Dick took his last breath on November 28, 2010. He weighed less than 100 pounds at the end, which was next to nothing for a 6' man who had weighed 210 pounds when he was diagnosed nearly 7 years earlier. It had been a long, slow march to this moment.
Although I had known for seven years that this day would come, still I was not really ready. I felt like I'd been caught off-guard when the hospice nurse told me a couple weeks earlier that it really looked like the end this time. Kevin and I spent those last two weeks talking to him, telling him that we would be okay, that we would take care of each other, and that he could go when he felt ready. That last weekend, we barely left his side. I brought my newspaper and sat on the bed next to his. I played music for him, some of my most favorite, soothing songs, especially "Never Alone." That song just spoke to me and I think it did for him too. I would put my phone next to his ear and put on the song for him to hear. I wanted him to know that he would never be alone, that no matter where he was about to go, I would always be there, but also I was reassuring myself that his leaving was not really leaving me alone.
That evening, about 6, I leaned over and whispered to him that I was going to go home to make dinner for Kevin and me. I told him that, if he was ready to go, he did not need to wait for me to come back. And then I realized that he might not understand what we all meant by "ready to go." Because he had long ago lost the ability to understand abstract concepts, he might think we were all crazy thinking he was going to go anywhere, since his legs hadn't worked for at least 18 months! So I said to him, "When you are ready to join your parents and Aunt Dot in heaven, just hold your breath for a second and you will find you are there with them. It won't hurt and you will be okay. You can go there and you can wait for me to join you someday. We love you now and forever."
Ten minutes later, as I walked into my house to fix dinner, I got a call from the hospice nurse that I should come back to the nursing home, that he was gone.
Thursday, August 18, 2011
Wednesday, July 1, 2009
July 2009 - Making the most of the words that remain
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.
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.
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.
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