Dad just diagnosed

[Shansi]

Hi all,

My 82 year old dad has just (Wednesday) been diagnosed with MND. He has been having swallowing difficulties for about six months, and kept being told by his doctor that it was a sad but inevitable fact of old age. Then his speech started to slur, as though he was drunk, and I insisted on a neurologist referral. We finally got the diagnosis I dreaded, and the doctor wants him to consider a feeding tube, as fully dressed he only weighs 57 kilos. Dad is (and I know it's early days, and he will need time to process this) insisting he doesn't want tube feeding, and if that is the case then we have to accept his wishes.
It's killing me (I am full of whiny self pity right now, but can't express it to dad...), because five years ago my mother in law died of fALS. She had exactly the same symptoms that my dad has, but exacerbated by the fact that she developed dementia at the same time. She refused a feeding tube, and her suffering was the most awful thing I have ever seen.
Is there any advice anyone is prepared to share, or any resources I can print off for dad to look at outlining the advantages of having a feeding tube?
Thanks in advance.
Shan

 

[Nikki J]

So sorry you have a deal with this again and have the specter of FALS with your spouse.

You can search for feeding tube discussion here. It is the opinion of some of us that it is a quality of life issue. It is my opinion that getting a feeding tube is a kindness to your loved ones. It sounds like you already know this. My mom who had dementia/ALS refused a feeding tube. My sister delayed one far too long. Not having one subjects everyone to the struggle to swallow, the choking etc that you have seen. I remain traumatized by witnessing this and have sworn I will get a tube the moment one is suggested. Hopefully once he absorbs the diagnosis he will change his mind.

Good luck

 

[Shansi]

Thank you Nikki. My husband has said that if it comes to him, he also intends to refuse a feeding tube. Given all that we went through with his mother, I am horrified, but hopefully he will think about it again, if....

 

[affected]

Shan so sorry to welcome you here.

When my husband Chris was first diagnosed and I was finding out about this monster, and as he approached the need for a peg, interestingly I felt personally that I would not opt for one.

My Chris also had FTD. He said he would accept the peg, but it would be when he decided he was ready. I watched him steadily losing weight, fearing fluids, taking far too long to eat, but he was adamant he didn't need it yet.

When he finally said it's time, he was emaciated and eating little and very dehydrated. Our speech pathologist kindly fast-tracked the appointment with the gastroenterologist. It didn't take him long to examine Chris to decide he was on the surgery list within the week.

He never adapted well to the peg, partly because his body was already so depleted and in starvation mode, and partly because with his FTD he would not even attempt to get a good routine of nutrition going - even though he could not use his hands and it was all being done by me.

So the peg never assisted his quality of life at that point. I realised in that first month or so after the peg that I would actually accept one, but do it early, because it would give quality of life. It may not extend life a lot, though it will probably extend it to some degree. But to be relieved of the swallowing issues, as Nikki says even for the family caring for the PALS is huge.

He still wanted to take in some food by mouth, and even with the peg ended up with an aspiration pneumonia that really took his overall position down and he was gone a month later. That last month was really hell for him.

Do a search here and you will find lots of great information.

I have however known of quite a few rapid progression PALS who refused a peg and they had a very peaceful passing. It is choice, and the statistics show that most PALS do not opt for a peg.

I think that it is a really important discussion to have with all the information and if your dad does not want a peg, get a plan in place to assist him well with palliative assistance so that he can do what he wants with the maximum help.

 

[Nikki J]

I do think progression rate makes a difference. My mother struggled with swallowing issues for several years, my sister for more than a year before getting her tube. For those with a very quick journey where this phase is weeks rather than months or years and medication for comfort is already being considered the scales could tip in the other direction

Shansi there is reason to hope for treatment for FALS in the not so very distant future especially for sod1 and C9. Your location and your MILs dual diagnosis make me think c9 is likely. I hope your husband is unaffected but even if he is not there is hope for him

 

[affected]

Correction to my last post - I said statistics show that most PALS do not opt for a peg.

That was poorly worded. I have not read any specific study that analysed this.
I have read many articles on sites spanning many years discussing the fear of PALS towards the peg and the resistance to using one.

My MND NSW regional advisor here has also told me that in Australia it is not taken up by the majority. We did have quite a discussion on it not too long back.

Her sister was diagnosed with ALS earlier this year and in the first days said no peg and my advisor was completely at peace with that decision. As it happened she decided to take the peg as she was bulbar onset and the swallowing was so poor. She was 2 months post diagnosis, had the peg and died that night.

I don't want to scare you as newly diagnosed but there are so many variables and no solid patterns to predict anything with this disease.