Editor’s Note: Matan A. Koch is a speaker, educator, and consultant, sharing ideas and strategies to promote the universal inclusion of people with disabilities in all aspects of society. His lifelong history of disability advocacy began with a term as the president of Yale University’s student disabilities community, and reached its most recent highpoint with his appointment by Pres. Obama to the National Council on Disability, for a term which concluded in 2014.
During this span of almost two decades, Matan has been privileged to support serve and advise a myriad of organizations on inclusion, from national Jewish bodies to individual synagogues, to local nonprofits and bar associations. To learn more about Matan’s work or to bring one of his presentations to your organization, visit www.matankoch.com.
I was born with Cerebral Palsy, and as such, I was never able to walk, and have always needed a significant amount of help with my activities of daily living. I have never known a day when I did not need someone to help me get dressed, and someone to help me use the toilet. I have degrees from Yale, and Harvard, was a successful lawyer, and a presidential appointee, and yet, leave me on my own for more than about 20 hours, and I may well find myself miserable, uncomfortable, and as much at the mercy of my own body processes as an infant left for the same amount of time.
As such, I often joke, when babies learn to walk, or begin to perform the other self-care, that they have surpassed me. It is at once amusing, because obviously my life accomplishment far exceeds that of an infant or toddler, and yet, coldly true, because they have acquired a freedom of action without assistance that it is unlikely that I ever will.
The undeniable flip side of that joke is that anyone who lives long enough is likely to join me. As people age, they are likely to go from being able to move themselves wherever they want to be to being dependent on help, whether human or technological. They may well, with faculties fully intact, find that a combination of muscular weakness and aging internal systems means that they need assistance, or they too might find themselves in a compromising, incontinent situation.
This loss of ability, once taken for granted, is not only a tangible reminder of the often frightening progression of time which only goes one way, but is also amazingly jarring in its unpleasantness. I have lived with this reality all my life, and still there are moments in every week where I rail when something falls on the floor and I can no longer pick it up, or when I have to spend an uncomfortable couple of hours fighting my bowel because there’s no one to help me use the restroom. How much more disconcerting when these limitations are new, when you know that they only likely to get more difficult, and worse, you have no idea the path that they will follow.
So the question becomes what to do. A disclaimer: my work is in disability and I am not a geriatrician, my recommendations come from those that I would give to a person acquiring a disability at any stage of life, and to the extent that I purport to speak from the perspective of aging, it must be said that I speak from empathy, not special knowledge.
That said, my disability experience does give me some insight, as age-related disabilities are still disabilities. First, and counterintuitively, I recommend acknowledging that it sucks. Nothing has ever bothered me more than those times when my disability has presented me with an unpleasantness, and somebody will spend a lot of time trying to convince me that it’s not unpleasant. It is unpleasant, at that moment, when you need to put on a shirt and you realize that you can’t. I imagine it must be particularly unpleasant when you must allow someone, possibly for the first time in more than 60 years, to clean your backside for you. Even worse that they probably don’t do it just the way that you clean yourself. It’s worth acknowledging it.
It’s not worth dwelling on it, however. The first thing to do once you’ve acknowledged it is to see what you can do to make it such that the loss of ability is not a loss of agency. Because age-related disability comes on slowly, usually, there’s a natural desire to hold on to doing things exactly as you’ve always done them, making minor modifications until an eventual catastrophic failure brings your vulnerability to the fore. I strongly recommend avoiding that. Get a walker as soon as your steps become uncertain, and a wheelchair as soon as the walker becomes a struggle. If an aging person continues to move in the ways that are difficult, letting them become slowly more difficult, they tend to progressively narrow the scope of their life to those things that they have the energy to accomplish, highlighting the isolating nature of their diminished strength. If they make the transition early, however, the diminishment of quality-of-life never happens. I can’t tell you how many times I hear the story of an older person who finally gets a wheelchair after fighting it for years, and is amazed at the reopening of the world for the next five years or 10, once their wheelchair or scooter replaces struggling to walk around. If we did this earlier, the world never needs to narrow in the first place, greatly improving emotional health.
If you procure a shower chair the moment it starts to become difficult to stand in the shower, you never have to face the debilitating feeling of feeling like you’re not really clean, as the quality of your shower diminishes, or worse, suffer a major fall before deciding to use a device. The pain from a fall is much more debilitating than the shower chair.
The defining theme should be what adaptations or technology can give this person the most agency in continuing to control as much of their lives as possible, not what incremental changes can help them to struggle along in a pale imitation of the way that they once did. The key here is to focus on this agency, and be upfront with the person who is aging about how it is realistically much more pleasant to learn to do something differently than lose the ability to do it at all.
Even with this approach, however, the shrinking of independence will happen to anyone who lives long enough. At a certain point, other than ensuring quality care at all times, directed as much as possible by the individual in the way that they would like, there’s not so much that a caregiver or family member can do to affect that reality.
What can always be affected, however, is the spiritual reality. Early on in my introduction, I spoke of how I jokingly used to say that infants had surpassed me, but that I understood that this was minimizing my many accomplishments.
I will tell you, however, that even for me, there are times when being at the mercy of my physical realities has a strong impact on my immediate ability to see self-worth. How much more so for someone for whom it is new and scary.
Some of the solution to this is in the power of family and friends. Just because dad can’t walk around anymore doesn’t mean that he can’t advise you on the complex business transaction that is going on at work, if that’s something that he used to do before. Just because mom needs help in the bathroom, doesn’t mean that she can’t help the grandkids with homework, or be a sounding board as you figure out your love life.
In my work on disability, I often talk about the importance and focus in on people’s abilities rather than the difficulties, because that’s how we usually think about people in our lives, when we haven’t labeled them disabled. This is doubly important with an aging family member, who may themselves be unduly focused on what they can no longer do, and forget about all of the wonderful ways that they can still be contributing members of their society, and of the lives of their family and friends. Even the early stages of dementia don’t necessarily preclude this formulation, and it’s worth focusing on it, emphasizing it, and fostering it where possible.
This will also help to spiritually support the caregiving spouse or child. It’s hard, the first time or 10th time that you have to provide care to your other half, and even harder to do so for those who provided care for you at a younger age. It is easy to begin to feel orphaned or widowed, like you have lost that partner or that parent as they have become a dependent. If, on the other hand, they continue to support you in almost all of the ways they always did, while still needing help with those things that have changed, those feelings will be greatly reduced, though probably not gone entirely.
This brings me to my final piece of advice. Get support of many kinds and don’t feel bad about it.
Number one: it’s incredibly difficult to have to deal with the feelings of the preceding paragraph, and you’ll probably feel guilty for having them, but you shouldn’t. It’s all right to feel pain at the feeling of injustice as that inevitable transition from caregiver or helpmeet to dependant continues. You should draw the careful balance of not entirely hiding it from the individual, who will probably know that you’re no longer being honest with them, while still seeking your major support from other sources. An example of this might be saying something to the effective, “yeah dad, it’s difficult and a little bit strange, but look at how much great time we get to spend together. It gives me so much more access to get your advice on these business deals that I’ve been going through.” Then, you do your real venting to a friend or mental health professional, as long as you do it somewhere.
Number two: no one can do it alone. I have a moderate physical disability, and I hire a team of five people to meet my physical needs. Regardless of the level of need, no one should have less than two caregivers, and probably not less than three. You need to have the freedom to have other priorities, be they work, sleep, your own life or whatever. Caring for another individual does not mean providing all the care yourself, and it does mean taking care of yourself, including living your life with some balance.
There is no magic solution to the challenges posed by age acquired disability. No amount of words on a page, or strategies will credibly change it from a loss to a positive. Yet, that doesn’t mean that by doing it right, we can’t make the underlying life as wonderful as possible, and the loss just one more challenge to be dealt with. I hope that these ideas will provide some support in that aspiration.