A New Path

On my original blog, http://blog.donnavancleve.com/ , I'm currently journaling my recent trip to London. We took our time while we were there, but it was still hard to soak it all in. I remember feeling like I wanted to re-invent myself while I was there. And circumstances at home have contributed to that. My position as school librarian was done away with, but it wasn't a stressful loss because I wanted and needed to be home helping take care of my mom who is in her 41st month of ALS/Lou Gehrig's disease. She lost her ability to speak over a year ago, but she can still communicate through writing & hand signals. She walks with a walker now, and only for short distances. We use a portable push wheelchair when we need to. We applied for a power wheelchair, but were denied because she is still walking some. The disease is progressive, though, and unless God chooses to miraculously heal her, she will eventually be in a wheelchair when out of her bed during the day. 

Gangy holding her most recent great-grandson August

Her throat and lungs are our biggest concern because this type of ALS paralyzes the tongue and the ability to swallow as well as weakens the function of her lungs to breath and to clear them. She gets the majority of her nourishment from liquid supplements fed through a stomach tube, but she still eats some soft foods, which increases her chances of choking. She's faithful to do what the doctors tell her; she wears a vest that vibrates her chest to loosen anything that might be collecting in her lungs; she wears a mask at night that helps force air into her lungs; and she received a new machine this week that will help her cough and clear her lungs. 

My parents and I on the porch of our new house, November 2009, five months before Mom's symptoms began

Mom is a trooper, though. She never complains or feels sorrow for herself. If she's able to do something herself, she'll do it. Her sense of humor is intact. She is the most selfless and courageous person I know, constantly thinking of others. She has the best memory in the house, and keeps my dad and me straight. My heart breaks for her and what lies ahead, but we try to focus on the good and not the bad. We're thankful that she's not in any pain. We're thankful that she can still communicate with us. We're thankful this disease didn't strike years ago. We're thankful that the dog she bought me for my birthday loves her the most and stays beside her throughout the day. He's brought her such joy and laughter, although he isn't without his own issues.

Snickers in his centerfold pose

Snickers was a part of the 140+ dogs living in a hoarding situation in Bastrop last year that has been in the news off and on. He's deaf and has poor eyesight. He has severe separation anxiety issues and tends to tear things up when he's by himself. He was adopted twice and returned twice. But he has the most loving heart and sweetest personality, and it didn't take him long to steal our hearts. 

Hot wheels grandmas in San Antonio with Mom, Nelda Watson, & Mary Blood

Looking back we see so clearly that God's hand has been guiding us and providing for us, especially in moving my parents to Central Texas closer to doctors and hospitals. And I have no doubt He led us to the house we're living in, which is such a good fit for us in so many ways. We're so thankful for His love and care, and it's such a comfort knowing that He will guide us through the days to come and give us the strength and grace to travel this path.

A New Journey

Finn, his Nonna, and Mom in March, 2007



Around April of 2009, only six months after my parents moved to Taylor with me, my mother began to slur her words in the evenings. We made the connection that fatigue seemed to bring it on, and doctors' tests ruled out stroke or complications from diabetes. After a while, the slurring began to take over more of Mom's day, showing up as soon as noon, so after some painful tests, a neurologist diagnosed the problem as myasthenia gravis (MG), an incurable auto-immune disease. She had tested negative for it, but the doctor said that about 25% of patients with MG do. We were relieved to learn that it was not usually fatal, and medicines would be able to correct her speech.

Like most everyone who is handed a strange diagnosis, we learned everything we could about MG, and the doctor started her on a treatment that should've improved her speech. It didn't. So the neurologist scheduled aseries of infusion treatments-- very expensive and very time consuming-- four hours a day for five days. He said if it was MG, she would show an immediate improvement. She didn't.

Several months passed by and Mom's slurring began to encompass the entire day. On July 15, 2010, the neurologist put her through some more painful tests, and with the collaboration of another doctor, they came back with a different diagnosis: ALS or Lou Gehrig's disease. We were devastated, as we knew this was a fatal diagnosis. When Mom first started slurring her words, I remembered that an Internet search turned up ALS as one of the first hits, and I was so relieved to learn she had MG. But she didn't.

The first week was the worst-- we were mourning losing her, and she was still with us. The following morning after the diagnosis, I took her to the beauty shop-- her usual once a week visit, and tried to act normal when nothing felt normal. When I picked her up, we both started crying, and Mom would just wail every so often. I'd never heard her cry like that, and she was trying to tell me it was the disease that made her more emotional and that it was hard for her to stop once she started. She's always been the strong one in our family-- strong for everyone else, and I told her that when something deeply saddened me, I would wail this uncontrollable sound-- that was just normal for me and most everyone else. And I told her it was okay for her to start acting like the rest of us. : ) It's time we were strong for her.

So now we started looking up everything we could about ALS, and my brother found a lot of testimonials about the connection between Statins (cholesterol medicines) and the symptoms of ALS-- muscle weakness, dropping things or falling, speech slurring, difficulty swallowing. My mother has taken cholesterol meds for nineteen years. We read that Statins depleted COQ10 in our bodies, and that doctors were supposed to be prescribing that along with the cholesterol meds or it makes the body susceptible to the damage free radicals can cause, which can lead to auto-immune diseases such as MG or ALS. A number of the adults in our family are on cholesterol medicines, and none of us had been told that.

Mom said she'd rather die of a heart attack than ALS, so she stopped taking her cholesterol medicine. I noticed that my ankle or knee had been giving out when I get up or walk, almost making me fall, so I cut my cholesterol medicine in half and started supplementing COQ10. My legs haven't given out since.

Then on day six after the diagnosis, I learned that a good friend of mine had lost her mother suddenly, and my perspective changed 180 degrees. I realized I still had time with my mother, so I began to look at this time as a gift. I started recording her memories and stories. I treasure each moment I have with her. I still have moments of intense sadness-- and when I need to, I let myself cry on the way to work or on the way home from work, but not around her. I'll save the mourning for later; I don't want her to see me depressed and debilitatingly sad during the remaining time I have with her.

About a decade ago we had a scare of losing her when her heart rate went so low that she passed out, and they immediately put a pacemaker in her chest.  Her father died of heart problems in his fifties when Mom was around thirteen years old. My mother is almost 77, and I'm so grateful she's lived in this day and age of medical technology that saved and extended her life.

She told me several years ago that if something was to happen to her, to know that she has lived a good life and has enjoyed every bit of it, and that her family has been the best part of it. I really didn't want to hear her talking about death back then, but now I'm glad we can say whatever needs to be said. And I want to leave nothing unsaid between us. We all need to be able to talk about the future and plans, including our own funeral plans and where we want to be laid to rest.

Now ALS feels like an unwelcome guest in our home. We know he's there and what he's planning to do, but we refuse to let him steal our joy. Mom's humor is still intact-- she's a hoot to be around. And she's still queen of the kitchen, thank heavens. I'm the dish-washer and floor mopper. It's getting harder to understand some of her words, and we're looking into a device that will help her communicate more easily. I know people are uncomfortable about that; I am, too, around individuals that I don't understand. But Mom refuses to hide at home (like I probably would), and she'll keep on going until she can't. She's amazing.

Mom and Dad went to Branson, Missouri, with the Church's Primetimers group last month, and they had a ball. She loves parties and game nights, and makes it a point to attend those, too. She still volunteers at the hospital one afternoon a week, and the sweet lady she usually works with has had to take a leave of absence to take care of her husband. Mom learned that the new woman's husband had ALS, so she knew exactly what Mom is going through. She told us where we need to get plugged into-- a support clinic in San Antonio that was a huge help to her. We recognized a divine connection through that. I love how God loves and tenderly cares for my parents.

And we now know why He put it on their hearts to move up here to Taylor with me, although it was hard pulling up 40+ years of roots in Cotulla. They miss Cotulla and their friends and church, and their bodies will return there when their time on this earth is through. But in the meantime, they've jumped in and become a part of this community and church, and will continue to live and work and serve here until God calls them home.

How do people cope without the hope of being with their loved ones after this life? I'm so glad death is not the end, but the beginning of life how it was meant to be.