New book helps families who are struggling to care for their aging parents

They’re your parents too! How Siblings Can Survive Their Parents’ Aging Without Driving Each Other Crazy This book by Francine Russo delves into the family dynamics that can create havoc as adult children come together to care for their aging parent(s).

“Siblings tell researchers that their siblings, (in a caregiving situation), are their greatest source of stress.”

If it feels like you are re-living your childhood all over again when you thought you had healed those wounds – you are not alone.  This book explores how (and why) the old patterns of a family unit play into the care of an aging parent, and how you can use the experience as an opportunity to heal.  This book is full of real life family stories, research and practical advice for siblings who must know that it shouldn’t have to be this hard.

I had the opportunity to interview Francine after reading her book – the interview follows this quote from Francine:

“People need to realize that this period where parents are aging and require care is not just a time of very challenging practical- demanding needs, but people will be helped by understanding that this is a family psychological and emotional passage for everyone in it.  Recognizing this will help in dealing with the practical side so much better.” 

Anne

When I first read the title, I assumed that you had been the hands-on caregiver – with a need to vent about what your other siblings did not do……but really the opposite was true – you were the long distant caregiver who was resented by your sister – the more direct caregiver.    I understand from the book that you are still working to heal your relationship with your sister.  How did that happen?

Francine

I did get to speak with my sister.  I made a profound apology to her.  Feeling terribly ashamed, I drafted and re-drafted an apology in my head.  One day there was an opportunity and I apologized and she accepted.  She admitted she didn’t actually want my help.  But during her high stress moments, people would say – do you have any siblings? She would respond “I may as well not have.” And the resentment grew from there.

Anne

What is the one thing you would have done differently…knowing what you know now?

Francine

Given her emotional support – which would have required changing our lifelong relationship.  I wasn’t in the habit of communicating with her very often.  We got our news of each other through my Mom.

I learned that so many caregivers did not want help – they don’t know themselves what they want but they do all want to be appreciated, valued and to not be alone.

I would have called her once a week – how’s it going?  How are you doing?  In my family we had a habit of making one another guilty.  I would have thanked her and shared my appreciation.  Then I would have asked – “what would you like me to do?”

Anne

In the time of your caregiving, would you have picked up this book and read it?

Francine

I wonder that myself.  I think I might have heard it as accusatory since my sister said it often.  But the sub-title implies that it is part of a conversation.  How siblings can survive the situation.  If I looked a little further I think I would have read it.

Anne

What is the most important message you would share with a family caregiver who is struggling to “get” another family member to be more involved?

Francine

Insight is key.  It really helps to think about the family and your interactions with them.  This is where siblings have to start.  You have to ask in a way that will get a positive response.  If you’re pissed off at your siblings – that will come across and reduce your chances of getting a yes.  Think about the fact that they don’t know what it’s like for you…..and you don’t know what it’s like for them.  Don’t use a list of “should’s”.  Everyone has a different relationship with their parent….none of us have a model for how to do this.  If you are not having success in communicating, work with a professional to help find a better way to say what you want to say.

Anne

I have worked with many caregivers over the years and I’ve interviewed and surveyed many former caregivers – all the former caregivers say they wish they had asked for help sooner, taken better care of themselves etc.  What do you think it will take to get that message to caregivers who are in the middle of it right now?

Francine

Many family caregivers think they are alone, that they will manage – but this is something they have to prepare for.

There needs to be significant outreach.  Professionals need to express very strongly that as parents get to an age where something might happen, it is time to sit the whole family down together and decide how various situations will be handled when they come up.  If the family doesn’t feel they have the information or the emotional strength to manage it themselves, they should have a professional run the first meeting.

Anne

Is there anything else you would like to add?

Francine

I am hoping people will read the book before the caregiving begins or gets intense – that when people read this they will be able to shift their perception sooner and not feel dumped upon.  Besides the issue of caregiving, there are many emotional flash periods.  The dynamics of who and how the power of attorneys are chosen both financial and medical.  Dementia poses very specific challenges for siblings. There are many opportunities to heal, many ferocious emotions – anger, resentment, wishing for more closeness.  If siblings can find ways to re-connect and forgive one another then they may be able to find some joy in this.

Francine

Retelling a snippet of one of the families in her book; Laurie moved back to her hometown to care for her father.  She tried to get her brother to be her partner in the way she wanted.  One day, when he disappointed her, she ended up hurting herself and as she cried, she had the realization that she was caring for her father and getting a lot of satisfaction from it.  She was able to address some old issues with her father and bring healing – these were her reasons for being the caregiver.  Once she realized this, she stopped pounding her brother with what he should do and he actually became more helpful.

You can find the book at Francine’s website:  www.yourparentstoo.com or on amazon.com

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Kids as Caregivers

By Kathryn Arbour

The latest statistics on this phenomenon come from a study done in 2005.   A staggering 1.4 million children were identified at the time, or three percent of the American population.  Those close to the issue suspect the numbers are actually higher and will grow as shorter hospitalizations, aging at home and the tough economy make even more demands on families.

In a February 23, 2009 article, The New York Times reported that other countries count caregivers of all ages in their census.  The 2010 U.S. Census does not have a clear category for such a count.  That said, awareness of the issue of children as caregivers is growing, especially among not-for-profit community-based organizations, such as United Way and local MS groups.

The American Association of Caregiving Youth (AACY)  is modeled after some successful programs in the U.K and Australia that include caregiving kids as “at risk” in their approach.  While not all children resist the role of caregiver – in fact, some relish it and thrive with the responsibility -, there are plenty of situations where the strains on both children and parents (or other adults who rely on kids in these ways) are unbearable.  Secrecy is a common denominator in families where a child is a primary caregiver.  Fear of intervention by Child Protection Services or other agencies keeps all parties silent.  In some cases, however, schools and the children themselves blow the whistle.  AACY wants to help in a proactive way before situations get extreme by making the responsibilities appropriate.  Connecting families to other services and options can be a collaborative effort among health care providers, local support groups and other caregiving organizations.

As the issue gets uncovered in the press and among bloggers , options will increase for kids who are caregivers.  In the meantime, AACY offers some tips for adults and children alike:

• Reduce stress by incorporating one or two several techniques every day.
• Contact AACY or another local support organization to talk over the situation with a neutral third party.
• Look for caregiving options.  There are a number of helpful professionals and websites that can help generate alternative approaches, including Toghers.com and Caring.com.

Karen Harwood, project coordinator of The Caregiving Youth Project in Florida observes that “we can’t change the situation for a lot of kids, but we can help them through it.”

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Kathryn Arbour writes and speaks on a variety of health related topics including, aging, caregiving, disabilities, independent living and mobility products. Find more of her articles at Examiner.com

Why health insurance reform really matters

Here’s a very excellent article by “CF Mother” on the reality of health insurance reform.  ”Ms. Mother” lays it on the line.  The current reform effort certainly has polarized the community, but I don’t think too many people have personalized what this all means.  I truly believe that when people reflect on this story and internalize what the impact of health insurance reform will have on our collective aspirations, families, business, and general quality of life that it’s hard to oppose unless you are exceptionally selfish, greedy or overly political.  This is the dialog that we should have – not the political, special interest hysteria that we see too often.

Harry, you shoulda done better

By Marc Silverman

I was impressed last week when the Senate agreed to open Medicare for those over 55. Well, that didn’t work out too well. I hear people saying the current proposed bill is a “step in the right direction,” and that “it’s better than nothing.” I’ve been listening and reading the opinions, and I’m not really sure. I want to believe that this legislation is well intended, but I’m not sure how it helps us get where we need to go, or whether it’s just a massive give-away to insurance companies. People between 55 and 65 could be charged exorbitant premiums to participate. Here’s the rub – the government will mandate that you participate, but they’ll only subsidize those earning the lowest amount. I’m afraid that middle class people between 55 and 65 will not be able to afford insurance.

As the proposed bill stands today, a couple between 55 and 65 earning $58,000 per year could see insurance premiums of $25,000 with no subsidy! And, the government can penalize them for not buying insurance! Also, as it stands today, the insurance companies will be able to charge whopping premiums for pre-existing conditions, effectively excluding those with pre-existing conditions. As Dr. Richard Reece, the author of “Innovation-Driven Healthcare: 34 Key Concepts for Innovation” says, “perhaps, a public backlash will occur when the public learns their premiums are going up, they are forced to buy insurance whether they want it or not, taxes begin immediately, benefits will be delayed until 2014, and savings aren’t realized until 2016 or later.”

Here’s an interesting view of Health Insurance company stock prices over the last few months. Clearly something pretty good is going on for them.

Coventry, up 31.6%
CIGNA, up 29.1%
Aetna, up 27.1%
Wellpoint, up 26.6%

United Health Group, up 20.5%
Humana, up 13.6%

Let’s hope for the best, and keep plugging. And, stay healthy!!

Caregiving and the Holidays

Guest blog By Kathryn Arbour

Families often gather and reconnect during the holidays.  For long-distance caregivers the time to be with aging parents or relatives can also be used as time to assess how things are really going.  The National PACE (Program of All-inclusive Care for the Elderly) Association, an organization committed to helping elders age at home and to reducing nursing home placement for the frail elderly, conducted a free national teleconference on December 16, 2009 to offer tips and insights on how to use time with elders this holiday season noting physical, emotional and behavioral conditions that may indicate a change in health status.

Cheryl Phillips, M.D., Chief Medical Officer of On Lok Lifeways and President of the Geriatrics Society, outlined five areas to observe when visiting elders this season.  While phone calls and other long-distance means help caregivers who do not live near their loved ones stay in touch, there is nothing quite like sitting in the same room to understand the status of those loved ones.

Make note of the overall appearance of the individual and home. Changes are more noticeable after a period of separation.  Dr. Phillips suggests looking for weight loss, appropriate dress and grooming, and clues for how the home is being kept.

Observe signs of changes in physical health. Assessing the physical status of elders can be challenging because there are often clusters of conditions, such as high blood pressure or diabetes, that may not have any outwardly visible physical effects.  Noticing any new visual or hearing problems, walking or balance issues, or incontinence issues, including problems with toileting will offer clues on what may be some bigger health issues.  Older seniors especially often speak about their conditions as complaints.  Listening for themes about chronic pain can offer indications of what conditions may have changed since the last visit.

Assess mental state.   Dr. Phillips reminds caregivers to look for signs of disorientation or forgetfulness, or an increase in these symptoms if elders demonstrated some of them previously.  Are they getting out or have they become more isolated?  Are there chronic problems with sleeping?  Too much or too little?  Depression among elders is commonplace and is often not diagnosed.  Other signs of depression are a decreased appetite.

Paying attention to nutrition.  Visiting with aging relatives around the holidays gives the opportunity to share meals.  How are they eating?  What is in the refrigerator?  Can they get to a grocery store regularly?  Who is preparing the meals?  If they eat out a lot, where are they eating?  Dr. Phillips shared a story about one of her patients who finally confessed that he goes to Taco Bell three times a day because it is close and cheap.

Ask about social activity.  Studies are clear that health is enhanced with social interaction.  Try to get a feel for who comes into your parents’ or relatives’ lives with regularity.  Do they get out?  Have people in?  Do they participate in activities, hobbies, events?  Perhaps they belong to a church or community center.  Can you assess when they went last?  What about driving?  This activity is a double-edged sword for elders.  They should not drive if there are safety issues.  Once they no longer drive, how do they stay connected to outside activities?

Using holidays not only as a time to reconnect with family, but also as an opportunity to see for yourself what is going on with your aging relatives can bring peace of mind and action, if needed.

Consult these resources for more ideas:

Patients and Families ,   a virtual tool for staying connected with family members, neighbors and health care providers while caring for a loved one.

Toghers, a virtual caregiving resource with practical tools and tips for caregiving.

Doctor Marion , a site dedicated to elder care and caregiving.

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Kathryn Arbour, founder andPresident of Capabilities and Capabilities.com with products and services for elders, people with disabilities, their families and caregivers, writes about caregiving, aging, mobility and independence in several online venues.  See more at Examiner.com as the Disability Examiner ,  Mobility Products Examiner , and Senior Care Examiner

Make your Home Friendly Again

Patients+Families is pleased to have as guest blogger this week, Kathryn Arbour, PhD.

Kathryn writes in a number of online and print venues on topics about elder issues, aging in place, mobility, and independent living. Kathryn also founded and operated Capabilities and Capabilities.com, with retail products focused on Boomers and their families, seniors, caregivers and people with disabilities.

MAKE YOUR HOME FRIENDLY AGAIN

By Kathryn Arbour

When do our homes turn against us? It starts with small things – opening jars, turning door knobs, bending and stooping to reach for dishes. We adjust easily to this small stuff, despite the grumbling. There are tools galore readily available to assist with these day-to-day activities.

When considering remodeling of your kitchen, include adjustable cabinets and countertops. This approach will give the flexibility you might need later when reaching, bending or perhaps even standing become more difficult or impossible. You will avoid falls and other injuries by taking care of these impediments in your home proactively. Our patience diminishes when we realize how much harder it gets to maneuver around the bathroom, especially getting in and out of the tub. Most of us just ignore the aches and pains, believing we will “know” when things get too dangerous. It took a scary incident for my own mother years ago to realize she had not taken things seriously. She got stuck in her own bathtub! The fear and embarrassment convinced her that it was time to make changes in her home. There are many families making changes sooner rather than later now, installing grab bars, tub lifts, walk-in safety tubs, wheel-in showers. One enterprising family completely redid both bathrooms in their home in anticipation of wanting to age gracefully there some day without fear. Stairs become mountains to climb as knees and backs get more ornery. Some say they just do not go to those parts of the house anymore for fear of falling.  While rearranging your daily life to accommodate a physical condition is a typical, and sometimes necessary response, why not consider another strategy? Stairlifts offer an affordable solution to “being unlimited.” Professional installation ensures accessibility to all areas of your home, keeping you in charge of your life, and less afraid. Winter is the perfect time to consider making some changes in your home and considering the addition of a few products to enhance lifestyle while being safe and sound. When you consider how passionately most people feel about being in control and wanting to stay home on their own terms, making these home modifications suddenly feels like a very smart path to follow.

Good job, Harry

By Marc Silverman

Tuesday night the Senate’s new “Team of 10” reached a consensus on the healthcare reform debate.  Their consensus essentially eliminates the “public option” demanded by the liberals and abhorred by the right, but it includes a number of items that will help a lot of people.

The “broad agreement” that Harry Reid announced is far from perfect (and the devil is in the detail, etc.), but it’s a reasonable step in a very unreasonable environment.  It’s too easy to be defeatist nowadays.  I hear pundits (on the left and right) saying that the “Senate is broken,” implying that they cannot reach a consensus to pass legislation to help the public.  I get a kick out of the many professional opiners who talk about the absolute requirement for a “comprehensive” (perfect) healthcare bill before they’ll endorse it.  My guess is that many of the professional opiners and “experts” are employed and participate in a group health insurance plan.  Escalating costs notwithstanding, they’re probably pretty “okay” with their current coverage.

It’s time to grasp what “un-/under-insured” means to millions of Americans today.  It’s not an abstract concept – it’s devastating.  It’s time that the opiners, experts and legislators came to grips with the implications of this tragedy.  It’s time to leave the salon and grasp what a cancer diagnosis means to a un-/under-insured family.

Good job Harry. I never thought I’d hear myself say that.

“Seniors Who Use Internet Could Reap Health Benefits, Studies Show”

By Gordy Van Dusen

In this recently published article in iHealthBeat the author, George Lauer, provides evidence that a “wired” senior is a happier, healthier senior – less depressed and more cognitively and socially engaged.  This will also ultimately equate to an improved quality of life not only for the senior but for their family members as well.

“David Lindeman, executive director of the Center for Technology and Aging, said when seniors begin seeing “real-life applications for health IT that actually improve their lives,” barriers to technology go down and adoption goes up………Five or 10 years ago, it may have been easy to say older adults were uncomfortable with some of the new technology, but that’s changing on many levels. In addition to the issues of social connectedness and communication, you now have a whole new array of health benefits and those are about to expand with the possibilities of smart phones and mobile technology. That’s going to be huge,” Lindeman said.

The article sites several studies that are demonstrating the real health benefits to seniors who embrace IT, eg use the internet.  And because of the relatively low internet usage rates by seniors (~42% of Americans aged 65 and older according to the Pew Internet & American Life Project), researchers said the opportunity for better health outcomes from expanded Internet adoption among seniors is substantial.

At the recently created Center for Technology and Aging, they have identified seven areas in which they will focus their research and funding efforts regarding a senior’s engagement with technology and their health.  These include:

• “Medication optimization — technologies designed to help manage medication information, dispensing, adherence and tracking;

• Remote patient monitoring — technologies designed to manage and monitor a range of health conditions;

• Assistive technologies — devices and equipment that help individuals perform a task or prevent injury;

• Remote training and supervision — technologies used to train and supervise health and long-term care workers, and the potential for continuing education and quality assurance;

• Disease management — patient-centric, coordinated care processes for patients with chronic conditions and conditions that have a significant self-care component;

• Cognitive fitness and assessment — technologies that measure cognition or include cognitive practice regimens; and

• Social networking — technologies that enable the building of communities of interest that help older adults communicate, organize, and share with other older adults and care providers.”

No doubt families can also do their part to encourage their elder parents, much as they did with us as children, to venture out beyond their comfort zone.