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…