Taking Care of Business . . . and Yourself

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A reader’s story reminds us of the importance of getting legal and medical powers of attorney (along with end-of-life wishes) in place while your loved one is mentally able to consider and sign the orders. And, when things change, to take care of yourself.

FINANCIAL MANAGEMENT. By the time I decided that Dad could not live on his own, it was too late to put Medical and Financial Powers of Attorney in place. I had to go through the process of becoming my dad’s court-appointed guardian. Families should look at the financial and medical powers of attorney as much as a will, living will, or trust account. Dad would have been willing to let his children have those powers but we just were too slow in getting something in place. I had a full-time job, lived over two hours away, and visited two weekends a month until I realized dad needed more care. By then, he clearly would not have been able to sign the legal documents needed (in good conscience on my part).  Take care of the finances, discuss them openly, and be prepared for push back. My siblings were very willing to let me take charge and live with dad as long as their inheritance was not touched. It became clear it was an important factor as I asked them about paid care for dad. None of them were willing (or able) to bear those costs, but didn’t want to give up their “stake” in the estate.

SELF CARE.  I could not cope with the stress of taking care of dad, managing his affairs, managing my own affairs, and working part-time to keep myself sane. I ended up going to my own primary care physician and getting a prescription for an antidepressant. Then a stronger one, then a stronger one. I stopped eating, went to town only for groceries or doctor appointments, and was isolated. I wouldn’t answer calls or texts from friends; I barely communicated with my children. I needed help with dad and, even though I am a reasonably intelligent woman, I could not dig myself out. Dad’s death was my release. I tried to find resources to help with Dad, but there just isn’t much in my county. What there is takes forever to book an appointment. Families need to build a good support network and not be afraid to ask for help and have back-up care regularly scheduled as well as for emergencies. I didn’t have those resources and they are essential.

Sonja S.

Senior Move Managers Moved My Parents . . . and It Was Magic!

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by Bonnie Rae Nygren

My parents recently moved into a vibrant retirement community near where I live. It wasn’t a move dictated by crisis, but rather an act of love for themselves and our family. I don’t want to make it sound easy or without some measure of angst. It definitely wasn’t that. It was a lot of work and a lot of feelings and a lot of decisions all crammed into about six weeks. Their home of nearly twenty years contained sixty-five years worth of memories. We spent hours and days, sorting through both the priceless and useless things that we found in closets, drawers, and cabinets. A move into a space half the size required a lot of tough decisions.

The couple of weeks before the actual move were chaotic. What to take, what to donate, what to gift, what to sell . . . what to throw away. It became a jumble of second guesses and gut-punches. The only thing that was certain was that this felt like the exact right time to do it. They got to make choices and they got to be intimately involved in the process. Others are not so lucky. Those who allow “no decision” to become “the decision” are left with little control over even the smallest choices. I did not want that for my parents.

Nothing was taken lightly. It wasn’t just what sheets and towels and dishes to take. It was a lot of trips down memory lane. Old photos in ancient frames, books, letters . . . so many stories attached to so many things. I’m so glad we took the time to do it right.

When it came to the actual move it felt overwhelming. It took weeks to whittle down their choices. The thought of packing it all up was exhausting to even think about. The woman we were working with in the retirement community recommended a mover to us. She said she specialized in senior moves and the service they provided went “above and beyond.”

We met with Rebecca the following week.

And we were blown away.

RR Move Co., “senior move managers,” was like hiring a team of magicians. What this business offered was unlike anything I’d ever heard of. It sounded too good to be true. They provided help in the form of packing up every item in every room, hiring a team of physical movers for the big stuff, and then unpacking and decorating on the other end.

What? Unpacking and decorating?! Seriously?

Rebecca promised a smooth two-day move, at the end of which my parents would walk into a completely unpacked and decorated home. I was gobsmacked at the possibility. She and her team were wonderful with my folks and pulled off this move flawlessly.

They had done a walk-through previously to get a sense of furniture and other items to be moved. They took photos of how things were in drawers and closets and cabinets. They talked with my folks to get to know a little about them. On Day One of the move, we left them to pack up everything that was going, stage the large items, remove shelves, etc. Day Two was the moving truck and getting everything over to the new place.

I still don’t know how Rebecca and her team pulled it off. It was like magic at the end of the day to walk into their new home. No boxes, no packing material, no chaos. Shelves were hung, the bed was made, drawers and cabinets were populated. Pictures were hung, treasures were on display, and a there was a beautiful gallery wall of old photos in their bedroom. Even the refrigerator held everything just as it was arranged at their home.

My Mom is still emotional when she thinks of that day. It’s magic, I’m telling you! “Editing” was a luxury. Being free of the chaos was priceless. I know this was a hard move to make in many ways but the end result was a great comfort to everyone concerned. I’m so happy for them to be in a comfortable safe place and I think they are ultimately glad for the decision to make a move while they could control so much of the process.

For more information about senior move managers or to find one near you, visit www.nasmm.org

To read Bonnie Rae Nygren’s blog, visit www.insearchofthevery.com

What We Leave Behind

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What do we do with the stuff our parents left behind? And what about our own stuff? A year ago I wrote a post on this website about cleaning out my parents’ house of more than fifty years (a condensed digest of an ongoing series on my other blog). I’m still at it. Because I’m living in the house, there’s no sense of urgency. And yet, as I consider options for what’s next for me, I’m held back by all the minutia that isn’t mine, from an overstock of paper clips to an antique organ, from nuts and nails to my father’s enormous desk.

A friend wrote about cleaning out her mother’s house after she died—that generation of savers, oh my—and of the saved bits and pieces of her own life.I often write the word “excavations” on my “things to do” list, or a I use this phrase “I am a miner” to inspire my efforts. I couldn’t help be fascinated (and somewhat repelled) by all the little boxes, jars and containers full of doodads, screws, & miscellaneous parts that your family saved. I went through the same thing too at my mom’s. She had saved dozens of snus (snuff) cans from her father, filled with every screw, nail, bolt, curtain hanger, drape hook, and carpet tack of his, as well as my dad’s stuff in baby food jars, cat food cans (the last cat died in 1966) and cigar boxes (his father smoked cigars, and he always brought home empty ones from “The Club”). But, I think maybe I had it somewhat easier going through some of those things compared to what you are faced with now, because my mom moved to a different house twenty years ago, and she was an obsessive organizer and labeler (probably the librarian thing).

Now I’m making myself face the harder stuff, things with family memories. I whittled four boxes of antique piano music from my grandmother down to one. Some of it was so old and shabby, I had to throw it out, but I took two boxes of it to local antique/collectible shops. But I can’t keep it all and I tell myself “four minus three equals one—at least I’m trying.” [Then I set to working] on a list of books (about theater and the New York stage) to offer my local theater company. I have saved six books for myself and I hope that they will accept about sixteen. My mom loved the theater.

On the horizon, waiting for me, are boxes and boxes of 78 rpm records. That may be a challenge. The thrift stores won’t take those. I might put them off for later. I actually remember some of those old records from when I was really little.

One of the hardest things about all of this is that I am recognizing my own hoarding instinct. I’ve saved many of the same things. It scares me to think that I might pass all of this stuff (or my own treasures) on to my daughter. But I know to a certain extent that I will. She tells me not to worry about it.

LV

Revising the “Ask” to Draw In Reluctant Siblings

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If you are the primary caregiver, you are doing a lot. You may want, even expect, your sibling to do whatever you need them to do. Unfortunately, some siblings are going to resist. They do nothing, you get (understandably) resentful, and relationships fall apart. In the story below, a reader describes how she got her sister to participate. Not everything she wanted, but it kept the family connected. Who knows, the next ask might be easier. As Jane suggests, start small! And play to their interests.

 

My brother is a family man with four children, five grandchildren, a wife, and a full time job who loves to cook and takes daily walks of several miles. Although he is busy, and doesn’t live close, we have been chatting online and by phone since my father died. I feel lucky to have his emotional support. Since the start of the Covid [pandemic], he has had weekly Zoom meetings with his family. We now add Mom on special days. Somehow it works and provides a family connection even though the technology is a complete mystery to Mom.

My sister is another kettle of fish. For years we didn’t hear from her as she became a professor, married, and did her own thing. When Mom was diagnosed with Alzheimer’s, I knew I would need all the help I could get so I decided to meet my sister on her own terms. At first, I asked her if I could call occasionally (she isn’t online) with Mom updates and if she would answer the phone. Very specific. Very small ask.

After getting updates for about six months, she began to understand how much I was doing for Mom and asked if she could help. Knowing her capacity to help was limited, I asked her if she could buy a special clock for people with Alzheimer’s that has both the time and date in big letters and numbers. She said no (loooong story, too boring to write). I bought the clock for Mom. After a month of thinking, I asked my sister for something from her world: Library Science. I asked her to send books. She immediately went into research mode. It took several more months (no surprise) before she actually sent books to Mom, but she was able to connect in a way that worked for her. She is still answering the phone, still sending books and, miraculously, Mom still loves to read.

These improved connections didn’t happen suddenly and didn’t necessarily happen in the way I might have wanted. But as time has passed, my relationships with my siblings have improved, our mom is more connected, and I have more support.

Jane W.

Siblings Caring for Parents—or Not

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Three caregivers sent their stories via the website recently, each touching on help (or not) from siblings. What is your sibling story? Do they participate or not? If so, what role do they take? Have you done anything to bring reluctant ones around? How do you cope? Send your story on the contact page here.

 

My sister gifted me your book, Mother Lode, this Christmas! When our house was finally quiet, Christmas “packed away,” I picked your book up, and could hardly put it down. I cried and laughed, hurt and rejoiced in your journey with your mother as it mirrors so much the struggles we are having with our mother (and father to some extent). I retired over 2 years ago and moved closer to my sister to help care for our “old-old” parents. They lived with me in our home across the street from my sister, until last April, when it was time for Assisted Living (our mother’s decision). They are 92 and 94, both with increasing dementia.

Your story gives me hope.
Sarah R.

 

A friend gave me your book as I have been taking care of my 94 year old mother for years. The stories about your mother are so familiar. Sadly I don’t have a “Rebecca” as my three siblings do not participate. It is endless and exhausting. Your book gives me comfort, knowing I’m not the only one. Thanks for all you did for your mother and for sharing the experience to connect to the rest of us.

Very best, Susannah H.

 

The decision to make sure Dad lived in his own home until the end was an easy decision for my siblings as none of them intended to take care of him. One sister lived four hours away and far from retirement in a job she had held for almost 30 years. Second sister lived in Florida. Brother lived across the field from my parents but was not emotionally mature enough or financially able to provide any help (and offered none). I stepped up because I was retired and financially secure. Dad’s home would had to have been sold in order for him to afford living in any type of memory care (with Alzheimer’s). He also had prostate cancer and was being treated for both that condition and dementia, high blood pressure. The home was not ready for sale and my dad was cognizant and able to take care of his personal needs in the beginning. It would have been heartbreaking and met with considerable resistance to sell the place and place him in care. My siblings were very willing to let me take charge and live with dad as long as their inheritance was not touched. It became clear it was an important factor as I asked them about paid care for dad. None of them were willing (or able) to bear those costs, but didn’t want to give up their “stake” in the estate. It was easier for me to live with him full-time.

S.S.

“NanaNana, Hey Jude”

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A story of long haul caregiving.

I finished reading Mother Lode this week amid a hail storm of memories. My mother is 96 and living with Alzheimer’s. I have been her part-time caregiver for about fifteen years. Like so many mothers of the Greatest Generation, she is a survivor. Having fought life-threatening cancer three times, starting at age seventeen, it is a miracle she is here at all. Her last battle with cancer, including CyberKnife therapy, left her frail and dying. Her oncologist said to call hospice and that she had four to six months to live. That was almost twenty years ago.

My mom’s memory loss had such slow progression we could almost believe it wasn’t happening. When paranoia and confusion started popping up, I took her to a neurologist. I was with mom each time she was given a memory test so I was able to note the changes along with her doctors. I was with her in the difficult times when she thought someone stole her purse (lost and found at Safeway), stole $50 (found hidden in a tissue at the bottom of her tool box), stole her false tooth (who steals a tooth?), stole her hearing aid (only the right one), etc, etc, etc. . .  I was there when she wandered off at night and was found sitting on a bench outside, lost and cold, in the dark. I was there for hundreds of hilarious and completely maddening “who’s on first” conversations similar to those related in Mother Lode. I was there when she when was taken to the hospital multiple times because she thought the cancer had come back. I was there and made the difficult decision to move her to memory care.

Although I didn’t live with mom, I have been on call day and night for years. Now that she is in a 24-hour memory care center, the chaos has leveled out. We both have some breathing space. Sometimes I worry about my parents’ savings being eaten up to pay for her care, but I believe that’s the best use of the money, and I feel fortunate that she can afford it. If she’s still here when the money runs out, we will figure out what to do. It can’t be harder than what we’ve already been through.

My mother calls this time she is living in now her “grace period.” I think of a grace period like a coda in a musical piece that finishes a song. “Hey Jude,” the Beatles song, has a coda that repeats “nana na na” for four minutes. Mom’s coda happened to come with Alzheimer’s and coincide with my retirement, my buying a new house, moving myself and my mom, and Covid. The last two years have been like a record stuck on “nana na na.” And just when I think I’m going totally crazy, I start singing along.

—Jane W.

Generational Caregiving

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I have just read a wonderful book titled Mother Lode – Confessions of a Reluctant Caregiver by Gretchen Staebler and I want to tell you about it.

I have been in her shoes with both my mom and dad, so I can relate to many of the things she went through. Although my parents did not have dementia, they were a challenge to care for at times. My mom died much too young at age 74 after having a stroke that paralyzed her on one side. Although at that time my dad was her primary caregiver, at age 77, I was there every day to help take care of her and help him.

My dad was another story. He had always been very independent all his life. He started having problems at about age 96, about the age Gretchen was starting her journey with her mom. I seemed to have the same “love/hate” relationship with my dad as Gretchen did with her mom at times. It was good to read that I was not alone in that feeling. It validated how I felt. My dad passed away peacefully at age 99.

I think all the insights and experiences Gretchen had and her way with words will be a comfort to all who read her book.

My husband and I are on the receiving end of the caregiving journey, where we need some care ourselves. We have 2 daughters and a son in that position now who are reading Gretchen’s book to help them navigate this journey. We are still able to do most things ourselves so far but both being in our mid-80s, there is much we are not able to do. Our health is hit and miss, so that is a challenge also.

I whole-heartedly recommend this book and hope you also will find it very helpful if you find yourself in this position. It is said that 1 in 5 people [are caring for an adult family member], so you see you are not alone.

—Beth Nygren, 85

Opening the Door to Family Conversation

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When I wrote Mother Lode, I didn’t give much thought to it being a good read for anyone other than current and future caregivers. Now that it’s out in the world, I am hearing from two other groups of readers. Those for whom caregiving is in the rear view mirror say it has helped them forgive themselves and their care recipient for not being their best selves in challenging times, re-storying their relationship into healing memories. And readers like Ray and his daughter, Bonnie Rae, report that the book has opened conversation between aging parents and their adult children about what is coming down the road and what to do now to prepare for it.
—Gretchen

I am not much of a reader, Mother Lode: Confessions of a Reluctant Caregiver is a must read for everyone, caregivers and care recipients. Most of us will either be a caregiver to our aging parents or be that aging parent, or both, in our lifetime.

My own caregiving experience is limited to supporting my wife Beth during her bout with breast cancer and her MS (Multiple Sclerosis) diagnosis. Both of my parents wound up in nursing homes. As Beth and I age, and become more dependent on our children, we have a greater appreciation for caregivers. This book provides insight into what we can expect as we age, and hopefully helps us be emotionally prepared for what lies ahead. Please consider reading this book. You will not be disappointed.
—Ray Nygren, 86

When I started talking about Mother Lode, my parents both took an interest. Intrigued, they ordered their own copy and started reading as soon as it arrived. They each had a bookmark and took turns during the day, reading. And then something remarkable happened. We started talking.

As they got deeper into the story, we had almost daily conversations about what they were reading. Gretchen’s story became the springboard for a lot of new conversation. We talked about what it was like for them to care for their parents and for each other, but then we started talking about their own experiences this past year when they each encountered a health crisis of their own. [As we navigated their need for more care], reading this book led them to a new appreciation for those of us partnering with them.

Somewhere between Gretchen’s story and their own personal story, we started talking about really important things. We talked about the kinds of care they could receive at home and the possibility that as those needs change, so might the need for a different living situation. We have had talks about downsizing and about help with errands and chores. We’ve reviewed their advanced directive and spoken about other health documents like POLST [Physician Orders for Life Sustaining Treatment] forms. Not easy or fun conversations, but another way to love one another.

The most meaningful thing about all of this is that it has helped bring us all closer together. Mother Lode is much more than a memoir. It is a doorway, a hallway, a window. Or maybe it’s a key that unlocks something beautiful.

Read it. Share it. Talk about it.

—Bonnie Rae Nygren (www.insearchofthevery.com)

Three Times a Caregiver

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From reader Vicki L.

I was a caregiver for my sister for approximately three years before she passed away in 2000 at the age of 47 from complications of diabetes. My sister lived by herself up until her death, but she was legally blind and on kidney dialysis. My mother and I took turns taking her three times a week thirty miles  from home for dialysis.

Then I was a caregiver for my father, who passed away in 2015 from Parkinson’s. My father wasn’t diagnosed with Parkinson’s until about two years before he passed away. Up until then he had been pretty self-sufficient, but we noticed him going downhill. He also had dementia, which was related to his Parkinson’s. While a lot of Parkinson’s patients get dementia, not all do.

Most recently, I helped my mother, who was quite capable of caring for herself until last fall. She was in and out of the hospital and unfortunately passed away in February of this year. She had gotten Covid while recuperating from surgery in a rehab center. She went back to the hospital where she succeeded in beating Covid, but unfortunately Covid took a huge toll on her body and she passed away.

I lived next-door to my parents from July 2007 until my mom and I moved in July 2021. We lived together until her passing. I took her on all of her errands and doctors appointments so we spent a lot of time together.

Tip: Even though I am happy that I was able to spend so much time with my loved ones, you still have to remember to take a little time for yourself. And don’t feel guilty about it.

 

Donna Knutson—Matriarchy, a poem

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we have forgotten so much of the matriarchal language

the songs of mothers rocking children to sleep
babies nursing at the breast

cotton cloth close to the skin
rhubarb pie and a dollop of ice-cream.

dinnertime conversations of remembrances
and grandma and papa

that history of gone but not forgotten.

someone said a few years ago,
“It had to end one day.”

and I murmured, why,
under my breath
and folded another kitchen towel and slid it into the third drawer down.

I have hummed for years
and even the woman with Alzheimer’s
I cared for turned to smile at me with her eyes
and the tune went on for a while longer

I have watched birds in the bath
and the rain from the skies
held animals that were dying
told lies to small children
so I could lead them astray into fairy tales
and to the god with the smile and the moon.

tonight.
I stepped further into a narrow realm
of goodness and miracles,
Of fading traditions and groups of grandmothers who gather to bless the space between – the space of here and now and not quite yet

The conversations that seem out of step and far from the core of health and home.
Why do the glaciers melt?

Who is playing ?
Who is creating?
What is time?

What happened in the 70s?
“where have all the flowers gone?”

The mamas march on.
And the white haired crones with the tribe of thousands
Carry the torch

Who drinks the water and cares for the wood?
Who kneels in reverence when Spirit calls?

I stepped further into the space of reminder
As these years go quickly
And pride is a sin – chapters are being written
Pages are being torn out.
The sun rises and the sun sets.

You really do get to choose the color of each day and the tone or the mood.

Leave the light turned on. Breathe love into the atmosphere everyday.

The matriarch is still holding the line with strength and compassion.
With wisdom and bold vision.
A beat of the drum and old eyes see the narrow path ,
worn and still visible, the ancestors gather, my mother appears
Those souls just beyond the boundary of visible/invisible

And within the veil of divine feminine
The sheer breeze of breath inhales the perfume of remembrance

I swept the patio with the fading blooms
and the breeze kept moving the branches of the trees
The land spoke of fireflies and whispers of wildflowers yet to grow near the fields to the west with the rising corn.

The candles were lit and a bow to the moon.

—Beauty, Donna

Donna Knutson is a Spiritual Director and Interfaith Minister living her home, her gardening designs, her ministry on two acres of land in Nebraska, called Sanctuary. She is the author of two books, Finding God on Mayberry Street and Finding God on Mayberry Street: A Reflective Journal. Both are available on Amazon. Donna has taught classes for years on grief, beauty, hope, and finding your true spirit inside your heart of love. She leads workshops and retreats on her land and encourages the deep dives of discovery and transformation. She can be found on Facebook at Donna Knutson-author.