Yesterday, we took Dick to our dentist. He had been able to say our dentist's name last weekend and indicated his tooth hurt. The facility took him there in their van and left an aide to sit with him the whole time. Kevin and I were there too. The dentist couldn't find anything at all, although he probed and poked all over the place. So we didn't do anything, and the dentist, bless his heart, didn't charge us. While we were waiting in his waiting room for the facility's van to pick him and the aide up again. I went over to Dick to say goodbye and leave for work. He touched my hand and said, "money for lunch?" He wanted me to give him money to pay for lunch for them on the way back. I nearly cried. It was what he would have done 4 or 5 years ago. He hasn't had a wallet or even asked about one for a couple years, at least.
Then he said something else, but I just couldn't understand it. Most of the time now we can't understand what he's trying to say, but he keeps trying. He doesn't get upset or frustrated or anything, just keeps trying.
Today he called my phone number 4 times during the day but I didn't answer it. He left unintelligible messages for me. So I stopped by to see him on my way home. After a couple minutes, he said something to me and I leaned in close. I had him repeat it a few times and heard 3 words, the first one "I" and the last one "you." He said the middle word again. "Forgive?" I asked him. He nodded yes. He forgives me. Then he said, "I love you." And he reached up to wipe a tear from his face. He was crying! Then he reached for my hand and just held it for several minutes.
Wow. I have not heard anything resembling an emotion from him, other than anger, for at least 5 years. I thought I would never stop crying tonight. Where did this come from? Does he know somewhere deep inside that he's approaching the end? Can he really think like this now? After all the craziness of the last several years? I think all the sadness on my part is thinking that maybe he does realize what's happening.
Wednesday, July 1, 2009
Monday, June 15, 2009
June 15 -- The New Normal
We've now had the weekend to adjust. Five years into this journey of frontotemporal dementia, I am sensing a sort of rhythm to it. I adjust Dick's care to his current level of functioning, he gradually loses abilities of various kinds for a period of time and then one day suddeenly loses a whole lot of abilities all at once, I adjust Dick's care to the new lower level of functioning, and we repeat it. The length of time between the adjustments is shrinking, though, and I am finding myself adjusting more and more often.
This is not an easy task. Shortly after diagnosis, over five years ago, I found a secured assisted living residence for Dick. At the time, he was walking constantly and the place I found was perfect because the hallways were arranged in a square so he could walk laps. He wore a pedometer to count his steps and he walked at least 10,000 steps a day around those hallways. I also hired a home care worker, Dena, who would pick him up every weekday morning and take him out to eat and shop and run errands. I gave him a small allowance then and he could still use his ATM card to draw money out of the account I set up for him. He also had a phone and talked to his friends for hours at a time. He loved to go out to eat and took Dena with him every day for lunch. He also had our parrot for company. Dick had some obsessive-compulsive tendencies even early on, and one of them was that he constantly cleaned the bird's cage. This was good for the bird and she was good company for him, so it was a good thing for both of them. He also loved to vacuum so his little apartment there was always clean because he vacuumed several times a day.
This situation worked for 18 months or so, with only gradual changes in his functioning. At one point, I had to replace his favorite recliner with a new sturdy la-z-boy that had an electrical lift function because Dick began to just flop backwards into his chair, mindless of the fact that it would topple backwards. We had a few incidents where the entire chair flopped over backwards and he landed on his head on the floor, helpless to get up, and was found by the staff that way. So the new chair came into his life and he loved that.
Another adjustment in the early days was the restriction of his independent shopping. Dena, his helper, told me at one point that he was getting more and more sneaky about one particular shop. He was having Dena park at one shop and then, when he thought she wasn't looking, he would go into a nutritional shop and buy a LOT of nutritional supplies -- hundreds of dollars worth -- so that had to stop. Then she started telling me about trips to the post office where he would insist that she wait in the car while he took brown envelopes in that he was apparently mailing to someone. We found out later he was mailing money in $20 bills -- a total of nearly $10,000 before we stopped it -- to some of his friends. I did finally get it all back, I think. Of course, I cut off his allowance and bank account access completely at that point. I also had to go back to the judge to get his blessing for that. Still, I gave Dick a little spending money and allowed him to shop because it was at least an activity for him that he seemed to like. That worked until the day he shoplifted while our teenage son was allowing him to be at Walmart -- we had to take back the thing Dick had taken and apologize to the store -- and then his shopping ceased altogether.
This is not an easy task. Shortly after diagnosis, over five years ago, I found a secured assisted living residence for Dick. At the time, he was walking constantly and the place I found was perfect because the hallways were arranged in a square so he could walk laps. He wore a pedometer to count his steps and he walked at least 10,000 steps a day around those hallways. I also hired a home care worker, Dena, who would pick him up every weekday morning and take him out to eat and shop and run errands. I gave him a small allowance then and he could still use his ATM card to draw money out of the account I set up for him. He also had a phone and talked to his friends for hours at a time. He loved to go out to eat and took Dena with him every day for lunch. He also had our parrot for company. Dick had some obsessive-compulsive tendencies even early on, and one of them was that he constantly cleaned the bird's cage. This was good for the bird and she was good company for him, so it was a good thing for both of them. He also loved to vacuum so his little apartment there was always clean because he vacuumed several times a day.
This situation worked for 18 months or so, with only gradual changes in his functioning. At one point, I had to replace his favorite recliner with a new sturdy la-z-boy that had an electrical lift function because Dick began to just flop backwards into his chair, mindless of the fact that it would topple backwards. We had a few incidents where the entire chair flopped over backwards and he landed on his head on the floor, helpless to get up, and was found by the staff that way. So the new chair came into his life and he loved that.
Another adjustment in the early days was the restriction of his independent shopping. Dena, his helper, told me at one point that he was getting more and more sneaky about one particular shop. He was having Dena park at one shop and then, when he thought she wasn't looking, he would go into a nutritional shop and buy a LOT of nutritional supplies -- hundreds of dollars worth -- so that had to stop. Then she started telling me about trips to the post office where he would insist that she wait in the car while he took brown envelopes in that he was apparently mailing to someone. We found out later he was mailing money in $20 bills -- a total of nearly $10,000 before we stopped it -- to some of his friends. I did finally get it all back, I think. Of course, I cut off his allowance and bank account access completely at that point. I also had to go back to the judge to get his blessing for that. Still, I gave Dick a little spending money and allowed him to shop because it was at least an activity for him that he seemed to like. That worked until the day he shoplifted while our teenage son was allowing him to be at Walmart -- we had to take back the thing Dick had taken and apologize to the store -- and then his shopping ceased altogether.
Friday, June 12, 2009
June 9 - The Worst Fall Yet
Kevin and I got back home late yesterday afternoon from a two-week driving trip together through Bavaria and Austria. It was such a wonderful trip and I'm so glad to have had that time with my son before we have to deal with so much reality. We had left Dick in good hands with several people watching over him. He had a fall the day after we left and had 8 stitches in his head. He was okay, though, and as usual, it didn't seem to really faze him.
I normally try to jump right back into a normal sleep schedule after a trip overseas, but last night I just couldn't do it and went to bed at 7. I woke up again about 1:30 but figured maybe I could nap again before morning. It wasn't in the cards. Fortunately, I was awake when the nursing home called at 4. Dick had fallen again and they had already sent him to the ER. I got there just in time to stop the CT scan and other stuff the doc there wanted to do. I always have to insist that such things not be done, because they would upset him, cost a lot of money, and make absolutely no difference to the outcome of this horror we are living. He needed 11 stitches this time. Apparently, there was a lot of blood everywhere, even more than the previous times. He was all cleaned up by the time I got to the hospital, except for his underwear which had blood, urine and feces all over them. Apparently, nobody had thought to put new ones on him, though they put him in a new hospital gown at least.
He is so much worse than he was 2 weeks ago when we left. Dena, our friend and helper, said she'd noticed some of the changes, too, but hadn't wanted to call me the last couple days because there wasn't anything I'd have been able to do about it. His eyes now go different directions from each other. The eyes have always been the weird thing, of course, and they wandered involuntarily, but they always wandered together before. He also could not say even one word to me. He tried a few times, but all that came out was a very faint garble that I couldn't figure out at all. He could nod his head yes or no, though, in answer to a question. He was so tired, but Dena says this has been getting this way the last few days so it wasn't a result of this fall. or of being tired
I don't know what to do. He is clearly beyond the ability of this nursing home to help him. I wonder if he can go into the hospice facility now, but I wonder how I can pay for that. Maybe medicare helps with that? I'm going to call hospice in a few minutes and see if we can meet today about him and figure out a new plan. If I bring him home, I can't afford full-time care for him, although maybe this is a job Kevin can do. I think our long-term care insurance will pay family members to do the work if they go through some sort of training first. Kevin, Dena and I could do shifts, with hospice helping out. I don't think he can do this much longer and it might be time for a new arrangement. I know my friends have talked me out of it before, but maybe it's different with Kevin home now for the summer. I think Dick is now beyond getting up to go to the bathroom and whether I can bring him home depends on whether he will agree to diapers so we can keep him clean. Hospice would send someone to bathe him and otherwise help us out.
I just feel so awful every time I leave him at the nursing home, knowing he is going to fall again and we are going to go through this nightmare again. I am also tired of fighting with the ambulance and ER's about bills. I can not believe how awful this has gotten.
Maybe I'm just tired and can think again later today.
I normally try to jump right back into a normal sleep schedule after a trip overseas, but last night I just couldn't do it and went to bed at 7. I woke up again about 1:30 but figured maybe I could nap again before morning. It wasn't in the cards. Fortunately, I was awake when the nursing home called at 4. Dick had fallen again and they had already sent him to the ER. I got there just in time to stop the CT scan and other stuff the doc there wanted to do. I always have to insist that such things not be done, because they would upset him, cost a lot of money, and make absolutely no difference to the outcome of this horror we are living. He needed 11 stitches this time. Apparently, there was a lot of blood everywhere, even more than the previous times. He was all cleaned up by the time I got to the hospital, except for his underwear which had blood, urine and feces all over them. Apparently, nobody had thought to put new ones on him, though they put him in a new hospital gown at least.
He is so much worse than he was 2 weeks ago when we left. Dena, our friend and helper, said she'd noticed some of the changes, too, but hadn't wanted to call me the last couple days because there wasn't anything I'd have been able to do about it. His eyes now go different directions from each other. The eyes have always been the weird thing, of course, and they wandered involuntarily, but they always wandered together before. He also could not say even one word to me. He tried a few times, but all that came out was a very faint garble that I couldn't figure out at all. He could nod his head yes or no, though, in answer to a question. He was so tired, but Dena says this has been getting this way the last few days so it wasn't a result of this fall. or of being tired
I don't know what to do. He is clearly beyond the ability of this nursing home to help him. I wonder if he can go into the hospice facility now, but I wonder how I can pay for that. Maybe medicare helps with that? I'm going to call hospice in a few minutes and see if we can meet today about him and figure out a new plan. If I bring him home, I can't afford full-time care for him, although maybe this is a job Kevin can do. I think our long-term care insurance will pay family members to do the work if they go through some sort of training first. Kevin, Dena and I could do shifts, with hospice helping out. I don't think he can do this much longer and it might be time for a new arrangement. I know my friends have talked me out of it before, but maybe it's different with Kevin home now for the summer. I think Dick is now beyond getting up to go to the bathroom and whether I can bring him home depends on whether he will agree to diapers so we can keep him clean. Hospice would send someone to bathe him and otherwise help us out.
I just feel so awful every time I leave him at the nursing home, knowing he is going to fall again and we are going to go through this nightmare again. I am also tired of fighting with the ambulance and ER's about bills. I can not believe how awful this has gotten.
Maybe I'm just tired and can think again later today.
June 11 -- Round the Clock Hospice Care for One Day
I barely slept Wednesday night. Of course, I was worried about having left Dick with the hospice nurse who barely seemed like she should be left with patients. And there was a new band of severe thunderstorms every hour or two all night. That was all on top of the fact that I'd barely slept for the previous 48 hours and was still recuperating from jetlag.
I finally got myself out of bed Thursday morning and got to the nursing home, knowing there would be a shift change of the round-the-clock staff from hospice and wanting to be there to greet the person who would stay with him for the day so that I could go back to work. Could not figure out how I could possibly manage to think at work, but I just used up all of my vacation time and don't have a lot of sick time accumulated yet. Still, I needed to see Dick and meet the new caregiver for the day shift. Our regular hospice nurse, Mark, who has visited Dick every week for months now, had explained that there would be a nurse with him during the night and a certified nursing aide with him during the daytime hours.
When I got there, Pamela, who had seemed such a nightmare the night before, actually seemed to have everything relatively under control. She told me she had changed his briefs twice during the night and that otherwise, he had slept pretty well. It was almost time for breakfast so she went to look for an aide who could lift him into his chair to go to the dining room.
Dick could only nod yes or no to my questions, but it was clear that he understood the questions and knew what he wanted to say, just couldn't get the words out. I took the opportunity, with her out of the room and his new roommate apparently already at breakfast, to tell Dick what I'd realized the night before I needed to tell him: "You have been a wonderful husband. I know you love me, even if you haven't been able to tell me that lately. I love you too and I have never loved anyone else and I am going to miss you so much. Kevin loves you, too, and you have been the world's best father to him. He's grown into a fine young man and you should be proud that you've helped to make him that way. I know you told someone yesterday that you want to die. I don't blame you for that. The doctors tell me you're not going to get better. There's nothing they can do. So when you are ready to go, whether it's now or a year from now, I will understand. I'm going to be here to take care of you as long as you need me. I love you." Dick listened carefully. He can no longer really see but he he can hear. He just nodded his head. He didn't seem to emotionally react, but I know he heard me and understood me. He was pointing to his face, so I went to his old room and got his shaver to help him shave.
At that time, Pamela, the nurse, came back in with an aide, and we got Dick into his wheelchair and to the dining room. I sat down to feed him and Pamela sat to one side, acting like I was in her way. He was able to eat a little bit of oatmeal, half a slice of bread, and a little bit of milk. When we took him back to his room, Mark -- his regular hospice nurse -- was there to check on him. I really like Mark a lot. He is caring and warm and competent. He touches Dick when he talks to him and he speaks directly to him with respect. I was relieved to see him. About that time, the new daytime caregiver also arrived to relieve Pamela for the day, and I was glad to see Pamela leave. I think the new caregiver's name was Mary, though I admit to not paying enough attention to that detail.
Mark said that because Dick was so alert, able to sit up in his chair and eat a little bit, they were going to discontinue the round-the-clock watch as of 8 p.m. Thursday evening, after Mary's shift ended. I hoped that would be okay, but after dealing with the stress of Pamela, I was okay with it. I liked Mary a lot and was happy she would be there. I left for work, tired but feeling like maybe this would be okay today. I met my co-worker at a nearby restaurant to catch up on what had happened since I'd left two weeks earlier on vacation. While we talked, I had a call from the hospice chaplain saying that Mark had reached him and asked him to administer last rites for Dick. I confirmed I'd requested that the day before -- Dick's Catholic and I'm not -- and he said he'd be at Dick's place in about half an hour. I hurried through the meeting and got back to Dick's room about 1 p.m.
Dick was sitting in his bed, with a food tray in front of him. I told him that the chaplain was coming soon, but Mary walked in just then and said he'd already been there and left. Dang it. I had wanted to be able to talk to him. Oh, well. I helped Dick eat some mashed potatoes, but he didn't want much of those and pointed to the Boston cream pie on his tray. He ate every bite of that! He could clearly still relate to his surroundings, understand what is happening and say what he wants, even if it's only with pointing and nodding. He doesn't seem upset about anything other than not being able to get up to go to the bathroom. Mary said she had gotten him into his wheelchair and pushed him several times around the hallways to give him some "exercise." Since the latest fall, he can no longer use his feet to move the chair himself but he doesn't mind being pushed now.
Feeling he was in good hands, I left, unbelievably tired, went home and slept for 3 hours and then had some dinner with Kevin at home. I so wanted to go back to sleep but knew I wouldn't be able to sleep, knowing he was there alone and wanting to be there when Mary left so I could make sure he was okay. I arrived at 8:03 p.m. but Mary was already gone. I had missed her and would have no way to know how his afternoon and early evening had gone.
He was quiet, clean, and in his bed. He seemed comfortable, but his mouth just stunk. He is always so fastidious about his mouth. That morning, I couldn't find his toothbrush in his old room and had asked an aide about it. Because he was in a different segment of the floor in this new room -- where they had decided to leave him and not move him back, thank goodness -- nobody seemed to know where his things were or who was in charge of helping him. The aide had promised to find a toothbrush and help him brush his teeth. But it hadn't been done. I went to the station desk to talk to the nurse in charge for the evening. It took me a while to find someone and when I finally did, I just told them I needed to make sure that they were watching out for Dick, since I'd been there for an hour and hadn't seen a soul. They told me hospice was in charge of him.
Tears came to my eyes. Apparently, Mary didn't check out with them when she left at (or before) 8. They hadn't been told that the 24-hour watch was over and they were supposed to be watching over him. They didn't know he was now using briefs and needed to be changed. They did find a toothbrush and handed it to me, but I told them he didn't have any toothpaste, that it wasn't in his old room any more. They promised to look for some, but never did. I asked whether they'd been putting the neosporin on his head wound as ordered, but I don't think I ever got an answer for that one, other than that hospice was in charge of everything now. I emphasized again that hospice wasn't there and that they needed to be taking care of him. I asked them to send an aide to change his briefs. They seemed shocked that he needed this. The nurse in charge seemed shocked that he needed so much help and said he was fine the last time she saw him over the weekend. Apparently, she hadn't known about the latest fall. By now I was trying desperately not to sob, knowing I was going to have to leave him for the night in the hands of people who didn't have a clue who he was or what was happening with him.
I called Kevin and he brought some toothpaste over and I brushed Dick's teeth for him. He was able to spit when I told him and not swallow the toothpaste, so it is clear he can still understand directions and follow them, when they're simple. After an hour, an aide showed up to change his brief. She was nice and did a good job with him. I asked her how often she'd be checking on him overnight. She said every 2 hours and that was reassuring.
Knowing he'd probably sleep all night, Kevin and I reluctantly left him. Outside, Kevin told him that he had told Dick he loved him and he was sure Dick had said, "I know." Once home, Kevin told me that he was regretting all the times over the past several years that he had told Dick he would stop by to see him and hadn't done it. I told him that we all always have regrets and guilt about what we could have done or should have done, when someone dies, but that he had done all he could and was not to blame. I told him that Dick understood and never blamed him. I also told him that's one reason I had suggested he start counseling -- Kevin has an appointment with someone next Monday -- because he is going to have lots of thoughts that he needs to work out with someone as he comes to grips with losing his father. I told him I'm going to find a counselor again now too.
It is now 6:30 Friday morning and I am getting ready to go back, hoping against hope that all is okay. I'm going to try to hang out there until Mark, the hospice nurse, shows up to see Dick again this morning.
I finally got myself out of bed Thursday morning and got to the nursing home, knowing there would be a shift change of the round-the-clock staff from hospice and wanting to be there to greet the person who would stay with him for the day so that I could go back to work. Could not figure out how I could possibly manage to think at work, but I just used up all of my vacation time and don't have a lot of sick time accumulated yet. Still, I needed to see Dick and meet the new caregiver for the day shift. Our regular hospice nurse, Mark, who has visited Dick every week for months now, had explained that there would be a nurse with him during the night and a certified nursing aide with him during the daytime hours.
When I got there, Pamela, who had seemed such a nightmare the night before, actually seemed to have everything relatively under control. She told me she had changed his briefs twice during the night and that otherwise, he had slept pretty well. It was almost time for breakfast so she went to look for an aide who could lift him into his chair to go to the dining room.
Dick could only nod yes or no to my questions, but it was clear that he understood the questions and knew what he wanted to say, just couldn't get the words out. I took the opportunity, with her out of the room and his new roommate apparently already at breakfast, to tell Dick what I'd realized the night before I needed to tell him: "You have been a wonderful husband. I know you love me, even if you haven't been able to tell me that lately. I love you too and I have never loved anyone else and I am going to miss you so much. Kevin loves you, too, and you have been the world's best father to him. He's grown into a fine young man and you should be proud that you've helped to make him that way. I know you told someone yesterday that you want to die. I don't blame you for that. The doctors tell me you're not going to get better. There's nothing they can do. So when you are ready to go, whether it's now or a year from now, I will understand. I'm going to be here to take care of you as long as you need me. I love you." Dick listened carefully. He can no longer really see but he he can hear. He just nodded his head. He didn't seem to emotionally react, but I know he heard me and understood me. He was pointing to his face, so I went to his old room and got his shaver to help him shave.
At that time, Pamela, the nurse, came back in with an aide, and we got Dick into his wheelchair and to the dining room. I sat down to feed him and Pamela sat to one side, acting like I was in her way. He was able to eat a little bit of oatmeal, half a slice of bread, and a little bit of milk. When we took him back to his room, Mark -- his regular hospice nurse -- was there to check on him. I really like Mark a lot. He is caring and warm and competent. He touches Dick when he talks to him and he speaks directly to him with respect. I was relieved to see him. About that time, the new daytime caregiver also arrived to relieve Pamela for the day, and I was glad to see Pamela leave. I think the new caregiver's name was Mary, though I admit to not paying enough attention to that detail.
Mark said that because Dick was so alert, able to sit up in his chair and eat a little bit, they were going to discontinue the round-the-clock watch as of 8 p.m. Thursday evening, after Mary's shift ended. I hoped that would be okay, but after dealing with the stress of Pamela, I was okay with it. I liked Mary a lot and was happy she would be there. I left for work, tired but feeling like maybe this would be okay today. I met my co-worker at a nearby restaurant to catch up on what had happened since I'd left two weeks earlier on vacation. While we talked, I had a call from the hospice chaplain saying that Mark had reached him and asked him to administer last rites for Dick. I confirmed I'd requested that the day before -- Dick's Catholic and I'm not -- and he said he'd be at Dick's place in about half an hour. I hurried through the meeting and got back to Dick's room about 1 p.m.
Dick was sitting in his bed, with a food tray in front of him. I told him that the chaplain was coming soon, but Mary walked in just then and said he'd already been there and left. Dang it. I had wanted to be able to talk to him. Oh, well. I helped Dick eat some mashed potatoes, but he didn't want much of those and pointed to the Boston cream pie on his tray. He ate every bite of that! He could clearly still relate to his surroundings, understand what is happening and say what he wants, even if it's only with pointing and nodding. He doesn't seem upset about anything other than not being able to get up to go to the bathroom. Mary said she had gotten him into his wheelchair and pushed him several times around the hallways to give him some "exercise." Since the latest fall, he can no longer use his feet to move the chair himself but he doesn't mind being pushed now.
Feeling he was in good hands, I left, unbelievably tired, went home and slept for 3 hours and then had some dinner with Kevin at home. I so wanted to go back to sleep but knew I wouldn't be able to sleep, knowing he was there alone and wanting to be there when Mary left so I could make sure he was okay. I arrived at 8:03 p.m. but Mary was already gone. I had missed her and would have no way to know how his afternoon and early evening had gone.
He was quiet, clean, and in his bed. He seemed comfortable, but his mouth just stunk. He is always so fastidious about his mouth. That morning, I couldn't find his toothbrush in his old room and had asked an aide about it. Because he was in a different segment of the floor in this new room -- where they had decided to leave him and not move him back, thank goodness -- nobody seemed to know where his things were or who was in charge of helping him. The aide had promised to find a toothbrush and help him brush his teeth. But it hadn't been done. I went to the station desk to talk to the nurse in charge for the evening. It took me a while to find someone and when I finally did, I just told them I needed to make sure that they were watching out for Dick, since I'd been there for an hour and hadn't seen a soul. They told me hospice was in charge of him.
Tears came to my eyes. Apparently, Mary didn't check out with them when she left at (or before) 8. They hadn't been told that the 24-hour watch was over and they were supposed to be watching over him. They didn't know he was now using briefs and needed to be changed. They did find a toothbrush and handed it to me, but I told them he didn't have any toothpaste, that it wasn't in his old room any more. They promised to look for some, but never did. I asked whether they'd been putting the neosporin on his head wound as ordered, but I don't think I ever got an answer for that one, other than that hospice was in charge of everything now. I emphasized again that hospice wasn't there and that they needed to be taking care of him. I asked them to send an aide to change his briefs. They seemed shocked that he needed this. The nurse in charge seemed shocked that he needed so much help and said he was fine the last time she saw him over the weekend. Apparently, she hadn't known about the latest fall. By now I was trying desperately not to sob, knowing I was going to have to leave him for the night in the hands of people who didn't have a clue who he was or what was happening with him.
I called Kevin and he brought some toothpaste over and I brushed Dick's teeth for him. He was able to spit when I told him and not swallow the toothpaste, so it is clear he can still understand directions and follow them, when they're simple. After an hour, an aide showed up to change his brief. She was nice and did a good job with him. I asked her how often she'd be checking on him overnight. She said every 2 hours and that was reassuring.
Knowing he'd probably sleep all night, Kevin and I reluctantly left him. Outside, Kevin told him that he had told Dick he loved him and he was sure Dick had said, "I know." Once home, Kevin told me that he was regretting all the times over the past several years that he had told Dick he would stop by to see him and hadn't done it. I told him that we all always have regrets and guilt about what we could have done or should have done, when someone dies, but that he had done all he could and was not to blame. I told him that Dick understood and never blamed him. I also told him that's one reason I had suggested he start counseling -- Kevin has an appointment with someone next Monday -- because he is going to have lots of thoughts that he needs to work out with someone as he comes to grips with losing his father. I told him I'm going to find a counselor again now too.
It is now 6:30 Friday morning and I am getting ready to go back, hoping against hope that all is okay. I'm going to try to hang out there until Mark, the hospice nurse, shows up to see Dick again this morning.
June 10 -- Falling over another cliff
The last 36 hours are a blur. Wednesday evening, I went back over to stay with Dick until the hospice nurse was to show up at 8 p.m. to begin the round-the-clock sitting with him. As Snoopy always like to say, "It was a dark and stormy night." Outside his window, we were having 60 mph winds, lightning, thunder, and tons of rain -- a real Texas-style thunderstorm. It was fitting.
When I got there, he was in his wheelchair in the dining room. Kevin was with him, feeding him with a spoon. I took over and let Kevin go home. I found that Dick could use his left hand to put his milk to his mouth but not his right. With his right hand, he seems to move in very slow motion and sometimes it seems that someone has pushed the "pause" button. He also misses his mouth entirely when he uses the right hand, but with the left, it's just fine. He wouldn't try any solid food, but he would eat the ambrosia (strawberries and bananas in a sweet yogurt sauce) if I fed him with a spoon. This is all new since the fall the night before. The night before, Dena had brought him a Subway sandwich for dinner that he ate by himself.
After dinner, he wet himself and the bed too and then motioned that he wanted to go to the bathroom. He was desperate to go to the bathroom, not realizing he had already done it in the bed. I got one of the aides to come in, and she was able to explain to him that we needed to put on a "brief," or diaper to keep him dry. He let them do it, but he wasn't happy about it. He finally stopped fighting after we put on a pair of his underwear over the brief. It was necessary, as it had become clear he can no longer control or even be aware of it. He is desperate, however, to go to the bathroom, obsessed with it. It was the only thing I could understand out of his mouth that evening -- "Go to the bathroom" over and over and over. Nobody else would probably even understand him, but I did. I kept telling him he couldn't go right now, because of the lightning storm, and we would see about it later.
About 7:30, I stood up to go into the hallway for a few minutes to have a break. As I did, I stepped into water about one inch deep and creeping towards his bed. Great. Somehow, the water from outside was coming in through the wall. I went to get help, and when I got back to his room, the overnight nurse sent by hospice to sit with him was walking through the water to reach him, complaining noisily the whole way.
While she was filling out paperwork in an adjoining room, the aides moved Dick to another room. I was thrilled. The new room was much cleaner, smelled much better, and didn't have a noisy roommate. I was also relieved that someone was going to stay with him all night. But as we moved him to the new room, this new nurse -- Pamela, I later learned -- was annoying me to death. First of all, she walked right in and started bossing me and everyone else around without even asking me anything or trying to get to know him. She didn't introduce herself to either of us until I put up my hand and asked her for her name. When she walked into his new room, she said loudly -- right next to him -- that she had "expected someone who was barely conscious." She seemed so disappointed that she was actually going to have to do some work during the night, changing him, and that he kept shaking the bed rails and pointing to the bathroom door! When she made the comment about expecting him to be unconscious, I pulled on her arm and took her into the hallway. I told her -- again -- that he could hear just fine and that what she had just said was rude and upsetting to him and to me. She glanced back into the room and said, "Well, if he doesn't stop that, I'll just give him some Lorazepam." I asked how she was planning to do that, when he doesn't want any medications at all and refuses them. She said she'd just give him a suppository if he wouldn't take it in his mouth. I said, "Good luck with that," because there is no way to do that without really irritating him. She continued to speak by shouting into his ear. I told her three times, before she finally stopped, that he could hear just fine and that she was disturbing him and the other patients. Finally, she lowered her tone. Meanwhile, Dick is used to going to bed at 7, and this was now 9 pm and he was so tired from spending the night before in the ER. I was tired for the same reason, on top of jetlag. With great reluctance, I left him with her for the night, knowing I couldn't stay because I was on the brink of collapse.
When I got there, he was in his wheelchair in the dining room. Kevin was with him, feeding him with a spoon. I took over and let Kevin go home. I found that Dick could use his left hand to put his milk to his mouth but not his right. With his right hand, he seems to move in very slow motion and sometimes it seems that someone has pushed the "pause" button. He also misses his mouth entirely when he uses the right hand, but with the left, it's just fine. He wouldn't try any solid food, but he would eat the ambrosia (strawberries and bananas in a sweet yogurt sauce) if I fed him with a spoon. This is all new since the fall the night before. The night before, Dena had brought him a Subway sandwich for dinner that he ate by himself.
After dinner, he wet himself and the bed too and then motioned that he wanted to go to the bathroom. He was desperate to go to the bathroom, not realizing he had already done it in the bed. I got one of the aides to come in, and she was able to explain to him that we needed to put on a "brief," or diaper to keep him dry. He let them do it, but he wasn't happy about it. He finally stopped fighting after we put on a pair of his underwear over the brief. It was necessary, as it had become clear he can no longer control or even be aware of it. He is desperate, however, to go to the bathroom, obsessed with it. It was the only thing I could understand out of his mouth that evening -- "Go to the bathroom" over and over and over. Nobody else would probably even understand him, but I did. I kept telling him he couldn't go right now, because of the lightning storm, and we would see about it later.
About 7:30, I stood up to go into the hallway for a few minutes to have a break. As I did, I stepped into water about one inch deep and creeping towards his bed. Great. Somehow, the water from outside was coming in through the wall. I went to get help, and when I got back to his room, the overnight nurse sent by hospice to sit with him was walking through the water to reach him, complaining noisily the whole way.
While she was filling out paperwork in an adjoining room, the aides moved Dick to another room. I was thrilled. The new room was much cleaner, smelled much better, and didn't have a noisy roommate. I was also relieved that someone was going to stay with him all night. But as we moved him to the new room, this new nurse -- Pamela, I later learned -- was annoying me to death. First of all, she walked right in and started bossing me and everyone else around without even asking me anything or trying to get to know him. She didn't introduce herself to either of us until I put up my hand and asked her for her name. When she walked into his new room, she said loudly -- right next to him -- that she had "expected someone who was barely conscious." She seemed so disappointed that she was actually going to have to do some work during the night, changing him, and that he kept shaking the bed rails and pointing to the bathroom door! When she made the comment about expecting him to be unconscious, I pulled on her arm and took her into the hallway. I told her -- again -- that he could hear just fine and that what she had just said was rude and upsetting to him and to me. She glanced back into the room and said, "Well, if he doesn't stop that, I'll just give him some Lorazepam." I asked how she was planning to do that, when he doesn't want any medications at all and refuses them. She said she'd just give him a suppository if he wouldn't take it in his mouth. I said, "Good luck with that," because there is no way to do that without really irritating him. She continued to speak by shouting into his ear. I told her three times, before she finally stopped, that he could hear just fine and that she was disturbing him and the other patients. Finally, she lowered her tone. Meanwhile, Dick is used to going to bed at 7, and this was now 9 pm and he was so tired from spending the night before in the ER. I was tired for the same reason, on top of jetlag. With great reluctance, I left him with her for the night, knowing I couldn't stay because I was on the brink of collapse.
Monday, March 23, 2009
December 2003 -- Telling Kevin
Kevin was 12 when I knew for sure there was something wrong with my husband, Dick, and 13 when Dick was diagnosed with frontotemporal dementia. Even before the day I knew, Kevin knew and had been trying to tell me there was something wrong with his dad. Kevin and Dick were so close, probably closer than most kids are to their dads.
Dick was 46 when we married and 50 when Kevin was born. We both adored this child, and he was the center of our world. Dick was thrilled to have a little buddy. At his age, he had given up on ever marrying or having children, and then here we were in his life. He had the normal new father jitters, wondering how a child was going to change his golfing habits and how it was going to change his relationship with me. But those jitters were quickly set aside as he enjoyed this little boy completely.
Dick hadn't really worked since we married. I always puzzled over this and now I wonder if it was the early signs of the FTD at work. Fortunately, I had a great job and made lots of money so we didn't really need the money. After Kevin arrived, Dick's indifference to finding a job proved a blessing because he spent so much time with Kevin. Although I hired a full-time housekeeper/nanny to be with Kevin during the day while I was at work, Dick was around all the time too. After Kevin started school and we moved to another state, Dick was in charge of Kevin full-time. He was the one who insisted on Kevin's attending the private school, who took Kevin to school and picked him up, who established the relationships with Kevin's teachers, who took him to all his sports events, and who took him golfing with him starting at about age 2. He loved that boy and they were together all the time.
It had started to change, though, in the past couple years before diagnosis (my life is split now into pre-diagnosis and post-). Dick had acquired some odd habits and one of them was that he constantly nagged Kevin. I figured it was because Kevin was approaching teenage years and he was just being as annoying as I was at that age. Dick and Kevin were together in the afternoons before I came home from work. I owned my own business and sometimes worked long hours. Looking back, I think I was spending more time at work to avoid Dick, too, as he got stranger during those last couple years. Anyway, it meant that things were happening that Kevin noticed long before I did.
Three months before diagnosis, I moved Kevin and me to an apartment and hid from Dick. I'll write another blog one day about the day we moved out, as that's a good story itself. I had worried about the effect on Kevin of our moving out of our big 4500 square foot house in the woods into a little two-bedroom apartment, leaving behind all of our things and our dogs, not to mention his adored father. But Kevin was thrilled about the move. That night, he had jumped on the new rented sofa with joy and he had slept as though he had not slept for months before that. He was a new kid and much happier than he had been at home. That's when I'd known I was doing the right thing. For six weeks after we moved out, Dick never once asked about Kevin although I talked to Dick nearly every day. One weekend, Kevin asked to go spend a weekend at home (I still thought we were dealing with a marital problem so I had told him he could see his Dad whenever he wanted). I arranged it with Dick and dropped Kevin back at home with his suitcase. He called me three hours later and begged me to pick him up, which I immediately did. Dick didn't seem to care. Very weird.
Meanwhile, about a month before diagnosis, Kevin was diagnosed with a heart condition that was going to require a procedure to be done in a children's hospital, with an overnight stay. I told Dick, assuming he would be as devastated as I was, but of course he wasn't. The procedure -- a radiofrequency catheter ablation -- is completely successful 98% of the time. The week after Dr. Weiner first whispered the words "frontotemporal dementia" and the week before the final diagnosis, Kevin had the procedure. Dick showed up at the hospital 5 minutes before Kevin had to go into the operating room but then he disappeared again. I sat at the hospital for the entire 6 hours Kevin was in the cath lab, with my parents and some friends, waiting for the word that it was done and he was now okay. Instead, when he came out, they told me he was in the 2% for which it hadn't worked. I have never felt so alone, not having my husband there to hear that news with me. Where was that shoulder I needed to cry on right then? He never even called to find out if Kevin survived the procedure. That night, Kevin had a rough night and I slept right next to him in the hospital room.
So, with that behind us, Kevin recovering from his unsuccessful operation and me still in a dizzying whirlwind of emotion, I took Dick back to see Dr. Weiner. Dr. Weiner showed me the scans of Dick's brain and said he definitely had FTD. "No cure, no treatment." I asked whether I should move back in with Dick. No, he said, absolutely not. It wouldn't be safe for Kevin and we would probably call Child Protective Services if you do. My world completely crashed at that point.
That evening, I sat down with Kevin and told him the new words -- frontotemporal dementia. I told him his Dad wasn't going to get better. Kevin's first reaction mirrored mine: relief. We weren't crazy. There really was something wrong with him. And then: horror. But then Kevin immediately jumped to one that is his alone, really. He asked me, "Is it genetic?" How did he even know that word? And I had to tell him they don't really know, but I told a white lie, "We don't think so, in your Dad's case."
For three hours, Kevin lay on his bed and sobbed that night.
It was December 23, 2003, and the next day would be Christmas Eve and we somehow got through it. I also used Christmas Eve to arrange a vacation for Kevin and me. I was so exhausted that I didn't know how I would manage to even prepare meals for us. I took us on a cruise in the Caribbean --it was perfect. Kevin and I slept a lot. I let him order room service as much as he wanted, and he took complete advantage of that. I spent hours on deck just looking at the ocean and more hours in the library putting together a jigsaw puzzle with complete strangers. We read a book together to each other in the evenings about a man who had a traumatic brain injury that destroyed his frontal lobe. And we cried. A lot. For a whole week. And then I felt ready to go on.
Dick was 46 when we married and 50 when Kevin was born. We both adored this child, and he was the center of our world. Dick was thrilled to have a little buddy. At his age, he had given up on ever marrying or having children, and then here we were in his life. He had the normal new father jitters, wondering how a child was going to change his golfing habits and how it was going to change his relationship with me. But those jitters were quickly set aside as he enjoyed this little boy completely.
Dick hadn't really worked since we married. I always puzzled over this and now I wonder if it was the early signs of the FTD at work. Fortunately, I had a great job and made lots of money so we didn't really need the money. After Kevin arrived, Dick's indifference to finding a job proved a blessing because he spent so much time with Kevin. Although I hired a full-time housekeeper/nanny to be with Kevin during the day while I was at work, Dick was around all the time too. After Kevin started school and we moved to another state, Dick was in charge of Kevin full-time. He was the one who insisted on Kevin's attending the private school, who took Kevin to school and picked him up, who established the relationships with Kevin's teachers, who took him to all his sports events, and who took him golfing with him starting at about age 2. He loved that boy and they were together all the time.
It had started to change, though, in the past couple years before diagnosis (my life is split now into pre-diagnosis and post-). Dick had acquired some odd habits and one of them was that he constantly nagged Kevin. I figured it was because Kevin was approaching teenage years and he was just being as annoying as I was at that age. Dick and Kevin were together in the afternoons before I came home from work. I owned my own business and sometimes worked long hours. Looking back, I think I was spending more time at work to avoid Dick, too, as he got stranger during those last couple years. Anyway, it meant that things were happening that Kevin noticed long before I did.
Three months before diagnosis, I moved Kevin and me to an apartment and hid from Dick. I'll write another blog one day about the day we moved out, as that's a good story itself. I had worried about the effect on Kevin of our moving out of our big 4500 square foot house in the woods into a little two-bedroom apartment, leaving behind all of our things and our dogs, not to mention his adored father. But Kevin was thrilled about the move. That night, he had jumped on the new rented sofa with joy and he had slept as though he had not slept for months before that. He was a new kid and much happier than he had been at home. That's when I'd known I was doing the right thing. For six weeks after we moved out, Dick never once asked about Kevin although I talked to Dick nearly every day. One weekend, Kevin asked to go spend a weekend at home (I still thought we were dealing with a marital problem so I had told him he could see his Dad whenever he wanted). I arranged it with Dick and dropped Kevin back at home with his suitcase. He called me three hours later and begged me to pick him up, which I immediately did. Dick didn't seem to care. Very weird.
Meanwhile, about a month before diagnosis, Kevin was diagnosed with a heart condition that was going to require a procedure to be done in a children's hospital, with an overnight stay. I told Dick, assuming he would be as devastated as I was, but of course he wasn't. The procedure -- a radiofrequency catheter ablation -- is completely successful 98% of the time. The week after Dr. Weiner first whispered the words "frontotemporal dementia" and the week before the final diagnosis, Kevin had the procedure. Dick showed up at the hospital 5 minutes before Kevin had to go into the operating room but then he disappeared again. I sat at the hospital for the entire 6 hours Kevin was in the cath lab, with my parents and some friends, waiting for the word that it was done and he was now okay. Instead, when he came out, they told me he was in the 2% for which it hadn't worked. I have never felt so alone, not having my husband there to hear that news with me. Where was that shoulder I needed to cry on right then? He never even called to find out if Kevin survived the procedure. That night, Kevin had a rough night and I slept right next to him in the hospital room.
So, with that behind us, Kevin recovering from his unsuccessful operation and me still in a dizzying whirlwind of emotion, I took Dick back to see Dr. Weiner. Dr. Weiner showed me the scans of Dick's brain and said he definitely had FTD. "No cure, no treatment." I asked whether I should move back in with Dick. No, he said, absolutely not. It wouldn't be safe for Kevin and we would probably call Child Protective Services if you do. My world completely crashed at that point.
That evening, I sat down with Kevin and told him the new words -- frontotemporal dementia. I told him his Dad wasn't going to get better. Kevin's first reaction mirrored mine: relief. We weren't crazy. There really was something wrong with him. And then: horror. But then Kevin immediately jumped to one that is his alone, really. He asked me, "Is it genetic?" How did he even know that word? And I had to tell him they don't really know, but I told a white lie, "We don't think so, in your Dad's case."
For three hours, Kevin lay on his bed and sobbed that night.
It was December 23, 2003, and the next day would be Christmas Eve and we somehow got through it. I also used Christmas Eve to arrange a vacation for Kevin and me. I was so exhausted that I didn't know how I would manage to even prepare meals for us. I took us on a cruise in the Caribbean --it was perfect. Kevin and I slept a lot. I let him order room service as much as he wanted, and he took complete advantage of that. I spent hours on deck just looking at the ocean and more hours in the library putting together a jigsaw puzzle with complete strangers. We read a book together to each other in the evenings about a man who had a traumatic brain injury that destroyed his frontal lobe. And we cried. A lot. For a whole week. And then I felt ready to go on.
Thursday, March 12, 2009
December 2003 -- A Name for What's Wrong
It is another one of those days burned into my memory. December 6, 2003. A week or so before that, I had tearfully begged the woman at the Memory Disorders Clinic at UT Southwestern to please get us an appointment with the director of the clinic as soon as possible because something was really, really wrong with my husband. She had found a time slot for us, months earlier than she normally would have gotten us in to see the doctor. That was good, because I didn't think I could stand going through Christmas without learning something new. I was completely stressed out. Our son Kevin, who was then 13, was scheduled for a heart operation at the children's hospital on December 16 and that alone was almost more than a parent should have to deal with. My husband's strange behaviors were pushing me past my limits.
When it was our turn at the clinic, a nurse took Dick one direction to take his weight and other normal vital signs, while Dr. Weiner whisked me into his office and asked a few simple questions. When Dick arrived, Dr. Weiner sat facing Dick in a chair and placed me behind Dick where Dick couldn't watch me but Dr. Weiner could see my facial reactions. He asked Dick a series of questions. Of course, Dick's memory was just fine and he knew what time it was, what year, where he was, the normal questions that test your memory. Then Dr. Weiner told Dick he was going to give him 60 seconds to name all the animals he could think of. Dick said, "Dogs.....cats...... dogs, did I say dogs already? Oh, yeah, cats..... and birds! Dogs. And cats..." He spent the entire 60 seconds that way, coming up with nothing else. Of course, in my own head, I was going through the entire zoo, then a farm, then all the different kinds of dogs and birds I could think of. Next, Dr. Weiner asked Dick to name all the words he could think of that started with a letter. Again, Dick could come up with only 3. I was startled. My husband had a master's degree and was well-spoken. Why couldn't he think of all those words?
Then the part that I will never forget. Dr. Weiner asked, "What does it mean when I say don't cry over spilled milk?" Dick just looked puzzled and said he didn't know. Dr. Weiner asked if he'd ever heard that expression before, and Dick just shook his head no. Dr. Weiner prompted him, asking what he thought it might mean. Dick said he had no idea but asked, "If I spill my milk, I shouldn't cry?" Dr. Weiner gave a friendly smile and said, "How about more generally? What do you think it might mean?" Dick said, "If someone else spills their milk, I shouldn't cry?" Behind him, my head was spinning with the realization that was sinking in. Dr. Weiner said, "Okay, let's try another one. What does it mean when I say people who live in glass houses shouldn't throw stones?" Dick looked at him like he was stupid and matter-of-factly said, "I don't live in a glass house." Bells went off in my head. No wonder he and I didn't seem to be able to talk to each other any more -- he didn't understand normal speech any more. Dr. Weiner looked at me and said, "Your husband doesn't understand abstract concepts at all. Is this a change?" Absolutely.
There were other things during the two hours we were there, things that I heard Dick tell the doctor that I had gotten used to hearing from him. I had known they were strange but I wouldn't have remembered to write them all down before coming. The doctor asked Dick, for example, if he wanted me and Kevin to live with him again, and Dick said, "No, she's too fat now." The doctor then asked him what he would do if he didn't live with me, where he would live, and how he would pay his bills. He said he'd get an apartment and he'd be able to pay his bills by going to the ATM just like he always did (somehow, it never occurred to him that I had to work to earn the money that went into the ATM!).
At the end of the exam, Dr. Weiner told us that there was definitely something not right and he did not suspect Alzheimer's but he needed to get a scan of Dick's brain to look for what parts were not working properly. He wanted to schedule him for a SPECT scan, a single photon emission CT scan, which was considered experimental at that time. He said we could do it at no charge as part of their research program, and he scheduled it for December 12, the following week. We also scheduled a visit back with Dr. Weiner on December 23 to learn the results of the scan.
Dick and I sat again in the waiting room for a few minutes while the appointments were being scheduled. Then Dick left to go to the restroom. Dr. Weiner passed through the waiting room just then and put his hand on my shoulder. He whispered, "I know this is terrible for you and your son. I think he has frontotemporal dementia." Just then Dick came back and Dr. Weiner left.
Frontotemporal dementia??? What the heck is that???? Thoughts were piling up in my head. I wanted to ask a million questions, but I knew I had to remain calm or Dick would get upset, and he was dangerous when he was upset. So I put on a smile, acted like the world hadn't just shifted, and took him out to eat on our way home.
When it was our turn at the clinic, a nurse took Dick one direction to take his weight and other normal vital signs, while Dr. Weiner whisked me into his office and asked a few simple questions. When Dick arrived, Dr. Weiner sat facing Dick in a chair and placed me behind Dick where Dick couldn't watch me but Dr. Weiner could see my facial reactions. He asked Dick a series of questions. Of course, Dick's memory was just fine and he knew what time it was, what year, where he was, the normal questions that test your memory. Then Dr. Weiner told Dick he was going to give him 60 seconds to name all the animals he could think of. Dick said, "Dogs.....cats...... dogs, did I say dogs already? Oh, yeah, cats..... and birds! Dogs. And cats..." He spent the entire 60 seconds that way, coming up with nothing else. Of course, in my own head, I was going through the entire zoo, then a farm, then all the different kinds of dogs and birds I could think of. Next, Dr. Weiner asked Dick to name all the words he could think of that started with a letter. Again, Dick could come up with only 3. I was startled. My husband had a master's degree and was well-spoken. Why couldn't he think of all those words?
Then the part that I will never forget. Dr. Weiner asked, "What does it mean when I say don't cry over spilled milk?" Dick just looked puzzled and said he didn't know. Dr. Weiner asked if he'd ever heard that expression before, and Dick just shook his head no. Dr. Weiner prompted him, asking what he thought it might mean. Dick said he had no idea but asked, "If I spill my milk, I shouldn't cry?" Dr. Weiner gave a friendly smile and said, "How about more generally? What do you think it might mean?" Dick said, "If someone else spills their milk, I shouldn't cry?" Behind him, my head was spinning with the realization that was sinking in. Dr. Weiner said, "Okay, let's try another one. What does it mean when I say people who live in glass houses shouldn't throw stones?" Dick looked at him like he was stupid and matter-of-factly said, "I don't live in a glass house." Bells went off in my head. No wonder he and I didn't seem to be able to talk to each other any more -- he didn't understand normal speech any more. Dr. Weiner looked at me and said, "Your husband doesn't understand abstract concepts at all. Is this a change?" Absolutely.
There were other things during the two hours we were there, things that I heard Dick tell the doctor that I had gotten used to hearing from him. I had known they were strange but I wouldn't have remembered to write them all down before coming. The doctor asked Dick, for example, if he wanted me and Kevin to live with him again, and Dick said, "No, she's too fat now." The doctor then asked him what he would do if he didn't live with me, where he would live, and how he would pay his bills. He said he'd get an apartment and he'd be able to pay his bills by going to the ATM just like he always did (somehow, it never occurred to him that I had to work to earn the money that went into the ATM!).
At the end of the exam, Dr. Weiner told us that there was definitely something not right and he did not suspect Alzheimer's but he needed to get a scan of Dick's brain to look for what parts were not working properly. He wanted to schedule him for a SPECT scan, a single photon emission CT scan, which was considered experimental at that time. He said we could do it at no charge as part of their research program, and he scheduled it for December 12, the following week. We also scheduled a visit back with Dr. Weiner on December 23 to learn the results of the scan.
Dick and I sat again in the waiting room for a few minutes while the appointments were being scheduled. Then Dick left to go to the restroom. Dr. Weiner passed through the waiting room just then and put his hand on my shoulder. He whispered, "I know this is terrible for you and your son. I think he has frontotemporal dementia." Just then Dick came back and Dr. Weiner left.
Frontotemporal dementia??? What the heck is that???? Thoughts were piling up in my head. I wanted to ask a million questions, but I knew I had to remain calm or Dick would get upset, and he was dangerous when he was upset. So I put on a smile, acted like the world hadn't just shifted, and took him out to eat on our way home.
Wednesday, February 25, 2009
February 2009 - The Worst Fall Yet
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?
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?
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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