Happy New Year!

I hope you had a wonderful Christmas celebration. This year all of our children were home, even though that meant we celebrated on Christmas Eve day to make sure everyone was included. Maybe because this was special for us, I listened carefully to other people sharing their Christmas traditions:

Jim and Joan, who say, “Christmas is Christmas.” They celebrate on the 25th, no matter who is home. When their distant children arrive a day or two later, they open their presents then.

Nancy, who spent Christmas day alone, in her pjs, watching classic movies. Her children traveled to visit their father and spend Christmas with him. As a divorced parent, Nancy has learned to make adjustments and avoid the pain of holidays spent apart from loved ones. Actually, she looks forward to it and still loves the holiday.

My brother, Dan, who spent Christmas Day at a homeless shelter serving lunch. It’s his ministry and his way to celebrate his own blessings. The next day he was on a plane to Hawaii, so he had much to celebrate this year.

Our Christmas Day was spent visiting our aging parents – separately –in their retirement communities on opposite sides of town.

I think back on Christmases over the years: the first one away from my parent’s home; the first one as a new bride; the first one away from my children. Each of these experiences marked a passage of some sort; a measure of the change in life. Some left me feeling hallow and hurt; some signaled an exciting new phase of my journey through life.

This year I felt, for the first time, like a true “sandwich generation” mom – balancing parents and kids (adults, but still my babies); thinking about the passing of the torch to the next generation.

Wrapped up in our changing celebrations are feelings of home, of family, of love. Sometimes the holiday feelings we seek seem elusive; other times we feel richly and fully blessed.

My wish for you as we enter this New Year is that you will find many occasions – the special and the ordinary – to experience the feelings of deep contentment, joy and love. And that you’ll discover new ways to celebrate the changing seasons of life.

Caregiver Certification: why it matters to you

Joe was a stubborn old man. Set in his ways, determined to do what he wanted, when he wanted, he was not about to let some young “girl” come in and help him with a shower.

“I’ve tried everything I know to do,” said one.

“Nothing ever works with Joe!” said another.

“I’m going to try what I just learned in my caregiver class,” said the third of the three caregivers huddled in the hall.

They knew that Joe hadn’t bathed now in several days, and his out-of-town daughter was coming to visit that afternoon. It would reflect poorly on their care if Joe was clearly a little too musky for comfort – not to mention making it tough for the daughter to relax and enjoy the visit.

One hour later Joe emerged from the bathroom with slicked-back, shiny hair and the scent of fresh soap, instead of the reek of body odor. The successful caregiver also had a glow, knowing she had achieved what seemed impossible. Even more important, it had been a positive experience for both Joe and his caregiver.

All three caregivers had good hearts. All three wanted to be the best caregivers they could be. The difference? Good training that taught the one caregiver important skills that increased her ability to be the best caregiver possible.

For family members selecting an assisted living community or home care agency this is a crucial difference. Compassion and a big heart are still vital, but skills training brings it all together and gives the compassionate caregiver the tools to deliver what the family is looking for – and the person receiving care really needs.

Personal Care Aide (PCA) Certifications are just emerging as one form of caregiver certification that is uniquely designed to prepare the caregiver for home-style caregiving. They typically cover all the basic skills required for care, including skills in communication, decision-making and respect for the rights of the person in their care. They reinforce, through the training, principles of independence, choice, dignity and privacy. A caregiver learns to see challenges through the eyes of the client, and to include families in the unit of care.

Many community colleges offer this level of training; high-quality, comprehensive PCA Certification courses are also readily available online through distance education schools. Within the coming decade PCA Certification will likely become the minimum standard for all direct-care workers.

For now, it is one way for families to feel increased confidence that the person providing care has more than a good heart: she has skills and a unique understanding of the difference a good caregiver can make in enriching the lives of the people in her care.

If you’re looking for a quality online caregiver certification course check out the Personal Care Aide Certification course offered by the Institute for Professional Care Education (www.ipced.com). IPC-ed is a school licensed by the Oregon Department of Education specifically dedicated to prepare individuals for work in care related professions.

Caregiver Certification eases fears

I remember hearing a family member tell me that leaving their mom with a new caregiver and walking out the door to go to their own home reminded her of leaving her child at day care for the very first time.

It’s scary. It means trusting someone you don’t know well to care for someone you love and feel responsible for.

Your stomach churns and there’s a sick feeling deep down. Your mind circles around the fear: what if the caregiver doesn’t listen to her? What if she speaks sharply to her, or is rough with her?

You worry if she really has the skills and knowledge to provide the care your mother needs, and the judgment to know what to do if something awful happens (a fall? wandering off?).

You wonder if your mom will ever forgive you for not caring for her yourself; for turning to strangers to provide care.

There’s no easy way to get past these initial feelings when you place your precious loved one (parent or child) in the care of someone else.

Here’s one idea, though, that’s gaining a lot of traction nationally: make sure that the caregiver has solid, formal training with a certification to show for it.

That’s a tough requirement, since most states don’t require caregiver certification, and many areas don’t even have classes to certify caregivers. It’s a fast-growing field for training however, and new online courses make certification available to anyone with an internet connection. Ask – and expect – anyone who provides caregiving to your loved one to be appropriately certified.

It might not take away the initial “first day” jitters, but it will give you a sense that you’ve taken one more step to ensure the safety and care of your loved one.

Online caregiver certification courses are available from a variety of sources, including our newly launched Personal Care Certification course from the Institute for Professional Care Education (www.ipced.com). For details, go to our website or call us toll free at 877-843-8374.

Caregiver love means laughter instead of tears

I’ve got 30 minutes until my next appointment and I need to buy a sweater. There’s only one person working the cash register, but the line is short so I should be OK.

In front of me are a middle aged woman and an elderly woman, probably her mother. They’ve got an arm full of items, but the cashier is working quickly, ringing each item up and folding it carefully.

The elderly woman hands a card to the cashier, who suddenly stops. She looks up at the woman and says, in a loud, slow voice, “This is your insurance card. Do you have any card that has a VISA or MASTERCARD written on it – down here in the corner like this?”

The woman looks through her wallet anxiously. I’m getting nervous for her (and checking my watch). She pulls out a few more cards: her social security card, a membership card, a Costco card. No credit card.

She glances up at her daughter with her head lowered and her eyes downcast. Their eyes connect. I wait for the blame to start: “Mom, what were you thinking?! How could you come shopping without your credit card?”

Instead, they both burst out laughing. The daughter quickly hands over her own credit card and the crisis passes.

For that moment, I forget all about my next appointment. All I can see is the warmth, love and patience that I have been privileged to witness.

Maybe the mom has a touch of memory loss. She might have Alzheimer’s disease and significant impairment. Her daughter clearly has spent the afternoon shopping with her, and clearly expects mom to pay for her purchases. It could have been one of those moments where caregiver stress maxes out the meter. The daughter could have simply lost her temper, and the mother ended up in tears.

Instead, they both end up laughing so hard there are tears in their eyes. They see the humor of the “senior moment,” and – instantly – the tension is gone.

Maybe they know, like so many other caregivers, that sometimes you’ve just got to laugh - or you might never stop crying.

Celebrate Family Caregiving

Here are two things you need to know: First, this is National Family Caregiver’s Month and second, if you’re not a caregiver now, you’ve either been a caregiver in the past or will likely become one in the future.

My conclusion? We should all celebrate this month together, since we’re all in this together.

You might think, “What’s to celebrate about caregiving? Isn’t that just an awful task?”

Here’s what family caregivers tell me, over and over again: “It was the hardest thing I’ve ever done. It was also, in the end, the most wonderful thing I’ve ever done.”

Mind you, most family caregivers don’t feel this way while they’re in the middle of caregiving. Those family caregivers typically identify more with feelings of exhaustion, frustration, stress and anxiety. They worry continually about their loved one falling, being left alone, needing more care, and – when they get a minute – about meeting all the other needs of their family, immediate and extended.

Sometimes, it’s not until the caregiving task is over and the caregiver gets some distance (and perspective – and rest) that they can look back and see what a rich, meaningful experience it was to care for a loved one.

Vicki says, “I got to know my father-in-law in a way that was so special. He and I became very close – it was a tremendous gift to me.”

Mary says, “I treasure every single minute I spent with my dad.”

Lorraine says, “I was my mother’s caregiver because she was my mom. It was an honor and a privilege to care for her.”

All three women remember how hard caregiving was. But all three women feel that their lives are richer because of their caregiving work.

This month, I celebrate Vicki, Mary, Lorraine and all the other family caregivers – past, present and future.

Sandwich Gen relationships take odd turns

I had lunch with my mom the other day. She was positively glowing. She’s been talking for several weeks about her new friend; now I’m starting to wonder: when do you ask to meet your mom’s new boyfriend?

What an odd experience it is some days in the middle of the sandwich generation! On the one hand, my three young-adult daughters still need some guidance and support. We have long conversations about finding “Mr. Right,” and I worry about who they are dating.

Is he genuinely interested in her? Does he respect her and treat her well? Is he financially settled or focused?

Thinking about my mom and her new relationship I realize that I have the exact same questions about her new friend.

Of course, this is my mom, not my daughter. I’ve chosen – for now – not to say, “So when do I get to meet this guy?” but to let my mother call the shots. She is an adult, after all. I am her daughter, not her mother (as she’d be the first to remind me).

But all the same, mom, I really think I should meet him sometime soon!

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.

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.

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.

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.”

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.

Caring for Mom or Dad from a distance

I came across a great article titled Long Distance Caregiving: Advice for the 'Sandwich Generation' with tips on how to manage long distance caregiving. Today, many families are spread out over distance – sometimes measured in a few miles; other times in continents and days worth of travel.

It can be really challenging to help a family member from a distance. It’s really tough just to identify when help is needed, and what help is needed, let alone provide assistance.

It helps to have someone on the ground where your loved one lives who can help you figure it out, and then work with you to make sure that your loved one has the support he/she needs. Friends, neighbors and relatives may be able to help, but sometimes you need someone a bit more removed that you can trust to see the big picture. That’s where professional care managers may be able to help. Although they’re not inexpensive, they are generally more economical than cross-country trips. The National Association of Professional Geriatric Care Managers can help you find a care manager; their website is rich with resources to help you understand this service as well.

Family caregiving is challenging in the best case; at a distance it’s a very tough job. Here’s my advice: Get all the help you can!

Smart Medication Management Can Promote Compassionate Caregiving

I invited Katie Huffstetler from the company Senior Living Communities to share an innovation her company is implementing to help with the challenge of medication management. Here’s her guest article:

It’s hard to move out of a family home into an assisted living community. If that community feels like home, however, that move can be just a little easier.

The company I work for recently announced a new initiative designed to reduce drug error rates and enhance residents’ quality of life by taking the med-cart out of medication management. In our communities, assisted-living residents will enjoy an in-suite, secure cabinet that houses their pre-packaged medication. Each pouch has a bar-code that nurses will scan into a community-wide computer system, recording when the medication is given and ensuring accurate dosage practices. With caregivers inputting information electronically, transcription errors are virtually eliminated.

For caregivers that means one thing … peace of mind. The added bonus of a decrease in institutional scheduling means residents can dictate when they would like to take their medication, just as they would if they were living independently. Although they will continue to take their medications as prescribed by their physician, residents will not be on a rigid, operational timeframe. Morning medication can be taken before or after their first cup of coffee, according to their individual preferences.

Did you know recent statistics estimate more than 25 percent of assisted living residents enter facilities as a result of poor medication management?

New technology gives us a tool to help people avoid this need, by better managing their medication at home. In our independent living retirement communities we’ve partnered with Concept Medical Technologies to provide MedAssure to the residents living there. MedAssure is a counter-top computer capable of storing and dispensing pouch-packaged medication at a scheduled time. Residents or caregivers program alerts into MedAssure and the computer notifies its user when it is time to take their medication. The machine continues to prompt users to take their medication until the correct pouch is removed.

MedAssure is also capable of sending text or e-mail messages to residents, family members or caregivers if they prefer a text reminder instead of an audible alarm. The computer gives caregivers a sense of safety without compromising Mom and Dad’s independence or their health.

These improvements are broad in scope, but it’s the little successes that mean the most when you’re a caregiver. The industry as a whole faces huge challenges when it comes to implementing operational changes that make residents feel at-home in their surroundings, but if we can agree to think like caregivers, we’ll understand that it’s not so much about efficiency or productivity as it is about putting a smile on the face of someone we love. For more information about Senior Living Communities, visit our Web site at www.senior-living-communities.com.

Celebrating life at the end

Phones ringing at 1:00 in the morning never bring good news.

This weekend, our family experienced that 1 am phone call bringing news of the death of my husband’s mother. It wasn’t unexpected; in fact, it was a blessed relief for the entire family who had watched her growing increasingly weak and less responsive day by day over the past several weeks.

Early on, she would grasp our hands and say, “You know that I don’t want to linger. I just want to go quickly.” Initially we’d encourage her to hang on and fight, but, as time passed, it was clear that lingering wasn’t adding to the quality of her life. We begin to spend the time we could with her laughing whenever possible, talking about her many grandchildren and their adventures, and sharing life with her. Sometimes we’d simply sit and hold hands with her while we watched the news or one of her favorite shows together.

Until the last day, she’d usually grasp our hand with both of hers and hold on tight. Even when she couldn’t talk, she’d look in our eyes and communicate that she valued the time we spent with her.

On the last day, she no longer had the spark of life in her eyes, even though she continued to breath. She couldn’t speak; perhaps she could hear us and feel our touch, but we couldn’t see a sign of her spirit left in her body. We took our turns crying with her and each other; it was clear that we had lost her.

So when the phone call came, it was a blessed relief to know it was finally over for her physical body, too.

We were lucky to have all our children home this weekend. We had a chance to talk a bit about how we handle the death of loved ones, both personally and as a society. I instructed my eldest daughter to make sure I was cremated and put in a lime-green urn (she and I have a running joke about lime green being my favorite color), but mostly we talked about how right it is to mourn while at the same time recognizing that death is a part of each of our life journey.

My mother in law lived a good long life, just two weeks shy of her 91st birthday. This week as we gather with the large, close, extended family she left behind we will cry a little and laugh a lot as we remember – and celebrate – her life.

We need your stories!

Are you a family caregiver? We’re looking for family caregivers willing to share their stories of challenges – and rewards – of the caregiving experience.

How have you managed the shift in the relationship with the person in your care? Do you feel like you’re “parenting your parent”, or has the shift taken you to a different sort of relationship?

Have you reached that point in caregiving where you feel that this experience has joy and meaning for you – not just exhaustion and frustration?

What moments were the most emotionally challenging for you in this process? Was it the initial phone call alerting you that things were not right – or the moment when you had to face a challenging task like taking the car keys away?

What has helped give you the energy, support and courage to continue as a caregiver, even when it got really tough?

As we continue to build resources for caregivers it helps us to hear stories from real live caregivers. Please share your stories with me via email at Sharon@aquiretraining.com. Let me know if you’re willing to chat with me on the phone, too – sometimes that’s the best way to share stories.

Thanks in advance for sharing your stories. Your experiences may help others who are just starting out on this incredibly challenging, rewarding adventure.

Caregiver Guilt

Paula Spencer, senior editor at Caring.com wrote a great article on caregiver guilt titled “Aging and Caring: The secret guilt of caregivers” which I highly recommend both to caregivers and to professionals trying to better understand the challenges of family caregivers.

Paula points out that caregiver guilt closely mirrors what she calls “mom guilt.”

She’s so right, in my experience. Talking with families about leaving mom or dad off at their new retirement community or assisted living home, many report feeling like “leaving my kid at kindergarten or preschool the first day of school.” It’s a feeling of anxious uncertainty, wondering if you’ve made the right decision; if he/she will be OK; if the people in charge will do the right thing.

I believe strongly that becoming a family caregiver doesn’t mean we’re now parenting our parents; rather, we’re experiencing yet another role shift in our relationship as we have at various times throughout life. Still, the feelings of parenting seems pretty close to some of the guilt-feelings of caregiving. When your child (mom) is ill, should you just watch and see, or rush to the doctor? It always seems that whichever choice you make will inevitably be the wrong one…and more guilt rushes in.

Paula shares some great “rules of thumb” about handing guilt:

• You can’t ignore this pesky emotion, can’t will it away. Guilt simply is. So straight off, don’t think there’s anything bad or wrong about your feeling it.


• There’s good guilt and bad guilt. Good guilt is the kind that causes us to examine our behavior and make a change, if necessary. If you feel guilty because, say, you were impatient with a parent with dementia, it’s like a little poke reminding you to try a little harder next time because hey, patience really is a virtue. Unfortunately what eats most of us alive is bad guilt. Bad guilt has no constructive underbelly. Bad guilt makes you feel guilty about a situation that you can’t help (your parent has to move into rehab, for example) or that is actually a positive for you (you’re hiring home care because you can’t do it all yourself)


• Beware the oughts-shoulda-couldas. For caregivers, this refrain can sound like: “I ought to be able to handle this; I’m her daughter.” Or, “I shouldn’t feel so happy about going someplace without Dad.” Or, “I could have handled that better.” Things (and feelings) are what they are; stewing or denying wastes precious energy.


• Guilt creeps in when we discount ourselves. Ironically, selfless people tend to feel proportionately more guilt. Because they work so hard aspiring to an ideal way of doing things for others, they tend to ignore the inconvenient reality that they have to look after themselves all the more. They may even forget that they, too, deserve extras and shortcuts. Or, when they finally get around to (by choice or force) having a Calgon bath or lunching out with friends, it feels as alien as it does great. That’s a sign you probably need to follow your self care with more self care.


• Guilt loves high standards. News flash: Nobody’s perfect. No caregiver anticipates every fall or bedsore. Tempers boil. Germs sneak in. Bills slip through unpaid. Life happens, in other words, no matter how much you love the person or how much you feel you “owe” him or her. Aim to be a “B” caregiver instead of an A+ caregiver, and everybody’s going to be happier.


• No mom is an island. No caregiver, either. I think it’s no coincidence that most of the “happy guilt” that creeps into a caregiver’s mind follows having the load lightened by getting help. It’s such a persistent canard that it’s somehow a sign of weakness to ask for or find assistance, and from as many sources of help as you can locate or who will offer it.

When my kids were little I learned that, as a working mom with three little girls, guilt would be a part of my life. Somehow, just accepting that seems to make it a little less powerful, and maybe lets us get on with life and do what we need to do, in our very own personal style.

Family caregiving: when relationships add to the challenge

We’ve been discussing some of the most challenging aspects of family caregiving here among our team and we’re convinced that the relationship shift is probably right at the top.

Shifting from spouse and equal partners to care provider and recipient must be incredibly difficult. I know from my own experience that shifting from autonomous parent-adult child relationship to one where the parent is dependent on the child for care is challenging and disconcerting.

What about when one sibling sees the parent as smiling, happy and capable (the face she presents to them) while another sees a despondent, helpless elder (the face presented to sibling #2).

Then there’s the daughter that feels the need to resolve issues from childhood with a parent before it’s too late; issues that bring up long-buried feelings of anger, pain and helplessness.

I remember Emma who, suffering with advanced dementia, needed physical reassurance almost continually throughout the day. She’d hug us frequently, hold our hands and, in general, give and accept physical affection. I didn’t think much of it until one day her daughter came into my office and told me, “I don’t remember my mother ever hugging me as a child. She simply did not do that – ever.” It broke my heart to realize that this warm, loving woman had lived so many years of her life unable to give or receive affection from those closest to her.

As we’re working on creating materials to train and support family caregivers we’re curious: what’s the biggest relationship challenge you’ve experienced in caregiving? How did you resolve this challenge – how did it affect the caregiving experience?

Share your experiences with us, if you would. We’ll pass on what we’re learning.

Don’t parent your parents

Remember your teen years? Most of us cringe when we think of the relationship (or lack thereof) we had with our parents during those years. Some of us (not me, of course!) still have secrets from our folks about our adventures during those tumultuous years…secrets that, God willing, we’ll take to our graves!

So why would we want to revert to a relationship with our own parents that echoes those years? Why has our culture assumed that as our roles shift in our later years – as they do throughout life – we’re moving to a “role reversal?”

Our relationship with our parents is one of the strongest forces in our lives – from birth onward.

We’re 100% dependent on them for our survival in the first years of live. As we mature and naturally progress through the stages of life, our dependency grows less and less, until we’re fully independent adults.

Along the way, of course, the relationship is fraught with challenges. Not all parents are up to the task, either physically or emotionally. Relationships can be difficult or destructive instead of nurturing and loving.

Whether the parental relationship is one that is fundamentally healthy or not, many adults in their prime years are finding that the relationship shifts once again. From living independent, largely separate lives, they begin to become more closely intertwined as the child steps into caregiving or advising roles.

It is a shift in roles, but it isn’t time to start “parenting” your parents.

It’s a time to respect them as adults. Allow them to make their own decisions, even if those decisions are not what you’d prefer. To collaborate in making life-altering moves (like leaving a long time home and moving into a care environment) and decisions about care.

Certainly there are times when our parents are no longer able to make their own decisions because of cognitive declines, confusion or memory loss.

That brings yet another shift in the relationship – but one that still reflects the need to treat our parents as adults, not as children.

Adults with whom we have long relationships, often winding and complex.

Adults in whom we’re willing to invest time, energy and passion they move into the latter phases of their lives.

Finding our path to this shift in roles is often difficult. It might include false starts and a need, from time to time, to reconsider our fundamental values in the process.

Let me suggest these values: dignity (respecting privacy, decision-making and adulthood); autonomy (the right to make informed, independent decisions about one’s own life, health and circumstances); independence (as opposed to surrender of abilities and decisions); choice (the right to select what one wishes).

Clearly, when mental function is compromised by diseases such as Alzheimer’s, some of these values may shift. The value of safety takes precedence over nearly everything else, but we’re still shifting roles within the context of adults, not children.

I don’t know about you, but I’d pretty much do whatever it takes to avoid going back to a relationship with my parents that feels like adolescence – theirs or mine. I have no interest in reversing the roles (even though imposing a curfew on them might be a little bit fun)!

What I’m interested in is learning how we travel through this next phase of life together, strengthening the relationship we have developed over the years so that it is richer, fuller and even more rewarding to us all.

Assisted Living offers options to families

Johns Hopkins University Press just announced the publication of a new book about assisted living titled “Inside Assisted Living: The Search for home.” In it, the authors explore the premise of assisted living, which is that the social model of care leads to a higher quality of life than the medical model as nursing homes are designed.

In general, the authors found that caregivers in assisted living are “professional, pleasant, courteous and caring,” and that the people who live in assisted living are generally satisfied with their care. The authors interview elders living in assisted living, and explore with them issues like aging in place, financing and relationships.

As a recent owner and operator of assisted living and a long-time advocate of the social model of care, I believe that educating families about the benefits of assisted living is vital. Unfortunately, many professionals whom we typically turn to for advice about care, physicians included, don’t clearly understand assisted living or its benefits. They rely far too often on the historical solution: nursing care.

Consumers are making their preference heard, however. Today in the U.S., nursing home bed availability is holding steady or declining while new assisted living communities are being opened in every region of the country. Both families and elders clearly prefer living in an environment that feels more like home; less like a hospital.

If you’re just beginning to seek care for a loved one, be sure to explore assisted living options in your community. Because there is no national definition of care or services, you’ll need to ask questions to learn if this is an appropriate care setting for your loved one. Among the questions to ask, be sure to include these:

1. What is the limit of care my loved one can receive in this setting? Can he or she stay through the end of life here? Is hospice care available while remaining here as a resident?


2. What is the full cost of care, including rent, care, supplies or other expenses? Do you accept any third party payment from Medicaid if my loved one runs out of money?


3. How do you staff the caregivers? Are they trained and certified? What is the ratio of residents to caregivers during the day, evening and night?

Armed with this information you can begin to make an informed choice about assisted living as an option for care. Be sure, of course, to visit and talk to people living there, as well as other family visitors, if possible.

You may wish, as well, to read the book. According to Barbara Petty of Boom!, one of the reviewers of the book, it is “an excellent introduction for anyone who needs to acquaint himself or herself with assisted living in anticipation of having to choose assisted care for a parent or other loved one.”

Hospice: an important program to help family caregivers

Yesterday we signed my mother-in-law up for hospice care. She has advanced cancer and, with a recent surgery, is now failing quickly. While she may yet perk up and start eating again, she is not ever going to get completely well. It was time, clearly, to focus most specifically on comfort care for her, rather than rehabilitative care.

It’s an emotional time for the whole family, but we have some comfort in knowing that she’ll be surrounded by professionals who are trained to make sure she is pain free and well cared for, right to the end.

Even though I’ve worked with Hospice agencies over the years in a professional capacity, it was good to hear about the benefits of hospice from the family point of view. Here’s a quick summary of hospice and how it can help families:

Why hospice? Hospice is a federally defined and regulated program that is dedicated to provide comfort care to individuals who are not prospects to “get well”, but who are in a declining phase of their disease. Staff who work in hospice are specially trained to comfort both the patient and the family, and to help them accept and find value in their last days.

What services do they provide? Hospice provides a full range of services to individuals who are eligible. A hospice team typically consists of an RN assigned to the patient, aides to assist with bathing or other care, social workers to help with arrangements, adjustments and emotional needs, pastoral care, and more.

Where does hospice provide care? Many people have mistaken notions about where hospice is provided. It can be provided at home, but it can also be provided in an assisted living or nursing facility. Hospice won’t provide staff for the daily care needs of the person, but it will support those caregivers and provide special care to make sure the person is comfortable through the end of life.

What does hospice cost? Hospice is fully covered for individuals who are on Medicare. If you have other insurance coverage it will become secondary to your hospice program and coverage.

What does it pay for? Hospice covers the cost of all the equipment (hospital bed, walker, commode, etc.), medication related to comfort and all of the professionals who provide services. You do not have a co-pay or any other financial obligation when enrolled in hospice care.

When is hospice appropriate? If your loved one has a disease that is progressive, without the possibility of recovery, hospice may be appropriate. You may remember a time when a person had to be certified as within 6 months of death for hospice to be allowed; that time constraint is no longer the measure of eligibility. If your loved one has dementia, he or she may be eligible now, and may continue to be eligible until the end of his or her life. If a person begins to get better, hospice can be cancelled.

How do I get connected with a hospice agency? Talk to your loved one’s doctor and ask for hospice to be ordered. At least request a hospice evaluation to help you determine if hospice is an option for your loved one. Ask questions and learn as much as you can about the services you are eligible to receive.

For more information about hospice programs, go to www.hospicenet.org.

Cultural challenges in caregiving

If you’ve hired a private caregiver you probably know this already: the nation’s caregiving community is composed largely of individuals who are foreign born or from minority ethnic groups.

For many families, this is a challenge, but one that can be overcome.

Communication. Let’s start with the basics: communication. It’s tough to communicate with a caregiver who speaks limited English. It’s even tougher to ask this caregiver to communicate with an elderly loved one who may suffer from hearing loss, dementia or other conditions that impair communication in the best of situations. Yet caregivers from other cultures, who speak very limited English, can be compassionate, gentle, reliable sources of care for our loved ones. Try these approaches to bridge the communication gap:

• Make sure emergency communication is possible. Can the caregiver call 911 in case of an emergency and clearly express the emergency? Can she relay the address and phone number of the location? Ask, “Tell me what you would do if the oven caught fire and you needed to call the fire department.” Listen carefully to what the caregiver says, and coach her if needed until you feel comfortable with her ability in this area. Print the address and phone number of the location clearly, and post it near the phone. We all know the feeling of forgetting our own phone number in a crisis – and that’s without a language barrier.
• Let the caregiver know what you need to know each time you visit or call. Do you want to know how your loved one ate or slept? What activities he did during the day? How he seems to be feeling emotionally? Try creating a task sheet with each of these questions written out for the caregiver, and space for her to write in answers each day. Many foreign born individuals learn to read English but are hesitant about speaking it.
• Learn a few words in the caregiver’s language. Try hello, thank-you and good bye, for starters. As you learn to respect the language of your caregiver, she will feel more comfortable in communicating with you in your language.
• Encourage the caregiver to speak English by praising every attempt. Often people are reluctant to practice their English because they feel that their pronunciation is poor or they are embarrassed at their lack of skill. Try not to correct or criticize attempts, but praise them for each progressive success in the language.
• Help your loved one communicate. If the caregiver is not able to freely communicate with your loved one, recognize that your loved one needs other companionship for communication. Spend as much time as you can simply talking to and listening to your loved one. Include the caregiver when you can to help bridge the gap between the two.

Values and traditions. Today’s American values provide many opportunities for culture clashes with the values and traditions of a caregiver from another culture. These can range from the caregiver who is extremely uncomfortable speaking with a family member of the opposite sex, to the caregiver who comes from a background of strong familial responsibility and can’t understand or accept our busy lifestyle. Learn as much as you can about the values and culture of your caregiver by asking questions and researching to avoid cultural misunderstandings and conflicts.

Diet. Caregivers often work through mealtimes, especially those that work full days or overnight. Many families assume that caregivers will eat with the client in the American family style. Talk about food with the caregiver, and your expectations for mealtimes. Your caregiver may not feel comfortable eating with your loved one, and may have distinctly different food preferences. Cover these topics to avoid misunderstanding:

• Preparing food for your loved one. You may need to provide a menu and recipes or cooking instructions for even basic fare if this is not familiar to the caregiver.
• Mealtime. In general, elders eat better in a social setting. If your caregiver isn’t comfortable eating with your loved one at mealtime perhaps she would feel comfortable with a cup of tea, visiting with your loved one while he eats. Explore this with the caregiver.
• Preparation of the caregiver’s meals. Ask what the caregiver prefers to eat. Do you expect the caregiver to bring her own food? What about cooking meals in your loved ones’ home? Explore this, as some foods from other cultures can be distasteful during preparation to the American palate (especially to the older person).

Cultural differences between client and caregiver are facts of life for many families today. That doesn’t mean that care must be compromised, or communication limited. It does mean that we must learn to develop a greater awareness of the caregiver’s culture and sensitivity to working together for the best care of your loved one.

In the end, taking the extra effort can result in a rich, rewarding experience for everyone involved.

Book Review: Take your Oxygen First (Leeza Gibbons)

I love it when a package arrives in the mail for me – especially when it’s unexpected.

Last week, I received a surprise package that contained the one thing I love better than a surprise: a book. It was Leeza Gibbons’ new book, Take your Oxygen First. I received a copy so that I could read and review it for you.

I’m just starting to read the book, but already I love it. The forward, written by Larry King, contains this line that sums up, for me, exactly what caring for a loved one is all about:

“For those who are just starting out on the journey of caring for a loved one and for those already caught up in its tremendous burdens, seeing that light at the end of the tunnel can seem all but impossible. [This book] shows caregivers that the act of giving care can actually be a life sustaining and empowering experience for them, for their families and for their loved ones as well.”

I have to admit I wasn’t really sure what the title was about until Leeza explains at the beginning of Chapter 1, after a 30 page introduction to her family’s story. She reminds us that, at the start of an airline flight, during the instructions on what to do in case of an emergency we’re told to “put your oxygen on first, before the child you’re traveling with.” For Gibbons, this idea applies to caregiving, too:

“If you think about it for a moment, you realize that if you ignore your own need for oxygen, there is a good chance you may be unable to help your loved one, and if that happens, you may put both yourself and your loved one in danger of serious injury or worse…if you don’t take care of yourself first, you’ll be unable to care for your loved ones in their time of need.”

I’m looking forward to reading more in this book. I’ll share with you some of the highlights that I find. But for today, this is the message for family caregivers in a nutshell:

It’s a tough journey, but rewarding for those who travel the caregiving path.

Your first task – everyday – is to take care of yourself so you can continue to take care of your loved one.

These shoes are made for walking (keeping track)!

Here's a great idea - shoes with a built in GPS chip! (Story)

If you've ever cared for someone with Alzheimer's or memory loss who was a wander risk you know how stressful this can be. Literally - turn your back for a second, and the person can be gone. They're at risk and you're a nervous wreck.

Let's keep an eye on this product idea - it could be a real winner!

Sharing your story

Last week I traveled to the Minnesota “outback” to attend my grandmother’s 98th birthday celebration. Nearly 30 family members made the trip; some from as far away as Guam; others from the neighboring town.

My mother and aunt stayed behind after all the other relatives left to care for grandma. She’s been declining rapidly lately, losing her long-treasured ability to care completely for herself. My mom, 76 and lacking in strength and mobility, is caring for her mother, helping her transfer from bed to wheelchair and back.

The day we returned home to Oregon, my sister-in-law stopped by with the latest installment of the challenges facing my husband’s parents, both in their 90s.

It’s a story that most American families are living today. We’re living longer. We’re healthier, too, until we hit that inevitable wall of age and decline. Most of us help our own family members rather than paying someone else to provide care – or we have a combination of both, like my family.

I’ve been thinking a lot about stories lately. Howard Gleckman’s new book, Caring for our Parents, is based on stories of real people facing real crises in managing their needs during the last years of their lives.

Brooke Shields’ story, which I shared last week, is one of guilt and anxiety about placing a mom in a care facility.

My own story is one of a healthy, hearty family laid low by the classic phone call; this time from a paramedic on scene at the site of the traffic accident that claimed my father’s life and severely injured my mother. What followed were days that blurred into night as I traveled between hospital and funeral home, work and my children’s schools, and tried to keep it all in balance. My mother traveled the route that many do at the end of their lives, but she did it backward: acute care to skilled nursing care to assisted living community. We experienced it all – and it wasn’t pretty. Even though I’ve been in the business of senior care for the past 30 years, my eyes were opened to the family experience in a brand new way.

We helped both my mom and my in-laws move from their homes into retirement centers. I use the word “helped” loosely – in my mom’s case we physically cleared a home and 5 acres of land that my parents had lived on for more than 20 years (with all the accompanying stuff); in my in-laws case we simply nagged and nagged until they finally made the move. Both moved into lovely retirement communities – not nursing homes.

Sharing our stories not only helps us gain perspective on our own challenges, it can help us join forces in taking steps for change.

Maybe the change you need is on a personal basis – like the family members who don’t see the needs that you see.

Maybe the change you need is much broader – like the inability to pay for the care your loved one desperately needs.

Sharing our stories may be one way we can help each other. There are currently some 52 million family caregivers in America today according to caregiver.org. That’s a lot of stories – and a lot of help!

Guilt and the family caregiver

When my kids were little, they’d get sick and I’d start stressing. Should I take them to the doctor? Should I let the bug run its course?

Either option seemed to generate a bucket full of guilt. If I called in to the advice nurse the advice was – without fail – bring them in. I’d get to the doctor, and hear what sounded to my ears something like, “Don’t worry so much. All kids get bugs from time to time. Don’t be such an anxious mom.” The doctor would give me the “lots-of-rest-and-plenty-of-fluids” advice, and I’d be home thinking about the time I’d wasted and the expense of taking a kid to the doctor – again – who didn’t really need to go.

So the next time a kid got sick I’d say, “We’re going to just let this bug run its course. We’ll get plenty of rest and lots of fluids. I’m sure in a day or two she’ll be fine.”

A day or two later, the bug is no better so I finally take the child to the doctor. This time I hear, “Oh my god. Why on earth did you wait so long to bring the child in? She could have died!”

No matter which choice I made, I felt profound anxiety and guilt.

Caring for our aged parents seems to be much of the same: equal parts anxiety and guilt, no matter what we do.

As I read about Brooke Shields’ response to reporters finding out about her mom’s move into an assisted living community I thought about guilt.

It’s easy to let guilt guide our decision-making. It’s easy – but not wise. Just like my parenting guilt could have led me to take the kids to the doctor with each sniffle and sneeze, I learned to accept that either decision would most likely result in guilt. And then I made the decision that seemed, based on the facts as I knew then, to be the most appropriate.

With our aging parents we need to make decisions based on facts, too. We need to set feelings of guilt aside and ask ourselves – and our loved ones – what best meets their needs.

When my mom needed 4 people to help her to the bathroom, I had no option. I felt guilty about helping her into a nursing home, but I would have felt guiltier – and been a less responsible daughter – if I would have brought her to my home and then left her with no one to help while I attended to my own work and family needs.

While we’re not parenting our parents, we are making choices and decisions, often without their input, on matters that affect nearly every aspect of their lives.

Try these questions to help you check whether you’re making decisions based on fact – or on emotions like guilt:

Who can help? If your parent moves into a care community, someone will always be available to help. Often, more than one person will be available. Usually someone will be awake and ready to help even during the night. In a good care community, those helpers are trained and supervised by experienced caregivers. If you choose to leave your parent at home – yours or theirs – can they get the same level of attention and care?

What’s my role? Often I hear from family caregivers that are exhausted from nighttime demands, or from caring for their own family, doing their own work, and then trying to do the tasks their loved one needs. Sit down and chat? Go through an old family photo album together? Who has time for that?! If your caregiving tasks demand all the energy you have available, who can provide the companionship and company to your loved one?

Is there joy? I’m a profound believer in finding joy in caregiving. Yes, a lot of the care we provide to loved ones – whether 2 or 102 – not a lot of fun, but is necessary. At the same time, we find ways when we’re bathing the baby to laugh, make bubbles and sing together. What about when we’re caring for an elderly loved one? Is there joy being shared? Laughter? Find a way to discover the joy in the relationship, or get help with the tasks so you can find new ways to a joyful relationship.

Caregiving, like parenting, will naturally have moments of guilt, anxiety and despair. But if we’re caring because we’re family, caregiving can also be filled with deep satisfaction and joy.

Caring for a difficult parent – Brooke Shields shares

Her name was Kathy, and she visited her father, faithfully and unfailingly three times each week.
Her father had advanced COPD, which meant he lived on oxygen, and frequently had difficulty with even the smallest chore. I’ve heard advanced COPD described as a feeling of drowning, as breathing becomes more and more difficult.

Kathy watched her father struggle more and more to breathe with each week that passed. One day she stopped by my office; I’ll never forget our conversation.

“My father was an alcoholic when I was growing up,” she began. “I never remember a time when he acted like he even cared about us kids, let alone wanted to help us succeed in life.

“He was often violent and brutal to us. I lived in fear of him until I finally got out of the house to go to college.”

Kathy told how she had distanced herself from her father and refused to let him become a part of her own children’s lives.

And then, somehow, the hospital had found her and contacted her when her father was admitted from home, no longer able to live alone and care for himself.

Kathy became the primary family caregiver. She helped her father move into our assisted living community, and she faithfully visited him three times each week. None of us knew about her history until that day when she finally shared it.

We cried together as she talked about her experience with an alcoholic dad, and the strange twist life took leaving her with the responsibility to now ensure his care.

I’ll never forget Kathy’s story, nor her brave efforts to build a relationship with a father with whom she’d never had a real relationship before.

Over the years, though, I learned that Kathy is not alone. Many, many adult children have become steadfast, loyal caregivers to parents who were never dedicated caregivers to them as children.

Brooke Shield’s story of caring for her mother who now has Alzheimer’s disease is just one high-profile example. Shields shares her painful decision to place her mother in an assisted living community after a reporter checked her mother out for lunch last week, causing Shields considerable anxiety and distress.

Shields had apparently planned to keep her mother’s move to the assisted living community private. It is personal, but here’s my message to Brooke and to the many other adult children of individuals with high care needs and strained relationships.

Do not be ashamed of finding a good care community for your loved one.

Be proud that you care enough to find good care for your loved one. Know that what you are doing – caring for a person who may not have cared best for you when you needed her most – is honorable and right.

I don’t know if I could have done what Kathy did, investing so much time and energy on a parent who made my childhood a living hell.

But Kathy’s caring – and Brooke Shields’ actions – give me faith that we can overcome our history and build relationships with our aged loved ones, and become better, stronger people as the result.

Caregiving for parents: the blessing path

Here’s a great article on Oprah.com titled “How to care for your parents and keep your sanity.” Just the title alone got my attention. If you’ve ever cared for a parent, you’ll know that keeping your sanity is an important part of the equation. You know the days and nights that blur together, the feeling of uncontrollable laughter – or is it crying – when someone mentions the word “stress.”

The article starts with a story about the Navajo people, who believe “that caring for the elderly is a ‘blessing path’ in which the whole community should participate.”

If you’ve been reading my articles you’ll know that this is something I believe strongly in. I believe that, as caregivers, we need to access all the support and resources we can so that we can care with joy. We need to tell our friends, relatives and neighbors that we’ll take them up on their vague offers to “let me know how I can help” – and ask them to help in concrete, supportive ways. We need to hire, whenever possible, trained professionals to do the tasks so that we can focus on the relationship - something we can never hire anyone to do in our stead.

Martha Beck, the Oprah.com article’s author, ends with this very visual description of this journey:

“Rather than a long day’s journey into night, you’ll feel yourself making a long night’s journey into day: through fear and confusion to courage and wisdom. Receive this gift, the final one your parents can offer before they take off their shoes, jump out the window and fly home.”

Caregiving is a gift. It can be one of those gifts you’re really reluctant to open (how do I say thank you – and look like I mean it – for another poorly crocheted sweater?); or it can be a gift that offers you a new way to measure the value of days and the significance of life.

Family frustrations: caregiver challenges within the family

My sister and I have never been really close. She’s three years younger than me, but very different in her preferences and lifestyle. She makes a living training horses, for example; I’m essentially afraid of all big animals.

It shouldn’t have surprised me, then, when my mom needed lots of assistance after an accident that my sister and I approached it from very different perspectives. My mom lives close to my home (my sister lives two states away), so naturally many of the day-to-day tasks fell to me and my family. Somehow that didn’t stop my sister from weighing in on a regular basis. The conversations often went like this:

Mom: “Sharon came by and took me to the doctor this morning.”

Sis: “I hope she didn’t just drop you off in the waiting room!”

Mom: “Well, I’m perfectly able to talk to the doctor without her in the room.”

Sis: “Still, she should have stayed with you through the whole visit. I don’t know what she was thinking!”

Of course, what I was thinking was that I have three kids at home, a business to run, a house, a husband and a dog. If my mom can manage any aspect of her care needs without my hands’-on help, I’m going to step aside and let her!

Most families, I’ve discovered, have similar sibling dynamics. One sibling (or sib-in-law) becomes the primary caregiver, responsible for the regular tasks like transportation, shopping, laundry and more. Other sibs, often living across the country (or maybe just a few miles away) are content to let the one sib do most of the work.

You’d think that the other family members would recognize the hard work of the caregiving sibling and be profoundly thankful – and you’d be wrong. Most often, siblings who don’t have the direct experience don’t really know what is involved, or how hard the caregiving sibling works.

It’s easy to second-guess someone whose shoes you haven’t walked in. It’s not easy being on the receiving end, though.

What can you do?

1. Take it easy. Recognize that only you know how much effort is involved for you to keep all your balls in the air. There’s no way anyone else can know exactly what your life is like, so don’t expect them to know. Try to breath, smile and say, “I’d like to see her give this a try!”

2. Pass the torch. This is especially important for those distance siblings who say, “What are you thinking – moving mom into an assisted living center?! She can’t be that much care!” Invite your mom to their house, and let them have a chance to see first hand exactly what mom does need.

3. Gather support. If you’ve got other siblings who can rally to your support, pull them in. In my case, my brother offered me constant support while my sister second-guessed every move I made – or at least it felt like it to me. So, every time I finished talking to my sister, I’d pick up the phone and call my brother. He would patiently reassure me that what I was doing was exactly right, and we could laugh together at my sister’s many comments.

4. Hold a family meeting. Every family should sit down together and talk about big decisions, preferably before those big decisions need to be made. Involve the parents, if possible, and talk about choices for care (at home with help? At an assisted living center? Sell the house? Rent to a grandchild?). Make sure you talk about money, too, as decisions come with price tags that often are surprising. For example, keeping mom at home, no matter what, is fine if mom can afford to pay for around-the-clock-care (expect to pay several thousands of dollars for 24-hour in-home care), but if money is restricted other options need to be carefully considered. If you can do this together you may be able to avoid some of the worst family conflicts.

5. Get company. You can take comfort from knowing that you’re not alone – in fact you’re more like most families than unlike them, if you have some sibling discord. You might want to join a support group of other family caregivers (check with your local hospital) to share your frustrations and get support. You’ll not only get an outlet for your own feelings, you’ll gain new friends and helpful tips for survival from others in similar situations.

My sister and I are closer these days, but we still see mom’s care from very different perspectives. Most days, I can smile and nod when I talk to her. Some days it’s not so easy. But like all family dynamics, it’s a work in progress.

The waiting list opportunity

My mother lives in a retirement village in the suburbs of Portland, Oregon. It’s a community composed of seniors living in single-level duplexes spread over a several-acre campus. There are wide open green spaces, room to garden in front and back of most units, and a central building they call the “Ad building” (like on a college campus) where a lovely library, dining hall and activity spaces are provided.

My mother and father had been on the waiting list for 2 years before my father’s death. It took us several months after that, and many nagging phone calls, to finally get my mother to the top of the list and into an available unit.

Today, the village is sitting with several vacancies.

It’s not alone, either. According to the Milwaukee, Wisconsin Journal Sentinel today’s “double whammy of a sluggish home market and depressed stock prices” have left many seniors unable to make the move. It has also opened up space in the Milwaukee Catholic Home, a place that typically had up to 40 people on a wait list.

For seniors and their families that can make the move, this offers a unique window of opportunity to select the retirement or assisted living community that fits perfectly – with no waiting list delay.

Some seniors are renting their homes to younger family members while they wait for the market to improve so they can sell.

Others are simply pricing their homes to sell, even in this economy.

If you’re ready to make the move, you not only may find that you have a great selection of communities to choose from, but you may also have some unique bargaining power. Some communities are waiving their entrance fees, or allowing the person to defer paying them until their home sells. Others are offering move-in incentives. Look for incentives that help you defray the cost of moving your furniture and paying the first months’ expenses, as an example.

My mom wasn’t sure she was ready to move into the retirement village after my father died, but she knew she couldn’t stay in their farm-home alone. She moved, somewhat reluctantly, but now she says, without a doubt, “It’s the best move I could have made.”

It was the right time, to the right place for her. Perhaps this economic time will offer your loved one the right time to move into the right place for the next phase of their life.

Challenges with care eased by music

There’s a beautiful story in a recent New York Times article that illustrates just how important music is to the person with memory loss.

Tom was a wanderer. When his wife, Elsie, came to visit him at a care unit for patients with dementia, he would give her a perfunctory kiss, then wander off through the rooms and stare out the window. Elsie tried to walk with him and hold hands, but he would shake her off, leaving her heartsick.

A music therapist at the facility, Alicia Clair, was searching for ways to help couples like Elsie and Tom connect. Ms. Clair asked Elsie if she’d like to try dancing with Tom, then put on some music from the ’40s — Frank Sinatra singing “Time after Time.” Ms. Clair said recently, “I knew Tom was a World War II vet, and vets did a lot of ballroom dancing.”

As Sinatra began singing, Elsie opened her arms, beckoning. Tom stared a moment, then walked over and began leading her in the foxtrot. “They danced for thirty minutes!” Ms. Clair said. When they were finished, Elsie broke down and sobbed. “I haven’t been held by my husband in three years,” she told Ms. Clair. “Thank you for bringing him back.”

It’s a lovely story, and it illustrates the power of music in the lives of the person with memory loss.

I remember the first time I heard one of our caregivers explain how she got a client to bathe. This client resisted everyone’s effort to help him bathe, and could quickly become angry and aggressive if pushed. We’d all tried every approach we knew, and then Wanda stepped up.

An hour later, the client was bathed, relaxed and smiling. We had to know: how did she do it?

Here’s what she said: “I just started singing with him. We sang, and walked, arm in arm to the sink. The room was already nice and warm, and the towels, soap and washcloth were already there (I did plan ahead at least that far). We stood in front of the sink and I turned on the water and just started splashing my hands in the water, all the time singing together and smiling.

“Pretty soon, his hands are in the water, too, and we’re soaping them up, laughing – and singing. Next, we washed his arms, slipped off his shirt and washed his torso.

“We got through an entire sink-and-washcloth bath just by singing and playing in the water together.”

It was a beautiful, relaxing and enjoyable event for the caregiver and the client, rather than a frightening time for both.

Music has some wonderful qualities. According to the article, people respond to music even when all other forms of communication no longer work. “Music, unlike language, is not seated in a specific area of the brain but processed across many parts. ‘You can’t rub out music unless the brain is completely gone.’”

If you can’t carry a tune, there’s good news for you, too. People with memory loss don’t seem to be picky: just start the music and let the caregiving – and relationship nurturing – begin.

Caregiving at one degree of separation

My neighborhood has a women’s book club that includes about a dozen of us who live within 2 blocks of each other. Some of us have lived on the same street for more than 20 years. We’ve watched our children grow up together. We’ve celebrated birthdays, graduations, weddings and births of precious, new grandchildren together. When one neighbor’s home burned to the ground in the wee hours of the morning, the rest of us were there, almost before the fire trucks arrived.

We come together once a month to talk about our kids, our neighbors and – almost always – our book. We have laughed, cried and argued with each other.

Last night, someone asked, “How many of us are dealing with an aging parent?” All but two raised their hands. One neighbor has spent the last month with her mother who lives over 1,000 miles away, finally convincing her to move into a care facility for people with memory loss. Next month, she’ll return to actually make the move with her mom.

Several of us have lost parents over the past few years. We’ve spent hours at their bedsides, in hospitals, nursing homes and assisted living communities. We’ve shared our anger at “the system” and our frustrations at being classically squeezed between the needs of our children and our parents.

While we don’t see each other much outside of our monthly book club meeting, we do know this: when it comes to being a caregiver to an aged loved one, we’re all doing it. We do it alone, often, but we know we’re together in facing the challenges of family caregivers everywhere.

Last night when we took a count, it was clear that it’s something we are all doing today. And those that aren’t personally caring for an elderly parent know someone – first hand – that is providing this care. It’s a small comfort, but perhaps, ultimately, a large movement toward increased resources, improved quality of care and better options for our aged loved ones.

After all, we’re all at the frontline of this effort today.

Transitions: making the move

You’ve finally reached the point and the decision: you’re going to help your mom, dad or other family member move from home to a care community. What should you expect? What can you do to make the transition better for both of you?

Make the move easy. When you’re planning moving day, make sure you consider how to make the move as quick and easy as possible.
* Enlist the help of every family member possible.
* Offer your loved one an option – their choice – of staying while you move their belongings or going to lunch or for a ride, while other members of the family make the move.
* Minimize the amount of things moved. Many older people enjoy the process, once the decision has been made, of gifting their items to various family members, reflecting on the items heritage or meaning during the process. Ask your loved one to select just those things he needs for basic comfort and then either store or get rid of the rest. Most moves entail downsizing significantly, so start that process off right by not bringing too much in the first place. Besides, a less crowded space feels bigger.
* Move as quickly as possible, and then relax a bit with your loved one. Allow time in your moving day schedule for a dinner together, a drink or light meal at the end of the moving day. This is a chance to focus on the relationship, not just the task of moving. That’s important on moving day.
* Leave. There will come that moment when the work’s essentially done, you’ve relaxed and chatted a few minutes, and there’s not much more to be done. You may have that feeling like you’re leaving your child at daycare for the first time in the pit of your stomach, but you need to make your exit. You need to give your loved one time and space to begin his own journey of adjustment.

Visit. Some care communities may advise you not to visit for the first few days or even weeks. Unless this is a firm requirement, smile, nod, and plan your next visit. It’s important to your loved one to know that you haven’t done the much feared “dumped at a nursing home” maneuver. Your regular visits will reassure your loved one that you’re still going to be involved, even though his physical residence has moved. Make an effort to make your visits about the relationship, too, not just tasks. Moving your loved one to a care community can relieve you of many tasks; it will never take the place of your relationship, however. Focus on your relationship by:
* Bringing in picture of your children or other family members
* Sharing meals together when you visit
* Taking walks together or taking your loved one for a drive in the countryside
* Talking about your regular daily life and routine
* Encouraging other family members, especially youngsters, to visit regularly, too.


Get acquainted. On your visits, try to get acquainted with the staff at the new community. Meet the front desk people and the manager, the dining room staff and the housekeepers. Introduce yourself, smile and thank them for their work. You’ll gain the trust and respect of important people involved in the welfare of your loved one; you’ll also know who to turn to if something goes wrong. You may want to get acquainted with other residents and their families as well, a step that frequently speeds the settling in process.

Be patient. It takes time for a person to adjust to a move. Some people will adjust quickly; others will still be adjusting several years after the move. Be patient, and let your loved one adjust at his own pace. Complaints may be frequent initially, especially about food. Listen, sympathize, but don’t rush to the manager demanding changes unless you witness the problems yourself, too. Be patient with staff, too, especially in new communities. It takes time for everyone to learn their jobs and to do them flawlessly. Expect some level of human error - housekeeping that miss a garbage can, for example, or soup served a little cool, but expect excellence in any personal care or services that are delivered. If the community laundry is cleaning your loved one’s clothes, expect that some items will go missing, and other items might get shrunk or bleached. Keep your loved one’s irreplaceable clothes or jewelry at your house, or launder them yourself (be sure to let the staff know).

Tune in to your own reactions. Be aware of those moments when you feel a wave of sadness wash over you for the losses your loved one has experienced. Feelings of sadness and guilt are normal, common reactions. You might think, “I should have cared for her myself,” but don’t let these feeling drive you to actions that make matters worse. Often, family members who are racked with guilt turn their feeling toward those providing the care, relentlessly finding fault, blame or error. If you find yourself complaining on every single visit, check in with your own feelings to see if you may be turning your own feelings of guilt or anxiety toward the people caring for your loved one. If you think you might be feeling more than the usual level of sadness or guilt, get help. Find a counselor, pastor or good, patient friend to listen and help you work through your emotions.

Many people find moving to a care community one of the most difficult tasks they do as caring family members. But most find that they’re happier, healthier and better off because of the choice, often sooner than they would ever have expected. It just takes a little effort on your part to make the transition.

Caregiving takes an emotional toll on the whole family

My friend Vickie came into my office today for a meeting. We had a chance to catch up after the meeting and I asked Vickie about her current work/family situation.

“I’m working as a caregiver for my father-in-law these days,” Vickie said. “He has late stage Parkinson’s disease and requires help with everything. We have a lift to get him in and out of bed; I’ve got to care for his catheter; it’s just a lot of work.”

I asked her how many hours each week she spent helping her mother-in-law, assuming that she traveled to their home for a few hours each day.

“That’s the hard part,” she said. “They live with us. The caregiving never ends – I can’t begin to count how many hours each week I work.”

She was excited to be out of the house for the meeting as it was just about the only break she could see on the horizon.

As I listened to Vickie I heard what I hear so often from family caregivers: the work is not only physically challenging, but emotionally draining as well.

It’s hard to be the “rock” that your family relies on. It’s exhausting, no matter how much help you get from other members of the family.

Vickie’s husband, mother-in-law, son and grandchildren are all involved in Grandpa’s care. But at the end of the day, the person they all turn to is the one with the experience and training as a caregiver – Vickie. And of course, Vickie being the person that she is, worries about them all even when she’s not there.

I don’t really have an answer or a solution. What I know is that family caregivers need our emotional support, maybe even more than they need help with actual caregiving tasks.

They need us to thank them for their work, to honor and validate their importance in our families’ lives, and the contribution they make to society as a whole.

It’s not much, but it might make a difference for Vickie and all those other caregiving family members just getting through another challenging week.

Families need caregiver training to add skills to loving care

Caregiver training is the number one topic of conversation in our office lately. We initially developed our Caregiver Certification course for people working for in-home care agencies. In-home care is one of the fastest growing segments of all senior care, and our own division of in-home care is growing at a phenomenal pace.

We’ve also been hearing stories from individuals all over the world, seeking training to become experts in caregiving.

One school in Fiji is now using our online course to train students to become caregivers throughout the islands.

Today, I responded to a woman in Mumbai, India regarding this training. She cared for her own mother through the stages of Alzheimer’s disease, and realized that she didn’t have the knowledge and skills to provide good care. At one point, she says, “I could not take it anymore.”

As she searched for answers, she says, “It then dawned on me that I was basically giving in to the situation and giving up on her.” She determined to learn as much as she could about caregiving, and found approaches that have really helped her mom. Now she wants to help others with similar diseases, but knows that she is not fully prepared for this.

We hear stories nearly every day from family members who are realizing the same thing: they want to provide care, but they’re not trained or prepared to do it well.

Family members provide somewhere between 70 and 80 percent of all care to seniors in this country. Most are caring with their hearts; many realize they need more skills training, too.

For families – and professionals – training can add essential knowledge and skills to a caring, compassionate heart.

Family caregivers are heroes, worthy of their own stamp, and a whole lot more

Family caregivers are heroes, worthy of their own stamp, and a whole lot more A U.S. postage stamp honoring the more than 50 million family caregivers may be released by 2011, according to a news report last week.

“The objective of the campaign is to bring awareness of the issues facing family caregivers to the general public, healthcare professionals and public policy officials. A family caregiver is a relative or friend caring for a loved one who is chronically ill, disabled, or living with the frailties of old age and needs assistance. Family caregivers provide nearly 90 percent of the services needed by their loved ones. These services were conservatively valued at more than $375 billion in 2007,” according to the report.

The commemorative stamp is currently under consideration by the U.S. Citizens' Stamp advisory Committee, and you can sign a petition for support of the idea at: www.thefamilycaregiver.org/.

While the honor and recognition that a commemorative postage stamp brings is a wonderful thing, I must admit to thinking, “Most family caregivers could use a lot more than just a stamp!’ Caregivers need some practical help as well.

That thought led me to a new website I’d like to share with you: www.agingcare.com. It’s about as packed full of helpful information as anything else I’ve found, from care and housing suggestions to advice about money, legal issues, and care products. It also has a great community forum, offering family caregivers the chance to exchange ideas, tips, and frustrations with each other and with experts. Check it out!

It’s not easy being green

For some reason – maybe the fact that yesterday was St. Patrick’s day - that refrain from Kermit the Frog came to my mind.

In fact, it’s not easy being anything when we’re talking about family caregiving - except maybe "blue."

It’s not easy being patient – when you’re tired and simply want to get through the tasks to the end of the day.

It’s not easy being compassionate – when you have to wonder if the person in your care is really, truly doing his best.

It’s not easy being cheerful and fun-loving – did I mention being tired all the time?

A new email friend of mine shared with me that she has slept on the couch for the past 2 years so her mother can have her bedroom. Did I mention being tired all the time?

Yesterday was St. Patrick’s day. St. Patrick is the patron saint of Ireland, but we don’t really know much else about him.

Perhaps, like a caregiver, he worked in quiet solitude, helping others gain quality of life to the end of their lives.

Perhaps, like a caregiver, he was tireless in his efforts to bring comfort to those who were troubled, physically or spiritually.

Perhaps, like a caregiver, he sacrificed so that he could do what he believed, in his heart, was his God-given mission on earth.

The weary, devoted family caregiver today will probably never become thought of as a saint.

But then, I’ll bet Patrick never thought that would happen to him, either. I'll bet he never even considered that one day, people would wear green and celebrate his day.

Who knows? Maybe someday we'll all celebrate the true saints that are today's family caregivers.

Need a caregiver? Do's and don’ts of hiring unemployed family members to be caregivers for a loved one.

Most of our clients are in the business of providing care to seniors in assisted living or other community based care settings.

We’re hearing recently that the current high level of unemployment is causing some of our clients to lose their residents to family members needing work – and pay.

It makes sense, certainly, to pay a loved one who desperately needs the work and income to care for mom, rather than paying strangers.

It makes sense, at least, only if the unemployed family member is prepared, capable and ready to provide care.

If I were considering hiring an unemployed cousin to care for my mother, here are some of the questions I’d be asking:

1. Does she have the temperament to be a good caregiver? Is she patient, compassionate, and caring by nature? I might consider how she handles pets, children, friends and neighbors. People who are by nature good caregivers tend to be that way with everyone in their sphere of contact. You can tell the good caregiver in your family – she’s the one who remembers that you hate chocolate, and buys vanilla cake for the party. She’s the one who will rush to pick up the fussing baby, and gently rock it back to sleep. If you think about your relatives, you’ll know who would make the best caregiver, and who probably wouldn’t. That’s question #1.

2. Does she have the time to be a good caregiver? Just because a loved one is unemployed doesn’t mean that she will devote the time to your relative you need. Caregiving means making a commitment to the person receiving care, and to you. Just being present (and spending most of the day job-seeking online) isn’t caregiving. Neither is adding an elderly loved one to a family with children, no longer going to daycare to save money.

3. Does she have the training to be a good caregiver? Fortunately, this doesn’t have to be a make-or-break item on the list. Good caregiver training is available in many places in almost every community. Great books, guides and workbooks are available; there are even online courses for comprehensive caregiver training available and affordable.

These are the first three questions I’d ask myself if I was considering hiring a family member to care for my mom. It’s a good starting point for a very important decision.

When the "Pro" becomes the family caregiver

Wendy Finch is our Vice President of Business Development. She’s been with the company for over 12 years.

But two years ago, she became a family caregiver.

Her mom’s mother, Wendy’s grandmother, became ill and needed a little help with her daily activities. She wanted to stay at home – no, she insisted that she was absolutely, positively going to remain in her home.

Less than a year later, she fell and broke her hip. Against all of Wendy’s professional experience and advice, she was determined to go home.

Wendy’s mom quit her job to become her caregiver, but grandma needed 24 hour care, around the clock.

So the family began the challenge of finding and hiring personal caregivers.

They chose to hire caregivers directly, since they had an “expert” in the family. They’d save money that way, and be able to afford better care, longer, with the resources grandma had at her disposal.

What followed was a scene that family caregivers everywhere can relate to. The daily phone calls (“what do we do when she refuses her medicine?”). The no-show caregivers. The need to find qualified individuals to hire to replace caregivers who could no longer cover all the care needs.

Most of all, the exhaustion and the continual sense that caregiving is a job more challenging than raising a child. If, in fact, raising a child takes a village, caring for a beloved elder takes a full city of people, resources and energy.

Today, Wendy is the staunchest support of our newest online course, the Caregiver/Personal Care Aide Certification Course. She knows what caregivers need to know to provide high quality care, whether they’re related to the person or not. She knows that often – in the middle of the night, or the middle of the afternoon, caregivers are alone with the person in their care, and need all the help in caring and coping they can possibly get.

Wendy’s family, supported by paid, trained caregivers, cared for her grandmother right to the end of her life. She stayed in her home, just like she wanted. She was lucky, too, to be surrounded by family members who not only wanted to do the right thing, but who also had the training and experience to know what that right thing was.

The experience has helped Wendy better understand what other family caregivers are going through too. It’s no longer just a professional awareness; it’s personal, too.