Jan’s Story

Jan's StoryThe following is a guest post from Barry Petersen, Emmy Award-winning CBS News correspondent and author of “Jan’s Story: Love Lost to the Long Goodbye of Alzheimer’s”

When does a marriage die even if the love never does?

We are not talking about the kind of rifts that can lead to divorce. We are talking about when someone fades and disappears so far away mentally, that there is no longer a relationship.

A hypothetical question? Not in my life, and very soon…not in the lives of millions of unprepared Americans. As Baby Boomers age, more and more couples will face this…one with a mind diminished and slowly being erased, the other healthy and vibrant. There will be many travelers on this journey.

The reason is Alzheimer’s Disease. I first heard those words in 2005 when my wife, Jan, was diagnosed with Early Onset Alzheimer’s. She was 55. At first, I cared for her by myself. I am a CBS News Correspondent and at that point we were based in both Tokyo and Beijing, traveling between the two cities. Then, as Jan worsened and because of my need to travel for my job, I hired a live-in caregiver, a retired nurse from Tacoma, WA.

Finally, in May, 2008, I made the decision that ended our shared life as we knew it; I placed Jan into an assisted living facility in the United States. I kept living in Asia, continuing to work, and each time I went back to the US and visited her, I could mark the changes as she spiraled downward.

I learned to accept that she no longer knew me when I came to visit. The Barry she remembered is someone deep in her past, not the man in front of her today. There were tears about this, but always in private, never in front of her. She would not have understood, and that would have frightened her.

Yet it ripped at my soul. This woman I had wooed and won, who had shared adventures living in Asia and London and Moscow, who had once been a successful foreign correspondent in her own right, had gone away.

People who know us would use one word to describe us: “BarryandJan,” because we so loved being together. Now, she was adrift somewhere else, and the Alzheimer’s meant she could not tell me where she was, or why, or what it was like there.

And there was guilt. Who cannot weep when the one you love disappears, who cannot feel the rage I felt, asking myself: “Why her. Why not me?” Jan was the better person of us as a couple, the bright star in whose glow I happily lived. She was the good of us. Who had the right to take that away.

And in time there came the hardest question of them all: Is it still a marriage if only one person is mentally present?

In that answer lies the future…to spend the rest of my life alone, even though Jan had gone away? Or – decide that I needed to go on with life.

To move on was to tempt the rage of those who told me I was violating my wedding vows. Their morality was clear – the vows say ‘till death do us part,’ and that is what people have forever promised.

Jan's Story 2Except now, people live longer, and that means Alzheimer’s comes more often because the major risk factor is simply … growing old. One in eight people over 65 have Alzheimer’s. Almost one in two will have it by age 85, according to Alzheimer’s Association. And 85 isn’t that old anymore.

There were others who told me it was time to accept that my relationship, and with it my marriage, had changed and that I was alone. I was surprised at some who said it. A couple I know who have been married, happily, for decades – people I thought would be strongly pro-marriage at all costs and would tell me never to break those vows – were among the first and most adamant to say: find someone to be with, create a new life, do not surrender to loneliness, do not fold up, dry out, and die.

Dying was an option. I thought about it, faced with the sense that I had lost the one reason for getting up and going to work and enduring Shakespeare’s “slings and arrows of outrageous fortune.” My fortune was dark and doomed, or so it seemed.

It was time to make a call. I could not keep going on as I was, finding solitary friendship in ever more late night alcohol.

I reached out, not well at first, after a friend signed me up for an internet dating site. I set one rule – that I was honest about still caring for Jan, yet willing to explain that the marriage, the relationship, were victims of Alzheimer’s. The marriage, as I defined it, was gone. Finished. But if someone could understand and accept that, they also had to understand that Jan was still with us, still alive, and I was still her husband and the man who was watching over her. Jan and my care for here was a part of the package.

There were women who instantly rejected me for this, and I understood. There were others who wanted to move quickly into a relationship, and that I also understood…and rejected. Frankly, they scared me off.

In time, and with time, there was one. Mary Nell is a widow, wise in the ways of grief, who understood the being alone part far better than I, and accepted that this would be an unusual pairing because we would not be two, but three. Our relationship would include Jan.

And so it does. Mary Nell and I go together to visit. Jan can’t remember her name, but remembers that Mary Nell is a friend and throws her hands open for a big hug and hello. Even though we are together, Jan sees no connection between Mary Nell and me. And Mary Nell sees Jan as a friend, someone she now cares and worries about. It is more often Mary Nell who says…we need to bring flowers, we need to get her new shoes, or she’s out of her favorite lipstick.

The moment we leave, Jan forgets that we were ever there. She forgets the flowers we bring, or the songs we sang together as I played the piano for her.

Mary Nell and I call ourselves the “New American Family,” and perhaps we are a Marriage of Three. We surely are the precursor of the tsunami of dementia and Alzheimer’s and difficult decisions to come. We will soon be joined by millions of “New American Families.”

I do not consider that comfort. I do not want anyone else to travel this dreaded path, but it is happening. Each diagnosis, and there is one every 70 seconds in this country, will bring others to this precipice.

I have no answers for others, offering only what I have done and learned and chosen, knowing that it was right…for me.

I wish them luck. Like me, they will need it.

About the Author: Barry Petersen is an Emmy Award-winning CBS News Correspondent who has reported on everything from wars and natural disasters to Paris fashions, Welsh choirs and the return of American Jazz to Shanghai, China. His stories have been datelined from virtually every continent in a career that spans more than three decades. Petersen wrote his first book, Jan’s Story: Love Lost to the Long Goodbye of Alzheimer’s published in June, 2010, about the struggle he shared with his wife, Jan Chorlton, who was diagnosed with Early Onset Alzheimer’s Disease at age 55 and is now in an assisted living facility. Jan was also a CBS News journalist, reporting from both Japan and the former Soviet Union for CBS Radio, CBS Sunday Morning and the CBS Weekend News. Petersen is currently based in Denver, CO, where he reports for the CBS Evening News with Katie Couric and CBS Sunday Morning with Charles Osgood. Visit www.barrypetersen.com.

The Holidays Are Coming – Visitability – Part 2

Part 2 in a series on Visitability.

The most important thing you can do to make your home visit-able is to ensure that you have at least one zero-step entry into your home. That is access to your home that doesn’t require anyone navigating a change of level or steps. In case you do not have this currenyly you can even rent-a-ramp for the holidays to allow this access into and out of the house if needed.

Make your hallways wider and more accessibility friendly by moving any obstructions such as  furniture from them to facilitate ease of movement for anyone in a wheelchair, walker or mechanical  mobility devices, like a scooter chair. Also remember to remove all area rugs and floor mats since  those are notorious culprits in slip and falls and act as irritating obstacles to any wheelchairs  attempting to achieve firm and safe traction with flooring.

Most elderly family members might also like to congregate in the kitchen and even offer to help or want to help in the preparation of the festivity meals. To make them feel at home and at ease in offering, try to provide some counter space that is lower for them to work at. This can be achieved
by placing a lower table, even a folding card table, at the end of a central island so that they can pull their wheelchair or seat up to it, have enough knee clearance and lend a helping hand.

Another great quick fix is to use a pull-out bread board and have them work off that. Remember sometimes a sit down work surface is in fact appealing to anyone who might be performing repetitive actions like cutting or rolling — be they able-bodied or dealing with a mobility challenge.

Now that the meal is prepared, family and friends will gather around the dining table to share those special moments of communing and partaking in the fabulous feast. Ah but have we pre-planned where our guests who use wheelchairs are going to sit? Given the fact that most dining tables,
especially those with an apron, do not usually have enough knee clearance, we should probably arrange to have the table raised to provide a minimum of 27 inches of clear knee space below. This can be tricky since whatever we do to raise the table must ensure that the table is stable and secured in place.

After the meal is done, we may find some will retire to the closest living room or lounge and for that area of the room to be accommodating you might want to remove any coffee or side tables that make maneuverable pathways narrow or difficult to get around. I can’t tell you how many times I have
knocked my shin against a heavy coffee table as I plumped down on a deep sofa after stuffing myself on turkey. Oh yeah and speaking of that, make sure that all your seating options are not overly soft and unsupported since some of your guests might be elderly and need the support of a firm seat and
arms on a chair to safely sit down and stand up as they eventually make their way to the closest bathroom.

This brings us to the next area of the home that needs some pre-planning and attention. Make sure that at the very least the toilet seat is user-friendly by installing a plastic riser seat which you can get from any local DIY, drug or hardware store. While at the store you can also get yourself some
temporary grab bars that can be connected to the toilet or seat and provide the needed short term support. At your sink area, make sure that you have towels close to the front, perhaps on a floor-standing towel ring, and also tilt the mirror forward a little if you can to insure it is not to high for
use by those who might be in a wheelchair or elderly who have limited movement in their neck, back and shoulders.

Some of your mobility-challenged guests might also be staying overnight and will need some prepared area to bath and sleep. In the case of the bathing, assuming you don’t have a no-curb shower already in your home, simply add a removable transfer bench, preferably with some grab bar supports to a tub or shower and replace or add a hand held shower head to help control the flow
and direction of the water while bathing. These are available at your local hardware store.

At last, everyone is turning in for the night after a day of freedom of mobility and fun festivities. Your special guests have their sleeping accommodations all ready for them with their beds raised on  similar blocking as the dining table to facilitate transferring from their wheelchairs. The beds are also pushed apart to allow maximum maneuverability and visit-ability as the day draws to a close and everyone settles in for the night.

Oh yes and better put the holiday cookies on the lower counter space in the kitchen just in case Santa decides to leave his sleigh at home this year and make his deliveries from the back of a Rascal Turnabout Electric mobility chair! After all he is aging gracefully too, you know.

About the Author: Raad Ghantous is the principal of Raad Ghantous & Associates and is an expert in luxury hospitality, wellness centers, and medical & day spa developments.  He is also the owner of Your Home For A Lifetime, an A.D.A/ Barrier-free/ Universal design/Aging in place, full service design/build firm with over 15 years of experience  specializing in developing integrating elegant and seamless designs/modifications to new or existing structures.

The Holidays are Coming – Visit-ability (Part One)

“Holidays are coming, holidays are coming, holidays are coming … watch out, look around, something’s coming, coming to town, coming to your town, holidays are coming, something magical, can you see it shining bright? Tis the season …”

These are the lyrics from Coca Cola’s famous “Holidays are Coming” advertising that has been around for decades and usually runs to announce the soon to arrive holiday season.

Here we are again at the beginning of another such season, with Halloween, Thanksgiving and Christmas on the doorstep. A time for family and friends to visit and share the warmth of the season together – that is assuming our homes are “visit-able.”

Visit-ability, a trend that has been gaining more and more support starting in the mid-80s is a movement/philosophy that seeks to insure that all homes are at least partially accessible to people with mobility impairments, even though those in fact might not be the owners of the homes but rather occasional visitors.

The importance of this simple philosophy can be seen even more when one realizes that America’s 50-plus population is likely to exceed 100 million by 2010. Ten thousand people will reach the age of 50 every single day and this 50-plus consumer base will account for more than one-quarter of all new home sales in the future. One can argue that making a home visit-able may even have a direct positive impact on its resale ability.

In fact, back in 2006 the National Association of Home Builders stated that “Our visiting parents aren’t getting any younger (and neither are we). Visit-ability in entry doors, barrier-free showers and non-stoop dishwashers show buyers you care” were in their list of emerging trends. Visit-ability modifications also make homes easier for people who might develop mobility limitations to still visit friends and family, rather than have to turn down invitations or not be invited at all. Therefore, visit-ability can even act as a first step towards a fully universally-designed home.

These features provide basic universal access and allow currently able-bodied people to remain in their homes if they do in fact develop a disability, and as such to start to age-in-place, rather than to be forced to do expensive renovations, relocate to a different house, live in an inaccessible home which endangers their health and safety, or move from the community they love and feel safe and oriented in into a care facility prematurely.

Many of us baby boomers are also taking care of parents, and parents are visiting their children’s homes or living with us even now, so maybe we should look at the upcoming holiday season as a magical opportunity to prepare our homes to match the warmth of our hospitality through their visit-ability.

So how do we go about making these necessary changes to be able to entertain our families regardless of their individual impairments you ask? Well, some of these modifications can be temporary and barely cost you any money at all.

We’ll cover some of these specifics in Part Two.

About the Author: Raad Ghantous is the principal of Raad Ghantous & Associates and is an expert in luxury hospitality, wellness centers, and medical & day spa developments.  He is also the owner of Your Home For A Lifetime, an A.D.A/ Barrier-free/ Universal design/Aging in place, full service design/build firm with over 15 years of experience  specializing in developing integrating elegant and seamless designs/modifications to new or existing structures.

Introducing Contributing Writer Karen Love

Undoubtedly, healthcare and elder care will be in the public eye for years to come.  The intersection between the ballooning cost of healthcare and an aging Baby Boomer population will force legislation and public policy decisions that will impact generations.

It is with great pleasure that I introduce our next contributing writer, focusing on public policy, legislation and regulatory compliance impacting elders. [Read more...]

Introducing Our First Guest Writer…Terri Glimcher

The more time you spend speaking to families, caregivers and staff members at different communities, the more you realize how much a single individual can contribute to your loved one’s happiness.

When I cross paths with these unique people, it only makes sense to bring them to Inside Assisted Living and let them share their secrets.

I’d like to introduce our first guest writer.

Drum roll, please…

Welcome, Terri Glimcher!

Terri is the Activity Director for Summerville at Oak Park Assisted Living, an Emeritus Senior Living property in Clermont, Florida.  For those of you not familiar with Emeritus Senior Living, they are the second largest assisted living provider with over 28,000 residents.

[Read more...]