Dealing With an Alzheimer's Patient
My Personal Experiences with Alzheimer's
Helen Keys, a small Irish woman was born in 1920. She married a John Yaletchko, and had three children: John, Joan and Stephen. Following their divorce, Helen married my grandfather, a tall Italian man, Salvatore Montalto II. Helen went on to raise three more children: Linda, Deneen, and my father Salvatore Montalto III. She continued on to have double digit grand children, and several great-grandchildren.
My grandmother in 2009 started showing early signs of Alzheimer's Disease, a form of dimentia that slowly destroys the person's brain, starting with memory and slowly progressing to the rest of the brain. In 2009 my grandfather had passed away from lung cancer that had spread throughout his body,and I was only around 12, very confused and sad about the situation when I was told that my grandmother age 89 would be moving in with my aunt and we would be selling their house in the Pocono Mountains because she couldn't be by herself. This was confusing to me because for all of my life, every time we visited the mountain house or she visited us towards Philadelphia, she was always doing odd chores to help, or taking care of everyone else. I had no understanding of Alzheimer's, and so I refused to believe that this woman couldn't take care of herself.
Over the next six years her Alzheimer's would progress from the occasional name slip, to not knowing who any of her family members were or where she was. I took the initiative at many family events to sit by her side, bring her coffee and sweets, and try and keep her mind from wandering into confusion. I quickly found that the mornings and the afternoons were the worst, her fear and confusion would heighten, and if she was left to think about it she would get panicked. That panic would lead to sadness, and she would cry, then moments later forget why she was crying, which led her to be more confused. I also realized she never really forgot us, she just couldn't relate the face to the name or family member. She often called my father "Stephen" or "Champ", both of his brothers, and I got many of my cousin's names before she finally hit "Sammy".
One of the happy parts of Alzheimer's was when she was happy, she would continue to tell us old stories, which we would hear on a constant loop to the point where we could practically recite them. Her stories were all based around events in her life, but every time she told it, something would change and it would slowly get more exaggerated and eventually it was the Hollywood movie equivalent of an historical event. She'd often look at us all, and proudly say "You know, they can't kill the Irish, we just float away," and smile really big happily sporting some sort of green. Another thing was for some reason she never truly forgot how to play the card game Rummy. She wouldn't remember the rules when you introduced it to her again, but as soon as you got a few cards into the game she sure as always, would get right back into the swing of the game she had played for most of her life.
And I found out the cardinal rule of Alzheimer's: the afflicted won't get upset if they are occupied.
With this new acquired knowledge, I knew how to handle the situation far better than I had before. I avoided asking her if she recalled anything, and constantly saying the phrase "Do you remember?", I would keep her busy by listening to her stories, and answering her broken record questions, and playing rummy. I found whenever she would overthink and start to get upset, I'd bring her a cup of coffee, extra sweet. Just how she liked it. I'd regift the candy she had handed me the minute before but she had forgotten about, and she'd respond with "Oh, you're so sweet! I'm going to save it for later!" And then receiving the same butterscotch a few minutes later.
As the years progressed she'd get more easily upset and I'd be there to try and sooth her. It was simple things, like leaving her after you visited the nursing home, that really upset her. After a couple of visits I finally told my family to tell her one by one, you were just going to be going to the bathroom. At least in her mind she would be happy as you left, and she ultimately forgot you were even in the room. I figured it was better to have her happy, than to tell her the truth and have her horrified, confused, and crying.
The years continued and the Alzheimer's progressed so much that she often found herself forgetting simple words and then getting extremely frustrated at not being able to recall. She soon forgot that we were related, but she would still love to sit and talk to us anyway, telling us her loop of stories and asking us simple questions, laughing and smiling.
As we visited her grave Easter of 2016, we started to reminisce on stories of my grandmother, and my sister told us her interesting perspective on the disease. She agreed how horrible it was, and that she spent more time confused and terrified, than she did happy and smiling, but she told us that she saw it as an interesting opportunity to see our grandmother as no more than a friend we truly cared for. She continued to tell us that she didn't see us as our grandchildren, just as visitors that looked familiar, and yet she continued on to tell us how sweet we were, and how beautiful the girls and how handsome the guys were. My grandmother didn't say this because she had to, she said it because she genuinely saw us each as beautiful, and interesting individuals. Looking back now I realize that, and I too cherish the new relationship I had with my grandmother.
My grandmother's Alzheimer's continued on for six or more years before she eventually spent a week and a half on hospice, following a paralyzing stroke at the age of 94. She spent a week and a half on the 'do not resuscitate' list, without food or water and eventually passed away in February of 2015. What astounded me most about the death of my grandmother wasn't that she had fought so long and hard, and pushed through a week and half on hospice before finally passing, but that nurses who had finished their shifts came to mourn and pay their respects to my dying grandmother. In the short time my grandmother had been in this nursing home, she had impacted these nurse's lives so dramatically that they broke down in tears, walking into the room to a small Irish woman in a coma.
To this day I still miss her, and I hope she looks down on me, watching, taking care of me, and being proud of the man I'm becoming.