There are days I just don’t want to decide what’s for dinner.

Don’t get me wrong, this isn’t because I can’t make a decision. I’m actually very good at making decisions and do so all the time regarding Robert, regarding my home and family and at my Day Job.

I do my research, weigh the options and have been known to write a “pro/con list” a time or two. I can make a quick, reasoned decision if the situation calls for it or I can take my time gathering information and thinking it over.

Unfortunately, I have a terrible habit of second guessing myself and by “terrible” I mean oftentimes it eats me up.  There cannot be enough Tagamet in my house.

There are important decisions involving Robert that I want to be sure I get right: what Home should I pick for him? Should Robert live with me and my family? Maybe he should. This would involve substantial remodeling to my home or selling our home and buying one with a downstairs bedroom (which, I don’t know if you’ve heard, but it’s kind of a bad market right now). Do we want to go through the remodeling? Is it selfish of me not to have Robert live with me?

There was an important decision regarding my Dad last year when he was dying. He ignored his doctor (and me) for months. He was flat out told “you need to go on dialysis or you will die in six months.” Six months after hearing this from his doctor, he still refused dialysis. He refused to listen to me or my Other Brother. He landed in the emergency room, incoherent and with his electrolytes off the charts. Everyone at the hospital (and I do mean everyone) said in one way or another that he should not be alive. That they had never seen someone actually still alive with such high electrolyte values. I get it, people. He’s in bad shape.

“Do you want to put him on dialysis?” Oh, crap. Really? I have to decide this after months of Dad refusing it? He was so sick that the doctor told me it may not help; that even being on it, he may only live another week.

Dad was not in any shape to answer the question himself (although I asked him). He occasionally turned his head toward my daughter and gave her one of his “what did I get myself into this time” grins. I asked him, “Dad, do you want dialysis?” I didn’t even get a mischievous grin, I got a blank stare.

He had refused dialysis for months. Should I respect his wishes or ignore them? It seems like it would be an easy decision: respect his wishes.

The kicker is that Dad had told me a few months earlier that if he was in a coma and the doctors said he would die that day, to go ahead and do dialysis.

The doctor is standing here telling me it may not do any good. That Dad should be dead right now.

I decided (with my Other Brother) not to put him through dialysis. I decided this even with Dad’s “worst case scenario” instructions.

Two hours later, I watched as the heart monitor jumped around and then settled into a flat line.

Did I make the right decision? I still don’t know. I still question whether or not that was the right decision.

So, yeah, I can make the tough decisions. But sometimes, I just don’t care what we have for dinner.

Profile photo of Trish

About Trish

I am Robert’s older sister and a freelance writer and am also a full-time Legal Administrator for a wonderful law firm (no, that is not an oxymoron). I am the caregiver for my youngest brother, Robert, who has suffered from uncontrolled epilepsy his entire life. In his late-40s now, he lives with me and my husband. I have somehow managed to navigate the maze of social services and government programs available to help Robert and continue to be amazed at the amount of time and persistence that is needed to do so. Robert finds happiness in simple pleasures like doing word search puzzles and watching his favorite shows (Family Feud and Jeopardy, of course!)

9 thoughts on “Decisions

  1. Profile photo of DeniseDenise

    Hi Trish, Oh, wow!, talk about being between a rock and hard place. I am so sorry for that. In reading your post, I truly believe you made the right decision. I think you are an incredibly wise and strong person to make that decision. It seems your dad had a lot of fears and I think he was too fearful to make the decision he really wanted. You did that for him. It can be hard to understand the choices others make because they don’t seem to make sense. These choices were the right ones for your dad. And, your decision was the right one, too.

    I hope it felt better to write this out. I’m so glad you shared this with us.

    The LA Times had an article last week about those who make end-of-life decisions and the toll it takes; you can read it here.

  2. Trish

    Thank you, Denise. It did feel better to get it down on paper and to share with my friends here. I have to say that you are so insightful because my dad was very fearful (partcularly of the medical profession). I appreciate your support and comments. Thank you.

  3. Karen

    Hi Trish,

    I do understand that it is incredibly stressful to have to make these decisions.
    I can only echo what Denise has said. If he refused dialysis for months, and was fearful of the medical profession, then it seems that he really would not have done well on dialysis. I believe that you made the right, and loving, decision.

  4. Bette

    Hi Trish,
    I think we are all known to question ourselves, particularly with a decision such as the one you had with your dad.

    After reading your posts and hearing you on Table Talk, it is so apparent that you always make it a point to think through the whole situation, looking for the way to find the right solution for everyone.

    Robert is so fortunate to have you on his side, as was your dad.

  5. Profile photo of KathyKathy

    Oh Trish,

    Why is it always so easier to beat ourselves up over decisions?
    My heart is with you.
    I too am hopeful that writing this has helped relieve some of the pressures bottled up by it.
    Personally, I think you did the right thing for your father. I also think you did what he wanted.

    Robert has a great advocate, whatever decisions you need to make for him will be the right ones for him, and for you. I believe that. Your love for him shines through.

    Supper of course can be tackled by going out to eat Buffet style. Every man and woman for themselves ;-)

  6. Kristin

    The decision you made at the time came from your deepest conviction regarding the best for your dad. Please don’t second-guess it. You are brave and honorable, and your dad is blessing you for it, I am sure. Dinner, now, is another matter…that’s a toughie.

  7. Trish

    You all are so kind and supportive. I really appreciate it and, now that I’ve “let it out,” I think I can let it go. Dinner will always be a struggle (especially since I can’t get away with making “breakfast for dinner” every night!). Buffets may be the answer as Kathy suggested. :-)

  8. G-J

    Trish, I can relate to your post so well. With my brothers and Dad, the four of us had to make the end of life decision for my Mom. Even though it was the right, and really only, decision, I questioned it for a long time after she passed away. It’s hard not to second guess yourself, especially when you had to make such a difficult decision. You didn’t make the decision without careful thought and consideration and you were able to respect your father’s wishes.

    Our dinner decision is sometimes “buffeteria” where I heat all the leftovers, even those tiny amounts, and then put them all out on the counter for people to pick and choose what they want to eat.

    • Trish

      G-J, Thanks for sharing your experience. It helps to know I’m not alone with my “second guessing.” I love all the dinner ideas I’m getting! :-)


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