My wife has been diagnosed with MND-ALS + FTD - Part 3

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Dave Kerwood

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Joined
Nov 29, 2015
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717
Reason
Lost a loved one
Diagnosis
12/2014
Country
UK
State
South Yorkshire
City
Barnsley
Thought I would come back and update...

Things have not gone too well. Julie is now at 46.3lbs. The good news is that she is having her PEG fitted on Friday.

So much has happened over the past couple of months with her FTD + MND/ALS.

All I can say is that the MND/ALS is loosing. FTD has taken a back seat although highly prevalent.

Dave X
 
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Welcome back Dave.

Weren't you worried Julie would pull a peg out?
I'm glad for your sake you have this organised - it will make it easier to give her palliative care meds and keep her a little hydrated.

She is already in starvation mode, which is something that goes along with ALS very often. She probably has no appetite and does not want to try and eat or drink much because her body is shutting her digestive system down - again part of ALS.

You will find the peg is a snap to use, but you will possibly find that it makes her very nauseous if you give her much, and you may have to gravity feed very slowly to prevent this. Probably already she feels nauseous when she takes much into her stomach and tries to avoid eating. This is again a very common affect of ALS.

A possibility may be to have a slow overnight feed happening. If she tolerates this and doesn't pull the tubes out in bed, it may get more calories in. Possibly though you are doing this more for palliative reasons - just to improve her quality at the end stages by getting some calories in and keeping her hydrated?

Her weight is certainly very low, my husband was a similar weight at the end, and for a man that's pretty bad. It's such a struggle to accept the terminal nature of the disease isn't it? It does help a lot to do that however so you can give true comfort or palliative care to the ones we love.

Big hugs, it's a very tough road, especially with the FTD in the mix as I know all too well.
 
Evening Tillie..

Everything you have said I can agree with sadly...

I am flogging a dead horse and to flog a dead horse is what I have to do to get a month or two or three out of the old girl...

I mean this in the nicest sense, just how I feel right now...

I must do what I have to do at this stage which is to keep Julie alive maybe for my own selfish reasons...

Dave X
 
Are you planning to do overnight slow pump feeds or gravity feed through the day?
 
Hi Tillie. You write "She probably has no appetite and does not want to try and eat or drink much because her body is shutting her digestive system down - again part of ALS". I was not aware of this (I am learning every day I come on this forum). I thought the lost weight was due to the vicious cycle of ALS destroying the muscles, poor chewing and swallowing, decreased energy output causing decreased appetite, etc. I was not aware that ALS slowly shuts the digestive system down! I thought smooth (involuntary) muscle was not affected? Great advice to Dave though.
 
Hi Tillie. You write "She probably has no appetite and does not want to try and eat or drink much because her body is shutting her digestive system down - again part of ALS". I was not aware of this... I thought smooth (involuntary) muscle was not affected? Great advice to Dave though.

I'd like to know more, too. My understanding is that, no matter the disease, the organs in a dying body begin to break down. I hope to learn more soon.
 
Dear Dave, I'm sorry to hear of your difficulties. I have been thinking of you and Julie since you signed off. hoping for you that you see some improvement with the PEG.
 
Dave, if you have the insight that keeping Julie alive is for your own reasons, not hers, you might consider that subjecting her to an invasive procedure with attendant pain/risks/confusion is not really in her interests and thus perhaps ultimately not in yours. A good palliative care service and your obvious devotion/diligence can keep her comfortable as is, for the duration.

In the States, most facilities have an ethics officer of some kind and though clearly it's late in the game, as I would for anyone in your/her position, would suggest a conversation with such a person before you dive in on this.

Best,
Laurie
 
Bucky it isn't so much that ALS directly does this to the digestive system, but more as you were saying.

Chewing and swallowing difficulties mean it takes more energy to consume a meal and therefore uses more calories just to eat. The enormous energy it takes for the smallest of tasks with the wasting of the muscles means you need to take in heaps of calories right from the start.

If a PALS begins to eat less, the digestive system responds over time by slowing and having more and more difficulty in dealing with more. At a certain point the body actually enters what is called starvation mode. Reversing this is difficult (not impossible) and takes a real commitment from the PALS. That's why I was asking if a very slow overnight pump is the strategy Dave is taking. I think Julie was sleeping well at night a few months ago?

It's a bit like pain - ALS doesn't cause pain in a primary way as the sensory nerves are not affected. But the effect of wasting muscles pulling joints tight, or immobile limbs pulling on joints, or core and neck muscles wasting causes huge pain.

Dave, do I remember right that you don't have a POA for Julie? How did they get someone with such profound dementia to make a decision like this? I'm just curious as you have been gone a while and so much has happened as you say.

In some ways a peg can create a lot more new problems at this advanced stage than it solves, especially since I thought from before, that Julie really had no idea she is even affected by ALS.

Please do keep us updated mate.
 
Good morning and thank you for your replies.

yes, it has been a while since my last visit and a lot has changed, mainly in Julie's health and mobility. I will say it as it is and in the fewest amount of words highlighting the answers to the questions above.

Julie still sleeps all night (12*-14 hours)
Julie still thinks there is nothing wrong with her
Julie has lost a huge amount of weight
Julie has no idea how much weight she has lost, she cannot see it
Julie has absolutely no understanding what is going to happen if she keeps on loosing weight
Julie wants to live forever
Julie does not want to die
Julie is horrified if I suggest that she may die sooner than later if she does not eat.

So, as you can see nothing has changed from the last time I were here other than Julie is now a bag of bones and skin.

It is not me making the decision for the PEG, well right now it is but Julie has an appointment with the doctor on Tuesday 3 days before the scheduled PEG fitting to asses Julie's capacity to give the go ahead.

I have done all that I can to keep my lovely wife alive, it is now up to the doctor and Julie.

Yes, I was thinking on the terms of a slow overnight feed as Julie is now pretty much incapable of swallowing her Ensure and is physically choking and complaining of feeling full all of the time. It is like Julie's body wants to shut down, lay down and die without letting Julie know...

Anyway, I hope this helps to explain where we are right now.

Julie does not want to die, I do not want Julie to die. All I can do is to carry out the wishes Julie would have made if she were able to before dementia. ALS is slowly taking away the right to live but Dementia is actually killing her.

Dave X
 
Thanks for that thorough update Dave, we ended up asking lots of questions!

Does that mean the doctor will sit Julie down and explain the procedure, risks and benefits or that he will be assessing her capacity to decide? Does Julie know this is all about to happen?

Do you think she will leave the tube alone? Do they put a button in straight away over there or start with a tube that hangs out for the first 6 weeks or so?

Dang, I seem to just ask lots of questions back, but I'm trying to catch up on the past few months ... welcome back btw :)
 
Hi Tillie...

The appointment on Tuesday is to cover everything that you have just asked me, the button is fitted later and as you say 6 weeks later.

I do not think Julie can pull her tube out as she has absolutely no strength or dexterity in her hand / fingers now.

I am using treats to try to convince Julie to have the PEG fitted, like driving 5 hours to her daughters house in May to visit for a few days. I am also explaining that she will never have to physically eat anything again if she does not want too but can if she feels she can. The benefits for myself by not having to say "Please drink you Ensure Julie" a hundred times a day and that fact that she will not have too if on a night feed.

Most of the family have decided to come on board now, well since the PEG thing as I sent a text message to all of them saying that their Mum is dying and she needs a peg and it is up to your Mum to decide at the end of the day. I also explained that with or without the PEG fitting the outcome is inevitable and that I believe their Mum has only months to live.

If Julie refuses the PEG fitting with the doctor then it goes higher (I have no POA) and a panel of doctors will decide what is best for Julie with her diminished capacity to understand.

I will respect the doctors decision whatever it is but I will fight for Julie as Julie would have fought herself before dementia kicked in.

I know my lovely wife will be taken away and very soon, I want her to have her last few weeks / months to be the best.

If I thought that Julie would be unhappy having the PEG fitted then I would not continue, it is just that Julie has said NO to everything over the past year or so as it is easier to say NO than think about the question for an answer.

Dave X

PS... I don't mind the questions...
 
What a lovely morning...
 

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Morning :)

Julie is still fully mobile and must have fairly good balance to sit in a little folding chair!

Is there another entrance to your house as that doorway doesn't look very wheelchair friendly if you keep Julie alive longer and she becomes quadriplegic, I'm certain a pwc won't get through it. Maybe the other entry is level and wider?

I can understand you want Julie to have the best last weeks/months.
It may help you to see the full picture of things too if you read some threads in the PEG forum here.

The PEG is simple day procedure. Having said that, every procedure has risks and not every PEG insertion goes simply. They often tell you there is a 'bit of pain' for 24 hours. For many that is true. For many that is far from the situation and pain needing opiates can last for many days.

Strict stoma care in the first 6 weeks is critical to prevent infection and proud flesh forming, so you will need Julie to fully cooperate in allowing you to clean as directed.

Not trying to be a negative nellie, just want you to have all sides of the information so you are not caught by surprise. They treated me Chris like he was just being a cry baby when he had continued pain after the PEG. He had a very high pain level tolerance in fact. I would think - yeah right, just punch a hole through his stomach and of course it shouldn't hurt at all eh!
 
Hi Tillie...

Folding chair... I put her in and when it got time to move it was a case of putting my arms around her pits to lift her up. I cannot pull her up as if I do then she will immediately suffer muscle cramps.

The front of the house has an extra wide door and ramp so exiting the house is OK. Julies Occupational Therapist has said to us that they only cover 1 door not both.

I understand everything that is involved in a PEG fitting, I am the research guy at the end of the day, nothing gets passed me.

There is only 6 days left, if the PEG fails to be fitted for whatever reason that I will give up mentioning it. I really have had enough of trying to keep Julie alive.

By my last statement is in no way that I have given up on looking after her, I mean that I can do no more to try and extend her life other than be there for her.

I hope this makes sense...

Dave X
 
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