Novelist | Singer
The next day I had an appointment with Mom’s financial advisor. Dennis was a trusted family friend as well. He had known my mother for twenty years. He listened quietly to my story, then said something that would change my life, and my relationship with my Mom.
“You know, you should consider taking your Mom to live with you. Legally, she can pay you for her care, and no one can provide the kind of care you could for her.”
I was frozen in place. Seriously? How could I possibly take my mom to live with me? Suddenly, I was the daughter whose mother lived with them, slippers, robe, shuffling back and forth to the bathroom. I could feel my legs start to tremble. I had just had major back surgery. This was too much. I thanked Dennis and left.
My brain was Jello on the drive back. How could this be happening? On the other hand, how could I take my mom to a place she had never been, drop her off and drive away? I lived 900 miles away in Massachusetts. But the decision was not mine to make alone. There were three of us involved. I called my husband, Al.
He listened to the news I’m sure he didn’t want to hear and then said something remarkable.
“So, what do you think?” I asked.
“Bring her home,” he said. Those three little words were like a magic salve for my heart. I had never loved him as much as I did when he uttered them. I could feel my temperature start to rise and my heart racing against my ribs. It was like I had been plucked out of my reality and plunked down in someone else’s. I was elated and terrified at the same time. It was so brave of him, but I knew in my heart that he was right. Dennis was right too. No one could give her the kind of care that I could, even though I wasn’t a caretaker by nature. I didn’t have kids, had never cared for a sick child or an old person, had never even been a candy-striper. But I was her daughter; in fact, her only daughter. No one would care about her as much as I would. I stiffened my back and tears rushed into my eyes. It was time to be an adult. Time to grow up.
The next several days were a complete blur. First, there was Mom, who really had the last word on the matter. This was the most difficult part for me. I knew that I wanted to shelter her from the words “dementia” or “Alzheimer’s,” although no one had said that yet. I sat her down in her apartment.
In the preceding three days, I had been introduced to a person who was not quite my mother, but yet my mother all the same. She looked exactly like my mother, but there were things that had changed about her. She seemed absent in some way. She had a child-like air about her, like suddenly, 80 years had been taken off her age. I knew I had to temper my approach. At the same time, I had to make hay. She owned an entire apartment full of stuff – bedroom set, dining room set, hide-a-bed, kitchen full of dishes and cookware, pictures on the walls, clothes in the closets. I was glancing around, knowing that would be mostly my job. My impatience simmered just under the surface.
“Mom, we have a decision to make. The Rehab unit said you can’t live alone any longer. So we can either move you to another place or you can come to live with me.”
“I want to stay here.” She looked down and slowly picked at her finger nails, then looked back up at me.
“Mom, that’s not an option. Either we can move you to another Assisted Living place, or you can come to live with me. Those are the only options.”
She dropped her head again.
“I want to stay here. I’m fine.”
“Mom, you can’t live alone anymore.”
“Because you have trouble remembering things now, and it’s not a safe situation for you.”
”Ah, phooey,” she said. (I’ve always loved that word. I smiled a bit.) “Who said that?”
“The Director of Rehab. They told me that you can’t live alone anymore, so we have to move you. Now there is a choice: we can move you to another assisted living place, or you can come to live with me.”
“Why can’t I just stay here?”
I was getting frustrated. Little did I know that this was just a taste of things to come.
“You can’t stay here. The Director of Rehab told me that during their assessments, they decided that you shouldn’t be living alone. So, do you want to move to another place in Ft. Wayne, or do you want to come and live with me?”
I paused and put my hand on hers, and she looked up at me.
“Mom, I want you to come and live with me. So does Al. He said on the phone that he wanted you to come and live with us.”
“I guess I want to come live with you then.” It was settled.
When I look back on it, this was one of the most difficult conversations I had with her surrounding her condition. She always made it easy for me, as was her style. I had anticipated resistance, or the demand for an explanation about what was wrong. She never put me through that. All I had to share was, “Your memory isn’t too good anymore, so you can’t live alone.” Perhaps she just didn’t have the capacity, or perhaps she knew more than she was letting on. This came up again and again in our journey through Alzheimer’s. She seemed to have the sense that she wasn’t all there and needed help, because she accepted it so gracefully.
Mom did have one test to pass before we could think about bringing her home. We live up 27 stairs, and Mom was 88 years old and recovering from a hip replacement. She had to be able to climb those stairs or she would be trapped in our house once we got her there. I took her down the hall and said, “OK, Mom, now when you see your doctor, you can’t tell him about this.” Sometimes, loss of memory is beneficial. I took her cane away from her and put her hand on the hand rail.
“Oh, boy,” she said. “I don’t know if I can do this.”
She looked up the stairs with trepidation in her eyes.
“I just want to make sure you can climb stairs, Mom. You don’t have to go far, and I’ll be right here.”
She slowly lifted her good right leg, placed it on the next stair, and like nothing, pulled herself up. One by one, she climbed the entire flight of stairs, gripping the handrail like a baby bird, struggling for balance. I was cheering her all the way. At the top, I turned her around, and she descended the stairs with the same amount of ease. She was ready.
I started packing that day. This became the second time I moved my mother. Two years earlier, I had moved her into Independent Living from her house of thirty years. Oh, she had been resistant, but only for a short while. My mother adapts well. Thank God.
I was largely on my own with the packing. Mom just couldn’t help that much. She sat in a chair reading a magazine, or followed me around as I sorted and folded clothes, trying desperately to establish the pile that would go to the Salvation Army.
“I like that shirt. Let’s keep that one.”
“Mom, you can’t take it all. You won’t have a big closet at my house, so we have to pare down a bit.” I felt like a cruel parent. I started waiting until the afternoon when she fell asleep for a reliable hour or so, then I would fill garbage bags with clothes and set them outside the door.
Some of the journey was fun, and would have been better if I had been able to get out of my own way. I was so freaked out about the enormity of the task and getting it all done, that I forgot to wax nostalgia when I could. I realized much later, for example, that I had left her button tin in the apartment. Her button tin. Do you have any idea how many years are amassed in one elderly woman’s button tin? My reasoning at the time (when I wasn’t in a clear frame of mind) was that Lutheran Life Villages (my mom’s independent living facility) said they would deal with anything we left there, and I figured that all the women there would be thrilled to get a button tin from my Mom. I hope that was the case, because I’m still sick about that button tin. And these are the things that we remember.
My brother Jon was moving to Ft. Wayne from Phoenix, AZ to take a new job, just as we were moving my Mom to Massachusetts. That came in handy for both parties. He took the furniture, so it worked out amazingly well. I’m sure he felt a little abandoned, and she was confused.
Packing, packing, packing. We all know what that feels like. Packing, packing, packing, packing. You can never have enough boxes or newspaper or bubble wrap, whatever your chosen packing material is. And for those of you bubble wrappers? Newspaper is just as good. Honestly. It compacts better, and it’s easier to crumple than bubble wrap. AND it saves you a bunch of money. Well, a bit of money. But I was raised in the Midwest, and we’re really good at saving money.
Just as I would feel we were done with something, I would open another closet or visit the storage cage she had in the basement and realize I wasn’t even close to being finished. Altogether, it took about three days, but it seemed like weeks. Meanwhile, my husband Al had packed his own bag and started the long two-day drive from Massachusetts to come and fetch us. He stayed with friends in Pennsylvania halfway, and the next day, arrived to our chaos. Having him there was wonderful. He is my monitor. Without him, my German persona just takes over and pushes me to work until I topple over. That’s the way it had been until Al arrived. I was already emotionally strained and physically exhausted, but when the monitor came on the scene, I started resting more. We went out to eat. We had some fun at least once a day. We rented a trailer and packed it full.
Then, suddenly, we were done. I finalized paperwork with the facility. Jon was planning to stay a couple more days and finish moving the furniture out of her apartment, and we hit the road early one morning and headed east.
I saw the movie “Forget Paris” with Billy Crystal and Debra Winger a long time ago, and much of the plot escapes me, but I do remember in detail the scene where William Hickey (Debra Winger’s father Arthur) is riding in the back seat of their car, reading every sign on the road out loud, regardless of the banality of the subject matter. “McDonalds, over 10 billion sold, Dunkin’ Donuts, Kentucky Fried Chicken, Finger Lickin’ Good,” Arthur went on and on. The scene was very funny, but I was skeptical at the time. Does that really happen? The answer is “yes, that does happen!” In fact, it happened for almost 900 miles in our van. I’m not sure if that is a symptom of Alzheimer’s, but it certainly is a sure way to drive your fellow passengers crazy.
Another thing she wondered out loud was the number of trees, or trucks, or anything numerous that she could see through the windshield.
“Look at all those trees! I wonder how many trees are in this state?” or “Wow, are there a lot of trucks! I wonder how many trucks are in this country?”
Our logical minds tried not to listen to this almost constant chatter of unanswerable questions, and mercifully at some point, she would fall asleep. For the entire trip I sat in stunned silence, glancing in the rear view mirror at my mother’s face and all of her possessions and wondering if I had made a huge mistake. Then, I would feel guilty for thinking that, which would occupy another hour or so of the trip, until the next unsolvable inquiry came floating from the back seat.
We stayed that night in Pennsylvania with Al’s friends, and everything went just fine until about 2:00 a.m. Mom would get up in the middle of the night at least once. Al was sleeping upstairs in another bedroom, but I slept with Mom because I knew she would be confused when she woke up, and I didn’t want her to fall or end up outside. She was groaning in her sleep, so I wasn’t getting much rest, and suddenly, she started to get up. I got up, too. I took her to the bathroom. Then, she started complaining about pain in her side, and when I checked, sure enough, she had a full-blown case of shingles. I had seen it several days before when it wasn’t so extensive, and just assumed it was some benign rash. Plus I was too busy packing to deal with something else.
We stayed awake for the remainder of the night, because Mom was too uncomfortable to sleep. I was worried and exhausted, and the minutes crept by until dawn. When Kaye got up in the morning, I asked her about a doctor or clinic we could visit. She was a star. She called the walk-in clinic, who would see us that morning. The doctor took one look at her torso and confirmed shingles. We picked up the medication, having lost only two hours, gave Mom a dose and hit the road. Luckily, the medication made her sleepy, so our second day was quieter than our first.
I dozed on and off that day in the front seat as well. Both of us had lost hours of sleep the night before. We eventually pulled into a truck stop for treats and bathrooms. I was still getting accustomed to how closely I had to monitor my mother. We both went into the bathroom, which had several stalls, and of course, I finished more quickly than Mom and exited the bathroom to find something in the store to eat. I paid for my purchase and went outside, where Al was topping the tank.
“Where’s your mother?” he asked.
“She’s in the bathroom.”
“OK, I’ll get her when I go in to pay,” he said, and turned to the store. I gladly climbed into the van and rested my head back on the seat.
Suddenly Al came running out of the store.
“Did Mom come out here?” he asked. He looked frantic.
“No. Let me check the bathroom.”
I ran inside, my eyes darting through the aisles and flipped open the door to the bathroom. It was empty. Now I was frantic. The bathrooms were off a corridor that led from the store, and at the end of the corridor there was a back door to the truck parking. She had to have turned the wrong way. I pushed open the door to the outside parking lot, but it was empty except for several trucks parked on the far side. I walked hurriedly around the corner of the building, and, there she was. A large man with a waxed mustache, tattoos and a ball cap was leading her to the front of the store where the gas pumps were located. She was chatting away at him about all the trucks, and he answered her in gentle, soft phrases. Whew. I thanked him and took my mother by the arm. Already I had messed up. Could this be considered negligence? Was I really up for this? Luckily, the guy was nice and cared about the little old lady wandering around in the truck parking lot. In fact, over the course of the coming weeks and months, I would discover that many people are concerned about and wonderful to old people. With my heart still in my throat, we climbed back in the van and drove the rest of the way to Gloucester, MA. Our life as a trio had begun.