Alzeheimer’s-A Daughter’s New Normal With Mom-Beautiful!
By Kaye Baker
(Kaye is Director of Outreach at Glencroft Senior Living in Glendale)
I’m sitting with my mom today and again wondering what can I possibly ask her that would invoke a conversation. I guess we still do have conversations. They are just different now. The words now are scrambled and have no connection to one another. The brief snippets of conversation that do make sense are few and far between. Oddly Mom seems to throw in these moments of clarity just a the very moment I question what language we are speaking. This is our world. This is our Alzheimer’s World.
My mom is 87, and was officially diagnosed with Alzheimer’s 3 years ago. She lives in one of the nicest Memory Care facilities in Phoenix with about 30 other residents. They all live on the 2nd floor in individual small apartments and share common areas. Most residents are out of their rooms and socialising with their new “friends”. My mom has developed a new personality. She is now a busy social butterfly interested and distracted by everything and everyone around.
The residents regularly sing songs, participate in exercise class, play kickball with beach balls and enjoy entertainers who sing the hits of their younger days. They play easy games and sometimes attempt bingo, which has to be a lesson in patience for the bingo caller.
I love– and I mean literally love– the Alzheimer’s caregivers who are now my mom’s new best friends. She is mostly nice to them and tells them endlessly how much she loves them. She does the same for me. If ever I wonder how beautiful and loved I am, I just go visit mom. She is so quick to point out that I look beautiful and she loves everything I wear. She lights up when I walk through the door.
The only hitch is that I’m no longer her daughter; I am now here older sister. Some Days I’m not even that, I’m simply someone she loves. While that can hurt, it has to be good enough. That is her world and my world. Alzheimer’s world. At least I know she loves me!
Alzheimer’s World is not all bad. She’s actually pretty funny and most of the time fun to be with. She loves to laugh and make anyone who will listen, laugh too. It is a nervous laugh but if she thinks you like it – she can bring it! She has always been willing to go anywhere and do anything. Only now, when we arrive at our destination she has no idea where we are or how we got there. When she can’t read a menu I would order something familiar and simple for her. She sometimes forgets how to use her silverware and tears her napkin into a million pieces and then look at me and ask, “Is this right?”
Of course I’d always say yes and tell her what a great job she did tearing up the napkin. After all, this is her reality now and she needs to feel validated.
For the past 8 months, we can no longer leave her building. The day she opened the car door as we were traveling down a busy street, I knew those outings were over. She now has trouble getting into the elevator to go downstairs in her building. She hangs on to the grab bars like we are taking off for the moon. Her world has shrunk again, she is mostly confined to the second floor!
We still have one constant comfort. When we are caught with not knowing what to do next, we sing. She loves to sing and she could sing most any song from her younger days. Thankfully, I grew up singing – so this task is easy. When her disease was less severe we would sing in restaurants, bathrooms, hallways and places where it probably wasn’t appropriate, but who cares? Singing meant all was well in her world. And mine.
We still sing but now the words and tune are made up. Often other residents join in with their own set of words. Somehow it is music to their ears of another world. Just the other night, I walked through the door and about 10 residents were in a circle and one of the more cognitive residents got them all to chant, “We want ice cream, we want ice cream”. In a split second I felt a rush of delight for my mom. In a world as chaotic, painful, brutal and unforgiving, there is still joy for my mom, ice cream. Relief was what I felt. .
In all of this disease’s surprises, the biggest is how desperately scary and lonely it is to be her caregiver. I’m no longer a daughter who can talk to her mom about life. We lost her husband (my father), her two sons (my brothers) in the last three years and I can’t even grieve with the one family member I have left. She doesn’t even know my older brother died a little over a year ago and I’m glad for that fact. It’s easier now because she never asks but I used to have to brace myself for the question of why he doesn’t come to see her, but I guess the reality is she doesn’t remember anymore so the question doesn’t come up. She can simply chant ice cream and that is enough
Life isn’t always happy or fun for my mom. Most times I leave her it is painful. She used to never want to say goodbye to me and did her best to come up with reasons for me to stay. It was often times like dealing with a child who would do whatever it took to get that one thing that they just can’t live without! But now I just tell her I will see her tomorrow and say goodbye. The upside of short-term memory loss is that if you wait a second or two, this too shall pass and you are on to a whole new topic.
I’ve gotten pretty good at our childhood memories since we are now sisters, I just agree and nod. That brings a smile to her face because we are connected in a faraway land. I agree to everything and I do my best to make her feel happy. I’ve promised we can live with mother and daddy, we can go on a trip to see aunts and uncles I’ve never even heard of. And of course we can get her a dog and a new pair of shoes. At first these felt like lies, now they feel like gifts. Then I realise I am lucky. We are still talking, with jumbled words or not, we are still talking. There will be a day that won’t happen.
Please don’t misunderstand, Alzheimer’s is a terrible disease. My mom can no longer brush her teeth, and doesn’t want anyone else to either. She can’t dress herself or make any personal decisions. The sparkle in her eye is often gone, replaced with twitching as she searches for words. She always loved clothes and cared so much that her outfits were perfectly put together. Now she wears whatever her caregivers put on her. She can’t express her pain or fears. She can’t even ask for what she really wants.
One thing has remained constant; she has always been generous. She still is. The other day she had a bag prepared for me which included: a hearing aid (the other is long gone along with the charger), her jewellery, a nightlight, some batteries, a few pieces of plastic silverware and a pair of glasses that someone probably gave her. She couldn’t wait for me to get the gift.
“She may not know who I am anymore. But she still loves me.”