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.