In July of 2006, Mom started slurring her words. The doctor thought it was just neuralgia brought on by the shingles that she had on her head and neck. But there was also weakness all down the right side of her body, so we were convinced she had had a small stroke. It was only the insistence of my brother and sister that made her go to the doctor again and again for answers. All the tests, which I was not there for, so I'm not sure what they all were, showed nothing. Fearing ALS, Lou Gehrig's Disease, the local neurologist sent her to an ALS Specialist. I remember being at a high school football game when my sister called to tell me that they were "more than 60% sure" that it was ALS. I don't remember ever doing any other investigation into the disease, but I had seen the movie that same year and I knew it was bad. I immediately planned a trip out there to go with them to the specialist for the second opinion, and to help move most of my mom's stuff out of Grandmother's house, to my sister's.
November 10 was the date of the appointment and I arrived a day earlier. When I saw Mom at D's, she seemed to have shrunk and aged 10 years since I had seen her in April. We just held onto each other and cried, and I suddenly felt as if I were the mother and I had to comfort her and be the spiritual strength for all of us. It was such a hard 3 days with the driving and the doctor and the packing. And Grandmother was none too happy with us for taking her scapegoat away from her, leaving her "blind and helpless"!
The doctor did not actually diagnose Mom with ALS. It's a hard one to diagnose---they actually do it by eliminating every other possibility. He said she did have a motor neuron disease (MND), but he wasn't yet sure about ALS. Time would tell. I think she only made one more visit there, as they generally see MND patients quarterly, and after that second one, Mom was too weak to travel all the way to Oklahoma City from Missouri. God bless the man because he gave us so much to hope for that day and made us feel that it was possible to live with this dreadful disease. The harsh reality is that most people don't live with ALS, they die a little every day from it.
That weekend, despite it's hardships was a beautiful time spent together. We talked and laughed about all the old stories. We told Mom some new stories----things we had done and not gotten caught for! It was a time that I cherish.
There were a few more get togethers that year. Mom and D made the drive to our house for Thanksgiving. Mom was already too weak to walk up the stairs, so we got an Aerobed for her to use in the living room. I could already see the toll that this was taking on my sister. She found being in my noisy house with 6 kids relaxing because I was there to share the responsibility for Mom.
We went to D's for Christmas. All 8 of us crowded into her tiny 2 bedroom house! There were people sleeping everywhere. Again, my sister found that having us there eased the burdens on her shoulders. At this point, Mom was using a rolling walker full-time to get around. She was in good spirits and refused to use the "scooter" that her brother had gotten for her. So the kids made good use of it on Christmas Day and Mom found the energy to come out and watch for a few minutes. We all cried uncontrollably when we left because we didn't know when we would see each other again, or under what circumstances. It was the last time the children saw their grandmother. Later, she didn't want them to come visit. She didn't want them to remember her as a complete invalid.
My next trip out was to be there when Mom had a feeding tube put in. Early March? It was getting so hard for her to eat and she decided that she wasn't quite ready to starve herself to death. At this point she was in a real, $24,000 motorized wheelchair full-time. She was able to get out to use the walker and go to the bathroom or get to the car, but that was it. It was also very hard to understand her. As with a toddler, the family can usually understand them pretty well, but others have more difficulty. That's the way it was with Mom; her speech had deteriorated a lot.
She was basically on the edge of a precipice with her mobility. But that's the way it is with this disease, you're walking along the edge of a cliff all the time. Sometimes you manage to maintain your balance for a long time, other times it doesn't take much to push you off to the ledge lower down. Mom could maintain a certain level for about 3 days before she lost some mobility. One day you can wash your face with a washcloth that weighs as much as a brick, the next day, you can't. One more step closer to complete dependence.
That's what happened with the feeding tube surgery. It was harder on her than they let on it would be. She was in terrible pain from this minor procedure. Between the pain and the morphine, she lost all ability to stand on her own. We had quite a time at the hospital with nurses who had no clue about ALS and couldn't understand why she could walk when she got there and suddenly couldn't even stand. They had no idea how to treat her or move her without hurting her. We were learning, too, because we hadn't quite realized how much work Mom was doing when we made tranfers from wheelchair to bed or toilet. It felt like we had been doing all the work, but we suddenly understood that she had been working incredibly hard just to stand for 5 seconds!
The lesson here is: Never, never, never, leave someone who can't speak or move, or both, alone in a hospital! They need constant advocacy and protection.
The feeding tube was not a big bonus and didn't improve Mom's life very much. It only made it easier to give her some of her meds. She continued eating softer and softer foods right up until the last week.
I made one more trip out in late May or early June to give my sister some respite. She was heroically doing all this HARD caregiving on her own. She had even lost her job because of it. That was actually a blessing because she was no longer torn in 2 directions and she had a severance package that would pay the bills until early August. At the end of that trip, the night before I left, Mom decided to have a catheter put in and remain in bed for the rest of her time. I believe she made a couple more trips out for church, but not many. They had started having hospice a few weeks earlier which helped a little.
When I came for the last trip, we had a good first week, spending time with Mom. We talked---and conversations were slow and laborious with her, but she had things she needed to say. One of the last conversations we had was memorable because she took great pains to tell us she was ready to go, she couldn't wait to walk again in heaven.
I massaged her hands and feet and did her nails, which was not easy on either of us since her hands were curled up and couldn't be straightened. Every morning she had her cappuccino to start the day. D and I knew that when the cappuccinos stopped, Mom would too. She loved for us to brush her hair. HARD. I thought I was going to draw blood with her spiky hairbrush, but she loved it and D would have to take over because I'm too gentle. Now I understand how she was starved for physical contact and something that would get her blood flowing.
The last week was the worst. My brother came after I had been there a week. He brought the casket he had built for Mom since she wanted a simple pine box. It was simple and beautiful. That second week of my stay, she suddenly took a turn and we were continually surprised when we found her still with us the next day. But she wasn't at peace and we could no longer understand her. She could only communicate by nodding or shaking her head, but with the oxygen deprivations she was very confused and didn't always make sense. She didn't want her anti-anxiety meds because she didn't want to be loopy. I think she wanted to enjoy having her children all together for the first time in years, even though it wasn't a very enjoyable occasion. After we stopped watching her breathe because the strain was too much, we spent time together while Mom slept in the next room. We reminisced and got to know each other again and it was good.
Sometime around Wednesday, the first of August, she slipped into a semi-coma. Sometimes she opened her eyes if we spoke to her, but there was no other response. When D asked if she wanted T to play his banjo at her funeral, she grunted "no". lol. On Saturday, my sister and I had to get a break, so we decided to go shopping to buy Mom something to wear for the funeral. It was good to get out of the house and get that errand over with. We had planned to wait until after her death to buy it, but agreed that it had been better beforehand.
We went back to the house and put everything away. T left to get something he needed for his truck. We went in and told Mom about her new outfit and asked if she wanted to watch Gilmore Girls. I think the answer was No, because she suddenly stopped breathing regularly. I alerted D, who was on the computer, and we held her hand and stroked her arm as she took her last breaths. How could it happen so suddenly when we'd been waiting for it for weeks? How can it take you by surprise like that? But it did, and our precious mother was gone.
There are so many things that I never learned from Mom. Things I wanted to ask. Things I still want to ask her. During all that, I wished she had taught me about dying. Maybe she didn't know as much as I do now, but I didn't want to learn it from her in that way.
I'll tell you what I know:
- Don't waste time being angry with people. Forgive them. Mom forgave everyone. She didn't have any bad feelings for anyone, she let it all go. In fact, she let them come visit to make amends if it would make them feel better!
- Tell people you love them. Even if it's a girlfriend and seems silly. Don't wait until they're dying!
- There's no use complaining. It doesn't do any good. She never complained about her illness, or questioned why God let it happen to her. She just let Him handle it. And He did.
- Touch the people you love. Touch the handicapped who probably long for physical contact more than you know.
- I know she's still with me. I see her all around my house in her art and in the things she left me.
- I don't have any fears for her soul as she was so faithful and trusted God, but I know that I can continue to pray for her, just in case. I think she did her purgatory here on earth, even if she didn't know she was doing it, I prayed for God to accept it as such for the whole year.