Friday, August 9, 2013

It might be time...

In the caregiver support group I facilitate for our local community hospital we've had one theme lately:  there comes a time when you should not continue to be your loved ones primary caregiver.  I'm not pushing this theme or this message - the group is.  They listen to the health concerns and the sounds of despair in some of the group members and say, "You need to look for care."  Often, they're talking about an assisted living or memory care community. 

Some of our group members have found day care programs to be life savers.  They have a free afternoon - or full day - to go shopping, have lunch with a friend or simply read a book undisturbed.  It helps them revive and continue to provide care.

Others have found in home help to give them the break they need. 

Still others have said that finding a good assisted living community was the best decision they ever made.

It does boil down to this:  what's right for one person may not be right for the next.  What's right for YOU is something that only you know, and only you understand.

It's incredibly affirming to hear people who are in situations similar to you say, "Do what you need to do for YOU."  There's no judgement; no pressure.  There IS a recognition that as a caregiver, you need to take care of yourself first.  You need to care for your own health - physical and mental - so you can continue to be there for your loved one.

Good advice!

Tuesday, April 19, 2011

The Hidden Sandwich Filling

I’ve been calling myself a member of the sandwich generation for a long time, but I never really thought too much about it. My worst sandwich moment occurred when I was speeding my way through the industrial part of town, hurrying to visit my mother in the nursing home before it got too late.

Here I am, eating my Taco Bell burrito (they’re the easiest to eat while driving), when the phone rings. This was before it was illegal to talk and drive, but I’m pretty sure it wasn’t very smart, even then, to be talking on a cell phone while eating a burrito AND trying to drive.

On the phone is my youngest daughter.

“You’re on the way, right, mom?” she says.

I’m on the way, alright, but I have a feeling that’s not the “way” she’s referring to.

“MOM! You promised to bring my soccer shoes and clothes to the field. We’re playing in 10 minutes and I need to warm up! You’ll be here by then, won’t you?”

At that minute, I feel like the worst mom in the world. I think, “AH, this is what it means to be a sandwich gen mom!”

OK – you’re right. Those weren’t exactly the words that went through my head. But later, I thought how absolutely impossible it is to be in this position some days. The balancing act just requires way too much dexterity for many of us – and balls (and daughters’ soccer bags) get dropped.

Last week, however, I spoke to several women who made me feel like a mamby-pamby whiner. These are women who care for their aging parent (I can relate) AND one or more special-needs kids. They make numerous trips each month to the doctor, often traveling across their state for specialty medical care. They attend to complex physical needs and learn a whole new vocabulary of diseases, medications, treatments and specialists.

One such mom said to me, “It’s just different when you’re caring for your child. When it’s your parent, you know that aging and challenges will happen eventually. That’s the way of life. When it’s your child that demands all of your time and energy because of their care needs, you know it will never go away. You may even outlive your own child – and then who will care?”

These are the women that I now recognize are the true sandwich survivors. They attend with love and an amazing degree of grace and compassion to needs that I cannot even pretend to understand. They do this today, and they’ll do it tomorrow, the next day, and for as far into the future as they can see.

I am honored to have met several women who do this work. I’m even more honored to know that these women stand ready to support other sandwich moms and to offer encouragement, advice and an understanding ear to them.

You know the sandwich called the “Hero?” I believe that I’ve met their caregiver equivalent – heroes, each one of them.

Monday, January 10, 2011

Happy New Year!

Did you have an enjoyable holiday season?

Millions of Americans find holidays stressful, sad or just plain exhausting.  Family members may have a moment when they see mom or dad looking frail, needing help or acting forgetful – a very upsetting moment when we realize our parents really are aging.

Others of us spend time with our loved ones, but don’t experience the joy of the holidays because of illness, dementia or disabilities.

My dear aunt Judi sent me a note this Christmas.  She had just returned home from visiting her husband.  He’s been diagnosed with Alzheimer’s disease and has lived in a care facility for nearly two years.  He no longer recognizes her or responds to her in any way.  She wrote, “I used to have ‘friends’ who would come on Christmas to visit their loved ones.  Today was the facility Christmas party and absolutely none of them came.   I can only assume their loved ones have gone home or passed away.

“When the presents were handed out, I opened his for him (and of course, I had wrapped and brought it).  He did not pay the slightest bit of attention to it.   In a whole roomful of people, I have never felt so alone.  I cried most of the way home.”

I know my own holiday experience had several bittersweet moments. I thought about my dad several times, missing him these last four years since his death. I held special ornaments in my hands that I had bought when my children were little, and reflected on the passage of time and the loss of tradition.

In many ways, a New Year is a great gift. We can look forward instead of back; we can feel cleansed of many of the holiday emotions and baggage.

Perhaps we can even get a few extra minutes of rest, relaxation and rejuvenation to get us through another year – with joy, peace and happiness.  Happy New Year, friends.

Tuesday, December 14, 2010

It’s looking an awfully lot like Christmas

It’s looking an awfully lot like Christmas – everywhere but my house!

The lights are on the courthouse; the tree in the public square is exquisite; my husband even got our own house lights up and operational – down to the little squizzly trees in the driveway.

But inside the house, it’s still Thanksgiving. Beautiful fall colors; the harvest horn on the entry table – it’s all there, frozen in time.

Like so many of the sandwich generation, my life is busy beyond belief. Yes, I have the same number of hours in my day, but somehow my energy has serious limits.

And when I do get a few minutes of time, I find myself reaching out to those I love – my husband, my daughters and my friends. We share a quick catch-up conversation, and a sense of being part of a connected, significant family unit.

And isn’t that exactly what this season is about? Not the d├ęcor – I will, at some point, get the fall stuff down and the wreaths and tree up – but the people in our lives, and the blessings that we exchange as we do our very best to slow down and reach out.

My Christmas wish for you is that you take the time this season – leaving the dishes and the housework alone – to reach out, connect, and share the joy with those you love.

Wednesday, November 3, 2010

It’s “Hug Your Sister” Month

It’s not really “Hug your Sister” month – it’s actually National Family Caregiver Month.

But if you’re a caregiver, you probably can relate to the groans I hear whenever a family caregiver starts talking about their siblings.

“He’s a great help – as long as he can phone it in.”

“I’m doing all the work, and she shows up once a year to visit. The way our parents treat her, you’d think she was the one doing all the work – not the one popping in to tell me how it should be done.”

“My sister disagrees with everything I want to do. She insists mom isn’t as bad as I say she is – she has no idea.”

It seems like every family has a breakdown among siblings, especially when mom and dad need help. One child – usually a daughter – becomes the primary caregiver or decision-maker. The other children typically take a seat as far removed from the action as possible.

Stop for just a minute this month to look at your own family situation from your siblings’ perspective. Maybe they’re not doing the work, but look at the time they’re missing out on, too.

Francine Russo tells the story in her book, They’re YOUR Parents, Too of being the “bad sister” – the one who rarely visited and left the heavy lifting to her sister.

At her mother’s funeral, Francine realized how much she had missed by not being actively involved in her mother’s care. While feeling relieved that she didn’t have to do the work, in reality she was robbing herself of an opportunity – forever gone – to get close to her parents and to have the kind of relationship that her sister had.

She learned, as many, many caregivers learn, that the greater the challenges of caregiving, the greater the rewards and sense of joy and accomplishment the caregiver often feels at the end.

So this month, if you’re tempted to think, “Why doesn’t she step up and take some of the load?” try rephrasing the question.

Try thinking, “She’s missing so much. I’m sorry for what she’s missing.”

And go hug your sister.

Wednesday, October 13, 2010

Calling all Caregivers

In our caregiver support group we often talk about our caregiving experience as a journey.

Some days, you’re slogging through some pretty deep muck. You feel like you’re battling to get anything done. You feel like you’re doing nothing but battling with - or for – your loved one.

Some days, you’re hiking up a steep hill in shale. It takes every bit of effort you have to move a few steps forward – and then you slide almost all the way back to your starting point. The saying, “Three steps forward and two back” feels like positive thinking.

Then there are those rare days when the sun breaks through the clouds and you feel blessed and so very privileged to be able to care for someone you love.

In our group, we listen to other people’s stories. We reassure them (“No, you’re not crazy!”) and we reassure ourselves (“At least I don’t have to deal with THAT!”).

If we’re lucky, we find a lot to laugh about, from one caregiver’s story about her mom, (“So then she said…”) to another’s joke (“You know you’re crazy when…”).

By the end of the evening, we’re all glad we came. We’re relieved that we could share our challenges, and listen to others. We feel a little glow inside as we realize that we’re not alone on this treacherous journey through uncharted land.

I hear from families who can’t get to the support groups. Often, they’re the ones that could use the support and encouragement the most. They have no one to give them a little break; to stay with the person in their care so they can get out and get refreshed.

For the past year, I’ve been working on a national family caregiver’s support team, developing a website that will be fresh, interesting and unique. It is out intent that this site provide some relaxation and fun for family caregivers, as well as a place they can meet others who are traveling similar journeys, and help share the load.

We’re looking for individuals to help us – to join in building a community of people who support each other in caregiving.

Perhaps you’re in a business that serves caregivers – you’re invited to share your expertise and wisdom.

Perhaps you’re great at sharing your own stories about caregiving, or at simply listening.

Whatever your gift, please join us in building this community. Email me ( I’ll send you details and welcome your help.

When it comes to caregiving, like so many of life’s most challenging tasks, it does, indeed, take a village.

Tuesday, September 7, 2010

Want to stay in your home? Check out new technology!

Several years ago the Center for Aging Services Technologies, in conjunction with Intel, created a video imagining what digital health and wellness monitoring for senior adults might someday look like. People got excited about this – and kept asking where they could get it.

“It’s all available technology,” says CAST representative and Intel aging technology expert Eric Dishman. “But none of it is readily available today exactly as it is shown in this video.”

That was then.

Today, technology to aide seniors and their caregivers is a fast growing industry. It’s diverse and, if baby boomers are true to form, it will soon be as pervasive as the internet.

Earlier this week a feature story on National Public Radio, “Wired Homes Keep Tabs on Aging Parents” showcased a video monitoring system offered by ResCare, a national in-home care company that provides “telecaregivers” for clients. While it might feel a little invasive at first, the peace of mind provided by having someone visually checking in with a loved one is worth it, at least for the family in the NPR story. Noteworthy as well is the unexpected benefit of this service: social contact and companionship for the elder.

More and more Americans are living longer, healthier lives. Most want to stay in their own homes as long as possible. While this may be our preference, it is often not the optimal situation in light of brain science.

“Our brain is designed for us to be connected to other people – our ‘tribe,’ if you will,” says brain development education consultant Joseph Christensen, founder of Brain Development Etc., and part of the aQuire Training Solutions’ development team. “When we don’t have our tribe around us we are very stressed and don’t know why. Chronic stress, of course, can lead to a host of other problems such as depression, anxiety and social withdrawal.”

Nutrition and exercise are also keys to long, healthy lives – and brains. Social isolation tends to negatively impact these areas as well.

With the ResCare program, even elders living alone at home can gain companionship and human contact. This alone might be the factor that allows them to continue to live in the place of their choice – their home. Certainly combining this program with other home technology programs (like fall detection monitors, medication reminder systems and more), we begin to approach the world where technology, in all its forms, helps us continue to live healthy, productive lives to the end.