Courtesy of Lauren Bangerter
I have some dear friends who are struggling with planning for the future, and as I was talking with them, I realized that their decision was not terribly different from our own decisions. As we've written previously, what most of us want is to remain independent and autonomous as long as possible. We prefer not to think about the reality that we may actually decline before the end, but that is the usual course of events. My friends are already dealing with significant health issues, and they do not have children or relatives whom they would trust to make decisions for them, should they be unable to do so, which complicates things. This has drawn them towards a CCRC or Continuing Care Retirement Community, the type of campus that has independent living, assisted living and skilled nursing, so that whatever the future holds, they won't have to move again. It was more comfortable to think about it as something that would happen "one day," off in the far distant future. But they put their name on a list, and within the next year their place will become available, which is what has precipitated some real soul-searching.
My friends created a home for themselves that they have outfitted exactly to suit their taste. They like to cook, so have built a chef's kitchen with top-of-the-line appliances. They have comfortable living spaces to accommodate their interests and avocations. But the house has several stories, and is not really adaptable should one of them become physically disabled. Even if the house could be modified, they cannot imagine how they would get the kind of care they might need in the future. It would involve finding a trusted professional care manager (like the one I mentioned we have for my mother), and being able to find helpers as their needs increased. More importantly, they would have to find someone they really trust to make decisions should one or both of them become unable to make decisions for themselves. This is really the heart of the matter. In the worst case scenario, one of the couple dies and the remaining spouse becomes cognitively impaired. Who will look out for that person, both physically and financially? Who will be sure that their advanced directives are carried out? Who will be sure that they are not exploited by the very people they are trusting to help them?
Unfortunately, we have seen too many instances of vulnerable older people who have been exploited by the very people they have trusted to help them. It can be a family member, a paid helper, even someone who was supposed to be helping them with their finances. It has been our experience that it is far too easy to find an attorney to re-write a will even when the individual is in the later stages of dementia. We have also seen cases of elder abuse and neglect, especially when someone does not have a family actively supervising care.
At the other extreme, when a couple with financial resources commits to a CCRC, they may contractually cede some of their rights. For example, when they enter the community they are usually capable of living independently, and may select a lovely apartment. But as time goes by, one of the couple becomes more ill and requires more care. While that couple might prefer to hire more help so that they may stay in the apartment, the facility may have limits on how much care they can have before they are required to move to assisted living or skilled nursing. In truth, there's no reason that they should have to move provided that sufficient help can be brought in. And, usually when the first spouse becomes ill, that is what happens. However, once there is only one remaining spouse, it becomes more difficult to resist the urging of the facility to move to a different level of care. Unfortunately, it is to the financial benefit of the institution to move people to higher levels of care, because those are the more expensive beds. When a skilled nursing bed becomes available, they immediately look at those in assisted living who require the most care, and begin putting pressure on the resident and their family to move them. Often the staff rationalize it to themselves, saying that the person will be safer and better taken care of. But to individuals in that situation, it is a terrible quandary. They want to believe that the institution has their best interest at heart, in which case they begin to think of themselves as much more vulnerable and frail. And they realize that in most important ways they are dependent on the institutional caregivers, so they don't want to antagonize them. The end result of these moves to higher and higher levels of care may be excess disability and a decreased quality of life. Many of the patients Judy saw in her nursing home consultation were these very patients. There are a wide range of CCRCs, and some actually work very hard to maintain their residents' independence, but it is important to consider this when looking at such a community.
The hard truth is that it is impossible to predict what the course of the later years of your life will be.
It is important to do as much planning as possible to ensure that the things that are most important to you will be likely to occur. We feel fortunate that we have children who we trust to help us when the times comes, just as we are serving that function with my mother. But many other people are not as fortunate.
So here is what I am encouraging my friends to do. I want them to look at a variety of CCRCs to be sure that they are in one that will give them the most flexibility. CCRCs usually require a substantial financial commitment, and they have varying restrictions should it turn out not to be a successful living situation. I am encouraging them to consult with an attorney about the contract with the CCRC to see if they can add language that would address the issues that are most important to them, such as being able to stay in their apartment and bring in whatever help is necessary. While they have consulted an attorney to act in their behalf should both of them become incapacitated, I want them to find someone, (and since we have eliminated family members) it may be a trusted friend or a professional Geriatric Care Manager, who will have the ability to oversee the attorney should this provision come in to play.
These are big, important decisions, and the money that they have saved all their lives is at stake, so taking a little extra time and consulting more people, is definitely worth it.
Curiously, when Steve and I were discussing our friend's dilemma, it reaffirmed what we have said before. We are very thankful to have our good health and the good relationships we have with our children. And we agreed that we are not interested in being in a CCRC. Our plan is to live independently, bringing in whatever care is necessary for the first spouse whose health fails, and then to rely on our children in taking the next steps. When it happens and who goes first will determine what those next steps are, but we have clearly laid out our wishes in advance directives and discussed them with our children. And we do realize how very fortunate we are.