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.