Caregivers—Angels at the End of Life

It is not easy when your mother dies, as mine did in early September.
I've been paralyzed in the writing department ever since. Even though she was almost 99 and I knew she would die soon, I'm sad. She wanted release, and I wanted it for her, but death is cold and difficult to fathom. I can't get over that she no longer exists. And I also can't get over that how, near the end of her life, amazing people appeared with palliative care and great big generous loving hearts, and eased her passing. 

Angel in chief at Rose Cottage Adult Foster Care, Kimber Vaccher, transferring my mom from her wheelchair to a recliner. Transfers always involved  hugs and talk and the warmth of human hearts beating inches from one another. We all need that, don't we? Right here is the essence of excellence in end-of-life care: human touch and genuine caring. What you don't see is all the difficult and emotionally draining "dirty work". Sore backs, sleepless nights, and the grief that inevitably comes when the people you've cared for die.

Aside from the grieving part, I've been muddled about what aspects of my mom's last six years—ages 92 to 98,  2008 to the present, to write about. Those were the years that she lived near me for the first time since I left  my parent's home as a young adult in the 1960s.

Here in Oregon, she became part of my every day life. I discovered how funny she was, and what a great spirit she possessed. Despite being nearly deaf and with ever-worsening vision, she was game for almost anything. It was only during her last nine months that she started to act like someone who was nearly 100 years old.

Her progression from a lively 92-year-old who ripped  through bridge and cribbage games, relished country drives, even when we got lost, and enjoyed a bloody Mary before dinner, to a sad and weary 98-year-old hospice patient, was bittersweet. It was heartbreaking to see her through so many losses. She'd been hard of hearing for years, but that worsened and she was essentially deaf and terribly isolated. Her vision also declined and she couldn't see to play cards let alone read or watch TV.

Her arthritic hands refused to perform simple tasks. The handiwork she'd done most of her life was beyond her. She had nothing to do, a torment. What is life without purpose or at least activity and entertainment? Boredom and lack of purpose is a double whammy for elderly people who were accustomed to enjoying full lives.

I visited her most days, and often found her here, alone in the dining room staring out the window. 

Enter the Caregiver Angels

Before moving into assisted living, my mom resided in an independent living "retirement home." It became clear that the activities offered were not enough to keep her occupied. I  hired caregivers to spend a few hours a day to relieve her boredom and loneliness and help her with exercise.

Our elders are so often drowning in a toxic sea of boredom, inactivity, and isolation.  It is terribly sad.  Even though I spent time with her most days, she had countless unfilled hours. I can't listen to John Prine's brilliant song "Hello In There" without tearing up. Don't listen unless you feel like having a cry.

First Angel on the Scene.  Her name was Doris. She was 80 years old. 

Doris had spent her working life as a nursing-home aide. Now caring for an aged and sick spouse, she still needed to make money. Plus she needed out of her house. She was skilled  and incredibly kind, patient, and loving. She cared for LaVone a few hours a day for about six months.

After a series of falls left my mom pretty much confined to a wheelchair, we relocated her to assisted living, Doris showed up , off and on, for THREE YEARS unbidden, with homemade goodies and to hold her hand and just be present. Did my mom care that Doris wasn't "family" and that she'd known her for  just a short time? Not at all. 

Then there were the Morrow Heights angels
in Rogue River, just a mile from my home.  Assisted living provided 24-hour care, so my days of hiring caregivers were over. Morrow Heights caregivers weren't all stellar,  but the majority was great and several stand out.

The truly caring ones recognized her boredom and agonized. Yes. they suffered as I did, seeing her staring out the window with nothing to do. Assisted living caregivers have too many "patients" and too little time.  Caregiver Gail took LaVone under her wing by wheeling her along as she traveled the halls caring for other residents. She also wheeled her to a small garden to smell  the roses on warm sunny days. Such small acts of kindness, but so meaningful.

Others followed Gail's example, and for a time, my mom was no longer consigned to spending hours alone each day.

When my mom  took to excessive napping and had trouble feeding herself, it was time to kick up the care level. She'd lost interest in most activities and seemed terribly weary.  She'd became someone who was busy dying, although I didn't recognize that on a conscious level.

So away we went, to a remarkable refuge called Rose Cottage. 

It is so odd, and I've heard this from others, that strangers appear at the interface of life and death to ease the transition. They showed up big time at Rose Cottage.

Husband PK tells the story of his father, broken and longing to die, in a New Jersey nursing home. PK's father died the day after PK flew back to Oregon,  cradled in the arms of a caregiver who came to be with him on her DAY OFF.

So little respect is afforded the people who care for our young children and our elders. Care giving compensation at both ends of life is abysmal. Most places, caregivers start at the minimum hourly wage, which, in Oregon, will be $9.25 in 2015,  a 15 cent increase.  That comes to about $1,480 a month. Try living on that after you get home from eight hours of back-breaking and emotionally taxing work. (Rose Cottage wages start higher and compensation increases more quickly.  Not sure if this is true with all foster care homes, as each is independently operated.) The cost for my mom's care at Rose Cottage was basically the same as in assisted living. Do you really want to know? $4,200 a month. (Price at both places based on level of care. My mom was at the highest level.)

The biggest difference? Unhurried personal skilled compassionate care. 

The caregiver-to-resident ratio at Rose Cottage is one to four, and often, two to four. I'm not sure what it is in assisted living facilities, but my guess is somewhere around 1 to 15 or more.

Rose Cottage is a regular house in the country that accommodates up to five  residents who need a high level of care.  The owners live on site, as do a flock of chickens and a couple sweet dogs.  It's a home, not an institution. 

But let's get real. Foster care aides may have time to sit and chat with their patients, give them manicures and read to them. But, like caregivers at all levels, they also wipe butts,  clean up smelly messes, transfer what amounts to "dead weight" from one chair to another, turn immobilized patients over in bed several times a night, clean false teeth, and feed people who can no longer feed themselves (my mom) a slurry of  Ensure, oatmeal and bananas with a spoon. 

But they do it all with patience. With supreme compassion. With the belief and knowledge that this is what the cared-for person needs and wants.

Plus they also  manage to love and speak in the ways that perhaps matter most when you're ancient and vulnerable and clinging  to what remains of your dignity and you are at their mercy. Mercy they have in abundance. They are not afraid to touch and hug and kiss. They show no revulsion at dealing with body fluids and solids, no shirking from cleaning teeth or trimming toenails.

Perhaps they're the lucky ones, to be present in the most elemental ways, as dying people transition over months or weeks or days to take the last breath and slip, finally, into whatever lies ahead. 

Pet therapy at work in Rose Cottage. My mom wasn't much of a pet person, but this resident poodle, one of three pooches, and my mom seemed a comfort to one another. Disabled and elderly herself, the dog often snuggled up on mom's chair or bed.

Death with Dignity

At Rose Cottage, the owner took a special role. She made it her mission to make my mother's last months, and especially her death, free of pain, fear, and anxiety. Despite an extremity infection, pressure sores, and mental and emotional agitation—all of which Kimber Vaccher, Rose Cottage owner, mitigated—my mother died peacefully in her sleep. It was the die-in-your-sleep death I hoped for her.

My mom had been sleeping 20 to 23 hours a day for weeks. I went for visits, but she'd be sound asleep. The day before she died, Kimber, called around 8 a.m. to say that my mom was awake and this might be my opportunity. I was there within 30 minutes and am so grateful to have had a wakeful hour to speak into her good ear.

She was unresponsive, but I hope she could hear me say that I loved her and that she was the best mother ever. What's the best mother? It's one who loves unconditionally and never leaves her child wondering if she's good enough. Really. I think that's the key.

I tried to be a good daughter and return the favor as our roles reversed at end of life.  During her last hours I stroked her papery hand and spoke love into her best ear, hoping that on some level, she'd hear and know her life had meaning.

As for the caregiver angels, their wings were pushing sweet air into the  room where death was visiting to take my mother away.

Early the next morning I got "the call." My mother was gone. Did I want to come out before the funeral home people arrived to collect the body? The body.

My mother was gone but her body remained on her death bed. I steeled myself and drove out.  It was a beautiful September morning. Rose Cottage looked like it always did, except that I knew my mother's body was in there. We're so shielded from death and dying, and seeing only the bodies that have been all fixed up at the mortuary. But my mom's body looked, well, like she was asleep. She looked just like she did the day before, the day I whispered into her ear when she was still "in there."

I spoke into her ear again, but her cheek was cool. She wasn't there. Imagine that. She'd escaped! 

Kind Kimber Vaccher with my mom's body. My mom's spirit? Gone someplace, to the heaven she believed would welcome her, or to an otherworldly ether that accommodates peaceful spirits freed at last from their wrecked bodies. Wherever you are, I am grateful that you were my mother. I thought a lot about whether to use this photo. But I think the look on Kimber's face conveys a lot about who she is. And my mother's shell? Just a shell. Empty of her. Not offensive, just real. 

This photo was taken a few months before my mom started her precipitous slide. I'm interpreting her wave  and thumbs up as hello and goodbye to all the wonderful people who loved and cared for her. Especially the angels who appeared at the end to validate her existence and ease her passage. May you rest in peace, dear mother. And say hello to Dad, aunt Mick, Uncle Ken, and all the others . I'll be seeing you soon enough. 

NOTE: My mother's long life was mostly happy and productive. For more cheerful posts, here are a couple most posts:

Turning the Tables on Elderly Mom

Bragging about her as she used to brag about me, and coming to know and appreciate her even more in her nineties.

Headed for Africa! Sorry Mom

About the decision to leave the country for a few weeks of adventure travel with my husband. Dealing with being torn, at times, between  my  mom and my marriage.