Thursday evening the 23rd, before retiring for the night, I told Dennis, "I'm going to sleep in the bedroom tonight. I have not been sleeping well at all out here in the living room, whether it's in the recliner or scrunched up on the couch, I'm just not sleeping well and I need some good sleep to keep my strength up. I have to be able to function and help you as much as I can. I hope that's okay with you. I'd rather sleep here with you, but the sleep I'm getting is very fleeting. Okay?"
"Sure babe, I understand. I'd like to sleep with you in the bedroom, but that's not possible either. You go ahead."
"If you need anything at all, just holler. I'll keep the bedroom door partly open so I can hear you if you need me."
When I got up the next morning, I was more refreshed than I had been, so I had made the correct decision. I peeked into the living room and his eyes were closed, so I figured I'd let him sleep. I nuked some coffee, grabbed the paper off the front porch, and went into my chair. Just as I sat down, he said, "Good morning."
"Well, hi there. I thought you were still asleep. Can I get you something?"
"Could you make me some tea? And bring me my acidophilus and bifidus too?"
"Coming right up. It's Christmas Eve, I have the day off. I'll do whatever I can for you today."
After making his tea, he wanted to go to the bathroom. "Can you just put the tea in there? I'll drink it in there."
"You got it. Here, let me help you get into the bathroom." I placed his walker in front of his chair and helped him stand. Placing my hands around his waist, I was surprised that my hands seemed to be resting directly on his hip bones. I knew he had lost a lot of weight, but it seemed like I was helping a skeleton into the bathroom. I got him into the bathroom, lowered his sweatpants for him and helped him sit on the toilet. "Just call out when you're ready to get up and I'll be right in."
After surviving his bout of colon cancer back in the 1990s, his bathroom routine in the morning had become quite a chore. With only two-thirds of a colon, it took him a lot longer for his morning bathroom time than the normal person. He would be in the bathroom for one to two hours, so leaving him sitting there was a rather normal routine by this point. I went back to the living room to finish my coffee and read the paper. I thought I heard him call out, so I popped my head around the door and asked, "Did you call for me? Are you ready?"
"No I didn't. I was just talking to my legs. They won't listen to me any more. They don't do what I tell them," he said, on the verge of tears.
I went over to him, put my arms around him and said, "I know dear. I can tell you're very frustrated. I wish there were more I could do for you." It hurt me so much to see him in such mental anguish. There was no pain with ALS, just the frustration of not being able to do normal things anymore.
I helped him get back to his chair, where he remained the rest of the day, only getting up to go to the bathroom (with my help to and from his chair). Around 5pm, I asked him, "What do you want for dinner?"
"I'm not all that hungry tonight. Could you just make some chicken broth soup?"
"Okay. I'll chop up some garlic to put in it as well. You always like it that way."
After finishing our soup, he just wanted to rest. I had noticed that his breathing was becoming very labored, so I asked him, "Do you want me to give you a dose of morphine? I can tell you're having a hard time breathing."
"Not right now. I just want to try to nap for awhile."
So while he napped, I continued watching the college basketball game that was on. Just before seven o'clock, his eyes opened. He looked over at me and said, "I think I'd like my heroin now."
"Do you mean your morphine, dear?" I replied.
"Yeah, yeah, yeah. That's what I mean," he said, smiling at me with that twinkle in his eye (he kept his sense of humor throughout this entire ordeal).
I measured out a dose for him and administered it. "Thanks, babe. I'm just going to try and rest for awhile again. I love you."
"I love you, too, dear. I'm right here if you need anything."
I don't know what made me do it, but I decided to call our friend Carl. Once he answered, I said, "Carl, it's Rick. I have a very bad feeling about Dennis. I really think he's about to pass. If you want to see him one more time, you'd probably better get over here as soon as you can."
"I'll be right over, Rick."
While waiting for Carl to arrive, I decided to make a pot of coffee, so I wouldn't have to do it in the morning. I nuke my coffee every morning anyway, so it was no big deal to do it. I went into the kitchen, put the water on the burner, ground the beans and waited back in the living room. I heard the tea kettle start whistling, so I hurried back to the kitchen for the first pour. When I got back to the living room, Dennis had opened his eyes and appeared to be staring off into the distance, looking at the ceiling. At first I thought he had died and I wasn't there for him, but then I noticed that his chest was still moving, so I knew he was still here. I went back to the kitchen, did the second pour, then back to the living room. He was in the exact same position, his eyes wide open, staring at the ceiling.
I sat down in my chair and said to him, "Are you awake, dear?"
He didn't respond, so I went to him, kissed his forehead and knelt next to him. I grabbed his hand, kissed it, looked into his eyes and said, "I love you, dear."
Seconds later, I heard what was a small gurgle in his throat and then his entire body relaxed. I knew he was gone, but said, "Dennis? Dennis? Are you still here?" I looked at the cable box and noted it was 7:45pm.
There was no response. I shook his shoulder, felt for a pulse in his left wrist. I could feel nothing. I checked his right wrist. Still nothing. I put my head down to his chest. Total silence. I felt his throat, trying to find a pulse. By this point, I was sure he had passed. With tears running down my cheeks, I said, "I know you're gone, dear. You've left this body of yours behind, the one that wouldn't do what you wanted anymore. I'm so glad I was here for you."
I sobbed softly for a couple minutes, proud of the fact that I hadn't gone completely to pieces. I phoned the hospice to let them know he had passed. They said someone would call me back within an hour. I told them I was alone at the time, but that a friend was on his way over.
There was a knock on the door at about 7:55pm. I rushed to the front of the house, the tears starting to flow. I flung open the door, Carl standing there. "He's gone, Carl."
"Noooooooo," he wailed. We grabbed each other in a huge hug as we comforted each other.
"He passed about 10 minutes ago, Carl. You just missed him."
We went back to the living room. Carl went over to Dennis, kissed his forehead and said, "We're all going to miss you, buddy. You were the best."
We sat together on the couch, Carl holding me. Dennis looked so peaceful, sitting there in his recliner. His eyes were still partially open. I got up and went over to him. I managed to get his right eye shut, but his left one would not close entirely. I gave up and went back to the couch.
As I sat back down, Carl said, "It's like he's watching us, about ready to say, 'what are you doing with your arm around my Rick?' "
We laughed. Then my tears started again. The phone rang while we were sitting there. It was the hospice representative, who said she'd be by within the hour.
"I've got to make a couple phone calls, Carl. I should call my sister and Dennis's brother John. He had called us earlier to say he and Mary would be coming into town next Tuesday, stay until the end of the year, and do what they can for us while they're here. I guess they don't have to come now, do they?"
I called my sister, even though it was almost 11:30pm her time. She has caller ID on her phone, so when she picked up, she said, "Well, hi there. Trying to beat the rush on phone calls in the morning?"
"Sorry I'm calling so late, Mary, but I've got bad news. Dennis passed away about 45 minutes ago," I said, the tears coming on strong again.
"Oh my god, Rick. I'm so sorry for you. I wish I could reach through the phone and give you a big hug. Oh, Rick."
Talking through tears, I told her it had been very peaceful, I was holding his hand when he passed, and the last words he heard were "I love you, dear."
"Our friend Carl is here with me now. We're waiting for hospice to show up, then the mortuary people. He's going to stay with me until they take his body away."
"I'm so glad you're not by yourself. I'll go over and tell Mom in the morning. I am so sorry. I wish I could do something. Take care of yourself. We'll talk again tomorrow. Mom, Rich and Jen and the kids are going to be here tomorrow, so call us here."
"Okay, sis. I'll talk to you tomorrow."
I then called John, Dennis's brother, who lives outside Phoenix. He agreed that he'd call Sandie and Eileen in the morning.
A short time later, the hospice representative showed up. We did some paperwork in the dining room, then went to the living room so she could see Dennis. Even though he died at 7:45pm, she can't take my word for it. She declared him dead at 8:50pm and phoned the mortuary so they could pick up the body. As I told her, I had only received the paperwork the day before and had not yet met with them. But because hospice was involved, it was just a formality that could be taken care of the following week. The two men who showed up were very respectful, handled the body carefully, and expressed their condolences. Carl and I watched them all the way down the front steps, and watched them place the body in the van. That was about as final as it could get.
Carl stayed with me for about another half hour, asked me if I'd be okay, then upon reassurance from me that I'd be okay, left. He said he'd be back tomorrow.
It was our 31st Christmas Eve together; we didn't make it to our 31st Christmas together. The loneliness starts.
Sunday, March 27, 2011
Saturday, March 26, 2011
The last ALS Clinic appointment - the end is near
Thursday night between 12:30am-1am, I was in my recliner trying to sleep; Dennis was in his chair. He had been having a very bad breathing day. I gave him some morphine doses to help alleviate the problems. Also gave him some Nyquil as he had a cold. I heard him getting up from his chair, holding on to his walker. Trying to stand, he fell backwards; luckily, he fell right into his chair, avoiding injury. I had lowered the footrest on my chair, ready to help him. After getting back up and starting towards the bathroom, he started falling backwards again. I was able to grab him and kept him from falling all the way to the floor. I helped him into the bathroom and back to his chair once he was done.
Friday, December 17th was the beginning of the end. We found out during the ALS Clinic appointment with the respiratory therapist that his breathing capacity was down to 21% (it had been at 25% the previous visit in November). While his oxygen levels were still over 90 (which is good), it was becoming more and more obvious that his days were numbered. Little did we know that he only had one week left to live.
When we got home from the appointment, there was no one to assist me with getting him into the house, so we took it real slow while he leaned on me getting up the steps. We needed to stop at the landing about halfway up so he could catch his breath. But we did prevail and got him into the house safely. I've mentioned this before, but because he couldn't lie flat on his back, he had been literally living in his recliner, including sleeping. My perception must have been on high, because I decided to sacrifice my own sleep patterns by trying to sleep in the living room with him. I'd start in my own recliner, move to the couch, back to the chair. I was not having all that much luck trying to sleep, but I felt I needed to be in the same room with him as much as possible. I didn't realize it at the time, but my subconscious mind was preparing me for the end. To make matters worse (if that's even possible), our TV died over the weekend. The TV was the only thing that Dennis had to rely on for entertainment, whether it was watching nature shows, the Science Channel, the History Channel, or just listening to the blues on the audio channels, it was all he had. I went through the Sunday supplemental ads from the newspaper, found some pretty good prices on TVs and went to Best Buy to check out their specials. I found what I wanted, and arranged for it to be delivered, installed and the old set taken away on Wednesday. That left Sunday through Tuesday without a TV. I dug out my old portable tape/CD player, and for most of Sunday, we listened to CDs. I contacted our friend, Hugh, who is a high-end audio guy. I told him about the problem with the TV and wanted to know if he could stop by and adjust the cables so we could listen to the audio channels without having to have the TV on. Once he arrived, it took him all of about five seconds to make the switch, and we had sound. Dennis was quite happy that he'd be able to listen to the blues again.
I had been on the phone all weekend long with the hospice, trying to come up with volunteers, or anyone who could show up to stay with Dennis while I went to work. I hated having to go into the office now, even though I was working shorter hours. I just didn't want to leave him alone, I was that worried about him. We were never able to come up with anyone though, so back to work I went on Monday. I'm at most only 15 minutes away (with bad traffic), so I made sure that the phone was right next to his chair in the event he needed me for any reason, he could call.
While he was trying to make himself some lunch on Monday around 12:30, he dropped a spoon on the kitchen floor. In attempting to pick it up, he fell and had to crawl back to the living room and struggle to get into his chair. About 3pm, the doorbell rang. The pharmacy had delivered a prescription for him. After closing the door, he dropped the bottle on the dining room floor and when trying to retrieve it, he fell once again and had to crawl back to the living room, as he could not get himself back up to walk. He stayed there until I got home shortly thereafter, when he told me about his two falling episodes.
We had a very frank discussion about his health. I said, "You know, dear, I really think you're going faster than either one of us realizes at the moment. Neither of us want it to happen, but I'm just afraid the end is near. I'm not going anywhere, I'll be here for you. That's one thing you can definitely count on. I love you so much, and it really pains me to see you suffer so much. I wish there were more I could do."
"I love you too, babe. Thank you so much for everything you do for me."
"While I enjoy the compliments, you don't have to thank me. I do what I can because I love you."
Author note: I need to stop for a while. This is becoming very difficult to write through the tears. I'll come back later.
Tuesday was pretty uneventful, at least until I got home from work that day. Dennis had a difficult night with his breathing. I gave him a couple of doses of morphine during the evening into the night. I was still attempting to sleep in the living room with him, though my sleep was very erratic (not really used to sleeping in a recliner). By Wednesday morning, he had a slight improvement but not enough for me to feel comfortable leaving him home all day by himself, so I called Claire that morning and told her Dennis was in no shape to be by himself and that I wouldn't be in that day. Shortly after 1pm that day, the crew from Best Buy showed up with the new TV, installed it and hauled away the old one. I told Dennis before we turned it on for the first time, "Be prepared to be dazzled. You won't believe the picture as compared to the old set that they just took away."
And dazzled he was! I had to push his chin up because he was staring at the TV with a dropped jaw. I said, "See? I told you."
"Wow. That's all I can say. Wow."
Needless to say, we were both very pleased with the new TV.
Depending on how he was feeling once Thursday morning rolled around would determine if I was going to have to go to work that day or not. He told me he was feeling better than the day before, so because of all the year end things Claire and I do, I decided I'd go in. I made sure and put the phone right next to his chair, in the event he had to reach me. Even then, I didn't really want to go in but I did, though I only stayed until it was time to leave for lunch. I had all the checks written that we were going to do before the Christmas holiday, so I told Claire I was leaving for the day and to enjoy her holiday.
While I was home with Dennis that afternoon, we had been switching between audio channels—the blues channel for him, the classic rock station for me. While I was reading, he was trying to take a nap. At the time, the classic rock station was on. I knew the song as soon as the first couple notes hit—Walking on the Moon by the Police. I looked over at Dennis when it was starting, but his eyes were closed, so I assumed he was sleeping. This had become "our song" when we had first gotten together in 1980. One day after we had become partners in September that year, the song came on the radio while we were at home. Dennis came up behind me, grabbed me in a big hug and said, "Do you know why I like this song so much?"
"No, why?"
"Because it reminds me of the way I feel ever since I met you."
Go ahead; you're entitled. Awwww. I know, sweet, wasn't it? How could you not love a man who says that to you?
Once the words of the song started (there's some instrumental first), I looked at Dennis again to see if he was still sleeping. Much to my surprise, his lips were moving—no sound coming out, just his lips moving. I stared at him throughout the entire song, and he was lip-synching all the way through. Once the song changed, I said, "I saw your lips moving."
The only thing he did was smile. He didn't open his eyes, or turn his head to look at me, he just smiled. We both knew the meaning of the song—no other words were necessary.
Friday, December 17th was the beginning of the end. We found out during the ALS Clinic appointment with the respiratory therapist that his breathing capacity was down to 21% (it had been at 25% the previous visit in November). While his oxygen levels were still over 90 (which is good), it was becoming more and more obvious that his days were numbered. Little did we know that he only had one week left to live.
When we got home from the appointment, there was no one to assist me with getting him into the house, so we took it real slow while he leaned on me getting up the steps. We needed to stop at the landing about halfway up so he could catch his breath. But we did prevail and got him into the house safely. I've mentioned this before, but because he couldn't lie flat on his back, he had been literally living in his recliner, including sleeping. My perception must have been on high, because I decided to sacrifice my own sleep patterns by trying to sleep in the living room with him. I'd start in my own recliner, move to the couch, back to the chair. I was not having all that much luck trying to sleep, but I felt I needed to be in the same room with him as much as possible. I didn't realize it at the time, but my subconscious mind was preparing me for the end. To make matters worse (if that's even possible), our TV died over the weekend. The TV was the only thing that Dennis had to rely on for entertainment, whether it was watching nature shows, the Science Channel, the History Channel, or just listening to the blues on the audio channels, it was all he had. I went through the Sunday supplemental ads from the newspaper, found some pretty good prices on TVs and went to Best Buy to check out their specials. I found what I wanted, and arranged for it to be delivered, installed and the old set taken away on Wednesday. That left Sunday through Tuesday without a TV. I dug out my old portable tape/CD player, and for most of Sunday, we listened to CDs. I contacted our friend, Hugh, who is a high-end audio guy. I told him about the problem with the TV and wanted to know if he could stop by and adjust the cables so we could listen to the audio channels without having to have the TV on. Once he arrived, it took him all of about five seconds to make the switch, and we had sound. Dennis was quite happy that he'd be able to listen to the blues again.
I had been on the phone all weekend long with the hospice, trying to come up with volunteers, or anyone who could show up to stay with Dennis while I went to work. I hated having to go into the office now, even though I was working shorter hours. I just didn't want to leave him alone, I was that worried about him. We were never able to come up with anyone though, so back to work I went on Monday. I'm at most only 15 minutes away (with bad traffic), so I made sure that the phone was right next to his chair in the event he needed me for any reason, he could call.
While he was trying to make himself some lunch on Monday around 12:30, he dropped a spoon on the kitchen floor. In attempting to pick it up, he fell and had to crawl back to the living room and struggle to get into his chair. About 3pm, the doorbell rang. The pharmacy had delivered a prescription for him. After closing the door, he dropped the bottle on the dining room floor and when trying to retrieve it, he fell once again and had to crawl back to the living room, as he could not get himself back up to walk. He stayed there until I got home shortly thereafter, when he told me about his two falling episodes.
We had a very frank discussion about his health. I said, "You know, dear, I really think you're going faster than either one of us realizes at the moment. Neither of us want it to happen, but I'm just afraid the end is near. I'm not going anywhere, I'll be here for you. That's one thing you can definitely count on. I love you so much, and it really pains me to see you suffer so much. I wish there were more I could do."
"I love you too, babe. Thank you so much for everything you do for me."
"While I enjoy the compliments, you don't have to thank me. I do what I can because I love you."
Author note: I need to stop for a while. This is becoming very difficult to write through the tears. I'll come back later.
Tuesday was pretty uneventful, at least until I got home from work that day. Dennis had a difficult night with his breathing. I gave him a couple of doses of morphine during the evening into the night. I was still attempting to sleep in the living room with him, though my sleep was very erratic (not really used to sleeping in a recliner). By Wednesday morning, he had a slight improvement but not enough for me to feel comfortable leaving him home all day by himself, so I called Claire that morning and told her Dennis was in no shape to be by himself and that I wouldn't be in that day. Shortly after 1pm that day, the crew from Best Buy showed up with the new TV, installed it and hauled away the old one. I told Dennis before we turned it on for the first time, "Be prepared to be dazzled. You won't believe the picture as compared to the old set that they just took away."
And dazzled he was! I had to push his chin up because he was staring at the TV with a dropped jaw. I said, "See? I told you."
"Wow. That's all I can say. Wow."
Needless to say, we were both very pleased with the new TV.
Depending on how he was feeling once Thursday morning rolled around would determine if I was going to have to go to work that day or not. He told me he was feeling better than the day before, so because of all the year end things Claire and I do, I decided I'd go in. I made sure and put the phone right next to his chair, in the event he had to reach me. Even then, I didn't really want to go in but I did, though I only stayed until it was time to leave for lunch. I had all the checks written that we were going to do before the Christmas holiday, so I told Claire I was leaving for the day and to enjoy her holiday.
While I was home with Dennis that afternoon, we had been switching between audio channels—the blues channel for him, the classic rock station for me. While I was reading, he was trying to take a nap. At the time, the classic rock station was on. I knew the song as soon as the first couple notes hit—Walking on the Moon by the Police. I looked over at Dennis when it was starting, but his eyes were closed, so I assumed he was sleeping. This had become "our song" when we had first gotten together in 1980. One day after we had become partners in September that year, the song came on the radio while we were at home. Dennis came up behind me, grabbed me in a big hug and said, "Do you know why I like this song so much?"
"No, why?"
"Because it reminds me of the way I feel ever since I met you."
Go ahead; you're entitled. Awwww. I know, sweet, wasn't it? How could you not love a man who says that to you?
Once the words of the song started (there's some instrumental first), I looked at Dennis again to see if he was still sleeping. Much to my surprise, his lips were moving—no sound coming out, just his lips moving. I stared at him throughout the entire song, and he was lip-synching all the way through. Once the song changed, I said, "I saw your lips moving."
The only thing he did was smile. He didn't open his eyes, or turn his head to look at me, he just smiled. We both knew the meaning of the song—no other words were necessary.
The kitchen wizard
From the moment I met him, Dennis was a good cook. When we first started living together (as landlord/tenant), I worked a swing shift (4pm-12midnight), he worked the midnight shift. He would cook dinner each afternoon, then after I left for work, he'd go back to bed for a nap before he had to go to work later in the night. His good cooking continued after we moved to San Francisco, but once the Food Network showed up on the cable lineup, his entire demeanor changed with regard to how and what he cooked. Just by watching a lot of the cooking shows, Dennis turned himself from a cook into a chef. Not only were his meals extremely delicious, he was also cooking healthy meals.
After he got out of the hospital in November, his health was deteriorating quickly. Here he is dying, and he was worried that I wouldn't be able to cook for myself after he was gone. So what does he do? He becomes the "master teacher" in the kitchen, first turning me into his sous chef. I would help chop vegetables, or whatever needed to be done to help him cook dinner. Once December rolled around, it was obvious to me that his health was on a downward spiral, and it was becoming more difficult for him to do anything in the kitchen. After my sous chef training was done, it was time to move on and learn how to make things myself. One of the first things he taught me was how to make a roue so that sauces would be no problem for me. There were times when he'd get upset about how I was doing things. Finally, after one too many outbursts, I had one of my own. "Look, dear," I said, "I do not appreciate you getting upset and yelling at me just because I don't do things the same way you do. I am not you, I will never be you. For one thing, you're right handed and I'm left handed. That right there guarantees that I'm going to be doing things differently than you. As long as the meal gets cooked, and it tastes good, you need to back off with the criticism and let me learn in my own way."
"I'm sorry, babe. I'm just so frustrated that I can't do anything in the kitchen anymore. You know cooking has been my passion for as long as we've been kidding about 'The Quiche Pit' (the facetious name we assigned to a proposed restaurant). Everything you've made so far has been fine. I'll try harder to keep my temper in check."
From that time forward, he was very patient with me and had no further outbursts. In time, I was doing all the prep work and cooking without any help from him. I was honored that he would compliment me on the taste of the meals. I always told him, "I had a good teacher."
One of the problems that can come with ALS is swallowing difficulties. He started having these difficulties about a week before he died. Because of the problems with swallowing, I had to change my kitchen routine from basic meals to soups. One of our favorites is a bleu cheese, potato soup. I'd use the immersion blender to make the soup as smooth as I could, so he wouldn't have to chew.
I was honored to cook for him. After 30 years of cooking for me, it was time to return the favor. While I enjoyed his compliments, I wasn't doing it looking for them. I was doing what I could to make his life easier.
After he got out of the hospital in November, his health was deteriorating quickly. Here he is dying, and he was worried that I wouldn't be able to cook for myself after he was gone. So what does he do? He becomes the "master teacher" in the kitchen, first turning me into his sous chef. I would help chop vegetables, or whatever needed to be done to help him cook dinner. Once December rolled around, it was obvious to me that his health was on a downward spiral, and it was becoming more difficult for him to do anything in the kitchen. After my sous chef training was done, it was time to move on and learn how to make things myself. One of the first things he taught me was how to make a roue so that sauces would be no problem for me. There were times when he'd get upset about how I was doing things. Finally, after one too many outbursts, I had one of my own. "Look, dear," I said, "I do not appreciate you getting upset and yelling at me just because I don't do things the same way you do. I am not you, I will never be you. For one thing, you're right handed and I'm left handed. That right there guarantees that I'm going to be doing things differently than you. As long as the meal gets cooked, and it tastes good, you need to back off with the criticism and let me learn in my own way."
"I'm sorry, babe. I'm just so frustrated that I can't do anything in the kitchen anymore. You know cooking has been my passion for as long as we've been kidding about 'The Quiche Pit' (the facetious name we assigned to a proposed restaurant). Everything you've made so far has been fine. I'll try harder to keep my temper in check."
From that time forward, he was very patient with me and had no further outbursts. In time, I was doing all the prep work and cooking without any help from him. I was honored that he would compliment me on the taste of the meals. I always told him, "I had a good teacher."
One of the problems that can come with ALS is swallowing difficulties. He started having these difficulties about a week before he died. Because of the problems with swallowing, I had to change my kitchen routine from basic meals to soups. One of our favorites is a bleu cheese, potato soup. I'd use the immersion blender to make the soup as smooth as I could, so he wouldn't have to chew.
I was honored to cook for him. After 30 years of cooking for me, it was time to return the favor. While I enjoyed his compliments, I wasn't doing it looking for them. I was doing what I could to make his life easier.
Thursday, March 24, 2011
Struggles and meeting Calvin
After having had a wonderful time at Jim and Greg's for Thanksgiving, it was back to the daily struggles of living with ALS. It hurts me so much to see him struggle, his body revolting against anything that he wants it to do. I love him so much and there's nothing I can do for him except be here. I don't know if that's enough, but it will have to be; I don't have a choice in the matter.
Saturday night, November 27 and it's after midnight. Dennis was in the bathroom when his legs just gave out and he fell. I was already in bed and didn't hear him. He managed to crawl back to the living room and get in his chair for the rest of the night. He told me about the fall the next morning.
Dennis heard from Aragorn on Monday. He will be by on Friday with Calvin, so Dennis will finally be able to meet his only grandchild—after all, he is four and one-half years old. They arrive about 7pm. I answer the door and meet a shy Calvin. I tell him, "You have a very excited grandfather in the living room and he can't wait to meet you. Follow me."
As we all enter the living room, Dennis's face just lights up with a huge smile. "Hi, Calvin. I'm your grandfather. Can I give you a hug?"
He shyly approaches Dennis as Dennis picks him up in a big hug. "It's so nice to meet you, Calvin." Dennis was beaming.
After the initial shyness wore off, Calvin turned out to be a real handful. He had brought numerous toys with him as Aragorn figured he'd need diversions from being with adults. Dennis tried to engage him in conversation, but he mostly played with his toys. When it was about time to leave, Aragorn told him to put his toys back in the bag, but Calvin wasn't ready to leave. He threw what we considered to be a tantrum; we just looked at each other as if saying, "What's this all about?"
After they left, Dennis looked at me and said, "I guess we don't need to worry about being babysitters for that one. He obviously has control over Aragorn, probably his mother too. What a little hellcat!"
Dennis was very happy though. He had finally met his only grandchild.
Saturday night, November 27 and it's after midnight. Dennis was in the bathroom when his legs just gave out and he fell. I was already in bed and didn't hear him. He managed to crawl back to the living room and get in his chair for the rest of the night. He told me about the fall the next morning.
Dennis heard from Aragorn on Monday. He will be by on Friday with Calvin, so Dennis will finally be able to meet his only grandchild—after all, he is four and one-half years old. They arrive about 7pm. I answer the door and meet a shy Calvin. I tell him, "You have a very excited grandfather in the living room and he can't wait to meet you. Follow me."
As we all enter the living room, Dennis's face just lights up with a huge smile. "Hi, Calvin. I'm your grandfather. Can I give you a hug?"
He shyly approaches Dennis as Dennis picks him up in a big hug. "It's so nice to meet you, Calvin." Dennis was beaming.
After the initial shyness wore off, Calvin turned out to be a real handful. He had brought numerous toys with him as Aragorn figured he'd need diversions from being with adults. Dennis tried to engage him in conversation, but he mostly played with his toys. When it was about time to leave, Aragorn told him to put his toys back in the bag, but Calvin wasn't ready to leave. He threw what we considered to be a tantrum; we just looked at each other as if saying, "What's this all about?"
After they left, Dennis looked at me and said, "I guess we don't need to worry about being babysitters for that one. He obviously has control over Aragorn, probably his mother too. What a little hellcat!"
Dennis was very happy though. He had finally met his only grandchild.
Wednesday, March 23, 2011
Back from the hospital
Before Dennis arrived back home from his pneumonia bout and his hospital stay, Hospice by the Bay arranged for an oxygen machine to be delivered, as it was determined while he was in the hospital that he should be on oxygen 24 hours a day. In addition to the machine, they also dropped off fifty feet of flexible tubing, enabling Dennis to get around the house without having to hook up and or disconnect the air tube each time he wanted to move.
One of the first things I did once he was home was to weigh him, as we both were sure he had lost weight while in the hospital. He was down to 124 pounds. Consistent weight loss is one of the biggest problems with ALS, as the more weight you lose, the worse the disease becomes. Monday night, November 15, after I had gone to bed, Dennis got tangled up in his tubing while attempting to get to the bathroom and fell in the living room. He managed to pull himself up into his chair. He continues to feel bad; he feels it's taking a long time to get better.
His next scheduled appointment at the ALS Clinic was on Wednesday the 24th, the day before Thanksgiving. We had postponed one appointment to give him a better chance to regain his strength from his hospital stay. While it was a "clinic appointment" (where we meet with all the doctors involved in his case), we didn't see all the doctors this time. They were most concerned with his breathing, so most of our time was with the respiratory therapist, along with his regular ALS doctor. His breathing numbers were pretty bad; his lung capacity function was down to 25% and his muscle atrophy had spread from just his lower left leg up into the upper part of the leg; there was also noticeable muscle loss in his right leg. While meeting with Dr. Lomen-Hoerth, she mentioned that during the last appointment, she had recommended we sign up with hospice so that we could get to know them. This time, she stated, "The last time you were in, Dennis, I had told you that the ALS was still slowly progressing, even though you were a borderline hospice case. I now feel that hospice is your best alternative. The pneumonia you experienced earlier in the month has suddenly made the ALS progress at a much quicker time frame. I'll keep monitoring you monthly, instead of quarterly as we have been doing."
After running him through some strength tests, the appointment was concluded. We scheduled the next appointment for Friday December 17. I had gotten a wheelchair from the reception area to make the trip to the clinic easier for Dennis. He needed to use the bathroom, so after finishing up in there, I said, "I'm going to stick my head in Dr. Lomen-Hoerth's office a minute to get something clarified. I'll leave you here for a minute; be right back."
I walked back to the office, found Dr. Lomen-Hoerth and asked, "I want to be sure I'm clear about what you just told us, doctor. When you said he's now 'definitely hospice' does that mean you concur with the prognosis that the doctors at General gave us? That he's in his last six months of life?"
"Yes, that is what I was saying," replied the doctor. "And so you're prepared, Rick, not only is he in his last six months, it could be any time."
"Thank you for being candid with me. I appreciate it, as it will help me prepare myself."
I numbly went back down the hall to Dennis. We were both quiet on the ride in the elevator. Once we got to the ground floor, I wheeled him near the door and went to the valet service to have them bring the car around. They helped me get him into the car for the ride home. While waiting for the car, I phoned Aragorn to see if he could meet us at the house and help me get Dennis up the stairs. He said he'd meet us there.
While driving back to the house, I broke the silence in the car by stating, "That sure wasn't good news she was giving us today, was it? The reason I stuck my head back in her office was I wanted to get clarification about the hospice services she was talking about. She was kind of cryptic, saying that you're definitely hospice material now, without coming right out and saying you've got less than six months left to live. She told me that not only are you in the last six months, she also told me to be prepared because the end could come at any time. I'm not telling you this to scare you, or upset you, I'm just trying to be honest—just like we've always been with each other."
He didn't say anything. I reached over and patted his leg. "We'll get through this, dear. You know I'm not going anywhere."
I arrived first, but he pulled in about five minutes later. It was the first time Dennis had seen him since December 2009; I had not seen him in over five years. He's taller than his Dad (and much heavier) so it was fairly easy for him to assist Dennis up the steps. We all got settled into the living room and filled him in on the latest news with respect to Dennis's condition. At one point, Dennis had to use the bathroom. While he was in there, I whispered to Aragorn, "The news we got today is nothing but bad. She told me that he's in his last six months of life, and she also warned me to be prepared as it could be any time. I'm sorry I have to tell you this, but those are the facts, Aragorn. I hope you're able to bring Calvin by sometime soon, because he's not going to be around much longer and I know he desperately wants to meet his grandson. Will you do that for us? For him?"
"Yes, Rick. I will bring him by next week. I promise."
After another 30 minutes of visiting, Aragorn left, promising his Dad that he'd bring Calvin by the following week.
The next day was Thanksgiving. For the past few years (I've lost track on exactly how many) we've been going to Jim and Greg's house, as Jim has been having an open house Thanksgiving for over 20 years, making sure that friends who may not have anywhere to go can come to his house. I asked Dennis, "Do you think you're going to be up to going to Jim and Greg's tomorrow?"
"I don't know, babe. I'm feeling pretty weak right now. Let's see how I feel in the morning and we'll take it from there."
One of the problems Dennis experienced once he got home from the hospital was his inability to lie flat on his back, which meant he couldn't sleep in the bed any longer. He had been sleeping in his recliner in the living room; it was the best we could do under the circumstances. I really missed having him in bed with me.
The next morning, Dennis was feeling pretty chipper and decided he'd make a loaf of bread to take to the dinner. He had already made the pumpkin cheesecake but didn't have the energy to make up his vegetable broth to ensure a large amount of gravy. While he was busy in the kitchen making the bread, I phoned Jim to see if he'd be able to help me get Dennis down the front steps and then come back with us to help me get him back into the house. He was agreeable; I told him I'd pick him up about 12:30, come back to the house, get Dennis, then head back to his house.
The day went without a hitch. Dennis thoroughly enjoyed himself, as just about everyone that showed up had not seen him in quite some time, as he had been house-bound for about six weeks. Everyone welcomed him with hugs; you couldn't wipe the smile off his face all day. We didn't know it at the time, but it turned out to be his last public appearance. The only time he got out of the house after this excursion was for his appointment at the ALS Clinic on December 17.
One of the first things I did once he was home was to weigh him, as we both were sure he had lost weight while in the hospital. He was down to 124 pounds. Consistent weight loss is one of the biggest problems with ALS, as the more weight you lose, the worse the disease becomes. Monday night, November 15, after I had gone to bed, Dennis got tangled up in his tubing while attempting to get to the bathroom and fell in the living room. He managed to pull himself up into his chair. He continues to feel bad; he feels it's taking a long time to get better.
His next scheduled appointment at the ALS Clinic was on Wednesday the 24th, the day before Thanksgiving. We had postponed one appointment to give him a better chance to regain his strength from his hospital stay. While it was a "clinic appointment" (where we meet with all the doctors involved in his case), we didn't see all the doctors this time. They were most concerned with his breathing, so most of our time was with the respiratory therapist, along with his regular ALS doctor. His breathing numbers were pretty bad; his lung capacity function was down to 25% and his muscle atrophy had spread from just his lower left leg up into the upper part of the leg; there was also noticeable muscle loss in his right leg. While meeting with Dr. Lomen-Hoerth, she mentioned that during the last appointment, she had recommended we sign up with hospice so that we could get to know them. This time, she stated, "The last time you were in, Dennis, I had told you that the ALS was still slowly progressing, even though you were a borderline hospice case. I now feel that hospice is your best alternative. The pneumonia you experienced earlier in the month has suddenly made the ALS progress at a much quicker time frame. I'll keep monitoring you monthly, instead of quarterly as we have been doing."
After running him through some strength tests, the appointment was concluded. We scheduled the next appointment for Friday December 17. I had gotten a wheelchair from the reception area to make the trip to the clinic easier for Dennis. He needed to use the bathroom, so after finishing up in there, I said, "I'm going to stick my head in Dr. Lomen-Hoerth's office a minute to get something clarified. I'll leave you here for a minute; be right back."
I walked back to the office, found Dr. Lomen-Hoerth and asked, "I want to be sure I'm clear about what you just told us, doctor. When you said he's now 'definitely hospice' does that mean you concur with the prognosis that the doctors at General gave us? That he's in his last six months of life?"
"Yes, that is what I was saying," replied the doctor. "And so you're prepared, Rick, not only is he in his last six months, it could be any time."
"Thank you for being candid with me. I appreciate it, as it will help me prepare myself."
I numbly went back down the hall to Dennis. We were both quiet on the ride in the elevator. Once we got to the ground floor, I wheeled him near the door and went to the valet service to have them bring the car around. They helped me get him into the car for the ride home. While waiting for the car, I phoned Aragorn to see if he could meet us at the house and help me get Dennis up the stairs. He said he'd meet us there.
While driving back to the house, I broke the silence in the car by stating, "That sure wasn't good news she was giving us today, was it? The reason I stuck my head back in her office was I wanted to get clarification about the hospice services she was talking about. She was kind of cryptic, saying that you're definitely hospice material now, without coming right out and saying you've got less than six months left to live. She told me that not only are you in the last six months, she also told me to be prepared because the end could come at any time. I'm not telling you this to scare you, or upset you, I'm just trying to be honest—just like we've always been with each other."
He didn't say anything. I reached over and patted his leg. "We'll get through this, dear. You know I'm not going anywhere."
I arrived first, but he pulled in about five minutes later. It was the first time Dennis had seen him since December 2009; I had not seen him in over five years. He's taller than his Dad (and much heavier) so it was fairly easy for him to assist Dennis up the steps. We all got settled into the living room and filled him in on the latest news with respect to Dennis's condition. At one point, Dennis had to use the bathroom. While he was in there, I whispered to Aragorn, "The news we got today is nothing but bad. She told me that he's in his last six months of life, and she also warned me to be prepared as it could be any time. I'm sorry I have to tell you this, but those are the facts, Aragorn. I hope you're able to bring Calvin by sometime soon, because he's not going to be around much longer and I know he desperately wants to meet his grandson. Will you do that for us? For him?"
"Yes, Rick. I will bring him by next week. I promise."
After another 30 minutes of visiting, Aragorn left, promising his Dad that he'd bring Calvin by the following week.
The next day was Thanksgiving. For the past few years (I've lost track on exactly how many) we've been going to Jim and Greg's house, as Jim has been having an open house Thanksgiving for over 20 years, making sure that friends who may not have anywhere to go can come to his house. I asked Dennis, "Do you think you're going to be up to going to Jim and Greg's tomorrow?"
"I don't know, babe. I'm feeling pretty weak right now. Let's see how I feel in the morning and we'll take it from there."
One of the problems Dennis experienced once he got home from the hospital was his inability to lie flat on his back, which meant he couldn't sleep in the bed any longer. He had been sleeping in his recliner in the living room; it was the best we could do under the circumstances. I really missed having him in bed with me.
The next morning, Dennis was feeling pretty chipper and decided he'd make a loaf of bread to take to the dinner. He had already made the pumpkin cheesecake but didn't have the energy to make up his vegetable broth to ensure a large amount of gravy. While he was busy in the kitchen making the bread, I phoned Jim to see if he'd be able to help me get Dennis down the front steps and then come back with us to help me get him back into the house. He was agreeable; I told him I'd pick him up about 12:30, come back to the house, get Dennis, then head back to his house.
The day went without a hitch. Dennis thoroughly enjoyed himself, as just about everyone that showed up had not seen him in quite some time, as he had been house-bound for about six weeks. Everyone welcomed him with hugs; you couldn't wipe the smile off his face all day. We didn't know it at the time, but it turned out to be his last public appearance. The only time he got out of the house after this excursion was for his appointment at the ALS Clinic on December 17.
Sunday, March 20, 2011
Hospice arrives
Backtracking a month or so from my last entry (when Dennis got home from the hospital on Sunday November 14), we had an appointment at the ALS Clinic in late September. From that came the news that Dennis was "borderline hospice" and Doctor Lomen-Hoerth thought it would be a good idea to get signed up with hospice services, so that we could get to know some of the people that we would be working with in the coming months. She routinely had her patients sign up for services as soon as they were eligible, to establish rapport with the new caregivers.
We did an intake interview with a representative from Hospice By the Bay (I cannot remember her name). It was done at our dining room table, and at that time, Dennis was still walking with just his cane, though it was obvious to me that his walking had become more problematic than it had been in the recent past. During the intake, while running Dennis through some simple tests, he almost fell twice. After the second time, Susan (I have to call her something, right?) stated, "I'm ordering you a walker." Dennis responded, "I don't want a walker. They're for old people."
I looked at Dennis, then at Susan. "Thank you for saying that, Susan. I've been trying to convince him that his walking has become more unsteady and he needs more support than he can get from just his cane, but he's been very obstinate about it." Looking back at Dennis, I continued, "Dennis, we're trying to make sure that you remain as safe as possible. I'm sure the walker she's ordering is going to be a sturdy one, not like the flimsy one they had you try at General once. Let's just give it a try and see how it goes. Okay?"
Still pouting, Dennis replied, "I'll give it a try, but I know I'm not going to like it."
Later that same day, the doorbell rang. When I answered, a man was standing there with a walker and a clipboard with paperwork for me to sign. "This is for Dennis Healy. Do I have the right place?"
"Yes, I have a Dennis here. I'll sign for it. I'm surprised it got here so quickly. Thank you," I replied, signing on the dotted line.
I was pleasantly surprised at the sturdiness of the walker. It definitely was well-built. I carried it back to the living room; upon entering, I said, "Look dear, your walker is here. It's real sturdy, just like I figured it would be."
I will give him credit—he started using it immediately, albeit with grumpiness. Coming back into the living room from the bathroom, the wheels got caught on the living room area rug, and he almost fell, but I was able to jump up and grab him before he did. I decided at that point to remove the area rug. I managed to make it fit in the front computer room. I also rolled up the carpet runner we have in the kitchen, allowing freedom from having to worry about getting snagged again.
I was very hopeful that the walker would help, as between August 19th and October 1st, he had fallen eight separate times, and those are just the times I knew about. There could have been times when he fell while he was alone and he didn't bother to tell me.
After the intake interview, within the next 10 days, we met our primary nurse, Peter Mao. He came by and introduced himself and told us how to use the "comfort drugs" that had been delivered. We also met with June Jackson, the social worker who was in charge of coordinating services. The services they provided were a welcome relief for me, as it gave me access to professionals who could offer me advice when I needed it.
We did an intake interview with a representative from Hospice By the Bay (I cannot remember her name). It was done at our dining room table, and at that time, Dennis was still walking with just his cane, though it was obvious to me that his walking had become more problematic than it had been in the recent past. During the intake, while running Dennis through some simple tests, he almost fell twice. After the second time, Susan (I have to call her something, right?) stated, "I'm ordering you a walker." Dennis responded, "I don't want a walker. They're for old people."
I looked at Dennis, then at Susan. "Thank you for saying that, Susan. I've been trying to convince him that his walking has become more unsteady and he needs more support than he can get from just his cane, but he's been very obstinate about it." Looking back at Dennis, I continued, "Dennis, we're trying to make sure that you remain as safe as possible. I'm sure the walker she's ordering is going to be a sturdy one, not like the flimsy one they had you try at General once. Let's just give it a try and see how it goes. Okay?"
Still pouting, Dennis replied, "I'll give it a try, but I know I'm not going to like it."
Later that same day, the doorbell rang. When I answered, a man was standing there with a walker and a clipboard with paperwork for me to sign. "This is for Dennis Healy. Do I have the right place?"
"Yes, I have a Dennis here. I'll sign for it. I'm surprised it got here so quickly. Thank you," I replied, signing on the dotted line.
I was pleasantly surprised at the sturdiness of the walker. It definitely was well-built. I carried it back to the living room; upon entering, I said, "Look dear, your walker is here. It's real sturdy, just like I figured it would be."
I will give him credit—he started using it immediately, albeit with grumpiness. Coming back into the living room from the bathroom, the wheels got caught on the living room area rug, and he almost fell, but I was able to jump up and grab him before he did. I decided at that point to remove the area rug. I managed to make it fit in the front computer room. I also rolled up the carpet runner we have in the kitchen, allowing freedom from having to worry about getting snagged again.
I was very hopeful that the walker would help, as between August 19th and October 1st, he had fallen eight separate times, and those are just the times I knew about. There could have been times when he fell while he was alone and he didn't bother to tell me.
After the intake interview, within the next 10 days, we met our primary nurse, Peter Mao. He came by and introduced himself and told us how to use the "comfort drugs" that had been delivered. We also met with June Jackson, the social worker who was in charge of coordinating services. The services they provided were a welcome relief for me, as it gave me access to professionals who could offer me advice when I needed it.
Saturday, March 19, 2011
It's getting worse
We're home now after our trip to Michigan. We're both still glowing with all the memories we shared during the family reunion. The trip was good for both of us but especially for Dennis. And now that we're home, I'm noticing small changes in the way Dennis moves around; I can tell it's really becoming a struggle just to walk around the house (still using his cane, of course). He's also using his Bi-pap machine to help with his breathing, even all the way through the night. It took a while to get used to it, but both of us are able to sleep with the machine going, though truth be told, it's not very good sleep. But whatever it takes...
The "perfect storm" hit the pool team. Marquita had a major motorcycle accident during her motorcycle training with the SFPD (police department). She tore three ligaments and her ACL in her left knee, along with bruising her tibia. She's going to have to have surgery, then about eight months of recovery time, so her pool-playing days for this season are over. Carl came down with pneumonia and is in the hospital. Kate is gone for two weeks with her family on a trip around the country, and when I got home from work today, Dennis was not feeling well at all and said he didn't want to go to the pool match. Which left Humberto and I to play a 16-game match, but giving away eight forfeits. Surprisingly, we both played really well and walked out of the match with an 8-8 tie, winning all 8 games played. The following week, Dennis was able to go to the match, but after that, he just couldn't gather the strength it takes to go up and down our front stairs (35 steps from the front door to the sidewalk - even harder coming back up). So, what this means is that he's now for the most part home-bound. He certainly can't get out on his own, and I have to work (sure it would be nice to be independently wealthy, but dream on, right?). Dennis has retired from playing pool, after 26 years of being in the league with me. The matches seem strange, not seeing him sitting along the sidelines, cheering each of us on as we play.
The calendar has changed over to November, and the MVP Tournament is approaching. I had asked Humberto to play, as we have a history of asking the highest ranked player on the team to represent us at the MVP. But he had been having back problems, and begged off playing. As the 2nd ranked player on the team, I was next up, but I was wavering because I didn't want to leave Dennis by himself. He convinced me he'd be okay though, so on Saturday November 5, I drove downtown to play in the tournament. Before I left the house, Dennis was tired and went back to bed for a nap. I popped in to kiss him, he was dozing, so I kissed his forehead and said, "See you later."
I've won the MVP Tournament three times over the years, and usually do pretty well when playing in it. Much to my surprise, I was bounced from the tournament without winning a match; in fact, I didn't even win a game in the two matches I played, a very rare occurrence for me. I was scratching my head on the way back to the car, trying to figure out what had just happened. It all became clear the moment I walked in the door at home. From the living room, I heard Dennis say, "Is that my Rick?" His voice had a very troubled sound to it. While I was taking off my jacket, he came around the corner from the living room, and he was in tears. "What's the matter?" I said.
"I've been so worried about you. I've been having trouble breathing since I got up, I tried calling you on your cell phone, kept getting voice mail, and I've been frantic that something happened to you."
"I've been at the pool tournament. We talked about it last night and this morning."
"Oh my god," he said, gasping and covering his mouth with his hand. "I thought you had gone to the grocery store and I've been worried sick, because it usually only takes you about an hour, and it's been almost 3 hours since you left."
I rushed over, giving him a big hug. "I'm sorry dear. If I'd known you didn't realize where I was going, I should have specifically said, 'I'm off to the pool tournament' none of this would have happened. It's all my fault. I'm here now, what can I do for you?"
"I think I'm coming down with bronchitis. I've been coughing and having trouble with my breathing. At the least, I need some cough medicine. Can you go get some for me?"
"Well, of course I can and will. I might as well go to Safeway, get it there and do the little amount of shopping I was going to do. I can get both out of the way. I'll be back shortly. Why don't you just recline in your chair, try to relax. I'll find something for you. I'll be back before you know it."
I was practically in tears on the way to the store. I felt just terrible, even though I had done nothing wrong. To think I had accidentally caused him so much pain, I was very distraught. I raced through the store, found some cough medicine, and hurried back to the house. I gave him a dose of medicine as soon as I returned, and it did seem to alleviate the symptoms, at least a little bit. Later that afternoon, he looked at me and said, "I don't think this medicine is helping me all that much. Can you call a nurse at the hospice?"
"If that's what you want, of course I will." I called the hospice, was told they'd contact a nurse, who would then call us back. Less than 20 minutes later, the call came. I told her what was going on, and she said she'd be over in about an hour, as she had to drive down from Marin County. After she arrived, she checked Dennis over and called in for a prescription cough syrup, with codeine, which had always helped him in the past with bronchitis-like symptoms. They delivered the prescription and for a couple of days, it seemed to be helping. By Thursday though, his condition started getting worse. I phoned the hospice so I could talk to his primary nurse, Peter. He said he'd stop by the house and take a look. I got home from work about 3:15pm, and Peter was at the house. We were both concerned, as Dennis's breathing was getting very labored. I tried reaching his doctor at SF General, but going through their voice mail hell of a phone system just pissed me off. So I sent him an email, figuring I'd be lucky to hear from him, but 20 minutes later, he phoned. I gave him the story and he thought it would be best if I took him into emergency.
Peter and I helped Dennis struggle down the front stairs, and I drove him to the ER. I went inside first, and told them I had an ALS patient, struggling with his breathing in the car and needed a wheelchair to bring him in. She told me they'd be right out, so I went back to the car to wait. Within a couple of minutes, there were two aides coming at us, one with a wheelchair. We managed to get him situated, and rolled into ER. I got in the car and went to find a parking spot. By the time I got back into ER, they had already put him in a room, had him on oxygen and a saline drip. His breathing numbers were 86 (normal is between 92-98), so they wanted to do some tests. After about an hour and a half, they were pretty sure they wanted to keep him overnight, so with tests yet to do, I left and told him I'd check in on him the next morning.
When I stopped by the next morning on my way to work, he had been put into a semi-private room. The first thing he said was, "Get me out of here. I hate it."
"I know you do, dear, but we have to keep you here until they know what's going on. What did they tell you after I left last night?"
"They told me I've got pneumonia. They tried having me on their Bi-pap machine, but it's an older model than what I have at home, and they couldn't get it calibrated correctly, so I can't use it. I'm hungry but they don't want me to have any solid foods at the moment. I want to leave right now."
"You can't leave right now, and you know it," I replied. "We have to give them a chance to get you better before they send you back home. Just hang in there. I'm going to the office now, but I'll stop back when I get off this afternoon at three. I love you," I said, giving him a kiss.
When I got back to the hospital later that day, he was napping. So I went to the nurse's station and asked if I could speak to his doctor. In the hall outside of his room, the doctor said, "I'm not sure what to tell you."
"How about the truth? I can handle it. And I'd prefer you being totally honest with me."
Looking a bit startled at my candor, the doctor replied, "Okay. Due to his underlying ALS, we feel he's most likely within his last 6-8 months of life. While there's nothing we can do about the ALS, we want to treat his pneumonia; that will make him feel quite a bit better. But I'm recommending that he stay for a couple of days."
"Thank you for your honesty, doctor. We both realize he's dying, so anything you say is not going to be a surprise, at least not to me. I'm going to go visit him for a bit. Thank you again, doctor."
I went in and gave Dennis the news about him having to stay for a couple more days. He was not pleased. I said, "I'm going to go now, get some dinner and then I'll be back early evening. Just do as the doctors and nurses tell you, and we'll have you out of here before the weekend is over."
When I returned to the hospital after dinner, Dennis was sleeping when I first got there. As I looked at him while he was sleeping, I was shocked at his appearance. I was truly afraid that he wouldn't survive the night, he looked so frail. I had to step out of the room because I didn't want him to see the tears. After composing myself, I went back in the room and sat by his bed, watching him sleep. About 20 minutes later, he stirred and opened his eyes. Seeing me, he immediately smiled. We visited briefly, but I felt he needed rest, so I didn't want to stay too long. Well, I wanted to stay, but I felt it was best if I didn't...know what I mean? It was the right decision, as when I arrived the next morning, his appearance had done a complete 180 degree turn. His color was back, he was cheerful, which made me feel better too. After talking with the doctors, they wanted him to stay one more day, with a possible release on Sunday. Which is what happened. The hospice arranged for an ambulance to bring him home, relieving me of the chore of finding someone who could help me get him into the house. I've never seen a bigger smile on his face as he was taken from the ambulance and carried up the stairs by the two attendants.
"I'm home," he said. "It's so nice to be here. I hated that hospital."
"I know, dear. It's great to have you back home."
The "perfect storm" hit the pool team. Marquita had a major motorcycle accident during her motorcycle training with the SFPD (police department). She tore three ligaments and her ACL in her left knee, along with bruising her tibia. She's going to have to have surgery, then about eight months of recovery time, so her pool-playing days for this season are over. Carl came down with pneumonia and is in the hospital. Kate is gone for two weeks with her family on a trip around the country, and when I got home from work today, Dennis was not feeling well at all and said he didn't want to go to the pool match. Which left Humberto and I to play a 16-game match, but giving away eight forfeits. Surprisingly, we both played really well and walked out of the match with an 8-8 tie, winning all 8 games played. The following week, Dennis was able to go to the match, but after that, he just couldn't gather the strength it takes to go up and down our front stairs (35 steps from the front door to the sidewalk - even harder coming back up). So, what this means is that he's now for the most part home-bound. He certainly can't get out on his own, and I have to work (sure it would be nice to be independently wealthy, but dream on, right?). Dennis has retired from playing pool, after 26 years of being in the league with me. The matches seem strange, not seeing him sitting along the sidelines, cheering each of us on as we play.
The calendar has changed over to November, and the MVP Tournament is approaching. I had asked Humberto to play, as we have a history of asking the highest ranked player on the team to represent us at the MVP. But he had been having back problems, and begged off playing. As the 2nd ranked player on the team, I was next up, but I was wavering because I didn't want to leave Dennis by himself. He convinced me he'd be okay though, so on Saturday November 5, I drove downtown to play in the tournament. Before I left the house, Dennis was tired and went back to bed for a nap. I popped in to kiss him, he was dozing, so I kissed his forehead and said, "See you later."
I've won the MVP Tournament three times over the years, and usually do pretty well when playing in it. Much to my surprise, I was bounced from the tournament without winning a match; in fact, I didn't even win a game in the two matches I played, a very rare occurrence for me. I was scratching my head on the way back to the car, trying to figure out what had just happened. It all became clear the moment I walked in the door at home. From the living room, I heard Dennis say, "Is that my Rick?" His voice had a very troubled sound to it. While I was taking off my jacket, he came around the corner from the living room, and he was in tears. "What's the matter?" I said.
"I've been so worried about you. I've been having trouble breathing since I got up, I tried calling you on your cell phone, kept getting voice mail, and I've been frantic that something happened to you."
"I've been at the pool tournament. We talked about it last night and this morning."
"Oh my god," he said, gasping and covering his mouth with his hand. "I thought you had gone to the grocery store and I've been worried sick, because it usually only takes you about an hour, and it's been almost 3 hours since you left."
I rushed over, giving him a big hug. "I'm sorry dear. If I'd known you didn't realize where I was going, I should have specifically said, 'I'm off to the pool tournament' none of this would have happened. It's all my fault. I'm here now, what can I do for you?"
"I think I'm coming down with bronchitis. I've been coughing and having trouble with my breathing. At the least, I need some cough medicine. Can you go get some for me?"
"Well, of course I can and will. I might as well go to Safeway, get it there and do the little amount of shopping I was going to do. I can get both out of the way. I'll be back shortly. Why don't you just recline in your chair, try to relax. I'll find something for you. I'll be back before you know it."
I was practically in tears on the way to the store. I felt just terrible, even though I had done nothing wrong. To think I had accidentally caused him so much pain, I was very distraught. I raced through the store, found some cough medicine, and hurried back to the house. I gave him a dose of medicine as soon as I returned, and it did seem to alleviate the symptoms, at least a little bit. Later that afternoon, he looked at me and said, "I don't think this medicine is helping me all that much. Can you call a nurse at the hospice?"
"If that's what you want, of course I will." I called the hospice, was told they'd contact a nurse, who would then call us back. Less than 20 minutes later, the call came. I told her what was going on, and she said she'd be over in about an hour, as she had to drive down from Marin County. After she arrived, she checked Dennis over and called in for a prescription cough syrup, with codeine, which had always helped him in the past with bronchitis-like symptoms. They delivered the prescription and for a couple of days, it seemed to be helping. By Thursday though, his condition started getting worse. I phoned the hospice so I could talk to his primary nurse, Peter. He said he'd stop by the house and take a look. I got home from work about 3:15pm, and Peter was at the house. We were both concerned, as Dennis's breathing was getting very labored. I tried reaching his doctor at SF General, but going through their voice mail hell of a phone system just pissed me off. So I sent him an email, figuring I'd be lucky to hear from him, but 20 minutes later, he phoned. I gave him the story and he thought it would be best if I took him into emergency.
Peter and I helped Dennis struggle down the front stairs, and I drove him to the ER. I went inside first, and told them I had an ALS patient, struggling with his breathing in the car and needed a wheelchair to bring him in. She told me they'd be right out, so I went back to the car to wait. Within a couple of minutes, there were two aides coming at us, one with a wheelchair. We managed to get him situated, and rolled into ER. I got in the car and went to find a parking spot. By the time I got back into ER, they had already put him in a room, had him on oxygen and a saline drip. His breathing numbers were 86 (normal is between 92-98), so they wanted to do some tests. After about an hour and a half, they were pretty sure they wanted to keep him overnight, so with tests yet to do, I left and told him I'd check in on him the next morning.
When I stopped by the next morning on my way to work, he had been put into a semi-private room. The first thing he said was, "Get me out of here. I hate it."
"I know you do, dear, but we have to keep you here until they know what's going on. What did they tell you after I left last night?"
"They told me I've got pneumonia. They tried having me on their Bi-pap machine, but it's an older model than what I have at home, and they couldn't get it calibrated correctly, so I can't use it. I'm hungry but they don't want me to have any solid foods at the moment. I want to leave right now."
"You can't leave right now, and you know it," I replied. "We have to give them a chance to get you better before they send you back home. Just hang in there. I'm going to the office now, but I'll stop back when I get off this afternoon at three. I love you," I said, giving him a kiss.
When I got back to the hospital later that day, he was napping. So I went to the nurse's station and asked if I could speak to his doctor. In the hall outside of his room, the doctor said, "I'm not sure what to tell you."
"How about the truth? I can handle it. And I'd prefer you being totally honest with me."
Looking a bit startled at my candor, the doctor replied, "Okay. Due to his underlying ALS, we feel he's most likely within his last 6-8 months of life. While there's nothing we can do about the ALS, we want to treat his pneumonia; that will make him feel quite a bit better. But I'm recommending that he stay for a couple of days."
"Thank you for your honesty, doctor. We both realize he's dying, so anything you say is not going to be a surprise, at least not to me. I'm going to go visit him for a bit. Thank you again, doctor."
I went in and gave Dennis the news about him having to stay for a couple more days. He was not pleased. I said, "I'm going to go now, get some dinner and then I'll be back early evening. Just do as the doctors and nurses tell you, and we'll have you out of here before the weekend is over."
When I returned to the hospital after dinner, Dennis was sleeping when I first got there. As I looked at him while he was sleeping, I was shocked at his appearance. I was truly afraid that he wouldn't survive the night, he looked so frail. I had to step out of the room because I didn't want him to see the tears. After composing myself, I went back in the room and sat by his bed, watching him sleep. About 20 minutes later, he stirred and opened his eyes. Seeing me, he immediately smiled. We visited briefly, but I felt he needed rest, so I didn't want to stay too long. Well, I wanted to stay, but I felt it was best if I didn't...know what I mean? It was the right decision, as when I arrived the next morning, his appearance had done a complete 180 degree turn. His color was back, he was cheerful, which made me feel better too. After talking with the doctors, they wanted him to stay one more day, with a possible release on Sunday. Which is what happened. The hospice arranged for an ambulance to bring him home, relieving me of the chore of finding someone who could help me get him into the house. I've never seen a bigger smile on his face as he was taken from the ambulance and carried up the stairs by the two attendants.
"I'm home," he said. "It's so nice to be here. I hated that hospital."
"I know, dear. It's great to have you back home."
Monday, March 14, 2011
Family reunion
It seemed like we no sooner returned from LA to find out that Dennis's brother John (who lives outside Phoenix) was planning to visit their two sisters, Sandie and Eileen, who both live in Franklin, Michigan (a nice suburb of Detroit). Because Dennis and his siblings had not been with each other since 1998, I checked with Claire at the office to make sure I could get the time off, and when she agreed, I immediately went on-line and booked us round trip to Detroit. We flew back on September 1st—our 30th anniversary. We thought it was a unique way to celebrate. Eileen and her husband John picked us up at the airport and we then went to Miller's Bar in Dearborn to meet up with Sandie and Ray for a late dinner (for them, as it was 10pm; 7pm our body time). When I mentioned that it was our anniversary, we discovered that between the six of us, there was 107 years of companionship—43 years for Sandie & Ray, 36 years for Eileen & John, and 30 years for us. We all thought it was quite an accomplishment. After gorging ourselves on burgers, fries, onion rings, and a beer, we all piled into cars and headed to Sandie & Ray's. Upon arriving, Sandie had a cake awaiting on the dining room table for us, decorated with "Happy Anniversary" on it. I love Dennis's family! Every time in the past when we've visited, we've stayed upstairs in one of Dennis's niece's rooms. But this time, because of his diminished walking ability (especially up a flight of stairs), Sandie had made up the "den" into a bedroom for us because it was on the main floor and Dennis wouldn't have to climb any stairs.
The entire weekend was a giant blast. Not only did Dennis thoroughly enjoy himself, I did too. I've posted photos of that weekend on my Facebook page and I will eventually post some of them here as well. You can tell from the photos that Dennis was extremely happy. I particularly like the photo of us that his nephew John took. I didn't know it at the time, but that turned out to be the last photo taken of Dennis and I together. It has become my favorite photo of us, not only because it was the last one of us, but we each look so happy. You don't even have to look at Dennis's mouth to see how happy he is, look at his eyes and you'll see all the happiness you could hope for. That photo was taken on Sunday September 5th during the huge party that Sandie threw. There were over 30 relatives that came that day, and the amazing part was that I already knew about 95% of them.
During the five days we were there, Sandie, John and Eileen each separately and without provocation, told me how much they loved me and how much they appreciated my taking care of Dennis. I told them, "I only do it because I love him so much. It's not easy watching all this happen to him and not be able to do anything but what I'm doing." How can you not love a family that treats you like that, right?
I did get to see my younger brother and his wife while we were in town. I had told Mom that I would not be able to get up to Traverse City to visit on this trip, as it was mostly for Dennis and his family, of which I am a part. She was fully understanding, just like a mother should be. It was great seeing John and Nancy; I had not seen Nancy in such a long time that neither of us could remember when it had been, so I guess it had been a number of years.
The trip home was pretty uneventful, though the airline changed our seats when they saw that Dennis needed a wheelchair. We ended up in the first row of seats beyond first class, which actually pissed me off a bit, as it meant that there was nowhere in front of us to store our extra bag (like we always do). I had to put everything in the overhead bin, but before I could do that, I had to dig out my book, water, etc. because I couldn't keep it in front of me like I always do. Good intentions, but they could have asked.
 |
| Left to right: Mary & John, Ray & Sandie, John & Eileen, Rick & Dennis |
During the five days we were there, Sandie, John and Eileen each separately and without provocation, told me how much they loved me and how much they appreciated my taking care of Dennis. I told them, "I only do it because I love him so much. It's not easy watching all this happen to him and not be able to do anything but what I'm doing." How can you not love a family that treats you like that, right?
The trip home was pretty uneventful, though the airline changed our seats when they saw that Dennis needed a wheelchair. We ended up in the first row of seats beyond first class, which actually pissed me off a bit, as it meant that there was nowhere in front of us to store our extra bag (like we always do). I had to put everything in the overhead bin, but before I could do that, I had to dig out my book, water, etc. because I couldn't keep it in front of me like I always do. Good intentions, but they could have asked.
A trip to Los Angeles
After returning from our trip to Hawaii in May, the pool season's playoffs started. We may or may not have won a match, I don't really remember at the moment. I do remember that during the West Coast Challenge qualifying tournaments, I did win the Rising Star Tournament, which sent me to LA for the WCC. I convinced Dennis to come along with me, just to get out of the house for a few days. I took July 8 & 9 off as vacation from the office, and we drove to Simi Valley in southern California, where the tournament was going to be held. A friend of ours, Thom Moyer, rode along with us as he was playing in the tournament as well and didn't have a ride. It was a fun and memorable weekend, especially for Dennis. Just about everyone at the WCC knows me and a lot of the people also know Dennis. Everyone kept coming up to him all weekend long, telling him how much they enjoyed seeing him at one of the out of town WCCs. So when all was said and done, he was very glad I had convinced him to tag along (and watch me lose my two matches...oh well).
Sunday, March 13, 2011
With a little help from an angel
Due to confidentiality reasons, I cannot reveal who our angel was that helped us achieve a dream—a trip to Hawaii while Dennis was still able to get around, albeit with a cane and going slowly. Our angel arranged our airfare and hotel to be "gratis" and all we had to do was take spending money and our credit cards. Dennis and I have been going to Waikiki since the late 1980s, with a couple of trips to Kauai thrown in for special occasions. Since the late 1990s we've been staying at a 15-room hotel that caters to the gay community; it's called "Cabana at Waikiki" and is located about one and one-half blocks from the beach. The section of the beach that we've always gone to is a bit farther down the walkway; if you were to measure the distance from our hotel to that section of the beach, I'd guess one-quarter mile. Dennis was a real trooper as we walked to the beach 6 of the 7 days we were there. If he'd get tired along the way, he'd say, "Bench coming up." We'd stop until he regained his breath and strength and continued. We walked quite a bit while we were there and Dennis was glad to get home so he wouldn't have to walk so much.
The trip itself was perfect. We had a wonderful time; Dennis was thoroughly enjoying himself. A former co-worker who is more of a friend was attending the University of Hawaii and we connected with her while there. Purnima borrowed her mother's car and drove to our hotel. We had a short visit at the hotel room, shared a joint, then went out to dinner. We ate at a Chinese restaurant that she knew about; it was great catching up with each other and what was going on in our lives. She had been back in India for the previous 6 years and was getting more schooling at UH. After dinner, she drove us around downtown Honolulu, their Chinatown section, past the palace (which is lit up at night), then back to our hotel. We've been keeping up with each other through Facebook.
The next night after her visit, we celebrated our 30th anniversary a couple months early (that's why we were on the trip) by going out to dinner at the main restaurant at the Royal Hawaiian Hotel, the famous "Pink Palace"—due to its pink stucco facade. When we had eaten at the restaurant on our 25th anniversary, the entire decor was pink—tablecloths, napkins, the salt and pepper shakers, the china, candles on the table—you name it, it was pink. This time, the restaurant had undergone a renovation—the "pink" was gone. The interior was now cream colored with a wall of windows overlooking a covered patio area, which in turn had 5 or 6 individually-draped cabanas. When I had made our dinner reservation a few days previously, I had mentioned to the man at the front desk that we had enjoyed our dinner on our 25th and we were back for our 30th. While I wasn't expecting anything special, I was, at a minimum, hoping for a nice table. He said he'd mark the reservation (I had also perceived that he was gay and figured our respective "gaydars" were working). I was quite surprised when we arrived.
We got to the restaurant about 5:45pm for our 6pm reservation. We had taken a taxi as the walk would have been too much for Dennis to endure, that's why we were a bit early. We found a couple of large rocking chairs under a covered veranda area and waited a few minutes. Upon approaching the desk and giving my name, the hostess looked up, smiled and said, "Happy anniversary, boys! 30 years? Really?"
We both smiled and responded, "That's right. We were also here on our 25th."
"Well, welcome back. I'm sure you're going to enjoy our new menu. We have some very exciting items. Please follow me this way," she said, turning and walking towards the outdoor patio area. As we crossed through the doorway, she looked over her shoulder, smiled and said, "We usually charge $150 for a cabana table, but we are waiving that tonight for your anniversary."
"Why, thank you so much," I gasped. "That is so kind of you and the restaurant."
As we were being seated, she flipped over a card that had been on the table. It read "Happy Anniversary."
I asked her if she could take a photo of us, as I had my camera with me. She did (the photo came out beautifully). The entire evening was just one treat after the other. They really treated us royally. It was a wonderful way to spend our last night in Waikiki. And all thanks to our special angel.
I would be remiss to also mention this was the first time Dennis had used the wheelchair services provided by the airlines and got addicted to it very quickly. He loved being pushed through the airport, being pushed in front of everyone else in line. And of course, I got to enjoy the benefit of that as well.
After the Diagnosis
Needless to say, the diagnosis stunned us. I knew something was up, but never suspected that was what we were going to hear. We had our first ALS Clinic appointment in September 2009, which mostly consisted of filling out paperwork and meeting all the doctors that would be assigned to the case. Our first "real" appointment came later, in October. It was referred to as a "clinic appointment" in which you meet with all your doctors—the social worker, the speech pathologist, the physical therapist, the nutritional nurse, the representative from Muscular Dystrophy, and the regular ALS doctor (who turned out to be the director of the clinic)—at least, I think that was all. Since I'm writing this in March 2011, it's been a year and a half ago already; kind of hard to remember everything. After this first clinic appointment, he was subjected to many other tests over the next couple of months.
At our January 2010 appointment, we were told the news we didn't want to hear—Dennis did indeed have ALS. Dr. Lomen-Hoerth expressed that it was "slowly progressing" and that they would monitor him and schedule quarterly appointments. She felt confident at that time to pursue this course of action because his condition had only affected his lower left leg, though he did have signs of progression which included excessive muscle twitching, mostly in his upper left leg. She said each patient is affected differently; she had had patients who lived many years and other who had expired very quickly.
Leaving the clinic, I was devastated. Dennis always held his emotions and what he was really thinking inside, rarely expressing them verbally. We both had to come to the realization that we could not deny this any longer. The experts had confirmed it. We endured a mostly silent ride home with the music being the only sound in the car.
The next month was spent in mostly quiet contemplation, with both of us ignoring the "elephant in the room" as the old saying goes. While I have always understood what it means, when you're living it, it's entirely different. With all the shitty news, little did we know that an angel would help us fulfill a dream.
At our January 2010 appointment, we were told the news we didn't want to hear—Dennis did indeed have ALS. Dr. Lomen-Hoerth expressed that it was "slowly progressing" and that they would monitor him and schedule quarterly appointments. She felt confident at that time to pursue this course of action because his condition had only affected his lower left leg, though he did have signs of progression which included excessive muscle twitching, mostly in his upper left leg. She said each patient is affected differently; she had had patients who lived many years and other who had expired very quickly.
Leaving the clinic, I was devastated. Dennis always held his emotions and what he was really thinking inside, rarely expressing them verbally. We both had to come to the realization that we could not deny this any longer. The experts had confirmed it. We endured a mostly silent ride home with the music being the only sound in the car.
The next month was spent in mostly quiet contemplation, with both of us ignoring the "elephant in the room" as the old saying goes. While I have always understood what it means, when you're living it, it's entirely different. With all the shitty news, little did we know that an angel would help us fulfill a dream.
The diagnosis
August 25, 2009—and as corny and cliché as this sounds—was the day that irrevocably changed my life.
The doctor’s appointment had originally been scheduled for early July but had been postponed. I had had a feeling that what Dr. White was going to tell us was serious, as he had asked Dennis “to bring your partner with you to this appointment.” While we didn’t know it at the time, neither of us was prepared to hear the news that Dr. White was going to be giving.
The doctor’s appointment had originally been scheduled for early July but had been postponed. I had had a feeling that what Dr. White was going to tell us was serious, as he had asked Dennis “to bring your partner with you to this appointment.” While we didn’t know it at the time, neither of us was prepared to hear the news that Dr. White was going to be giving.
The events leading up to our appointment with Dr. White had actually started back in April 2007. Dennis had walked down to our neighborhood’s shopping district to pick up a prescription for me at Walgreen’s. He had also stopped at the fish market to purchase salmon for dinner that night. It was a sunny, mild day and Dennis was enjoying the warmth of the sun on his face as he walked around the neighborhood.
As it usually does, the grand mal seizure gave no warning of its approach. It struck quickly and Dennis fell to the sidewalk, unconscious. His nose smashed into the concrete, the force of the sidewalk’s hardness knocked off his glasses as his nose compressed into the cement. As his face scraped along the concrete, his upper denture broke in half and pushed through his mouth to the sidewalk, landing in two pieces a foot away from his head. The impact left a bleeding gash along his left upper lip.
To this day, the Good Samaritan who phoned for an ambulance has not been identified. As Dennis regained consciousness and his eyes fluttered open, confusion gripped him. “What happened? Where am I?” he mumbled.
“You’re in an ambulance. We’re taking you to the emergency room at San Francisco General,” stated the EMT. He continued, “You’ve had a seizure. We need to get you examined to see what damage has been done. At the moment, it appears you broke your upper denture and you’ve got a split upper lip as well. Your nose doesn’t look so hot either. Just stay calm, close your eyes and we’ll be there before you know it.”
“Who called you? Did you talk to anyone when you picked me up?” Dennis asked, moving his head as if trying to clear the cobwebs and rising on his elbows.
“We don’t know, sir. We got your location from our dispatcher. No one was with you when we arrived.”
Slumping back into the stretcher, Dennis closed his eyes. “I sure would like to thank whoever phoned it in. I could still be lying on the ground,” he whispered.
“Just be thankful for whoever it was, sir. While your injuries don’t look life threatening, you do have numerous cuts and scrapes on your hands and face, along with your split lip. Just lie there and rest and everything will be fine.”
He did as he was told, though it was almost impossible to block out the sound of the siren. He couldn’t exactly rest with that thing blaring away. The siren stopped as they pulled into the ER area of the hospital. The back doors of the ambulance flew open and two large hospital personnel grabbed the stretcher and lowered it to the pavement. The larger of the two men asked, “What’ve we got here, guys?”
“It looks like he had a grand mal seizure, broke a denture, split his lip, his nose may or may not be broken. He landed face-first on a sidewalk, so he’s lucky he’s not more damaged,” replied the EMT. “His vitals are okay.”
“Okay, we’ll take care of him.” Looking down at Dennis, he asked, “How you doin’?”
“I’ve been better. I need to call Rick and let him know what’s happened. He’ll be worried.”
“One of the nurses will call whoever you want, once we get you situated and examined. Just try to relax.”
*****
Thus started our journey down the road to our appointment with Dr. White. A few months after the seizure, I noticed that Dennis had developed a slight limp, with his left foot noticeably having a "floppiness" to it that had not been there before. One day I asked him, "What's with the limp?"
"I don't know," he replied. "It doesn't hurt, there's no pain so I don't care. Whatever."
I let it slide and didn't say anything more about it until we took a trip back to Michigan to visit our respective families—mine in Traverse City in the northern lower peninsula, and his family around the Detroit metropolitan area. While visiting his sisters, Sandie in particular, started getting on his case about the limp, which had become rather severe from where it had been a short six months previously. I promised her that I'd make sure Dennis went to the doctor once we got back home.
He started a series of tests in September 2008 at SF General, continuing into 2009, ultimately leading to our appointment with Dr. White on August 25, 2009. As we were waiting in Dr. White's office, I was starting to get a bit nervous. I was thinking it had to be something serious or he wouldn't have told Dennis to make sure and bring me with him.
The door opened and Dr. White came into the room. After greeting us and engaging in some small talk, as it was the first time he and I had met, he ran Dennis through a few tests.
"As you know, Mr. Healy," Dr. White stated, "We've been running numerous tests on you the past few months trying to figure out what's happening with your body. After ruling out many things, I've come to the conclusion that you have ALS, commonly called Lou Gehrig's Disease. Are you familiar with this disease?"
Dennis shook his head no. I answered, "I'm familiar with what it is, doctor."
"Then you're probably aware that we don't know what causes ALS and there's no cure. I'm sorry to have to tell you this, but it is a fatal disease. In order to confirm this diagnosis, though, I'm going to refer you to the ALS Clinic at UCSF. They will probably run some of the same tests I've already done, but they will also do more to make sure I'm correct. We don't like giving this diagnosis, and want to be very sure before we do. Someone from the clinic will contact you with an appointment date. And once again, I'm sorry I have to give you this news, but you will be getting the best possible care at the ALS Clinic."
Saturday, March 12, 2011
The Early Years
In case you've accidentally stumbled across this blog, let me introduce myself: Rick Bradford of San Francisco. Dennis Healy, my partner of the last 30 years, passed away Christmas Eve 2010. I've had friends suggest I start a blog, so this is my first attempt at having a go at it. I'll try to write chronologically as much as possible, but when looking back over more than 30 years, it's easy to mix up what we did on one trip versus what we did on another. We went to Hawaii about ten times if I count correctly, and about the only thing I can recall doing without mixing up when we did it is the amount of sex we had was always over the top whenever we were there. That was a very pleasant constant that could be counted on—each day, every day...mmm good.
Dennis and I met in October 1979 in Sterling Heights, Michigan (a suburb of Detroit). We worked for Central Transport, an over-the-road trucking company. I was in the Rate Dept. at the General Office; Dennis worked at the Dearborn terminal, but got transferred to Highway Dispatch, across the hall from the Rate Dept. We met shortly thereafter; I invited him to my Christmas party, he invited me to his apartment for a lasagna dinner (on New Year's Eve 1979). After his divorce became final, he could no longer afford his apartment, so I rented him the upstairs of my home in Warren (another suburb). We got to know each other during 1980 and became partners September 1, 1980.
We moved to San Francisco in March 1983, arriving on Sunday morning, the 20th. By the end of the first week, we had secured our first apartment, on Ashbury at Hayes in the Haight/Ashbury District. We shared that space with a friend from Detroit who had come to town before us. After about 15 months, we moved to an apartment of our own on Waller Street, one block back from Haight/Ashbury. When the rent got too high, we moved to Grove Street, but the area was too noisy and we stumbled across a great apartment at Hayes & Masonic. We stayed there for 10 years.
During this time, Dennis went through colon cancer (1994/95), but survived the surgery and removal of two-thirds of his colon. Also during this time, a friend of ours was dying from AIDS and I was his power of attorney. After his death, I received just under $50,000, which allowed us to buy our house that I still reside in.
That's a recap of our life. I'll start filling in more and try to keep this going. I'm still grieving his death, but can see the signs of my healing. As Elisabeth Kubler-Ross (the famous doctor who coined the phrase "Five Stages of Death") says in her book "On Grief and Grieving" - you never get over the loss, you learn to live with it. That's how I feel at the moment and will try to capture my feelings as I go through the grieving process.
If I end up with any followers, I hope you enjoy my stories as they unfold.
Rick Bradford
Dennis and I met in October 1979 in Sterling Heights, Michigan (a suburb of Detroit). We worked for Central Transport, an over-the-road trucking company. I was in the Rate Dept. at the General Office; Dennis worked at the Dearborn terminal, but got transferred to Highway Dispatch, across the hall from the Rate Dept. We met shortly thereafter; I invited him to my Christmas party, he invited me to his apartment for a lasagna dinner (on New Year's Eve 1979). After his divorce became final, he could no longer afford his apartment, so I rented him the upstairs of my home in Warren (another suburb). We got to know each other during 1980 and became partners September 1, 1980.
We moved to San Francisco in March 1983, arriving on Sunday morning, the 20th. By the end of the first week, we had secured our first apartment, on Ashbury at Hayes in the Haight/Ashbury District. We shared that space with a friend from Detroit who had come to town before us. After about 15 months, we moved to an apartment of our own on Waller Street, one block back from Haight/Ashbury. When the rent got too high, we moved to Grove Street, but the area was too noisy and we stumbled across a great apartment at Hayes & Masonic. We stayed there for 10 years.
During this time, Dennis went through colon cancer (1994/95), but survived the surgery and removal of two-thirds of his colon. Also during this time, a friend of ours was dying from AIDS and I was his power of attorney. After his death, I received just under $50,000, which allowed us to buy our house that I still reside in.
That's a recap of our life. I'll start filling in more and try to keep this going. I'm still grieving his death, but can see the signs of my healing. As Elisabeth Kubler-Ross (the famous doctor who coined the phrase "Five Stages of Death") says in her book "On Grief and Grieving" - you never get over the loss, you learn to live with it. That's how I feel at the moment and will try to capture my feelings as I go through the grieving process.
If I end up with any followers, I hope you enjoy my stories as they unfold.
Rick Bradford
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