Slowly moving forward

I’ve had quite the opportunity for thinking in the past 48 hours. I have been in bed, yet again, for an entire 36 hours. Now I’m back up and moving, but my heart is still quite busy working on where I have found myself. As Tim has said many times now, “I didn’t sign up for this.”

When a person’s body is so exhausted that even laying in bed is hard work, then is when you really start to contemplate your life. You have nothing to distract you. So I spent time internally weeping about our situation. As I’ve heard from many people that have experienced the ALS journey in some way or other, I am slowly mourning and moving on. I love Tim so much, and I realize that my time with him is short now. It’s so hard to sit by and watch his body stopping. It’s really enough to emotionally paralyze me.

We have “trained” in a friend that used to be a home health aid. She came over yesterday and today to help get Tim in bed and then ready for work this morning. It is good to know that there is someone that lives close to us that I can call in an emergency. This afternoon, I am meeting with our case manager from the home health agency we are working with to make a more complete care plan for Wednesday nights.

It’s time for me to get organized and be prepared for many people coming in to help with caring for Tim. I am so grateful that we have many people to lean on. But I need to do my job in having our home “volunteer ready.” Tim, on the other hand, will now have to get used to having many different people touching him, including helping dress and undress him. As our friend mentioned this morning, she’s done this many times – it’s us that are new to this whole thing.

So, my next big project at hand is to create a CARE CONTROL JOURNAL for Tim. A working manual for anyone coming over to help with Tim’s care. If nothing else, this will clarify things for me and help me to accept where I am now. Having something to do helps to focus the energy my heart is overflowing with. Otherwise, I am just a nervous wreck.


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