The movement that can make or break your spirit

[Tomswife]

What movement do I dread, celebrate, express a sigh of relief? PALS Bowel movement.
We went through a month of gravy. He suffered through the BM on Relyvrio, the big D. We celebrated weeks of nice mashed potatoes. Now I despair the return to gravy.
BM is such a big factor in how our day is going. People don't want to talk about this. But BM has a huge impact on PALS well being and my sanity.

He takes MALOX when the BM takes a vacation. He takes Pepto B when the D visits.

Just venting. I am exhausted. He is exhausted. I hate the lift, and sling. I hate ALS.

 

[Mary2]

Isn't Maalox an antacid? Did you mean milk of magnesia. We used Miralex. Miralex can take a day or two to work. I am sorry you are both exhausted. You are in my thoughts and prayers. I AM ALS is holding some type of ALS Day in May in Washington D.C. There will be an opportunity to put the names of PALS on a flag to honor them for the day and to raise ALS awareness. I think I might do this.

 

[Mary2]

I was thinking about Jim in VA. He once posted that after this is over and some time has passed there will be a quiet pride that we were able to love and work with our PALS through this horrific disease. I have pride in some areas but feel I fell short in other areas. I think you Tom's wife will have pride in all areas. You are there for Tom physically, emotionally and spiritually. Hang in there. Do what you need to do with helpers to go the distance!

 

[Tomswife]

That is kind of you Mary. I dont know how I do this each day. I just now fell asleep on the couch and he called me. What? I thought it was another bedpan call. But no. Just wipe his eyes.
I do get frustrated but never with him.
It is unlikely I can sleep now.

 

[Mary2]

I awoke with a start this morning because I heard Paul call me for something. It was exactly his voice which is amazing. I must have dreamt it. Your doing great to be so patient with Tom! I hope you can sleep tonight!

 

[Tomswife]

You were on alert for so long. I am not surprised you heard him calling. The DC ALS event may be good for you. I hope you are doing ok.

 

[Tomswife]

It is MIRALAX I am using. Not malox.

 

[Doing My Best]

Tomswife, I hear you loud and clear! Same here - Miralax (and stool softeners) when nothing's happening, BRAT diet (PALS can still eat mashed and pureed things) when too much is happening too fast...constantly adjusting to create the magic formula. If it's constipation, PALS is anxious and grumpy and scowling; if it's diarrhea I'm the one by that description, at least on the inside, although I am sunshine personified on the outside. Then there are stretches where Everything Comes Out Fine and life is good! Who knew our lives would revolve around pooping decades after we changed our last baby diaper.

 

[Tomswife]

Our young grandchildren visit often. Ryder is reluctantly pooping in the toilet. Evelyn is a quick learner. So our days are filled with toilet talk.
We had a telehealth with a gastrointerologist, during gravy month. No help. He later told me to take Tom to the emergency room. You don't take a PALS with D to the emergency room. Idiot. Done with that doctor.
So I just use our PCP who is excellent.

 

[Nuts]

In the midst of what you are doing everything is exhausting; I remember all too well. People take poop for granted--until they can't. I was lucky to not deal with the big D, but used everything from Miralax to digital stimulation and manual extraction (yep, had to google those two). I have two stories if I may. The company that the VA contracted with to provide nurses once my husband was vented used to send them to the hospital at their own expense when he went in. I did 12 hours and the private nurse did 12, and it never took long for the hospital staff to appreciate having us there to help. On one trip we had my husband up in a sling hovering over a pan trying to get the BM when a CNA came in to announce that it was quiet hour and only one visitor was allowed in the room at that time. When I was able to speak I explained that the staff nurse had approved what we were doing, but she left and sent the supervisor in. The supervisor took one look and was fine, but I will never forget my reaction to that woman who wanted to enforce quiet hour. The next one is funny. Seriously. Had him up in the sling on a ceiling track headed to the toilet. At that point he could hold the controller and "drive" himself. I saw something on the floor and bent over to pick it up, and as I grabbed it felt something hard bounce off my head. Yep, he bombed me. Boy was I happy it was solid! All I could do was laugh--it's actually one of my best ALS stories. Jim in VA is right--one day you will feel a quiet pride for what you did. We all have moments we wish we could have handled better, but overall, what you are doing is beyond what most people will ever be able to imagine.

 

[Tomswife]

Nuts. Great stories. Thanks. It is our common experience and support that keep me sane.

When PALS says bedpan to me (sometimes its just B), I say...."I love it when you talk sexy to me". He laughs. I try not to let him know that I dread the B word. It seems like it is always before the aide comes or after the aide leaves. But after all these months I can do the lift and sling in my sleep. Sometimes I am half asleep.

 

[mallowmar]

My dad (PLS) just went through a gallbladder drain tube surgery and my mom is now having to deal with A LOT more BM trips.
He just finished his rounds of antibiotics and just recently started using his feeding tube for its main purpose for the first time...so I'm thinking all of this is the sudden 4x a day BM cause?

Having to use the shower/toilet chair in the living room HOPING he will get back to some normal BMs...

 

[lgelb]

Welcome, Mallowmar. Sorry to hear about your dad. Is he getting a traditional corn syrup-based formula like Jevity or Ensure? Those are not very nutritious and hard on the body, so we advise a real food formula like Whole Story or blending normal food in a high-speed blender. That should also cut down on the BMs.

Best,
Laurie

 

[gretatristram]

My husband developed an intense fear of soiling himself and would ask to be taken to the toilet 10 to 15 times per day. Using the Hoyer lift. So that was 20 to 30 lifts. I had a helper, and the lift was a power lift. But it was still a struggle, and it became the main focus of our days for the last two years. Many times he didn’t “go”. I was exhausted, and I DID show my frustration—often it was right at the moment I was putting dinner on the table—and I was sometimes a real b*tch. (“You’re doing this on purpose!”…)

I will forever regret not being able to hide my frustration from my dear man and making him feel bad about something he couldn’t help.

 

[krnNdug]

This is a huge issue for me too. Sometimes it may take an hour to get it going, if it goes at all. It's created pressure sores which never cleared up until I bought a seat pad which cost $100. It works unlike the cheaper ones.