A Time of Choices

Over the past couple of years Kathy and I have been looking into changing our life style from living in a condo in a 55+ community into a retirement community where Kathy does not need to cook as much and has more time for social activities.  We did not know when we started this process how different each place can be.  From Independent Living to Assisted Living to Active Retirement communities, each of these differ dramatically from one place to another.

This all started before Kathy was diagnosed with Parkinson’s disease.   About 10 months before her diagnosis she voluntarily stopped driving.  She had had several close calls and felt that in her own best interest she should stop driving.  This meant that I would be taking over all the driving assignments.  It meant that going out on the bike for a long ride would be curtailed, though by how much I did not know, going out and playing 18 holes of golf would not be an option as it once was, now it was 9 holes when I could get out.

Kathy was diagnosed in July 2015 with Parkinson’s disease and it shook both of us.  What does it mean to have Parkinson’s?   Is it a fatal disease?  How does it change your life?   How does it change your relationship?  How do you become a caregiver?  Questions and questions and more questions with very little information coming back.  The internet did not help, it only added to the confusion.  And we were confused to the max.

One of the first obstacles Kathy faced was mobility.  Her walking was more a shuffle than a walk and she had a tendency to fall, the doctor ordered physical therapy, after a couple of months the therapist ordered a walker make especially for people with Parkinson’s.  If this was not enough, her speech was getting softer and softer and the volume was decreasing.  More therapy only this time with a speech therapist.  The speech therapy helped, her voice is stronger and people do not need to strain to hear her.  But when she gets tired her voice starts to soften and slowly it becomes harder to hear her.

In our condo we must navigate a short set of stairs to get from the front door to the entry door of the building.  Since our unit is on the lower level with ground level access in the back, I attempted to get a walkway built around the building connecting to the walkway of the building next door.  The Home Owners Association (HOA) did not like that idea and at first completely denied it.  After doing some research and contacting a disability rights organization, the HOA gave their lukewarm approval along with a list of conditions that had to be meet before construction of the walkway could start.  The conditions added cost to the construction making the cost extreme expensive.

This is when I got the great idea to start looking into a different place to live.  First we looked for a condo that was on ground level.  All we found were old run down units that needed lots of rehab.  Next I looked at Retirement facilities called Continuous Care Retirement Communities (CCRC), these are organizations where you buy into their foundation and if after a number of years you have spent down your assets they take over your care for the rest of your life.  Kathy and I have known several people who have lived or are now living in a CCRC.  Of all the people we have known, none have ever indicated to me during our conversations that they were dissatisfied with their living arrangements.

In the Portland Metro area there are several CCRCs and for the buy in they range in price from about $225,000.00 to well above a million dollars.  So I started with a couple CCRCs that I knew the most about, which was not much and found that a little bit of knowledge is a dangerous thing when looking at any retirement community.  After talking with the sales representative over several months we submitted our preliminary financial paperwork and after a few weeks they said, “Sorry, you are too young”.   Meaning you have more life than money.

I was feeling a little discouraged and while talking to a very good friend he suggested that I contact the governing body of the fraternal organization I belong too and inquire about a program they have that helps seniors stay in their home or other facilities during their later years.  I applied and Kathy and I were accepted into the program.

Again I resubmitted the preliminary financial paperwork along with the other paperwork to the CCRC to determine if the two programs could work together.  After several months of poking and prodding the finance person at the CCRC, writing letters to the CEO, they finally called my organization and said that they could not work together.  He did not give much of an explanation except to say we were too young.

Well, we started over again and rushed into a situation that we should have taken longer to evaluate, and after rushing in we saw problems that with experience and knowledge we would have been able to identify earlier.  With this information in hand we looked at other places for a better picture of what we should expect.

We were offered a nice package to entice us into moving into the place we are presently living.  After only six weeks here in this facility we decided that we had made a major mistake.  We had put our condo up for sale just two weeks prior to this decision, and we decided to withdraw the condo from the market and we will be moving back.

What was the big mistake you ask, first it was not the apartment we chose.  It is a nice 2 bedroom, 2 bath unit with large bedrooms and spacious closets and a great view of the mountains to the East.  What we found over the course of 2 months is that this is a “nursing home”.  We may be in the Independent Living portion of the building but the Assisted Living population are among us with very little assisted care.  Most of them look (and many smell) as if they need a bath, and that they should have their clothes changed far more frequently.

The dining room starts off with a salad bar, sounds like a great idea except it is not kept clean.  Unless you are one of the early arrivals in the dining room you may or may not find a table that has been bussed after someone has finished their meal and left.  I have watched people push the dirty dishes to the center of the table and scrounge glasses, cups, and silverware so they can have their meal.

Since they do not pay their servers or wait staff a decent wage they are always short of staff.  The delivery of a meal from the time you order to delivery may be anywhere from 15 minutes to over an hour.  Many of the wait staff will disappear from the dining room not to be seen again for long periods of time.  If that weren’t enough a couple of the wait staff have attitudes that screams they don’t like being here or being around people who are in their senior years.

In two weeks’ time, Kathy and I will be moving back to our condo.  At least we know what to expect from access to and from our unit and how meals are prepared and served.  We have learned a big lesson with this move along with the tremendous amount of money we have spent to move in both directions.  The biggest thing we learned is to look long and hard before you leap.  Take the facility up on their offer to allow you to stay three or four nights for free to get the feel of the place.  Is it an active retirement community or a waiting room?  Look at the dining room and watch those who frequent the facility and how well the wait staff takes care of the residents they serve.  Look at all the other facilities, i.e. Laundry Room, hall ways, rec rooms and other gathering places.  See how well they are used and the condition of the equipment.  Many things can be learned by just wandering around and talking with people, both residents and staff at different levels.  If you know someone who lives in that facility or a friend or relative of someone who lives there talk with them, they are a great source of information. With all this don’t forget to contact state, local and non-profit organizations they can also give you much more information.

Don’t be intimidated by the size or grandeur of the facilities to take you mind off your main purpose, to learn as much about them as you can, so you can make an informed decision.



Elephant costume jewelry
Elephant costume jewelry

Have you ever had a loss?  Losses come in many shapes and sizes, also

Grandmother's wedding ring
Grandma’s wedding ring

emotional and unemotional.  Take for example the loss of a piece of costume jewelry, it is not something that has any great intrinsic value and probably little emotional value. But if it were your grandmothers wedding ring and it were lost or stolen then the value increases greatly both intrinsically and emotionally.  Everything has its own worth, large or small.


2008-08-24 12.20.07

Almost three years ago, Scamp my miniature Schnauzer, died after a


severe stroke, and last year we lost Chloe, another schnauzer, to cancer.  We had Scamp for almost 13 years and Chloe for only one.  We were devastated over the loss of both dogs even though we only had Chloe a year, she had become part of the family and burrowed herself deep into our hearts.

'57 Chevy
’57 Chevrolet

Cars are sometimes as big a loss just like the loss of a pet.  According to one insurance company ad on TV we are so close to our cars that we name them and if we have an accident and it is totaled, we are depressed beyond measure, then when the insurance company pays for a car that is newer you break out into your happy dance.  Really, you must kidding.  I have had cars I really liked but never to the point that it was a love affair.

Some people are that way about their houses or the possessions in them.  When we sold our house 11.5 years ago there were some nostalgic feels I had when we left, it is only normal, it is not like losing a pet or a loved one.  Within just a few months we were settled into our new home and had pretty much forgotten about the old house.  but if that loss is the result of a fire or a violent storm would that change how I woud feel? More than likely I would be devastated, the loss of everything that Kathy and I have worked for over these many years and the memories they represent.

But these losses are trivial compared to the loss of someone you love. The physical death of someone is devastating at the monent and the feeling of hurt will last a short time and turn into a mild ache coupled with the memories that will last a lifetime.  What about the loss of a loved one, not by death or divorce, but by an illness.  It is a toughter loss than can be imagined.

2012-07-21 12.32.05
Enjoying a trip to Crater Lake.

My wife, Kathy, has Parkinson’s disease, it is hard to feel the loss when she is right here.  Her walking has slowed, balance is an issue we can overcome with a walker.  Sometines cognitive issues have come up and has caused friction between us, it is not like losing someone to dementia or Alzheimer Disease.  We get irritated with each other, but that is because we are around each other a lot more now that we have entered in that part of life call retirement.  Because of the changes that my wife has gone througth I now do more things around the house, such as grocery shopping, doing laundry, making beds, doing the dishes after meals.  And then there are the doctor’s appointments and since she no longer drives I take her to all of her appointments.  Someone told me not long ago, they having recently lost their loved one, that it was like losing your loved one twice, once to the disease and again when the loved one passes on their rewards.

I had hoped that the two of us would be able to do some traveling and visit places that

New Year Celebration Anywhere
Illumination by fireworks

we had never seen or do again things that we had done in the past, but that is not going to happen.  If I want to see or do something, I have to plan it for the times that I take for respite care.  This does not mean that my wife and I can not go places and take some time to enjoy ourselves, it is just not very often. For example, this July we are going to the Oregon Gardens in Silverton to see the 4th of July celebration. Can you imagine seeing the Gardens lit by the exploding rockets?  It should be spectactular.

Ainsworth UCCLosses like these are what you make of them.  They can be devastating and overwhelming or with a lot of love and support it can be rewarding.  Support comes in many varities, your church (if you have one) can be a great resource, disease related support groups, your city/county may have programs to help with care while you are taking respite time, organizations that you belong to (Masons, Elks, Eagles) might also be able to help.  While on respite ensure that your loved one has plenty of stimulation, lonelyness can turn into depression which can lead into much tougher issues.  Some places, like here in Oregon, have organizations that support particualar diseases or illnesses, ours is Parkinson’s Resources of Oregon

Masonic Square and Compass
The Masons
Elks Lodge

And for goodness sake take care of yourself, be involved with activities that will help you relieve the pressures that build up.  If necessary get yourself a therapist, this a great way of blowing off steam without judgment.  Many therapist have tools to help you cope with loved ones suffering from diseases or illnesses that may or may not linger on for years.