Gail Sheehy Addresses Caregiver Stress

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

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

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

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

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

Three simple steps to optimal caregiving

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

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

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

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

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

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

So we broke it down to three key things:


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

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

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

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

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

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

Caregiver Stress

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

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

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

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

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

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

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

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

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

Do you feel tired or exhausted much of the time?

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

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

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

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

Do you have problems concentrating or remembering things?

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

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

What can you do?

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

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

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

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

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

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

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

Picnics in the park

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

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

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

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

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

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

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

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

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

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

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

Respite for family caregivers

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

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

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

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

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

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

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

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

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

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

But there is help. There is hope.

In the end, there is joy.

Caregiver tip of the day – slippery jammies

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

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

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

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

In your own pair of slippery pajamas.

Waiting to Exhale – The final stage of caregiving

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

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

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

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

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

No wonder she hesitates to share her feelings about caregiving.

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

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

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

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

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

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

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

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