Two weeks ago, a friend told me it was time for me to have a life again. I realized it has been five years since diagnosis. Five very long years. What does that mean, I thought, to "have a life"? I think I have carved out an existence that, though very different from five or six years ago, is certainly okay. I don't think I'm depressed, though I'm very sad sometimes. Who wouldn't be? Anyway, I've been thinking about it. I know this friend meant that I should consider letting in the possibility that there might be someone special out there who could become part of my life again someday, that I could at least begin to have friendships with others of the opposite sex. I realize that I've given up on that idea and that maybe my friend is right and it is time to explore the thought. Five long years.
What triggered the conversation is that my husband was taken off hospice. They said he hadn't had a fall with serious injuries in the last 60 days and his weight seemed to have stabilized. Oh, sure, he'd had falls. The nurses and aides at his nursing home find him on the floor now and then in his room, but for the past 60 days there had been no trips to the ER for deep gashes in the forehead or for broken arms or ribs or anything. I didn't fight their removing him from hospice care. Maybe they're right, I thought, maybe he's stabilized. And the next thought was what if this goes on for several more years? How will I survive it? And then the guilt, stabbing me in the heart. How dare I be sad that he might have stabilized and might live longer than the original prediction of lifespan? For the last two weeks, I have agonized over each possibility, finally concluding that my friend was right. I have to figure out a way to have a life.
And then came last Friday morning, 12 days after the hospice decision. I knew it was coming, of course, knew it was inevitable. When they took him off hospice, the hospice provider took back the bed and wheelchair they'd provided for him, and he'd gone back to a bed and chair provided by the nursing home. That's not good or bad, just different, and different is never good around my husband, Dick. He really doesn't tolerate any kind of change very well.
I was getting ready for work, which I always refer to as "therapy I get paid for." I love my job and it is what keeps me sane. That morning I had been working from home on my email first thing and was just getting ready to get dressed and go in at 9 a.m. when the phone rang. Caller ID said "Interlochen" and my heart sank. His nursing home only calls when it's trouble. It was a nurse, Margaret, shouting that he'd fallen and they were calling an ambulance. "No!" I shouted. "Wait for me to get there. It will be less than 10 minutes."
The last four times they have insisted on an ambulance, it has been a huge ordeal for Dick and for me, and the people in the ER acted like I was nuts. That's because nobody knows what FTD or PSP are there. The last time, four months ago, Dick was agitated because he fell right before dinner and he kept insisting that he get out of their bed and go get something to eat until I sent my son to get him a sandwich. It takes hours and hours, and then they just taped up the wound anyway, the same thing the nurses at the nursing home could have done. They give him a prescription for an antibiotic each time and he refuses to take it, as he refuses to take all medications for the past year or so, saying he wants to die. And then I spend months wrangling with the insurance company, the provider, hospice, debt collectors, etc., trying to get his bills paid without it dragging me under financially. I also know that, when he's in a hospital, they have to ignore the Do Not Resuscitate (DNR) order that keeps medical workers from attempting any foolish last-minute rescue attempts (who would want to live this way any longer than necessary?) When he goes in the hospital, I have less ability to enforce Dick's wishes. That's why my first reaction was "No!"
I was at the nursing home in 10 minutes, foregoing taking a shower or brushing my teeth in the interests of getting there quickly. They'd already called the ambulance, despite my reminding them -- again -- that I am his guardian and have medical consent (as well as financial responsibility) and I have the authority to refuse medical treatment and had done so. But the ambulance is there, the same company that has debt collectors calling me constantly despite my written disputes and explanations that the insurance company says I don't owe any more, so that I have stopped answering my home phone completely. But there they are. Dick is already on the gurney and they are preparing to take him to the hospital. He doesn't want to go.
I tell them I want to see the wound before I agree to send him to the hospital. The nurse and the director of nursing are arguing with me, saying he must go because the wound is too deep. That's what they said the last four times too, but in all of those cases, the ER just taped it up and asked me why the nursing home hadn't handled it themselves. They show me and this time, I agree with them. Off he goes to the hospital in the ambulance, hungry because he fell before breakfast.
At the ER, they look him over and agree he needs stitches. The doctor says they should do a scan to check for internal bleeding. Inwardly I groan. Here we go again, another useless scan of his brain. But Dick protests this time and just says, "No scans!" Surprisingly, this doctor listens to him and doesn't insist. I breathe again, relieved. It only takes 4 hours in the ER this time. The doctor who puts in the 22 stitches is calm and competent, focused on her beautiful stitching, and I admire her work. There are 2 high school students who are there to watch, deciding during one of their high school courses whether they want to become a nurse or doctor. The doctor uses his stethoscope and asks if anyone else has told me he has a rattle in his lungs. The start of pneumonia?
When they're done, I put Dick in the car for the trip back to the nursing home. I am completely exhausted, my adrenaline level coming back down. I call hospice and they agree to come out for a re-evaluation later that day. That night, they start a 24-hour watch for him, because he insists on continuing to get up on his own and go to the bathroom. It won't be long until the next fall kills him. Or maybe he's getting pneumonia?
There is not going to be a happy ending with FTD. I know that. I dread the end but I also welcome it. How do I have a life again?
Wednesday, February 25, 2009
Tuesday, February 24, 2009
March 2003 - The Runaway
I had been invited to a conference in Palm Springs, where I was to receive a major business honor. I flew there on Friday night with four of the top executives of the company that I owned. On Saturday night was a black tie celebration in our honor, something we had all worked hard for and were looking forward to celebrating. And then we would come home Sunday afternoon. I was worried about going, because my husband Dick and thirteen-year-old son Kevin had not been getting along well the previous week. Dick had been grumpy and yelling at Kevin over silly little things. But I needed to go and Dick wanted to stay home with Kevin.
On Saturday morning, I called Dick, as I did at least once a day whenever I was out of town. When he picked up the phone, he said only, "I... don't.... trust.... you," in a very strange voice. He was odd and scary and my only thought was that I had to get home to make sure Kevin was okay. So I got on the next flight home from Palm Springs, leaving my team in Palm Springs to accept the award on my behalf. Dick picked me up when I landed and acted as if nothing were wrong at all. He couldn't understand why I had come home early from the trip.
It was the next day, Sunday morning, when my world was shaken again. We woke up in the morning in our bedroom and could hear Kevin watching TV in the family room. Dick started that morning repeating over and over, "I just don't trust you." We were still in the room when Dick went into our closet, pulled out a suitcase, and started throwing random items from his side of the closet into the suitcase. I asked him what he was doing and he said, "I'm leaving and I'm never coming back." The things he was throwing in the suitcase made no sense for someone thinking of leaving forever; they were just random things from his closet. I went over to him and touched his arm to get his attention and said, "Dick, don't do this. Tell me what's wrong. If you walk out our bedroom door this way, it will be a moment Kevin will never forget. Don't do that to him, please."
I should point out that, in our 17 years of marriage, we had never had a fight, barely a disagreement even. Our marriage wasn't perfect, but we resolved our differences and moved on. We had a lot of fun, and we laughed a lot. We were so compatible. This incident of his saying, "I don't trust you," and his picking up a suitcase to leave were unbelievably foreign, unusual, unreal. But all I could think about was Kevin and the impact of his father's behavior on him. So I begged Dick not to leave our room holding that suitcase. He said, "I don't care," and he opened the door.
Kevin saw him immediately and ran over to him. "Where are you going, Dad?" Dick told him, "I'm leaving and I'm never coming back." Kevin started crying, begging him not to leave. But Dick just went to his car and left. Kevin and I didn't know what to think, what to do. I tried calling Dick's cellphone but he didn't answer it. I called his best friend DV and asked him to try to reach Dick and figure out what was happening and where he was. At this time, Dick had not been seen by a doctor and I had no idea whether there was something medically wrong. I suspected he might be depressed but frontotemporal dementia wasn't even a phrase I had ever heard. So what was I to do?
About 30 minutes after he left, Dick called me and said he was coming home because he'd forgotten his heart pills and vitamins. Thank goodness, I thought, he's not suicidal then. I told Kevin his Dad was coming back to get something. We had already noticed that Dick had forgotten to take his "DayTimer," the organizer notebook where he always kept every bit of information important to him. He never went anywhere without that DayTimer and he wrote down everything in it. In fact, he once told me that we HAD to do something because he'd already written in his DayTimer that we were going to do it. It was so important to him, and he'd forgotten to take it with him. That's the reason I'd been worried about suicide, when I'd found the DayTimer on the kitchen counter.
As soon as he heard Dick was coming back to get his pills, Kevin ran upstairs. He came back downstairs and put a picture of himself into Dick's DayTimer and wrote a note in the DayTimer for that day that said, "Dad, please keep this picture with you so you won't forget me."
Dick came home, grabbed his pills, and took the DayTimer that Kevin handed him. And then he left again, shrugging off Kevin's attempts to grab his arm and beg him to stay. That night I struggled to remain calm as I tried to keep Kevin's routine as normal as possible. I went online to check his cellphone records to see whether he was calling anyone, but he wasn't. I watched his credit card to see whether I could find a clue about where he had gone. Nothing yet. The next day was Monday. I took Kevin to school and I went to work, believing that maybe he had gone and not knowing what to do about that. His friend DV was also trying to reach him on his cellphone. We all just assumed he was depressed and that he would resurface soon. The previous Christmas Eve he had told us he was leaving forever, but he returned an hour later after buying light bulbs at Home Depot.
On Monday afternoon, Dick called me.... from home. He was back. He says he just went to a hotel room to watch the football game on Sunday. The hotel charge later showed up on his credit card. I still have no idea what really happened that day. But it changed our lives forever.
On Saturday morning, I called Dick, as I did at least once a day whenever I was out of town. When he picked up the phone, he said only, "I... don't.... trust.... you," in a very strange voice. He was odd and scary and my only thought was that I had to get home to make sure Kevin was okay. So I got on the next flight home from Palm Springs, leaving my team in Palm Springs to accept the award on my behalf. Dick picked me up when I landed and acted as if nothing were wrong at all. He couldn't understand why I had come home early from the trip.
It was the next day, Sunday morning, when my world was shaken again. We woke up in the morning in our bedroom and could hear Kevin watching TV in the family room. Dick started that morning repeating over and over, "I just don't trust you." We were still in the room when Dick went into our closet, pulled out a suitcase, and started throwing random items from his side of the closet into the suitcase. I asked him what he was doing and he said, "I'm leaving and I'm never coming back." The things he was throwing in the suitcase made no sense for someone thinking of leaving forever; they were just random things from his closet. I went over to him and touched his arm to get his attention and said, "Dick, don't do this. Tell me what's wrong. If you walk out our bedroom door this way, it will be a moment Kevin will never forget. Don't do that to him, please."
I should point out that, in our 17 years of marriage, we had never had a fight, barely a disagreement even. Our marriage wasn't perfect, but we resolved our differences and moved on. We had a lot of fun, and we laughed a lot. We were so compatible. This incident of his saying, "I don't trust you," and his picking up a suitcase to leave were unbelievably foreign, unusual, unreal. But all I could think about was Kevin and the impact of his father's behavior on him. So I begged Dick not to leave our room holding that suitcase. He said, "I don't care," and he opened the door.
Kevin saw him immediately and ran over to him. "Where are you going, Dad?" Dick told him, "I'm leaving and I'm never coming back." Kevin started crying, begging him not to leave. But Dick just went to his car and left. Kevin and I didn't know what to think, what to do. I tried calling Dick's cellphone but he didn't answer it. I called his best friend DV and asked him to try to reach Dick and figure out what was happening and where he was. At this time, Dick had not been seen by a doctor and I had no idea whether there was something medically wrong. I suspected he might be depressed but frontotemporal dementia wasn't even a phrase I had ever heard. So what was I to do?
About 30 minutes after he left, Dick called me and said he was coming home because he'd forgotten his heart pills and vitamins. Thank goodness, I thought, he's not suicidal then. I told Kevin his Dad was coming back to get something. We had already noticed that Dick had forgotten to take his "DayTimer," the organizer notebook where he always kept every bit of information important to him. He never went anywhere without that DayTimer and he wrote down everything in it. In fact, he once told me that we HAD to do something because he'd already written in his DayTimer that we were going to do it. It was so important to him, and he'd forgotten to take it with him. That's the reason I'd been worried about suicide, when I'd found the DayTimer on the kitchen counter.
As soon as he heard Dick was coming back to get his pills, Kevin ran upstairs. He came back downstairs and put a picture of himself into Dick's DayTimer and wrote a note in the DayTimer for that day that said, "Dad, please keep this picture with you so you won't forget me."
Dick came home, grabbed his pills, and took the DayTimer that Kevin handed him. And then he left again, shrugging off Kevin's attempts to grab his arm and beg him to stay. That night I struggled to remain calm as I tried to keep Kevin's routine as normal as possible. I went online to check his cellphone records to see whether he was calling anyone, but he wasn't. I watched his credit card to see whether I could find a clue about where he had gone. Nothing yet. The next day was Monday. I took Kevin to school and I went to work, believing that maybe he had gone and not knowing what to do about that. His friend DV was also trying to reach him on his cellphone. We all just assumed he was depressed and that he would resurface soon. The previous Christmas Eve he had told us he was leaving forever, but he returned an hour later after buying light bulbs at Home Depot.
On Monday afternoon, Dick called me.... from home. He was back. He says he just went to a hotel room to watch the football game on Sunday. The hotel charge later showed up on his credit card. I still have no idea what really happened that day. But it changed our lives forever.
June 2001 - The first fall
It was the summer of 2001 and it was to be the most fabulous vacation for the three of us. Dick, Kevin and I flew to London. We were going to spend a few days in London, take the train through the Chunnel to Brussels and then Luxembourg, where my German friend Gaby would meet us. After a night at her house in Riol, Germany, we were going to drive with her entire family to a small village on the coast in Italy called Eraclea Mare, where we would spend 10 days on the beach with little contact with the outside world. But this was just the beginning and we had just landed in London. We took the train from the airport to Victoria Station and got on the escalator to go up to street level, where we would catch a cab to our hotel. This is another of those moments that Kevin and I will always remember.
Dick stepped on the escalator first, followed by Kevin and then me. Dick had our largest bag with him. About halfway up, Dick tumbled backwards, landing on Kevin, who fell back onto me. We were all sprawled upside down on a busy escalator. I screamed and someone at the bottom of the escalator hit a big red button to stop the escalator. I never noticed those buttons before but ever since that day, I am conscious of them every time I step on an escalator. And this was the last day that Kevin or I ever were downhill from Dick on an escalator.
People helped us off the escalator. Kevin and I were scratched and bruised and scared. Fortunately, Kevin had on a heavy backpack and that had protected his head and back in the fall., but we still were pretty shook up and bleeding. Dick had nothing at all to show for the accident and joked that he had it okay, because Kevin protected him from the fall. Kevin was 11 at the time and didn't see the humor, and neither did I. I was annoyed by Dick's seeming indifference to our suffering and was grumpy for days about that. It was one of those things that always just stuck with me. It didn't make sense until years later, when the doctor said "Progressive Supranuclear Palsy" and I found out that it normally starts with a backwards fall as the first sign. I wonder.....
Dick stepped on the escalator first, followed by Kevin and then me. Dick had our largest bag with him. About halfway up, Dick tumbled backwards, landing on Kevin, who fell back onto me. We were all sprawled upside down on a busy escalator. I screamed and someone at the bottom of the escalator hit a big red button to stop the escalator. I never noticed those buttons before but ever since that day, I am conscious of them every time I step on an escalator. And this was the last day that Kevin or I ever were downhill from Dick on an escalator.
People helped us off the escalator. Kevin and I were scratched and bruised and scared. Fortunately, Kevin had on a heavy backpack and that had protected his head and back in the fall., but we still were pretty shook up and bleeding. Dick had nothing at all to show for the accident and joked that he had it okay, because Kevin protected him from the fall. Kevin was 11 at the time and didn't see the humor, and neither did I. I was annoyed by Dick's seeming indifference to our suffering and was grumpy for days about that. It was one of those things that always just stuck with me. It didn't make sense until years later, when the doctor said "Progressive Supranuclear Palsy" and I found out that it normally starts with a backwards fall as the first sign. I wonder.....
December 2002 - There is something wrong with Dad
Looking back now, I know it wasn't the first sign of the problem. But it was the day that my son Kevin and I knew, for a fact, that there was something wrong with my husband Dick. To someone looking in from the outside, it might not have been so startling. But within families, people know each other so well, and they sense changes in each other much earlier than anyone else can. Anyway, here's the simple story of what happened:
It was the morning of Christmas Eve 2002. Kevin, then 12 years old, and I were in the kitchen baking Christmas cookies together. It was going to be a wonderful Christmas holiday. My mother and stepfather, my brother and his wife and his young kids, were all coming over to spend the day together, opening presents and just being together. The next day, Christmas, would be a quiet day with just our own little family. And the day after Christmas, our friends from Germany were due to arrive to spend 10 days with us on a vacation in Mexico. So this particular morning was to be the start of a relaxing 10-day holiday away from work with all of the people I loved most in the whole world.
While Kevin and I baked cookies, Dick watched TV in the adjoining family room. I was slightly annoyed that he wasn't joining us in the kitchen, but this had become more normal lately. Dick had been watching more and more television. He was 62 years old then and seemed to have found one excuse or another not to play as much golf as he used to. Instead, he watched television constantly. Well, today, I was not going to worry about that. I shrugged off my annoyance and focused on creating a lovely, memorable holiday for my only child, the true love of my life.
Just as we were putting the cookies on the cookie sheet, I saw Dick stand up in the family room and reach for his car keys. "Where are you going?" I asked. "Yeah, Dad, you can't go anywhere now; the family's on the way over to open presents," Kevin added. Dick just glared at us and said something along the lines of, "I'm leaving and I'm never coming back." Thinking this was some kind of sick joke from my husband, who had always been a teaser, I said, "Come on, Dick, where are you really going? Can't it wait? We've still got a lot to do before the family arrives for Christmas Eve." Dick just walked out the back door.
My heart sank. Outwardly, I remained calm for Kevin's sake (the first of many times in the last six years that I have put on the outwardly calm mask). But inside, I was in turmoil. No marriage is perfect and we'd had a few times when we hadn't seen eye-to-eye on everything, but in our 16 years of marriage, there hadn't been a sign of trouble that would cause him to talk about leaving. This made no sense. Kevin, on the verge of tears, wanted to know, "Where's Dad? Will he get back in time?" So, for Kevin's sake, I laughed it off and told him his Dad would be back in plenty of time, not to worry. But I was simply hoping I was right. I heard every single second tick off on the clock, trying to figure out what to do if he didn't come back in an hour, or two, or whenever I would not be able to stand it any more.
Then, an hour later, I saw his car pull into the garage, as the last of the cookies were coming out of the oven. With a mixture of relief and fury, I asked him where he had been. Kevin and I both remember clearly his next words. "Home Depot. I just had to get some light bulbs. Why?" He said this with a look of such innocence and perplexity. He had no idea what he'd just put us through. I pulled him into the bedroom and demanded that he go apologize to Kevin, and he just looked at me and said, "Why? All I did was go to Home Depot." He sat down to watch more TV.
When I went back to the kitchen, Kevin said, "There's something wrong with Dad." And I knew he was right.
It was the morning of Christmas Eve 2002. Kevin, then 12 years old, and I were in the kitchen baking Christmas cookies together. It was going to be a wonderful Christmas holiday. My mother and stepfather, my brother and his wife and his young kids, were all coming over to spend the day together, opening presents and just being together. The next day, Christmas, would be a quiet day with just our own little family. And the day after Christmas, our friends from Germany were due to arrive to spend 10 days with us on a vacation in Mexico. So this particular morning was to be the start of a relaxing 10-day holiday away from work with all of the people I loved most in the whole world.
While Kevin and I baked cookies, Dick watched TV in the adjoining family room. I was slightly annoyed that he wasn't joining us in the kitchen, but this had become more normal lately. Dick had been watching more and more television. He was 62 years old then and seemed to have found one excuse or another not to play as much golf as he used to. Instead, he watched television constantly. Well, today, I was not going to worry about that. I shrugged off my annoyance and focused on creating a lovely, memorable holiday for my only child, the true love of my life.
Just as we were putting the cookies on the cookie sheet, I saw Dick stand up in the family room and reach for his car keys. "Where are you going?" I asked. "Yeah, Dad, you can't go anywhere now; the family's on the way over to open presents," Kevin added. Dick just glared at us and said something along the lines of, "I'm leaving and I'm never coming back." Thinking this was some kind of sick joke from my husband, who had always been a teaser, I said, "Come on, Dick, where are you really going? Can't it wait? We've still got a lot to do before the family arrives for Christmas Eve." Dick just walked out the back door.
My heart sank. Outwardly, I remained calm for Kevin's sake (the first of many times in the last six years that I have put on the outwardly calm mask). But inside, I was in turmoil. No marriage is perfect and we'd had a few times when we hadn't seen eye-to-eye on everything, but in our 16 years of marriage, there hadn't been a sign of trouble that would cause him to talk about leaving. This made no sense. Kevin, on the verge of tears, wanted to know, "Where's Dad? Will he get back in time?" So, for Kevin's sake, I laughed it off and told him his Dad would be back in plenty of time, not to worry. But I was simply hoping I was right. I heard every single second tick off on the clock, trying to figure out what to do if he didn't come back in an hour, or two, or whenever I would not be able to stand it any more.
Then, an hour later, I saw his car pull into the garage, as the last of the cookies were coming out of the oven. With a mixture of relief and fury, I asked him where he had been. Kevin and I both remember clearly his next words. "Home Depot. I just had to get some light bulbs. Why?" He said this with a look of such innocence and perplexity. He had no idea what he'd just put us through. I pulled him into the bedroom and demanded that he go apologize to Kevin, and he just looked at me and said, "Why? All I did was go to Home Depot." He sat down to watch more TV.
When I went back to the kitchen, Kevin said, "There's something wrong with Dad." And I knew he was right.
Beginning to write it down
It has been five long years since diagnosis and six since I knew for certain there was something wrong with him. I have often thought of writing about this journey but have found various reasons not to do it. I was too busy, or too devastated, or just wanted a moment's peace from it. But somehow the time seems right now. So I begin.
Perhaps my son, now a teenager, will someday be able to read these and learn from them what his mother was really dealing with. I want him to know that my love for him is what carried me through these years. He amazes me with his courage and the strength with which he has survived these difficult years.
People I meet suggest I write a book and then look at me with some hesitation and say, "Well, maybe later, when it's all over, you'll want to do that." And I think, no, when this is over, I hope not to remember how horrible this was. Somehow, I know that if I don't write some of it down now, I never will.
Perhaps my son, now a teenager, will someday be able to read these and learn from them what his mother was really dealing with. I want him to know that my love for him is what carried me through these years. He amazes me with his courage and the strength with which he has survived these difficult years.
People I meet suggest I write a book and then look at me with some hesitation and say, "Well, maybe later, when it's all over, you'll want to do that." And I think, no, when this is over, I hope not to remember how horrible this was. Somehow, I know that if I don't write some of it down now, I never will.
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