Tag: Unpaid caregiving

Each member of Sound Generations’ Caregiver Support Program is or has been a caregiver to an older adult or adult child, creating a valuable shared experience among Advocates and those who seek their assistance. In this ongoing series—The Heart of Caregiving—our staff, volunteers and others share their personal caregiving stories and the insights learned along the way.

During This Pandemic by Daria Sawochka

During this pandemic, so much has changed. I mean, who would have thought that making the heart wrenching decision to place a loved one in a care facility would mean at worst, no contact at all or at best, highly restricted visits held in a breezy, chilly tent with minimal heat?  Yet this is where many of we caregivers find ourselves these days.

The mind, if allowed to roam freely, comes up with incredible worst case scenarios such as fixating on the debilitating isolation imposed on a loved one, or noticeable declines or the worsening of symptoms. Caregivers question prior decisions-could I have done more? Should I be doing more? What on earth can I do?

And so, we caregivers sit with our questions. Yet there are times when a different view emerges. We have moments when we realize we are doing all that can be done and are learning how to become comfortable with not knowing what’s around the next corner. Spending less time and energy trying to understand life’s mysteries can be helpful.

Then a shift happens.

My highly social Mom who has been living in an assisted living facility for a little over a year now is a case in point. She’s gone from eating all her meals in a dining room filled with other residents to eating all her meals in her apartment-alone. Recently though, staff have begun to sit with her, especially since they noticed she was eating less, not very hungry, and staying in bed far more than this little energetic Virgo had ever done in her 87yrs on earth. She’s always been a doer, a helper, and has always loved being of service to others, easily offering a hand to anyone in need.

My sister and I had established a wonderful routine, visiting separately 2-3 times each week, in Mom’s apartment.  And with Mom’s memory changes, she would always be surprised & delighted when we arrived.  We’d clean up a bit, and look around to make sure she was not out of toilet paper or other personal supplies and do her laundry.  It was a special kindness to be able to care for this woman who so devotedly cared for us throughout our live

Then visits stopped-to protect residents and staff. When one resident tested positive for covid-all residents had to remain in their apartments at all times. The emotional rollercoaster this created was unimaginable. But it also allowed for me again to practice the lesson of letting go and allowing what is. I began to stop thinking EVERYTHING was up to me and under my control.  It was either that, or lose my mind.

Then, last week, I learned something remarkable. The nurse at Mom’s place casually shared in passing that Mom has been spending time each week sitting in the nurse’s office, just hanging out. Mom has always loved to watch and listen to others. A very observant woman indeed. In fact, the nurse went on to say Mom even likes to tidy up her office a bit-which the nurse finds most helpful. And with Mom’s memory not being very reliable any longer-confidentiality certainly isn’t an issue.

I learned something else with this news. My Mom, with her dementia and physically slowing down, is still finding ways to create a fulfilling life for herself. Her kind and gentle ways make her easy to be around, easily redirected. Staff regularly smile when she’s around and seem to enjoy caring for her.

It reminds me, while I may oversee certain aspects of Mom’s care, this is still very much her journey as she continues to create a beautiful and fulfilling path for herself. Mom’s life is a gentle reminder that having purpose, being kind and being of service is truly transformative.

Each member of Sound Generations’ Caregiver Support Program is or has been a caregiver to an older adult or adult child, creating a valuable shared experience among Advocates and those who seek their assistance. In this ongoing series—The Heart of Caregiving—our staff, volunteers and others share their personal caregiving stories and the insights learned along the way.

Thriving-by Daria Sawochka

We’ve now made it around all four seasons, full circle. Mom has been living in an assisted living facility for a little over a year. What a journey this is.

Slowly, very slowly we all began to adapt, to change. I’ve actually begun to embrace “visiting” with my Mom again. We have established a wonderful new routine. I enjoy this new role of overseeing her care, looking for any gaps or unmet needs and finding ways to address them.

I am learning how to let go of trying to control everything as I did when Mom lived with me. I am mastering many lessons in working with an array of staff and administrators at her facility. I adapt when staff changes and have developed a special appreciation for my favorite people.

I began to purposefully look for the things done well by others. I try to begin any correspondence I have with staff by mentioning this first. It’s a good reminder for me, that when noticing something not being done as I was told or thinking it could be done better, there were also things going well at the same time. I would talk of my appreciation for all the staff do. When I did this, I noticed a partnership forming. Not us vs them but we. We all began to work together. We all needed one another to be successful with our overall mission of providing quality care to Mom. I had to admit to myself that I needed them. I had already tried to do it all on my own and had begun to drown. I realized Mom’s care needs are growing not shrinking at this stage of her life.

Then a worldwide pandemic hit and everything changed. Just when we caregivers thought life couldn’t get much harder, it did. Caregivers are learning you can keep a loved one at home to ensure you’ll remain in one another’s daily lives or choose placement and risk the possibility of not seeing your loved one or touching the warmth of their hand. Sometimes it’s a choice and sometimes it is a necessity. Either way, challenges remain.

This road, to say the least, has been bumpy. The place Mom resides has fared better than most at keeping Covid-19 exposures at bay, most of the time. They have had a few along the way, with a recent one resulting in a complete lockdown with no visits for over a month. Then, just this week, I got to see Mom again. The night before the visit, I woke up in the middle of the night, worrying what she’d be like. Would there be clear signs of decline? Would her memory issues have worsened? Would the cruelness of her isolation be visible to me?

We ended up having a delightful visit amidst a breezy, drizzly day under a tent that Mom thought would surely fly away at any moment. We laughed and held hands and remembered. Mom actually looked peaceful, content. I was reminded how much resilience and inner strength this woman possesses for this journey that is her life.

Driving away that day, I realized something. She was thriving without me. This truth jarred my ego a bit. I have long held the belief that no one cares for a mother like we daughters, but devoted staff come remarkably close, especially in the midst of a pandemic. Perhaps it takes a pandemic to bring out the stark and vivid reality that each of us decides what we will and will not do, and how these decisions effect not only ourselves, but the well-being and lives of others too. The staff make choices in their everyday lives that have a direct impact on the residents they care for. And when I am able to visit with Mom indoors again, I shall keep this in mind, for that is the kind of team member I am too.

Each member of Sound Generations’ Caregiver Support Program is or has been a caregiver to an older adult or adult child, creating a valuable shared experience among Advocates and those who seek their assistance. In this ongoing series—The Heart of Caregiving—our staff, volunteers and others share their personal caregiving stories and the insights learned along the way.

Survival of the Adaptable by Daria Sawochka

It seems life is always wanting us to grow.  Whether we are ready or not, does not matter.  I’ve observed this with several older relatives of mine as I witnessed their later years unfold.

I used to think, at some point in a good long life, there will be an opportunity to coast, to rest and take it easy.  Like riding a bike, you pedal hard to get up the hill, but then comes the thrill of coasting down in that wonderfully effortless way.  Sure, there are moments of coasting in one’s life, but there is truly far more pedaling than I ever imagined.

And so it is with aging. Take the person who has lived in one place for 40 or 50 years, only to come to the day when they can no longer stay there safely and need to consider other options.  Sometimes people move to be closer to family and friends.  Sometimes they move to a place that offers much needed services for the things that don’t come as easy as they used to. Finances can also dictate a needed move.

And so, at any age, we begin again. We adapt.

I am watching my Mom begin again.  After over 80 years of living with her parents and siblings, then husband and kids, she is now living in an assisted living facility.  The transition has its challenges. Feeling lonesome and lost at times, Mom wasn’t so convinced about her new home. We asked her to try. We needed her to try.

Some three weeks in, I am seeing a settling in.  A new routine is forming. New relationships are developing. 

I needed the help.  I was not thriving near the end of Mom living with me. I couldn’t keep up with her ever growing care needs and had many sleepless nights, feeling like a failure as a daughter.  You know that self-talk, “if I only could or was better.”

I am still her caregiver.  I visit several times each week.  I oversee her care, follow up with medical appointments when needed.  I too, am getting to know new people and the many staff whose eyes sparkle when they say hello. After all, their shift has just started or is just about to end.

Nothing’s perfect.  I’m not even sure if I believe in perfect anymore. I think I am embracing, “just enough.” For now, at least. But I can say that this is working.  Mom has more social time with many different and kind hearted people than she had with me.

And I get to be a daughter again.  I get to visit Mom and just be with her.  Oh sure, I am always scanning her new apartment for garbage that needs emptying, or dishes that need a quick wash and the ever present tidying up.  But it feels so very different to me now.  I have help.  I have a team of people helping to ensure Mom has quality to her life in the form of new faces who haven’t listened to her stories as often as I have or care about their inaccuracies.  Or someone else to offer their curiosity to her history or to how she came to be the woman she now is.

And I wonder, was it me all along who wasn’t ready for this change?  Was it me who resisted adapting because where would that leave me?  Would I still be needed?  Would I still matter? And what would I do with my one wild and precious life that was no longer on the back burner?

I just may be adapting too.

Each member of Sound Generations’ Caregiver Support Program is or has been a caregiver to an older adult or adult child, creating a valuable shared experience among Advocates and those who seek their assistance. In this ongoing series—The Heart of Caregiving—our staff, volunteers and others share their personal caregiving stories and the insights learned along the way.

The following story comes from staff member Daria Sawochka.

Caregiving seems to have a naturally blurring effect on the one providing the care, eroding the often flimsy boundaries that barely exist between caregiver and their charge. It can be so challenging to know where you end and the other person begins, among the myriad of endeavors that fill the life and heart of a caregiver to overflowing. I have often wondered, is it even possible to have a healthy sense of oneself while caring for another?  Or is it something that must be learned and relearned, again and again? Revealed? Then lost. Uncovered by the journey itself?

Here are some of the truths caregiving has revealed to me:

Caregivers tend to be “other” focused, tuned into the care receiver, ever anticipating the needs of others as early as we can, in our attempts to avert a crisis, or relieve suffering, pain or the loneliness of loss. We try to keep things from becoming even more out of control than they already are. In this process, I have realized one can completely lose oneself, like a glacier that slowly begins melting, then tumbles into the sea, becoming the sea itself. For me, this happened quietly and without fanfare, barely noticeable to the naked eye.

Until a certain day came when I looked around and realized, I was gone.  I was nowhere to be found, lost.  Nothing around me looked familiar anymore. When I lose something, the first thing I do is backtrack, retrace my steps in hopes of finding what was lost. I began to ask myself:  When did this happen?  When did I first notice the absence of me? I began to wonder:  Had this happened so slowly as to go unnoticed?  Or, was it something else?

Was it in the name of duty, of devotion, of love, that I willfully let go of me?  And if so, was this a price I was willing to pay? Perhaps.

Then an overwhelming emptiness came over me, much like waking up in a vacant warehouse, filled only with cobwebs and echoes of what once was. As a caregiver, I began to feel the price I had been paying.

I began to admit to myself, for the first time, this was unsustainable, unacceptable, and could not continue.  I began to ask myself:  When did I stop thriving and began to believe surviving was enough?

Very slowly and tearfully I began to realize:  The devotion is still there. The great love and caring is still there, now transformed into a new shape, a new form.  A great longing to be a daughter rose again.  I no longer wanted to solely live as a caregiver.

There was a time when I didn’t even know this was a choice, when I gladly took on Mom’s life and I folded up my own, placed it in a box and stuffed it on the top shelf in the back of my closet “for later use,” I told myself. Now it feels different to me.  I am learning to sit with two things at the same time – I love my Mom so much AND I need help with meeting her everyday needs.  One does not cancel out the other.  Both reside in my heart.

I am grateful for the help and support I receive in my life.  I certainly could not be on this journey alone.  Whether support comes from friends, family or coworkers –  or from the fabulous supportive services available in my community; I welcome them all and have come to realize they are as vital as clean air.  And my hope is that all caregivers reach out and find the priceless resources offered in their neighborhoods.

Each member of Sound Generations’ Caregiver Support Program is or has been a caregiver to an older adult or adult child, creating a valuable shared experience among Advocates and those who seek their assistance. In this ongoing series—The Heart of Caregiving—our staff, volunteers and others share their personal caregiving stories and the insights learned along the way.

The following story comes from staff member Daria Sawochka.

Mom and I were sitting out on the back porch one warm, summer evening when she began to reminisce about long ago summers. Mom is 85 now and I realize she has more life behind her than ahead. For that matter, so do I. She began to tell a story I’ve heard countless times before, but, for some reason, in this particular moment, it was different. I was different.  I was aware that there was nothing pressing. I was not in a hurry to get one last end of the day task complete.  I had nowhere to go. So I just settled into my chair, and looked at my Mom with open, curious eyes.

I watched Mom’s eyes grow more and more animated and alive as she spoke.  She was not only telling a story, she seemed to be reliving it too. I noticed she was even adding more details than usual with this particular telling. As I listened, we laughed and wondered out loud why people do what they do.  Then, as we tend to do, we chalked it up to yet another of life’s mysteries. We were okay with not knowing the why.

Later that evening, as Mom was saying goodnight and heading off to her bedroom, she paused, and looked back at me deeply and said she had a wonderful day and she appreciated me and my spouse’s kindness toward her, and all the things we do for her.  She was glad to have this new, loving home.

Researchers say reminiscing can have a positive and potentially calming effect on the storyteller and the simple act of listening, can counteract boredom and anxiety. We can use our memories to remind us of our strengths and how we have coped with similar situations in the past. In short, reminiscing can make us feel happier, more optimistic, and make us even feel closer to the people around us.

Reminiscing can also be beneficial by increasing self-esteem, helping us find meaning in life, and even combat loneliness. One study suggested that remembering allows the storyteller to reach into a reservoir of nostalgic memories and comfort oneself.  It can be a psychological resource that people can access to conjure up the evidence needed to assure themselves they have value.

So how do we cultivate “a moment worth remembering?” Consider using open ended questions such as; “Tell me about your first job.” Or, “What did you do for fun when you were a teenager?” Or, “Tell me about your wedding day.”  Try to respond in a positive, gentle manner and make comments to encourage the storyteller to continue.

Also, be a good listener by maintaining eye contact and not interrupting or correcting. Be as patient as you can with repetition and work to create a sweet space of unhurried time.  You just might create your own memory for future use.

Each member of Sound Generations’ Caregiver Support Program is or has been a caregiver to an older adult or adult child, creating a valuable shared experience among Advocates and those who seek their assistance. In this ongoing series — The Heart of Caregiving — our staff, volunteers and others share their personal caregiving stories and the insights learned along the way.

The following story comes from staff member Daria Sawochka.

Life is demanding.  It seems to challenge us at nearly every turn, no matter how long we’ve been on earth. Sometimes I feel like a little seed, safe and snug under a warm blanket of soil that does not want to push upward.  But grow I must–ready or not. After all, that is where the sweet smelling blossoms will be found.

As Mom settles into her new home, having just moved into my house, she adjusts. She is adjusting to life after Dad.  She is adjusting to not always knowing what day it is. She needs more reminders now. She cannot trust her memory as she once did.

There is also a growing sweetness as Mom tends to live more in the moment. She laughs easily, has the kindest soul and still looks for the good in people. She loves the energy of her 20 year old granddaughter and says she lifts her spirit, just by being near her.

I am adjusting too.  I have fancied myself a free & independent spirit, doing what I wanted when I wanted. Now I find myself in the role of caregiver.  I make sure Mom eats.  I make sure her clothes are clean and her bed is warm.  I make appointments for her and take her to them. I encourage her to come outside on invitingly sunny, early spring days.

I tend to my marriage.  I check in with my spouse to ensure we stay on the same page and continue to be “all in.”  We decided from the beginning that this arrangement needs to work for all three of us…win-win-win.

I keep my siblings in the loop, updating them along the way. I am one of the fortunate ones who has a brother and sister to talk things over with, and sometimes vent to.

Where will all this lead?  I have no idea.

I too, am getting daily practice in staying grounded in the present moment. Being here. Now. Breathing slowly through the challenges. After all, everything else is just a possibility, a guess, which may or may not happen. And that seems like a waste of precious energy.

What I do know is that I want Mom to feel loved and safe, because she gave that to me when I was a little girl. I have it to give and will do so for as long as I am able.

And the rest will simply have to take care of itself.

If you or someone you know could benefit from this kind of conversation, give Sound Generations a call at 206.448.3110. You can also email caregiver@soundgenerations.org. Trained staff will guide you forward to the Caregiver Support Program. We are stronger together. 

Each member of Sound Generations’ Caregiver Support Program is or has been a caregiver to an older adult or adult child, creating a valuable shared experience among Advocates and those who seek their assistance. In this ongoing series—The Heart of Caregiving—our staff, volunteers and others share their personal caregiving stories and the insights learned along the way.

The following story comes from staff member Daria Sawochka, who said, “the inspiration came from a family I am familiar with who is trying to allow life to unfold as their family constellation changes.”

“It’s been just a little over six months since her husband passed away, leaving this woman, married for sixty-two years, to figure out what comes next. It seems that for so long, she has tended to the needs of others: the kids, pets, extended family and her husband’s late life health challenges. Now, at eighty-four years-old, what does she even want? Is this even knowable? She’s not sure.

She recently got back from a two-month visit with her daughters who both live over 2,000 miles away. She thrived having company and conversation each day and started to get used to sharing meals once again. She said that being with family remedied one of her greatest challenges–too much alone time.

Her well-meaning daughters have invited her to live with them, but she is hesitant. She knows this decision will change their lives and hers. She is becoming aware that her memory is not as good as it used to be and she tires more easily these days…yet she hesitates. Weary of yet another big life change? Perhaps. But it’s more than that. If she were to move, something deep inside of her feels like she would be leaving something important behind. But what is it?

She’s the last of her family. The youngest of ten, her parents have passed away as have all of her brothers and sisters and their spouses. Her closest friends are all gone too. But what is it that’s keeping her rooted to this place? Her husband was cremated and rests in a beautiful urn near her bed. She even found a “travel urn” and took him with her on her recent visit. It’s not that. Is it a timing thing? Is it simply not time for a cross-country move? Maybe. She hasn’t even gone once around the seasons without her beloved yet.

Something seems to be telling her that this chapter of her life, in this place, is not yet finished. Not complete. There is something more to come, waiting for just the right moment to reveal itself to her. For now, she is choosing to pause and she will not be rushed. She has an instinctual belief that when the time is right, she will know. In the meantime, she lets the feelings from her trip wash over her, the feeling of loving and being loved.

“What a gift,” she says. “To have such problems of being truly wanted by her family.”

She smiles, thinking back to the countless conversations she had with her husband about their good fortune in having such great kids. And just for today, that is enough.”

If you or someone you know could benefit from this kind of conversation, give Sound Generations a call at 206.448.3110. You can also email caregiver@soundgenerations.org. Trained staff will guide you forward to the Caregiver Support Program. We are stronger together.