Dignifying Dementia (26 page)

Somehow, I drove to the supermarket. I don't remember but, once there, the enormity of what was happening, Jim's dying, and my shock at what had been said, it all hit me. I wept as I grabbed the items I was looking for. A young woman who was stocking the shelves asked, “What's wrong?” I told her. I don't remember her name, but I do remember her putting her arm around my shoulders and comforting me.

I was touched – deeply touched. I paid and raced back home. I asked how he was doing. I tried to give him liquid myself – with a dropper. I tried the soup, the ice pops, nothing. His lips stayed closed; his eyes stayed closed. Was there any cognition? Was he saying, “No more, I have had enough?” Part of me was hoping that he not I was making the decision. I was hoping that he was giving up the struggle because he was too tired to go on any more.

I don't remember whether it was that day or the next when we stopped trying to give him fluids. The nurses from hospice dropped by. Unbelievably, one asked if we thought he had ‘food poisoning.' Nine years of loving him, caring for him, making sure he was safe, and now I was being asked if the lobster wrapped in sole had killed him.
Dear God!

The days went by. Jim slept. I pushed the twin beds together and lay by his side and held his hand and listened to his breathing – the long silences followed by normal breaths, the warmth of his hand in mine, the softness of his skin.

Jim was dying. The dawning, the disbelief, the realization that this time he was, in fact, dying. No Amoxicillin could save him. The women were there. They took turns staying through the night. One night we all slept on the floor. They rolled him, changed him, and gave him a bed bath. He never opened his eyes. Father West came by on January 5 in the evening to sit with me. He went into the bedroom and spoke to Jim and told him to, “Let go.” I kept the CD player on by his bedside and played Brahms'
German Requiem
, Vivaldi, and something by Yo-Yo Ma.

Ten days after the bile oozed from his lips, the men from the funeral home came with their gurney to take his body away. I kissed him one more time and said to now deaf ears, “Thank you, Cookie.”

I have little recollection of what happened next. I must have hugged Dr. Brennan, the hospice nurse and Denise. I am sure it was Denise who told me to call the funeral home. I called Kevin and Ellen. I had phoned them both earlier in the week once I knew Jim wasn't having another IV and wasn't taking any fluids. That morning I reached Kevin at work and told him his father had died and that I would let him know when the funeral Mass would be. I have no idea how I said it. Nor do I remember what I said to Ellen other than to tell her Jim had died and to please find a way to come.

Numb? Mechanical? Disassociated? I was going through the motions. I was doing what I was supposed to do.

Despite the people who were still in the apartment, I remember the emptiness, the absence, the void, the loneliness. The whole apartment had breathed in and was holding its breath. Everything changed with Jim's last breath.

There were no tears now; perhaps I was too stunned. And yet how could I be stunned, when he had been dying for years and ‘actively dying' for 10 days. There could be no ‘ambivalence' anymore. Jim was dead.

It was over. And I hoped that somewhere in his profoundly damaged brain, he knew how much I loved him, how much our lives together had meant to me. And how profoundly I would continue to miss him. I hoped he knew that I tried to be there for him. He once said, “Dignity matters so much to you.” I hope he knew how I had tried to maintain his dignity, lamely, but I had tried to protect him.

We had never been able to say, “Good-bye.” There was never going to be some exquisite deathbed aphorism from Jim. I remember the hollowness. With all my heart, I hoped he had heard Father West and had chosen to “let go.” After the obligatory phone calls, I walked back into the living room.

A well-intentioned hospice nurse placed Jim's photograph on a side table between us, sat down, looked at me and said, “So tell me, how did you two meet?”

Everywhere, we learn only from those whom we love.

Goethe

It's been more than five years since Jim died. I live in the Berkshires now, and I have another cat. He is Jack, named for Jim's favorite uncle, Jack, Jim's favorite Irish artist, Jack Yeats, and for Jack McCoy on
Law and Order
.

Since Jim's death, I have roamed about in search of home: Portland, Oregon and New York City. I taught in Spain for a couple of semesters. Jack came with me. I miss Jim profoundly. I suppose the only difference from now and then is that I remember more of the healthy times than the sick ones. For sure, I am not as light-hearted or funny as I used to be, but fortunately I see more of the happy images than the cruel ones, but I can't delete them from my memory bank. I still wonder why we got this ‘bad hand.' If Jim were around, he probably could ‘spin' it for me.

I remember with profound gratitude the people who were there for him and for me and with deep disappointment the ones who weren't or who couldn't be – and members of the healthcare community are in both groups. I tend to give Western medicine a wide berth now and seek alternative approaches; but if doctors, nurses and aides remember that warmth and listening are essential to quality care – even if they cannot cure – perhaps my faith in my dad's profession will be restored.

I hope the statistics about dementia are wrong and that the researchers find a way to beat these diseases, because more often than not, dementia affects our elders, the historical memory of our society – our collective wisdom. On a more personal level, I hope I made more right choices than wrong ones for Jim and for me. But it's over, and now it's about putting one foot in front of the other and trying to find purpose and meaning.

My heart goes out to anyone and everyone who is a caregiver, with special empathy for those facing the horror of dementia. To paraphrase Jim, “You'll get through this.” Just be gentle on yourselves. As he wrote, “One must be content to be happy in small ways.”

If you would like to share your comments and reactions on
Dignifying Dementia
, you can do so at
www.dignifyingdementia.com
.

I hope that, in time, the website will become a valuable resource of shared experiences and knowledge for anyone who is caregiving for someone they love who suffers from dementia.

This book would have remained some pages in a box and never have seen the light of day had it not been for Rae Eastman's belief in its merit. And then it might have remained an undeleted file on my computer had it not been for publisher Brian O'Kane and his team at Oak Tree Press: Rita, Anne and Andrea. I thank them all for their patience, insight, sensitivity and commitment.

Thank you to them, and to Jim's devoted caregivers, compassionate doctors and nurses, patient friends, concerned family members, sensitive neighbors, generous members of the clergy and complete strangers who were there for him and for me during his illness.

There are no words to express my gratitude for all their kindness.

Author photo: Edward Acker

Elizabeth P. Tierney, Ph.D.
is a writer, trainer, consultant and lecturer in Communications and Management. She was a school administrator in the US and taught at University College Dublin, Ireland and at Cesuga in Spain. She has trained and coached students and business people, spoken at conferences and is the author of seven books, including two published by Oak Tree Press:
Show Time!
and
Selling Yourself
.