“ASSISTED LIVING OR SWEPT UNDER THE RUG?”
GEORGE PETRIE – LONGBOAT KEY, FLORIDA
The family asked me to help them move their parents into an Independent Living Facility. As was often the case, the children lived out-of-state and needed someone in their parents’ home town who could help with the transition.
I know only too well how difficult it can be to convince a senior citizen to give up their car, their home, and their independence. Suddenly they are being forced to surrender their future to a stranger. Suddenly they have someone else making their decisions for them. The level of anxiety, anger and denial are similar to what a person experiences in the most critical challenges of life.
My clients weren't "poor" and, although they were both on Medicare they could afford to live in a "more upscale" facility. Unfortunately, as I have learned over and over again, it really is nice to live in a "luxury" facility but the fact that you are paying more does not necessarily mean a higher level of care.
The food was better than some of the other places I had seen and the dining room was decorated to look like a very fancy restaurant. When I first visited the facility to take them on a tour of their "new home", we were invited to have lunch and we were treated like very special guests. We were given a special table and a singular waitperson was assigned to the table. Obviously the facility knew who their best dining room employee was and this was the person who graciously served our meal.
My clients thought that they were going away to a bed and breakfast resort for "a few months". The children had told them that it was just a temporary arrangement while their home was being painted and re-decorated. It’s almost always easier for the family to "lie" in order to avoid any confrontation. Unfortunately it snares me into the world of subterfuge and, in the end, I know that at some point these people (who seem to enjoy my company now) will probably re-define their opinion of me and perceive me as a traitor. I know that when "moving day" comes they will be angry and feel betrayed.
My job as a Patient Advocate is to see that they are properly placed in the right level of care. I need to decide if they can go to an Independent Living Facility or if they needed Assisted Living. It really isn't much of a science and my decision relies solely on my observations of their day to day activities and their abilities to provide for their own needs. If there was a checklist it would incorporate proper nutrition, safe ambulation, risk of falls, medication compliance and their overall state of mind.
This particular couple was at the high level of self-sufficiency. Both of them were 90 years old but they still took care of their home, did their own cooking and appeared energetic and well able to exist in their home environment. Unfortunately the bills were not being paid. Mail would pile up on a table by the front door and on several occasions their utilities had been shut off. A neighbor would take them to the grocery store so they always had enough provisions. When speaking with them it was obvious that their short term memory and their attention to important details had decompensated to the point where they really needed someone to keep an eye on them. Also, the home was much more than they needed and it presented a lot of risks. They had accumulated a lot of "clutter" over the years. I am certain that each and every one of these items had some special meaning but these things had slowly taken over most of their living space over the years.
When they showed me around their home for the first time I kept wondering how anyone would be able to sort through all of this and decide what to take to their new apartment at the Independent Living Facility. How would anyone decide which of their “treasures” needed to go with them to make them feel as though they had retained some of this soon to be former life. I knew she adored her collection of Lladro statues and, for him, he was so proud of all of the tools he had collected over the years. His favorite (and he would show it to me every visit) was the battery operated drill set. The first time he showed it to me he exclaimed “You don’t even have to plug it in! It runs on a battery and it comes with a saw and a flashlight!”
What good would a drill set do at a retirement facility? They have their own maintenance people there and the apartment is small enough that we have to think in terms of “what will fit and where?” I was left with having to sort through their life history and decide what would make their future trip with them. I couldn’t ask them what they wanted to “take” because they didn’t even know they were leaving. Even if they agreed to move, they would never be able to decide what was important enough to them to take to the new place. Every single piece in their home held some meaning to them. Just like everyone else they had a lot of “things” that had been hidden away in drawers and never used or looked at but, once these things were brought out into the open they would suddenly have a measure of importance as part of their day to day existence.
“Oh, we must take that bottle opener”, I could imagine one of them saying. “That was given to us by my brother, God rest his soul. We have to have that”. These were the types of responses I was used to hearing every time I had to do this type of relocation. I knew that when it came time to choose items, I would be making the decision I would be much like a surgeon with a scalpel deciding what to cut off. Unfortunately, for this procedure there would be not anesthesia and the patient(s) would be awake for the duration.
Care facilities are accustomed to traumatic upheaval. Practically every day they open their doors to some unsuspecting person or couple who have no idea that they are about to lose control over their lives. Their meals will be served at a designated time every day. Their activities will be planned and will go on whether or not they decide to attend. They will suddenly be in unfamiliar territory which they will probably liken to a senior day care. They will resent the fact that “everyone here is so old” because they never realized until now that they were aged and needed assistance. How many times did I hear senior’s say “We don’t need any help, we can take care of ourselves right here in our own home!”
I also knew that, once the subterfuge was over and they were in their “new place” there would be a multitude of questions. “Why are we here?” “When are we going home?” Who did this to us?” “What did we do wrong?” The list of questions would go on and on and there would never be any definitive answer to give them. One could try to explain to them that it was safer for them in this environment but they would not understand. You could also try to make them understand that it was in their best interest but that would be like trying to argue politics or religion. Sometimes their level of dementia would be such that they would accept an explanation one moment and then ask the same question or questions over and over again.
There are so many levels of psychological trauma associated with this type of transfer. In some cases these people will have no family to come and visit. Others will be abandoned by their children who are busy getting along with their own lives. Sometimes these individuals will lose their connection with their old neighbors or church members. As time goes on everyone will either forget where they are or not have the ability or the desire to go for a visit.
Occasionally there will be a family or a family member who will make the trek to visit on a regular basis but these are few and far between. These elders are now much like someone stranded on a foreign island. No familiar faces, a new and frightening environment and stripped of what they thought were their “worldly possessions”.
They will find their way to the dining room for their meals. At first they will sit down by themselves at a table and suddenly be told by another resident that they “cannot sit there!” They have been told over and over again that there are no reserved tables and they can sit anywhere but some of the experienced “denizens” of the facility have staked out their seating and feel that they have become entitled to sitting in the same place each day. These “new” arrivals will be seen as interlopers who have not yet earned the right to decide where to sit.
So they will move from table to table until they find one that is acceptable to the rest of the group. Someone may eventually join their table for meals but usually it will be another new resident who is just as frightened and just as confused by this new oligarchy.
Some elders will choose to stay in their apartment and skip meals until they can board a bus for a shopping outing. Some of them will be too afraid to go on these trips because they have never had to get on a bus and they are extremely uncomfortable about being in a confined space with strangers who have not been very welcoming. Some of these people will lack appropriate nourishment and they will quickly de-compensate requiring another move to another level of care. By that time they are usually resigned to the fact that they have been reduced to rats in a maze and simply shuffle along with the program.
In this case my clients suddenly found themselves in their new apartment. I had arranged for a mover to come to their old house and take certain items of furniture. The decision was made to take whatever furniture would fit into the new abode and what other items that could be taken to make the place as comfortable as possible. Their clothing had to be sorted through so that they would have the essentials but, left and forgotten were the dresses and suits that were once brought out for special occasions. Now, all they would need were comfortable outfits that could easily be placed into a small closet or hidden in a dresser drawer. It was up to the family to decide what to do with all of the other things that had to be left behind.
My people suddenly found themselves in an alien world, against their wishes and angry with everyone and anyone who had any part of it. My departure would be a blessing for them as I was a constant reminder of their betrayal. I was also certain that they perceived me as a person who could not or would not help them solve this dilemma. They also saw me as a person who either did not have any answers or simply didn’t want to answer any of their queries.
Little did they know that, although my pain wasn’t as deep as theirs, I was tortured by their pain and anxiety. I knew that my role was important in their lives but, even though I knew it was “for the best”, I cried inside because I had to be a player and an observer of this life changing event. I knew from experience what traumas they would face and I knew that I was the one who was responsible for facilitating what they perceived as a dreadful event.
Once I left them there and ensured that their environment was comfortable I walked away from the facility knowing that I may not ever see them again. In the beginning I used to go back to visit my clients but oftentimes they were not eager for my visit and other times they made it very clear that I was not welcome in their new miserable world.
Some of them adapted. I would follow up with the facilities to see how things were going. Some of them had languished and had to go to a nursing facility. Some of them simply died of a broken heart. Fortunately there were some who actually adapted very well and had come to love this new way of living. Some of them made new friends, adopted new activities and flourished as time went on. There were even some people who would send me a holiday card with a note of thanks. Those were the times that made all of this worthwhile for me.
Healthcare is a multi-million dollar business. Retirement living is very profitable endeavor and has numerous “deep pockets” that can be picked. While I don’t ever wish to live long enough to become part of the long term care program I realize there is no other option for most people who reach the senior years. People are living longer. Medicine is keeping people alive well beyond their ability to have a good quality of life. Ours is a society that literally provides for people as long as their bank account or their insurance holds out. They are institutionalized and “cared” for as long as there are dollars available for taking. When the money runs out they become the taxpayer’s responsibility. When they die they need to be replaced. Care facilities have salespeople who are, much like anyone in sales, trying to make a quota. They are constantly looking for new candidates to “fill rooms” and enhance the census. I’m certain they have quotas just like any other sales entity.
How many times have I sat in the office of a salesperson at a facility listening to the same self-aggrandizing propaganda about how their facility is better than any of the others? The sales pitch is usually the same but with different pictures and different promises. Someone has to grab this cash cow and sometimes the promises paint a picture of a utopian retirement world that almost touches nirvana. I never really could tell the difference between this type of sales and auto sales. Someone has to do it and sometimes I feel complicit.
My part is to try to make the procedure as painless as possible. Usually it only amounts to putting a band aid on a festering wound but I still know that, without me, these people would literally be completely on their own, left to fend for themselves in an alien world.
Remember the drill set? I brought it to him. He put it on a shelf in their new apartment and he will sit watching television and hold it in his lap. I think it is just a tie to his old life and his "connection" with what used to be his reality,