July 12, 2005

An Episode

NOTE: I wrote the below post on Monday, July 11, at around 9:00 in the morning. Internet is down at work so I can’t post it.

An episode. What an innocuous word, episode. It might just mean that the next installment of whatever vacuous television show currently in vogue is due to be aired. Or it might mean something far worse. It might mean a sudden and unexpected incident or manifestation of deterioration.

The latter meaning is what I am referring to. Or rather, what the doctors were referring to when my grandfather was hospitalized again this weekend. The medical types attribute it to an episode. All by itself, that word means nothing. It certainly doesn’t function as a word should. It does nothing to explain or elucidate. Indeed, if anything, it invites further words, questions, demands for understanding. I suppose, as words go, it is a flag word in the medical community. By flag word, I mean a word that should stand up on the page and look like a big flag waving and telling the reader, hey, stop and inquire here.

He slumped over into his lunch on Saturday. He was confused. He has, in the last six weeks, lost 10% of his body weight. He lacked the strength, all of a sudden, to keep his head up. This from a man who played fullback on the Harvard Freshman team in the 1930's. He didn’t know where he was. He told people, when asked, that he thought he was in Texas or Boston or Norway. It’s like he’s already gone. My uncle E was with him. E is a psychiatrist and lives in California. Lots of business for shrinks in California, I gather. E is a lovely man, very bright, very compassionate. I’m glad he was there to ride herd on things.

E dined with us on Sunday night. After dinner was over, he pulled me to one side and he told me that my name appeared on certain legal documents for my grandfather. I didn’t know what he was talking about. E is my grandfather’s health care proxy and also holds his durable power of attorney. E explained that I was selected by my grandfather to be the backup on both of these documents. Upshot? If my uncle is unavailable and there is a question about whether my grandfather is to be intubated, that decision will be mine to make. When my uncle asked my grandfather if he had discussed this with me, my grandfather told him, no, but that “RP is incorruptible”. I gather that is a reference to the fact that with a durable power of attorney, I could sell his house if I wanted to.

I was and am flabbergasted. E pointed out to me that this decision by my grandfather, taken some time ago, might be regarded as very sensitive in the family and was otherwise not generally known and maybe, unless circumstances required, might be better left unknown. I couldn’t agree more. My grandfather has three children and six grandchildren. I think it would cause hard feelings if it was known that I was picked instead of, say, his other son. On the other hand, I feel immensely honored to have been so trusted by this man who I admire above all others. There isn’t much more to say about that. Except, maybe, that I am nervous about ever having to make a decision about whether, say, heroic measures should be used to preserve my grandfather’s life. We’ve never spoken about it, he and I. I wish he had initiated that conversation since he had picked me to make that decision, under certain circumstances. I wish I knew more about his wishes. Especially now, when my uncle tells me that my grandfather lacks the competence to make these decisions or to even have the conversation.

That’s not to say that he doesn’t have moments of heartrending lucidity. Saturday night, in the middle of his “episode”, he reached for my uncle’s hand and said to him, “E, it is very hard coming into this world and it is equally hard to go out of it”. I cried, just a little, when my uncle told me this. It was like the curtain got pulled back for just a moment and my grandfather was able to peer out and report back. And we were able to get a glimpse of how it is on the inside for him, said with his usual devastating understatement. He’s dying, or at least thinks he is, and in that moment communicated that he knew it. It must be a terrible thing to be able to contemplate, at a leisurely pace, your own mortality as something more than a distant philosophical construct. To lay there and review your life, weighing the good and the bad, the happy and the sad, and consider its cessation. No more kisses from children and grandchildren and great grandchildren. No more responsibility to provide, to protect, to act as pater familias, to be the head of a family.

Of course, because of the dementia, I gather that these moments are few. But I guess that while he does have them, he puts them to good use, as evidenced by his comment to my uncle.

I’m glad that we went over on Friday night with my parents and my children. Four generations in his room at the rehab facility. We gathered, at my suggestion, to celebrate Shabbat with him. My wife brought candle sticks and matches and I bought challah. He sat in his wheel chair and joined us in the prayers over the bread and the kindling of the Sabbath lights. He ate his piece of challah. My dad made him.

The eating thing, or not eating thing, according to my uncle is a combination of three things which suppress appetite: pain; pain killing medication; and depression. All of which lead to weight loss and to muscle loss. This leads to loss of mobility and makes him more suceptible to infection and less able to fight off an infection if it comes. According to my uncle, this is what could end his life.

Still, hope is not over. My mother says that while she is hopeful, she is not optimistic. She spoke to him this morning and he told her that he’s ready for this bad luck to be over. If that’s true, maybe he hasn’t given up fighting. My uncle thinks my grandfather is at the point of no return, or close to it. They are going to put in a feeding tube to bring his weight back up. If they can, and he has the will to come back, it might work. As my mother said to me this morning, if he doesn’t want to come back, they won’t be able to bring him back.

I’m glad we saw him on Friday night. I’m glad I picked up my son and held him so that he could give my grandfather a kiss goodnight. Thinking about that now, actually, is making me choke up. So, I think I’ll stop writing now.

I have my fingers crossed. I just don’t know if it will do any good.

By the way, assuming you went this far, I am not re-reading this before posting it. I don’t think I can, frankly.

Posted by Random Penseur at July 12, 2005 02:07 PM | TrackBack

The love for your grandfather and family and love of life are obviously two things which touch, influence, and motivate you.

It is obvious your grandfather loves and respects you; however, his ability to express those things has diminished. Take pride in his pride of you.

My father died in December after a protracted fight with cancer.

It is possible your grandfather can be "brought back," but prepare yourself that there is also a time to let go, even of the ones we hold most dear. There will come a time when letting go is the best thing we can do for those we love.

All my very best to you and yours.

Posted by: Christina at July 12, 2005 02:46 PM

My family is going through this with my grandmother right now and I am struck by the similarities.

I agree with Christina. Take pride in his pride. For me, it's helping me deal with the fact that I'm 1500 miles from her.

Posted by: CJ at July 12, 2005 04:05 PM

My heart to yours in this, RP.

Posted by: Jennifer at July 12, 2005 04:26 PM

I wish I had something meaningful to say. My heart goes out to you and your family.

Posted by: nic at July 12, 2005 04:44 PM

I told you, RP. The outside may not know you, but the inside will never forget you.

When the time comes, if it does, you will make the right choice. It won't be an easy choice, but it will be the right choice. Your grandfather chose well.

Posted by: Howard at July 12, 2005 05:21 PM

Hugs, thoughts and prayers to you and your family, RP.

Posted by: Wicked H at July 12, 2005 05:58 PM

thoughts are with you...all of you...

Posted by: sn at July 12, 2005 07:56 PM

Others have said it better than I in the comments, but-

I feel what you are going through, since it seems like you two were close. (Mine lived in Oklahoma most of his life, so I never really got to know him well until recently.)

My Grandfather is now 96. He is being semi-successfully cared for by my parents, my sisters and I, but he is slipping away.

For me, it's the end of an era, the passing of a well-lived life. A lot of conflicting emotions are coming to the surface as well.

You and yours will be in my prayers.

Posted by: Rob at July 12, 2005 09:31 PM

You and yours are in my thoughts and prayers.

Posted by: Mia at July 12, 2005 09:49 PM

My grandmother is 88 years old and in reasonably good health. And she still has all her marbles. Last Thanksgiving the family was together for dinner and at one point she said "Oh, it's fine, I'm ready to go at any time." I looked at her from across the table and she winked at me. We locked eyes and we both smiled. I smiled because I think I knew exactly what she meant and I think she smiled because she thought I knew what she meant.

When we get old I believe we accept our mortality in a way that a young person with more life to live just can't understand. And, so, when your grandfather said "it is very hard coming into this world and it is equally hard to go out of it,” I have to wonder what he meant. Did he mean "I don't want to die yet", or did he mean "Dammit, why wont I die and get it overwith?" It just might be the latter -- especially if there was any hint of a twinkle in his eye when he said it.

I was wondering it mattered that you are the "incorruptible" one. Perhaps he means that you're whom he trusts to spare no effort when all hope is not lost, and to accept when all hope IS lost. That when his body has decided that there is no more life for him to live that you'll keep him comfortable until it's time for him to go. He kmows he's going to die sometime soon [This week? Next year? Five years from now? Who knows?], and, I believe, he'll be at peace with that long before you are.

If it comes to it, just follow your conscience and your instincts. They're good, that's why he picked you as Uncle E's back-up.

The hardest thing for a young person to understand is death. Not because death is so complicated, but because it's so alien to our mission: Life. Sometimes, I think, the hardest thing for an old person to understand is why young people just can't live day by day as if death exists. You're grandfather is in a different frame of mind then we are. And I don't mean the dementia, I just mean the "endtimes", so t'speak. I guarentee you he's not afraid of anything but suffering. All ya gotta do is love him and all will be as it should be.

Posted by: Tuning Spork at July 12, 2005 10:22 PM

i'm so sorry this is happening to you. i wish you peace of mind.

Posted by: SeaKitty at July 12, 2005 11:21 PM

Man, RP. I'm sorry you're having to go through this. I was very close to my maternal grandfather. I'll have to do a post about him sometime.

I can tell from how you write about your grandfather that he was smart to make you his backup. I hope that you and your family can find some peace and comfort, even at this difficult time.

Posted by: JohnL at July 13, 2005 12:33 AM

This is one of those times that I really am not happy that we know each other "virutally". Because I know of no Internet acronym or ASCII picture for:

"Wordlessly opens arms for a hug."

Posted by: Margi at July 13, 2005 04:10 AM

RP, as always, we are sending our thoughts and prayers to you and all of your family. We'll be back in town in another 1.5 weeks or so, if you should need anything.

Posted by: Mandalei at July 13, 2005 08:24 AM

Thank you all, very much, for the thoughtful and kind comments. They were all appreciated, perhaps more than I can say.

Posted by: RP at July 13, 2005 10:23 AM

Your grandfather probably knew that you would do whatever he would have asked you to do if you had talked about his wishes. But how much more important is it that your grandfather trusts you to do what's right without having to be told. He trusts both your heart and your good judgment. That is an incredible compliment.

Posted by: Peggy at July 13, 2005 04:51 PM

I think Peggy nailed it. It could very well be that he trusted your opinion over his own. This reminds me of when my grampa made my Dad his health care proxy. He said "It's the most terrible honor he's ever given me."

Posted by: Jim at July 14, 2005 12:26 PM

Sorry. That should be "paid me", not "given me".

Posted by: Jim at July 14, 2005 12:26 PM

I'm glad you were able to see him and have your son give him a kiss. I think that also might mean the world to him in one of his lucid moments.

It's as someone else has already said... he trusts you, otherwise he never would have named you the backup. And that means that whatever decision you need to make, he'll be ok with. He'll have to be... but I think he will, because he chose you for a reason.

Good luck. As the Dutch would say "Sterkte" - or just "strength to you."

Posted by: Hannah at July 15, 2005 04:27 PM

You know my heart is with you.

Posted by: Elizabeth at July 18, 2005 01:09 PM
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