Pausing for Gratitude

This morning I awoke with a heart full of gratitude. My life isn’t perfect, but as we say in my native East Tennessee, it’s “purt near” (pretty close to) that. Allow me to explain.

First, my husband and I were fortunate to be able to go on a trip to Spain for two weeks this March, something we’d been saving for for over 2 years. Our daughter has been there since September 2013, assisting teachers at an elementary school. She graduated from Millsaps College in Jackson, MS, in May 2013 with a Spanish major, a concentration in voice (in between a minor and a major; she had to give a junior and senior voice recital), and experience in theater. With all of her college activities and our financial status at the time, we were unable to work it out for her to do a study-abroad program. The one she selected was $12,000 for a semester (and that didn’t include tuition at Millsaps). We simply could not swing that financially. I told her at the time that though she was disappointed, I bet we could find a way for her to go abroad after graduation. She did a lot of investigation and discovered that for a fraction of the cost (around $2,500) she could go to Spain for an entire year with the same program that would have cost $12,000 for a semester.

Our plan was to go visit her the first year she was in Madrid. But in November 2013 my 90-year-old dad (almost 91) was diagnosed with chronic lymphocytic leukemia. We wound up moving him from Canton, NC to our home so he could be with us while undergoing treatment. He responded well to oral and IV chemo and lived with us for 13 months. When he went to the doctor in November 2014, his white blood cell count was in the normal range and the doctor used the word “remission” to describe his condition. He was scheduled for another infusion in January. Meanwhile, my husband (John) had been pushing me to find assisted living for my dad. Daddy had taken a couple of spills at our house…not serious falls that resulted in broken bones, but enough to alarm us a bit.

Ironically, we began our search for assisted living at the busiest time of year, between Thanksgiving and Christmas. Daddy had been on a waiting list for a place in Canton, NC since November 2013 (he and I had visited a few places around Halloween and he decided that he liked one of them, so he paid a deposit to be placed on the waiting list). He got two calls from the admissions director while he was in Nashville, one in November, I believe, and another in March. At that time he was not strong enough (nor had he undergone enough treatment) to make the move, so he had to decline.

In early December 2014 John and I had narrowed down our choices to three assisted living facilities in Nashville. I visited one near our church the day of our Feast of Lights (our church’s big Advent concert) dress rehearsal and went home to tell Daddy about it. He was not impressed when I told him it was a high-rise, even though it was located near my work and church and he would have had a great view of downtown Nashville.

In the meantime, John visited an assisted living center a couple of miles from our house and was impressed with it. I went one day after work to check it out, and I too was impressed. We found out a guy who had gone to our previous church was a resident of this senior living community, and he seemed pretty happy with it. I called his daughter to see how her experience of dealing with the assisted living had been, and she told me she was happy with the way they had cared for her dad. We made arrangements for John to take my dad there for lunch one weekday and let him see the senior living community.

The same day John and my dad visited this assisted living near our home, I opened my gmail and discovered and e-mail from the admissions director of the assisted living facility in Canton where my dad had originally wanted to live. I couldn’t help but think the timing was more than just coincidence. When I told my dad later that day (after inquiring about how his visit went to the assisted living near our house and receiving a halfhearted reply that it was “nice”) about the e-mail, his eyes lit up. We talked some more and decided that we would move him back to North Carolina (though I had reservations about being 5 hours away from him).

On December 26 John and I left to take Daddy back to Canton. We spent the weekend at the house where he and his wife (who’s 96 and in a nursing home) had lived since their marriage in 1994. We went to Daddy’s church, First Baptist of Canton, on Sunday. Then on Monday the 29th we moved him to his new home.

So we got back to our life in Nashville and resumed our 3rd interval of the empty nest. We have had only short times of “empty nest” since our younger child went to college in 2009 and our son graduated from college the same year. The first period was from August to December of that year; then Daniel graduated and moved back home for two years. After he moved out in January 2013 into an apartment of his own (YAY! got that young adult launched!), John and I enjoyed a few months of empty nest until Julie’s graduation from college in May. She stayed in Jackson a couple of weeks after graduation so she could participate in her church’s musical production of some big work that I have since forgotten (maybe Mendelssohn’s Elijah?). Anyway, this little chick boomeranged back to our home in late May, and she lived with us until she departed for Spain in September.

All along I’ve had big plans…to turn Julie’s room into a guest room, to invite people to come visit (we’ve never had a spare bedroom because John’s office is in Daniel’s old bedroom), to redecorate our living room, to remodel our kitchen…well, actually, I just wanted new flooring in our kitchen, but that project has grown to a remodel thanks to John’s imagination.

But those plans have had to go by the wayside, because it seems that some surprise always intrudes. In this case it was my dad’s illness. So the next interval of empty nest lasted from mid-September until the end of November, when my dad moved here and took up residence in Julie’s bedroom.

Things got interesting last September when Julie came home for a 3-week visit. We prepared her for the fact that she would not have her own bedroom. We created a makeshift bedroom in our dining room, and she dealt with that quite well. It was good for her to get to spend time with her “Pepaw” (as she & Daniel call their granddad), and her 3-week visit was just long enough.

After my dad moved back to North Carolina, I noticed that over the next few weeks I started to feel more energetic. Now this is something I really appreciate, because I have two autoimmune disorders (I am the queen of weird diseases). For about the previous year and a half, maybe longer, I had been feeling exhausted and just barely getting by thanks to naps and walking and doing yoga.

Gradually I began to sense my spirits lifting. I started walking with a new spring in my step. I spent more time looking up and out at the beauty around me. It occurred to me that a heavy burden had been lifted from my shoulders. This does not mean that everything is perfect in regard to my dad’s health or my own. But for now things are good. Daddy is 92, and I realize he probably won’t be around much longer. While we were in Spain, he had a “spell” when his legs just gave out (collapsed), and the assisted living place called me to report that he had fallen in the bathroom. Turns out he fell twice more that day. My stepsister also called the next day or so to apprise me of the situation. I worried about Daddy, I prayed for him, and I decided there wasn’t a whole lot I could do from Spain besides pray. He improved this time. He has been doing physical therapy, and he is now able to walk again. My stepsister has taken him to a new oncologist, and they are watching him (without treating him with chemo) for now. Our oncologist in Nashville (actually the nurse practitioner, who has been marvelous about supporting us over the past 16 months) said that surveillance is not a bad practice for patients with chronic lymphocytic leukemia.

I feel like I have a new lease on life right now. I am grateful to have the energy to clean house. Never thought I would appreciate that! And while John and I were in Spain, I had the energy to walk and walk…at least two days I clocked over 11,000 steps on my pedometer. I returned home to spring in Nashville, indeed a glorious sight, with redbuds, daffodils, tulips, and dogwoods in bloom. I hear birds singing outside our window, and our cat welcomed us home with extra affection. Our son, Daniel, took great care of Lily the cat (I call her Lily Bo Peep because she has a little sheep toy that she just loves) while we were gone. He is now off on an adventure of his own, a road trip to Washington, DC and Philadelphia.

I believe it’s a good practice to pause every now and then (actually, this should be a FREQUENT practice…because it does one’s heart good) to say thank you to God for this marvelous, challenging, wondrous life. Thank you, Lord. My heart is full of love and gratitude for you, especially in the wake of Easter.

Praise be to God for the glorious gifts with which he blesses us each day!

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It Is What It Is

I was originally going to title this post “Why Is It So Hard to Accept Our Parents’ Aging?” but the thought that drove me to blog today came from another issue, brought up by a conversation with a friend.

I just discovered that my friend’s husband has Parkinson’s-related dementia. Boy, does that ever bring back memories. Memories of my mom and her Parkinson’s disease. She was diagnosed in 1985 and took early retirement from her vocation as a teacher, which she had dearly loved. Two of my aunts staged an intervention over Christmas break and convinced her that she needed to retire before it became obvious to her students’ parents that she was deteriorating mentally. I think her 7th-grade students already knew something was up, because she would get in the middle of demonstrating how to work a math problem and be unable to go any further.

Yesterday I was multitasking, taking a walk as I skimmed a chapter from a book on coping with transition and loss in aging. I mused on the following passage:

“Why is it so hard for us to accept our parents’ aging? The grief for me is wrapped in the knowledge that I no longer have parents, except in name. I have become Mother’s parent. I have her power of attorney. I write her checks, reconcile her bank statements, and make decisions concerning her finances. …

“At my father’s death Mother expected others to do for her what Daddy always did. Some of this was cultural. Southern women of my mother’s age learned to be helpless and let others do for them. It was unthinkable for my mother to open a door, carry her own packages, or put on her coat without help. This was the way it was when she grew up, and the way it was in her marriage. My father enabled this behavior. He felt big and strong, and she felt cared for and protected. My parents were a set. They belonged together. Clinically we would say they were enmeshed. My father was a pessimist, my mother an optimist. I have often wondered if they were this way at the time of their marriage, or if his pessimism created her optimism, or the reverse.”*

Reading this, I thought of my friend and how she is dealing with her spouse’s dementia. That has got to be a huge challenge, even harder than caring for a parent with dementia. My heart goes out to her and her husband.

And this leads me to think of my 90-year-old dad and the many adjustments he has been forced to make over the years, caring for not only my mom but his second wife, whom he married 3 years after my mom’s death. Now he is at the point where he needs someone to assist him, though he is still sharp-minded and fiercely independent.

I have no answers, only questions and ponderings. One thought has stuck with me about dementia: When you have a family member with dementia, it’s like losing that person twice. First you lose the person you knew, and you grieve over that. Then when death comes, you grieve again. I’m still working through my grief over losing my mom when she was still relatively young (69) and I was a young mother. It’s not an easy situation, though time has softened some of the pain.

*The above passage is from page 30 of And Not One Bird Stopped Singing: Coping with Transition and Loss in Aging by Doris Moreland Jones. Copyright © 1997 by Doris Moreland Jones. All rights reserved. This book was published by Upper Room Books and is now out of print but available through amazon.com: http://amzn.to/XTMbmA

Confessions of a Worried Daughter

“How easily we forget that God designed aging! … Once you truly acknowledge that aging is part of God’s plan, you can begin to embrace it as a divine gift.”

—Missy Buchanan, Aging Faithfully

I’m trying to view aging positively, but reality is hitting hard, breathing down my neck, whispering and sometimes shouting, “Your dad is in decline. It’s time to make some decisions now—before his physical decline becomes a full-blown crisis.”

You’ve probably heard the statistics. The fastest-growing segment of the U.S. population is over 85. According to a 2011 study, the number of Americans who provide care for their aging parents has tripled since 1994. Caregiving has become one of the major concerns of our time, with the number of senior baby boomers rising exponentially and the increased longevity of our elderly population.

  • How do we care for our elderly parents while treating them with dignity and allowing them to have a say in their future?
  • How do we step in when necessary and make tough decisions, becoming almost like parents to our own parents?
  •  How do we manage this transition without losing our sanity?

I’ve been pondering these questions for some time as I think about my 90-year-old dad. Alas, I cannot come up with any simple solutions.

My dad is married, lives 5 hours away from me, and has a wife who suffers from dementia and lives in a nursing home. My stepmother is 94.

As an only child, I feel responsible for my dad’s well-being and long to be closer to him so I can check on him more often. He clings to his independence quite fiercely, still driving and only recently having acquiesced to using a cane. He lives alone in his home.

My dad with me in the Agape Garden of The Upper Room, summer 2009

Over the past decade, we’ve had many conversations about his future. At one point he was ready to move to Nashville so he could be closer to me. But he feels the pull of honoring his marriage vows.

We’ve had several health scares since Dad had quadruple bypass surgery 9 years ago. Each time he’s had surgery, I have taken time off work and traveled to North Carolina to be with him during his hospitalization and to help for a few days afterward. The last time he had general anesthesia, things did not go well, and I had to make temporary arrangements for home health care.

I am blessed and grateful that my stepsister, who lives next door to Daddy, checks in on him daily. Though she has willingly dressed wounds when I’ve had to resume my normal life in Nashville, I realize this is becoming a heavy burden for her.

I have dealt with this increasingly stressful (and guilt-inducing) situation by worrying about it constantly or psychologically distancing myself, neither of which has been a helpful coping mechanism or altered the reality we face.

So many questions plague me. Do I move Daddy to Nashville, and if so, how do I do this without strong-arming him? Does he need to move to assisted living in the facility where my stepmother resides? Would providing in-home care be a better alternative?

As I mentioned above, my dad and I have talked around these issues. Our discussions have been brief (usually due to being in the midst of a crisis) and leave me feeling unsettled.

The last time I went to be with him during and after minor surgery, I had prepared myself to address the future head-on. But somehow, after watching him sign the consent forms for surgery and sedation and being reminded that he shouldn’t make any major decisions that day, I just couldn’t in good conscience bring up the issue of “What do we do now?” Meaning, of course, what plans do we need to make to address the reality in which we find ourselves? As much as I wish, things will not just get better if we do nothing.

Me and my dad, Christmas 2011

In my head I know that I “should” not worry. But my heart tells me otherwise.

I have prayed and asked God to help me discern the best course of action. I have talked to friends in similar situations. And of course, as I always do, I have sought out books for advice and information.

One book that has been especially helpful in this journey is A Bittersweet Season: Caring for Our Aging Parents—And Ourselves by Jane Gross (Vintage Books, 2011). I was attracted to the book because Jane Gross is a New York Times journalist and an expert on elder care. She speaks from the experience of finding care for her 85-year-old mother, who was already in assisted living but suddenly was forced by a health crisis to seek alternative arrangements. Gross offers tips for working with siblings to find the best care options for elderly parents, dealing with the maze of Medicaid and Medicare, addressing financial concerns, understanding adult children’s needs and practicing self-care as we care for our parents, and much more.

As I’ve prayed, I have meditated on the following scriptures and readings:

Even before a word is on my tongue,

O LORD, you know it completely.

You hem me in, behind and before,

and lay your hand upon me.”

—Psalm 139: 1-2, 4-5 (NRSV)

“Therefore, I [Jesus] say to you, don’t worry about your life, what you’ll eat or what you’ll drink, or about your body, what you’ll wear. … Look at the birds in the sky. They don’t sow seed or harvest grain or gather crops into barns. Yet your heavenly Father feeds them. Aren’t you worth much more than they are? Who among you by worrying can add a single moment to your life? … Therefore, stop worrying about tomorrow, because tomorrow will worry about itself. Each day has enough trouble of its own.”

—Matthew 6:25-27, 34 (CEB)

“Gracious God, I thank you for the answered prayers in my life, especially …

_________________________________________. Quiet the noises in my soul and let me hear you. Be near to me in this journey. Amen.”

—Missy Buchanan, Aging Faithfully: 28 Days of Prayer

“Life is like a good book. There are countless times when we don’t have the foggiest understanding abut what’s happening. We puzzle over how the characters, the plot, themes, and episodes fit into the story. We read on, trusting that everything will make sense in the end. We believe somehow times of fear, bewilderment, and confusion will change to wonder, grace and revelation when we reach the concluding words. In the meantime, we read on. We simply show up, walk humbly with our God, and anticipate the next chapter of our life’s story.”

—Nell Noonan, Not Alone: Encouragement for Caregivers

In the meantime, I wait and pray for wisdom—sometimes not too patiently.

I also pray for those of you who provide daily care for a loved one and for those who work in senior care facilities. Your job is not easy.

I’ve had glimpses of what it takes to be a full-time caregiver. May God bless you in your caregiving journey.

May you find peace and strength, and may you feel the truth of Galatians 6:9 (CEB): “Let’s not get tired of doing good, because in time we’ll have a harvest if we don’t give up.”

Recommended Reading

Missy Buchanan, Living with Purpose in a Worn-Out Body: Spiritual Encouragement for Older Adults (Upper Room Books, 2008). While this book is written primarily for elderly adults who are in physical or mental decline, it gives adult children understanding of the emotions and daily challenges their parents are experiencing.

Trevor Hudson, The Serenity Prayer: A Simple Prayer to Enrich Your Life (Upper Room Books, 2012). A good resource to help caregivers and others accept the situation they are in, relinquish their burdens to God, and find peace even in the midst of chaos.

Nell E. Noonan, Not Alone: Encouragement for Caregivers (Upper Room Books, 2009). Written by an author who was thrust into the situation of becoming caregiver for her husband, this book of 150 devotions is Bible-based, uplifting and yet realistic about the burdens of caregivers, plus it offers inspirational stories and prayers. I gave this book to a friend caring for her mother, who had Alzheimer’s; she reports that she read it over and over, underlining and highlighting portions of it, and this book got her through many a tough day.

Nell E. Noonan, The Struggles of Caregiving: 28 Days of Prayer (Upper Room Books, 2011). Another book by Noonan that helps caregivers cope with their frustration, questions about faith, guilt, and struggles.

This blog was originally written for Upper Room Books and posted on their website in July 2012 (in two parts).

The Sweetest Thing My Husband Ever Did

I guess you could call this part 2 of my blog on “What Makes a Relationship Work?” As I write this, my husband, John, is headed to North Carolina to be with my dad and tend to his surgical site. I just returned from being with Daddy (who’s 89 and had outpatient surgery for a growth on his neck on Monday) for a few days. He’s had continuing problems with the left side of his face, starting with surgery for a melanoma back in December 2011.

I feel like the luckiest woman in the world right now. I wanted to spend more time with my dad and felt bad leaving him the day after surgery, although he was doing well.  If I’d had my “druthers,” I would have stayed for 2 or 3 more days. But here’s the deal:  our family has already planned a vacation trip to the DC area for a cousin’s wedding (leaving on June 22 and returning June 26), and at my work we are trying to get a catalog finished by the end of this month, so it’s not a good time to be away from the office for extended periods.

I’m keeping my fingers and toes crossed that the pathology results from Monday’s surgery will come back clean as a whistle. Before I got to my dad’s, all I knew was that the lump was on his neck. When I got there and saw the location of the tumor, I noticed it was directly under the site of his squamous cell carcinoma surgeries (he had to go back three times to have all of it removed until the margins were clear). Fear rose in my chest. I’m praying that the tumor is benign. Perhaps I should take consolation in the fact that the surgeon told me it looked good to his naked eye.

But this is my dad we’re talking about. John knew, without my having to ask, that I would feel better if someone from our family was with Daddy. He has a more flexible schedule now that school is out. If Daddy gets bad news, there will be a representative from our family with him.

Meanwhile, we wait. And John has definitely racked up some major “Good Hubby” points.

[Update 6/14/12: The pathology report came back with good news. Whew.]

Reflections on Caregiving

On a recent trip to North Carolina to care for my dad before and after surgery, I got a glimpse of what full-time caregivers go through every day. It’s an understatement to say that caregiving takes a lot of emotional and physical energy.

I arrived in Canton on Monday, April 11, having decided after talking with my stepsister, to accompany Daddy to his appointment with the urologist on Tuesday. Supposedly it would be a decision-making meeting, but the doctor had already decided what procedure he would perform on my dad: a button TURP (transurethral resection of the prostate) to remedy his BPH (enlarged prostate). Daddy sat quietly (perhaps cowed) during the discussion; I asked a few questions, having done my homework–I read up on the procedure and other prostate procedures on the Mayo Clinic and Cornell University websites.

The urologist mentioned that he hoped the button TURP would correct my dad’s problem, but that it might not–part of the problem might be his bladder not emptying properly. He said Daddy’s bladder walls were thickened, and the bladder wasn’t as elastic as it used to be, so urine could pool in his bladder. At that point I decided we’d heard enough; we needed to focus on getting through this surgery instead of talking about what-ifs down the road. So Daddy signed the consent forms for his surgery, and we were off to the drugstore to get an antibiotic for him to take before surgery (the doctor said he already had a urinary tract infection from wearing a catheter for two weeks).

We went to the drugstore and grocery store, and by the time we got home, Daddy was pretty tired. His arthritis affects his legs, and he can’t stand for long periods of time without hurting. I started cooking, my cure-all for stressful times. I particularly enjoy cooking for Daddy, because he’s such an appreciative audience. When I tell my husband, John, what I’ve cooked for dinner on my trips to NC, he says, “Boy, he’s eating like a king!” rather jokingly, as I do cook some of the same dishes at home when I have time.

On Wednesday we went to the hospital for Daddy’s preop bloodwork and EKG. It was a challenge to get there by 9:30 (old, arthritic bones move slowly in the morning, but we made it on time and were done by 10:00. Amazing.

Then came Thursday, the day of Daddy’s surgery. That morning he wanted to talk about where important papers were and what he wanted at his funeral. We’d sort of talked about his funeral before back when he had a quadruple bypass at age 80, but we hadn’t talked in quite as much detail. I kind of gulped a bit, thinking about the real possibility of Daddy dying.

As they wheeled him out of the hospital room toward surgery, I said, “I’ll be waiting here for you when you get back from surgery.” I wanted to hug and kiss him and tell him I loved him, but I didn’t want him to think I was entertaining the thought that he might not make it. (Besides, I tell him I love him all the time. I just squeezed his hand.)

After what seemed like forever (the surgery was scheduled for 2:45, and Daddy was brought back to the room around 4:45), the nurse and assistants wheeled him in his bed back to the hospital room. Daddy was looking around trying to make sense of it all. He didn’t say anything for a bit, and then finally he said, “I didn’t get to see the doctor. Did I really have surgery? I remember everything they said while I was waiting.”  Before long, he asked when he would get to eat (a very good sign). And he ate every bit of the meal that was brought a few minutes later.

On Friday we went home from the hospital. Daddy had not walked in the hospital except to go from his bed to the bathroom with the nurse’s help. I began to get a little panicky at the thought of getting him inside his house, which has steps leading up to the kitchen. We got out “Mr. Walker,” who became my dad’s best friend for the next several days. Daddy got  inside the house okay; I walked behind him to be sure he didn’t lose his balance and topple backward as he climbed the steps. We got him settled in his chair in the living room, and then it was time for medications. I started a list of meds and times given; it wasn’t quite as hard as after his bypass surgery, when he had more medications to keep up with. Soon after that, I went to lie down for a nap. I was exhausted after the stress of the day of surgery, then rushing to the hospital on Friday to meet with the doctor while he was on rounds (thankfully not until 8:30). I think I slept for about an hour and a half. Daddy also rested during this time.

Well, I stayed with him until Monday, and by Monday, when I felt a flash of irritation over my dad’s particularness about having things put in a certain place, I realized it was time for me to go home. (And I was very glad I’d made a point of giving myself a fun break on Wednesday, Saturday, and Sunday while I was there. One day I had “retail therapy” at my favorite store, Mast General Store in Waynesville; on Saturday I drove to a shoe outlet…had no luck but found a free wine tasting and an art gallery, so I enjoyed that; on Sunday I drove into Asheville, went to a concert by street musicians in Asheville Park, and walked around downtown a bit. I spent a grand total of $3.50 on coffee that day.)

As I drove home to Nashville, I reflected on the week of caregiving and how I’d cooked and washed dishes more than ever before…and how I’d learned to change from a leg catheter to a Foley (regular hospital size) catheter…and how tired I suddenly was. Then I realized that so many people taking care of loved ones  don’t get a break, and some care tirelessly (or not) for people who aren’t so vocal in their thanks as my dad was.

Daddy had actually said to me at one point, “Oh, I don’t deserve to be taken care of like this.” I replied, “Yes, Daddy, you deserve every bit of care that you get, because you’ve taken such good care of Mommy and Helen.” My dad has been in the challenging position of being caregiver to two spouses.

I feel grateful that I had the privilege of helping my dad. I also am grateful that my stepsister Juanita, who lives next door to my dad, checks on him every day and, along with her brother, has taken him to countless doctor visits and taken care of many little emergencies that have arisen with him over the years.

It’s really hard living 5 1/2 hours away from Daddy. I’m the only child in our family, and I wish he were here. Maybe someday he’ll get to move to Nashville. Right now Helen is in a nursing home; she turned 93 the day Daddy came home from the hospital. True to his usual habit of remembering birthdays, he’d arranged for a cake to be served in her honor at the nursing home.

So I’ve rambled long enough…I’m just very grateful that Daddy dodged the bullet this time. I think he still has a few more years left in him. As the nurse who took him to surgery remarked, “He’s a World War II veteran.” “They” just don’t make tough people like that anymore.