Tuesday, October 27, 2009

Sandwich generation still needs time for self

The term “sandwich generation” isn’t new. I was actually cleaning out my files during our last office move and found a newspaper article I’d written about the term over 20 years ago.

The experience of caring for our elders isn’t new, either, although it is becoming more and more the norm as our parents’ generation lives longer, healthier lives.

Blogger Kerri Zane recently wrote an article called “The crusty side of sandwich gen,” where she describes her experience being in the middle of what is nobody’s picnic: caring for her two teenagers, being a single mom, and helping her ailing 89 year old mother.

Her description of the challenges she faced after her father’s death are gripping: Figuring out how to do the tasks Dad always handled, while being in no way able to fill the emotional void he left behind.

“It is devastating for her and for me,” she comments, referring to watching her once “non-stop mom” now bedridden and frail.

Kerri finds a brief respite from her constant challenges during her morning workout. Kerri rightly sees these moments not only as important to her health and well-being, but truly essential to her sanity.

You might think that in 20 years those of us living in the sandwich generation might have gotten some breaks. We might have found resources, tips, ideas and technology to help us cope better.

Instead, I think perhaps our lives have gotten even busier. With cell phones and email we’re never out of touch, but that means we rarely get those precious times alone with our own thoughts. Our kids are doing more (that means more commitment from us); our parents are living longer (that means more expectations from us, too).

Like Kerri, my daily salvation comes during my walks. No phone, no conversation; just me and my thoughts. I try to notice the leaves, trees, streams; to find things in my surroundings that draw me out of myself and remind me that, indeed, life – though pretty tight here in the middle of the sandwich – is a very good thing.

Tuesday, October 20, 2009

Family caregiving brings joy with support

I’ve been a part of a neighborhood book group for several years now. We meet once a month, rotating homes, and spend a few minutes chatting about our lives, families and work before plunging into what usually turns out to be a rousing discussion of our month’s book.

All of the members are women roughly similar to me in age and life situation. Most of us are mothers or grandmothers; most of us can readily identify with the life of the family caregiver.

Last evening as we discussed John Steinbeck’s “Grapes of Wrath,” we shared stories from our parents and grandparents of the hardships of the depression. Many stories brought tears to our eyes, as we talked of parents recently lost, or parents we’re currently caring for in one way or another.

One thing we each acknowledged was the life changing experience of being a caregiver for our parents. We talked of how hard it is at first, how the role-change is awkward and unwelcome initially. We shared how, in the end, the rewards of caregiving can far exceed the challenges.

The shift in roles from child to adult, from care recipient to care provider requires each of us to find our way through sometimes challenging, unknown territory. As we support each other, sharing our stories and offering support and encouragement, the way seems less overwhelming and just a little easier to bear. Knowing we’re not alone makes all the difference in navigating our way to a place where we find joy and reward in the role of caregiving.

Monday, October 12, 2009

Family caregivers, faith and waiting

Three years ago, on a dark, late fall night, I sat in the parking lot of the ballet school waiting for my 14 year old daughter to emerge.

My phone rang, and I heard news that would change my family’s life.

“Your parents have been in an accident,” the voice said. “You need to drive to the trauma center to meet the ambulance with your mother.”

“Where’s my father?” I asked.

“He’s been taken to another hospital. You can call there and get more information.”

With that, our lives changed. I was thrown into the whirlwind of planning my father’s funeral, while trying to visit my mother as often as possible in critical care. We hosted visiting relatives, and tried to sort out tasks with siblings, all the while keeping everyone on speaking terms.

Every time I tell this story I hear similar stories from families who experienced the phone call that changed their lives.

Families whose loved one had a car accident, a heart attack, a stroke, or diagnosis of a terminal disease.

Families who got the news they never wanted to hear about the death of a young son or daughter serving overseas.

One thing I remember about those early days was the difficulty of waiting.

We waited, that night, in a “family counseling room,” my husband, daughter and I, for nearly 4 hours while the doctors tried to stabilize my mother enough for us to see her.

Then we waited, often hours at a time, for her to go through the numerous surgeries that would fix one bone after another in the weeks that followed.

We waited for a doctor to explain to us what to expect next, or a social worker to find out what resources might be available to help her.

Those moments of not knowing, of waiting for tests results or news of survival from another surgery, are some of the hardest moments of all. When we have the facts we can make a plan and start taking action.

How do we cope with the minutes, hours and sometimes days of not knowing?

This is, perhaps, time when our faith must take over. It is the time that we look deep inside and know that, whatever happens, we will face it somehow. We will find the strength to make a plan, to take a step, to continue going. Our family, our friends, our church and our beliefs will help us handle whatever is going to happen.

It’s easy to look back and think how very precious and fragile the gift of life is, but perhaps the most precious and fragile thing is the inner strength we must uncover so that when the phone rings, late on a dark, fall night, we can face the voice – and the challenge – on the other end.

Monday, October 5, 2009

Helping families keep helping

She’s been sleeping on the couch for over a year now. Her mother is in her bedroom, and her brother, who helps care for her mom, is in her guest room.

I asked her how she does it, and she says simply, “This is my mama. She wants to be with us, and we want to be with her.”

At the same time, she works full time and sleeps poorly these days.

I worry a lot about her.

I worry that one day the lack of sleep will combine with an especially tough work day, and then her mom will be just a little more difficult that evening.

I worry that my friend will snap – like I might do, in the same situation. Like more than half a million caregivers each year snap and do something they’d never dream of doing.

They become abusers of an elderly person. And despite what we read and hear about on the news, more often than not, it’s a family member who is the abuser, not a paid caregiver.

You can see how it could happen. Deprive someone of sleep, demand tasks of her that she was never trained to do, and anyone of us could reach a breaking point.

But what if we provide her with easy-to-access help in caregiving, and with some support in tasks at home?

“Just a little help would make a world of difference,” my friend says, as I tell her about training available to her online. “I want to do what my mama would want, as long as I possibly can.”

Thursday, October 1, 2009

Her name was Pearl.

Her name was Pearl. She was one of the first persons to move into our brand-new memory care community.

Pearl was gentle, warm and loving. She was in the early stages of Alzheimer’s disease, even though she was only in her early 60s. We’d frequently find her in tears, saying, “I don’t know what’s happening to me,” or “Why can’t I figure it out?”

We would hug her, and assure her that, while we couldn’t answer her questions, we would be there to help her through whatever lay ahead.

After a while, we’d simply give her a hug and a smile every time we passed her. She’d lay her head on our shoulders, put her arms around us and simply soak up the affection and support.

Her daughter, a bright, accomplished young woman, faithfully visited nearly every day. She’d often leave with tears in her eyes. We became friends, as we supported her, too.

One day, a few months into Pearl’s stay with us, her daughter asked if she could talk to me in my office.

As she shut the door behind her, she said, “You don’t know my mother.”

A little mystified, I replied, “I know that this isn’t the mom you knew growing up – the disease is changing her.”

She said, “No, you don’t understand. The entire time I was growing up my mother never once hugged me. She never once said she loved me. She never, ever simply held me on her lap.

“Now, I watch my mom, every single day, hugging you and laying her head on your shoulder while you comfort her in her disease.”

Her words broke my heart. Tears ran down her shoulder as she talked about her childhood, and her mother’s focus on high society and her career.

We talked a little about the caregiving journey. About getting to know this new person her mother was becoming, and learning to love her and relate to her in a brand new way. At the end of our conversation, we were both emotionally wrung out.

I went home that night and gave my own kids extra long hugs. I told them that I loved them, and just sat and listened a little longer than usual.

Over the years, Pearl continued to be warm, loving and funny as she progressed with the disease. Her daughter remained her faithful daily visitor, often helping with her care or simply taking her for a walk. Her story became intertwined with ours, as her needs increased and our caregiving tasks changed.

We were honored to care for Pearl to the end of her life. After she passed, as we shared the daughter’s grief and sense of loss, we also celebrated her journey with her mother, getting to know a different side of her mom at a stage in life when she least expected it. Both Pearl and her daughter learned to love – and show that love – in an openly affectionate way that was completely new to them.

I’m confident that we shared the belief that, for us all, the experience of being Pearl’s caregiver was one that added to our lives, and created joy for her as well, right to the very end.