Archive for May, 2009

Working on this tonight, to be shared at my Mom’s funeral this weekend

Some of my earliest memories of Mom are her washing dishes at the sink at our house in Delaware. She would wash dishes and sing. I heard my mother sing songs that I didn’t hear anywhere else. If a radio was on in our house, my father had it tuned to Orioles baseball. The music came from Mom. Years later I heard someone named Loretta Lynn and some dead guy named Hank Williams, singing Mom’s songs. They had more talent, I suppose, but they had no more heart, soul or passion than my Mom. I learned to love music from my Mom’s singing at the kitchen sink.

I learned to love books and reading from my Mom. She read to me. And she taught me how important books are. She said that if she had not married and had babies so young, if she had made different choices, she would have wanted to be a librarian. She would have wanted to be surrounded by stacks and stacks of books, instead of stacks of dishes and laundry.

I learned to laugh at myself from my Mom. As a psychotherapist now, I have to say, the value of that ability cannot be overstated. The difference between survival and defeat is often the ability to laugh at oneself.

You couldn’t be around my mother for very long without two things happening. She would feed you something, whether you wanted it or not, and she would mention the Lord. If you were having some sort of trouble, she would advise you to pray.

My mother was not as well-educated as she would like to have been, but she said a lot of very wise things that her children will always remember. She taught us, “You treat the janitor and the governor just the same, with respect.” Tony reminded me that she said, “Don’t ever take from a person anything that you can’t give back.” She was talking about someone’s reputation. She told us we were no better than anyone else, and we were no worse. She told us not to bring out candy unless we had enough to go around. She taught us the things that all good mothers teach their children: you’ll catch more flies with honey than with vinegar; if you can’t say something nice about someone, don’t say anything. She taught me that mothers will cheerfully sacrifice in order for their children to have the best. In the 60s, when schools were integrating, she taught me to get along with people who looked different from me; we used the term “colored people” then; I remember her telling me, about a little black girl that I mentioned to her, “Don’t treat her the same as everyone else; you treat her better; maybe you can help make up for the ones who are mean to her today.” As a human being, she taught me tolerance. As her daughter, she taught me to love pretty clothes and too many shoes. She taught me not to buy shoes without buying a bag to match; you’ll regret it. And no matter how bad life looks, or how bad you feel, get your bath and fix your face and smile. I teased her that her motto was “It doesn’t matter how you feel as long as you look good.” And she surely did look good. When I was a little girl, I thought my mother was as pretty as any movie star. My father thought so, too. On my wedding day he told me, with no unkindness intended, that I was pretty, but not as pretty as Nell.

I learned how to love from my mother, and I hope to some day be as good at it as she was. Not likely, though. I believe she’s been awarded her gold medals by now. If my mother loved you, like she loved her husband, children, grandchildren, and others, then you were loved beyond all reason and good sense. I can’t help but think that’s very much how Jesus loved; like Mom.

My mother was the Queen of the Second Chance. No matter what her husband, children, nieces, nephews, in-laws, out-laws did, she never wrote them off. You always got another chance. No matter what kind of fuss you had with her, you could come back the next day and get something to eat, a place to sleep. Her door and her heart stayed open all the time. We could learn a lot from her example of forgiveness.

My mother wasn’t perfect, of course. She and I got on each other’s nerves the way only mothers and daughters can. I will also say that she loved her daughters-in-law the way she loved me, which includes getting on their last nerve sometimes. That’s OK. One thing that I think has always spoken well of Mom is that even her sons’ former wives love her and continued to ask about and keep in touch with her.

Sometimes Mom didn’t know when to quit. That’s a trait most of us have inherited from her – talking, working – you name it, we’ve probably done a little or a lot too much of something. I heard about a time Mom traveled North with two of her nieces, whom she loved very much, and she talked so much they stopped and bought her a book so she’d be quiet for a while. She didn’t get the hint. She stopped chatting and started reading out loud to them!

And Mom never quite caught on to the concept of political correctness. For example, if she saw someone whose nationality or ethnic background she wondered about, she would not think twice about asking them about it. She would say, sweet as could be, “Now, honey, just what ARE you?” I would cringe, but the person would give her their answer, also sweet as could be. I guess people could tell that as politically incorrect as she was, her spirit was never malicious.

Thank you for being here to honor my mother. I hope she is pleased with the things we’ve all had to say about her as we’ve remembered her here today. If we remember to talk to Jesus regularly, and be sweet to each other, and aren’t afraid to laugh, then we will keep her memory alive. And ladies, if we always have a bag to match our shoes.


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I’ve been asked to think about my mother’s eulogy. It occurs to me that she might be a “forgivaholic.” Which, if you’re going to be any flavor of “-aholic,” is probably not among the worst you could be. I don’t think God will say to anyone, “You forgave too many times! You gave too many second chances.” That would be a pot and kettle kind of situation. I think.

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I recently sent out an email to some IRL friends with the subject line, “because I didn’t have quite enough on my plate.”

My pastor wrote back that she hoped I’d be able to feel not so much that my plate was full, but that my cup runneth over.

My Mom remains in the hospital. She is not going to get better. At least not on this planet. She is no longer eating, and her kidneys are failing. It may be hours, it may be days. I don’t think weeks are likely, but who knows?

I am attempting to help plan a funeral from 500 miles away. My crazy drug addict brother telephones regularly to curse at me and blame me for anything he can think of — the fact that my mother won’t eat, is in pain — whatever doesn’t sit well with him is somehow my fault. He routinely makes threats against me and my family. Yes, I have been in touch with law enforcement.

On Friday I took Biscuit to the vet. He’d lost a little weight, and his appetite wasn’t good, but mostly, I just had a feeling something wasn’t quite right with him. On Saturday, I learned that he was suffering from advanced diabetes, with dangerously high blood sugar levels. He was admitted to the emergency animal hospital where they would regulate his blood sugar, then send him home, after teaching us to give him twice daily insulin injections. They said he’d be there 24-48 hours.

Three days and over three thousand dollars later, Biscuit’s blood sugar is still as dangerously high. The decisions we must make regarding him are not unlike the decisions we had to make regarding my mother. What, and for how long, do we treat? With my mother, we did not consider money. Very sadly, with Biscuit, we must. The expense so far has hit us very hard. We’d put that behind us quickly, if it had helped him. But it didn’t. We are waiting to hear from his regular vet now, just what might be possible, or reasonable.

I do continue to struggle with WTF Disease/lyme. I am much improved; and still somewhat disabled by it. I remain in treatment, with monthly tests and doctor visits.

A couple of people have said that things can’t get worse. Oh, yes they can. I never think that, because I know very well there are worse things that could happen. Still, this is plenty bad. In many ways, my cup runneth over, it’s true. But it’s also true that right now, my plate is full.

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Stumbled across this video this morning, after reading a news story about this kid’s dad, watching on his laptop from Afghanistan. It’s a good prayer for Memorial Day weekend:

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I’m emailing. And phone calling. A lot. Here’s this afternoon’s emails. I put them in normal prose order, i.e., you don’t have to read them bottom to top, as you would if I’d lifted them directly from email. The woman corresponding with me is a 70-something cousin, I don’t know very well. I’d like to, though. This isn’t the first time she’s reached out to me very graciously.

Date: Wed, 20 May 2009 18:43:15 +0000
From: susie@email.addy
To: sharon; judy; linda; deane; stacey; trish
Subject: follow-up to previous email

Mom continues to refuse the feeding tube. She has talked with Mike and the doctor and appears to be competent, in the doctor’s judgment, to make that choice. She is fully aware that it will lead to her death. She says she does not want to go through any more medical procedures, does not believe she would get well. She talked with Mike about her life and her children, and she appears to be lucid.

The doctor says since she has made this decision, she will be placed under “palliative care,” and they will keep her as comfortable as possible. He said if she wants to try to eat, she can, since pneumonia won’t make a difference one way or the other. I suppose there’s a slim chance that she will somehow start swallowing again when they let her try to eat, but that’s not very likely.

It goes without saying, this is very difficult to hear.



From: Deane
To: Susie
Sent: Wed, 20 May 2009 23:29:50 +0000 (UTC)
Subject: RE: follow-up to previous email

Dear Susie,
I’m so sorry to hear of this latest set-back. This has to be heart breaking & frustrating and hard to accept for you children. I do understand your feelings and hope I can help you to understand your Mom’s. I’m not as old as your Mom but I am a sr. citizen. Mother & grand-mother. I love & value life & want to be here for my family but only if I can take care of myself & be independent. I don’t want to be a burden on my family or society. There are some things worse than death & sometimes what we have to go through is one of them. Your Mom has endured numerous illnesses, surgeries, etc. so we know she is a fighter. But when you get knocked down too many times, you get tired of fighting, & it’s harder to get back up again. I’m sure she feels like she has lived a long & full life but old age is hard, & she won’t be able to take care of herself. I have discussed this with my sister, Margaret, & cousins: Rena, Willa, Kaye, & Joan. We are all in our 70’s & 80’s. We all agree that we understand & respect what & why your Mom is making the decisions she is. I’m grateful that she is lucid & can make this difficult decision for herself. She is NOT MAKING A DECISION TO DIE. She’s just deciding not to put herself through more medical & painful procedures, to prolong her suffering that may extend her life but not an acceptable quality of life. I admire her bravery & feel that I would make the same decision if I were in her situation. I think she’s leaving it in God’s hands & not the Dr’s. Once again, I’m giving unasked for advice & hope its received as a comfort because that is my intention. Our whole family will be praying for all of you as you face the difficult days ahead.

Love, Deane
Please share this with your Brothers, if you think it might help.


From : susie
Subject : RE: follow-up to previous email
To : Deane
Wed, May 20, 2009 08:12 PM

Deane, thank you again. I do appreciate what you say here. I spent about 45 minutes on the phone this evening with my pastor, and she says the same thing. When I saw that you wrote “she is NOT MAKING A DECISION TO DIE,” I had to go back and look at my email to you, to see if I had used that expression. I didn’t, but you were absolutely right, that is the thing that has been troubling me. I needed to sit with it, and pray with it, and cry with it, for a few hours. I won’t say it’s easy to accept, but I do accept it, and I am very thankful that she is still clear enough to make the decision, and not leave it on one of her children to make it. I will pass on what you’ve said to my brothers.

Now, having said all that, you won’t believe what happened after all the papers were signed, refusing the feeding tube, and the palliative care people came in: SHE ATE HER DINNER. She is full of surprises, my Mom. Don’t let it be said that anyone has her figured out. I was laughing on the phone as Mike told me about it. He fed her the pureed applesauce, sloppy joes, and something else. She choked once, and they suctioned her, but he said she ate enough for an actual small meal. I do not know what God has in mind here. It’s a rollercoaster. I don’t dare get my hopes up that this will be a turning point; but I am thankful that she had the pleasure of tasting another meal, and her son had the honor of feeding it to her. I am grateful for your friendship, and for getting to know one another better, through this crisis.


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For the second time in three weeks, I walked up to my mother’s bedside, in a place not her home, and my heart sank. “Oh my God, this is it. She is dying.”

It’s been two weeks since my last visit, and she’s so much smaller. My strong and busy mom is a tiny, fragile thing. There are tubes and hoses where her smile, her laugh, her voice should be. I slump into the chair by her bed and stare through tears at her sleeping frame. Jif comes to my side, hand on my back. He’s alarmed, too, by the deterioration. “It’s hard to see her like this,” he affirms, voicing what I can’t.

Then her eyes flutter. I step to the bed and beckon LG to come stand beside me. “Hi, Mom. It’s Susie.” But she knew that. Her beautiful (still so beautiful) blue-gray eyes open wide. Then her mouth opens, below the nose tubes and above the trach hose, into a wide grin.

Then she sees LG. It takes a moment, because LG has grown so much. But when “Granny” recognizes her youngest granddaughter, her eyes sparkle, her grin gets even bigger, and she reaches out a bruised and swollen hand. She’s suddenly not dying anymore. Not even close. Waving to Jif, motioning toward the chairs, pointing at . . . we never did figure out what. Her mouth moved, but we heard no sound. We could lip-read “I love you,” and we could guess that I am supposed to lose weight and Jif should get a haircut . . . she was momming. She was telling people what to do. She was alive.

It’s the third hospital she’s been in, in three weeks. This is a rehab kind of place; she may be there a long while. Or maybe not. Each time she’s been moved, we’ve been asked the questions. They always go something like this: “Your mother has a DNR (do not resuscitate) order, but we need to get family consent as well. If her heart stops, do you want us to resuscitate her?” Four weeks ago, I would have said, “Hell, yes, resuscitate her.” People’s hearts stop and start all the time, and they go on living perfectly fine for years.

That was before she had the trach tube for breathing, the nasal feeding tube for nutrition, the various IVs, the other nose tube for suctioning her stomach, the urinary catheter, the colostomy bag, the open surgical wound in her abdomen that isn’t healing. She doesn’t even know she has all these things. She knows all of us, her children and her nieces and nephews. But as of 48 hours ago, she didn’t know where she was. After visiting pleasantly (as pleasantly as a newly silent person can) with my cousins, a device was placed on the trach tube to allow minimal speech. She told them she loved them, then said, “I think I need to go to the hospital now.”

Back to that question. If her heart stops . . . . I want them to stop asking us that question. I wish they would and could just take her word for what she wants. She’s the Mom; she should be in charge, not the children. This time we haven’t answered. We stall, we hide from the asker. “I have to talk with my sister and get back to you.” “Let me call my brother, as soon as he’s home from work.”

How can I say that I don’t want her heart to beat? I want it to beat forever. Her heart loved my father. That’s why we’re all here. Her heart has broken, has mended, has loved her children, her in-laws, her parents and siblings, the neighbhor kids, her sons’ ex-wives . . . it will have been on the job for 86 years this Wednesday. How can they ask us to agree to its retirement?

My brother, Mike, takes LG’s hand and starts to tease her about the midnight blue nail polish. He pulls her to the bed to show Granny. “Mom, look at this! Are you going to let your granddaughter go around looking like this?” Mom focuses on the nails and seems just the slightest bit startled. Then she smiles and her eyes twinkle. She waggles a finger at Uncle Mike, as if to say, “You leave that baby alone. She’s in style.” We know that’s what she’d say. But in the midst of her starting at the shiny blue nails and her scolding Mike, the bells and whistles sound. I think it was the pulse-oxygen monitor, loudly beeping and chirping.

The 7 of us gathered there in the tiny room for the odd little vigil/party combo laugh and tease LG some more. “Look what you did to Granny with those nails!” “Her other grandmother had the same reaction last night; she just wasn’t hooked up to the alarm bells!” Mom shakes her head to tell LG not to pay any attention to those crazy people. LG’s aunt tells her that if Granny could, she’d probably want her own nails painted that color. I reassure LG that Granny was a fashionista back in the day; always wanted to try the latest thing. I wanted LG to know that Granny was not disapproving of her; quite the opposite.

When I’ve thought about DNR orders and living wills and the like, for myself, I’ve thought, “What is the criteria for whether life is worth living?” And I’ve thought that it has to do with joy. If I can experience joy, and if my presence can somehow bring joy to people around me, then I want to stay alive.

I don’t know much about DNRs, about ventilators, quality-of-life politics, living wills. But I know that when we were teasing LG and Mom, gathered there around Mom’s hospital bed, there was joy. I know the expression in my mother’s eyes, and on her silent mouth when she first recognized LG by her bedside. That was joy. I know how I felt, as a mother, at the realization that my child’s presence resurrected my mother, if only for a moment. Just for that moment, joy.

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