Old Ned's Blog

With trembling hands, she cried out, “Who are you?  Where am I?” She wept. There was terror in her eyes.

I took her hand and replied, “ I am your husband. My name is Ed. We have been married for 46 years.  We live in Indio, California. This is our home and we are in our bedroom.”  Her eyes darted around the room. There was an emptiness in them.

I told her that she was safe and that I loved her and would take care of her.  I held her but she pushed away. She didn’t see my tears.

I sat her down on the chaise lounge next to the bed. I picked up the binder I had been using and I opened it.  I smiled at her.  Her eyes were still searching. Almost frantic.

I showed her a picture of us with our boys and told her their names. I showed her pictures of their wives and children. I showed her pictures of her sister who lived in our neighborhood.

 I then handed her a stack of family photos and named each person and told a little story about each one. These were people she loved and people who loved her.

I explained that she had been in the hospital for a long, long time and that she had 7 operations and had survived. I thought back to the weeks I sat by her bed in ICU praying that she would live and now she was home with me.

I leaned over and kissed her on the forehead She finally smiled and just said, “Ed.”  

Dementia is a terrible thing. It tears your heart apart. It takes away a loved one and leaves a shell.  I barely slept anymore. Any move on her part would have me wide-awake. Her dreams would become reality and she would run out of the room, seeing and hearing things that weren’t there.  By the time I unhooked from my CPAP machine and ran after her, she would be in the other end of the house looking for someone or something. I had to hide the car keys and keep a light on in the bedroom. Some days she would just sit and look out into the “somewhere” and not move until I took her by the hand and brought her to the table to eat a simple bit of food.

I knew from the start that it did not matter if I spent the rest of our lives just this way each day. Our sons had been here over the many weeks. They felt the pain as much I did. No, that is not true. My pain was too much pain. But they were there then and are still there now. They know.

They helped to get a chef to bring us meals and a wonderful care giver who would bathe and dress her each morning and stay with her until she dressed her for bed each night.  It took so much pressure from me, but there was still so much desperation in my prayers.

The months crept by. Slowly she was coming back. The doctors said that her dementia was caused by the many, hours-long operations and all the anesthesia.

They said that the daily infusions of high-powered drugs to fight the MERSA infections she picked up in the operating room had also added to the dementia and she may never recover.

But, those vacant eyes slowly became alive again and we are beginning to get our lives back.

We are the fortunate ones.  She has come a long way. The many medical issues have destroyed so much of our lives and we still battle the vacant confusion and disorientation that comes and goes.  She is now in stage 3 liver and kidney failure, so we cannot be far from the hospital. We go on living and we do go out for dinner some nights and have friends and family visit.

I moved our recliners from the family room and took her to Mathis Brothers where we picked out a single love seat recliner, so we can sit side by side and hold hands.  She still needs that closeness and I know that I do too.

One dear friend is not coming back. He slowly disappeared into this lostness.  I see the pain when we talk. He was a doctor and knew what is happening, and he still tried hard to stay with us. He passed away several months ago. His wife is dealing bravely with a terrible loss. I know the depth of how she hurts.

Another friend has Alzheimer’s.  He was such a brilliant man, always smiling and full of life. I loved talking with him. What a blessing to have him as my friend. He has now crossed over a bridge to a place from which he can never return. I see the grief and pain in his wife’s face. She is exhausted and broken apart. We grieve with her.

We lived during this time in a seniors’ development. This pain and “lostness” was all around us and we would walk by and smile and do nothing because it was not us. But then it became us.

Our sons came down and had an intervention with us after I had several bad falls, and my caregiving was becoming difficult. They moved us north, next door to one of their homes. We are all settled in and comfortable. But not in charge now.

My life has changed forever.  My wife has changed forever.  We will never be the way we were. But we are what we have become. We will live this life together. We can hold hands, sit side by side, smile and be in love. That’s enough.