A nine-year goodbye

Margaret was a pianist and voice teacher who relished food and friends, but Alzheimer’s disease robbed her of those pleasures. Over a nine-year period, as she slipped further into her disease, her daughter Susan said “goodbye” to pieces of her mother’s personality as they disappeared.

Although her mother’s death left an emotional crater, Susan cherishes the time they had together. This is how Susan described their long goodbye about a year later:

“My mom was one of these people everybody liked. She was popular and vivacious. She always had a take on life that was unusual or made you think in a different way. I learned early on that she was a wealth of information. She had a natural ability to put her finger on an issue and know, ‘This is what it’s really about.’

When she was in her early 70s, my mother would forget things, but I’d think, ‘We all forget stuff from time to time.’ Alzheimer’s started to rear its ugly head when she was around 75. I’d say, ‘Let’s go and do this,’ and she would reply, ‘What are you talking about?’ And I’d say, ‘Mom, we just talked about this five minutes ago.’ Then she would start to wander. She’d leave home and couldn’t remember how to get back –- or even why she was out.

I moved back home, to her apartment in the Bronx. That was fine for awhile, but then I needed help and had an in-home aide for a couple of years. Then my mom became belligerent, so I started searching for a 24-hour, seven-day-a-week place. The nursing home I chose kept the seniors occupied; my mom would get up in the middle of the night, and they’d have a drawing class at 3 a.m. She spent the last five or so years of her life there, and I was able to visit before and after work.

Maybe because we were so close, I could sense when an aspect of her personality was about to disappear, and I think she did, too. Whether she would press my hand, give me a hug, or put her head on my shoulder and look at me, moments later some portion of her would finally go. It was as though on some level, she was trying to convey, ‘I am moving on to something different, and we need to recognize that so its passing is easier.’

Every six months to a year, you could count how many people my mother stopped recognizing. I was the last one. It was about a week before she passed away, and she had not been physically well. I remember the last time she looked at me with recognition. She squeezed my hand, and I said, ‘It’s OK, Mom, I know.’ Sure enough, within a couple of hours, she had no clue who I was.

About halfway through the illness, she could no longer play the piano, which was a big loss because she used to do that every day. She could still enjoy listening to music, but she couldn’t identify with being able to play or even remember how music is made.

My mom also began losing the ability to taste things. She couldn’t tolerate many solid foods, so she ate mushy stuff and needed someone to spoon it to her. She loved chocolate to the bitter end, so I’d bring a Hershey bar and make sure it was soft enough to gum down. That would be her evening treat, and then she’d fall asleep. Even on her last day, I brought her some chocolate, and she had a little nibble.

I kind of instinctively knew that was probably the last time I would see her. I whispered in her ear that I loved her and said, ‘See ya on the other side.’ She died at 5 o’clock the next morning.

Our final goodbye was quite natural and felt like the right time. I was somewhat relieved that she was going somewhere where everything would be restored to her. I think the saddest moment came earlier, when we realized we didn’t know how long this illness was going to last, that it was progressive and that she would deteriorate. We had a series of conversations about what she wanted, and my mother was adamant that her condition not interfere with my life. She said, ‘If it gets too wooky for you -– that was a word she would use –- don’t be afraid. If you need to put me into an institution, don’t feel like you’re doing something wrong.’ She always said it was important that I move on with my life.

I’ve incorporated my mom’s spirit in my life, so I don’t feel she has left my universe. When I’m in trouble or feel anxious, something she might have said comes to mind, and it’s almost as if she is trying to tell me something. I miss having someone I can talk to without fears or reservations; she was the only person I could tell anything to and knew it would be accepted without judgment. I only hope she felt the same way about me.”

Consider this …
Being open about serious illness and dying can make the end easier.