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

Days of Forever and Regret

It’s difficult to listen to your own thoughts in the silence. It’s difficult to listen to all the words of sorrow, when there is still too much to do. There is no sorrow right now, for me or for my father. There cannot be because he’s still alive. He’s still part of this world, determined to be part of it for as long as he can. I can’t blame him. I think there’s a stubbornness of each of us to live as long as we might, to get done what we need to get done. It’s my job to remain positive, upbeat, siphoning off his self-pity and quiet into some kind of action. No, wait. That’s not what I feel but what I must portray. If I have to scream, “go into another room or outside and let it out. Never in front of him.” I get it. Who would want that? I repeat in my mind, “it’s not about me, it’s not about me, it’s not about me.” His world has taught me to think differently than I act. I’ve never been really successful at that, hearts on sleeves and all that.

Much of what he says, I don’t understand. He’s so in his head, his own thoughts, that I capture only the last fragment that comes out in voice. His throat is raw, his tongue is sore from thrush, and he doesn’t want to eat because it hurts. His hand shakes and he has little power in his right hand. He can’t write much, and his legs have about 3 seconds of staying power, especially the right. Most of the time, he’s still cognizant of what’s going on around him, but he doesn’t engage. He wants to do exercises to “get stronger.” So, we’re doing them now. Range of motion, some weight bearing, some sitting. He hates being in bed in front of the TV but it was what he was doing before he got so sick. Not all, but some, He rarely left the house except for every two weeks on a scooter to help at a food bank and perhaps to church on Sunday. He would drive out with us on Thursdays to go to the grocery store. Prior to this, he couldn’t walk downstairs without hugging the wall, and he was out of breath when he did. He struggled to stand in that shower. He was struggling to do anything on the computer due to his eye sight. In essence, denial has made this part difficult. Denial that things were happening to him. Denial that he was fading in abilities. Rather than be forward-thinking to all the next steps, to not be controlled by this, he turned his back on the actual pieces that needed to be done. At some level, he realizes all this is happening but…but…but… Yeah. He’s accused me of trying to keep him invalid. I think that deck was stacked long ago. Remember what I said about keep moving and don’t succumb to the wheel chair? One of his regrets was “not getting his knee done sooner.” Another is not getting the other knee done. Perhaps, then, maybe, he would have moved more.

I feel very guilty for thinking these things. They are reminders to me of what not to do; and I do know that at 85, he cannot affect any different course in life. I know this. Not that it’s within my purview anyway…he chose this life and these actions. He’s a good man, though, and he wants to do what’s “right.” So, I am quiet and doing the needful to get through. That’s what I’m doing and it sounds horrid. Sometimes, it’s just getting through. Please don’t judge me, it’s just the tried talking. Mostly, I’m glad someone is here with him. I did talk with Cindy, Doyle’s sister, last night. It helped knowing that their mother went through very similar things. It helped to laugh.

There is a lot I don’t know. There’s a lot know that I know that I should probably not know. This makes me want to never have regrets and, for the most part, I don’t think I do. Yet. Maybe you don’t have regrets until the time runs out. Right now, for me, the days run into nights and into days again. This could go on for weeks or months, because we don’t know anything. It’s a waiting game for all of us, and of course it’s hardest on him. I hope for his sake it won’t be drawn on. I hope for fast. I hope for peace, and grace, and dreams that make him happy. Maybe all that for me, too. Selfish, I know. Perhaps this work teaches the caregiver how to die. Doyle said earlier that he wasn’t sure that I was supposed to learn anything from this. I disagreed. I said if nothing else, it will be a bright highlighter over the words don’t regret in all my diaries. I’ve had to become his world to be there beside him, and I think that’s the most challenging thing for me. This isn’t my world. This isn’t what I choose for myself. This isn’t how I live, eat, think, sleep, or am. I’ve worked hard to be different, to break out, to choose my own path and to have freedom from the chains of the past. It’s like reliving those breakout pains over again. No wonder I’m tired. No wonder we clash at times.

I hate to see him suffer mentally, emotionally, and physically. But, in all things, I cannot do anything for him except be there when he chooses to open up. As one dear friend said, “you have to harden your heart at moments, otherwise, you go crazy.” She’s right. Sometimes I have to retreat and know that there is nothing more I can do as a person. My “ground zero” team knows this and they hold me with strong arms, firm words, and reality soup. My sister, Doyle, Michael, Magdalena. A few more have slipped into the inner circle and maybe I need to make it grow. Cindy. Justin. Katie. Jeff. I hope everyone can stay patient as I figure this out. Doyle came up yesterday, took me out to French food (mmmmmmm, my favorite) and a used book store (mmmmmmm, my favorite), and just held my hand and let me hug him (seriously, my favorite.) We’ve been to a coffee shop to talk cats, house, his work, and write. Yes, friends, I am “taking care of myself” as I can. I am conscious of all I need to do, so, again, please be patient. These words here are just words to get out on ‘paper’ as I go through this. I promise you I will ask for help as I need it. And yes, it’s coming. Dad wants to plan a yard said, and I will need help. Look for an invite soon. The reasons are complicated. And filled with “should have’s…” And, like anything, it will just take time to unravel. Nothing says “letting go” like a big old garage sale, eh?

~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.