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Sunday, September 18, 2011

How Alzheimer's Robbed Me Of An Adult Relationship With My Mother

I don't really like writing about my Mother, Ruby....not for the reasons you might think. Lately I have been thinking of her a lot, more than usual. I wonder if she were alive today how different my life would be. My mother was diagnosed with Alzheimer's in 1992 the same year that my daughter Destinee was born, the decline of my mother was quite rapid spanning a 10 year period. In that ten year period she went from a shy but active woman in her late fifties who worked outside of the home and cooked, cleaned, who had always taken great care of her family, to someone who could no longer do her normal every day job duties that she had done for 25 years. I noticed about a year prior to her diagnosis that she seemed to be more down then usual, becoming less interested in things that she used to love. Cooking, she either never cooked anymore or practically set the house on fire because she had forgotten a pan of beans on the stove. Decorating for the holidays, she decorated for every single holiday especially Christmas, but the Christmas before my daughter was born she just didn't even care, no stockings, no creche, no decorated table ornaments. She stopped crocheting and sewing too, things she did beautifully. I had told my oldest sister that something was wrong with her in June of 1991 by November, my Aunt who worked with her also noticed she was confused by the things she had done hundreds of times everyday this led her to quit her job of 25 plus years. My sister and Father saw for themselves as I had moved out of state. I was only gone for 3 months and when I came back she was being seen by the Alzheimer's Institute in Fresno California, before my daughter was born in May of 1992. My Father Robert, my sister Loretta, and my brother Kenneth and I sat down at a big long table with doctors from the Institute who said she had Alzheimer's, early onset to be exact. They also told us that there was no cure and really only a handful of medicines they could give her. They told us also that the type of Alzheimer's she had meant my sister or I had a fifty fifty chance of getting it too. This news devastated our family and from that day on I tried to learn as much as I could about it, this was pre-internet, and Alzheimer's research was barely beginning to be relevant.

There were times I would care for her so my Dad could go to the races or get some errands done, and I would go to his house with my young daughter and make sure she would have lunch or dinner and would be ok. Sort of like babysitting, babysitting my own Mother. She would try to leave and walk out the door and yelled, "Robert! Robert! Robert!" in a constant succession and when she could not find him she would go into a cussing tirade that consisted of rapidly repeating "Goddammit Goddammit Goddammit Goddammit!" looking back at that is quite comical, especially if you knew my Mother. A demure, petite, gentle woman who hated foul language of any kind! I would try to calm her or distract her. Often she would repeat the same story of her brother, Manuel and how he had went to World War II and how once he came home to visit and she could see him walking from a distance as he kicked up dust she knew it was him through the dust clouds because of the shiny epaulets on his shoulders and she ran to greet him. Other times she would get mad at me and tell  me to "Shut Up" she had even pushed me a few times. The conversation or the battle would inevitably come to an end and her sundowning would stop and she would go to her room and I would tuck her in but she refused to take her tennis shoes off, for fear my Dad would come home and she would not be able to leave with him again. My oldest daughter was only 4 at the time and she would peek into my parents room and watch me put  Grandma to bed. One day she asked me "Mommy why does Grandma Ruby go to sleep with her tennis shoes on?" I looked at her and told her "Because when Papa Robert gets home she will be ready to go."

When my daughter started going to daycare so did my Mother, she went to respite care during the day so that my father could have a break and take care of things he needed to do. He cared for her most of the time, refusing to put her in a nursing home. I would pop in at the Cay Dare as my daughter Destinee used to say and visit. They had about 6 clients total in varying stages of Alzheimer's, some were calm and quiet, some were active, some had good days and some had bad. The respite care provided meals and activities. They all seemed to respond to music and loved when records were played, my Mother especially loved Kenny Rogers. The door to the Respite care was painted in a Trump L'oil bookcase so that clients would not try to leave the premises. This did not stop my mother from walking out and getting 3 blocks away before they found her. That was our biggest fear, that she would wander off somewhere. A year after that situation when I had my second daughter Kassidee she declined more.

Roles were reversed and when my second daughter was two she was pretty much bedridden. My father had set up a hospital bed in the living room for her. She spent most of her time there or in a wheelchair that was used to sit her up and feed her. She did not speak now, but I would look into her eyes and try to see a glimmer of the woman she once was...sometimes I would get happily surprised because she would respond as if she was still in there! She was wearing adult diapers and would get mad at me for changing her! My oldest daughter noticed she wore diapers, and I had to explain to her that Grandma Ruby could not go to the potty anymore. She shrugged and said "Oh she has accidents?" There were days after caring for my Mother that I would go either home or to work and feel like God had forsaken me. How could he let my Mother, a woman who would and never did hurt anyone get this terrible disease. How was that fair and I told him one day that I Hated Him, that I would not believe in a God who would allow my Mother to get ill like this.

I did not get to enjoy my adult life with my Mother as I should have. She did not even know my youngest daughter Makenzee at all. She would have fawned over her beautiful Granddaughters, she would have baked cookies with them, taught them how to tie their shoes or brushed and braided their hair. She would have babysat in a pinch and made them grill cheese sandwiches or told my dad to take them to McDonald's for a Happy Meal. She would have made them frilly dresses and crocheted hats or slippers for them. She would have been the proudest at their school events, dried their tears when they skinned their knees or comforted them when a someone made fun of them. She would have been their champion like she was mine. Instead my daughters either vaguely remember her or don't remember her at all and that is the cruelest thing this disease does. It robs not only the Alzheimer's sufferer of memory, but robs those left behind in its wake of any opportunity to have future memories, cherished memories.

I have some friends who occasionally complain about their meddling, nosey, pain in the ass Mothers and when I hear that I get so mad and most times I say to them at least you have your Mother. To which they drop their jaw and in apologetic tones tell me they are sorry....I tell them, "Don't tell me your sorry. Go hug your Mother."

What I would not give to have her here again even for one day so we could catch up on the last 10 years, so she could offer me comfort and tell me she loved me, or share a good laugh or even a good cry. My Mother was eventually put into a nursing home where she lived the rest of her days. My father visited her every day and I saw her often. She passed away on May 2, 2002, my oldest Daughter's birthday due to complications of rectal polyps that were cancerous, but her real death was years before.
I have since come to terms with God and I have forgiven him for taking my Mother from me and my daughters, clearly he needed the angel that she was more than we did here on earth. I know she is constantly watching over me and her Granddaughter's and Great Grandson and that makes me content, but it does not mean I do not miss her every single minute of every single day.

September is World Alzheimer's month. I want to urge all of you to be involved in turning Facebook purple, the signature color for Alzheimer's Awareness, coincidentally one of my Mothers favorite shades! Turn Facebook purple to support Alzheimer's Awareness on September 21st, go to this link to learn how..... thank you for honoring the memory of my mother, Ruby Gonzales and those affected by Alzheimer's, it touches us all.

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