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Posts Tagged ‘disability’

My friend Nicolette writes quite a bit about aging in place, disabilities, and interior design, and her posts usually get me thinking quite a lot, especially her one on strategies to deal with loss and aging.

It’s a topic that’s near and dear to my own heart as well, along with the related issues of universal and accessible design, all of which are really tied together and inseparable. There’s a lot of overlap among the concepts of aging-in-place and universal design in particular, but also with accessible design. These are issues that we all eventually face one way or another; it just happens to be the turn of my generation to learn how to age well.

Disability, of course, can and does strike at any age. In my own family, my brother has been dealing with an illness and injuries that will leave him disabled and mobility-impaired for life, and he’s only 50. At the same time, both my father and his partner are ill, as is my aunt. My now-former partner is facing serious medical problems in his own family as well, so we were both stressed out by these issues. I myself cope with several disabilities, and have found my mobility impaired by injuries, and even my ability to dress myself and take care of my own hair is greatly diminished at times. Age is taking its toll on us all in various ways – and these kinds of stressors impact all relationships.

Having the tragedy of my brother’s situation occur so suddenly, on top of trying to look after my father at a particularly difficult period in his own life, really brought these issues home for me in ways that even a decade as a paramedic, a stint selling life and disability insurance, and even my own travails never did, and is the reason why I finally completed the coursework I needed to obtain my credentials as a Certified Aging in Place Specialist (CAPS designation) a couple of years ago. I will discuss what CAPS is more extensively in another post.

There are many, many things that can be done in a home or office to assist people in dealing with the physical challenges of disabilities and aging. Hundreds of websites and resources exist; there’s no shortage of information out there. I’ll be writing more about these topics as time goes by, but for the moment, let’s just take this as a given.

In reality, the physical changes required for designing a home that supports aging in place or dealing with a wide range of disabilities well are the easy part. The technology exists, and with enough ingenuity (and sometimes cash, admittedly), anything is possible.

Even if a major remodel is not possible, there are usually at least small modifications that can help improve the functionality of the physical space immensely, especially for people who do not require major changes for wheelchair access. Not long ago, for example, I consulted with a lovely, vibrant woman in her 70s who is feeling the losses associated with arthritis on how she can modify her draperies so that they are easier to draw, and don’t hurt her shoulders. She’s on an extremely tight budget, so a lot of the products I normally work with are out of the question, but even in a brief discussion, I identified at least four different ways she could modify things with cheap, readily available materials just from the hardware store that would still preserve the open, airy, minimalist kind of look she prefers, and we are looking now at more specific products. She’s got cafe curtains hung with a rod pocket, which take some pushing even for able-bodied people to move, so just changing to a style with rings or grommets will allow them to glide effortlessly on the rod. She won’t have to reach up any more, either.

This small change alone will allow her to deal with something she has to handle daily with much less wear and tear on her shoulders, and bring a measure of ease to her life that she never even thought she could have, especially without spending a fortune. When you are in pain, and your joints are deteriorating like this, even eliminating one or two aggravating movements a day can make a very big difference in your comfort level – and your ability to enjoy your home. An accumulation of several or many such minor modifications can really add up over time.

Willingness and ability to think outside the box to adapt common materials to the task at hand are critical skills for designers, especially those of us who work with people with physical limitations or tight budgets. A good interior designer is invaluable to this process – and to making changes that integrate well, still look beautiful, employ the same kind of quality materials of any other good design – and which don’t scream “disability” or “old people”.

People often don’t even know there’s anything that can be done to help some of the difficulties they have, so a sensitive, perceptive, and creative designer who knows how to ask the right questions and to observe well can open a lot of doors, and create solutions for problems that a client never even knew were possible and thus may have never even thought to ask about or request.

I was very gratified to see the face of the lady I consulted with just open up with amazement and hope upon hearing the range of possibilities I was able to come up with; that’s the kind of response that drives me to do what I do. And I didn’t even realize just how automatic it is for me to think this way until she herself commented on how natural it is to me. She’s been incredibly frustrated because she hasn’t been able to find a new kind of wand that would be more functional – but that isn’t where the best solution actually lies.

But what most stops people, especially from doing anything about modifying their environments before they absolutely have to, and which causes them the most difficulty, is undoubtedly the emotional component – the need to acknowledge the fact of these changes, whether existing or pending. And often, we put off making the changes we know we may need while it’s still easy, and end up in a crisis that forces decision-making at the worst possible times.

We don’t like to face the thought of our own mortality, even when the evidence continues to mount. It’s a natural human reaction. We don’t want to let go of who we once were, the things we could do before, the hopes and dreams for the future. We don’t want to acknowledge that there is indeed a sunset period to life, and that we must all face it someday. We don’t like the idea of letting go of cherished possessions, or moving to a place that doesn’t hold the same memories of our present homes. We are afraid of what life will look like as we lose abilities, and as our friends also decline – and inevitably die. We hang onto our stuff for dear life, as if it’s the only anchor that will remind us of who we are and where we have been, as if we can keep time from advancing if we just don’t change a thing in our environments. We hold onto our old ways of doing things, and outdated, nonfunctional homes, often because of fear that somehow admitting to what’s inevitable will somehow make it come to pass more quickly and take something away from us now.

Some people are lucky enough that they will be able to stay in their own homes for the rest of their lives, and without modifications. For many of the rest of us, though, changes are inevitable, even if only because of declining incomes, or desire to just not have so much house to take care of any more. But the first – and most ongoing – hurdle we have to face is the one in our own heads.

Also, as we Baby Boomers age, the stresses our sheer numbers will put on the health care and elder care systems will overwhelm both, and more and more long term care will have to occur in our own homes. We must plan in advance for these changes, if we are able to. Most people want to remain at home as long as it’s humanly possible anyways, but we are going to face the situation where there is likely not going to be any other choice for many of us who might actually prefer or need to utilize services such as assisted living at some point, just because of overload on the system.

Fortunately, there is a lot of help out there even for mental adjustments we may need to make. Good therapists and support groups can be invaluable, and there is no shortage of reading material. A good interior designer will also be exquisitely sensitive to needs, and can open doors that you haven’t even thought about. There are many strategies for combing through your possessions in an orderly way and deciding what to keep and what needs to find a new home, so that we can “right-size” our lives.

Identifying the things you own that have the most meaning to you and taking them with you if you move even if you have to jettison the rest can go a long, long ways towards helping ease the pain of change, for example. Do you really need that entire collection of decorative boxes you’ve amassed over the years? Or are there a few choice pieces that hold the most meaning for you, and which would help remind you of all of the rest? Can you photograph them and save them that way instead of taking them with you physically? Do you ever even look at all of those old photo albums that are piled up in the den, or would just keeping a few photos, framing them beautifully and using them in your new home still give you as much joy?

Start editing your possessions by asking yourself what single item you would take with you if you were told you had to evacuate your home immediately, and were only allowed to take one thing (ignoring whether it’s actually portable or not). Then repeat this exercise with the thought that you could only take one more item, and so on.

Looking at the move or remodel as an exciting opportunity to start afresh can help immensely as well. Even if the reason for remodeling your bathroom and kitchen is because you are now in a wheelchair, or expect you will be in a couple of years, if you can look at this as a positive thing that will help you continue to live as normally as possible, and increase convenience for you and everyone else living in or entering your home, you will be far, far ahead of the game. There’s no reason a fully accessible home has to look like a hospital, and it can easily be a showcase, just as any other home.

Consider, for example, that you get to have a brand new bathroom – focus on the wonderful new things you will have, and how simple things like taking a shower will now be much easier than they have been – or possible in the first place. Order beautiful cabinetry, tile, lighting, and fixtures. There are even beautiful grab bars made now that will coordinate perfectly with the rest of your bathroom fittings. The additional space you will need will make the room more functional for everyone. Make the space a sanctuary, not something institutional in character, and it will become a destination for the whole family – a source of joy, peace, and comfort, instead of a reminder of loss or impending loss.

Because loss and change are inevitable parts of life. They affect us in so many ways. The outlook we bring to the process, and to any home or office changes we must make, can make all the difference in the world – and that much, at least, need not cost a cent.

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If you would like an evaluation of your existing space to see if it is suitable for aging in place or accommodating a known or expected disability, or for assistance in designing a new home that will fully support your living your life to the fullest regardless of your own current or future physical needs (or those of your family members), and you want to ensure a beautiful as well as highly functional result, please contact me.

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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.

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