Tuesday, May 6, 2014

Three Bittersweet Days

Imagine my surprise when I answered the phone last Wednesday, April 30, and Gordon's ICU nurse told me that my husband wanted me to visit him. I hesitated and stammered, "He wants what?" "He wants his wife, Katinka, to visit. Are you Katinka?" she asked.

Thus began the strangest three days of my life. For eighteen years, Gordon has had Frontotemporal Dementia. He hasn't cared at all about me or our children. The consequences of his illness have wreaked emotional and financial devastation upon us. The last thing I expected to hear is that Gordon wanted to see me. After all, no one gets better from Frontotemporal Dementia.

April was a difficult month. Gordon was in the ER twice, and each visit was a battle, though last week's was especially difficult. Gordon was agitated, combative, could not walk, initially could not talk, and did not know any of us. This happened out of the blue around 6:00 PM on Monday, April 28, Grant's birthday. It took both Gavin and Grant to get Gordon in the car and to the ER. Gordon arrived naked except for socks and a t-shirt that he kept trying to remove. He was oblivious to the fact that he was wearing no underwear. 

Monday night in the ER was a nightmare with Gordon struggling mightily. My sons and I had to hold down Gordon's arms for hours. Finally, Gordon was admitted to the ICU at two in the morning, where I signed a DNR, my first and, I hope, my last.

Tuesday was not much better. Gordon's hands were wrapped in gauzy boxing gloves to keep him from pulling out his IV's. He rarely made sense, and he was very unstable. However, the doctor said the worst was over, and we needed to make plans for after the hospital. I went from signing a DNR to planning Gordon's release in less than 15 hours. Way too much to process emotionally on only three hours of sleep.

Then came Wednesday and the nurse's phone call. When I got to the hospital, I was confronted with the man I married. Yes, he still had dementia and was not oriented to place nor time, believing we were in Ohio half of the time, and, yes, he was suffering from ICU psychosis and was sure it was raining in his room and that a song called "Sweet, Celeste" was playing non-stop. He showed the nurse, Grant, and me the "water damage" from the rain in the room, and he sang to me the song that he heard and wanted me to sing along. BUT in addition to all his normal dementia behaviours, this man was talkative, affectionate, sharing, joking, and asking about our children (he knew nothing about their education, jobs, or relationships). He was delighted by everything he heard. He was the man I married. Even his voice was the voice of the man I fell in love with, a kind, cheery, loving voice completely at odds with the cold, callous, cruel voice of the last eighteen years. What happened?

Then late in the afternoon, it seemed like Gordon was sundowning, slipping back into his Frontemporal Dementia self; however, when Grant arrived, he perked back up. He was the dad Grant had not seen since he was six years old. It was delightful, it was mystifying, it was terrifying. When we left that day, Gordon told me he loved me and that he was getting well for me because he didn't like me to worry. I cried all the way home.

Gordon was released on Thursday, May 1, and needed a walker to get around. He was SO happy to be home and so grateful for my help. He didn't hit my hands once, nor did he swear at me or insult me. Gordon told me that he wanted to get well enough to go to our sons' weddings this summer, and then he looked a bit uncertain, as if he had a fleeting awareness of the hell he, as a consequence of his dementia, has put us through, and said, "If they want me to attend." I assured him that they did, and he grinned happily.

Friday, Gordon maintained his cheery demeanor. He watched a movie with Grant and me, something he hadn't done in many years, and he discussed it with us. I risked telling Gordon about a chapter I wrote being included in a book about to be published, and he was delighted for me, just like he always was in our first sixteen years together, and decidedly the opposite of his insults of the last eighteen years. Just before going to bed, Gordon told me: "The kids are the most important things in the world, Katinka, after you." And then he smiled at me. I wrote it down after he said those words because I am terrible at remembering things verbatim, and I very much wanted for our children to have his words exactly as he said them.

Let me be clear--in every other way, Gordon still evidenced his dementia. He remained confused about time and place, could not follow complex sentences, was confused when confronted with new information, but in the one small part of his brain that dealt with the kids and me, he was his "real" self, and neither Grant nor I knew what to make of it. 

In my book Dueling With Dementia: Not The Love Story We Planned," I discuss echo moments, where the person with dementia seems to be his/her old self for a few moments; but that is all it ever is: a few moments (in my experience) or a few hours (anecdotal stories I've been told about). I have hated those moments and have appreciated that they have been very few. But what to make of three days of Gordon's personality reverting to the personality of the man I married and had children with? My greatest hope was that this change would last until after Gavin visited on Saturday and Amy on Sunday.

But my greatest hope was dashed. Saturday, before Gavin arrived, Gordon began to slip back into the cranky, mean, indifferent individual that he's been since Frontotemporal Dementia put in its unwanted appearance. The loud swearing is back as well as the animal noises, and Gordon is back to batting my hands away if I try to help. Also, he understands even less than before his hospital visit.

What caused these three days? While in them, I thought perhaps they were a gift that God was giving the kids and me before Gordon died--a perfect movie ending, right? After Gordon was once again his Frontotemporal Dementia self, I thought it was a cruel joke, but who or what could do something so heartbreakingly hurtful? The brain is a mysterious organ. I doubt I shall ever know what caused the three days.

Am I glad that the three days happened? On balance, yes, because I had begun to doubt my memories of the real Gordon, the man I loved, I married, and with whom I had children. And I am grateful that Grant got a glimpse of the dad he never really knew, being only six years old when Gordon began to change. But I am sad, too, because it highlighted how much the kids, Gordon, and I have lost due to Gordon's dementia. Our lives would have been so different if Gordon had stayed well. How? I don't know, but very different from what they are today because so much of what Amy, Gavin, Grant, and I are is a consequence of and a reaction to dealing with Gordon's dementia.

Overall, and now in hindsight, the three days will live in my memory as three bittersweet days, for which I am most grateful, but also very sad.

Take care,

Kate

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