Siblings Caring for Parents—or Not

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”

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

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

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

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

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.

Waking up in a Foreign Land without a Map

Reader post by B.R.
Posted: March 12, 2022

I’m not going to sugarcoat any of this. I’m wide awake at 1:30 am after a dinner of Good n Plenty and turkey casserole several hours ago. My hair is matted with dry shampoo and my worry gene just shifted into overdrive.

On Valentine’s Day, I took my Mom to the hospital for a TAVR procedure. A new heart valve with an overnight stay as a precaution. They came out after surgery and said all went well. Relief. Until it wasn’t. An hour and a half later they came out again and said there had been a complication. What? They offered to let me go back to see her . . .

I passed out that day on the floor of a Tacoma hospital’s surgical recovery room. It’s not every day you see your mother being rolled out the door toward ICU after suffering a complication from heart surgery. I was not prepared for what I saw. My own heart raced, I got lightheaded, and down I went. It was my initiation.

Welcome to caregiving.

Since that evening, my Mom has spent 12 days in the ICU/PCU and I was airlifted (figuratively) from the recovery room floor and dropped without supplies into a foreign land. I don’t know the language, I haven’t the right tools, and there is no map. I’ve been blindly wandering along the side of a cliff ever since.

The first hospitalization was three nights. She was discharged home from ICU and it was too soon. Covid made the concern over staying in ICU equal to the concern of coming home.

You don’t know what you don’t know. This isn’t caregiving, it’s firefighting. Every day there are dozens of fires to be put out. Here is my list today after her second homecoming:

Did I brush my teeth?
Take my pills?
Has she had breakfast?
Did I use the gait belt?
Is her BP taken?
Should I worry?
Temperature? Normal?
What drugs get taken in the morning?
What are they?
What are they for?
Should she still take them?
Why the hell is she taking them to begin with?
Have I remembered to measure fluids?
Why are they restricted?
Is she dehydrated?
Should she be this tired?
Is there confusion?
Are there appointments today?
Should I be calling the PT?
Is today the day the nurse comes?
Was I supposed to call OT?
Is the shower safe?
Is there mail?
Is someone looking at bills?
Are the dishes done?
Did I start the laundry?
Do I have enough socks?
Does my dog miss me?
Is there any food to eat?
Do we need shopping help?
Is the diet heart-healthy?
Have we exercised?
Is the sun out?
Have the birds started nesting?
Did the hummingbird feeder freeze?
Is the furnace working?
Is she warm enough?
Did the shows get taped?
Have I forgotten anything?

How does it all get done?
Will it always be like this?

Are there tricks?
Magic?

Fires.
In a foreign land.

Send hoses and help.