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!

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.

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.

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 décor – 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.

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.

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 (Sharon@aquiretraining.com). 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.

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.

Caregiver Reality: Sometimes it stinks

I rarely endorse specific products, although sometimes a caregiver will share with me a product that they feel saved their life. This is one of those times. Dorothy Mayer, a senior care professional who is also an instructor for online courses at our site for nursing home and assisted living administrators (www.EasyCEU.com) asked me if she could share her story – and her pitch for a product that made her own caregiving journey just a little more pleasant.

Here it is – you can check out her website (www.mayer.sentsy.us) for details:

I have been a caregiver for most of my life as my parents were 36 and 57 when I was born.

When my Mama died on December 15, 2008 I became the full-time, only caregiver for my father. He is now 90 and, although he has three other living children, I am his caregiver.

Proudly.

Unabashedly.

Sometimes badly.

More often than I care to admit, reluctantly.

But we are definitely a “we” as opposed to some caregivers who have a real life. I don’t really. This is it. This is what I promised to do and I will – even when the doctors suggested that he needs to go to a nursing home. I said “no” and surprisingly got some of them quite angry.

He is my responsibility.

In the summer of 2009 he got quite ill. To be polite I will call it intestinal distress. We went to the hospital three times and he was never admitted – in fact his problem was rather dismissed. On the third visit I went to the CEO’s office and demanded that he be admitted (luckily I went to high school with the CEO) and he was admitted immediately.

It turns out that he was fine (although in my mind I had diagnosed him with colon cancer). He had just listened to one of his other children and been told that as you age you lose the ability to produce hydrochloric acid and so he was supplementing his diet with hydrochloric acid (I am not a physician but I do not recommend this).

Between the hospital stays this house smelled horrible to put it mildly. Between his “intestinal distress” and his habit of taking off a depends in the middle of the night and throwing it on the bathroom floor I was literally unable to go into his bathroom to pick up the depends.

A friend called me and invited me to one of those home party that sell things. At first I said, “No way,” but decided to check it out. The product they were selling was “Scentsy” – and I was impressed.

Scentsy Wickless Candles are just that – wickless. The wax melts by a light bulb so there is no open flame. Most of the scents are quite nice and relatively strong.

I bought one that day and it has lived in my dad’s bathroom ever since. I do have to change out the scents as they run out of, well, scent but I became a convert that day and we now have three in this house. Because they do not have wicks and are therefore flameless they are allowed in nursing homes and assisted living facilities – as well as other work places where traditional candles are not.

I am such a believer in this product that I tell every other caregiver about it. Go look at my website: www.mayer.scentsy.us to get an idea of this great product.

Thank you caregivers for all that you do – it is a thankless job sometimes but necessary.

Dorothy Mayer

Reduce the Risk of Falling

If you’re like most families, falls are one of the top things you worry about with your aging loved ones. Falls are, in fact, the “second leading cause of injury-related deaths for people ages 65 and older, and are the most common cause of injuries and hospital admissions among the elderly” according to the Centers for Disease Control. (Source: CDC, NCHS. Mortality Data Tapes. Hyattsville, MD: the Center, 1998.) For many elders, falling and breaking a hip is one of their greatest concerns – too often, it spells the end of independence and mobility.

There are several simple things you can take to help prevent falls, including steps around the house (extra bright lighting, removing throw rugs, clearing pathways). Exercising regularly to maintain strength and mobility is also crucial to fall reduction. The CDC brochure has many more useful tips (also available in Spanish).

Even if you do all of these things, fall risk is still a concern. Consider one of the many fall alerts now available (like this one from Wellcore), that can identify a fall even the person cannot push the button. This is particularly useful if a fall is caused by, or causes, an unconscious episode. In that case, a fall detector that automatically summons help can save a life – a life that’s important to you.

Gail Sheehy Addresses Caregiver Stress

The Orange County Register's news article about author Gail Sheehy's new book, "Passages in Caregiving: Turning Chaos into Confidence," is right on point regarding caregiver stress. The article quotes Sheehy as saying,

Once the solitary caregiver gets so stressed out emotionally that her own health declines, she can no longer provide the care.  The only option left is to place the family member in a nursing home - the last choice of everybody, the most expensive for taxpayers and guaranteed to leave the caregiver burdened with guilt.

While I'd like to note that there are other options than nursing home (assisted living and in-home care, to name a few top choices), Sheehy is right overall.  When the caregiver is too stressed to continue care, she is often too stressed to work through creative solutions to care or to make the necessary arrangements, all of which are, additionally, stressful and exhausting.

Sheehy stresses the need to caregivers to take good care of themselves and to form a support circle of family or friends.  On these very essential points, I couldn't agree more!

Just one more nudge, too, to family caregivers to get information from whatever source you can to help you provide care is the most effective, efficient and pleasant way possible.  Caregiver training, in whatever form it takes, DOES work!

Three simple steps to optimal caregiving

With all the news about the increasing prevalence of families involved in caregiving activities you know one thing: You’re not alone.

That may not be much help to you at 3am, though!

One of the joys I’ve recently discovered is working with a local hospital’s Alzheimer’s family support group. I was a little concerned that it might feel like a long day at work, but I’ve discovered that it feels more like an evening shared with friends. We brought home-baked goodies, fresh fruit and simply talked about what was on our minds.

I had prepared a program on how to reduce the stress caregivers experience – stress that causes family caregivers to have significantly more illness and shorter life expectancy than their non-caregiving peers.

But the group had other questions, namely “How can I help my loved one best?”

Caregiving is difficult work. Knowing how to do it is even more difficult, especially when you’re feeling isolated, sleep-deprived, exhausted. While tons of caregiver training and support classes are available (including my own at www.caringformom.com) sometimes families just want to talk. They just want it simple, too – nothing too difficult to remember; no need to memorize stages, steps or techniques.

So we broke it down to three key things:


1) Accept. Accept that your loved one is doing the best that he or she can. Today. Right now. Even if he could do it better yesterday. With very few exceptions, people with memory loss ARE doing the best they can.

2) Reassure. Imagine feeling like a strange person in a very strange land. Nothing makes sense anymore – words don’t make sense, nothing is where it seems like it should be, even buttons refuse to cooperate. How would you feel? Angry? Frustrated? Depressed? Lonely? Frightened? A family’s job sometimes is simply to provide the tour-guide reassurance. “It’s OK to be afraid; this is tough stuff. We’ll figure it out together though. I’ll be right here to help if something doesn’t make sense. I’ll try to remember when you forget. I’m here for you.”

3) Maintain best function possible. You can’t turn back the clock. You can’t defeat an irreversible disease process – or conquer aging, for that matter. You can work to keep your loved one at his optimal level of functioning by making sure some basics are met:

1. Nutritional needs. Live alone and start forgetting – nutritional impairment is right behind. Assuring that your loved one gets good, nutritionally balanced meals is key to optimal functioning.
2. Medication. Most of us, even with good healthy memories, forget if we took that last pill. For elders, medication mis-management can result in frequent hospitalizations, with a little more slipping every time. Electronic reminders are available if the people-reminders aren’t!
3. Exercise. Moving the blood through the body moves the blood through the brain, too. Walking or even chair movement can keep the person as alert and functional as possible. Sedentary days, evenings and nights can cause a rapid decline in all functioning.
4. Social interaction. We’ve probably always know this, but lately we seem to have lost our connections. We humans are social creatures. We were made to live in close tribes – then neighborhoods – then families. We supported each other, but we also spent hours discussing the world events and arguing about Joe down the street. Today, we disconnect and sit in front of the TV and wonder why our minds fade, and we start to lose our will to live. We know now that staying socially engaged keeps us mentally engaged – and that keeps us vital and alive to the end.

These basic tips might be challenging to implement, but they’re essential to the well-being of the elder – and the caregiver.

They’re not impossible, but while you’re thinking how to best implement these with your loved one, you might just want to take a walk. It’s one of the best stress-relievers you’ll find, and it’s free!

Caregiver Stress

You recognize the feelings of fatigue and not having enough time for yourself. You might even realize that you’re a little more short-tempered than usual, and you don’t have the usual bounce-back ability when things go wrong.

But do you really know how the stress of being a family caregiver is affecting your body and your life?

Researchers recently reported on a newly discovered physical impact of the stress of caring for a spouse with Alzheimer’s disease in the June 8, 2010 issue of the Journal of the American College of Cardiology.

What the researchers found was a direct relationship between how impaired the person dementia rated and the level of flow-mediated dilation (FMD). While this sounds mysteriously complicated, in simple terms, the more impaired your FMD is, the higher your risk for cardiovascular events like a heart attack or stroke.

It’s not surprising to me that individuals who are caring for higher demand loved ones suffer physical problems at a higher rate.

We’ve known for a long time, in fact, that these special caregivers suffer more sickness and a higher rate of death than their peers who are not caregivers.

But for the average caregiver, they’re just doing what they have to do, without realization of the stress it may be causing their bodies.

How do you know if you’re too stressed? Ask yourself these questions:

Do you feel like you’ve lost your energy or enthusiasm for life?

Do you feel tired or exhausted much of the time?

Do you feel out of control and sometimes show emotions that aren’t normal for you?

Do you feel nervous, anxious or tense much of the time?

Do you feel like you’re becoming isolated from your friends and family members?

Do you have sleep problems – getting to sleep, staying asleep, waking up too early? Do you feel like you need to sleep all the time?

Do you have problems concentrating or remembering things?

Are you experiencing more illnesses than usual for you? Colds, upset stomach, headaches? Is your blood pressure higher than it should be?

Even one or two YES answers indicate that your work as a caregiver is causing you stress.

What can you do?

Start by taking stock of the things that most challenge you in your caregiving work. Then start looking for resources to help you with those challenges.

These resources may be family members – tell them what you need. Don’t wait for them to volunteer their help.

It’s also time to call in the paid helpers. Perhaps some in-home care will relieve you enough to regain your health and your sanity.

Perhaps it’s time to look at an assisted living community or other level of facility care.

Ask around in your community for other programs and services that might work in your unique situation.

Here’s the bottom line: as a caregiver, if you don’t take care of yourself FIRST you won’t be around to care for your loved one. It’s a simple fact.

Did you know that one sure way to reduce caregiver stress is to learn tips and techniques to make your caregiving work easier? Check out a caregiver training course in your community today or go online to learn more from www.caringformom.com.

Picnics in the park

I kept a photo on the refrigerator door for a long, long time. The picture was of my eldest daughter and I at a picnic, taken at a moment neither of us was posing or prepared. We both had on sunglasses and were laughing together at something.

Here’s what I loved about that picture: you had to do a serious double take to tell which was me and which was my daughter. We looked so very much alike. Of course, I loved that!

I didn’t feel the same joy when I looked at my mom and wondered if people could still tell us apart.

It is a tough thing to watch our parents age and realize that this will one day be us. If we provide care to our parents, we are likely even more aware of the toll aging has taken on their bodies. We watch them experience cognitive decline and wonder, “Will I start to lose my mind any day now, too?”

Sometimes, watching the changes in our parents is enough to cause us to take a step back. It’s easier not to be faced with our inevitable aging than it is to look it right in the eye. We hold back our time; we hold back our energy. We feel a deep level of pain, fear and anxiety that keeps us from laughing, hugging, joking together.

And so, we are not present, when our simple presence could make all the difference.

I recall those moments when I so proudly would look at the picture on my fridge and think, “We look just alike.”

My daughter may have looked at the same picture, have the same thought, and feel horror and dismay.

It’s time to look past our obsession with youthfulness, and focus instead on relationships. It’s time to add more love – not less – to our lives.

Maybe we can close our eyes to the ravages of age. Maybe we can learn to open our eyes to the inner beauty of our elders – to the 25 year old young man with his new car; the young mother with her new baby.

Their hopes and dreams were fresh and alive then. Inside, some of those hopes and dreams still burn on, just waiting for us to say, “Hey mom, do you want to go for a drive to the park and have a picnic with me?”

Respite for family caregivers

“It’s so incredibly isolating,” my friend Melanie said recently about the time she was caring for her mother. “Even though we had great hospice nurses, there was often time when I couldn’t talk to anyone about my experience.”

Melanie helped her dad care for her mother, dying of cancer, through the end of her life in her own home. I remember talking to her one day about her drive time from her home to her parents, and how she had spent the entire drive home that week (over an hour each way) composing her mother’s obituary. Difficult, but so very important to Melanie to write the final chapter – the summary, really – of her mother’s life.

Like so many family caregivers, Melanie balanced her children – one at college and one still living at home – her family tasks and helping her parents. She talks of feeling too tired to even carry on a conversation after spending a day or two immersed in her mother’s care.

Melanie is a bright, well-educated woman who comes from a family with good financial and emotional support. For her, caregiving was isolating, exhausting, emotionally draining. What must the person with family, financial or emotional stresses in addition to the caregiving experience?

Another friend, Mary Ann, runs a local agency that offers family caregivers relief through a program called “Respite.”

The program, run by our local county and funded through state dollars, doesn’t ask how much money you make. It is available to family caregivers at any economic level. It provides someone to stay with your loved one while you take a break. It even pays for a massage, if that is what relieves your stress best.

“We all have a breaking point,” says Mary Ann. “Anything we can do to help someone avoid that breaking point is extremely valuable to the caregiver and to the person receiving care.”

Mary Ann knows. She cared for her grandmother with dementia; now she cares for her mother who has advanced memory loss. Even though her mother lives in a small care home, Mary Ann is involved in the day-to-day care. Ask her about her mother on any day of the week, and she’ll choke up as she shares – just a little – the pain of watching “mama” slip away.

And so Mary Ann encourages all family caregivers to get relief any way they can. She actively looks for ways to encourage, support, train and relieve the most exhausted caregivers, before they simply say, “No more.”

It is isolating, exhausting and draining, as Melanie points out.

But there is help. There is hope.

In the end, there is joy.

Caregiver tip of the day – slippery jammies

Vickie Young shared her favorite caregiving tip today: silky pajamas.

We were talking about the value for family caregivers to taking a caregiving class – something really challenging for the typical too-busy-already family caregiver.

But as Vickie shared how much simpler care for her bed-bound father-in-law was with that one simple adjustment from comfy (but sticky) flannels to slippery satins, it made so much sense: who knows the tricks better than someone who’s been there before you?

Find a class and learn tricks of your own. Today, we have online classes for caregivers that make learning fit your schedule. In fact, with online learning you can take classes whenever it works for you, even at 4 in the morning.

In your own pair of slippery pajamas.

Waiting to Exhale – The final stage of caregiving

My friend graciously allowed me to interview her on camera the other day about her caregiving experience. She shared how she began her caregiving journey as a long-distance caregiver, trying to arrange for care for her mother who lived all the way on the other side of the country.

Frustration and increased needs led her to move her mother to her home town. Ultimately she has placed her in a care setting, and visits her several times each week, remaining incredibly involved in her mothers care.

She talks about experiencing the loss of her relationship with her mother, and finding herself struggling to get her mother to bathe – her mother, who always prided herself on cleanliness (next to Godliness, you know).

She talks about how difficult it is to share what sets most heavily on her heart: her readiness to say goodbye to her mother, and to finally breathe a sigh of relief that her mother no longer struggles but is at peace.

She’s talking about welcoming her mother’s death.

No wonder she hesitates to share her feelings about caregiving.

No wonder she believes that only those who have been there will truly be able to relate.

I remember my aunt who cared for my grandfather to the end of his life, sharing a story that made us laugh and cry along with her. My grandfather had been barely responsive for days when he finally seemed to slip away. My aunt tiptoed out of the room, thinking, “At last; peace for both of us,” and called 911.

The ambulance crew loaded Grandpa onto their gurney for transport to the hospital where he could be pronounced dead. On the front steps, one of the crew tripped and bounced my grandfather – who promptly took a deep breath, and began to breathe again. My aunt simply cried.

For her, this event delayed the inevitable moment when her round-the-clock work would be finished and my grandfather would be at peace.

To someone not in the end stages of caregiving this might seem callous and horrifying.

To the caregiver who lives in that place of end-stage care, it’s entirely understandable. They can relate to the pain of watching a loved one slip away, one tiny bit at a time, wondering when – at last – it can all be over for both of them.

That’s one reason why I encourage family caregivers to connect with other caregivers, any way they can. Join a support group – join an online chat group – take a caregiver class. Connect with others who share your journey.

You won’t have to suffer in silence like my friend who believes that no one will understand how deeply she’s longing for the opportunity to finally exhale and say goodbye to her beloved mother.

Caregiver Training worth the investment

I noticed an announcement about a caregiver training course being offered – free – in a community in the mid-west. That’s not really breaking news, but the part of this story that startled me was that hardly any one had signed up for the class. The news story was that lots of space was still available.

When I talk to family caregivers I get a clue why the class was still empty. Families realize that training would be helpful, but how on earth can they fit it into their already over-booked schedules? It can feel like one more thing to do – one more task requiring attention.

I encourage those caregivers to consider whatever training they can get as a tool that can make a real difference in their caregiving life. I tell them about online learning options, and about resources available to pay for training for those with long term care insurance policies or coverage.

I say it over and over, because of these reasons:

Caregivers who have been through training experience significantly less depression and stress – ailments all too common for family caregivers.

Caregivers who have been through training classes are often able to keep their loved ones in a home setting – avoiding nursing home placement – for up to 2 years longer than those without training.

I tell them, “It’s worth the investment of time and money.”

In response, I hear family members who have completed training say, “I can’t believe that I was doing this all wrong! If I would have known these things, it would have been so much easier – on both of us.”

Or the family who says, “Learning this saved my life! I felt sure I couldn’t continue until I took these classes.”

So find a class, sign up and get going! If you can’t make it to a classroom-based program, try an online class. You may be amazed at how much this changes your caregiving journey from one of stress and chores to one of joy and deep satisfaction.

To learn more about the caregiver training programs offered by this author’s organization visit www.IPCed.com or www.aquiretraining.com.

Coping with the demands of caregiving

If you’re busy caring for a parent or spouse you may not have heard the rumbling from all corners lately.

Family caregiving is finally getting a little respect.

Suddenly, we’ve become aware that it’s not just the hidden few in our community who are responsible for managing care – or providing it hands’-on – to a loved one.

It’s nearly one out of every five households in the U.S. today – nearly 50 million Americans, according to a recent AARP-MetLife survey.

While there’s some comfort knowing you’re not alone in your caregiving challenges, the real advantage comes from the actions that this is inspiring.

Just check out the internet these days. Type in “family caregiver” in any search engine, and watch the websites, news articles and information start pouring in. You can find tons of helpful articles and resources if you’ve got the time to wade through the results.

Of course, if you’re busy caregiving you probably don’t have a lot of time to sit at a computer searching for resources.

You may just want to read a good mystery at the end of the day, or watch a mindless sitcom on TV.

No one would blame you for wanting a real break, when you finally get to take a break.

But I’d like to encourage you to take a few minutes to seek out some resources that work for you, especially information, training, or resources that make your caregiving job easier.

Imagine if you could communicate more clearly to the person in your care, and avoid some of the frustrations you now encounter. Imagine learning how to ask your friends or siblings for help in a way that they respond to, without getting offended.

Imagine learning tricks to make the tasks go easier for both of you.

Caregivers who take the time to attend training classes say, “It saved my life.” Often, they don’t realize how hard their job is, and how many little things they can do to make it easier, until they take a step back to learn from an expert.

You don’t have to dedicate every waking minute to this.

Just start with one little step. There are a thousand experts out there, just waiting to support you and help you be able to continue to care.

If you’d like to learn more about online training for caregivers, check out the Personal Care Aide Certification course offered by the Institute for Professional Care Education at www.IPCed.com.

You are not the boss of me

Don’t you just love it when you hear those words, “You’re not the boss of me!” While we usually think of them in relation to our toddlers or teens, I’ve heard them lately from two sources: a middle aged person (to his spouse) and an elder (to their child).

Happens to be true, you know. Think about our children, from birth, through the toddler years, to pre-teen and teen. When can we possibly think we’re the boss of them?

Not in those first few weeks after birth – those new little ones are clearly the boss of us, waking us from sound sleep, demanding to be fed, changed or just cuddled.

Certainly not during the toddler years when we find ourselves challenged by the simplest things (“wear your coat for Pete’s sake – it’s snowing” – “eat at least ONE pea!”). We negotiate, we beg, we yell a little, too, and usually end up resorting to bribery of some sort, despite our intentions never to stoop to that level in our parenting.

Anyone who has imagined they’re the boss of their teen children has been sorely tested, and likely battered and bruised in the process, too. Lock them down, and they’ll find a way to escape. Try to control who they talk to, and they’ll just hide their friends from you.

When our kids finally arrive at the “adult” years (I put that in quotes, because most of the people I know are still supporting in real, tangible ways our grown kids), we sort of sigh, and think, “I’ve done my best – my parenting is over.” But of course, it isn’t. Our kids call with adult challenges, crises and questions. We juggle and balance like high-wire circus performers, trying to answer their questions without being the over-bearing “mom who won’t let go.” Again, we hear, if only in the back of our own heads, “You’re not the boss of me!”

And then we arrive at that point we just didn’t see coming (or were in denial about): the time when our parents need us to re-engage in their lives. Only this time, instead of them giving us advice, we’re giving them advice. We’re helping them navigate complex health care issues, deciding what housing options make sense for them (and for us, of course), and starting to fill the gaps of a rapidly thinning social circle of companionship.

Sometimes we get confused and think that now, we’re the boss of our parents.

A couple of days ago a woman shared her story with me about having to take her husband’s car keys away from him. He is furious with her. She’s guilty, angry, distressed and frustrated. Her husband’s Alzheimer’s is so far advanced that he simply can no longer safely drive – as his two recent accidents proved to everyone but him (and his doctor, who refused to “get involved.”)

Her husband blurted out to her in anger last week, “YOU ARE NOT THE BOSS OF ME!”

To which she replied, “No, but I am the boss of that car. I am the one who pays the insurance. I am the one who will have to clean up the blood from the people you hit. You are NOT DRIVING THE CAR!”

There’s no easy way to make this tough transition but to muscle through, much like some of life’s earlier transitions. We talk calmly – or shout loudly – but we keep on communicating. We keep saying, “I love you. I will be here for you. I will help you. But I won’t let you hurt someone else or get hurt yourself, if there is any way I can help it.”

And we know, as we’ve known all along, that we are not the boss of them. We’re just doing the very best we can, as our roles shift, our responsibilities change – once again – and we find a new balancing point in our lives.

Caregiver Courage

Straight talk from a caregiver about guilt, fatigue, even the feeling that you wish your loved one would hurry up and die – these are the kinds of stories that I discovered in a blog I happened across this morning.

Dyingtohelp.com is a blog written by Lois Kelly about her caregiving experience for her dying mother. It’s written with love and humor; it definitely touched some of my own caregiving nerves.

Here’s one entry I love: “Big “C” and small “c” caregiver courage.”  Ms. Kelly describes the kind of courage we see on TV with the rescue of a small boy from open water: “…screams of victory. Women and men crying. Dogs barking. The parents heaving, gulping frigid sobs as the EMTs wrap the boy in a silver space blanket, lift him in their arms and run to the ambulance.”

On the other hand, there’s caregiver courage – the kind that doesn’t make the evening news. Kelly describes it this way:

“The day-in, day-out caring for someone who is sick is courage, too, but small “c” courage. There’s no glamour. No big momentous event. No crowds cheering you on, slapping you on the back after you help the person you love inch his or her way into the bathroom at 3 a.m. Waiting outside the bathroom door, ready to help the person slowly, slowly get back into bed. This courage won’t make the six o’clock news. It won’t win special awards or recognition. It won’t even deserve a conversation when people check in with you tomorrow.”

Caregiver courage doesn’t get the recognition that big-screen courage gets. But at the end of the day, as Kelly says,

“This small “c” courage is Love. Love with a capital ‘L.’”