It’s Not About Me, but I’m Important As Well.

Once you enter the caretaker’s role, it seems like everything becomes about the patient. This is inevitable. This also helped me to deal emotionally with Mom’s cognitive loss.

We brought my mother to live with us in September 2012, six months after my spinal fusion back surgery. I was still in chronic pain that necessitated regular pain meds. I wasn’t functioning on all cylinders, but then, neither was she. In retrospect, it might have been a good thing that my senses were dulled. Maybe it made dealing with the situation a bit easier.

I never in all my life had a fight with my mother. This is completely to her credit. While I can be reactive, my mother was easy going, cheerful and light-hearted. This continued, thank goodness, into her Alzheimer’s years. She never developed the anger and violence often associated with the disease. She was often confused and full of constant questions. The repetitious What time is it? was the most challenging. Luckily, I had learned some tools from the Alzheimer’s conference I attended shortly after we took her in. The most memorable tool: the caretaker is challenged with providing a different answer for the same repeat question. That was a lifesaver, and I pass this along to whomever I can. This strategy tasks the normal, judging brain to keep reaching, to create different, yet appropriate answers because the repetition of the same answer will drive a “normal” person crazy, inevitably resulting in short tempers toward the patient, who then is completely baffled by the response. In my Mom’s case, she would shrink visibly from an impatient outburst. I knew she didn’t remember repeating her question, so the onus was on me to solve this situation.

Example:
Q: “What time is it?”
A: “It’s four thirty.”
Q: “What time is it?”
A: “It’s tea time. Want a cup of tea?”
Answer from the patient: “OK!” And now you’re onto tea instead of concern about the time and what they should be doing.

Almost immediately after she moved in, a scary moment gave us a snapshot of what we were to expect. One morning Al shook me awake to tell me my mother was gone. A cold September rain beat steadily on the window. I flew out of bed, checked every room in the house, then threw my coat over my pajamas, and ran outside. I found Mom standing in the driveway soaking wet from the rain. Our dog Lila stood guard beside her and looked at me with a curious mix of confusion and responsibility. Her eyes said I didn’t know where she was going, but I thought I should follow her. Thanks for coming.

Mom was waiting for a ride from Frank Delay, a name I had never heard. I found out later he was a friend of her brothers when they were kids. I brought her inside, helped her to change her clothes, made her a hot cup of tea and sat staring out the window.

What had we gotten ourselves into? We had moved her 900 miles from anything familiar into our world, our 1250 square foot condo. We were way out of our depth, but somehow, that recognition solidified my resolve to succeed at this role we had taken on. I wanted to succeed with my Mom. I wanted her life with us, no matter how long, to be a positive and nurturing experience. I determined to be willing to change myself to suit her situation.

I passed on all the information from my conference to Al, figuring it would be best if we stayed on the same page with our responses. We decided to just live in her world, and I guarantee it made life a lot easier on us, and better for her. “Where did your father go?” Dad had been dead for over a decade. “Oh, he just went to the store. He’ll be back soon.” She would smile and say, “Okay.” I knew a man who was determined to bring his mother back to reality by telling her, “Mom, Dad’s dead.” That didn’t go well, and for good reason. First, it can be upsetting to the spouse of the dead person if they really don’t remember, and it can make a more cognitive person feel incompetent and embarrassed that they would not be aware of such important information. It’s just my opinion as a loving daughter, but I would rather help them in their fantasy—whatever makes them feel safe and loved—and maybe just for a while, able to live in that phase of their life when they had a partner to lean on.

My husband and I struck words from our vocabulary—words like “Remember when . . .?” I had seen her physical reactions. I saw her shrink, knowing that she knew she couldn’t remember, or terrified that maybe she wouldn’t remember something that was evidently important enough to be memorable. At some level, she seemed aware of her situation, her diminished capacity. We never spoke about it or mentioned the word Alzheimer’s. I didn’t want to introduce fear into our household, and I wasn’t sure how she would handle it. This is one exception in life, where ignoring a situation can be the best thing you can do.

She saw a lot of people—people she had known from her past. Most were already dead. Sometimes I dug a bit deeper into her memory lane. I was curious to know how she saw them, how old those people were, what they were doing when they appeared. I think it helped my psyche to approach what was happening to her mind from a somewhat clinical viewpoint, because it kept the emotion at bay. At least in Mom’s case, Alzheimer’s wasn’t a horrible, terrifying situation. She seemed happy as usual, if but a bit confused. It is possible that we assign terrible aspects to this condition because we wouldn’t want to be there. I decided to tell myself, “This is not about me.”

During my “Watch Mom” shifts, I often went outside, sat on the steps of the deck and repeated my new mantra, “This is not about me, this is not about me.” It was not about my frustration, not about the hours I surrendered from my own life, not about having to hold my tongue, not about my missed social opportunities or my embarrassment with words that would pop unfiltered from her mouth in a public setting. It was about her—her safety, her ability to stay warm in the bosom of her family, nourished and cherished. And because she couldn’t do it alone anymore. She needed help and I was the logical one to provide that for her.

She could no longer do her crossword puzzles or word searches, had never been a knitter or crocheter, and couldn’t follow a newspaper article or the plot of a movie. She wanted to engage—constantly. Neither my husband nor I are like this. We both need our alone time during which we read, I write, garden or work on projects, he plays pool or computer card games and sudoku. We’re also sailors, we work out, walk the dog and spend as much time outside as possible.

I don’t have children of my own, and have only owned two dogs, so this caretaking role was the first experience of my life, and I was in my 50s. I strongly disagree with the comparison “it’s like taking care of a child” that I often heard from people. For starters, a parent is not a child, and no matter what they do in the unpredictable journey of Alzheimer’s, you can’t and shouldn’t think of them as a child. This is someone you’ve known all your life. Someone who cared for, protected, and fed you. Changed your diapers, spanked your behind when you stepped out of line. From your perspective, this person has always been “old.” And a child will grow and develop—there is a bright future full of hopes and dreams. Alzheimer’s is a one-way street–the patient will never get better and will eventually die from their illness.

If you are in contact with an Alzheimer’s patient caretaker, be sure to ask how they are doing. Are they getting their own time? Are they eating? Sleeping? Exercising? Are they getting support from an Alzheimer’s caretaking community? As we all have heard many times before, you cannot provide proper care for someone if you yourself are incapacitated or exhausted. Alzheimer’s caretaking is wearing. It is not something anyone should attempt to do alone. If you find yourself in this situation, especially suddenly as we were, reach out to your local Senior Care, ask questions, do research, and get help. Never assume as a responsible child or spouse that you are expected to face it alone.

My husband and I tag-teamed each other once I went back to work parttime. As soon as I arrived home, he took off to do chores or spend time with friends—anything to escape the challenge of living with a person of diminished faculties. Don’t get me wrong—Al loved my mother. She loved him. In fact, she was pretty convinced that he was her boyfriend, though I was never sure if it was actually true in her mind, or just a wistful desire. We just went along with it, because, why not?

It didn’t take us long to recognize that my mother was a wanderer, and would suddenly and very quietly leave the house, hair disheveled, purse over her arm, no gloves, no hat, no matter how cold it was outside. Al caught her at the top of the driveway once, just making the turn onto the street. As long as we were within sight, she was content to stay put, but left alone for a bit, she would decide to “go home.” I slept with one eye open. Basically, someone had to be with her at all times. We left to go work on the boat for about an hour one day in October, and I was a wreck the whole time. I knew she wouldn’t answer the phone if I called. She was fine that time, but other occasions when we had to leave her for short intervals, she would be a little frantic when we returned. When we had our gigs at night, I paid a friend to come and sit with her. That was mostly okay, except for one night when I got a call and hurried home to an icy stillness and a suspicious look on Mom’s face. She had fallen asleep on the sofa and woken up with a “stranger” in the house. It took a while to get her through that one. Thankfully, negative experiences also fade into the past for a person with Alzheimer’s.

One night at 3:30 a.m., I heard her moving about in her room, so I got up to investigate. She was looking for the car keys to give someone a ride somewhere. I pointed at the clock, explained that it was the middle of the night, and put her back to bed. She fell asleep and now I was awake, anxious thoughts jamming my brain with how long this might go on, worn out from the weight of my commitment, unable to make a decision about how to move forward. I finally went to bed about 6:00 a.m. as the eastern horizon glowed with sunrise.

An hour later, the slamming of the front door jerked me awake. I jumped out of bed and looked out the window. Mom was making her way down the front steps. I opened the window and called her back in, then turned to my husband who was still in bed. My decision was immediate.

“We can’t do this. It’s not fair to her, and it’s not fair to us. What if she gets away? What if she falls down the stairs? Anything could happen. We’re both exhausted and she needs professional care.” By the end of the day we had found an Assisted Living Facility back in Indiana, a place where she still had friends, where she would eventually be buried next to Dad.

We packed her up and drove her back to Indiana. Leaving her there was excruciating. I kept asking Al if we were doing the right thing. On our departure day, I sat next to her on the bed in her new “apartment” as she called her room. Al took pictures and then we switched places for a photo with Al and Mom. She put her hand gently on his knee and laid her head on his shoulder. “This is my boyfriend,” she said and chuckled. She looked around at the family photos we had hung on her walls, Grandma’s desk on the opposite side of the room, her easy chair in one corner, all familiar items. “This is nice,” she said. “Yeah, Mom,” Al answered. “You know you’re in the right place, right?” She looked up to his face and smiled. “Yes, I guess you’re right.” I fought tears until we were outside in the car. But she never cried. Not once.

She had lived with us five months. Did I feel like a failure? Briefly–but then I comforted myself with the fact that we had at least tried. The best part was that those months with Mom were the best I ever spent with her. We looked at old photos and lived with her in the 1930s when she was growing up in Norwood Park, Il. Her childhood must’ve been the happiest time of her life. We were also so lucky she was mobile. We took her to the White Mountains in New Hampshire to peek at fall colors and ate lunch on the porch of the Washington Hotel. We took her to see the Nutcracker at the newly renovated Boston Opera House. Al and Mom played pool at the Elk’s Club after Senior Center every Monday, Wednesday and Friday. We often ate dinner out and let her pay as she always insisted. We made the best of that challenging situation, always with her needs in mind. And we had fun—making caretaking fun is challenging, to say the least. Take advantage of every opportunity to have fun.

The Assisted Living Facility was wonderful. She loved it there, and for the first time, seemed to know exactly where she was. I flew to Indiana every couple of months, and through her slow decline, was able to enjoy the last two years of her life. She was always happy to see me, and never cried or complained when I left, just asked me to “come again soon.” She was so utterly brave.

The last time I saw her alive was Thanksgiving Day, 2015. I flew in on Tuesday night and rented a car. My three brothers were expected in a couple of hours, so I took the opportunity to go see her. That night, and for the last time, she was lucid. Though she was bedbound, she sat up and we talked about all kinds of things. I was baffled by the “near-death” report we had received just days before. The strangeness of Alzheimer’s is its most puzzling feature. I left reluctantly as my brothers’ planes were arriving soon. We were all too tired to go back so we checked into our hotel. The next day, the lucidity was gone. I could see she was failing, couldn’t eat and wasn’t mobile at all. We spent as much time with her as we could muster, then went walking in the woods at a park we knew as kids. We ate Thanksgiving dinner together at a local hotel. The last time I saw her, she was running a fever. We all returned to our homes to wait.

The phone call came on the morning of December 1 as we were enroute to Indiana on the Massachusetts’ Turnpike. I was glad to have been spared her last moments. I wanted to remember her the way she had lived her life with vigor and ready for adventure.

To be honest, the weight of responsibility lifted from my shoulders along with a deep relief that finally she was free. She was able to walk and dance and laugh without dissolving into a wracking cough. We went through the rest of that trip in a blurry fog.

It takes determination, discipline and hard work to ignore the negative, accentuate the positive and live life from someone else’s view. I’m not saying at all that we were always successful in this endeavor, but we strove for that goal. And there were huge perks. I got to know my mother as the person she was before she met my dad. I asked her questions about the dances she went to during the war (WWII), places she frequented with her single women friends. She talked about playing pool with the guys—she loved to play pool even though it’s not a thing that old ladies do. I never saw her play pool until she was in the grip of Alzheimer’s. Could it be that she was reliving that period of her life? If so, what a cool opportunity for her.

She always knew who I was—thank goodness. I’m not sure how I would’ve handled her not knowing me. But sometimes I wasn’t her daughter. Sometimes I was her mom, or a sister (though she had only brothers), or a close friend of any age. Sometimes we were 10 or 12 years old. But I was always someone who was close, someone she trusted. And I would repeat the mantra, “This is not about me.”

This is the second part of a multipart series on caretaking for a loved one. I will delve into several aspects of caretaking and why it is one of the most important things you will ever do in your life.

Look for the next excerpt: Switching Gears from Take to Give