Growing up I always knew my mother was not mentally stable and suspected that what went on behind our closed doors was very different from other homes. In a strange twist, Alzheimer’s normalized her so that her behavior became very similar to many others her age who were suffering from the disease. At 80 years old CAT scans showed that her brain had significantly shrunk and the crumbling bones caused by osteoporosis shrunk her in size a tiny vulnerable woman. My mother was part of that generation that respected elders and never questioned authority figures. That part of her personality remained so that whether fractures or big bones broke she rarely complained even when the doctor asked she politely smiled in response and said, “Oh, it’s not too bad.”
Alzheimer’s creates another unpredictable person however. When my mother became this person she was lost then bossy. She was compliant then angry. At times, she was reclusive then anxious and agitated. We rode these roller coasters with her daily never knowing which person would wake up that day.
Because her own mother had the same first name, my mother always went by her middle name. When medical bills began to come in the mail however she noticed they were sent to the person with her birth name so she called herself that. She was going by a different name after 80 years of her life. That might have been easier to accept if her first name wasn’t mine also! When she didn’t know who I was and I gave her my name she replied, “That can’t be you, that’s my name.” She was right, of course, but the factual accuracy only exacerbated her self-doubt and feelings of confusion. It was upsetting to me because my mother didn’t even know her own name now.
Lost. Unsafe. Vulnerable. Confused. Seeking confirmation and always wanting to go home. Home wasn’t a place of course, it was a feeling of being safe and knowing everyone around you. Home is predictable and routine. Waking up in Mom’s world was not that for her. She was uncomfortable. She was looking at us suspiciously as though she was trying to understand who we were and where she was and why oh why were we doing the things we were doing?
Other things were different now. Her life-long dislike of chocolate and her preference for vanilla reversed. Blue was the only color she never liked and suddenly now it’s her favorite. She who walked for hours was confined to a wheelchair. My mother always cut her own hair, but she went with me to have her first professional haircut, mani and pedi at age 81. (The next day she began to peel off the pink color. After that we went with clear nail polish) She still liked to read so she read and re-read the notes on the white wipe-off board everyday. Those notes helped to ground her and remind her who and where she was.
I couldn’t help but look at her sometimes and wonder who this other woman was! But I also feared that if I didn’t know who she was, neither did she. She didn’t know who she was, where she was and on bad days why she even existed. “I can’t do anything for anybody and I don’t have money to give them.” That was her frequent response to the revelation that she had 14 grandchildren and 14 great grandchildren. Pre and post Alzheimer’s however my mother repeatedly said she didn’t have any favorites among her six daughters no matter how many times we jokingly tried to catch her up in this competitive siblings' web. Mom worried about being evicted from her apartment because she never paid the rent. (It was my sister’s place). On long drives she feared she was being kidnapped and asked me to show her my drivers license. That still didn’t comfort her because she said I didn’t look like the person in the picture.
But this fearful, sometimes sad, worrisome person was my mother. I was the first born of six and Mom and I always were close. Alzheimer’s disease not only confuses the patient but the family. She doesn’t know us and we don’t recognize her anymore. She looked like Mom but usually that was where the resemblance ended. I went thru the grieving process when I lost my mother to Alzheimer’s. I guess that’s why I refer to her in the past tense. She is physically still alive, but many days she doesn’t even want to be. I hold on to this opportunity tho, with both hands and my whole heart. I love this woman for who she was and for who she is and I will hold her for as long as I can.
The new Mom I’ve gotten to know enjoys affection and even thanks me for hugging her. Our real Mom never liked being kissed, even by her children. She always used to close her eyes and tighten up her whole face if I kissed her on the cheek. That woman is gone now thank God. New Mom loves having her hand held and her forehead stroked when she lies in bed. One day during the summer, we went to church together and I forgot to bring a sweater to protect her very thin skin from the air conditioning. She didn’t complain of being cold, of course, but I reached around her with my left arm to rub her left arm and increase the circulation. To my complete surprise she stayed in that position, her head on my left shoulder allowing my left arm to wrap around her for the entire Mass. It was like a 45 minute hug and I was dumb-founded, thrilled and confused all at once. It will always be a precious, vivid memory for me.
I can barely imagine what it must feel like to live in a state of constant fear and worry. She doesn’t remember who she is even after being shown her ID or old pictures. She has to trust that we will return to the car if we run into a store for a minute. She is always afraid we’re going to run out of gas or that we don’t know the direction to wherever it is that we are taking her. Some days she refuses to take her medication and I believe she may be suspicious of what we may be giving her and, of course, there is then the issue of time and death. Mom doesn’t know the day of the year, she doesn’t know her own age or whether the people she once loved are still alive. She must feel abandoned in a very stange world. When told repeatedly that her husband of 59 years died, she alternately thinks we didn’t let her go to his funeral or that we’re referring to her father. Mom also refers to her mother frequently, “Have I seen Mother recently?” I used to explain that this is the year 2012 and her Mother died in 1986 but I don’t do that anymore. A simple answer –not this week Mom – suffices. But with every short little answer I die a little. It’s like I’ve given up and I guess I have. My mom is gone like all those other people from years past, except that she is still here.
The fear in her has one benefit – she allows us to protect her. She permits hugs and the tousling of her hair. She appreciates her feet being massaged and other kinds of affection. Old Mom wouldn’t allow that sort of thing! She has days when she trusts being in ourcare and goes compliantly wherever she is led. She’s appreciative and doesn’t want to be a burden because we “all work so hard.” She smiles and laughs and I just eat it up. I work harder at making her happy times even happier and re-living all the good old days with her. Her smile and sense of being comfortable is all I need now. Really – it's all I need.
Sometimes Alzheimer's is kind and permits laughter. There are days when you can accept it all as the new normal, like when the first place you look for your missing checkbook is the fridge. Doesn’t everyone store their important papers there? Or when you see Mom fingering the multi-colored beaded necklace from a casino because she thinks its her rosary beads. We can somedays appreciate the sad/funny, too. In a hotel one night Mom was left in the bathroom to brush her teeth. When she emerged we realized that she used the tiny mascara brush and black mascara to brush her teeth……but she didn’t understand why my sister and I were laughing. Her new love for ice cream, chocolate of course, is a great help when trying to give her meds. At 83 years old, 4’7” tall and 88 lbs, Mom still worries about getting fat. She reminds us that she doesn’t want another baby. Everytime she got fat, she tells us, she had another baby! No more!
When she finally does “pass on” as they say, my mom will have left me twice- the first time being when Alzheimer's took her brain and her ability to know her daughters and herself. Even with that, however, Mom will be alive in my heart because whoever she is, she’ll remain my mother and I will always love her.
Clare Elton works at Catholic Charities in Cranford, NJ providing assistance to other caregivers. She can be reached at 908-497-3900.