Calling all Caregivers

In our caregiver support group we often talk about our caregiving experience as a journey.

Some days, you’re slogging through some pretty deep muck. You feel like you’re battling to get anything done. You feel like you’re doing nothing but battling with - or for – your loved one.

Some days, you’re hiking up a steep hill in shale. It takes every bit of effort you have to move a few steps forward – and then you slide almost all the way back to your starting point. The saying, “Three steps forward and two back” feels like positive thinking.

Then there are those rare days when the sun breaks through the clouds and you feel blessed and so very privileged to be able to care for someone you love.

In our group, we listen to other people’s stories. We reassure them (“No, you’re not crazy!”) and we reassure ourselves (“At least I don’t have to deal with THAT!”).

If we’re lucky, we find a lot to laugh about, from one caregiver’s story about her mom, (“So then she said…”) to another’s joke (“You know you’re crazy when…”).

By the end of the evening, we’re all glad we came. We’re relieved that we could share our challenges, and listen to others. We feel a little glow inside as we realize that we’re not alone on this treacherous journey through uncharted land.

I hear from families who can’t get to the support groups. Often, they’re the ones that could use the support and encouragement the most. They have no one to give them a little break; to stay with the person in their care so they can get out and get refreshed.

For the past year, I’ve been working on a national family caregiver’s support team, developing a website that will be fresh, interesting and unique. It is out intent that this site provide some relaxation and fun for family caregivers, as well as a place they can meet others who are traveling similar journeys, and help share the load.

We’re looking for individuals to help us – to join in building a community of people who support each other in caregiving.

Perhaps you’re in a business that serves caregivers – you’re invited to share your expertise and wisdom.

Perhaps you’re great at sharing your own stories about caregiving, or at simply listening.

Whatever your gift, please join us in building this community. Email me (Sharon@aquiretraining.com). I’ll send you details and welcome your help.

When it comes to caregiving, like so many of life’s most challenging tasks, it does, indeed, take a village.

Want to stay in your home? Check out new technology!

Several years ago the Center for Aging Services Technologies, in conjunction with Intel, created a video imagining what digital health and wellness monitoring for senior adults might someday look like. People got excited about this – and kept asking where they could get it.


“It’s all available technology,” says CAST representative and Intel aging technology expert Eric Dishman. “But none of it is readily available today exactly as it is shown in this video.”

That was then.

Today, technology to aide seniors and their caregivers is a fast growing industry. It’s diverse and, if baby boomers are true to form, it will soon be as pervasive as the internet.

Earlier this week a feature story on National Public Radio, “Wired Homes Keep Tabs on Aging Parents” showcased a video monitoring system offered by ResCare, a national in-home care company that provides “telecaregivers” for clients. While it might feel a little invasive at first, the peace of mind provided by having someone visually checking in with a loved one is worth it, at least for the family in the NPR story. Noteworthy as well is the unexpected benefit of this service: social contact and companionship for the elder.

More and more Americans are living longer, healthier lives. Most want to stay in their own homes as long as possible. While this may be our preference, it is often not the optimal situation in light of brain science.

“Our brain is designed for us to be connected to other people – our ‘tribe,’ if you will,” says brain development education consultant Joseph Christensen, founder of Brain Development Etc., and part of the aQuire Training Solutions’ development team. “When we don’t have our tribe around us we are very stressed and don’t know why. Chronic stress, of course, can lead to a host of other problems such as depression, anxiety and social withdrawal.”

Nutrition and exercise are also keys to long, healthy lives – and brains. Social isolation tends to negatively impact these areas as well.

With the ResCare program, even elders living alone at home can gain companionship and human contact. This alone might be the factor that allows them to continue to live in the place of their choice – their home. Certainly combining this program with other home technology programs (like fall detection monitors, medication reminder systems and more), we begin to approach the world where technology, in all its forms, helps us continue to live healthy, productive lives to the end.

Caregiver Reality: Sometimes it stinks

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

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

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

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

Proudly.

Unabashedly.

Sometimes badly.

More often than I care to admit, reluctantly.

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

He is my responsibility.

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

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

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

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

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

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

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

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

Dorothy Mayer

Reduce the Risk of Falling

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

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

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

Gail Sheehy Addresses Caregiver Stress

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

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

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

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

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

Three simple steps to optimal caregiving

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

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

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

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

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

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

So we broke it down to three key things:


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

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

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

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

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

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

Caregiver Stress

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

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

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

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

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

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

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

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

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

Do you feel tired or exhausted much of the time?

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

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

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

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

Do you have problems concentrating or remembering things?

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

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

What can you do?

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

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

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

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

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

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

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