Carol-PR-Photo-10-1-11-SMALLERI’ve always sung with the music in the car. I’ve been that person you pull alongside at the intersection who is in the car alone, mouth moving, singing away. And yes, people have made fun of me. It hasn’t stopped me. I know the words to thousands of songs, maybe tens of thousands.

I don’t know if I sang too much or sang the wrong way, but in the past few years, I have lost my singing voice. Like Julie Andrews, sort of, without the fame, fabulous singing career or new turn as a children’s book author.  Some people are over-achievers.

This loss has been a huge blow to me personally, regardless at the relief of my passengers and the drivers around me. While there is probably some surgical procedure that would help, I’m not willing at this time to go that route. Instead, I’m now listening to the radio and to all of the music I have stored on my various devices. It’s a whole new world.

I have rediscovered why I enjoy the musicians in my collection. I hear the voice, the instruments, the highs and lows of the song very clearly. I find it almost equally satisfying and it brings a smile to my face.

Caregiving can be like that. We experience the changes in our loved one, the disease, this different relationship first as a tremendous loss, and we wonder how life will go on as we know it.  We are sad and we try to get back to where we were. But at some point, we face the facts. There isn’t any going back.

We can choose to go forward. As we say in our Stress-busting Program, we may not be able to change our caregiving situation, but we can change how we react to it. We can reframe our situation, and look for the positive.

I have recently witnessed this change as well. When my mother who has Alzheimer’s was living at home, her behaviors were very difficult to manage. My father was exhausted trying to keep up with her. Now that she lives in the memory unit of a residential care facility, my father can see my mother again. He can see past the disease to the smile on her face, to the satisfaction in being in each other’s company. Sometimes, they even hold hands, which I haven’t seen them do in years. This brings a smile to my face too.

Do we all have down days when we miss singing or miss the loved one as we knew them? Sure. It happens all the time. But we can rediscover the small things in life that can still make us smile and bring warmth to our hearts. That’s caregiving.

Carol Zernial is Executive Director of the non-profit WellMed Charitable Foundation. A noted gerontologist, Ms. Zernial also serves as Chair of the National Council on Aging Board of Directors.

Carol-PR-Photo-10-1-11-SMALLERFor the past 30 years, professionals who work with the elderly and with caregivers have been preparing for the aging of the baby boomers, the 74 million people who are now turning 65 at a rate of 10,000 every day. It’s time to go back to that future of aging and see if we are indeed ready. What did we get right over the past 30 years? What do we need to rethink? And what is new that we need to consider?

First, our concern about the lack of retirement savings for upcoming seniors and boomers was well founded. The Insured Retirement Institute says that only 55% of boomers have any dedicated retirement savings besides Social Security. Of these, most have less than $100,000 saved, which averages only $7,000 a year for an average retirement of 20 years. Can most of us get by on only $7,000 a year? The financial status of aging boomers may be the defining issue of this generation, impacting policy, eligibility, and effectively ending the school-work- retirement life cycle. As well-known gerontologist Ken Dychtwald has been saying, older people will want to continue working and many will need to continue working. This shift may go beyond the older generations. As younger people reject the notion of longer work hours and strive for work/life balance, voluntary episodic work could reshape our society.

Equally important is the fact that we still don’t have a comprehensive long-term services and supports system. As an example, five members of my family currently live in residential care facilities at a cost of $32,900/month or $394,800/year. With our combined family resources, we can’t afford this for five people. The 100% private pay or 100% public pay system is unsustainable.

We must address the extremely low wages paid to working caregivers to ensure we have an adequate and capable Care Force for these millions of boomers. They are predicted to be less healthy and more costly to the health care system over the next 14 years than the previous generation (United Health Foundation). Half of all direct care workers rely on Medicaid and food stamps. Their pay is as low as $16,240/year to take care of our families, and their own. Unpaid family caregiving as the backbone of our long-term care system also takes a heavy toll. The average woman who stops working to care for a family member loses $303,000 in wages and benefits over the course of her lifetime.

So what do we need to rethink? Leo Buscaglia, the author and speaker who used to tell us to hug each other often, once said that the words “and they lived happily ever after” are the most tragic words in all of literature. In our American culture, “helping seniors remain independent in their own homes” may be our tragedy. A recent study of 3 million people conducted by Brigham Young University now says that loneliness and isolation are the new smoking, and that social isolation can be a more powerful predictor of heart attack and stroke than high blood pressure or obesity. And, a person who feels lonely is at as high of a risk as someone who actually lives alone without social interaction. Is our push to help people remain isolated behind the walls of our homes causing greater disease, disability, and unhappiness in our older years?

We also need to rethink traditional aging services as provided by the Older Americans Act. Boomers and seniors expect consumer-focused services and choice. The inflexibility of the current system does not serve us well. The middle class also suffers under the current system. People with very low incomes have access to Medicaid and are eligible for services, and people with higher incomes can pay for their own. Familes in the lower middle class are not eligible and can’t afford to pay. They are almost literally a dying breed.

If we look at the new possibilities that exist, technology is the new frontier. Smart phone technology is the most rapidly adopted technology in the history of the world. It may be able to foster interaction and help people to access the services they need from wherever they are. We don’t want to lose in-person interaction, but the ability to access tailored goods, services, social interaction and entertainment in the palm of our hands is a game changer.

We know the future hasn’t been written yet. The doom and gloom scenario that seniors and boomers will drain the resources of the country is only a possibility if nothing changes – and things are already changing. We know the secret: the increase in older people has the potential to be an increase in time, talent and resources that can go to help so many of societies issues. Long life is a gift to be discovered and used to advantage.

We have a short window to plan our glide path to the future of aging and caregiving right now. Or, as Yogi Berra once said,” If you don’t know where you’re going, you’ll end up some place else.”

Carol Zernial is Executive Director of the non-profit WellMed Charitable Foundation. A noted gerontologist, Ms. Zernial also serves as Chair of the National Council on Aging Board of Directors.

Carol-PR-Photo-10-1-11-SMALLERMany of us will rely on the services of a paid caregiver at some point during our caregiving journey. These are individuals hired to come to our homes and provide light housekeeping and personal care services for our loved ones. We might hire them directly or find them through a home health agency. They are certified nursing assistants who work in assisted living facilities and nursing homes. They may provide hospice services to those in the final stages of life.

We entrust these paid direct care workers with the most important people in our lives: our mothers and fathers, husbands and wives, grandmothers and grandfathers, and other family members who are ill, fragile, or have a disability or special needs.

A Huffington Post article stated that despite decades of advocacy by direct care workers themselves, care work is still seen by too many Americans as somehow “less than” other forms of work. A board member from the Direct Care Alliance said, “Direct care work is expected but not respected.”

Almost half of all direct care workers rely on public benefits such as Medicaid and food stamps. And 89% of them are women. According to the Bureau of Labor Statistics, personal care aides are paid as low as $16,240 per year. The lows for home health aides averaged less than $16,410 per year, or $7.89 per hour. For pay that is barely above minimum wage, they are asked to care for their own families as well as ours.

A trade association calls direct care work back breaking and mentally heart-breaking.

We have to start investing in what Caring Across Generations calls our “Care Force.” The Care Force includes unpaid family caregivers like those of us who need Social Security to recognize our quarters of work in the home, taking care of our loved ones. Or tax breaks for the more than $5,000 a year that family caregivers contribute out of our own pockets.

It also includes paid direct care workers who are the working poor. This matters to us and our loved ones, because the true cost of low pay is high turnover, inability to attract people who want to do this labor of love, and a future where there simply won’t be enough family caregivers or paid caregivers for all of us who will need care.

Caregiving in this country matters. The people who need care matter. It is time to put our heads and voices together to change conditions that don’t reflect the importance of this work that for many of us is a sacred task.

Carol Zernial is Executive Director of the non-profit WellMed Charitable Foundation. A noted gerontologist, Ms. Zernial also serves as Chair of the National Council on Aging Board of Directors.

Carol-PR-Photo-10-1-11-SMALLERFor many of us, caregiving is a privilege and an honor. We run into the burning building to save the person who would have done the same for us many years ago when we were younger.  Our parents, our grandparents, aunts, uncles and spouses are not just a part of our lives – they are part of our lifeblood. We are family.

Family caregivers bolstered by faith, bonded by family, and acting in love are possibly the hardest to reach of all caregivers. They are the last to accept help. We don’t really believe we need personal space or have time to take care of ourselves. We’re doing what we’re supposed to do.

Our good friend, noted psychologist Dr. Jamie Huysman, talks about the legs of the caregiving stool: emotional, physical and spiritual support. We can only be effective caregivers when we are in balance. If we don’t have enough of any of these supports, we are off balance. Worse, our loved one can feel it – and they feel off balance too. Have you ever had your child or your pet avoid you or leave the room, because you were upset about something? Even if your emotions weren’t directed at them, they knew something was wrong.

If we care for our loved one simply because we are family and caring for one another is in our DNA, then it is our responsibility to take care of ourselves. It is our responsibility to ensure that we get the help we need so that we can continue caring for our loved one. Otherwise, we run the risk of being forced to place our loved one in another setting outside the family. And giving up on our responsibility is not part of our family culture.

Wouldn’t we like to better understand how to safely transfer our loved one from the bed to the chair, or to give them a bath? Wouldn’t it be helpful to know which legal documents we need to take care of financial issues and health care decisions? Wouldn’t we like to know what comes next in this disease so we know what to expect and can be ready? Wouldn’t it be nice to feel good about another day caring for our loved one instead of feeling tired, angry, or depressed? There’s always room for improvement. Four hands and two heads are better than one.

The famous song goes,” All we need is love.” And yes, love goes a long, long way. But even the strongest love can be worn down by adversity and difficult times. Let’s love our family members enough to do the right thing for them, and that means getting the right kind of help for us.  Let’s think about the kind of help we would want our loved ones to have if they were in our position – if they were our caregiver. After all, we’re family.

Carol Zernial is Executive Director of the non-profit WellMed Charitable Foundation. A noted gerontologist, Ms. Zernial also serves as Chair of the National Council on Aging Board of Directors.

Carol-PR-Photo-10-1-11-SMALLERI’m mad! I’m sure it happens to all caregivers.  I’m not upset with my family member who needs care. No – I’m mad at the “caring” professionals who are supposed to be helping us: the doctors, assisted living and nursing home staff, the hospital staff and the home health agencies. Has this ever happened to you?

Has the day shift in the hospital ever told you one thing and the night shift said something completely different? Have you ever gotten disturbing news only to be told, “Oops, I guess we read the wrong chart”?

Let’s talk about the assisted living and nursing home professionals who say that they are trained in working with frail seniors, and tell us that after a patient has fallen 2-3 times, they’ll do something about it. Would that be before or after the broken hip and black eye?

For those who say they understand dementia and think that refusing to bathe is an unusual “problem behavior,” I question their expertise.

And after a comedy of errors that is anything but funny, have you ever heard that tone in the voices of the professionals, the one that lets you know you have become the most dreaded of all creatures – the “non-compliant caregiver.” You know us because we ask too many questions. We show too much interest. We care too much.

We hear things like, “We know you’re loved one better than anyone. You need to trust us.”

Really? Because I’ve know this person all of my life and you’ve only known them a few days.

So for all caregivers who have ever been stuck on the merry-go-round of mistakes, errors, questionable professional decisions, and care that more closely resembles nonchalance, I understand your frustration, fear, anger, and uncertainty.

But we can’t give up. We can’t go it alone. We need those caring professionals to really care and really know their stuff. I propose a truce with them that works like this: If you will treat my family member like a member of your family, I’ll get out of your face.

Carol Zernial is Executive Director of the non-profit WellMed Charitable Foundation. A noted gerontologist, Ms. Zernial also serves as Chair of the National Council on Aging Board of Directors.