Dementia Heaven

I read an article about a Dutch retirement community that sounded like dementia heaven.  I cried a little bit.  My grandmother suffered from dementia.  And when say I suffered, I mean suffered.  It’s a terrible disease, the spreading confusion and fear.  I am sad about it all of the time.  I wish that things had been different.  I wish she didn’t have to go to a nursing home.  I wish that there had been some alternative.  In The Netherlands, there is.

In the small town of Weesp, outside of Amsterdam, there is an entire village for people suffering from severe dementia and Alzheimer’s Disease.  Instead of a typical retirement/nursing home, with hospital beds and alarms that go off if you leave the building, Hogewey is a retirement community made of 23 different homes and several assorted buildings along wide boulevards.  Each resident, not patient, has their own room in a house with five or six other residents of similar background.  Each house is unique, decorated to the style the residents are used to living in.  It feels like home.  It is familiar and comfortable.  The residents are free to be confused and keep on living a life similar to the one they’ve always known.

There is a hair salon the residents can go to.  They can help shell peas for dinner.  They can go to work and come home again.  There are games to play and short streets to walk down.  It’s just like a real life, but safer.  Dementia does not necessarily mean that their bodies are broken too.  Confusion is not a physical ailment.  Yet, the body atrophies without use.  Being in a nursing home can break you.

I think that the last years of my grandmother’s life would have been much better if she could have walked to the coffee shop like she always did.  If only she could have gone out for coffee and a donut and all her friends.  She used to do that every day.  It got to be too dangerous.  She didn’t know what she was doing.  There were cars and people who didn’t know how to treat dementia patients.  Confused people can end up in dangerous situations. But they are still people.

Some people still want to get up and go to church or the coffee shop.  Some people just want to have somewhere to go.  Hogewey gives dementia patients a safe place to be slightly confused yet go on living.  Not just watching TV in the single, stifling green, gathering room.  If there is a safe place to walk, a person who thinks that it is 1950 can still take a walk.  Why not?  Trained professionals know how to pretend.  They know how to gently guide a resident home when needed.  I know that I would like to live in a place like that; a safe place to be confused.

I am worried about the long term state of my mind.  My memory is already full of holes.  I lose time monthly? Weekly?  Daily?  I don’t know.  Seizures steal time and memories from me.  Not all seizures can be seen.  I can’t remember lost time.  Will Dementia eventually be a large, deep, black hole that I will fall into?  What about my parents or my husband?  My grandmother’s demise shows a genetic predisposition to dementia.  My uncle always talks about how confused he is.  I don’t want any of us to end up with an ankle monitor.

I don’t want to live in a nursing home.  I don’t want any of my relatives to have to live in a nursing home. I don’t want anyone to go through what my grandmother did.  I regret that I couldn’t have done more for her.  We had no other choice.  We have to change the system, give the people more options for dementia care.  We need group retirement communities.  They don’t have to be hospitals.

The baby boomers are the largest chunk of the population and they are about to become very confused.  Dementia/Alzheimer’s currently affects 1 in 8 Elderly Americans.  That percentage is only going to grow as the Boomers age.  If it is done right, the cost of running a retirement community like this can be equivalent to the money we are spending in traditional hospital-like nursing homes.  Who wants to be in a nursing home?  We need to plan for that eventuality.  The Boomers are going to become confused.  You and I maybe become confused.  Dementia patients can go on living physically healthy lives for years!  Decades!

Recently in my hometown of Erie, Pennsylvania, a married coupled escaped their nursing home, twice, to return to their former home.  They called a cab and told the cabbie their address.  They did not want to go back to the nursing home.  The Police were called, twice.  Can you blame them?  Don’t you want to live at home or at least a close facsimile?  What if they had a familiar home-like setting?  What if they could still walk down the tree lined sidewalk, hand in hand?  The wife could get her hair done and the husband could play outdoor chess.  What does it matter if they think their long-dead parents are still alive?  It doesn’t hurt me.

When the iron curtain of dementia began to fall on my husband’s grandmother, she falsely believed that she got remarried.  Shortly after her husband died she met a new man conceived out of nothing.  He had a full name and backstory, Mr. Reed Kramer.   They met and fell in love.  They got married.  “It was a beautiful wedding,” she said.  They had a child.  It made her happy for a while.  She was confused.  But she wasn’t ill and she was truly happy.

Eventually she was moved into the nursing home, after several accidents and dangerous mishaps.  She didn’t understand why Reed never came to bring her home.  She cried and cried.  What if she could have lived in a safe house that felt like home?  What if she could still believe that Reed was just on his way home forever?  He would be always coming for her, not leaving her behind in a hospital.  I wish with my whole heart that there had been a place like Hogewey for her and my grandmother.

Let us be the flagship of the country and build a retirement community for people to live in, not to die in!