.A.L.T and said that Julie IMHO really needs to be on a complete Ensure diet now as this is all she has been on since Christmas day, she agrees and is going to discuss this with the Helen (the dietician) and will get back to me later today if Helen is working today.

Julie is also refusing to drink water no matter if it is thickened or not but does drink thickened tea, about 4-6 mugs a day so her fluid intake is OK. Mind you I think I would give up on thickened water as it does look a lot like wallpaper paste. I have tried coloured glasses to take away the colour of the water but Julie is not stupid. I have also tried adding the tinniest amount of cordial to the water for the same effect but Julie can no longer tolerate strong tastes such as orange, apples, mixed fruit (anyone would think, if watching, that I were making her drink undiluted lemon juice with the face she pulls) no matter how weak it is. I think Julie's taste buds are now hyper sensitive.

Anyway, this is where I am up to today... Maybe Julie's last year to physically eat solid / puréed food. OH well!... 2016, here we come.

Dave X

 

[Deety]

Hi Dave,
I've been thinking of you and Julie over Christmas. I've had a very hard time suddenly becoming the "mother" of my husband and imagine you know that feeling. It feels like I am much more prepared to deal with the physical symptoms of ALS. The FTD, even though ours is "mild" and may not progress, and the resulting change in how I think of our relationship, is really throwing me for a loop. At 8 years old my daughter was more reliable and more help--more of a partner--than my husband is now. And it seems to have come on so suddenly, although now that I look back, I remember all kinds of things.

Anyway, I may be far away, but I hope you know that you can always rant to me and I'll know where you're coming from

 

[Dave Kerwood]

Awwww, thanks Deety...

Julie went from FTD to MND not MND to FTD which is really rare.

I really hope that your husband FTD is slow as FTD is a bigger nightmare when coupled with MND than MND is on it's own as with MND (alone) the sufferer is completely aware of their surroundings, awareness, memories and normal apathy, empathy knows what is inappropriate and what is not.

Unfortunately MND + FTD or FTD + MND sufferers (the latter is our case) not only are we a mother or father to our spouses, we are also having to look after our loved one who went from being 50/60/70 to a small child of 5/6/7 years old.

I would not wish what it is I have been through to my worst of worst enemies (not that I have any).

Dave X

 

[Dave Kerwood]

Oh poop, my message was sent for a moderation (again) Hahahaha... I am sure it will soon pop up here.

Dave X

 

[affected]

Dave what I am asking about in regards the POA is about who makes decisions.

If a peg is considered will the decision be put to Julie and it is up to her to make it?

 

[Dave Kerwood]

Dave what I am asking about in regards the POA is about who makes decisions.

If a peg is considered will the decision be put to Julie and it is up to her to make it?

Hi Tillie...

It is plainly obvious that Julie no longer holds the capacity to make any form of 'real' decision. If the question was asked directly to her I know Julie "at this stage" would not make that decision, she would say "Ask Dave, he will know"

OK... Later this may change but I do feel that my Julie absolutely trusts my judgement and would never think of making a decision like this without my approval.

I do not think that any health care worker or doctor / consultant would even consider what or what not to do based on Julie's decision making at this point, now or in the future.

They all know that Julie and I are joined at the hip, besides not only am I her arm to hold onto when walking, I am also her translator.

We do not have a shed load of money or possessions so there is no worry about who gets what.

I am not making light of the POA. I would actually URGE all folk to sort out their own POA's NOW and not wait too long as I did, as if you follow my example then it gets complicated, very complicated indeed.

Luckily Julie has a family that has left everything down to me (for various reasons) but I know there are many families out there that would not be so considerate...

Ahem....

 

[Dave Kerwood]

Morning all...

I do sort have a 'ping-pong' (up & down) life, there are as many 'ups' as there are 'downs' now... I think I have said this numerous times... "I could not make all this up if I tried", not a normal moment ever happens in this house, there is always some crisis or another to sort out, none of my making I can assure you, I honestly do not know how I have managed to stay sane to be honest, I am a long long way from the Dave that used to be Dave a couple years ago.

I suppose I am learning how to solve the many problems that have been thrown at me in quick succession, especially of late... But this is living with dementia, motor neurone disease, families (especially families) social services and other healthcare problems I encounter on a daily (hourly if the truth be know) basis.


This place keeps me sane, I dump all my garbage here, feel better, then go back to my life as it is now, it won't be forever, I know this. I think when it is all over I am going to be one hell of a lonely person until I adjust. How can anyone with the constant problems, problem solving, writing my feelings & emotions down, again, on an hourly basis to let off steam, then go back to another problem happening too absolute quietness (nothing).

Right now that 'Nothing' seems really scary for me as I have been so used to having problems over the past 2 years, especially the last 12 months, that it seems sort of normal now, so when the quietness comes I have not got a damned clue how I am going to handle that part of the final ride... The only thing I can do, the only thing that is available to me, is to simply let it happen and see what it is I do do.

No, I am not down, I just try and think of every scenario and have thought about this for a couple of months now, like I do (pre-emptive) on & off and have always thought at the time "Dave, don't worry about that for now" but since I awoke this morning I have thought of nothing else... Weird how the brain works when it is not engaged in finding a solution to a problem, it is like my brain needs something to do all the time now and when it is quiet it finds the things that I have put away in my "Not Now" box hidden somewhere in my brain.

Anyway... Time to walk the dog... (I don't really have a dog)

Dave X