Alzheimer’s is tough. It’s losing a person before you lose them forever.
It can be a swift loss or a gradual one. Ours was a gradual one; our Mom started to forget where she put things or events that happened or were suppose to happen. She got anxious, then depressed and one day stopped functioning. Shortly afterwards, she stopped talking altogether.
We were a family of seven, and although 4 out of her 5 children were girls; our bachelor brother became her caretaker. The females in the family were all married, had jobs and families of their own. Our brother lived in the house with Mom and Dad and although he worked, too, he provided her daily care which included hiring a caregiver to come in during the day. Our mom was always freshly bathed and powdered, attired in clean clothes with a quiet, calm presence.
Our father wanted her at home; he had promised her she would never go to a nursing home. Once, after a surgery, just after her decline, she had stayed briefly in a nursing facility and visibly and emotionally suffered from that experience.
Throughout the 10 years of her illness, she was silent, calm and and good natured. My brother always set a place for her at the table for family meals and she was always part of our family get-togethers, smiling at times at all of us. On Dad’s 80th birthday, we had a party for him at a restaurant and he insisted that she be there at his side. She was silent but smiled when she recognized someone. She was always at his side.
Just once, about 9 months before she died, as I was preparing her a meal one night, she said clearly, “I’m going to eat dinner now”. What a nice gift that was. Every now and then, she would look at our Dad and brother and say their name or a full sentence. They were her mainstays and those were nice gifts.
Reading the above, it sounds like a sad scenario, but it truly was not. Our family was a support system for each other. We girls would stop by with groceries or other pick-ups and fill in when my brother was not there. The older grandchildren would Nana-sit if my brother had to be away overnight. When he walked In, he would be greeted with a big smile from Mom; he was her only male child and also her first-born. He always made her laugh and comfortable. I would join my brother to take Mom along a trail in the woods in October because she so loved the fall colors. Other outings were country rides in the summer or just a pretty park in the spring. She would smile and seem to enjoy it ~ silently.
We all tried our best to keep life as normal as we could. That’s what I remember the most about the 10 years my mother was cared for at home.
My Dad also took care of her the best way he knew how, and the care-giving he provided did take its toll on him. He also received the wide smiles whenever he walked into a room where she was. He would talk to her just as he always had. She had always told us in earlier years that she had to outlive him because he could never get along alone or without her. . She did just that when he passed away the year after his 80th party. She became noticeably unhappy and distraught and she followed him just 5 months later. She had done her job and outlived him as she planned to. Somewhere in her mind, she felt the need to do just that.
The afternoon of the night my mother died, I was on my way from one appointment to another. I was going right by the hospital where she had been for a few days. I cancelled both appointments and stopped to see her. They had moved her to a single room. I asked the nurse at the nursing station how she was doing and the nurse told me she was ‘unresponsive’. When I walked into the room, my mother tried to sit up and smiled with her whole face. I hugged her awhile and went out to the nurse to order a TV for her. The nurse said it wouldn’t do any good – she was ‘unresponsive’. I asked the nurse to come to the room with me and she saw my mother repeat her welcome smile. The nurse was quite surprised. Mom never got the TV ordered for the next day, she died that night. She was 79.
Although something unexplained and undefined has been taken away from Alzheimer patients, there is something within them besides not being be able to communicate. They try to….but stop in frustration. It is frustating at times for all involved. We all treated her as if she understood eveything, and kept her in a normal routine. She got attention, love and care. We were blessed with the caregiver who treated her like a Mom. Her behavior those last 10 years was a higher level than the few days she spent in the nursing home. I am not criticizing nursing homes; they are important for those who have no families or someone to care for them or have different symptoms.
Having dinner with my brother one night some months later, I expressed how grateful we all were in all he had done for our mom and dad, sacrificing a long portion of his life to do so. And I’ll never forget his answer: “I would take them back right now in a heartbeat even in the condition they were at the end.”
I can see my mother smiling down on that one. I’m sure she felt it all along.
Marie Coppola © February 17, 2014