My mom has Alzheimer’s disease. It’s not who she is, but it’s what she has. Who she is, is an amazing 83 year old retired elementary teacher and college professor, who was married for 62 years to my dad, who died a few years ago from Parkinson’s. Who she is, is a world traveler, who spent summers with my dad exploring other countries, sharing adventures, and making memories. Who she is, is a grandma who snuggled babies, and created personal monthly book clubs for her grandchildren. Who she is, is a champion of the rights of the disabled, having raised a daughter with Down’s syndrome to live independently into her 50’s. What she has, is a terrible disease that has robbed her mind of being able to think clearly, remember things, process words or have conversations. What she has, is a disease that has stolen her dignity, leaving her in diapers and wearing bibs. What she has, is a brain that no longer regulates emotions, leaving her lonely and vulnerable, but sometimes explosively angry. She has Alzheimer’s disease, and it’s a horrible process to witness.
Also living with me is my amazing 25 year old daughter Lian, who has Asperger’s syndrome. She is brilliant, but doesn’t always get social cues. Her brain is very literal. She is a black and white thinker living in a household of grey. This kid. I texted her recently to remind her to ‘lock the door’ when she was leaving for work, only I typed it wrong, and texted her to ‘lick the door.’ She texted me back with “I’m trying to understand why you want me to lick the door.” Seriously, you couldn’t figure that one out?? But she can’t. Welcome to my world. ☺ She doesn’t understand why Grammie asks the same exact thing 25 times in a row, and gets frustrated when that happens on a daily basis. Some days on an hourly basis. I get it. It’s not the same Grammie she has loved and adored for 25 years.
So here I am right in the middle of Alzheimer’s and Asperger’s. But because I’m a little bit forgetful and a little bit awkward, I understand both of them; and because I’m a social worker, I often play the referee. So yeah, it’s fun at our house.
I get random texts from Lian, which are often cryptic, as that’s how her brain works. For example: “When you get home tonight, you’ll need to apologize to all the neighbors.” “OK babe, I need a little more information. What’s happening at home?” Turns out, mom went out to get the newspaper off the front porch (yep, she is one of 4 people who actually still read the printed news), but the delivery person hit the bottom of the steps instead of the porch. Mom went down the steps, picked up the paper, stood up, and couldn’t remember where she was. So instead of just turning around and coming back up the stairs, she walked up and down the street knocking on doors, asking people if she lived there. Lian was in her bedroom upstairs when that was happening, and when she came down and saw the front door open, she went to find her. Another day I got this text from Lian: “Um… not entirely sure but what do I do if Grandma peed on the carpet? There is a trail leading from her room to the bathroom. It’s a wet trail and I noticed because I don’t have shoes on…” Yup, I toggle between Alzheimer’s and Asperger’s and there’s never a dull moment here!
Mom came to live with me a year and a half ago. She was living alone in a very large home in Florida, and not managing well. Her symptoms either came on very rapidly, or she masked them well for the 3 years she provided 24 hour care for my sister and my dad before they died. But it quickly became obvious that it was unsafe for her to be alone. After discussing it with family, we decided that she wasn’t yet ready for placement, and that she would come live with me. Lian gave up her bedroom so mom could be on the main floor of our little bungalow. I had the bathroom remodeled to make it handicap accessible, and filled her room with antiques and her belongings from long ago, hoping they would trigger positive memories for her. The kids and I flew to Florida for Christmas, with the plans to have her fly home with us after the holiday.
Mom knew she was coming to live with me, although reluctant to leave her home and belongings. To say she is a hoarder would be an understatement. (She became even worse at hoarding after her diagnosis, but that’s for another story). She had bags of hangers, boxes of candles burned down to one inch, and every toy, game, book and DVD that we’d ever owned. We found in the desk drawer, oil change receipts from the last 50 years, for cars that have long been gone. Hoarder. At any rate, I was able to get mom to understand that we could only take what would fit in two suitcases as that’s what the airline allowed for her. I knew we could come back in the summer with a truck for more things if needed, but for this trip, we had two suitcases. She would ask things like “Can I bring my Christmas tree?” “Mom, will that fit in your suitcase?” “Ok, how ‘bout my television, can I bring that?” Again, will that fit in your suitcase? And then it occurred to me, that here’s this kind, amazing world traveler, and the sum of her 83 years of living has come down to what she can fit into two suitcases. Humbling. For both of us. How do you choose from a life time of trinkets that represent memories, photographs, and your favorite books? How do you determine what item is more important than the next? Do you take your baby’s christening outfit, or the photo of your husband? Your old tap shoes from high school or your mother’s wedding band? Two suitcases. Your favorite dishes? The urn containing the cremains of your daughter? Two suitcases. Alzheimer’s is a horrible disease, and it’s hard for both of us, in different ways. The good news is that for mom, in the near future, she will be confused to the point of not really understanding what’s going on. She will be in her happy place in her mind. But while my mind may be old and tired, it’s hard for me to forget the unkind things she says to me. Things she would never have said if it wasn’t for the Alzheimer’s. Intellectually, I know it’s the disease talking, not her. But on an emotional level, this whole thing really sucks.
Every day at our house is a new adventure in Alzheimer’s. When I’m tired and frustrated, I try to remember that I have more than two suitcases, and I’m grateful for that. I love my mom dearly, and always will; she was a great mom and grandma to my kids! But if I’m honest, I’m having a hard time liking and living with the mom she has become, and I hate that about myself. But, I’m committed to being on this adventure with her for however long it takes, and then walking her home, whatever that may look like. How can I not?
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