Monday, February 13, 2012

OLD LOVERS IN LIMBO

Written by

KATHY WALKER

KATHY WALKER

Fri, October 03, 2008

Back and forth to the nursing home, she tirelessly rides the road between there and home.  The home they shared for 55 years, the home where they raised their three children and played with five grandchildren and three great-grandchildren.  The clock ticks a relentless tick-tick-tick in the background, but she doesn't look at it or hear the passing of time.  Her entire focus in on the life form of her soulmate lost in the confines of his own mind, worn down by a disease with a name that no one wants to speak or hear.

 

"He still eats whatever I give him and as long as he'll eat, I'll feed him," she tells whoever asks how he's doing.  In a matter of months, he has gone from a robust, slightly overweight figure of a man who walks and talks, to a very trim, not yet skeletal, zombie-like creature who rarely speaks and cannot walk.  The awful disease, held at bay for years by trial and error combinations of drugs and research, had finally eaten through their protective barrier and run amok.  He remembers no names, no places and very little of the language he has spoken for 76 years.  But because of a powerful appetite stimulant that still can "talk" to his fried brain, he continues to chew whatever is placed in his mouth.  Blood clots in his legs forced him to bed weeks ago and most probably, that is where he will remain.

 

But she doesn't give up; she continues to hand feed him at every meal and coax him to draw lifegiving fluids through a straw instead of chewing it as if it were more food.  This is the man she loves, has loved since her teens and she is 76 now, too.  He is the father of her children, the keeper of their home, the patriarch of their extensive family that dearly loves him.  And he is dying....a physically fit man who farmed all his life, who worked in the great outdoors sowing, plowing and harvesting crops that he sold at market.   Then this cruel disease began to eat at his mind, nibbling bit by bit, then biting off large chunks until finally, it invaded the parts of his brain that control his physical wellbeing. 

 

She has taken care of him at home ever since he was diagnosed, with very little help from family or outside sources.  She stayed up nights to watch over him as he rambled and raved about their old farmhouse, then exhausted, slept with him when he finally fell asleep the next day....just to do it all over again, night after night, day after day, year after year.  She saw that he had balanced meals and took the latest medicines and took part in the latest research, to try to slow the dragon's progression, to keep it from crossing the moat around the castle.  But finally, the dragon not only crossed the moat, but burned down the castle gates with its fiery breath and entered to destroy whatever it could inside.  In spite of her careful attendance to every detail, Camelot was no more.

 

He became violent, completely out of control, agitated and unsure he was home, even when he was.  Having not touched a hair on her head for 54 years, he began to assault the woman he had loved for as long.  Beyond exhaustion, she finally called for help and measures were taken to have him placed where he could be treated for the aggression and the horrible hallucinations of great birds trying to claw at him and eat him.  Then there were rounds of hospital emergency rooms, treatment centers and nursing homes that sapped the last bits of dignity from him and confidence and strength from his family. 

10/ 3/08 9:09pm

Kathy - thank you so very much for sharing this wonderful story with us.  I have to say I am sincerely moved and all i want to do right now is call my husband at work and tell him how much I love him, until the end of time!

 

All the best, sue (moderator)

 

 

 

 

 

 

10/ 6/08 8:46am

Thanks, Sue--this is just a "love story" written from my heart for my mom & dad as the last round of Alzheimer's is played out.  What a long, rough road this decade of horrible disease has been and I just pray we find a cure sometime before this next decade is up!

Kathy

10/ 5/08 9:57am

I could barely read as I read your story from the tears, I cry as I write this because I to am the primary care giver for the love of my life. I have watched as this man I love lost both legss to PAD. In the beginning before acceptancr I kept telling his doctors he was having problems with his memory and behavior because he wasn't wearing his oxygen like he was told. He had COPD at the time, my doctor told use during an appointment over two years ago she had to tell many patients and thier families the diagnosis she had to tell us but but it was not lack of oxygen that was wrong with him, it was Alzheimers she had suspected for over a year. She did all the test to comfirm it I had still held out believing it was oxygen or lack of that was causing the changes in him. The next visit a week later she confirmed it and started him on medication. I kept tunnel vision for almost two years this man I loved this couldn't be happening to, I stayed with this until about three months ago even on medication for this disease my mind just couldn't seem to accept it. I have watched him change and I have watched him disappear more each day. I thought when I had to sign the papers for the doctors to remove his legs was the worst thing that could happen to us, it wasn't this is. Until it happens to you or the one you love you don't understand. I have sat by his bed and prayed so many times during each illness and prayed for God to save him and just let us have a little more time together, he has but now this. I sit by his bed now and pray for acceptance and strength to continue on. In the beginning I promised to never let him spend even one day in a nursing home but I now see that may not be a promise i can keep. He weighs 150 lbs and i weigh 105. I have had to lift him and pick him up many times I know in my heart that the day is coming I will no longer be able to do this. Ray still has his times of rational thinking and has told me he fears becoming abusive because he was a trained soldier. He is abusive at times with his mouth  but I know it is the disease. This man I love is a christian and as time has passed I have heard words come out of his mouth I never thought I would hear, I know it is the disease but it still hurts to hear and watch. I will love him forever and will continue to keep him with me as long as it is safe for both of us. I gained the strength from joining this site and people that share thier stories with me. I am so sorry you are living with and sharing the pain you are going through, I can see from my own life with my  own heart and eyes what you must be feeling because you see I am living the same life different story same disease. My grand daughter suggested I rent or buy the movie AWAY FROM HER, I did, I cried through the whole movie it mirrors what we are going through, if someone is living with this try to watch it. This movie is one of the last great love stories. When your lover is going through this you realize there isn't much you aren't willing to sacrafice for your soul mate. Living in the last great love story. Thank you so much for sharing. If I can help in any way please let me know. From a friend that shares your pain. Connie  

10/ 6/08 8:44am

Connie, this was a love story I wrote for my mom & dad.  This horrible disease has consumed our family for almost a decade now and seems to be coming to an end.  My mother's careful attention and seemingly tireless caregiving has been both a thing of beauty and trepidation to watch......beauty, because of the deep love which has always been obvious between the two of them and trepidation, because this disease is our legacy now and I fear someone else in our family will have to go through this same terrible process down the line, unless research finds a cure for Alzheimer's.

 

I feel your pain and will keep you and your husband in my prayers---there are SO many of us out there!  Kathy

10/ 6/08 9:03am

Thank you Kathy the one thing I have learned is prayers are answered maybe not as we chose but always for the best. As your mother no matter what we face I will have the memories of the true love he and I have shared. This seems to be another chapter in our love story, even if I had know this disease would come my only regrets would be letting life invade on our love and hanging on tighter to each and every little memory. I am the memory keeper now thats his memory is going. I make sure each day many times a day to share a memory with him and tell him constanly and no matter what I will always love him forever. Connie

2/ 2/09 4:58pm

My dad, the Alzheimer's patient named in this story, passed away on December 2, 2008 from complications of pneumonia.  He was days later and then on December 10, 2008, my brother, my parents' oldest son, passed away suddenly from heart failure.  I cannot begin to explain to anyone how much my mother has grieved since then....not even given a chance to begin to grieve for my dad before my brother died, too.  She says that the death of a child is far worse than the death of a mate, different though they may be. 

 

My mother's health is now failing....all of the constant caregiving, weighted down by insurmountable grief, has taken its toll.  She's being tested for heart disease herself, she needs gallbladder surgery and knee surgery very soon.  But if only we could ease her mental anguish & suffering over these two back-to-back deaths in her life, maybe we would feel better. 

 

Please say a prayer for my mother....her name is Lois Burdette.

 

 

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