13 What About Retirement Disability?
Frank had one and only one fear going into retirement. Frank had been caring for his wheelchair-bound wife for years, leading up to his retirement. They’d made the best of it, having continued to enjoy their life together. His wife kept their home as well as she could, while Frank worked a regular schedule, although with frequent days or half days off to take his wife for medical visits. Frank’s retirement came as a big relief for both of them, giving Frank his full time and freedom to continue caring for his wife. Yet Frank rued the day when his retirement would eventually reach the point of his own disability, when he would no longer be able to care for his wife, requiring her residential institutionalization.
Disability
Retirees can have genuine, deep, and reasonable concern for their encroaching or sudden disability. Retirement can be a great time of life, for as long as a retiree has enough ability to remain active and relatively independent. But as we age, the probability of disabling disease or decline, if not sudden demise before disability, gradually grows to the point of certainty. Disability effectively ends retirement, issuing in a new and final stage of nursing or other dependent care that has none of the magic and charm of retirement. See the guide Help with Your Demise for a sensitive treatment of that last stage of life. What, then, should retirees make of disability? This chapter addresses common issues retirees face in trying to avoid, delay, minimize, and deal with the consequences of disability. The chapter’s message is not to ignore disability as a retirement issue but instead to treat the disability issue responsibly, like other retirement issues.
Independence
Independence is a clear but peculiar retirement goal, one that disability peculiarly affects. We are never truly independent at any stage of life. Even during our strongest and most vital years, we may depend to degrees and in ways on others for food, shelter, clothing, transportation, and employment. For retirees, though, independence generally means the ability to remain in one’s own home providing for one’s own immediate care, without direct assistance other than the natural assistance of a spouse. Independence means not having to move in with a relative or into assisted living or a nursing home. By definition, disability of one kind or another is precisely the thing that denies a retiree that ability to live in the retiree’s own home alone or with a spouse. But independence isn’t absolute, as already suggested. Neither is disability. Both independence and disability come in degrees. The duration and quality of retirement thus lies along a spectrum between independence at one end and disability at the other end, with several potential stages in between. You may find it helpful to think of disability and independence in this subtle way.
Check-In
A first significant issue relating to disability is to monitor both its approach and sudden occurrence. The sudden occurrence of a lone retiree’s severe disability in the home can leave the retiree at risk of going uncared for, with the event undiscovered. A stroke, fall downstairs, fall in the shower, seizure, or other event could leave a retiree unable to move or communicate. If the retiree is alone in the home, not just hours but even days could pass without the retiree’s discovery, severely complicating the retiree’s medical condition. If you are alone in your home as a retiree, carry a cell phone or medical alert device at all times. Arrange for daily check-in calls with a reliable relative or friend, or with a local social-service agency. Check-in calls have been lifesavers for lone retirees suffering sudden disability in the home. Prompt medical care may be the key to recovering from a temporarily disabling event to remain in your home.
Monitoring
Monitoring your health for encroaching disability can be equally important. If you catch a potentially disabling medical condition in time, you may be able to slow or avoid its onset. Regular medical checkups are a good start. But also watch on your own for concerning declines in your abilities inside and outside the home. Your problem may not be a medical condition as much as issues with strength, balance, awareness, and agility or similar conditions of aging that could lead to injury and disability. If you discern increasing issues of that kind, seek an evaluation from a geriatrics caregiver or manager, physical or occupational therapist, or another professional with the skills to prescribe or provide a rehabilitative regimen. A little physical therapy may go a long way toward maintaining your abilities and independence in your home, engaged in enjoyable retirement activities. Get help as soon as significant signs and symptoms arise, before a disability crisis develops.
Types
The type of disability that retirees suffer can obviously affect the disability’s onset, progression, and treatment. The type of disability can also affect the impact on the retiree’s independence and the amelioration of that impact. Not all disabilities are alike in how they affect a retiree’s ability to live independently. And each type of disability may require significantly different measures, at significantly different cost and inconvenience, to maintain as much independence as safely possible. Mental disabilities deprive retirees of cognitive awareness and communication, reasoning, and procedural skills, even if the retiree is otherwise perfectly physically capable. Physical disabilities, by contrast, deprive retirees of movement, strength, balance, and agility, while leaving them perfectly mentally sharp and aware. Medical conditions that do not immediately disable either mentally or physically can also affect a retiree’s independence, when requiring monitoring and treatment. A condition exposing a retiree to severe seizures, for instance, or disease requiring daily dialysis or chemotherapy, may significantly limit the retiree’s activities. Recognize that different disabilities require different responses to maintain the greatest degree of independence.
Impacts
The impacts of disabilities can be several and subtle. Impacts, like disability and independence, also exist in degrees. Even the big question of remaining in one’s own home, which can look like an all-or-nothing, yes-or-no question, can involve a matter of degrees. You may, for instance, have to spend some time in a rehabilitation facility after an illness, procedure, or injury but then be able to return home. You may find yourself moving between a facility and home over the course of treatments or the progression and regression of disease. You may even be able to spend daytimes in your home under your spouse’s watchful care but need to spend nighttimes in a facility for your spouse’s rest. Or you may be able to extend your stay in your home with the help of a live-in relative or professional in-home care, in effect turning your home into a nursing facility. Recognize degrees, durations, cycles, and stages in the impacts of disability. Impacts often aren’t as clear as all-or-nothing things.
Progression
We also tend to see aging, disability, and their impacts as a steady march toward the grave, when that straight-downhill progression often isn’t the case. If you suffer disability in retirement, it may instead be only a brief one-time thing. Your disability may alternatively be periodic, every once in a while, or it may involve a downward spiral with each episode more impactful and longer than the prior episode. Disabilities can also have gradual onsets over years, hardly noticeable to the retiree, as in the case of some neurological or mental conditions, or sudden onsets in minutes, for instance from a fall, heart attack, or stroke. The progression or course of disability can be every bit as significant to the steps you take in response, as the specific disability and impacts are likewise significant. If, for instance, your disability is only a single episode with full recovery, then its management may involve dealing responsibly with the episode while preparing you to return home. If, instead, your disability is clearly due to an incurable progressive condition, your management of it may better prepare you for a transition into long-term care. To respond appropriately, observe and carefully consider your disability’s progression, along with the prognosis for its underlying cause or condition.
Remedies
You have two main strategies when facing the onset and progression of disability in retirement. Your first approach should be to resist and remedy the underlying condition causing or contributing to the disability. Preventive measures and remedial care may help you avoid, slow, or correct the condition. Some conditions, like a severe stroke without prior high blood pressure or other warning signs, may not offer a retiree much opportunity to take preventive or ameliorative measures. You had no warning, and your recovery may be too slow and limited to expect a return home. You may be simply along for the bumpy ride, at the mercy of your condition. But in many cases, you may have a clear hand in preventing and avoiding, or correcting, the condition. Dietary and lifestyle changes may slow heart disease or diabetes. Sticking to a regimen of medication and therapy may ease arthritis and strengthen muscles around deteriorated joints. Undergoing a knee or hip replacement, or similar procedure, may preserve or restore mobility and ambulation. Work closely with doctors, nurses, therapists, nutritionists, and other medical professionals on remedies. Get second and third opinions until you are confident that you have taken the best steps to address your underlying medical conditions.
Responses
Your second strategy for dealing with the onset and progression of disability should be to evaluate, address, and preserve your independent living circumstances. You may not be able to do much to slow or avoid the progression of the underlying disease causing your disability. But your response to the onset and progression of disability in retirement can be a significant factor in its effective management. You may be able to play a big role in preserving your independence and the quality of your retirement, notwithstanding the onset and progression of disability. Some measures may be obvious and relatively simple. If you have a step or two steps to get into and out of your home that you can no longer navigate, then installing a ramp may be appropriate. If you can no longer shovel snow and mow the lawn, then services may be available to do so. If cooking and cleaning have become too difficult, a meal service and cleaning service may be available. Other measures, though, may be less obvious and simple. Get the professional help you need to evaluate your in-home care. Health systems today train certified aging-in-place specialists (CAPS), geriatric care managers (GCMs), occupational therapists, and aging life care experts to help aging retirees remain in the home. They may surprise and please you with the modifications, services, and other measures available to keep you relatively independent in your own home.
Dependence
In all the fears, concerns, and questions over the onset and progression of disability, and its effect on your retirement independence, you may find it helpful to look at the disability question from the opposite standpoint of your dependence. As the beginning of this chapter highlighted, we are never truly independent, not even when at our strongest and most vital. All of us depend on others for goods and services, throughout our lives. While independence, meaning to live in your own home substantially on your own, is a good foundation for an enjoyable retirement, preserving your retirement independence can also come at significant costs. Many retirees who finally consent to transitioning into assisted living or a nursing facility wonder in retrospect why they waited so long, after struggling so badly in their own home. Before the quality of your independent life declines significantly, investigate assisted or other transitional living, and nursing facilities. While you are still vital and independent, take an interest in how your friends and acquaintances are navigating their own transitions into assisted living. Look forward to joining an assisted living community, where you’ll get the support and care you need. Don’t ruin your last years in a losing battle for independence, when you’ve always been dependent to a degree, and recognizing that you need better care and support may significantly improve your life, while easing the concerns and burdens of those who care most for you.
Reflection
On a scale from one to ten, how concerned are you over becoming disabled and losing your ability to remain in your own home in retirement? Do you currently have specific conditions that you recognize may eventually result in your disability? If so, can you make lifestyle changes or embrace a medical regimen to slow the progression of those conditions? If you live alone, do you keep a cell phone or alert system on your person at all times in case of a fall, stroke, heart attack, or other sudden emergency condition? Do you have a daily check-in call or procedure? Is your greater concern over mental or physical disability? Do you have a family history of either mental or physical disability of a particular type, for which you should be monitoring your own condition? Do you currently have a growing disability that you should address before it significantly affects your independent living? Do you have a preferred assisted living facility or nursing home in your area or another location, in the event of your disability? Have you investigated whether you can qualify for that facility and what steps you can or should take now to do so?
Key Points
Disability is the greatest concern of retirees valuing independence.
Recognize that independence is relative, not an all-or-nothing thing.
Keep a cell phone or alert system on your person if living alone.
Monitor your physical and mental decline for approaching disability.
Appreciate the different impacts of mental and physical disabilities.
Disease and disability progression isn’t always a straight line down.
Follow medical and lifestyle recommendations to slow disability.
Respond promptly and responsibly to disability’s onset with help.
Study and prepare for a smooth transition into assisted living.