Thursday, September 24, 2015

There’s No Place Like Home – Part 1

If you ask people the question, “Where would you rather be, at home or in a nursing home?” the response will come back overwhelmingly “At home!” 

If that’s you, you should read on.  Because if you really want to stay at home, it will take more than clicking your heels together three times, while you chant, “There’s no place like home.”  If you are going to succeed, you need to put plans in place now.  Otherwise, when a crisis develops, your children or next of kin or a case worker from some government agency will swoop down and pack you off to the nearest nursing home.  That crisis may be many years off, and we know it’s hard to think about a time when we are not fully in control of our lives, but this is the time to start planning.

Why It’s Good to Stay at Home

Let’s start with why it’s good to stay at home.  There are the obvious reasons.  You have created a place where you are comfortable, and you get to make all of your own decisions.  Your home reflects who you are, and you like being around all the furnishings, tchotchkes, and photos that are rich with memories.  But more than that, people really do better if they can stay at home.  There is no one telling them when to get up and when to go to bed.  They can stay more active, doing all the little things around the house.  When people don’t have beds to make or meals to prepare (or even heat up food in the microwave), they tend to decline in daily functioning.  This can happen at home, too, but having routines helps keep people involved and active longer.  They are in control of their life and that helps them keep going, too.

What It Takes to Stay in Your Current Home

While it is easy to imagine staying in your home, it is harder to think about what your life would be like if you become frail or disabled in some way.  The key to staying at home is making it possible to continue living there even if you become limited in the things that you can do.  That’s where planning comes into play.

We have organized our discussion around 3 questions.  The answers to these questions will help you decide if you want to remain in your current home, move to another home, or move to housing designed for older persons that take care of these potential problems for you.  We will address in the next blog some other issues about staying in your own home, and in later blogs the pros and cons associated with other housing choices.

1.     Is your current residence the right kind of place for you to live for a time when you might have difficulties getting around? 

Take a cold, hard look at your home.  Some homes are frankly not good places to grow old.  We love our house, but it is not a house that can be adapted to meet our needs should we become less mobile or, ultimately, frail.  Here are some of the points to consider.  Can you live all on one level without going up and down stairs? (This could be important if someone fractures a hip.)  Are there steps to get into the house? (A few steps can be modified by adding a ramp, and sometimes a wheelchair elevator can be added.) Is there a walk-in shower that is big enough to accommodate a seat or wheelchair?  Are there other potential hazards or quirks in the house that cause problems?

Here’s a little exercise to try:  Imagine that your friend’s 95 year old grandmother is coming to your house to visit.  She has recently had hip surgery and she uses a walker.  What obstacles will she encounter?

While you’re looking at your house through the lens of your much older self, there are probably things you can change and update that will make your house more age-friendly.  You may have been putting off remodeling a bathroom anyway.  Do it now, but make it accessible, with rails and a walk in shower.  If the washer and dryer are in the basement, can you move them to the main floor?  There are other changes that you might be able to make that make the home safer and more accessible.  But if the house requires too many changes, this may be the time to think about making a move to a place that would provide more accessibility and safety. 

2.     Is your home likely to require more work and more repairs than you are willing to make? 

Like people, all homes age and develop problems.  If you live in an older home, you know how constant the problems are.  Even after extensive remodeling our old house still springs an occasional leak or something breaks. We are on a first name basis with the plumber, electrician and a contractor who does the bigger jobs. 

Many older people defer maintenance on their homes, or put patches on problems that will only then recur.  They may feel that since they don’t expect to live too many more years, they won’t get their value from a new furnace or a remodeled kitchen or bathroom.  But if the heat goes out in the middle of a northern winter or the AC goes out during a Florida summer, that may be when family says “It’s enough,” and hauls you off to the nearest old age home.  If you have an older home that requires a lot of upkeep, and you don’t want to have to do it, then you might consider moving now or in the near future to a newer, lower maintenance residence, or to a retirement community that takes care of at least a portion of the maintenance.

Even if your home is currently in good shape now, you will inevitably need to make upgrades and repairs in the future.  Are you willing to do the ongoing upkeep, especially if it means hiring someone to do work that you can't do or are no longer able to do, or investing significant amounts of money?  That will be what is needed to keep your home comfortable and safe.

We’ve seen over the years that one of the real keys to staying at home is finding a handyman (or woman) for the small jobs.  Older people who have someone to do the little things like replacing the light bulbs in a high ceiling or cleaning out the gutters have a sense of ease about their home.  Unfortunately, a good handyman can be hard to find.

3.     Will you have access to services if you can no longer drive? 

How far is your current home from essential services--the grocery store, your doctor’s and dentist’s office and other vital services?  We would like to think that we will be able to drive forever, but that is usually not going to happen.  Are there alternatives to driving where you live?  In some ways, being in a city with good public transportation seems to be ideal, although there may come a time when you can no longer safely get on or off of a bus or train.  Many communities have transportation for Seniors, although most often it is not nearly as convenient as driving oneself. 

Looking through Our Future Lens

We plan to continue to live independently, that is, we do not plan to go to a retirement community or skilled nursing facility.  What we know from our work in those settings is that the same services and even nursing care can be provided at home, and that the cost is actually similar.  In order to carry out this plan, we will make one more move, this time to a somewhat smaller home that is all on one floor with handicapped capabilities, and that is somewhat near one of our adult children.  When one of us needs care, the other will supervise the services provided in the home.  Later, the children will take over the supervision for the remaining parent. 

It may seem cold or harsh to consider all of the possibilities, but by facing them squarely now, making provisions for an optimal living situation, and making our wishes clearly known to our children, it increases the likelihood that we can carry out our plan to live independently.  Without this advance planning, decisions will have to be made during a crisis, when the choices are often fewer, and when emotions are running high. 

A Final Note

One last note about public transportation.  We have spent a lot of time in Sweden over the past 25 years because of Steve’s work there.  One thing we have noticed is there are always a lot of older people out and about.  One reason is the busses.  When a bus comes to a stop, it does a little curtsy, lowering gently to curb level so there is no big step to climb up to board.  A person with a walker or a wheel chair can also easily roll on.  It’s kind of cool and it does seem to help older persons to get around.  Of course, an extensive bus system helps, too.

Friday, September 18, 2015

The International Carers Conference: Why Don’t People Get It?

Couldn't resist sharing this photo of a tram in Gothenburg

I promised a posting about the International Carers Conference, which was held in Gothenburg, Sweden from September 3rd to the 6th.  Carers is the term adopted for “caregivers” in Britain and most of Europe.

There was a high level of enthusiasm and excitement among the people who attended the conference.  Presentations included research on carers, but the main emphasis was on innovative programs and public policy initiatives to support carers.  It was particularly striking for me to hear about the impact that carers’ organizations have had in Europe.  Legislation has been passed in Sweden and Britain that recognizes the rights of carers and mandates services.  Other countries are moving in similar directions.  As I mentioned in my previous blog, Queen Silvia of Sweden gave the opening talk at the conference.  She has been a long-time advocate for carers in Sweden, having herself cared for her mother, and she gave an articulate speech that talked about the value of caregiving to society and the need to support carers.

At the same time delegates and speakers bemoaned the cuts in services to carers that began with the 2008 economic crisis and continues through today.  The cutbacks have occurred even in those countries like Sweden and Britain that have passed laws to support carers.  At least carers’ groups have their foot in the door, and hopefully funding will be restored in the future.

The US situation is somewhat different.  We don’t have much of the way of national programs of caregiver services to start with, but there have been cutbacks anyway.  In what has become all too common an occurrence here, those cutbacks have affected programs for the most needy—people with low incomes who qualify for both Medicare and Medicaid.  These cutbacks have been made at the state level, which pays a portion of Medicaid.  The cutbacks in part reflect the economy, but are also fueled by politicians who believe government funds should not be used to help anyone.  Or at least anyone who doesn’t have good connections.  Governor Walker of Wisconsin is spending millions of state dollars on a new sports arena for the Milwaukee Bucks while cutting back funding for public services and education. 

The case for a robust, national program that supports caregivers is obvious.  The National Alliance for Caregiving and the American Association of Retired Persons (AARP), which have emerged as the main advocates for caregivers in the US, have conducted a series of ongoing studies that describe how much family care is going on and the social, economic and health consequences of that care.  In their 2015 survey, they report that 18% of adults in the US provided care to a family member in the past year for “a medical, behavioral, or other condition or disability.”  That translates into 43.5 million caregivers.  These caregivers are helping children, spouses, parents and other family members.  We also know from extensive research that providing care is often stressful and takes a toll on caregivers’ health and emotional well-being.  The economic value of their unpaid care has been estimated in a 2013 report by AARP at 470 billion dollars.  Yet government largely stands aside and does not offer the support that will prevent caregivers from burning out and turning to more expensive, institutional care. 

We and many others have long advocated providing services like adult day care or other forms of respite to caregivers to help them continue giving care at home longer, and to reduce the risk that their own health will suffer from the stress involved.  There are notable programs across the country that assist caregivers, like San Francisco-based Family Caregiver Alliance.  But unlike Sweden or Britain or many other countries, we don’t have a national commitment or national strategy.  As a result, most caregivers in the US receive little or no help.  Queen Silvia talked eloquently about the economic costs of caregiving, but our politicians have their heads in the sand when it comes to the growing numbers of people who need help and who give help.

One way to approach the problems faced by caregivers as well as the people receiving care would be a national long-term care insurance program.  Congress runs the other way when that idea comes up, but there is an interesting model that could possibly gain support in this country.  The model comes from a surprising place – Japan.  The program, which was implemented in 2000, includes coverage of community services designed to support caregivers and help them continue care at home.  The unique feature is funding—the tax that supports the program goes into effect at age 40—a time in which workers are likely to have a secure income and when they are likely to be aware that they may need help for parents and for themselves in the future.  Research by Dr. Yumiko Arai has suggested that long-term care services under this program have been helpful to caregivers in lowering their burden.

Over the years Judy and I have met many remarkable caregivers.  Providing the resources they need to continue their work would recognize the contributions they make to our society as a whole.

You can access the report of the most recent National Alliance for Caregivers/ AARP Survey, Caregiving in the U.S. 2015,  at:

Friday, September 4, 2015

Finding Our Way

Ferris Wheel at Liseberg Park, Gothenburg, Sweden

Judy and I are attending the 6th International Carers Conference in Gothenberg, Sweden.  I will write about the issues discussed at the conference in a later posting, but I want to mention two issues that are off the usual topic of the blog.  We have always found that when we are in another country, we end up having a different perspective on our own country.  We notice the good and the bad.  Of course, there are many good things about the US, the freedoms and opportunities we have.  But we’re living in a time when there seems to be an emphasis in the media on the most extreme viewpoints, particularly as they relate to immigration.

One of the speakers during the opening ceremony for the conference was Åsa Regnér who is Minister for Children, Older People and Gender in the Swedish government.  That’s quite a portfolio of issues, but that is not what was notable.  Rather, she began her talk by saying how much she had been affected by the plight of the refugees in Europe and in particular the video this week of the little boy who drowned.  She then spoke proudly about how Sweden has been welcoming refugees, over 3,000 in the past week, including 700 unaccompanied minors.  She asked the Swedes in the audience to consider opening their homes as foster parents to these children.

When was the last time that we heard such a humane statement about refugees from a politician?  There is a far-right party in Sweden that opposes immigration, yet Minister Regnér was not afraid to speak from the heart.  It was quite a contrast to the presidential candidates in our country who are engaged in a race to the bottom on immigrant issues.  I wonder if any of them could recite the poem on the Statue of Liberty, or even give the gist of it.  It is, of course,

“Give me your tired, your poor,
Your huddled masses, yearning to breath free,
The wretched refuse of your teeming shore,
Send these, the homeless, tempest tost to me,
I lift my lamp beside the golden door.”

The other notable event this morning that highlighted differences between the US and Sweden was that Queen Silvia of Sweden gave the formal opening speech for the conference.  The Queen has been an advocate for caregivers for a long time, sparked by her own personal experience of caring for her mother who had dementia.  This morning she gave an articulate talk about the importance of helping caregivers.  But what was notable was the security, or lack of, in the auditorium, compared to the US.  Yes, there were security personal in the room, but they were discrete and on the sides of the room.  The audience did not have to go through metal detectors before entering the auditorium, and the Queen walked into the room as part of an entourage of conference officials, and not in the middle of her security detail.  Sweden is a much more civilized place than the US in large part because of its gun laws, and no one’s personal liberty is compromised because Swedes don't have easy access to firearms.

It does seem sometimes that we have lost our way, or at least that the media in the US dwells on the most sensational and extreme views.  We need to find our way back to a more civil society.  Countries like Sweden show us that things can be different.

Tuesday, September 1, 2015

Steve: Celebrating Retirement

On August 29, 2015, my department, Human Development and Family Studies, organized a retirement reception for me.  Attending were current faculty, staff, students, as well as many of my former doctoral and postdoctoral students.   It was a wonderful and happy day.  Here are the comments I made.

Ted Williams was the best hitter in the modern baseball era other than Babe Ruth.
He retired after the 1960 season.   That year he had a .316 batting average and hit 29 home runs.  Those were not his best numbers.  After all, he batted an amazing .406 in 1941.  But his 1960 numbers still placed him among elite players.

Williams could have continued to play longer, but he chose to go out when he was still very much on his game.

I’m a gerontologist, and I’ve thought a lot about retirement over the years.  It’s important to know when it is time to retire, whether in sports, academia or other walks of life.

It’s also important for those of us who hold relatively scarce positions in our
society—such as tenured professors—to make places for young people.

One of the things I am proudest of is the new faculty we have hired in my department in recent years.  They are smarter and better trained than we ever were, and will lead the department in new and important directions.

I have heard a lot of people say that they won’t retire.  They say they wouldn’t know what to do with themselves.  That’s not right.  We need to pass the baton.

Besides, I’ll know what to do.  Judy retired a few years ago and has been a great role model to show me that there are lots of things to do.  While I won’t ever cook or bake as well as she does, someone has to be the food taster.

I’ve been at Penn State for 29 years.   These have been the best, most productive years of my career, because of the great colleagues here in HDFS, the terrific staff, and the wonderful students I have had over the years.  Thank you all for coming and for your good wishes.