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.