In his excellent Aging in Place Guide blog, which I have been following for some time because of my strong interest in universal and accessible design and aging in place, Louis Tenenbaum brought up the issue of the “sideways” pressure those of us in this position often feel coming from siblings who may be either more or less involved in the care of the parents. We’re all familiar with the concept of the upwards and downwards pressure of the three generations, but these sideways pressures don’t get much press, if any.
There’s still another aspect to this sideways pressure that Louis didn’t mention. Something that’s never talked about is what happens when the siblings themselves become in need of care, and become as much a part of the issues that we have to deal with as the aging parents, when neither of them are available to help with the care of the other. We expect to eventually have to take care of our parents, to have to worry about where they’ll live as they age, to possibly have to move them into assisted living or new, more accessible homes as they get older and sicker, but how often do we think about those potential needs for our siblings – or even ourselves?
I’ve been shoved headlong into this whole issue within the past two months in a way I never expected to have to face (or at least far younger than I ever dreamed we’d face it) – and of course, none of us do anticipate this sort of thing.
My father is undergoing radiation for cancer in Kansas, and his status is deteriorating, so we are absolutely going to have to do something about his present living arrangements. I’ve always done all the legwork to help him when he’s been sick over the past few years, and frankly resented that my brother didn’t do more – some of the sideways pressure Louis was talking about, only in reverse, but something that people face all the time. One sibling is usually the one doing most of the work while the other is less involved for any of a number of possible reasons, and this often results in tremendous family tensions, anger, guilt, and so on.
On Christmas day of 2008, however, I was suddenly thrust into the position of both having to take care of Dad – and my 50 year old brother, who has become critically ill in Pennsylvania as a result of ongoing complications of some surgery he had last year. He nearly died, and the extent and nature of his present illness and injuries mean that he’s not only facing a very long and difficult recovery, and is completely incapacitated now – but that he will very possibly not be able to return to his own home because it is completely and totally inaccessible.
And I’m here in California, suddenly trying to deal with both of them – with virtually no support from either – and certainly no assistance with the logistics.
Both of them are understandably deeply worried about the other, but neither of them are able to do a darned thing about it – and I’m pulled in three separate directions every day because of course I still have my own life and issues to deal with, as well as those of my partner.
The very fact of a still-young brother being as sick as he is highlights all the more the need for universal design at all stages of life, but particularly as we move into our middle years and on, because absolutely anything could happen – and very likely will at some point. Really, it’s critical to consider at all ages, because you simply never know when disaster may strike, but we do expect more debilitating illnesses and injuries as people age – and we have more people age 40 and up today than we’ve ever had at any time in the history of the world.
I’ve known the odds of something happening for decades, between my former career as a paramedic, and a stint selling life and disability insurance. S*** is going to happen in the majority of people’s lives at some point, end of story, or they are going to be touched by it one way or another. Not one of us is going to escape at least being touched by illness and disability at least in a family member or friend, if not our own selves.
When you come face to face with it actually happening in your own life in a catastrophic way like this, though, that brings it all home in a very different way than seeing the effects on patients or clients, or reading about it in actuarial charts or textbooks or blog posts. It moves from the conceptual into reality in a way that will make your head spin.
There is a chance that my brother will not be able to return home to his present house because of the nature and extent of his injuries, and the potential outcome he may be facing. I’m praying this won’t be the case, and with luck it won’t, but I’m bracing for it because it’s certainly not impossible. We would be able to do some modifications, but others simply won’t be possible without major reworking of the building and additions and/or extensive engineering as well as landscaping because of the size and layout of the house, so it will probably be a waste of time and money to do the little bit in this particular situation. In all likelihood, the best, easiest, and most economical course of action if things go in the direction they very well may in the course of his illness will be for him to move to a new home that would be more accessible to start with.
Can you even begin to imagine how traumatic it would be to be seriously ill, in the hospital and rehab for months, fighting for you life and even limbs – and then not even be able to return home to your own home? To have to go through the trauma of finding a new home, packing and moving, etc., especially when you are at your least physical and emotional ability to cope with the already substantial pressures of buying, selling, and moving that even fully healthy and mobile people go through? To know that you’re going to have to leave it to others to do all the legwork, packing, etc., because you won’t even be able to get to most of your own stuff? To realize that you may simply never be able to access the places you love in a home you are attached to ever again? That you literally can’t ever go home again?
Can you even imagine the pressure that you would face, even as just a family member who has a loved one go through this? Not just the emotional worry about your loved one’s health, but all the myriad of changes and decisions you’ll have to make to help them – learning how to navigate the health care system, as well as find resources to help once they come home, and likely have to figure out how to find a designer, architect, and contractor to help with housing modifications, as well as possibly a realtor, movers, etc.
I at least have the advantage of having both a strong medical background, as well as a strong design background with a particular interest in universal and accessible design, which I’ve been studying for years, and an ocean liner’s worth of resources to draw upon – but let me tell you, I still have a lot to deal with, because it’s a whole different ballgame with the personal involvement.
If you don’t already have this kind of broad background, trust me, you’ll be on a roller coaster ride to a crash course in a whole lot of things you never even thought about before, and never wanted to know about – at a pace you never imagined. And it will be all the harder because you’ll also be dealing with your own emotions and possibly even depression over your concern for your loved ones, exhaustion from their care and advocacy for them, travel, etc., and all the more so if you’ve got your own physical issues to contend with as well, which many of us do. You will absolutely have to have the help of social services people and designers and architects to even begin to be able to navigate the whole thing and filter through all of the endless details and things to consider and attend to in order to get your loved one healthy as possible again, and eventually settled back into a healthy and functional home of their own. No matter how much you know, you cannot navigate a complex situation like this by yourself.
You expect this to face these issues with parents, but not with otherwise strong and healthy younger siblings or other relatives – yet the reality is that the odds of being hit with some disabling condition at some point in life that lasts three months or longer before reaching the age of 65 are as high as 44% – and the chance that these same people will remain disabled for five years or more after the onset of the disability reach almost 60%. Here’s a great chart that shows the disability probabilities by age.
And if it’s not one of your siblings facing disability, in addition to your parents and/or children, it’s going to be you – and the others will be the ones having to deal with all of these issues for you instead. This is really inevitable in life, so we may as well all just plan for it. There’s just no point sticking our heads in the sand and hoping we’ll never have to face these kinds of issues.
A “disability” that may affect your use of your home and ability to care for your own self may be as “simple” as breaking your leg – how many of us go through things like that? Have you ever tried to take a shower with your leg in a cast in your present home? To get food prepared and onto a table while using crutches? To get up and down the stairs, do laundry, grocery shopping, put away the groceries, or clean? It’s hard enough for the couple of months you have to deal with it with a simple fracture – but what if you knew that was how things were going to remain for always? What do you do then?
Disability isn’t necessarily something catastrophic like a major stroke or paraplegia or even blindness, which is about all most people think of when they think of the term “disability”. Even the day-to-day injuries incurred by normally healthy and active people can result in their homes becoming serious barriers to their use, enjoyment, and even safety, even if they are expected to eventually recover from the problem.
And even if we ourselves are healthy and our homes provide no obstacles to us at present, how many of us have friends or relatives who would find barriers in our own homes, and thus be unable to even visit us? Or how many of us would have to move if we suddenly had to take in a disabled or elderly relative?
This is why I make the best efforts I can to incorporate as many universal design principals as possible into every project I design. We absolutely must all take these potential eventualities into consideration when buying a new home, renting a new apartment, and in designing any spaces we occupy. We must demand that builders build for these eventualities, especially since we are at a point in history where more people than ever are reaching the age where disability is more likely than ever.
Believe me, it is far easier to plan in advance, and be sure that your living space is usable for people across all age and ability ranges (or can at least be easily adapted) before a need arises than to have to worry about how to deal with it once a crisis is in your face.
And if you never do need these features? Terrific! They will still enhance your enjoyment of your home in myriad other ways, and can be easily designed by a competent designer so that they won’t even be remotely noticeable as anything unusual. Universal design is just plain good design – period. It makes navigating around the house easier for everyone, even the fully “temporarily able-bodied”. I hope we get to a point where we don’t even need the term any more, because the principles will just become so ingrained in design professionals as just the way things ought to be done, and in the public as just what they ought to have every right to expect everywhere in the built environment.