Dad in the Shadows, and Grandma's Pending Funeral

When I was over at mom and dad's on Wednesday evening, dad had me searching for a certain movie that he wanted me to watch with him. I had pulled all the DVDs and a pile of books out of the book case in my feeble attempt to find it. As I was sifting through DVDs and VHS the phone rang, it was the nursing home. They needed to speak to mom, but she had already left to go to church. I sat back down to my losing attempt at finding this movie and speculated with dad what that phone call could mean. We both were in agreeance that grandma had probably passed. A few minutes later I heard mom drive up, so I quickly put everything back where it belonged the best I could. Dad and I sort of both held our breaths waiting for mom to come in the room, when she did her face was twisted with grief and all she could say was "mama died." I went over to her and gave her a hug and held onto her for a minute and told her how sorry I was. I think at the moment we all sort of shifted from dad to mom. What we didn't realize was that dad was getting a front seat view of how his passing might look.

Grandma Mary stayed with dad while I drove mom down to grandpas. He had spent all day with grandma, so like mom, he had an idea that she might pass soon. When we walked into his house, mom went up to him and told him. You could tell that it was difficult news to hear. His face took on a whole new dimension, one of instant despair. I watched as mom tried to comfort him and decided it was best if I stepped outside for a moment. Before we left I went back in to say goodbye to him and patted him on the back. 87 year old men don't hug men... We proceeded to the nursing home where we found grandma lying in her bed with the sheets pulled up to her neck. She looked like she was sleeping, but her skin was a different color, there was no rosiness to it. Mom stood at the foot of her bed and gazed at her for a few minutes and then we went into the hallway and found a nurse. Hospice hadn't gotten there yet, but they were on the way.

We were taken to a empty room to sit in private. Mom's preacher soon came out to speak with mom. She cried and seemed to be focused on how she had been praying that "they" wouldn't go at the same time... Dad and Grandma... She was just so thankful that dad was still here. They prayed while I slipped out and went back to sit with grandma.

When we got back to the house, my sister Teresa and my niece brittany were there. I said "hey" to them and checked in with dad. He seemed to be lost in all of this. I can tell by his eyes when he's lost or despondent. I tried to imagine what he must have been feeling at that moment. Helpless to do anything... He was upset mainly because he couldn't comfort mom when she needed it most, and I imagine he felt pretty guilty for being on the cusp of leaving her too. I squeezed his knee, and rubbed his leg that was buried beneath soft blue microfiber and smiled at him in a way that told him I loved him. Wonder if that gives him comfort? I know it would me. Anyway, I went back to the back bedroom where mom was sitting thumbing through the phone book trying to find phone numbers. Her hands were shaking terribly, so I sat down beside her and took the book out of her hands and found the numbers for her. She had to call people to tell them about her mom passing. It has to be a hard thing to have to do, I don't look forward to it, but it has to be a release as well. You seem to be announcing that your loved one has gone, like uncorking a champagne bottle, all your emotions spilling out. You cry enough and you tell enough people till you eventually run out of tears and emotional energy. That is what happened to mom, eventually anyway.

My grandmother passed away on January 20th at around 6:45 pm. She had a stroke back in the summer and never recovered from that. She was in the nursing home when she passed. Her 91 year old roommate, Ms. Odessa, sat with her while she struggled to hold on and read Bible verses to her. Ms. Odessa told us that while she read to her, grandma suddenly stopped struggling and she looked at her and she seemed to be at peace and she let go. Grandma and Grandpa had been together for 66 years. He is having a hard time with this.

Things are Changing...

I decided that since my dad sees me all week, I’d let my sisters spend the day on Saturday with him. I stayed at home and worked on my truck. That truck belonged to my dad for 10 years so being with it is like being with dad in a way. He has always taken great care of everything he’s owned, so doing the same thing is very important to me.

Dad's mom came back down to stay on Saturday, and his brother came to visit, so he had a house full. I guess I felt a little lost not being there, but I'm discovering a balance with my time with dad. I don't feel that sense of urgency that I did earlier on. I can’t really explain why that is. I feel like he’s in very capable hands and I feel confident that our relationship is overflowing with love and respect for each other. I guess what I’m saying is this, at first I was afraid that dad would leave during the night and I wouldn’t have felt like I had said or did enough for him. I think the daily visits that have accumulated over a span of a month has given me more than plenty of confidence that I have done everything and said everything. I still go over every day, with the exception of one.

I sat with dad on Sunday morning and had a good visit with him. I like Sundays with dad best of all. It's the only time that I can be by myself with him and it's a day that is very sacred to him and I get to share in that. Sundays have always been an awkward day to me. Most people go to church and get to be with their church families, which must be like having a room full of special friends that you just look forward to seeing each week. Then most people go home or go out to eat lunch with their families and their friends. For me Sundays are reminder of what I don’t get to experience. I know, faith and spirituality is a choice that we all make. Some of us take to it easier than others, some of us live lives that make it near impossible to have the luxury of that choice. Those of us who do live those impossible lives didn’t choose that, who would choose that. Anyway, Sundays with dad gives me the feeling of what Sundays should be like, and at least creates a stronger bond between dad and me.

This particular Sunday morning dad slept a little more than he usually does. I watched him from time to time, his chest rising and falling, comforting me. When dad was awake we talked about my childhood. I’m not sure how the subject came up, but he must have needed to talk about it. I constantly catch myself reassuring him that he was and is a wonderful father. I explained to him that my problems weren’t really from him and mom, but from external experiences. These included being harassed and bullied in elementary and middle school, to struggling with my sexuality at too early of an age and not being able to ask for help with that. It also didn’t help that I at an early age what being gay was and knowing that my parents and my church thought that being a homosexual was an abomination to God. Of course I never told my parents about that or went to them for help because I was too ashamed of who I was and what was happening. If I had of told them that I felt like I was a homosexual at 10 years old, they would have shipped me off to one of those camps where they make you straight. Of course I’ve told my mom and dad my feelings about that now, and they feel just awful that they couldn’t help me with that. I told my dad that as children we don’t understand why our parents do the things they do, or why they react so harshly when they shouldn’t. I told him that when we grow up we come to understand why they did things the way they did. When we, the children, grow up we are able to see the bad things that happened to our parents when they were children, and we see how that affects their ability to love and prevents them from nurturing us with positive mental health. Hopefully when we see that we can forgive and embrace them and reassure them that they did the best that they could. Still that doesn’t take their guilt away for being harsh and angry parents.

When dad and I talk about his past parenting to me and my sisters, he always cries remorsefully. I can’t take that away from him, I’ve tried. I think he feels close to me now because I reflect genuine compassion and acceptance and love upon him and that’s all one can do.

So as the morning progressed dad slept more. It wasn't long before mom was back from church. I said my usual goodbyes to dad and squeezed his knee like I always do, and headed home.

The containers that we construct for ourselves are always at first useful, necessary, and life-giving. Yet they may become binding and constricting and instead of enabling us to live, they choke life off at the source; and then they must be broken. Falling in love can break them, a crisis or a trauma can break them, seeing an incredibly beautiful sunset can break them. Thankfully, life has a way of breaking our containers for us… no matter how painful and awful the breaking has been, there is something out there beyond the boundaries, outside the container, that is calling for our attention, that demands to be validated, and finally requires to be embraced on its own terms, drawing us into its mystery. ---- Michael Dwindell

My sister gave me this quote the other day. I find it to be very true.

The container that I started out in from the early years of my life was created by the experiences of my home. My interactions with my parents, grandparents, peers from school, teachers, and the church all had a hand in helping me create that container. As my childhood wore on that container took on many different thoughts and ideas which bound me tight and kept me still. Each transition I took in life early on made it thicker and heavier. Finally the container broke when I turned 18 and transitioned violently into adulthood. From 18 to 24 the container I created for myself held me fast to my new found thoughts and beliefs and bound me into a viscious cycle of self destruction. It wasn't until another life changing event occurred that it shattered once again. The new container that took its place was one of uncertainty and pain. I had become bound by a container that was made of iron. This particular container sealed me in so harshly that I was gasping for air. No other life events could budge me or even put a crack in this container. I existed within it with learned complacency that I myself soon stopped moving within it. I forgot how to live, forgot how to thrive, forgot how to reach out and embrace loved ones. I stopped living, literally. I lost my job because of that container; I lost my confidence, my self-worth, my dignity, my identity. I was shattered inside this container. It took 14 years, but this particular iron container was finally shattered. It was shattered by my dad’s cancer. I’m like a turtle now, out in the open without my shell, just soft flesh in the sunlight, feeling afraid, and uncertain of what lies ahead. One certainty is clear though, the next container that I am placed in will be one I create from inspired hope.

Staying over with Dad, Morning Rituals

I stayed over last night and I’m still at mom and dad’s as I write this.
Yesterday evening I arrived around 4 so I’m not sure what kind of a day dad had. He slept until after mom and I ate dinner. Mom went to Wednesday night church service, so I got to hang out with dad until she got back. While she was gone, dad and I watched an episode of “Columbo.” When mom got home we watched a western. Then around 10 I emptied dad’s Ileostomy bag and got him ready for bed.

At dinner time mom and I had a good visit with each other. She asked me if I thought dad was getting worse. I didn’t put much thought into my response to her, and I wish I had. I told her “yes, he was getting worse.” I explained to her how he’s having a harder time swallowing and he’s not wanting, or isn’t able, to drink as many Ensures as he had been. It upset her. I apologized later to her, she told me she needed me to be honest and it was ok.

Dad has to set an alarm clock to go off throughout the night every 45 minutes. I heard it go off around 3 and it startled me, so I got up and checked on him. He said he was ok; he was just venting his bag. I went back to bed and slept hard till 5 when my alarm went off. I was having a weird dream and was glad to be woken up. I dreamed I was in a restaurant sitting at this table that was at least 6 or 7 feet tall and I was sitting on bar stools that were equally as tall. One of the fellows that I was with actually died many years ago, so it struck me as odd that he was in my dream. I had a constant fear the whole time that I was going to fall off of those stools and get hurt. So I woke up perplexed. I got up and very quietly prepared for my day, in the dark. I drank my coffee and spent an hour and a half or more in silence off to myself as everyone else slept.

A little after 7 I came into the living room to check on dad. He was awake and listening to the radio, so I came in and sat with him till he was ready for a task that required my help. He told me that he had a weird dream this morning. He dreamed he was lying in a shallow boat and he was fishing in a river. He said he hooked a fish and it pulled really hard. He spent most of his dream fighting it trying to get it in and when the fish finally surfaced it was as long as the boat he was in. It appeared to him to be a Gar or some similar fish. He got tangled up in the line as he tried to get the fish in. He woke up in middle of all of that. It sounds to me like dads dream of lying in a shallow boat was really him lying in his bed, and fishing was really him managing his illness. Reeling in, pulling and fighting and getting tangled up in the line are representations of his daily struggles with surviving his cancer. The fish, especially the shock of its size in comparison to his boat, is the cancer itself. That’s how I see it, if it were to be deciphered by someone who believes in such things. To dad, it was just a pleasurable fishing experience. He said he wasn’t upset by it, but that the dream was entertaining to him.

Around 8 or so I gathered dad’s bathroom sundries and helped him prepare for his morning. We spoke a little. He wanted to talk about sin, so we talked about sin. I didn’t have a lot to say on the subject, only listened and told him that I understood. Dad’s still trying to teach me things. An example, he explained to me last night why the water in the tap is so cold. He asked me why I thought it was that way. I told him because the well is cold. “No” he said, “it’s because the water stands in the pipes under the house and its cold under the house. When you turn on the tap it’s that standing water that is running out. When it warms up then all the standing water is out of the lines. So with that said, you should let your water run a little before you drink it, especially if you have copper pipes. Just so you can flush out the impurities that gather while sitting. So, dad is still teaching me things even now, how cool is that.

Dad is feeling good this morning. I’m feeling good mentally. We’ve been listening to sermons on BBN. We’re just hanging out in the moment, waiting for time to pass. The hospice nurse comes today and hopefully she will bring dad a vented Ileostomy bag. I’m going to help mom change it out and then go home and do what I need to do today. I need to go buy dad a new “touch lamp.” The kind that you can touch and it turns on and off, I broke his original lamp… I tried to fix it, and I did temporarily. He told me not to feel too bad; he broke it too and had to fix it as well…

Problems with Swallowing and Insurance Claim Forms

I came over around 9. Dad was eating his usual 2 pancakes when I arrived. So I sat in the kitchen with mom and had a bowl of oatmeal.

Dad and I spent most of the morning getting things together for his insurance. He's at his best from early morning up until around 2. After that he doesn't function very well and sleeps alot.

Mom and Dad's pastor came over for a while. He had a really good visit with my parents. I just stayed out of the way and let him visit. The acoustics are very good in mom and dad’s house, and I hear everything even though I try not to. It was very interesting hearing the pastor comfort dad, and I really enjoyed listening to him talk. I'm glad my parents have the support of a great church family. It makes a difference in situations like these...

After the pastor left I had to head out and take the insurance claim forms to dad's doctor. I ran a few errands and then headed back over to hang out with dad some more. Mom had to run and get some prescriptions filled, so I got dad all to myself. We didn't talk very much. He's not doing as well as he had been, if you could call the state he's existing in "well". I am not sure what he's feeling and I don't think it's his intentions to be open about his level of discomfort. He lived with his pain daily throughout the summer and none of us knew just how bad it was. So I know he’s got a high pain tolerance.

Dad was relatively quiet. He just kept water in his mouth to help keep it hydrated. There really isn't anything that can be done to change that. He isn't able to drink as much Ensure as he had been. Swallowing is becoming more of an ordeal for him as well. I watched as he tried to take a pain pill, it was hard for him. He has to sit up as best he can in that bed, it is adjustable so that helps. He doesn’t have any stomach muscles, when they operated on him they cut through them and he never developed them back. The cancer of course has deteriorated his muscles in general. So if it weren’t for the trapeze bar above him he wouldn’t be able to move around at all… He then has to get his neck just right. He'll massage his throat for a few minutes, and then he'll try to drink Ensure and water to get his swallowing muscles working. Once he's done all that he tries to take a pain pill. Sometimes it goes down ok, but there are times when it doesn't make it all the way down and it gets stuck. When that occurs, you have to have a pancake and some coffee syrup waiting for him. That helps get it down.

I’m not sure how much longer dad is going to be able to swallow. It seems like each week is a little different for him. Things progress a little further each day. He’s not filling up his Ileostomy bag as often now, he’s drinking less Ensure, and he does not want to eat his morning pancakes. He made a comment to me about not being able to finish his Ensure. I told him that was ok; I’m not going to insist that he do more than he can. I told him that was just part of the process, and that as long as he is able to withstand this, I would be fine. I caught mom insisting that he eat his morning pancakes, “do it for me” she said… She doesn’t realize the guilt she's putting on him, because he knows it hurts her to see him like this. It kills me though; I can’t describe what it feels like to watch someone basically starving. He says he doesn’t feel hunger, and he has no desire for anything. I hope that is true.

Monday...

I didn’t get over to dads until noon. He’s not active at all after the morning time. When I got there Penny, the hospice nurse, was checking in with dad. She went through her usual questions, and checked dad’s wound and his bag. Dad was awake every thirty or so minutes that night because his bag kept inflating and he had to let the air out of it. Penny is going to bring over a vented one on Thursday which will hopefully solve that problem. She asked dad if he was still losing weight. He said the last time he was weighed he was 112. I’m not sure when that was. All of dad’s vital signs are really good. It just amazes me every time. Penny asked dad what his pain was like, and dad said it was still a “2” on the pain scale of 1-10. It’s all in his lower back, and he mentioned that this cancer has been going on for a long time. He said his mistake was that he didn’t call 911 every time he was bent over in pain. He might have been diagnosed a lot sooner and could have gotten treatment, or at least had some hope of surviving.

After Penny left, mom needed to go and check on grandma at the nursing home and she went to visit her brother in the hospital. I spoke with dad for a while, he seemed to be very tired and he just didn’t have the energy to carry on a conversation. His mattress pad had slipped down too far and it was bothering him, so I fixed his bed for him. Once I got him comfortable he had his Ensure and he dozed for a while. When mom got back we watched “Columbo”. I noticed dad was extremely quiet and every time I would glance over at him he had this strained look on his face. Apparently dad’s so dehydrated that within a few minutes of drinking water his mouth goes cotton dry. He was using a wet sponge cu-tip type apparatus in his mouth for a while but he said that caused him to cut back on his water intake. So now he just holds water in his mouth.

Around 4 or so mom came in with the mail, there was a letter from his Insurance Company. I had called the prior week to get a claim form. Dad read it and he put it down and told us that he didn’t think his hospital stay would be covered because of his cancer. I told him not to worry, that I would call and check on it. He was pretty upset by that thought. It took me 10 minutes to get someone on the phone and to get a somewhat encouraging answer for dad. He didn’t mention or seem to worry about it anymore. I told him that I’d be over first thing in the morning so we could work on filling out the claim form together and then I’d run it over to his doctors office pronto.

The only time mom will cook dinner is if someone is with her to eat. She usually eats TV Dinners or soup, which the soup may be healthy, but the rest isn’t. So she cooked a good southern dinner and we sat down and enjoyed a good meal and good conversation. I told her I would come over at noon and stay till 8:30 at least two nights a week just so she’d eat better. No one likes to eat alone…

We watched a movie after I finished cleaning up the kitchen. It was called “Cheaper by the Dozen.” It wasn’t the one that was just made a few years ago. This one was made back in the 40’s and it’s the original version. If you liked the newer one, you need to see the original, it’s much better. I hate to spoil it for anyone, but there was this one scene where the dad dies, and the oldest sister is coming home and she sees her little brother sitting on the stoop steps crying. She asks him what’s wrong and he looks up at her and says “our daddy is dead…” I wasn’t expecting anyone to die in this movie. Not only did I feel awkward but I had to look up to keep from crying myself…

So after the movie I decided it was time to go home. I asked dad if he needed anything and he said he was fine. I patted his leg and squeezed his knee through the soft blanket that was covering him and told him I hoped he had a good night and that I’d see him in the morning. I hugged mom and then left.

Emotionally this was a good day. I don’t feel as devastated or lost at the moment. I have gotten so familiar with how things are with dad that I’m ok most of the time. When dad goes into the next phase of dying, which I imagine will involve more pain, less mobility, less cognitive ability and motor skills, then that will be a whole different emotion for me. I’ll cross that bridge when I get to it.

Sunday Sermons and Dozing Dad

I think of all the times that I go over and sit with dad, Sundays are my favorite. I basically get him all to myself and I get to cook him breakfast. He will only eat pancakes. He says they are the only things that taste good to him. They have to be a certain size and he likes to dip them in coffee and brown sugar. I tried it; it’s actually not too bad. I think that’s the only way he can drink the coffee at this point.

On Sundays I sit and listen to television sermons for two hours. I don’t mind the sermons, they give me insight, and as long as they don’t go on a tangent about Sodom and Gomorrah I’m ok. Sometimes dad will listen to gospel music; I’m not a fan of it. Not because of the content, but because I’m particular about music in general. After dad ate breakfast, he was using his little urinal and dozed off in the middle of using it. He slept for a good hour. He woke up and was startled. When I asked him if he was ok he told me he had fallen asleep while using the urinal. I apologized profusely for being neglectful, I had no idea… When dad falls asleep I try not to disturb him. I usually just sit on the couch and work on my laptop. I'll glance over and watch him for a minute and then go back to whatever it is i'm working on. I noticed that his breathing has begun to change a little. This time, for a few seconds, I didn’t see his chest moving at all and I panicked. I think I’m expecting him to just go to sleep and not wake up. I want him to go that way, and so does he. I want to be there with him at that moment. I don't want it to happen during the night when mom is in the other room sleeping. I can't imagine what it would be like to get up in the morning and go in and check on him and find him dead.

Sunday morning’s dad and I seem to talk more about things. He told me he was worried about mom finding him dead. I told him he shouldn’t worry about those things. He’s so concerned that he’s a burden on us, I couldn’t stress enough how far wrong he was about that. I told him that he didn’t need to worry about what we were feeling or thinking that we are ok. I told him that I was ok. He instructed me that when he died that I was to cry really hard for one day and then go on with my life. I told him that it was ok, that I didn’t know what form my grief would take. I will cry hard for many days. Some days more than others, but it won’t be something that will happen and then be over with.

We watched two westerns. One I stayed awake for, the other I slept through. After 2:00 pm on any given day, if I’m lying on a couch I fall asleep. If I eat pancakes it only perpetuates it further. It doesn’t help either when you’re in a warm sunny room.

Dad takes a pain pill three times a day, and he has a very hard time swallowing. Sometimes it will get stuck in his throat and mom will have to make him a pancake so he can eat that to force it down. Unfortunately it seems that dad’s swallowing reflex is gradually leaving him. It scares me to think what that’s going to mean for him when that finally does happen. We will need to discuss that further with one of the hospice nurses. I called him last night at 7:30 to say goodnight to him and he was about to take his pain medicine. We talked about his problem with swallowing and it upset me a little. He called me back to let me know that he got it down ok. I just hate this so much…

Discomfort, Westerns and Boredom

01.08.10
Friday visit.

Dad seemed to be in a constant state of discomfort today. He wore an expression of discern on his face the whole time because of it. I wish dad wasn’t going through this, but he is. I told him I probably wouldn’t go by on Saturday. I need to give him a break from seeing me. I need a day to catch up on things and I’m hoping one of my sisters will go over and stay for more than just a few hours. I’m betting I’ll end up over there in the evening. I don’t want to experience a day without dad. I’m afraid that if I don’t start letting him go it will be harder on me once he leaves.

I’ve begun to worry about dad getting bored. I know that probably sounds silly, but if I were in his situation I’d be racked with boredom. There really isn’t much on TV worth watching, and that and the radio are his only entertainment staples. I started attaching my laptop to his TV and we watched westerns on Netflix. He likes Columbo and Gunsmoke, so we’re going to do a marathon of that on Sunday. Dad tries to keep his mind clear of bad thoughts and much of what you see on TV is pretty bad. He gets extremely agitated when he sees something that is inappropriate. I’ve noticed that when he’s watching a movie he gets the chance to rest better. The surrounding silence around the movie must be peaceful to him. When he’s just resting in general people have a tendency to just talk and having to listen to conversations just wears him out.

Is it unhealthy for me to call every morning to say good morning to him and then go and stay with him during the day, then before too late in the evening call him and say good night? I feel like I’ve started a routine that he expects, and if I break the routine he’ll notice it. I’ve been doing this for almost a month now, and I’ve noticed that his voice lights up when I call him like that, maybe he needs it. I know I need it. I’m a creature of habit. Routines come easily, but are hard to get out of.

The Hardest Thing Yet

I’ve discovered that being with someone that is dying, at least being with someone on a daily basis and having been blessed with the task of helping someone through dying, is a lot like helping them pack up their household to move away.

I’ve seen dad every day, give or take one or two, since the end of November. I’ve seen him slowly melt away, but didn’t realize it. I was given the task of getting photos together a while back to create a collage for dad’s funeral; he’s having a closed casket. As I was looking through the photos, I came across one of him from last Christmas. It was a portrait of him and mom that they had made at their church. I’ve never thought of dad as being healthy in the weight department. He’s always been 6’1 and 160 lbs. As I looked at him in the photo I noticed how golden his skin was and full his face was. I had gotten so use to seeing dad emaciated and pale that it seemed normal to me. He seemed to look the same as he did when I was fishing with him back in April of this year. So I could imagine how shocked people must be to see him when they haven’t seen him in years.

In the weeks that dad has been confined to his hospital bed I’ve always seen him in his pajamas, or a t-shirt. I’ve seen his bare back and arms and legs enough to have mental images of them, but it was something that didn’t shock me. Sure I had a very difficult time seeing dad for the first time like that, but I was able to make peace with it. I knew that his cancer was eating his calories, his nourishment. I knew that he was going to waste away. I knew, but I didn’t know what that would look like. I know now.

On Wednesday morning I helped dad with his morning routine. I emptied his Ileostomy bag, and helped him take a sponge bath. This is how the sponge bath occurred. I sat in the chair beside his bed, watching as his long hands reached into the basin to grasp and wring out a wash cloth. I watched as he slowly, clumsily, grasped the bar of soap and enfolded it in the cloth to suds up a bit. I sat beside him and held my breath while he washed his arms, and then his chest. I watched as he dipped the cloth back in the hot water and listened to the sound of the water being squeezed out of it. I tried not to gasp as dad drew his long spindly legs up to him and gently washed each one. I watched him and tried to block the images out of my head. Then dad called out to me and asked me to wash his back, so I stood up and took the cloth from his hand. He rolls over and I take in a deep breath, silently holding it in, and I dip the cloth in the warm water and then I gently apply it to his shoulders. His shoulders that look alien to me because they’re nothing more than two huge twin shields of bone that protrude out from his back. I wash them gently, then I cup his spine in my hand and I run the warm cloth gently down the length of it. I speak to him softly as I do this; I tell him I am honored to do this for him. He tells me that he is glad that I am here for him. I am not feeling anything; I am numb to all of this for the moment. I dip the cloth back in the warm water and squeeze it out. I gently wash his side, which is nothing more than his ribs protruding up and through the skin. I lovingly run the warm cloth along each one and then I dry him off and he rolls over and I do the same to the other side. Once I am done bathing him he asked me to rub a special cream on his back and pelvic area. It’s to help prevent bed sores. I didn’t hesitate and hastily made my way to get it. Dad had me turn the gas heater that is in the wall beside his bed on and close the door. It got warm fast. As dad rolled back over to his side he pulled his underwear down for me and I wasn’t prepared for what I saw. There weren’t two globes there anymore. His posterior was gone. It was nothing more than the end of a spine protruding downward. I didn’t realize what I was looking at; I still can’t bend my mind around it. Dad said mom usually wears gloves when she does this, I told him I didn’t want to wear gloves. I dipped my hand in the cream and I touched him and rubbed it in with all the love and compassion that was in my being. I gently massaged him and worked my way up over his ribs, his spine, and his shoulder blades. Even when I was through with the cream I still rubbed him. I wanted him to feel every ounce of love that I had to offer him. After a while he rolled back over onto his back and I helped him put on his pajamas. Once he was in a comfortable position, I placed a towel on his chest and I shaved him. It was difficult because his face has developed so many sharp angles, and his skin pits beneath the bones. I then gave him a haircut.
After I had finished with dad and brought him his first Ensure of the day, I went to gather my things up. It was almost noon at this point and I needed to go home. I had spent the night, so I was tired and my dogs needed me.

I still hadn’t had the full reaction to seeing my dad the way I had that morning. I was just so mentally tired that when I got home I bathed the dogs and then went to bed. I slept till 4:00 pm. When I woke up the emotional shock of seeing dad in the way that I saw him hit me. It felt like someone punched me in the stomach with all their might. I curled up in a fetal position and wept.
The next day I was ok.

I’ve discovered that I have changed through all of this. I’m a more serious person. I’m not as obsessed over every single thing that crosses my path anymore. I have slowed down; I do things with more thought and am more methodical. I have my ups and downs with this process. I often feel guilty for being so accepting of dad’s dying. I often feel like people view me as callous or indifferent because I don’t cry all the time, or at least cry when I talk to them about dad. I worry that people who don’t know me will think that because of my lack of emotion I wasn’t close to my dad. I worry that I am not handling things in a healthy way. I worry that I’m in some small way not seeing the full picture, even though I believe that I am. I am scared to think what my life will mean without dad in it. I am afraid that after dad dies, mom will not be the same mom I’ve known for the past 38 years. I’m worried that the family will disperse like seeds in the wind. Dad was the patriarch. I have found that in the entirety of my life I’ve been obsessed and curious about death. I’ve been the suicidal, dark, twisted lost soul that sang the praises of death through poetry and ramblings. In all my years though, I’ve never had an experience with death. No one I’ve loved has died. I had no image or face to put on death. I had no pain to associate with death.

I told dad that he has given me so much by allowing me to help him through this process. He has single handedly restored my self confidence, and given me a purpose in life. I have learned so much from him up to this point, and I could only hope that when my life draws to a close it is similar to his. I told him the other day that losing him will help me greatly when it comes time to losing mom. I explained to him that he has been able to talk me through difficult things and he’s explained things to me in a way that no one else could. Up to this point he has given me knowledge and experience to make it easier for mom, or anyone else in my life when it comes their time.

I’m still hanging on tight to dad and I’m afraid I’m holding on too tightly…

Grumpy Dad and Family Therapy

When I arrived this morning mom was on her way out to go to an appointment with grandma's hospice care. She informed me, as she rushed past me, that a hospice nurse was coming out within the hour. After mom left, the nurse came pretty quickly. She checked dad’s vitals and everything looked good. She asked how his pain was on a scale of 1-10, he answered "2". After she was through I walked her out and we had a great conversation. She asked me how I was doing; I told her I was fine. I had gotten through the worst of it up to this point. I decided to tell her about my personal experience with my own chronic illness and how that helped me relate to dad now. It was a good conversation. I like her alot. After she left, dad decided he wanted his Ileostomy bag changed. He usually has his Ileostomy bag completely removed and changed once a week. I've done it a few times and it's not my favorite thing to do. Not because it makes me uncomfortable, it doesn't, it's because dad likes to supervise. When he does that he in avertedly brings my inner child to the surface.

I’ve always tried to maintain a relationship with my dad that was basically adult to adult, not parent to child. I have struggled to deal with pooled emotion that would come up when dad’s voice would take on a certain tone, or he’d use certain phrases that were always hurtful to me as a child. It’s sort of like how a dog is hit on his head or snout to be corrected. After a while every time you bring your hand up to pet the dog he flinches in expectation that you’re going to hit him. That’s sort of like pooled emotion, its things that make you flinch.

Just in case you don't know what an Ileostomy is I'll tell you. An Ileostomy is a surgical opening constructed by bringing the end or loop of small intestine (the ileum) out onto the surface of the skin. Intestinal waste passes out of the Ileostomy and is collected in an external pouching system stuck to the skin. Ileostomy are usually sited above the groin on the right hand side of the abdomen ---- Wikipedia

So anyway there is a special disc that fits around the stoma and is glued down to your abdomen around the stoma. The disc has a circular raised lip that is designed for a pouch to snap securely onto. Then there's a clip at the end of the pouch that you unhook to drain the contents when it's needed. Sounds simple? It's not... You have to make sure that it's put on properly or it will leak. It's really not a good thing when it leaks, I'll leave it at that... Anyway we've learned by trial and error that it's best for dad to not drink Ensure before doing this change out. So the procedure of changing the bag has to be very accurate and very fast. First you gather all of the tools you need. A basin of warm water, a dye free, fragrant free all natural bar of soap, three to four wash cloths, a hair dryer, a pair of surgical scissors, surgical tape and an Ileostomy kit. Don't forget a towel in case of an accident. So once all that is together and dad is ready, you hand him a warm wet wash cloth. I’m not sure how it is with other people, but with dad you have to listen to him telling you what to do for at least 10 minutes before proceeding. Once you are ready you gently peel back the surgical tape that is on top of the attached disc. Usually it's adhered to the skin pretty bad, so you have to be very gentle. Once all of that is off you must peel the surgical tape that is attached to the disc starting from top to bottom. You want to be gentle, but at the same time you want to pull it down and over the stoma and keep whatever contents that is in the pouch, in the pouch. Then dad places his warm wash cloth over his stoma just in case it decides to "spew" and trust me, it does... Once you've got surgical gloves on you have to take a wash cloth and wet it and put some soap on it. You then proceed to clean around the stoma and remove all the glue residue and whatever else might be around it. Then you blow dry the skin to make sure it's dry. Once that is done you must have the disc ready by measuring the stoma and cutting the inner ring of the disc to fit around it. Once you've done that you have to put special glue around the ring and allow it to set a bit. Then you put the disc over the stoma, glue side down, and you smooth out the attached surgical tape onto the skin. You have to make sure it's on properly. Then you need to be fast about getting the pouch onto the disc by making sure the two raised rings meet and snap together. If the stoma spews before you get it together, well, you have to start all over... So once that's all on you put additional surgical tape around the disc base for added protection. That's it, sounds simple doesn't it. Well, it would be, but when dad is grumpy it's very difficult. I'd be grumpy too, so I understand. It does become quite exasperating though and it is very stressful.

The hospice worker brought out a baby monitor so mom can go from sleeping on the couch at night, to sleeping in her own bed. I set it up and dad tried it out. It has an emergency button on it and I’m sure the first time mom hears it go off it will scare her to death. This is the grumpy part... Dad wanted to put it somewhere other than his table, but I told him he couldn’t because it has an emergency button you have to push. He kept telling me to put it here or there and I again insisted he couldn't. Finally after a few minutes of trying to put it somewhere he wanted it he suddenly, in a very irritated voice, told me to put it back on the table because it has an emergency button on it... At this point I decided when mom got back I was going to go run errands for someone...

Later in the day a hospice counselor came by. Her name was Meredith. She sat down with us and very candidly talked about dad's dying with us. I was really glad that the subject was being broached. She wanted to know how mom was doing. Mom immediately started wiping tears. Meredith told mom that it was ok to cry, that is just what you do when you love someone. So don’t be ashamed to cry, wear the tears as you would a badge of honor. She asked her what her biggest fear was. Mom answered being alone. She married dad when she was 19 and he was 20. 44 years of marriage is a long time to be with someone and then suddenly be faced with the prospect of losing them. Meredith gave mom some ideas on how to best handle that. She told her to picture herself after dad was gone, alone in the house. She told her to let herself feel her emotions a little at a time, and eventually she’d see that it will be ok. She assured mom that she had a support system all around her. Mom is also worried about the house falling into disrepair. Dad always took care of things and mom just relied upon that. Meredith told her that if that happened she could call a plumber, or an electrician, or her son to help her find the right repair man. It was suggested that dad make a list of businesses that he used in the past with phone numbers. Mom also worried that I was going to burn out from coming over so much. I assured her that I wouldn’t, and if I did I’d take a break to recoup.

Meredith then asked me some questions. I told her I was doing fine. I told her that I was ok with dad dying, that I had made my peace with it. She asked me why I came over so much. I told her that at first it was an obsessive thing that I just had to do. I didn’t realize at the time that I was avoiding dealing with dad’s illness by being with him all the time. It wasn’t till I missed that one day, Christmas Eve, that I fell apart and was forced to grieve. She wondered if I was there more for mom than for dad. I told her I was concerned that no one, meaning my sisters, would give mom the care she needed. I felt like I had to be there for her for that reason. I thought about it afterwards and hoped it didn’t sound as bad to them as it does to me. I just have a strong sense of duty and loyalty to my parents, which is why I have taken charge of things in my own way. She asked how my two sisters were taking things. One is avoiding coming over for fear of having to grieve, and the other doesn’t come over for reason unknown to me. I know they come by once and a while and at least one of them calls once a week or so… Meredith told mom that she needed to call them and tell them that they need to come over on a certain day so she could go out to check on grandma in the nursing home, or her brother who is in the hospital, or grandpa who is at home alone. She asked me how I felt about that. I didn’t tell her I was mad at them for allowing me to shoulder all of this on my own. I didn’t tell her how much resentment I was feeling, or how I didn’t really seem to care for either one of them at the moment. I just told her it was a great idea, they needed to be here.

Meredith asked dad how he felt about things. He said he was ok. He wasn’t in a lot of pain. He said he was at peace. Meredith asked him about his childhood, she wanted to find out how he was taught to grieve. He told her the story of his grandpa who raised him. Dad told her how his grandfather had gotten sick and he pulled dad aside and told him that he was leaving and that once he was gone, well that was it, he was gone. There was no need to grieve over him. So dad said that he went to the woods that day and cried to himself and then he didn’t grieve anymore. I don’t know how old he was, but I know he was young. Every time he talks about his grandfather now he cries. There were a few other things talked about, but I don’t have total recall unfortunately, so I’m just going to leave this part of things and move on. It just ended up being a good hour long check in.

After Meredith left, mom and dad and I all felt rejuvenated. I told dad that I really enjoyed talking about things, and I hoped that we could do this weekly to see where each other was with things.

I decided that I needed to go home. I had been there almost 7 hours and I was tired. So like I always do when saying goodbye to dad, I squeezed his knee and told him I loved him and that I’d see him tomorrow. Of course I knew when I got home I’d end up calling him around 7:30, like I always do, to say good night to him.

So it was a good day.

Dad's Birthday

Dad throughout the years. The earliest photo is of him and his father, Lester Starling.

Today is dad's birthday, 01.06.10. He's 65 years old. He has successfully made it through all the important holidays.

Time is ticking by fast, faster than it usually does and dad is always a day or two ahead, he's lost track of time. I stayed over last night because mom has to go to the nursing home first thing in the morning to take care of hospice for grandma. She needed me to help get dad started on his day. I'm not sure what that entails, but I've got a good idea. We had a good evening, not sure if he did. He tries to curl up in a fetal position when he's in pain, but he has a hard time doing that because of his ileostomy bag. He stayed in that position, the best he could, all evening and through the night. We watched a John Wayne movie that was made in 1930. Dad loves westerns, I don't... I'm watching a lot of westerns...

It's 7:00 am now and I've been up since 5:30 am. I set up my coffee maker in the office and had it all ready to go so I wouldn't disturb anyone. Since dad has such a keen sense of smell these days I had to put a towel against the bottom of the door to prevent the aroma of coffee from getting to him. Hope it worked... It felt really weird sleeping in the house that I grew up in. I felt a magnetic pull to go home all night last night, and didn't sleep well because of it.

Last night before I went to bed, I emptied out dads ileostomy bag and made sure he didn't need me anymore. He told me that he was with his mom 65 years ago today, but he can't remember it. I was puzzled as to what he meant, and a little concerned that he might be losing his memory or slipping out of his mind... What he was telling me was that he was born 65 years ago. He said he was born around 2 a.m and it was the coldest night that they had had in years. It was frigid early this a.m so it was much like the early morning he was born. I told him I'd wish him happy birthday in the morning, since technically he wasn't born yet. He responded with "I was still present, even though I wasn't born." That makes sense, he was here, just waiting to escape the womb...

Dad has problems with swallowing and his mouth stays dry all the time. He has these cu tip type sponges that he keeps wet and in his mouth, so he doesn't say much anymore because of that. It's hard to guage what he's feeling, but he is in a little more pain now than before. He was a grumpy fellow yesterday, so I kept quiet around him. Dad gets irritated easily and he still has the ability to raise his weak voice to scolding level...

Sitting with Dad

Sitting with someone who is dying is a hard thing to do. You don't always know what to say, or how to act. I had that problem for a while. I'd go over and I'd sit for a few minutes, then get up and wander to the next room and then go back and sit back down. It seemed like I didn't say much to dad. I couldn't really think of the words to say. Then as time went by, and I was with him longer, I discovered that even though he is dying, he's still a whole human being. He was still dad, just in a different situation. He still had the same interests that he always had. I learned to talk to him about things outside of the situation. I paid attention to his facial reactions to my conversations, and if he seemed distant then I knew he wasn't interested. I learned to let dad steer the conversation. I also learned to touch on things briefly then move on to another topic. Dad has never been one to ramble on anyway, so the way dad handles conversation might be a little different from how someone else in the same situation might feel. I also learned that just sitting with him in silence is just as golden as trying to carry on a conversation. You have to listen more than speak. It's ok to talk about dying to them. It's hard to broach the subject, but it's what's happening to them. I asked dad if it was ok to talk about his cancer and his eminent passing and he was more than willing to talk about it. I asked him if he was in pain, he said he was, but it was centralized in his lower back. I asked him what dying felt like, he said he couldn't really explain it, he felt differently in his body somehow. I was able to ask him if he had spoken with everyone he wanted to speak with, and seen who he wanted to see, and he said he had. It felt good to me to know that, and I wouldn't have known if I hadn't have asked. Dad talks about going to heaven. I honestly believe the way he feels is that he's got his bags packed and he's taken care of everything, like you do when you leave to go on an extended trip, and he's ready to go. Sometimes when he talks about it he cries, but I think it's because he's just so overwhelmed with joy that he's going "home". He speaks of people who he loved in this life that have died, and his voice cracks up a little. I can't feel anything other than happiness for him right now, his enthusiasm for the next life is contagious. I've always gone to dad for guidance before going to anyone else. I was confident that dad would always have the answers that I needed, and for the most part he did. Though this process of drifting towards death dad has been a teacher to me. He has shown me many things and allowed me to participate in the experience of his preparation for it. I want to be able to walk with dad to the gate that is death, and I want to be able to send him off with comfort.

The most important thing I have done with my dad was make sure that my relationship with him was "current". I have been able to clear up a lot of misunderstandings with dad in the past 10 years or so. I was able to confront him about alot of things that happened during my childhood that had remained with me as a painful scar. We've yelled at each other, and we've cried with each other through the years, and it was all good. I had made our relationship "current" and that has made all the difference for me, for us. I was able to have a relationship with my father, a relationship of equals. He is my best friend, and I am thankful that we were able to interact in each others lives as such and not as father/son.

The one thing that I never really had from my dad was hearing him tell me that he was proud of me. While he was in the hospital back in November he had that conversation with me. He told me he was proud of me, but I told him I couldn't imagine why. My life had been totally different than his in so many negative ways. I didn't grow up to be the "man" he had imagined or hoped I'd be. I always felt shameful because of that. Dad listed all the reasons for being proud, which weren't my intentions for him, but he did. It opened my eyes to him. I wasn't invisible to him like I had always thought I was. He doesn't feel ashamed of me like I thought he might. Having a gay son wasn't as big of a burden on him as I made it out to be.

Learning How to Deal

When it came out that dad was dying from cancer on December 9th I had a hard time being in the same room with him without getting physically upset. I felt a great deal of despair and anguish. It was hard for me to talk to him and keep my composure for any length of time. I felt guilty for being like that. Dad doesn't need to worry about other peoples emotional well being. I kept telling him, when I would go through an episode in front of him, that I was only human, that I was sorry and this is what happens when you love someone. He just kept telling me to be strong. After some practice I learned how to turn my emotions off. I soon discovered there were consequences to that though. Whenever I would be away from dad my emotions would turn back on and it would be like a pot boiling over on the stove. I had a hard time regaining composure. I also started experiencing severe anxiety that inevitably lead to passive aggressive behavior towards other people. Of course the anger stage is part of the acceptance of loss. I think that by being around dad everyday and seeing him in his current condition, that has somewhat desensitized me. I am still shocked by things from time to time... You never get use to seeing someone in a severe emaciated state. I have gotten so I can talk about him and be with him without feeling any grief. I worry sometimes that people might misunderstand and think that i'm not effected by this at all. I don't want to come across as cold, but I've gone through the acceptance of dad's eminent passing. I'm ok at the moment with it.

I can't explain what it feels like once you've gotten past the grief part of losing someone. I think it depends upon the person more than anything. For me, I'm at a point where I just have an urgency to do what I can for dad while he's still here. I am driven by the need to be with him all the time, which i would imagine, is taking a toll on my relationship with Mike. Mike understands though, and it probably does a long term relationship good to have some distance in it from time to time. I've also developed a more critical view of my sisters, but I'm trying hard to understand their actions, or lack thereof... I think once dad is gone I'm going to shatter once again, but I've seen my strength and I know I'll be able to put myself back together again.

Mom is having a difficult time with this. She has gone from having the nervous shakes in her hands and the constant red eyes to being a little calmer and less emotional. She has learned how to change dad's ileostomy bag without panicking. If you've ever seen such a thing, they are difficult. Once you get past the aesthetics of it and see it for it's purpose and function, well it's not so bad. She's also learned how to change the sheets on dad's bed with him on it. That actual comes in handy for many situations in life, it's easier to do than it sounds.

I've learned that when sitting with someone who is dying, conversation isn't always a welcomed thing. Something to always remember, when speaking with someone who is in such a situation is to always direct your conversation to that person. Remember they aren't hard of hearing, so there is no reason to speak loudly. Don't ask how they are doing, ask them how they are feeling at the moment. When there are two or more people visiting in the room, don't converse about things outside of the experience, the person dying doesn't want to hear about such things. Don't gossip or be negative about things, and don't whisper to each other. When in a separate room beyond the dying person, but still within earshot, don't laugh and carry on in mindless conversation. These are things that bother my dad, and would probably anyone in the same situation.

The week following December 12th

It was really nice that we were able to spend that special day with dad on the 12th. He was very happy with how things turned out.

Sunday, dad had a steady stream of visitors from his church. He is well loved and he received everyone very gracefully and stoically. Many family members started coming in from out of town to visit. I hadn't seen most of these people in over 20 years. They all seemed to notice that I wasn't the thin fellow I use to be, and they all seemed to comment on that, which really bothers me... I'll have a different neurosis after this is all over...

Monday a hospice facilitator came out and we learned that they could provide dad with a lawyer. I had already made an appointment with one the previous week, but this was much better. After a quick phone call, the lawyer that worked with hospice came out to the house. We met with him and dad discussed his wishes. Dad had hand written his will the past Friday so it was a simple task. So, with great relief, by Tuesday this would be final.

Dad gave me Power of Attorney over his health care. I didn't know about the health care part. With great relief it was made clear that hospice would take the responsibility of "pulling the plug" as it were, I sighed in relief. I was concerned that I was taking all of this away from mom, but she assured me that it was fine. I was genuinely surprised that dad would give me this responsibility. I had never been one to step up to any responsibility in the past. Apparently dad knew I needed this to restore my confidence. I dove right into it and I didn’t seem to second guess myself. I had everything he needed done within a week. Contacted all of his insurance companies, his retirement issuers, called people, and even started helping him with his Ileostomy bag. He had asked me to learn how to do that in case no one was available. When I first watched the nurse take it off and change it out and clean him up I thought I would fall out on the spot. I’ve always had a tendency towards being squeamish. I’ve mastered it now and he likes it when I change it out. He says I have a knack for care giving. He told me I was his right hand man. That didn’t help my attempt at being stoic.

Tuesday, hospice came out to bring dad a hospital bed. It was decided that it would be placed in front of the living room window. That was a good decision because not only could he be a part of everything, but he’d have the best view in the house. The two large windows that are against his bed are the same length as the bed, so he’d have a nice view of the trees and the birds and the morning sun. There were so many people visiting dad when the bed finally came that mom and I were very frustrated with the situation. Dad was tired and we had to get everything out of the room and yet there were at least 12 people standing or sitting in the kitchen. No one seemed to understand that they needed to leave...

A Letter to Dad.

Dad holding me when I was a toddler.

I wanted to give dad something on the 12th at his Christmas day. I struggled with what that would be. I decided to write him a letter, but I knew that in dads condition it couldn't be too wordy and too complicated. So instead of spending a week writing and rewriting and over editing I came up with a short letter that summed it all up very simply. Looking over it now, it reads somewhat childlike. It was a collaboration between my adult self and my 12 year old inner child. It also didn't help that I was a total emotional wreck as I wrote it. I wanted it to read as the present and not past tense. Dad is still with us and as long as he is nothing is past tense.

_____________________________________________


Dad,
You started me out early in life with walks in the woods and fishing trips that always led to discussions about birds and animals and amphibians and fish. You taught me how to fish, from tying knots for hooks, to how to fish for certain fish, and how to cast a line and how to motor and paddle a boat. You taught me how to properly put a cricket on a hook, which is why I will always use crickets when I fish. You taught me about birds. You taught me about how to identify them and I love to talk to you about them so much. You taught me how to take care of my fishing equipment, how to take care of basic car maintenance, how to take care of a lawn mower. You’ve taught me how to deal with people, and you’ve always taught me to love and appreciate people and how to forgive. I do all those things because you showed me how by living the example and I’m glad that I am able to do that. All these things will benefit me for the rest of my life and I have those things only because you love me enough to show me those things. You have made me the happiest and richest man alive. You have given me so much that will give me joy for the rest of my life. You have solved so many problems for me and I was always able to see why you gave me the solutions you did and because of that I am able to solve problems with greater ease now. You have handed me down so much wisdom.
I have discovered that the older I get the more like you I am becoming. I have your sense of humor and I have your seriousness, I have your gentleness and kindness. I even have a voice similar to yours. I know we have always had a little confusion because we share the same name. That use to be a bit frustrating at times for us, but I have grown to cherish that name, only because it’s yours as well.
So as my life continues I look forward to rediscovering your family. I am going to make it a point to get out and visit them more often. I look forward to enjoying all the things you’ve instilled in me.
I love you so much dad, I can’t say that enough. I feel loved by you and I always have and I always will.

Love your Son

Dad's Christmas

On December the 12th, a Saturday, we had our Christmas with dad. I don't remember if we ate or not. I remember we all were in the living room with him. Me, my partner Mike, Teresa and her husband Gary and their daughter Brittany, Debbie and Kevin and their Daughter Tori. I was videoing the event. I didn't do a very good job, my hands were shakey and I didn't realize that the sd card was almost full, so I didn't get all of it... There are no pictures of this day either, which really upsets me. So basically it starts out with the granddaughters, Brittany and Tori, getting their gifts from dad first. Tori opened up hers and it was a necklace and matching earing set, and then Brittany opened hers, and it was the Jewelry Box that played "What a wonderful World" by Louis Armstrong. It wasn't the typical tune, it was the actual song with him singing it. We all were trying to stifle our grief at that point. Then Mike, Kevin and Gary all opened up their gifts. Dad had gotten them collector knife sets. Then Debbie and Teresa opened theirs.

After it was over we all sort of drifted to different parts of the house. We were trying so hard to come to terms with what was happening. Mike and I stayed a long time after everyone left. I didn't want this day to end, and suddenly I couldn't bear to be away from my father...

Dad's Christmas Wishes

On the way home from the Doctors visit that morning, the one where we found out that dad was dying and only had a short time left, we stopped at the post office for some reason or another. I think mom had to mail a letter, or a bill. I was driving the van and dad was sitting in the front seat beside me. I couldn't speak to him without crying. I was so overwhelmed.

When we got home Dad settled into his recliner and called me and mom into the living room. Mom and I were still in shock from what the doctor had just told us a few hours ago. He asked me to go get some personal effects for him. We all three sat in the living room and dad gave us a few things, along with instructions, necessary for carrying out his first wishes. We all three tried so hard to hold it together, but it was an impossibility. The floodgates had been opened, and until all the water ran through them, it would be a while before it would be dry. He instructed us to go out and buy Christmas from him to the family.

For the past couple of years dad would always buy us something useful, but he'd present us with something odd first. An example would be the one Christmas my sisters and I each received a plastic spatula. I assume, like me, they thought "ok, maybe I need a spatula..." Then later in the evening we'd get the actual gift, which was an electric skillet. See, you can’t use a metal spatula on the skillet, it will scratch the Teflon off. So per instructions by dad I had to find three sets of really nice cookware for myself and my two sisters. I had to find a hand towel, because you need to hand towel to wash the pots and dry them immediately so they won’t spot. I also needed to find two sets of jewelry for both of my nieces. I suggested a keepsake jewelry box to the put the jewelry in, which he thought was a good idea. He also wanted me to go out and buy mom a new stove. Mom didn’t want one just yet. I understand now, it was too much for her to handle.

So basically my dad came home from the doctor’s visit with a sense of urgency to take care of things. He didn’t think he’d be here at Christmas time so he wanted to have Christmas on the 12th. I can only imagine what was going through his mind at the time. I know I was being driven by this latest task of getting Christmas together, so I didn’t have time to grieve too much. My mom on the other hand was a basket case.

As we got into the car to drive to Raleigh, she just let it all go. I supported her the best I could. I was overwhelmed myself and had never had to help anyone through a situation like this. My uncle stayed with dad while mom and I were out and about. We ended up going to Crabtree. The first place we went was to Things Remembered. We found a nice silver heart shaped jewelry box. It played “What a Wonderful World” by Louis Armstrong. We both cried when we listened to it in the store. I’m sure the sales clerk wondered what she had gotten herself into. We had them both engraved to say “I will Love you always… Grandpa" Afterwards we went to Belks and found three sets of really nice Emeril Lagasse cookware sets. Dad wanted me to haggle… I don’t haggle, but I did for him. We then found three really nice dish towels. Dad also wanted me to pick up a gift for my two brother-in-laws and Mike. So I found them all three a collectors knife set. After having everything gift wrapped we headed home.

My sisters came over that night and they put up the Christmas tree. I had to call dad’s brothers to tell them the news about dad. It was difficult, but it was a task that dad gave me. He seemed to know that if he kept me busy, he’d keep my mind off of grieving. I did quite a bit of that when I went home at night. I just couldn’t get over this. It was hard.

Wednesday December 9th.

After much concern as to why dad was getting worse since coming home from his stay at the hospital, we took him to his doctor. We find out the truth on this day. Dad already knew, he was protecting us all.

Dr.: Are you tired? Just lie back. Are you eating ok?

Dad: Yeah ok.

Mom: He’s eating. I’m keeping something in his mouth all the time.

Dr. : your arms aren’t as small as they were last time.

Mom: It just worries us that he’s still weak. He’s walking back and forth in the
house every day.

Dr. Well look, let’s be brutally honest with each other, we’ve got cancer we’re dealing with here.

Mom: I know

Dr.: Cancer will wear you out, and the question I’ve got is what is Dr.______ plan?

Mom: That’s something we don’t know.

Dr.: When are you suppose to go back and see Dr. _______?

Mom: We don’t know, did you make an appointment William?

Dr.: Time to make an appointment and go back to see Dr. _______

Dad: If I’ll be able to make it there, If I’ll be able to make it back.

Dr.: Well, see the thing is if you can’t make it back he’s not going to start you on chemotherapy. If we don’t start you on chemotherapy we’re not going to be able to beat back the cancer at all.

(The dr. looks at dad’s incision)

Dr.: oh this looks great. Have ya’ll helped with this or have you tried to stay away from that?

Mom: Oh, I’m helping the nurses

Dr.: Ok, because it looks great, the wound looks good.

Mom: good.

Dr.: Ok, what I’m going to do today is have one of the ladies take the rest of the staples out because you don’t need them. This looks like it’s doing really good. Cough for me… Ok. You’re getting your Ensure and you’re keeping that down?

Dad: yes

Dr.: Ok, alright, um, the cancer is winning. As long as you are losing weight, the cancer is winning.

Mom: yeah

Dr.: I’m not going to lie to you and I’m not going to sugar coat it, if we can’t get weight onto you it’s because the cancer is using your calories more than you are. Ok, it’s sort of like running a car with the air conditioner on and you don’t get as good gas mileage because the air conditioner is using the gas, rather than the engine using the gas to drive all wheels. What we need to do is, if possible, get to a point where we can start killing those cancer cells, but we can’t do that till you start to get a little bit stronger. This is also taking energy away, the wound infection is, but this is looking as good as I would have expected it to look in a week. We’re going to take the stitches out, take the staples out, and redress it. Um and I want to check you back in a week and we’ll weigh you again today.
I can’t make out a lot of what dad is saying in the recording, so I’ll leave out most of it. He’s basically talking about his weight and how he had been weighing himself every day. At this point he doesn’t have the strength to walk or get into the car. He’s very worried that he won’t be able to make it back. We all wanted dad to go back into the hospital. I’ll jump ahead a little. He was down to 119lbs this particular day. you’ve got to eat. The question is this, are you ok at home now?

Dad: I’m ok, like I say it’s just hard to get up and down. I feel good, but if I could just get fluids back in my body again. When I was in the hospital my hands were puffy and I had fluid all over. Now I drink a lot, I’ve drank ensure, three or four bottles a day. I eat well, I’m just extremely weak.

Dr.: Well the problem is the more that you are losing, the more weight that you lose, the more weakness you have, the bigger advantage the cancer has. Ok, and that’s the problem. We need you to get strength and muscles because looking at you from last week to this week the wound looked fine. The rest of you looks like you are almost a third of a man as you were last week, and when you tell me you’re afraid you won’t be able to come back to see me next week that worries me.

Mom: well when do we need to get in touch with Dr. _____?

Dr.: Dr.______ is not going to start him on chemotherapy until he starts getting some strength back. So it’s sort of a double edged sword. Ok, if I made an appointment for you to see Dr. _____ could you get over to see him?

Mom: yeah we’ll get him over there, we’ll take him.

Dr.: We can set that up for you before you leave and we’ll take the stitches out. I’ve never lied to my patients because I think it is important that they know if things don’t get any better over a course of the next few days or a week you might want to start thinking about who you want to talk to. Are there any people in your life that you want to talk to? You know what I’m saying? Ok.

At this point I am totally confused. Dad and the Dr. had led us to believe that his cancer was slow growing. That he would have a good chance of recovery and he would be able to fight this. Dad had told me on the way there that day to not ask any questions…

Bill: Can I ask you a question? Dad, don’t get mad at me, but could you please explain the cancer to me?

Dr.: I’m not sure what you mean?

Bill: What is it?

Dr.: It started out in his small intestines and the name of the cancer is Carcinoid cancer. It has spread to the liver already. I think we had 40 lymph nodes that we took out, I think there was cancer in 12 of them. So the cancer is in many places besides where it started. It was responsible for the death of the intestines. Cancer is a problem because it acts like a weed. It won’t just grow wild in its own garden, but it puts seeds out in the air like a dandelion puts out the little puff things and any place they land, they start to grow. The cancer, if you want to think about it like that, is like another person or another animal living inside you. It is constantly competing with you for your food and your energy and the more of it there is the more that it takes from you. That is why people waste from cancer. We don’t really understand why but we conceptually think that it’s a competitive thing and the cancer cells grow very, very fast. One and two they don’t die, they stay around much longer than regular cells do. Cells in our body are dying all the time. That’s normal for a cycle. Women understand that because they exfoliate themselves. They get rid of the dead skin cells. Cancer cells stay around for much longer than they should. There are two reasons, their metabolic rate is much higher, they need more calories per cell than the rest of the body does and secondly they don’t die when they should. For both of those things, they cause the body to use itself up. The first thing the body uses is fat. That has the highest energy per pound, per gram. Once the fat is gone, then it starts using muscles. What we’re watching now is muscles are being used up because that is the protein the body is burning to feed its needs right now. That’s not a good thing. We’d rather it be using fat or sugar, not proteins. Does that sort of make sense to you?

Bill: Yes it does

Dr.: we know that there is cancer in the liver, we knew that from the day we operated. We saw that there was a mass there about yay big and in all likelihood elsewhere as well. What we learned from surgery was that it wasn’t just in his liver, it is all in the tissue around the intestines and the only way that you can control that, if you can control it, is with medicine and there is no guarantee that the medicine will control it. What we know is this is advanced. The thing that people always ask me is we know that he was fine till he was operated on. He wasn’t, you weren’t. You knew for a long time and it’s like watching something snowball. The snowball that starts at one speed seems to be going faster as it gets to the bottom because for months the snowball has been getting bigger and gaining more momentum. So that when you finally notice the snowball you’re like “how did it get it so big so fast?” It didn’t get so big so fast after surgery. It’s just in surgery it was at the same speed, but because it was so big it had a head start and it just looks like surgery made it go faster. That’s not the way it is. So what we need to do, I’m not sugar coating it. We need you to be able to get some strength and get some food in.

Dad: I’ve worked hard.

Dr.: I know you have. You need to get over to see Dr. ____ to see if he thinks you can tolerate chemotherapy.


My dad says something and I can barely make out his voice, but I’ve listened to it over and over and I’m pretty sure he says the following.

Dad: I might as well just go on home.

Dr.: Well I understand why you’d feel that way and one of the things we do is never take hope away from people but things are very very bad. There’s no question about that. Things are very, very bad. That is why one of the questions I am asking you is are ok with being at home, or have you reached a point where you need to be in a facility where you need help getting around or are there people at home that are able to take care of you?

Dad: Right now I am able. Let me go as long as I can to help myself.

Dr.: that’s fine and you know it’s really hard to have these conversations, but you need to be able to hear from him what he wants because you can’t make him feel guilty and it’s ok to cry. That’s alright, but you got to hear what he wants and what he’s ready for and you can help him better if you know it. One of the things about life is people always tell me that the patients can’t take the truth. It’s always the families that can’t take the truth. Patients do just fine, because patients know. Now, what I want to do is I want to make you as well as I can. I don’t want to beat you up. I don’t want to put you through anything that is really torturous, but you don’t need to take your weight everyday to know that there isn’t as much of you as there was last week. You know that losing weight that fast is not a good thing. Once the water weight is gone and it’s just muscles you’ve got a problem and I think that, um, the question I’ve got for you is, quite frankly, are you at peace? Ok, you need to talk to them; you need to talk to them about this.

Again dad’s response is so faint that I have listened to it and tried to remember as much as I can and I’m pretty sure he says the following.

Dad: I don’t want any treatment.

Dr.: Ok, I’m not pushing that. Is there anything I can do? Am I being too unkind here?

Dad: No

Dr.: don’t tell me that to make my conscience better.

Dad: If I can’t get back to see you what do I do?

Dr.: you call me; we’ll take care of it by phone. See, we have people to come out to the house to take care of you. We can arrange for that. Ok?

A lot of the conversation at this point involves me and mom and the doctor talking over each other, and it’s very difficult to make out things word for word. Essentially we were discussing Hospice care, and arranging for an initial appointment. Dad was concerned that he was doing something wrong and the doctor was assuring him that he wasn’t. This was the first time we had found out that his cancer had spread throughout his body. We didn’t know it was this grave. Mom and I both hit the floor and shattered as it were.

Home the Saturday after Thanksgiving

So it was very difficult having dad in the hospital on Thanksgiving day. I knew that it would be even harder on mom so I had fretted about having as normal of a day as I could for her, and it had finally come. I cooked a 20 lb turkey and some of the trimmings, my sister brought a few dishes over. We all tried to have a good day, it was difficult not having dad home. After we ate the family dispersed fairly quickly, which was sad for me because it was over so soon. Dad wanted me to bring him some pumpkin pie when I came up to see him. He didn't really get to eat any, he was still too sick.

On Saturday Mike and I had gone up to Raleigh to unwind at Borders. It had just been so hard on me with everything that had been happening to dad. We had just sat down and I remember getting my coffee and picking out a book to read when mom called. She said they were going to release dad from the hospital and she needed me to come and get them. I was overwhelmed and I was trying to figure out a way to get out of having to take on that responsibility. I really feel horrible about that now, but it was just my emotions at the time. We finally made it to the hospital an hour later and dad was still waiting in his room to be checked out. Teresa and Gary were there as well. We all were sort of shocked that he was going home so soon. None of us believed he was ready, but his doctor did... I drove him and mom back to the house while Mike followed in our car. I remember I drove so carefully. I think I literally held my breath all the way home. I had to be so aware of stopping and starting and turning corners. I was carrying home a very sick and delicate man that I wanted to make as comfortable as possible. It seemed so foreign to me having to help my dad out of the car and into the house. It took us all, Teresa, Gary, Mike, mom and me, to help dad. He had no strength, no leg muscles to lift and move his body up those steps. After we had done that, I was suddenly aware that dad wasn't the man that I had spent the spring fishing with, he was a shell, a very fragile shell.

Once he got settled into the living room and in the recliner, he wrapped up in a soft blue throw and tried to acclimate as best he could. We all thought this was the beginning of recovery. He had a hard time those first few days. Mom didn't know what to do to help him, and dad was trying to learn how to empty his own ileostopy bag. He was actually walking back and forth to the bathroom to empty his bag. He started eating more and more, but everyday he weighed and he kept losing weight. Till finally 11 days later we took dad back to his doctor to find out what was going on.