One of the saddest, most heart-wrenching experiences I have had was watching my grandmother, and then my mother, descend into the abyss of Alzheimer’s Disease. Both came from Europe as immigrants in the 1950’s with only the clothes on their back, to find a better life.
My mother’s childhood during the war consisted of fleeing from bombs, hiding Jews on their property and later becoming refugees. Their lives were filled with fear and hardship and I did not escape unscathed. My mother always wanted her story to be told, but I am sorry now that I know so little of it.
I vividly remember the first time I realized my mother had Alzheimer’s. We went shopping and she was trying on some clothes. She tried the same clothes on over and over and over again, cheerily asking me how they looked each time. It was then that I realized, she doesn’t remember at all that she tried these clothes on before. We could have been there all day. All the times where the ugly Alzheimer’s was there but I hadn’t realized it yet, came flooding back to me. The notes of where to meet me at the mall, getting lost when trying to take the bus, inability to read or work on a craft project, it was all there staring me in the face.
I reported to my brother that it seems obvious that mom has Alzheimer’s just like grandma, who was still alive and completely bedridden. He was in denial and didn’t believe it at first. That was rough too. As a child I was always told my grandmother was “forgetful.” Alzheimer’s wasn’t mentioned then, it was referred to as hardening of the arteries and just a normal part of getting old. I thought what a horrible thing it was to become old!
As time went on, I noticed mail would be returned, either because my mother did not add postage or address the envelope properly, or because the check inside to pay a bill was written in complete gibberish. She would say with the saddest puppy dog face, “I made a mistake, didn’t I?” As a result, I cannot write a check without scouring over it a dozen times to make sure it is correct.
Then there was the time she told me to take her to the bank. She told the teller she needed to withdraw $2,000. My father wanted her to. The teller was arguing with her and I found out she did not have that amount of money in the account. The teller was looking at us like we were trying to pull something. I am lucky she didn’t call security. I tried to explain to her that my mom has a problem, painful to do with her standing right there, plus the teller didn’t seem to believe me and the whole experience was humiliating.
At my parents’ house I would find all kinds of crazy things, like plates stacked together wet, with mold in between. The silverware in the drawer was unsorted in a big heap and my mom got violently angry at me when I noticed. Now, every day when I put away the clean silverware, I think about my mother and try to sort them as quickly as possible telling myself, phew, I am still able to do this and in record time! Maybe the Alzheimer’s ghost hasn’t come for me yet.
Another time I wandered into my parents’ basement pantry and found endless jars of pickles and spaghetti sauce. I counted them……..60 jars of pickles, and about as many of spaghetti sauce! I was devastated and felt like someone had punched me in the stomach. It became apparent that every time the neighbor lady took my mother shopping, she didn’t know what to buy so always bought pickles and spaghetti sauce. Sadder yet, is when the neighbor stopped taking her shopping altogether.
Throughout all of this, I would see her lose friend after friend and most of the relatives stopped visiting. No one wanted to interact with a shell of a person they once knew, not even me. The depth and intensity of the sadness of all of this is indescribable. I did not have the best relationship with my mom, but to see someone you once knew become so completely helpless and unrecognizable was sheer anguish.
I always feel I should have done more, but what? My father also had health issues and was incapable of taking care of his wife and my brother moved out of state. I, myself, was the mother of triplets and then another child 2 years later, so my involvement was quite restricted. The solution became to hire a live-in caregiver. I still sometimes have guilt about all of this, especially since my mom devoted her life to taking care of her own mother, but that is just the way things played out.
In the end stages, when my mother stopped recognizing who I was, it was the worst feeling and sadly, I don’t think she ever fully realized she had four grandchildren. I have a few photos of her with my kids when they were babies, but she looks wretched and it scares all of us to look at them. There is one photo, however, of when my youngest was born and we brought her over to meet my parents for the first time. We placed the baby next to my mom and she reached out her frail, weathered hand to gently touch her granddaughter’s face. I have this photo framed because it reminds me that even when you don’t seem to have any kind of mind left, you can still instinctively reach out to another human being in love.
This all causes me to wonder how God deals with us when our minds are gone and we can no longer pray or acknowledge Him. Are we in some other realm where He is more present? Are we waiting to be birthed into the next life like an infant in the womb? Does God just interact with the heart? Do other people have to step in for us? Your mind and memories are who you are. Without them you are just a breathing blob of body. People would try to comfort me by telling me the sense of hearing is the last to go and so my mother could still hear…….I had to cling to that, although I was not good at speaking loving words.
Shortly before she died in a nursing home, she spoke to me, which was rare at this point. She was trying to get out of the bed and told me she “was going home”. I didn’t know which home she really meant, but turns out God did take her home not too long after that. I can only hope she is now made whole and that a cure for this mind-robbing disease be found quickly.
Dedicated to my grandmother, Anna and my mother, Elizabeth.