12 WEEKS TO NEVER
IN LOVING MEMORY OF FLORA MARIE GENSKAY
JULY 8, 1940 - OCTOBER 18, 1999
(Location, Brooklyn Park, Minnesota)
12 Weeks To Never
It has taken me 7 years to finally write this story. I don't think the pain ever goes away when you loose someone dear to you. So here goes. It all began the end of July 1999. We had such a wonderful life finally, after much loss and pain. We had shared the care taking of both Grandpa then Grandma only 8 months apart under Home Hospice Care. Things finally seemed to be looking up since the passing of Mommas parents three years earlier to heart disease. Mom finally had time. Maybe too much time. I'll never know now. I do know she was only 59 years old.
Mom started volunteering with online and local Domestic Violence networks. Mom was a survivor of domestic violence to the max. She didn't stay in victim mode long, all things considered. She rose above poverty with the help of a most wonderful man named Stanley Genskay whom she married in 1979. She sadly lost him to colon cancer in 1986. He was her one true love. Thank you Stan for loving my Mom Marie so very much.
Mom (whom everyone knew as Marie Genskay) helped many women in abusive situations. God bless her. May God also continue to bless all that know domestic violence in all its ugly faces. Mom seemed to be doing great, although lonely. Momma was living all alone in her big house, since loosing her mother. She wanted to and started writing a book about her life. She wanted others to find the faith, hope, and strength that she found in her long journey to freedom from abuse. She wanted to share her belief in Gods miracles too. She experienced many in her lifetime.
The last few months of her life were filled with love, horror, panic, yet serenity as well. My brother Dave had taken Mom on a mini vacation to the farm where he was then living. They had a blast, watching cows, going fishing, laughing, and talking about hunting and so much more. She returned from what was the last trip she would ever take. She was so full of energy and life.
My brother Rick and his wife Sue had Mom at their house for her 59th birthday that July. She had been so thrilled to share that day with them. She looks so happy when I now look back at the pictures of them hugging and smiling. There was no sign that anything was wrong.
It began slowly. She just didn't feel quite right she would say. She was getting very tired all the time. Becoming kind of forgetful and she didn't know why. We thought maybe it was from all the stress of her working long hours at her job at the storage facility. Or possibly depressed from the loss of her dear parents. Little did we even dream what it was to be called in reality.
On a nice beautiful summer night, Mom was on her computer talking with me, and a friend through instant messages. She wasn't making much sense. I thought maybe she was just overly tired. I don't remember much now about what was exactly said. But I got scared. I told mom to just sit there and I'd get my son Kris to go over there to find out what was going on and get her to a hospital.
He took her to the ER and they admitted her for what they thought then was a mild stroke. I had called Dave and he left immediately to go see our Mother. He drove through the night and got to her side. The many tests began. The results were always "Negative". She couldn't walk right. She'd try and always end up going to her left side. She was tired. They checked her arteries and they were clean as a new baby's.
They released her to her family doctor and a wonderful neurologist named Dr. Susan Evans. Her doctor started physical therapy at home. They really thought she would improve. But she didn't. She got worse. My brother stayed with Momma and took her to appointments, which seemed never ending. He was to take a trip to Texas with a friend, so finally I went to stay with mom. I'll never forget what I told her jokingly. Which was "I'm here now. Now you can die". I'd become so used to going to help others who ended up passing away. God, if I'd only known then what I do now.
We stayed together as Mom continued to wobble when she walked. We got her a wheelchair so she wouldn't fall. When my brother returned she was obviously much worse. She had trouble using eating utensils, or even drinking from a glass. Things we usually take for granted became difficult for her to do. Everything changed day-by-day non-stop. Her doctor was out of ideas by this time. So off we went to see Dr. Susan Evans. I can't even begin to list all the tests of her blood, her spinal fluid, her brain CT 's, EEG's. That doctor left no stone unturned. Mommas mind began slipping. They ran an Alzheimer's test, which was "negative". Everything was negative but NOTHING was NORMAL in her life.
Then it happened. I had gone home to be with my kids and husband to draw up Mom's last will and testament for her. A call came which I can never forget. "Carmie, come quick! Mom is having seizures". They couldn't get her out of the wheelchair and her body was convulsing horribly. It took two people to try and hold her in the chair. That was when Mom started saying, while looking at us with pleading, scared eyes "If they don't find out what's wrong with me soon I'm going to die, Honey." That wasn't the last time for this to happen.
She had another doctor's appointment. Those appointments were on a daily basis by this time. I stayed at her house while they went to the doctor's that day. They wanted to send her to a psychiatrist to test her memory. She tried so hard to do all that was asked of her. She was raised by a minister and had extensive biblical knowledge. Heck, she had even started "preaching" in her 40's.
Later on at home she got very quiet, looked strangely and asked who Noah was. We told her. Then she chuckled and told us she had told the physiatrist Noah was Samson in the story of Samson & Delia. She laughed but was also afraid. She KNEW she was loosing her mind now too. As did we, her family.
Later on the doctors finding was "Dementia". Mom came home and broke down saying to me "I'm loosing my mind, Carmie, Oh Dear God!!! My worst fear is coming true" and she sobbed. I just held her and assured her everything would be all right. How far from the truth I was then.
Another doctors appointment and all had been checked out. Now Momma wasn't even able to get up alone. She had to be helped to shower, to go to the bathroom. I had to help her, using a transfer belt so she wouldn't fall. Her legs shook so much as she tried to help move herself. I started joking with her about dancing with me each time her poor body would shake and tremble. That came to be known as our Dance with Momma. We had to find humor in the horrors going on around us all.
Just before she became bedridden she returned home from another appointment. I had been online looking for symptoms she had. Trying desperately to find out what the heck was happening. I found a website about mad cow disease and started reading stories on the website known as "The Many Faces of CJD". As her car pulled in tears started flowing from my eyes. I couldn't let Mom see my tears. I tried drying up my cheeks. Once she was inside she wanted to know what I'd been looking at. Just before I showed her the website she told me her neurologist had told her she thought Mom might have CJD, aka mad cow disease, or chronic wasting disease. No matter the name, it meant death, Mom's death. There is no way to stop this disease at present.
Together we sat in front of her computer, reading story after story. They all ended much the same. We both wept as we seen bits and pieces of what Mom was going through in each heartfelt story. We hoped the initial diagnosis was wrong. Yet the more we read the more things made sense to us both. All we could do was cry. Home hospice was called and we all began the Dance of CJD. Mom had to get a hospital bed and get a catheter going.
Then, we decided to e-mail someone and ask for help. We were sent another angel named Linda Boss who had lost her husband to CJD. Linda came over and brought a video that a local news station had done on her husband and others afflicted by this monster disease.
Linda helped us in many ways. She took over the researching for a place that would autopsy mom when she died. Linda often listened to my cries as Momma worsened. She helped me cope with what was insurmountable emotional pain. Helping me deal with the then role reversal between Momma and myself. She was quickly becoming forgetful, and dependant for most all her needs. She was becoming childlike. I was her daughter, yet I also had to "parent" her. Linda helped me walk that fine line. It was so hard on us all.
Momma became bedridden. She could no longer eat. Severe vomiting began. She couldn't even hold down Ensure drinks. She lost so much weight. She was frail. She was still alert mostly. Though, sometimes what she saw and heard, no one else seen or heard. We began pain meds for the severe pain Momma started feeling. Then the standard Ativan medication to help her with her anxiety, anti-seizure meds for the awful seizures she got and the horrid tremors she had to endure.
Here was the strong woman who survived hell and back with severe beatings, rapes, and isolation. Then she was a single mother before that was an acceptable thing. She was withering before my very eyes!! Oh Lord, what was happening? God couldn't take her from me. I still needed her so. She was my best friend, my confidant, and my precious Momma. She became terrified of showers, of people, and things. Once she was lying there in her bedroom and she was looking at the wall. Tears began to flow her body shook she tried to hide under her covers. I asked her what was wrong. She peered from her sheets saying there was a lion looking at her. Finally after a few more simple questions I discovered her lion. It was her cherished mirror she worked so hard for when I was just a small child. It was ornate and golden. I took it down and the lion never bothered Momma again.
Momma slipped further into a different world. One mixed with the here and now and another world beyond. In a semi-lucid moment she told us she was going into the "deep blue sea" and going to Hawaii. Later we realized how prophetic she was then. Her deep blue sea was the dark blue sheets on her bed and her Hawaii was paradise.
Momma went blind. Yet somehow she "seen" a little cross a night nurse made for her, sitting up on top of her TV. She said "Oh, how lovely that cross is". Her doctor couldn't believe she seen that. For her pupils didn't respond to light. The tests showed she couldn't possibly see. One afternoon I was emptying Mommas urine bag and was talking to her. When suddenly she said "I wonder when my daughter Carmie is going to call". I gulped and sadly realized she didn't know who I was. My heart sank with pain. But I calmly said, "Momma, I'm here". She smiled. Things were not the same from then on.
I kept my promises and I said all that was needed to say as these weeks marched on and on. I have only one regret. That is that Momma died so soon in my life. I don't care what you lost a loved one to. It's never easy to let go. It hurts like hell, be it from cancer, heart troubles etc. We all became so exhausted caring for our sweet Momma. But it also was a labor of deep, unconditional love.
She lasted the night when all bets were off. She lay for many hours making crying noises like a little lost lamb, totally in a coma. I could barely stand that. The hospice nurse said she wouldn't last long now. I just couldn't call my brothers right then. I wanted to try to spare them the agony of hearing those cries. I finally called them and told them to get there in the morning. Somehow our Momma waited for her three children to be at her bedside. I had been asleep, something that no longer was easy to do. Sleep only seemed to waste precious moments we had left with her. I was awakened by a dream. Momma was calling me to come to her. I got up and found my two sweet brothers sitting in her bedroom. The hospice nurse was there and most of the family. My husband, daughter Carmie Jr., and son. Steven were on his way to be there too. Kris was there but hadn't yet gone to "talk to mom". She was his "second mom". He couldn't deal with this new reality of loosing her. So he stayed in the living room with family and a hospice nurse.
As I entered her room I heard her breathing increase and the all to familiar death rattle. Oh My Lord, this was it!!! I told my brothers Dave and Rick that I hadn't awakened on my own. They to noticed the sudden change in her breathing. I bent over her, my heart flooding with the finality of life looming in that bedroom. I gulped, took in a deep breath and with a faltering voice I told her "your three babies are here, baby girl. You can go on in peace".
My Angel Momma took two more breaths. Then she was gone from her hell that had ravished her body in only 12 weeks. 12 long, yet so short weeks, to my never.. To never hear her strong sweet voice. To never feel her loving hand caress me. To never hear her laugh again. To never have a Mom again. To never having phone conversations with her again. 12 weeks to my Never. I miss you, my Mom, my best friend.
I pray you find the peace you search for as you read this. This is yet another story of a tragic loss. That is why I took over these web pages. They came to mean a lot to Momma and myself during her illness.
Each story here is a story of love, loss, and freedom. Freedom from CJD. Freedom from a senseless disease, and horrific pain both physically and mentally.
Marie was so loved by us. We said our goodbyes in her bedroom. Not many places want to take care of a body riddled with Creutzfeldt-Jakob disease. The risk of infecting can be fairly high. Momma was so terrified she may infect someone else. We opted for a private memorial at home. Then there was a cremation, after her brain autopsy. My sister-in-law Sue and my kids washed her sweet face with loving tenderness. My daughter Carmie Jr. picked out an outfit for her to wear. They put make-up on her and as they did these things, Momma gave us all her final gift. A smile came across her worn face slowly, and a glow came upon her. Momma was home, with God after her 12 weeks to my Never. God blessed us all. I had her for 42 years. I thank God for those years.
I'll love you forever. Thank you for all the blessings and for being my Mom, my best friend, and my hero.
Your daughter, Carmie G.
Surfing the web I found these things I'll share here.
Marie Genskay
Minneapolis, Minnesota
Flora (Marie) Genskay She was my friend. Not for a long time while she was alive, but forever in my heart. She will be missed greatly by those who she touched in her life. Taken to early in life, but forever looking over us. We love you and will miss you everyday of our lives. May everyday you spend in heaven be one day closer to our next meeting. Love and Hugs, Paul and Darlene.
Here is a poem written in memory of Faye Clark,
deceased wife of our friend, Ray, by my Mom.
Faye Clark Ovarian Cancer Memorial Page
Tribute to Faye
May your Spirit soar high above the clouds
To meet with those gone on before
To romp and play on fields of green
With shouts of joy we welcome thee
Then it's time to return again to earth
Your Spirit is needed to help and heal
Through the internet and in person
You must remain yet for awhile
Your mission on earth is so worthwhile
May God bless and keep you forever in his hands
For you are an Angel in Gods plan.
--Copyright by Flora Marie Genskay
--January 12th, 1999
Comment by Ray Clark, Marie and Carmie's friend, on his website.
Little did we know that my good friend Marie, eight months later, would join Faye with the Angels, with a disease more terrible than ovarian cancer taking her life - CJD or Creutzfeldt-Jakob Disease. Her story, and much information regarding CJD can be found on the following web page.
Marie Genskay Memorial CJD Web page.
Click here to view:
Marie
Back to The Many Faces of CJD
Created 21 October, 2006
