Monday, May 30, 2016

There’s No Place Like Home

Some street art in Stock

How many of you want to live in a nursing home?  Let’s see a show of hands.

We don’t see any hands up.  Not surprising, is it?  Most people would prefer to remain at home, even when it gets difficult to do the everyday things and to take care of themselves

We begin a series of blogs that discuss how you can stay at home and what alternatives there may be to a traditional nursing home.  For those of you who are concerned about your parents or grandparents, we may be able to help you start a conversation with them about the future.

Let’s begin.  If you really do want to stay at home, it is necessary to take steps to prepare for when you need help.  And you want to do it now, even while you continue to hope that you will be healthy and independent forever.

Defining the Plan

 We have identified five issues that need to be part of a plan for staying at home:

·      Getting the important people in your life on board with your plan
·      Making your home accessible or deciding to move
·      Being willing to use services when you need them
·      Deciding among possible housing choices if you decide to move
·      Understanding why staying at home is the right choice, if you can manage it.

We will take you through the first two points in this blog, and then return to the remaining points in subsequent blogs.

Getting the Important People in Your Life on Board with Your Plan.

Staying at home depends on having an advocate in a health crisis, who can intervene in the almost automatic process of transferring older patients from hospital to nursing home.  So the first step is determine who can act as a decision-maker for you in a crisis and involve that person or persons in your plan. For some of you, that will be your spouse or partner and/or children.  But it doesn’t have to be family, if you don’t think you can rely on them for one reason for another or do not have family to turn to.  Friends can step into this role.  We have known people who create a network of friends as well as professionals such as care managers to look out for their future needs.  Whoever you select as an advocate, that person won’t necessarily do the care that you will need to stay at home, but will help arrange care and make sure it is actually delivered to you.

The next step is to ask the person you have identified if they are willing to work with you on developing and implementing your plan to stay safely at home.
If you do not discuss what you want with your family or with the persons who will be your advocate, you may find out too late that they do not agree with your plan to stay at home.  Then when there is a crisis, they will take the path of least resistance, which is a nursing home or assisted living facility.  Everyone will be telling them that it’s the right thing to move you to a nursing home—your family, the doctor, the nurse, the social worker.  They will all say it’s not feasible, practical or safe for you to go home, or it will place too much burden on caregivers.  Your advocate has to understand that there is a realistic alternative to nursing home care and that there is a plan that can be put in place.

Make Your Home Accessible or Move?

The next part of the plan is to evaluate if your home is a place you could continue to live if you had a health crisis or became disabled.   This is something you need to do now, not when there is a crisis.  Steve had a graduate student whose grandparents lived in an old farmhouse in the country.  Every morning her grandfather chopped wood for the wood-burning furnace that heated the house.  The grandparents resisted all the efforts of their children to put in modern heating and in other ways make the home more accessible.  When the crisis came—the grandmother had a stroke—they were moved to assisted living in town.

Take a good critical look at your house.  No matter how much you love it, could someone with disabilities live there?  Can you get into the house without going up steps?  Is it possible to live entirely on one floor?  Is there an accessible bathroom, with room for a wheelchair to navigate in and an easy to access shower with a seat in it?  Are you near transportation and medical and home care services, in case you need them?  Do you live near enough to the person who has been designated to help you carry out your plan?

Sometimes issues involving limited accessibility can be fixed.  A remodel can create a first floor bedroom and accessible bathroom.  Other quirks your home may have also may be fixable.  Hopefully, you don’t have a wood-burning furnace.  But if the house cannot be made accessible or the location is wrong for getting help, it may be time to move. 

Whether you decide to move or to stay and remodel, it’s important to start planning now. If you move now, you’ll have more choices in where to go, what type of place to get.  And if you move to a new city or town, you will be able to make new friends and identify activities that you enjoy in your new community.  And you’ll have a home that could accommodate you when you need help.

Many of you are shaking your heads, and saying to yourselves, “Yes, but I’m not ready.  I love my home.”  Here’s the risk.  People delay and delay with this decision, until it is too late.  It may be that for a variety of reasons it’s more comfortable to stay where you are now and you’d rather not think about what could happen in the future.  We all stubbornly insist to ourselves that we will always be able to take care of ourselves, and don’t have to think about these things.  This may be the time to survey the important people in your life about their opinion of your current living situation.  If the consensus is that you can safely live there until the end with sufficient help, great.  But if the majority of the people in your support system see and point out the obstacles to being able to implement your plan, then it may be time to consider alternatives. 

We’re not pretending that moving is ever an easy choice.  Especially if you have been in your home for a long time and have a lifetime of memories there.  And, perhaps, a lifetime’s worth of possessions, as well.  Sometimes it helps if you allow yourself to think about which of your children or grandchildren would value the items that you cherish most, and begin making those transfers.  When Judy’s mother and father were getting ready for the move to State College, from a home they had lived in for 35 years, Judy’s mother started by asking each of her children and grandchildren what they wanted.  One granddaughter wanted her dining room set, another her set of china.  Mom found it gratifying to find out that they wanted these things, and by giving them away before she made the move, she had less to take.  Next she decided to bring only a few valued pieces of furniture to the new place, because it was much smaller, and she wanted to start with a fresh decorating palette.  She brought the chairs and a sectional they she and Dad used most, and the bedroom set from the guest room that was familiar to all of the children and grandchildren.  And she brought the artwork they had collected and surrounded themselves with.  This gave them a familiar environment in the new home, but with some new pieces to fit the space.  And it means that when the end comes, there is a manageable amount of her possessions to deal with.

Judy and I love our house, which is big enough for all of our children and grandchildren to have plenty of space when they visit.  It is even accessible for the most part.  But we also know that in the future the grandchildren will be less interested in visiting, and that it will then really be too big and require more upkeep than we may be able to do in the future.  So we have begun formulating a plan:  sometime in the next five or six years, we will move to a smaller, easier to maintain one-story house (but with a bigger kitchen—you have to have priorities) and nearer to children.  And, being perfectly honest here, we will have to get rid of massive amounts of belongings that we have accumulated.  Maybe we’ll do what Judy’s mother did and offer the kids first choice, then discard the rest.

In our next blogs we will continue our exploration of the other important steps to staying at home.

Saturday, May 28, 2016

Steve: Odds and Ends

Vasa Museum 2016

Since I got back from Sweden a few days ago, I have been reflecting on the class and the experiences we had.  The class has always been an eye-opening experience for American students and this was the case again.  We held a wrap up session in Stockholm, and the students showed how much they understood about the goals, accomplishments and shortcomings of the Swedish welfare state.   I think that actually visiting programs that serve older people makes the lectures about the Swedish system more real and shows the students that an excellence in care of older adults and children, as well as support to families, can be achieved.

Having been going to Sweden since 1989, I have seen many changes in the laws and in the care system.  Many of the people we met talked about recent changes—an emphasis on supporting older people in their own homes and making care more person-centered.  Yet these goals were apparent from the beginning.  But they are difficult to achieve, and so the new initiatives have been developed to get closer to these high goals.  This is the flexibility in the Swedish system—the possibility to try new things out.

Joy Torgé, who is one of the new faculty at the Institute for Gerontology, raised interesting points about how our views of older people affect our expectations for them and reinforce the worst stereotypes about aging.  She noted that contemporary views of successful aging, such as the Rowe and Kahn model, say, in effect, that you are only successful in you don’t get sick or become disabled.  Joy contrasted this view with perspectives from the community of disabled adults, who place much more emphasis on finding ways that make life good despite disability.  This is an important correction to all the unrealistic puffery in the media and the scientific community that if we only exercise enough or eat just the right things—which of course won’t taste very good—then we will live independently and healthy all the rest of our lives.  It’s not true!  We need a model that accepts that at some point people will have health problems and disabilities, and that it is possible to create conditions for a good life, despite those changes.  Sure, exercise and a healthy diet are helpful, but bad things will still happen. It’s what Bo Malmberg, calls “sooner or later.” 

One of the things that always struck Judy and me about Sweden was the number of older people who use “walkers,” or what the Swedes call “rollators.”  It finally struck me why.  They are free!  Of course more people use them.  Here people are reluctant to invest the money is buying one, because they don’t think they will really use it.  But once people try it, they see that it gives them help with balance and improves their ability to get around.  And it probably prevents falls.  Medicare wants to prevent falls.  Here’s a way.

From a personal perspective, I felt a bit sad that this would be the last Sweden class I taught.  The class will be in good hands—Beth Fauth, Sydney Schaefer and Lesley Ross plan to continue it, possibly along with Frank Infurna.  I bit my tongue and did not say, “I could come along next time.”  It’s better to end on this high note.  I feel like a ballplayer ending his career with a World Series win. 

New Video on the Meaning of Age

I want to call your attention to a new video called “Young Body,” made by Penn State student Cara Burke as her senior project.  It explores the meaning of age and aging from the perspective of people of different ages.  You can see it at:

The Vasa Museum

The photo is from the Vasa Museum in Stockholm, my favorite site in Stockholm and the first place we take students.  The Vasa is a 17th century warship that sank in Stockholm harbor on its maiden voyage (bad engineering), and was raised in 1961 and restored.  The story of its raising and restoration is impressive and the ship is incredible.

Friday, May 20, 2016

Steve: An idyllic setting and perfect day

 View from the top of the church tower in Visingsö 2016

Yesterday was our traditional visit to the resort town of Gränna and then to Visingsö island. Gränna is a pretty town nestled on the shore of Lake Vättern. We get there early in order to give the students a chance to see the local delicacy, Polkagris, being made. Polkagris are fat candy canes still made by hand in several small shops. They now come in multiple flavors and the traditional peppermint. The candy cane may have originated here, or at least that's what local people say, but even if it's not true, they have perfected it. 

We then traveled by ferry to Visingsö island, a long, narrow island in the middle of the lake   There are 742 permanent residents. It's a tourist area in the summer, but quite rustic, no hotels, just cottages. Or people do day trips. There are also very few cars. 

 Cottages on Visingsö island

We rented bikes and went off to our 3 destinations. One was Annero, the old age home on the island.  The island's population is old, and people want to stay here, even when they can no longer live alone. Annero Is a small, 18 person facility, with 17 people currently living there. Residents have a wide range of needs, from mostly independent to severe dementia. They have known each other most or all of their lives. The staff, some of whom are also long-time residents of the island, say that knowing one another helps residents accept the people who have greater disabilities. Even when the facility is full, people on the island who need to move from home will wait for an opening, rather than go off the island. 

Like the other facilities, each resident has his or her own apartment, either in the main building, or in lovely cottages in a park-like setting behind the main building. The staff is small, 3 persons during the day and two overnight (though one sleeps unless there is a problem). There is also a nurse during the day who takes care of residents' needs as well as seeing island residents. A doctor comes from the mainland once a week.  In case of a medical emergency, the person is taken by ferry or by a private boat to Grana, and from there by ambulance to Jönköping. 

The facility also serves as the base for home help on the island who visit people at home. Meals also get delivered to some island residents and some come in to Annero for lunch. 

It would be easy to say that this facility is too small and does not have medical care on hand, and so should be closed. But this is where people on the island want to live out their lives. And the municipality makes that possible. 

The literal high point of the day is our visit to a 1,000 year old stone church on the island. To pass the course, students must climb the church tower. It's a narrow, steep ascent, but everyone made it up and was rewarded with beautiful views of the island and lake. Everyone made it down, too, I think. 

Then the actual highlight, dinner at a restaurant on the island. The restaurant opened just for us, thanks to the class organizer, Sussie Jojannesson. We had salmon baked in a casserole lined with mashed potatoes, followed by a flourless chocolate cake with ice cream and the most delicious strawberries. 

Stockholm next

We go to Stockholm on Friday. We will hold a discussion of all we have seen and done, as well as visit the sites in that beautiful city. I'll do a wrap-up post of what we learned and how it can inform what we do in the US. 

Thursday, May 19, 2016

Steve: There's no place like home

Community Rose Garden 2016

Nearly every older person wants to remain at home, surrounded by the comforts and reminders that have been accumulated over the years. Sweden has long explored how to make that possible.

On Wednesday, we met a 99 year old woman who lived in a beautiful one bedroom apartment filled with furniture and classic Swedish crystal. It was a homey and welcoming place, filled with light from the large windows.  And it was connected to a nursing home.

The apartment is part of a new-old trend in Sweden, apartments for older people where services are available if and when they are needed. These types of apartments used to be called service houses, but now are being called security apartments.

The woman we met described her situation this way in excellent English.  "I'm like Queen Silvia (of Sweden).  I have people around me to help."  Using her "rollater" as walkers are called here, she can get meals in the restaurant-style dining room or take them in her apartment. And it is her apartment. She leases it and it is filled with the furniture and decorations that give meaning to her life.

How much does this cost?  About $1200/month for the lease, meals and services. And as she pointed out, if she could no longer pay, the municipality would pay the cost. That's the Swedish social safety net.

This woman's apartment was in an older building in this complex. We visited two apartments in a new building that was specifically designed for "security apartments."  We met two residents, who had recently moved in.  The first was a man living in a nice sized one-bedroom ground floor apartment. He asked with a twinkle in his eye which of the girls in the class would dance with him. The apartment was filled with family photos. Although his English was limited, he was able to tell students who was in the photos:  his children, grandchildren and his wife who had recently passed away. This is so much more than the typical equivalent, assisted living, in the US.

The last apartment was on the third floor, with lovely furniture and a magnificent view toward Lake Vättern. It had the feel of a luxurious apartment that you might find in New York. For $1200 a month, including meals and services, and less if you needed less. The woman, who had been in the apartment for one week, pointed out the window to the house she had lived in for many years in the adjacent neighborhood and she talked about walking in the large public rose garden, which is next door to the complex. The apartment gives continuity to her life.  She wasn't wrenched from her home and placed in a tiny room with impersonal furnishings and a roommate not of her choosing.  Instead, she lives in a lovely apartment with one of the best views in town. And she'll get help when she needs it. Just like Queen Silvia.

Thursday's Journey

On Thursday, we take a trip that has become a tradition of this class. We go to Visingsö island, a large island in the middle of Lake Vättern. We bike to the old age home on the island and then students climb to the top of the tower of a 1,000 year old church. They have to make the climb to pass the course. We end the day with a salmon and potatoes casserole at a restaurant on the island.