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Senior in a wheelchair

We are retirement-age parents supporting a special needs adult

by John Levan | Contributor
Dec 7, 2021


“The best-laid plans of mice and men often go awry.”

– Robert Burns in “To a Mouse.”

Yes, Robert Burns wrote his poem more than two centuries ago to a mouse whose nest was upturned and destroyed by a farmer’s plow. Still, it has broad and far-reaching implications today, as most of us have already discovered. Things don't always work out as we planned them. The cynic in us might even add that they seldom do. We don't have as much control as we would like to think, so the lesson that life teaches us is not to dig in too deeply but instead maintain our flexibility.

Case in point: retirement planning, a process that evolves over decades, leading up to those glorious days of stress-free relaxation with fewer responsibilities.

But the reality of retirement falls short of the dream for many parents who reach their so-called golden years having an adult child needing their physical, emotional and financial support. Some parents have many years to plan for a child born with special needs or had developed them in childhood. Others are caught off-guard closer to retirement and must scramble to develop a plan to deal with it.

My wife and I were a happily married couple looking forward to the freedom that leaving full-time work would afford us in another year or so. We envisioned impromptu day trips, week-long visits to our older daughter's family in another state, golf outings or even winters in Florida to escape the depressing weather of the Northeast.

While we are grateful for the life we have, it has not been what we imagined. Life threw us a couple of curves — with a nasty knuckleball mixed in for good measure — just about the time all these fantastic life events were about to happen. While two of these “black swans” are in our rear-view mirror now, one of them is here to stay. And that is the one I would like to share.

Man proposes, God disposes

Centuries before Robert Burns wrote his apology to a field mouse, a German canon regular named Thomas à Kempis wrote his version of “the best-laid plans.” Often translated as “man (humans) plan and God laughs,” the words seemed to be ringing true in my life.

Around the time I was turning 60, I received the unwelcome news that I had leukemia. After surviving the treatments, I got the same diagnosis four years later. As I recovered from yet another round of chemotherapy, our younger daughter began displaying some worrisome symptoms, starting with losing her vision of the horizon. Although that particular issue passed, there would be many others, including her ability to walk.

Another shocking diagnosis

Our daughter's initial symptoms began when she was in her early 30s, and she was immediately diagnosed with multiple sclerosis (MS). MS is a disease of the central nervous system (brain and spinal cord) during which the immune system attacks the protective sheath covering the nerve fibers. This disrupts communication between the brain and body, causing many issues that can vary from person to person.

Some people with MS have few symptoms, require little or no treatment and lead a relatively normal life. Others, our daughter included, can no longer walk, feel fatigued much of the time, cannot feed themselves, lose control of their bladder and have vision problems.

MS is an autoimmune condition, meaning that the immune system starts attacking a healthy body part. No one has been able to determine with certainty why the immune system does this, but researchers believe a combination of environmental and genetic factors has something to do with it. Unfortunately, there is no cure for MS, although various treatments can control the symptoms.

Returning to previous roles

A special needs adult in a wheelchair.

Feeding, changing diapers and assisting with bathing are tasks that most couples relish regarding their young children and, later, grandchildren. As a father, I took pride in my ability to care for two little girls on nights when my wife worked. I read to them, gave them snacks, took charge of the nightly baths (including drying their hair) and tucked them into bed with a clean diaper.

Those are some of our fondest memories, but we move on from them eventually, never imagining that we could be in those same roles after we retire. Yet, that is precisely what happened to us and scores of other retirement-age parents who care for a disabled adult child.

We hear about role reversals with elderly parents and their grown children. In this scenario, the child now takes on the role of being a caregiver for an aging parent or parents. But that will never happen with us; instead of reversing the roles with our daughter, we are reverting to previous roles.

And therein lies the problem: The physical and mental strength required to function as a caregiver have declined for both of us, prompting us to ask ourselves: “How long can we keep doing this?”

Some help is available

Fortunately, many states, my home state of Pennsylvania included, have Support Services Waivers programs that provide funds for various services and benefits. The state's Independence Waiver, designed for disabled adults, offers our daughter services that allow her to remain in her home.

Among its services, it allows for 92 hours of paid care each week. And while this helps and is much appreciated, a severe shortage of reliable and qualified caregivers means my wife and I must fill in many of the weekly gaps in the coverage.

Some of the program's services include:

  • Adult daily living services
  • Home health
  • Accessibility adaptations, equipment, technology and medical supplies
  • Nursing services
  • Occupational therapy services
  • Physical therapy services
  • Specialized medical equipment and supplies
  • Speech and language therapy services
  • Assistive technology
  • Home adaptations (bathroom conversions, ramps, etc.)

While most of these services are approved quickly, the approval process for adaptive equipment is painfully slow. And some people, including my wife and me, could not wait the months it took as our daughter's condition deteriorated rapidly.

As a result, we purchased a chair lift when she could no longer make it to her second-floor bedroom safely. We bought a scooter when she was still able to balance on one. To get her in and out of our vehicles, we spent nearly $10,000 on a lift that picked her up from her wheelchair and swung her into the car’s passenger seat.

When the waiver program provided her with a motorized wheelchair, we bought a converted van that allowed her to drive into the rear and be safely strapped in place. I traded in a late-model SUV so we could afford the van’s $40,000 price tag. Up to now, we have used up tens of thousands of our retirement dollars with no end in sight.

The strain is not restricted to our budget

Retirement-age individuals with the responsibility of a special needs person face a host of stressors. Among those are the insurance companies that require constant proof of the need for continuing coverage.

Every few months, we receive notice that our daughter's hours of paid care are being reduced. We must get her physicians involved and appeal the cut. And while we have managed to hold on to most of the hours, the stress and frustrations border on being overwhelming for us.

While we understand the need for this process with more and more people abusing the system, the fact remains that our daughter's condition is not temporary. She is not a malingerer but rather someone with a progressive disease from which she is unlikely to recover. It places extra financial stress on us, but it doesn't end there: How do we enjoy an average retirement and all that it offers if we are constantly tied to our roles as caregivers?

Another constant worry is the ever-changing state of our daughter's health. Those with MS are prone to issues such as urinary tract infections (UTI). Like everything else that affects someone with a compromised immune system, a UTI is dangerous, quickly causing our daughter to become unresponsive. On several occasions, we watched emergency personnel wheel her out for a trip to the emergency room, where she remained for several days.

The responsibility we feel for a loved one who is primarily helpless and depends upon us in many ways is hard to explain to someone who hasn't gone through it.

Don't Social Security disability benefits ease some of the financial worries?

Without knowing how disability benefits through the federal government worked, I always assumed they were available for anyone who needed them. But that isn't the case. To qualify for Social Security disability benefits, you must have held jobs covered by Social Security. And our daughter had not paid enough into Social Security to receive benefits.

What happens in the future?

If there is one question that keeps us awake at night, this is it. Although we are healthy and still in our early 70s, the specter of old age is hovering over us. Who will care for and about her as we have?

Our daughter is fortunate in some respects. She has a young man who seemingly loves her and has promised to be there for her. We want to believe that is her long-term solution, but for now, we will remain in our current roles, taking brief parcels of time together and being grateful for what has not been taken from us.

Alliance America can help

Alliance America is an insurance and financial services company dedicated to the art of personal financial planning. Our financial professionals can assist you in maximizing your retirement resources and achieving your future goals. We have access to an array of products and services, all focused on helping you enjoy the retirement lifestyle you want and deserve. You can request a no-cost, no-obligation consultation by calling (833) 219-6884 today.

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