On the outside looking in.

[littlered]

Our close friends are fighting the same battle you are all fighting. My PALS friend is also fighting a battle with her CALS husband over nutrition and weight.

At her PCP appointment this week, she found she's lost 21 pounds in the past three months. Additionally she was told she has diabetes and PCP wants her to start on pills. She told me she'd rather the diabetes get her instead of the ALS.

CALS and their son have had a difficult time accepting the diagnosis she received over 2 1/2 years ago. The most recent example is they took her to a "nutritionist" who told them that she needed to lose the fat so he could help her rebuild muscle. Cut out the carbs and fat and go on the Paleo diet. What? PALS is very aware that the lost muscle cannot be rebuilt. This guy had them taking pills every hour to flush their system etc etc etc. All I see is her looking thinner to me every week.

Our cousin's wife passed from ALS and while we weren't in the same town to support them, the biggest advice he gave us to pass on was to stay ahead of this monster and eat, eat, eat. Unfortunately CALS is still in denial and doesn't get the "stay ahead" motto.

After reading all you so generously share, I am aware how important it is to keep the calories up and have attempted to have discussions with them regarding the importance of high calories and that high calories doesn't necessarily mean sugar. CALS is against the high calories as he's been told she'll get better with proper nutrition by idiots not familiar with ALS. CALS also wants her to try to keep walking as he has the "use it or lose it" mindset. I haven't been able to overcome that one either, but that's another story.

My husband and I have been discussing this as PALS confides in me. We are discussing if we should attempt some type of "intervention" and sit CALS down and have a conversation about PALS eating. Their son is pretty useless in providing any assistance for them, so it's basically just us who are giving them support.

So my question, should we interfere and sit the PALS and CALS down to discuss this? How would you take friends meddling in your business? We don't want to alienate them nor do we want to damage our 25+ year friendship as we plan to be there for them for the duration.

Thank you, Cindy (littlered)

 

[affected]

To be sure I'm following correctly - are you saying that PALS is disagreeing with the approach and understanding the CALS is taking? Or are you saying it is you and your husband disagreeing with the approach both are taking?

I'm so dismayed to hear how she is being mistreated medically!

 

[littlered]

Tillie, She (PALS) is dismayed at how her husband (CALS) is handling her nutrition. I've shared that she should eat 2000-3000 calories a day to maintain weight. CALS doesn't want her to gain weight, just muscle. That leads my hubby and I to be dismayed as well, as we witness it every weekend (we have cabins next door to each other and I cook dinner for all of us on the weekends). We don't want to overstep the bounds as we truly are on the outside looking in, but care greatly for both of them. Regardless, we aren't going anywhere.

 

[Nuts]

OMG. So she knows better, but allows her husband to endanger her by insisting that she act like someone who does not have ALS? Does he not believe she has ALS or does he refuse to become educated about it? Or is he trying to end her life early? I know that sounds harsh, but he is endangering her.

If you have known them for 25 years, how do you think he will respond to an attempt to educate him? How does he treat his wife when she tries to educate him? Has she asked her doctor to talk to him? It seems like that might be a safe approach.

As for the diabetes, it can make life a lot more difficult if it's uncontrolled. Several people have reported here that as the ALS progresses their A1C stabilizes, so perhaps that problem will resolve itself in time. In the meantime, I would certainly try to head off an additional complications by treating the diabetes.

 

[affected]

Thanks for clarifying Cindy.

What an awful situation, but I have met some CALS who have no real idea of what ALS is and what they are doing.

I think you have to intervene, but just how is the dilemma, and you are already at this point.

I think that it may be really important to have a medical professional of some kind there so that you have this backup. Can you start by getting your friend aside and explaining to her that you are very concerned and would like to help her husband become educated, and suggest either an appointment with her ALS clinic or with a dietician that understands ALS?

The tricky part may be to organise this and get her husband along. Gosh my head is spinning trying to write this and imagine how I would have felt as a CALS if someone had tried to do something like this. Forget that I was not in denial and was getting him excellent medical attention, just thinking about how I would feel - threatened as to my capacity and my right to look after my own husband as I saw fit. As you seem to realise this is really the biggest hurdle. If the husband and son get their backs up, they will simply ignore any information you give them regarding any approaches to nutrition and her body weight as they will have emotions in the way.

Can you approach it that your actual friend the PALS has asked you for help in researching her nutrition and you have come to share what you found? Now this means you do have to take along some facts with you, but I think something in writing for you to leave behind is really important as it may take a little while for the CALS to take this in after you are gone.

I wonder if you may decide that it isn't so important if the husband resents you forever for this, it is more important that you give your open support to your friend who has ALS.

I don't know if I've ever written a post here that feels so totally rambling and vague, but I can't quite find a better way to express myself either.

 

[littlered]

They have an interesting dynamic. She has a me, me, me type of personality that has only gotten worse since diagnosis. He is just a nice guy and is already burned out and they haven't even gotten to the difficult part yet.

Nuts and Tillie, I truly think he is in denial. They are religious people (we are not) and have been praying for this to get better. We've tried to bring up issues over the past months, but he hasn't reacted well. Like we are rushing things or butting in. Her voice has changed and I've noticed she's coughing on water sometimes. She told me that she has changes in her throat. She told him, he said - no you don't. I had already guessed.

We will see them tonight and I'll feel the waters. I will print out some of the information here and leave it for him, although that will be next week as I don't have a printer where I am. I'll look for smoothie recipes and your sticky on staying a step ahead.

I know she will talk to me when the guys leave the room, so I'll be able to get more details. Thank you both for responding. I really don't want to look like the nosy, busybody neighbor, and hesitated even posting, but I sure don't like what I'm seeing.

 

[affected]

Best of luck, please keep us posted.

No matter what ends up happening there, I think you should post here all you need. After it is over for her, you will have some comfort knowing that you weighed up so carefully any thing that you did do, and that your views were confirmed here and understood.

If she aspirates and ends up in hospital with pneumonia the swallowing issues will be addressed. Again, NOT the way we want to see this happening, but it isn't like they can get away with denial and the crap of praying for a healing for very long. This monster will do it's work and crises will arise alerting health professionals.

I just want to thank you for caring enough to even consider poking your nose in, let alone that you are going to try! At the end of the day too I've always found you can devise a rough plan, but then you have to adjust it a bit as they begin to react as sometimes you get reactions you don't expect, or worse than you thought.

 

[lgelb]

Red, you're such a good friend. Does the PALS' doctor(s) know what the husband is doing and why?

I kind of go back to the professional intervention, maybe at a regular clinic or office visit where someone w/ a medical degree whom you have briefed previously says, "I couldn't find any literature where the weight loss and muscle overuse helped, but a great deal where it ended life sooner. That's why all the guidelines published by experts call for maintaining or adding weight and not exhausting yourself with exercise your muscles can't tolerate any more. Is it your goal to die as soon as possible? Is your paperwork to that effect in order so I can add it to your chart?"

Let them protest that prayer will prevail, etc. -- most docs have heard it and can deal (most commonly noting that gods expect humans to do the heavy lifting, surely, else no one would be faced w/ ALS in the first place).

How old is the son? Can he think independently of the husband? Perhaps if he had reason to believe that he was helping to hasten his mom's death he might pipe up?

Sorry if this sounds flip but I can't imagine watching someone who still wants to live, starving, preventably, of this disease, in the name of any rationale at all. I just can't.

 

[4tloml]

Cindy, it is a fine line to walk--wanting to help but not overstep. The other responders gave so much good advice, all I wanted to add was that my PALS is overweight, but one of his neurologists at clinic told us the ideal BMI for someone diagnosed with ALS is 30. That is considered obese, she said, but studies have indicated that trying to keep the weight up is one of the most critical determinants of longevity and 30 BMI is the most favorable place to start, and to stay as long as possible. My husband's BMI is 37, and the pulmonologist wants him to lose a little, but the neurologist said if he loses anything, it should be extremely slowly. It sounded as she she'd just as soon him not.

Don't know if that helps, but it seemed like a concern with them was getting her weight down.

Wishing you well as you work with your friends, and wishing them open spirits.

 

[affected]

It's totally true - having a high BMI is good for PALS and so is eating a high calorie diet.

My Chris was a good example, he consistently lost weight, would not eat barely half the daily calories he needed, and add to that his injuries from falls, well he had all the cards stacked against him to have any real quality. Even after the peg he would not take in enough and his digestive system became unable to tolerate even trying to get enough calories in.

 

[gooseberry]

I am wondering if she atttends clinic. If so do you know her doctor she sees? If so I would consider the following....calling the office and speaking with the doctor or coordinator expressing concern about the weight loss and the need to maintain weight for ALS patients. I would ask if an appointment with a dietician familiar with a diabetic ALS patient could be offered to them.

I know it sounds intrusive. There was a time when my sister was dying that my bil gave her way too many meds and claimed confusion and brought witnesses to the house trying to get her declared incompetent. I had to call the doctor that time.

/When situations are about life and death you must do what you are able to do. Have the discussion with them. Bring a printed ALSa booklet on diet from the website, talk about glucerna 1.5 for peg feedings. The need for high protein smoothies. If this doesn't work I would call her doctor.

 

[Barbie]

You could also cAll the local alsa and see if they will contact them. They should b able to do that and give them information and pamphlets. I think it would be a littl cintrusive to call her doctor u less she indicated that is what she wanted. s

 

[Barbie]

I Am not religious either, but I think faith is a good thing for those who have it so prayer is greAt to give them strength and hope. I just hate the idea that it will change anything

 

[affected]

I agree Barbie, faith is one thing, going against what has been shown to be the correct care for a PALS and then expecting some god to work a miracle is well ...

Cindy, did you see them last night, how did it go? (I may be off base, being in Australia is tricky to get the time frames right)

 

[littlered]

Rather interesting dinner last night. The diabetes diagnosis really has her worried. She admitted that she's eaten everything sweet she could get her hands on for the past 3 months in anticipation of not being able to eat one day. I didn't notice any coughing when she drank water last night and eating was no problem. I gave her plenty of mashed potatoes! We discussed high calorie, low sugar foods she can eat to keep her weight. I'll have to add stuff to their shopping list so he gets it.

She commented she has clinic in the next couple of weeks and is going to make a list of questions for the doctor relative to ALS and diabetes. She asks me questions often about what I read here, so I think I have an opportunity to send her some questions for her to ask. They will both be present and hear the same thing. Proper nutrition and a PEG are a couple.

I don't want you all to think there is major abuse here. He is not depriving her of food, just not feeding enough of the right type. I know, that can be abuse too, but I believe he has the right intentions, however misguided they may be. They have always been more reactive than proactive people. I'll just try to get him back on the right track if I can food wise, and hope that I'm not crossing the line.