Problems

[faithandlove]

Yesterday I had a company come get my trilogy. The alarm kept going off, and the mask was leaking a lot. I called the company to have someone come to the house to fix these problems, but they told me to bring the machine to them! I said no, and they were to call me back, but they never did, and I was without the trilogy for three days due to the weekend. So, I called another company for a trilogy (with approval from my neurologist), got it, and had the other one out of here. This new company is wonderful, and the mask I have now works great. I have a humidifier with it too. They always have someone on call to help with the trilogy.

Today I went to the VA office so that my husband could get a cortisone shot in his hip. He needs hip replacement surgery, but is refusing to get it because of me. That makes me really sad, but he's stubborn.

While at the VA hospital, I had to go to the bathroom, and went into the woman's handicapped stall. They had the bars, but, the toilet was too low and I did not notice until it was too late. I was stuck with the door locked. A woman came in and I asked her if she would get my husband outside the door of the bathroom. She got him and, somehow, he got into the stall I was in. After much effort, he got me up. I put on a brave face for him, but all I wanted to do was cry. It's such a helpless feeling trying to get up on your own, and you can't.

We are so at the mercy of CALS and sometimes they have their health problems too. It's so unfair to them.

Hugs,
Deb

 

[JimInVA]

Deb,

I don't know about your husband, so let me tell you about me. I am the caretaker (CALS) for my wife, Darcey, who has ALS. One of the first indications that we had that there was a problem was while we were out of town attending a Joe Bonamassa concert in Durham, NC. Darcey had problems walking several blocks before the show to meet with friends for dinner. It was crazy. But she was determined to walk and would not let me get the car. Ultimately, we made it. And the walk back to the venue was a bit easier as it was all down hill. After such an excellent performance, we got up and headed towards the exits. Darcey excused herself to use the restroom before heading to the car. Some time later, I was called into the restroom by some caring passerby. After clearing with security, I entered the restroom and opened the stall door. "What's wrong, sweetheart?", I asked. "I can't get up. No matter how hard I try and how I try it, I simply can't get up. I don't understand", she said. "Then let's work together and get you back up", I replied. That was in November of 2012.

It has been quite a journey since then... but one thing remains the same. "Let's work together" has been a recurring theme. It is what has allowed us to make what should be an absolutely terrifying journey, something to be proud of. I don't believe that either of us could do this as well as we have without the love and support of the other. And for as much as we work to make each and every day the best it can be... we each have moments where we give thought to how unfair it is that we find ourselves here. But when we give it a moment and allow the smoke to clear... our minds realign to the reality of what and where we find ourselves. We didn't ask to be here... yet here we are. And from my point of view, there is no "unfair". Rather, there just "is". Or what my esteemed friend Max would say, "It Is What It Is". I suspect that your husband, much like me, feels that there is no better person to be on this journey with you than him (or in my case, Darcey and me). So feel free to cry when necessary... we have those moments. But take that next breath and smile and appreciate that we are not alone. You have your husband... I have my wife... and we all, here, have each other. ALS may determine our destination, but it does not determine how we make that ride. And though we may have our own health issues, we will still do what we can do for the ones that we love. I broke my back some years ago... and have metal rods holding my back in place... yet I didn't care for one moment as to how uncomfortable it was to bear hug and lift Darcey from wheelchair to stair lift. I was only glad that I could. We wouldn't trade what we can do to help our PALS for anything in the world...

My best, to you and yours...

Jim

 

[faithandlove]

Jim,

Thank you so much for your kind, loving response. I don't cry easily, but I cried reading your post.

Yes, my husband is like you, and Darcey and I are two lucky ladies. He would do anything for me.

I love the "Let's work together" theme. I will think in those terms. It is what it is.

Hugs,
Deb

 

[scaredwifetx]

Deb, it sounds like a very rough couple of days for you. I am so sorry you had to go through that in the bathroom. I had a very similar story once when my back went out on me. I was quite embarrassed. My thoughts are with you and hoping things will calm down a little for you.

Jim, I saw Darcey's and your story and video. I think it was on ALS worldwide. It was a wonderful video.

 

[texastc]

EVERYTHING that Jim said. I think we've all been to that place. I was so glad to be able to be there for Tracy. I couldn't imagine being in her/your shoes. I'm sorry...but like Jim said, So very glad to not be alone.

tc

 

[soonerwife]

Very well said Jim! I too would do anything for my PALS. There is no place I would rather be than by his side even with the monster ALS.

 

[bigmark1954]

EVERYTHING that Jim said. I think we've all been to that place. I was so glad to be able to be there for Tracy. I couldn't imagine being in her/your shoes. I'm sorry...but like Jim said, So very glad to not be alone.

tc

TexasTracey had an incredibly positive attitude. It was amazing to me that she worked until the end. She shared a bunch of her struggles including getting stuck in the handicap bathroom stall of the school that she taught at. It would piss her off, but she was resilient to the challenges. She was an inspiration to me.

To Deb's point......I think we are mindful of our CALS health and well being, and what a bind we would be in if something happened to them. I know I would be screwed, and would have to learn how to cook, run the laundry machines, and run errands. I am still pretty self sufficient, I do worry about falling and not having something to pull myself up on. I also worry about not being able to speak legibly and would not be able to yell for help, not to mention that I am so big that it would take 2-3 normal people to help me up.

It all sucks, but I don't need to tell you how bad it SUCKS!

 

[texastc]

Thank you Mark. Very kind words. Her attitude WAS amazing...witness to how important that actually is.

tc

 

[CarolSue]

JimInVA,

We would all be extremely lucky to have you as our caregiver. Your wife is a lucky woman!

CarolSue

 

[KimT]

Jim, Your response made me cry. Do you have a brother?

 

[JimInVA]

I am humbled by the many kind "thank you" notes and am glad to have each of you in my own circle of "together"...

Jim