ALS, Amyotrophic-lalteral-sclerosis, or Lou Gehrig's Disease; in a nutshell: was nerves no longer regenerating nor communicating with the brain. Your body just stops working. Depending on the onset, one may live a long life, just aided with a caregiver and wheelchair, or more special equipment as one loses other motor functions. IE; speech breathing, eating, going to the bathroom. The bulbar onset is the "other one" that no one wants. It brings a short life expectancy and possible complications. This is what Mom had. We didn't know it at first, but soon it was obvious.
All in all, there is usually no pain. Mom didn't have any pain except for her bursitis. Possible depression, anxiety as one will most likely suffocate to death, because of the clasping of the diaphragm and lack of oxygen to the brain. Mucus problems as one loses the ability to swallow. Plus more.
I don't mean to sound brash, but these are the facts. And as I held my Mother as she cried over what was becoming of her life, I had to suck it up and give a shoulder that could handle the tears and keep her going as long as possible. Keep going Mom, I wont give up on you!
Here is a link to learn more about ALS: feel free to explore.
http://als-mda.org/disease/amyotrophic-lateral-sclerosis/signs-and-symptoms
After the tears, we needed a plan. We are like that, always planning something. Mom wanted to go out laughing. She asked me to make sure of that. She wanted it to be peaceful and full of love and laughter. No problem, her and I laugh all the time. We laugh at each other and ourselves mostly. Ok Mom, I can do that, make you laugh. Bring joy to your darkening world.
Now: first things first. Mom, (aka Lottie) was using a walker to get around. This was in September 2011. She just could not trust her leg. It was no longer communicating with her brain. So we needed to set into motion things that would give her a better quality of life. That's right QUALITY, not quantity. We were not guaranteed any quantity. So in October, my dad and brother built a ramp for her to use to get into the house and into the garage. And let me tell you, they are hefty ramps!
The garage held the sewing room. Anyone who knew anything about my Mom, knew she could sew. She could paint, quilt, craft, crochet, knit, all of it. And she did it well. Life in the garage/sewing/craft room was fun. Good memories. She decided that she needed to make a few things before she couldn't make anything at all.
In the photo, Mom and Amber are working on baby booties. She enjoyed sharing her skills with her granddaughters.
We made Booties for a Boise State fan's baby girl and a fun Thanksgiving hanging. Mom was happy. Sewing made her happy.
She was also still working at that time. She loved to go to work. It was getting harder to get around and carry items, then she put a "shelf" on her walker so that she could cart things around. (see, crafty!) The people she worked with were family to her. She cried at the thought of having to say goodbye to them. Soon she would need to. It was just too exhausting on her to go in, even when the hours were cut back. But how could she leave "her people?" It was gonna be a sad day. And it was. Sad, that is. She resigned in November 2011. Bummer of a day, but it had to be done. Everyone knew it. That same month, I also resigned my position at work. It was obvious that she needed 24/7 care. She just needed that arm to lean on. She was not safe alone.
Dad continued to work, since I was here for Mom, he was comfortable with that. I quickly received the tag name "Nurse Betty" and took my job to heart. Mom loved to cook and she was the "dutiful housewife." So when she could no longer stand in the kitchen and cook, I did. I admit I am not as "dutiful" but she was a hard act to follow. Again, she could cook or bake anything. She was my "go-to" whenever I had a question on how to make something. We needed to go over the recipes! That was a must. She was a wealth of information that I didn't ever think I would lose! She always fussed and worried over Dad. Her favorite question of the day, usually at breakfast; "What are we (meaning me) making Dad for dinner?" "I don't know Mom, what would you like me to fix?" She was still in charge of the kitchen, I was just the body in there doing what she asked.
Since Mom was always an independent woman, I still took her everywhere with me. Shopping, Banking, Post Office. All the errands and then some, I took her. We started using the wheel chair more and more. I begin to gain a pair of muscles too! All that lifting, putting the chair in and out of the Jeep. We didn't have a handicap van, just their Jeep. Oh and getting her into the Jeep, that was funny too. I told her we needed a "butt lift." Car rides always started out with a laugh and thankfulness that we were not being filmed! She would pull and I would push, then she would slide into the seat, while I was pushing her at the same time. Too funny! Trust me!
November went by fast, at her first doctor's appointment we discussed the reality of what she would be facing in the near future. Items we would need around the house to make life easier for Mom. Hand grips, shower chair, higher toilet seat with side bars, moving the furniture so she could get around in a safer manner. Simplify, simplify, simplify. Nothing lingering around the house to get caught up in her walker or wheel chair. Removing throw rugs was on the list too. No shoes left on the floor. Pick up everything! Keep the floors clean, it was surprising what she would get caught up on.
I ended up rearranging the garage/sewing/craft room three times before it was a usable space for her. Workouts each time! Getting her set up to be able to sit comfortably with easy access to items she may need. She would sew and I was the gopher: I'd go for this and go for that as needed. I ironed, while she stitched. We made a great team and enjoyed our time together. Chatting away like chickens in a hen house. Chitter chatter and so much laughter. This was a good transition, I thought. It is going to be OK.
