My father use to quote the song sung by Ella Fitzgerald Summertime from Porgy and Bess saying, “Summer time and living is easy.”
Well, that’s not been my summer. It’s been busy, stressful and less than fun. “Easy” isn’t the word I’m using.
A few weeks ago I got the call that my older brother, Billy, was taken to the hospital and that started a chain of events that still isn’t fully resolved. The diagnosis is not unexpected for a 73 year old. He had pneumonia and a stroke. Now he’s in “rehab” – the modern name for conversant hospital. He also has cerebral palsy which just makes treating him that little bit more complicated.
Somewhere along the line I went from younger brother to care giver to case manager to “health care agent” as defined in his Advanced Directive. In these days of HIPAA closing off family’s access to information on a hospitalized patient, this magic document actually requires the medical staff to call me and keep me informed. It also becomes one of those burdens I’d rather not have.
The normal first conversation with a doctor after you inform them of an Advanced Directive generally starts with the question, “Is he full code?”
It’s at that point when part of my mind detaches from my mouth and I hear myself saying, “For now, but under the terms of his advanced directive these are the conditions when I am asked to give a DNR order …”
“Full code” as in do everything to keep him alive. “DNR” as in do not resuscitate and let him die. It seemed like a good idea at the time Bill and I signed the document that I should make that choice for him when he can’t. Seemed so simple nine years ago.
Simple like those days when we were boys. Bill could walk then and had a train set and a slot car set in the garage. He was a teen, I was in grade school. I was small and could help him get wires and track setup where he couldn’t reach. We’d spend hours on summer days listening to AM radio and 60’s rock. He’d rebuild the train’s engines and I’d climb out to the middle of the plywood table to set up more track. The trains would run too fast and derail. The little slot cars would go flying around the track and sometimes into a wall. We’d laugh and have simple fun.
I remember the red three wheeled bike he rode. He’d ride to the hobby shop to get parts or the hardware store for tools while me and the other kids on the street would follow along. Sometimes we bought model cars to build or would stop by the five and dime for a candy bar.
Those were good times and living was fun and easy.
This summer is not easy. Last week I was standing over his hospital bed when he smiled and I saw that missing tooth. A tooth he lost as a teen while riding his bike and pulling neighborhood kids on skateboards. The game was you’d get on your skateboard then hold on to the basket of Billy’s three wheeler and he’d race down the sidewalk as fast as he could pedal. At the corner he’d turn right and you’d let go just before the turn and fly off the curb and into the street.
It was great fun, but as every mother said in the sixties, “It’s all fun and games until someone loses an eye.” In Bill’s case our mother would it change to: “loses a tooth.”
There was that one run when Billy missed his turn and his bike flipped over. I didn’t see what happened but I was the one sent running to get mom. I brought his bike home and could see through the kitchen window that mother was cleaning blood off his face. Mom told me to stay outside. The next day the dentist was able to put the tooth back and for many years it stayed in. A couple of decades later another dentist had to remove the tooth and he’s had a gap ever since.
These last couple of weeks I’ve spent a lot of time on the road driving to and from San Jose and sitting in hotel rooms waiting for a doctor to call. Part of me remembers those carefree days, while another part waits for more information to make another decision I don’t want to.
This week I’ll make the trip again to his bedside. I’ll talk to doctors, nurses, case managers and social workers and this time I hope to be able to say to him, “Dude, it’s summer time and the living is easy. Let’s get you home.”
I’m sorry to be so late in reading/commenting here, Andrew. Our move to the South has me woefully behind on WordPress. But I still felt it necessary to reach out. I hope there is a positive turn of events (for both of you) by now. Your accounts of a happy childhood with your brother are great to read, and I’m glad you gave your post that perspective instead of simply accounting for present events. I relate to those stories, being a younger brother of brothers myself. I only hope I don’t find myself in a similar situation as you are right now, but my age and the odds being what they are, I’m prepared to be the supportive sibling where needed. All the best.
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The good news is that Bill came home last Friday. He’s doing better.
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Praying for both of you, Andrew. It seems being a good brother (and you are) sometimes means doing what you never expected to have to do.
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That is how it works – you just never know what you’ll need to do.
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Oh Andrew…I’ve been pretty much (like totally) off the blogging grid of late and am just now trying to get caught up. I’m sorry your brother has been going through such a difficult health crisis on top of his CP. He is so incredibly blessed to have such a loving, caring brother in you. I loved reading your memories of growing up with him – it made my cynical heart feel all warm and fuzzy… Except for the blood and missing tooth parts. My siblings are 6 and 12 years older than me, so I don’t have those types of memories. Prayers for his healing and for wisdom for you as you work with this health care team toward the most favorable outcome for him. And safe travels for you!
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I’m off to see him again soon and I hope this time I’ll be getting better news.
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So precious, this story, at moments I was sure I could hear your voices and laughter, and then my own brothers mixed in from days gone by. So hard, too, to see the “gap” where we want things securely in place. But your big soft heart, Reynolds, does such a good job of filling it. You are one terrific brother. I know it’s not easy, but you sure do carry it as if it were… Remember that other song, “Lean on Me”? How many people are there in our lives that we can really lean on? You’re one of those guys. ❤️
Deb
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Thanks for your kind words.
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I’m so sorry to hear about your brother. And I’m so sorry that you’re having to change your role with your brother. Taking care of a loved one in later years is a humongous burden. I haven’t been put in the role yet, but my brother is on his 2nd time around with it.
Keep on trunkin’, Andrew.
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It can take a lot, but we’re brothers so we just do it.
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Sending prayers your way for all your family.
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Praying for your brother. So many decisions to take. Thank you for sharing your memories.
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All the decisions can be overwhelming.
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All my best to both of you, Andrew. I hope he is able to go home soon.
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It’s looked better each day for that.
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Well, this is sad indeed. It’s so hard to see ourselves and our loved ones getting older and sometimes ill. Sending prayers your way. I smiled when you shared the story of the bike incident. I have a twin brother, we had an incident with a bike when we were young too. No broken tooth, but a twisted ankle from foot that got into the spokes. He was riding on the handle bars, feet dangling. MEMORIES — YES, let’s get your brother home! Looking forward to THAT post!
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I’m looking forward to writing it.
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I’ll be waiting… 🙂
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Sometimes things happen and it feels as if we can’t stop the train to get off 😦 Living for me is all about the memories.
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Memories are important.
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They sure are.
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What a terrible, stressful time – sending you and Bill and your family best wishes for strength and healing.
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It is stressful. Thanks for you kind thoughts.
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So sorry your going through this Andrew. Hoping your brother gets to be released soon and he can go home. Well wishes
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Thank you.
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Hugs and prayers…
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Thank you.
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Gosh, I sure hope he can go home. Lifting him (and you) up in my prayers. This getting older gig isn’t fun, is it?
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This getting older isn’t exactly the fun I was expecting in retirement. I’m hopeful we’ll get him home soon.
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Someone commented how well you segued between the childhood memories and the now. I emphasize that praise. An older cousin of mine just reached out to me saying I hope your “each day” is better than the last one. We hold to our faith and look to find the beauty in our life’s situations. Praying for your ability to find each day’s beauty. Keep your heart where your hope is.
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When it comes to brothers, past and present are the same and must be said at the same time.
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Prayers and lots of healing wishes! This post moved me to tears.
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Thank you for the prayers, he can use all he gets.
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What keeps us busy as we get older. I am so happy Bill has you there to help.
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There are times I’d like to be busy with other things, but family always comes first.
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Aw :-(… praying for Billy. Hang in there. Life remains life every single day.
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Thank you for the prayers.
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Praying for you both at this difficult stage of life.
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Thank you – prayers are what we need most right now.
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That is a very moving blog post. I really hope that everything goes your way in this, but don’t forget that both you and your wife have a good claim to some easy living of your own as you come to the autumn of your years.
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We do get some easy living. These things are just temporary.
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Oh, Andrew, life is so much harder when we are older. I have spent so much time in hospitals with both my sons. One is fine now and the other improves and then takes a step backwards [we are in a backwards phase now]. I wish all the very best to you in dealing with your ill brother. Hugs.
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It’s never easy to deal with illness and hospitals. We have hopes, but all to often reality falls short and we wonder if we have the strength to walk through the door one more time.
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My thoughts are with you and your brother, Andrew.
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Thank you.
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Very well done, particularly the transition to the childhood memories. The best to you and your brother .
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The now and the then are always intertwined when dealing with a brother. No matter what is going on now, you can’t help of thinking of the times back then.
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I hope so too, Andrew.
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I’m cautiously optimistic.
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