Three months. Life.

It’s been a little over three months since my father passed. I asked Doyle today, on the way to the airport, if it’s weird that I just keep remembering Dad’s face right after he died, and playing the moment of his last breaths in my head over and over again. I remember the heat of the living room and the lack of weirdness in walking through the room with him lying in bed, waiting for the nurse to finish her work. It’s not something I dwell on, not really. But there’s these surprise random moments where memories of that day pop in and make me think; moments that give me clarity of emotion that surprises me. It surprises me because I have a thick wall of “coping” with things that happen. I can function, life does not impede me. Yet. Yet. I walk up to that moment in my mind and I can’t quite cross into it. The large of it all stops me.

I keep receiving letters from the TRU hospice care facility, the people that helped me take care of my dad. Most of the time, they are letters for grief counseling. Sometimes a random person has given a gift to them in his name. The latter is easier to read, of course. I tend to be dismissive of the former. I don’t need that. I am fine. See? I can function perfectly well, thank you very much. Life does not impede me.

But life is impeding me. No. Death is impeding me. Is this something I’m supposed to go through? Should I scamper up that dark wall and drop into the Mordor of feeling? Is it that I can’t face my own death? Is it that I just feel like it’s all futile anyway, I mean, why bother? Can’t I just make this grief time thing shorter so I can get on with things and forget the past? Can I be snarky and harsh and critical of me, of him, of life?

I find myself being overwhelmed more easily these days. Dealing with change in one’s life is one thing but dealing with change and with estate filings, that’s another. I find myself caring for my siblings more than I thought I would, but I don’t know why. Yes, I do. I think I’m responsible to make sure they have what Dad wanted them to have, as quickly and as easily as possible. I worry that something will go horribly wrong. What? I have no clue. Like, I’ll miss something important. I find myself dealing with twelve things at once, like life insurance, escrow, car titles, bank accounts, and dinner for Doyle and me. Grocery shopping and lawyer’s bills, electricity payments for two houses, and wondering if my actions will cause anyone else harm. Are my cat’s okay and did I pay Dad’s electrical bill? And traveling… traveling for my avocation, traveling for my vocation, and making sure that I am still unpacking boxes in my new house so I can finally live there.

Dad’s house is in escrow, the estate sale has come and gone. A roof will be put on soon, to replace some hail damage. The car has been paid off and is being sold and the garage is cleaned out. The remnants of a life have dispersed to the four winds of heaven. Memory is all I have. Sort of. Even that is a little shot these days.

It’s no wonder I’m crabby. I get it. I can intellectually see it’s a lot. But. Someone’s got to do it.

This too shall pass, and I tell myself that often. I tell myself that phrase when the world seems dull, that I miss humanity and can’t stand them. I tell myself to move on, when I feel lonely and living out of a suitcase. I play games on my iPad to pass the time and fret that I am not more productive. I wonder why that happens – making an impact on the world seems less shiny. Less pretty. Less useful. It’s easier to hide. It’s easier to be dull and move on with the day to day.

I ask myself often why am I here? Why are any of us here?

I have learned a lot about dying and death, and I hope to make mine a lot easier on whomever is around at the time I go. There’s so much you can’t conceive of, and the ones who have dealt with it before know what I mean. I know you’re out there, and yet, you all survived. Happily, it appears. Maybe that is the illusion. Maybe that is what we don’t talk about enough and should: surviving a loved one’s death. The world is just all weird. My apathy is growing at the same time my sense of self is shrinking. Why should the death of a parent, or anyone close to you, trigger this kind of backing up into the dank, garbage-filled alley of fear?

I don’t think it’s fear. Really. I think that there’s something that happens to you, over time, if you don’t walk through grief with people who are alive and in your life. There’s a kind of crystallization of feeling. Emotions feel disjointed, out of step with what you are living. You sense everything from a great distance and the closer you come to really feeling something, the less you remain…you. I’ve done some soul searching, some grief… a little bit. Not nearly enough, I think. In the honesty of the moment, I wonder if I am resentful of the fact that I would spend tears and time on someone who I’m not sure felt depth of feeling for me. For all his goodness, he didn’t really connect with me. It is interesting how much I found out about my father and his family after he passed. My grandfather on dad’s side was adopted, and his name was Lawrence Comfort. He was adopted by the Bakers, so they of course changed my grandfather’s last name. Huh. Found my father’s first divorce papers, including the name of the woman. Elizabeth. He buried them in his military records, reminders of his time in the Service that went wrong. Did you know that some insurance companies what you to put all marriages someone has? I didn’t. Good to know but certainly something for shaking out the skeletons in closets. Dad never shared. He never talked. Even in those last weeks, when I was desperate to be there for him, sitting by his bedside. He never really spoke. Not about what mattered.

There is resentment, I can feel it, and part of me feels ashamed of it. Ashamed that I should feel resentful of a man who took care of me when I was a child. I wonder if being adopted makes it different? Who knows?

I think, more than anything in these last few months, I’ve learned to say “thank you” to people who say I’m sorry for your loss. Part of me thinks they don’t really mean it and, when it comes down to it, maybe neither do I. I don’t like being the object of someone else’s pity/grief/sad feelings. It makes me uncomfortable. Like I don’t deserve it. I say thank you so I can quickly move on to the business at hand, whatever it may be. I don’t want kindness. I don’t want empathy. I’m not sure what I want. I do know all that empathy/sympathy/grief makes it hard to create the shell that allows you to deal with day to day things. It’s as if saying “I’m sorry” tries to poke holes in its fragile membrane. I want to scream, Leave me alone! I don’t let many people in – that’s very controlled. If you think you know me, you should know you only have one face of me. The rest are tightly sealed up in a box, in the back of a closet, where only one or two have the key. You know who you are, I hope.

What have these three months taught me? Life. They have taught me life and death and life, which is all just life. It’s all a cycle, over and over, until we get off the Ferris Wheel of human karmic debt and experience. Don’t worry about me. I will be like the all-the-rest-of-us who lose a loved one and have to still keep breathing in this sublunary abode. We all do this. My journey might be mine, and unique, but it’s a journey each of us has or will take.

This piece of writing has taught me that I am a mirror of my father: closed up, walled off, coping with the day to day so I don’t have to share the humanity of it all. He closed off, I felt resentful because I wanted the Truth of him. It can only teach me that I shouldn’t wall off me, because there might be you who feels resentful of me for not sharing. God forbid. I’m human. Go figure.

I’m sorry if this was a raw moment for you. It certainly is for me, if necessary. I wanted to share what I was feeling and thinking with those of you who came on the journey with me and my dad. Writing is the best way I know how to deal with this and will probably do this every so often, to let you know what’s come up. I hope you don’t mind me sharing. I think perhaps more of us should do that, so that more of us can get on with it. With Life. With living. I may not say it nearly enough – thank you. And I love you in my own silent way. Maybe that is the key to all this: take away the shields and be myself, and not the silent, unyielding voice of my father.

Post-Mortem

For those of you who read all through Dad’s Journey posts, when I was staying with him during his last days, I wanted to write a little bit more about the past week. It was a week ago, on the 5th, that he passed. There’s been a lot that I’ve been processing, so I thought I would do a true post-mortem, a share about my exploration of his life that I have discovered in the past week.

First, let me say that one of the good things that has happened has been that we, Doyle and I, have grown closer to my sister and her husband. She said “I feel like I understand you better.” I could say the same about her. She’s known me at my worst and at my best, and I’ve probably known her the same. I’m feeling freer to be me around her, and I think the same is true for her. In this sense, something new has grown out of dad’s passing.

The first day was just strange. I always thought it might be weird to be in the room with someone who had died. It wasn’t. In fact, it seemed rather (oddly) natural. The nurse came, an associate pastor that my father loved was there, and a social worker showed up. The TRU Hospice worker that had walked me through things, Jessica, was back on the phone with me and telling me “you did well.” It didn’t register. I felt like I had run a race and all the people who are supporting you show up after the finish line to give you water, help you walk it off. It still felt frantic. I thought at any moment that he might sit up and say, “just kidding.” I certainly expected him to keep speaking, in some fashion. It’s as if your brain just can’t turn off a life. It needs time to process.

After the mortuary attendants came to the house and picked dad up, it simply felt quiet. Peaceful. I sat on the couch and reveled in the peace. I was hoping he felt the same. There was an expectancy of…something… like an exhalation that came after holding your breath for so long. I wasn’t sure what to… do. So, I sat and waited for time to pass. I had planned on spending that night there because I knew we would have to continue to do more work there over the next few days. I think I asked myself several times, “what do I do now?”

Reflections

After the last of the people left, including Doyle, I walked back into the house, closed the door, locked it, and said, “well, it’s just you and me, Dad. Well, and the cats.” I felt like I needed to talk with him, or whatever energy was left of him. I was a little numb and exhausted but read a little before going to bed. I slept a dreamless sleep.

The next day. The next day was about assessing. What is the measure of a life? What is one supposed to do when you have new things to care for? It’s like someone abandoned a baby at my door and now I had to care for it. These things were alien to me.

My sister arrived; she started taking down the pictures throughout the house, as well as mementos that said “dad was here.” Things started being sifted through, moved around, discarded, or appropriated. We took it slow, measured, thoughtful to some extent. Each of us took a room and the day went quickly. What to keep? What to discard? What should we do with x? What did it mean to us? What did it mean to him? It was a mental shell game, trying to find meaning in things.

I was staying, one more night, because we had the cats to think about and, well, more things to do. I wondered if my father was still “around” and I sat quietly on the couch that night, thinking of what he might think about what we were doing. There’s a sense that I wanted him to care; honestly, though, I don’t think he did. I think he had already moved on.

The next morning, as the walls were bare and the items started being packed up, the house felt plain. It felt as if it was a just-built tract home, the remnants of my father’s life were peeling away and little remained. I thought about what a life is, and what we leave behind. As creative beings, when our house is emptied, what will be left of us? For my father, it was us children. There were no photos, writings, books, paintings, or other “works” to say, “here’s my view of this earth,” or “here’s what I want to impart to the world.” My father was not a creative man in the arts but he did have a way with metal, steel, and gadgets. He loved to work with his hands at mechanical things. Doyle just recently said, “your father had a way with tools.” Sometimes it takes a different set of eyes to assess those close to you; I had never thought of my father in that way but yes, it was true.

51AB1345-5442-4F50-9855-FC13000C4F4DAll of this, of course, made me reflect on my own legacy. What was I leaving behind? How will history judge me? Or will it even bother? I do think there is a drive inside of each human being to create and in that creation, we enhance humanity. It may be a gift of art, or a gift of tool use, or the children we bear, or the material we bequeath. Is any of it better or worse than anything else? Probably not. What my father left behind was not art, not material things. He left a legacy of “can do,” of trying a variety of things and not being stuck in a rut or a hole. His walls might have been “Navaho White,” but his heart was as colorful as his ideas.

It’s hard not to judge your loved ones by your own standards and I have to say that perhaps for a good deal of my life, I did judge my father by my standards. It was wrong to do so, and hey, dad, I’m sorry that I did that. I should have celebrated who you are and what you were doing, and what you wanted to do. The apple didn’t fall far from the tree because I knew my father did the same thing with me. In the end, I will remember sitting quietly with him while we talked about old TCM movies and big band music and the Marx Brothers. Dad loved Hallmark Christmas movies and angels. Judgements, be damned.

All that is left now is the material hubbub that comes with closing out a life. These are the things that matter little and yet occupy so much time. I’ll take some time, look at old pictures, and perhaps create space in my own mind for the life that was my father, and help keep him colorful in heart and spirit. His birthday is coming up, on August 15th. I think I’ll make dad’s favorite, apple pie, and raise a cup of coffee (he didn’t drink!) in his honor. For those of you on the journey with me, feel free to do the same. And send pictures of your apple pie. Dad would have liked that. He would have laughed.

Dad’s Journey has ended now except inside of us. I hope you stay with me on mine and let’s share this life together.

~TDD

Release

There is a lot to share here, and it may or may not be brief. I sit now in my father’s house, with the clamor of people and machines diminished. No, not diminished. Gone. The oxygen compressor is silent, the hospital bed makes no more breathy adjustments to relieve pressure points. The man that was my father is gone.

The day started in chaos. I knew it would be a difficult day. The night was filled with noise – firecrackers, Roman candles, moans and coughs from the hospital bed, a c-pap machine and soft music that never shut off. I remember looking at the clock at 1:37AM and going out to check on him. He lay on his back, as he had for days, moaning through his breathing. I sat on the chair beside him and watched, feeling more than a little helpless. I knew this was hard for him. I also knew this was one thing I couldn’t take from him. I meandered back to bed, not really sleeping much.

Finally, at just before 5:00AM I went into the living room where the hospital bed was. He was in pain. Poking at his rib cage, he could not enunciate the words. The dying speak to us in primordial or primal ways. Grunts and pointing, moaning and cries, it speaks to the deeper compassion we share as humans. I got the morphine and gave him a full dose. One hour later, furrowed brow; the pain was still there, one more dose. It’s funny the dread the living have for something like morphine. I thought, this is too much. I gave it to him because it was all I knew how to do. Relieve the pain, extinguish the fear.

At 7:00AM, his breathing was labored and he was beginning to cough quite a bit. I’ll leave out particulars, I promise. At 10:30, I felt the deeper chaos coming over me. What could I do, who could I ask, what is next? I’m not equipped to deal with this, I thought. I don’t know what to do. Jessica, at TRU Hospice, was a voice of reason. She walked me through some things to try, stayed on the speaker phone when his coughing became very bad and he just couldn’t catch his breath. She said “It’s tense, I know. I’m with you.” A clear call in so much unrelenting activity.

Things were swirling by 11. We sat him up, then on his side, then back up. He looked at me with very wide eyes – wider than I have seen him open them in weeks. I was struck by the beautiful green and rheumy whites of his stare. They were red-rimmed. I held his head and said I was there for him. My sister took one side, and I took the other, holding his hands. I could tell when his breathing changed and then suddenly, like someone shutting off a light, he was gone. Just. Gone. My mind took a moment to acknowledge. I had my hand on his chest, then on his neck, checked his breathing. Silence. I asked Doyle, who was there, to check my sanity and his responses. No, I was right, he was gone.

It is startling how soon last breaths come, and how fast they find their way to the atmosphere. How quickly peace descends. How silent silence really is. My sister began to cry quietly, and me? I sat in wonder of the human life. The birth, the death, the long stretch in between. I wonder why we have children, only to allow them to die. I kept thinking “what is he thinking now?” He knew that I was fast approaching the point of not being able to care for him alone. And the stubborn old coot said he wanted to die at home, so damn it, he was going to die at home. Well, he did get his way and here’s a toast to him.

I sat with him for a while and recited some of the Bardo Thodol to him, as much as I could with so many people around, trying to help him ferry the passage to “The Intermediate Stage.” He was angry that Death had come for him. Shouldn’t he have been spared? He wanted 15 more years and why couldn’t he have them? He was fearful that Death had come for him, too. If you take no time to form some opinions and hold your thoughts about the next Great Adventure, of course you will be afraid. A life of dodging death is not a life ready to die. The eternal question and answer await all of us. It behooves us to figure out what we believe because at the end, it’s the same journey we all must take.

I don’t believe my father’s journey has ended. I believe that his essence, that animus that sinks into our very tissues, is energy that is never wasted. It settles back on the air, the earth, the rain, and the fire, feeding those new beings yet to be thrust into this world. Perhaps it is an apple, to feed the young child, or it’s the sparrow that is singing in the June sunshine. Perhaps it is both. I would like to think that the terrors of this world are over for him, the uncertainty and fear are vanished.

One of his cats now stands on the empty hospital bed. She had stayed with him the last few days, sleeping with him and occasionally pawed him. She’s looking for someone and it’s not me. I am tried. Bone tired. Doyle said to me, “the hard part is over. Now you do what you do best.”Organize. Project manage. Whip the ship into shape and make it ready to sail. I will sleep tonight and tomorrow deal with the leftovers of this world. I hope that he sleeps very well tonight, in the Light and adventure of a new life.

For me, I sleep surrounded by the love of so many people, shared with me over the last few days. I cannot reply to you all, not with adequate words of gratefulness. Just know that you journeying with me and my father on this road has been a comfort, a blanket if you will, of solidity and love. I never knew the depths of love that surround me. I promise not to be foolish with it as we move through the rest of our days and nights together. I really do love you all.

Namaste, lovely father. You were beloved and loved by many, and a joy to my heart. I’m glad of the time we had together.

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H. Leonard Baker – August 15, 1932 – July 5, 2018

Learning

I haven’t written in a few days because I’ve been in my head quite a bit. I’ve been meditating after dad goes to sleep, which is early these days, and thinking about what I’m learning from all of this.

The week has gone by smoother than the first week, with less hysterics from both of us. I’m learning not to hover and he’s learning “Thank you.” In speaking with a dear friend tonight, via phone, she asked, what was I learning? What have I learned not to do, or to do? We talked about last week’s post and that long list, but there’s something more.

I’ve learned to let go, to not be in control of those who can’t control themselves. Yes, it was an illusion anyway, but I felt like I needed to control a situation that was in chaos. Remember that I only like the chaos that I create? Well, there you go. It’s one thing to recognize it as a mental need, or intellectual construct and it’s quite another to actually put it into practice. Case in point…

Today, I needed a break. I asked my sister to be with my father for the day, so I could go back home, get some fresh clothes, love my babies, and hug my husband. She said “sure.” What an angel! I went over the do’s and don’t’s and gave her the run down. She seemed confident she could handle it. I let go of the need to control everything – she could handle it just fine.

Now, I need to preface this with a setup. My father has found new purpose in helping wrap up (in bubble wrap) the collection of angels he has. This is a considerable collection. He wants us to bring him the angels and while lying in bed, he wraps and tapes them and then hands them to us to box. He likes this quite a bit because, in his words, he feels useful. It puts his mind and hands and arms to work and he likes to be tired. So, we have started this project in the last few days and he has been going to town. So much so that he just wants to keep going… every day.

This morning, after my sister arrived to cover me, I was grabbing my things to walk out the door. My father stopped me and said, “Bubble wrap?” You see, we had run out the day before and I was hoping that perhaps the day’s crew would take care of it and I could go. I really missed my home and babies and husband… I was being selfish. I was longing to just taste a little bit of normalcy. I turned back and started to flop into a chair and opened my mouth to argue. I looked at him, looked at my sister, and just realized that it was futile to fight it. Just go find the bubble wrap and don’t spend your time, Kris, trying to rationalize your way out of it. I stopped mid-flop, got my phone and keys, dropped my back pack, and said “I’ll be back.”

Where, at 7:20 AM, do you find Bubble Wrap? Yes, Walmart. After I figured this out, I ran in, grabbed five rolls, dashed through the cashier, and went back. On the way back, I realized that it was internal, in my head, where the feelings of frustration and anger were created. And I was creating it because I couldn’t control the situation. So, I chose differently. I chose again. I worked hard, in the next 10 minutes to not get snippy, blame my sister, blame my brother, hold them accountable, or worse, blame my father. I just chose not to let it get to me. It was a problem that needed to be solved, so I solved it. The last thing that was going to help was for me to get upset and angry over something that was beyond my control. Let it go. Choose differently. Choose to be happy. I think it’s easy to do but the first step, letting go of the control, is the hard part. Happiness seems to take root easily when the garden is ready for the seeds.

I got back to the house and just made sure that down deep, I killed the frustration. I smiled, changed my tenor of voice, laughed and came back in. My father immediately said “I’m sorry, Kris, I didn’t mean to mess you up.” I said, “No, no no. You didn’t. I found the bubble wrap and you’re good to go. There’s nothing messed up. Please don’t worry about anything.” I kissed him on the forehead and told him I loved him, hugged my sister, and got on the road. All told, I was only 20 minutes later than I thought I would have been originally. The bonus for all of us was that I left in joy, not in anger. He was happy. Nothing was harmed and I hope that I was able to make sure my father had a good day.

He must have because they wore him out. He’s in bed, making these god-awful moaning noises while he sleeps, so he’s definitely sleeping well. It makes me happy that he has a purpose and feels okay with what he’s doing. There was still mess to clean up, pills to give, catheter to empty, and water to put by his side. I can control all those things. I’ve learned though that hovering is bad. Whatever happens, happens. I can only take care of how I react to it and the best part of this is that I’m learning how to react gracefully and happily, rather than angrily. Better for all of us, I think.

Tomorrow, we go back to status quo, for a while. For now, it’s time to sleep for me, too. Good night, everyone.

~TDD

Searching for Answers

Last night was a little tough. No the last few nights have been a little tough. I’m tired but listening to the sounds in the other room, signs that my father needs me. Doyle was here on Thursday, and he bought a baby monitor. That really helped. Then I read on the internet that people do this often. I feel late to the game, like I’m one step behind what everyone already knows. I question myself. Should I have known this already?

I’m learning more these last few days about a variety of things. What is a Foley catheter? What happens when days and nights get turned around? I need to know more about Sundowning Syndrome, yes, look that up. What are some physical stages the dying go through? Am I morbid and terrible for even asking?

My wise woman friend dropped in yesterday and offered me something that I had really just read about; the need to talk about the past and go through past experiences with them. My father loves old movies and I think it’s his way of connecting with the past. I let him talk, let him explore it. He didn’t sleep well after watching some last night but I think that was the pudding he had at dinner.

He doesn’t want to talk. He wants to get better. He wants to exercise. I know I messed up because I wanted to discourage him, only because he will hurt himself again. My job is to keep him safe, right? Comfortable, right? He wants to get up and move to a chair (impossible without someone to help me, and even then…), he wants to use the walker to hold himself up and do leg lifts. I can even get him to roll in bed much less stand assisted to use a walker. What do you tell someone like this? No? I’ve figured out that I can tell him we have alternatives, like doing leg lifts in bed. I will, once he gets into a mood to figure it out. Today was not like yesterday.

Yesterday was a better day overall since I felt like I had help, he ate, and he physically felt…better. Awake and alert. Morning is always better. Today, thought, morning is not better. He was restless, not comfortable, and all over the place. I fed him pills, repositioned him this morning, gave him some water and some anti-anxiety meds. He’s resting now, at least he’s seeming to. My father does fake it when he thinks it will make people feel better. Damn stoicism.

So, I took the opportunity to make breakfast and catch up on work emails, and search more for what I should know, what I should prepare to deal with. I’m fortunate for this journey with him so I can know what to do for myself and others. This was an interesting tidbit, from WebMD:

As the body’s systems weaken in the months before death, people tend to become less active and begin to look inward. They start to withdraw from the world around them and often use this stepping back as a way of preparing.

People tend to become less interested in food as death approaches. This may feel strange. But even though one of our main ways to comfort people is to feed them, there comes a point when the body is simply not able to digest the food it’s given.

A couple of weeks before death, people can become disoriented. Days and nights switch, and sometimes they can’t keep their eyes open. Other times they can’t fall asleep. This can be particularly hard on caregivers.

During the week or so immediately prior to death, you’ll see physical changes: the pulse and breathing will slow, blood pressure will drop, and skin color will become duskier.

Within a few days or hours before death, there might be what palliative care professionals call “terminal agitation.” It’s a kind of energy or restlessness that might be expressed as “I need to get out of here.” If your loved one is deeply confused and distressed, the palliative care team can offer a sedative that will ease this transitional symptom.

Maybe everyone knows this but I didn’t. Well, I knew details about the week or so before death, and the time of death, hours and moments. It’s interesting to me how Eastern, and some Western, religious and spiritual texts cover this from an internal perspective. I’ve spent too much time in the Tao Te Ching, perhaps. The Bardo Thodol, or Tibetan Book of the Dead, really covers this well.

This WebMD section was helpful and gave me some comfort, some idea. Let’s face it, I know I’m a controlling person at times. Stop laughing, peanut gallery. I know it. Tactical, Practical. Let’s get ‘er done. I have schedules and I like routines. I need routines. I need to know who is coming to do what when, and who is responsible, who is handling it. I have two different types of calendars for my father’s care and I’ve changed them three times to get them to work right. Over the course of three days. I think I finally got it. My point: I need to prepare. I need to understand. Not because I want to control the situation. Seriously not. It’s because I don’t want the situation to control me. I want to be able to come up ahead of time with plan b, c, and d, with a few extra options on the side. I look for ways to solve, to help, to make the situation smooth. One of my employees said, a while ago to me, “Slow is smooth, smooth is fast.” She had it from the military but I’ve adopted it for everything. I love it. If I take time (slow), and plan (smooth), things will run well. Maybe not fast, but well.

Yet, dying can be messy, can’t it? Physically, mentally, and emotionally messy. I have to learn that, too. Let messy be. Carefully clean it up, with a plan, with consciousness, with determination. I’m sharing this with you because I think every caregiver must feel it – but damn. Just damn. The things that go through your head. We can talk about those some other time, when I won’t feel vulnerable and judged.

The cats have now discovered that my father is awake. He wants raisin toast or an English muffin. And orange juice. And to start an exercise program. The cat is bothering him. Time to smile and go to work. I hope you’re patient with me as I dive through this. Having you there is weird. I’m not used to this kind of sharing. Love to all.

~TDD

The Small Things = The Big Things

There have been a host of things that have run through my head about what not to do in life, and what to do, to not have to face some of the difficulties my dad is facing. Some of them are small, some are a little more significant, but here’s the list so far. Feel free to add to it. These may be reminders to me more than to anyone else. Take note, Doyle.

Never put your checking account into a living trust. It makes it impossible to actually use to fund any services. If you really want to share ownership, put your supporters on as signatories, not trustees. The legal hassle has been… crazy.

Walk until you absolutely cannot walk any more. Never give in to the wheel chair. Never. Do weight training. To yoga. Move it or lose it isn’t just a cliche. It’s true. Really, really true.

Eat well in your youth, no matter your age. It’s never too late to start. It will matter quite a bit when your body begins to fail. Give it what it needs to fail less.

Oh my goodness: moisturize, moisturize, moisturize. Seriously. Old skin is so thin, you can’t even conceive of how prone it is to damage, bruising, and infection. Moisturizing is going to save you. TRUST ME.

Similarly, my father’s skin is really okay on his legs. Why? He never exposed them to the sun. All that stuff they say about getting repeatedly burned and not wearing sun screen? Listen to the proto-Goth, Christine Cianci on this one. Don’t get burned and wear at least some protection. Your future self will really really thank you. So will the people who have to try to keep you together when you keep leaking. If you get an infection, treat it right away. Thin skin = more breaks = more infections.

Learn a hobby. Don’t just call TV your hobby. If you can’t read any more, listen to books, work with plants, learn how to move about your house and take care of it. Don’t hitch yourself up to the TV and think it will give you all the company you want.

On that same note, go to a senior center if you’re lonely. Get friends. Have coffee with people. Enjoy your Meetups or classes. Never stop socializing. That is hitting close to home. I have this wide and beautiful and totally connected social network of friends and family that have reached out. I am not shy about asking for help, when I can. My father has no one. No friends, doesn’t know his neighbors. He thought for a long time that my brother would move in with him and take care of him. He never counted on my brother not being capable. That leaves really me and my sister; she has an hourly job and cannot get financial support to be out to do this. There are no other friends to assist, no one to check on him, no one to tell them they care or are thinking of him. He was never the neighbor that went out of his way to meet people. Yet, people have been very kind to him, when he lets them. Just don’t be lonely. And don’t be alone.

When it comes to finances, more is better. Save for your retirement, not just because you want to travel the world but so that you can die with dignity and medical support. My father has Kaiser, Medicare, Veteran’s benefits (which I had to secure VERY quickly once he got into hospice – and it wasn’t easy), and a very strange Cancer Insurance. They are sending me a claim form. Uh huh. It’s still not enough. Someone still needs to live with him to be his caretaker because he can’t afford 24×7 care in the home. Take advantage of what you can, because it’s expensive out there. And confusing. Very, very confusing. I have had three lists of medicines he takes, four pages long, with various names. That’s the easier part. There’s terms and names and processes and procedures. Try to keep it simple, if you can. For your own and other’s sanity.

Oh, and while I’m at it, let me say this: please get rid of your old medicines. Take them to a place that accepts them, like a hospital or a fire station. Yes. Do not dump them down the drain as it can have an effect on the water supply and other humans, and not in a good way. But please, get rid of them. For your support person’s sanity and peace of mind. I do not need to reference the eye drops he had five years ago. All seven bottles of them.

Give your support person access to your medical support, financial “stuff,” and any other things they need to know to run your estate before they actually need it. Make them know what you have done and want done. I learned my father created a power of attorney for me fifteen years ago, and never told me. That would have made a lot of things easier in the first few days of this “hospice” care. And also – update your legacy and estate “stuff” often. Once every five years. Make it current when you change things, like sell a house or build a new one. Make it easier on the legal team that has to sort through things earlier rather than later.

Remember that you can’t take it with you. Try to enjoy your life instead of sacrificing your own comfort for that of others. Be sensitive to the people that will support you at the end before you have to. What do I mean? I mean that if you think that you’re going to need nursing services, set it up ahead of time. Accept that you might need to be in a place that isn’t your home, in order to receive proper care and not burden those you love and who love you back. We all pass away, we all transition. We need others to do this. Remember, the team? Try to really work together.

As a caregiver, be sensitive to others on your caregiving team. Say please. Say thank you. Offer to get them dinner if you’re picking something up. Offer to let them grab an hour’s nap if you know they had a rough night. Get the nurse an iced tea if you have to run an errand and pick something up. Time and food are the things I find I have little over. Sleep. Good food. Now I know what they mean about consciously taking care of yourself. It’s so difficult when someone you love is dying and immediately needs ice chips fed to them, or to have their bed changed, or the TV channel changed, or even just someone to talk with them about what’s happening in the world. It’s easy to forget yourself and hard to remember whether you’ve eaten dinner or not. Until 3am when your stomach growls.

I think the last thing for today’s thought dump is to firmly situate in your mind that your dying elders have little dignity when it comes to dying. Physical dignity, that is. Get over the fact that you need to change a diaper or see things you never hoped to see on your parent. Chances are, they never hoped you would see it either. Be kind, work with nursing providers to learn the best way to do things not to hurt them or make them feel vulnerable. It’s easier said than done when you do not want to clean up the results of MiraLAX. Hold your breath and get your momma or daddy pants on. Pull out a wipe and just do the needful. This is about them. Not you.

These are the random thoughts that struck me over the last few days. I’m sure there will be more. I’m learning not to hide from the reality of it all. I have always thought that death isn’t difficult; it’s dying that is the trouble. That seems to be all borne out this week and I’m sure in the days to come. Both pieces, dying and death, are separate phases of the journey. Here’s to hoping my sister will offer to bring me dinner, and seeing my husband (that is, my rock) tomorrow. And a lawyer. And the CNAs, and maybe another nurse.

Dad’s still not willing to talk about anything regarding the spiritual. That’s okay. Perhaps it will come later when he has to listen to the universe speak. Right now, he’s yelling at my brother to try to make himself heard. It might be a long, long night again.

Love to all. Thanks for hanging in there with me.

~TDD

Care and Self-Discovery

The morning starts with anxiety. Probably dad’s but most assuredly mine. Dealing with this whole estate thing makes me want to get mine in order. Right. Now.

The days are fluid right now, more fluid than I am used to dealing with. Captain Anne Rackham loves order out of chaos. I like chaos, but only when I make it. I’ve tried to work some today but it’s been difficult, running between the hospital, the bank, and home for delivery of beds and what not. Between the printouts of medications, letters to the bank, and calling the attorney, I know I’ll sleep well tonight.

Each morning starts with a check-in from two of my favorite men, Doyle and Michael. Doyle is my ground, my anchor, and my true “other.” He gets the mail and remembers to water the plants, checks in to make sure I took my own vitamins and have slept enough. When lightning strikes, Doyle is my lightning rod. Michael checks in with the emotional and spiritual me. He reminds me to be me, to be my authentic self, which is a little woo-woo, tapping into that unseen part of life that keeps us all evolving.

Out of the fires, a Phoenix

Random people from all my various lives have dropped in. I know that everyone is there, consciously swirling around me like fireflies, giving me shining bits of light in the darkness. It’s not really dark, though, not yet. It’s twilight. The leaves are rustling in the hot summer breeze and the fireflies hover just out of reach. I know they are there, and it is a comfort. Every once in a while, one will land and impart some bit of wisdom to me. Yesterday morning, one of them, someone I have not seen in years, dropped me a line. I find her to be her own voice, a woman of wisdom. She said, “For many reasons, you choose to make this journey with your dad. Be sure to let him know it’s your choice, and remind him of the times he was there for you. He’s going to a place of no sin, no sickness, no death. There is no fear, only peace.”

I thought, at the time, he knows this. I don’t need to say it. Huh. My father’s daughter, for sure. When I went back to the hospice care facility, I sat down and just stayed with him in silence. He hovers between sleep and talking, eating, drinking, and more sleep. Just before I left, I held his hand. I spoke the words she had said, not exactly, but in my own way. He didn’t speak to me. He just held my hand and squeezed it a little. It’s the best that he can do and I honor that.

Michael and I talked about that, briefly today, and gave me the advice that I was doing all I was supposed to be doing, and that’s why all the fireflies are there. I think that most of this lesson, right now, is my own willingness to accept help. I am my father’s daughter. Many people are worried that I will go it alone and for many years of my life, I might have. Support was rare. I think I’ve learned enough now not to go it alone. Dad’s situation has taught me that, if nothing else. Going it alone is how his cancer got so advanced without us knowing it. Going it alone is now why he won’t live to 100, which was his goal. Life is a team sport, I said to Michael, and we all make it to the finish line. Me, personally, I just want us all to do it together – my entire team. As a team.

handsAs I was meeting with the doctor today, and looking at his wounds, I was standing at the end of the bed, looking at him. He was surrounded by women fussing over his wounds, making him comfortable. He loved it. He even told them that. Then he looked at me, standing next to the doctor and said, “Kris, we’re going to make a nurse out of you yet…” I chuckled and said “Oh, you think so?” Then I chastised him for getting out of bed and making wounds in the first place. “No more getting out of bed alone, mister.” I wagged my finger at him. The doctor chucked behind me and said “Amen, sister. Listen to her, Len.”

I left today with a smile, because at least he’s coming home where he’s happy. Now, I know, the hard work begins.