Thursday, April 08, 2021

I'm not reaching out this time

Ever since my friend Henry came home after his initial hospital stay -- the result of a terrible accident that left him in a coma -- I have been frustrated and scared. Because neither he nor his husband, Reg, have received the care and therapy they so desperately need.

 

Henry should have received occupational therapy or perhaps cognitive behavioral therapy. He has sustained substantial damage to his frontal lobe. He has trouble reasoning. He knows this and is trying to make sense of it, and he can't. This leaves him irritable and paranoid, and he forever sees himself at the mercy of dark forces. He needs help navigating his world. He needs to learn to control his anger, to reinterpret the distorted signals his injured brain picks up. 

 

He has never received this care.

 

There was so much emphasis on getting him back from the hospital in Miami and home to Key West that it was not a priority. Since he has been home, he's been under the regular care of a family medicine specialist. No, it doesn't make sense. Henry should be consulting a neurologist regularly, one who can get him the therapy he needs. 

 

First, this didn't happen because we were all joining Henry in the fiction that he didn't have a brain injury. I never thought this was the wisest course of action, but Reg did. Reg believed that once Henry accepted the brain injury on his own, it could be treated. I think that was a bad choice, but it was one made from love. I have always respected Reg's role as primary caregiver and have kept my mouth shut. To be honest, I would have re-enforced that diagnosis from the moment Henry came out of the coma, thereby normalizing it. But Reg wanted domestic tranquility and believed more in the power of peace than intervention. OK, what's done is done.

 

But it's now spring 2021, and all so nearly three years have gone by. Three years of Henry trying to do his much-loved job at the library, and failing. Three years of him lashing out at coworkers and patrons. Three years of the County he works for trying to figure out how to make the unworkable work.

 

Reg should have received support as a caregiver. It's not a talent, it's a skill. He's never learned it. He won't. I've recommended online support groups. His old friend Patrick has researched local Key West psychologists who have experience in this -- after all, many partners and parents in Key West have nursed loved ones through AIDS, and Florida has an aging retirement population. Reg won't do it. Patrick thinks it's because he doesn't want to confront his own drinking. I suspect there are issues from his past he's afraid will come up (I know Reg was sexually abused as a child).

 

Instead, Reg stubbornly insists on handling Henry's care by himself. He's not good at it. He likes to remind all of us (in Facebook posts) that he has cut Henry's hair and nails, changed his catheter, and nursed him through seizures. True. Laudable. 

 

But he's short-tempered with Henry. He's positively operatic on Facebook, leaving long and rambling posts that violate his husband's privacy. He seems to live for the likes and heart icons of his followers. This is human, I suppose. But it's insufficient and a fucking waste. He needs real support, real care from professionals who are learned though not loving. It's available. He won't take it.

 

I have been afraid of two things. One is Key West hurricane season. Their home is not built to standards so if they are in the path of a storm, they'll have to evacuate. Before the accident, the last time evacuation was required, Henry and Reg joined friends of Henry's in a big, sturdy house. Three couples in the same home. Today, Henry is irritable, paranoid and argumentative under the best circumstances. This ramifications of this terrify me. I can see an angry Henry running out of the house and into the storm.


The second is that Henry will lose his job. He'll never get another, not in his condition. Reg is an independent bookkeeper and a bartender -- he works hard but all their benefits come from Henry's job. Plus, Henry needs the stability, the routine and the identity he gets from being a library assistant. 


On Monday, Henry was placed on administrative leave. He argues with the patrons. His bosses say he is unreasonable. He says the patrons marginalize him because he is a gay brown man in Trump's America. He is wrong, of course. Do I believe the MAGA crowd is racist and homophobic? Well, they voted for a man who is. Do I believe they are Key West residents who frequent the library? Of course not.


Reg is furious. The county won't discuss Henry's employment dispute with him. Of course they won't. The people who complained about Henry have rights. I know this, I've been a boss and understand a little something of employment law. I could help. I could recommend that Henry (not Reg) request copies of the terms of his administrative leave. Maybe we could work on a plan that could satisfy the county and get Henry back behind the desk at the library.


But Reg is unreasonable. He wants to complain (and I appreciate how much he's hurting) but I don't want to listen. I don't want to hear how three years ago he shaved Henry's face and cut his nails and changed his catheter. I want to hear about the neurologist who is scanning Henry's brain for changes and prescribing medication accordingly, the therapist who is teaching Henry coping skills, the support group where Reg is gaining insights from other caregivers.


It's Thursday. Henry has not phoned me himself yet. And I'm not reaching out to him. Not this time. They are about to lose their health benefits and possibly their home (they need two incomes to make the mortgage and who is going to hire Henry now). I can't help them. I don't have a pot of money under my bed. I am 63. I am making the money now that will support me through retirement.


Lest you think I sound selfish, consider this: A week ago Tuesday,  Henry had a tooth pulled. As soon as the procedure was scheduled, he called me to tell me how frightened he was. I sent him a get well card  filled with turtles -- Henry and I have visited the Key West Turtle Cannery Museum -- and a $25 Walgreens gift card to pay for his antibiotics. Neither Henry nor Reg acknowledged it.


They're too into their own pain, their own drama, their own sturm und drang to appreciate what I can do to support them. 


I love these men. I do. They are good people in a terrible situation. But they have willingly taken it from terrible to impossible, and I am learning my own limitations. I cannot help them anymore. They have to help themselves ... somehow.

 

There's a quote from the Old Testament I would to like to share with them:

The Lord said, "I know the plans I have for you. Plans to prosper you and not to harm you, plans to give you hope and a future." 

 

It's my prayer for them. It doesn't have to be this way for them. God doesn't intend for it to be this way. They have made it this way. I pray they find their way out. 

 


 

5 comments:

  1. 100% agree with you.

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  2. Oh, gal, this was so hard to read. My heart goes out to you...as a "helper" and a nurse, it is so hard for me when people won't or can't listen or get themselves out of a situation. There are so many great brain injury programs out there, and it's just terrible that your dear friends are so stuck that they can't find a way to a better place. There's a thing in al-anon called "detaching with love" and I think that's what you are doing. And it's ok. And good for you. Thinking about you.

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  3. I am really sorry to read this. I know you care for these fellows very much, but you have to take care of yourself. I didn't think anything you wrote sounded selfish. I could read your concern for them in your words. You have a good heart, but some things are beyond your control. It sounds like this is one of them. Take care.

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  4. I am proud of you for keeping your boundaries. Your love for and friendshp with Henry and Reg need them. This is a difficult situation all the way around. Sending love to all of you.

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  5. It's so hard to watch loved ones in a state of trauma who can't / won't ask for help. And it's equally hard to struggle with your own feelings which can include anger, helplessness, and concern.

    The question I use in situations where I feel helpless is this: "What is mine to do here?" because it helps me refocus on what I can and cannot do and what is needed (or not) from me.

    Seems to me you are doing and have done all that is yours to do throughout this entire ordeal. And that is all you can do, Gal. That is all you can do.

    Continue to send love and prayers (and the occasional gift card when you feel called to do so) and allow them to live their life as they choose, hard as that may be.

    Sending you so much love.

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