When Fred Schwartz was diagnosed with multiple sclerosis in 1994, the financial challenges that lay ahead were not top of mind.

“My health was my main concern,” he said. “I didn’t know what was going to happen.”

But the costs of his chronic illness began to loom large eight years later when Schwartz, 52, left his job as an insurance reimbursement manager for a nursing home company. By then he could no longer use his legs.

In the years since, he has painstakingly pieced together financial aid from numerous sources — for living expenses, caregiving and special equipment — that he anticipates will allow him to live at home for many years.

As the population ages, the numbers of people diagnosed with chronic illnesses are rising. A diagnosis may be alarming enough, but equally frightening can be the costs for medical treatments, home renovations and other expenses. Some people may be forced to retire earlier than they had planned, resulting in a loss of income and potential retirement savings.

Dr. Carolyn McClanahan, also a certified financial planner in Jacksonville, Fla., said her clients with new diagnoses “have three worries from a financial standpoint: Will I be able to afford to take care of my illness? Will I leave my family devastated?” And, if the sick person runs the family finances, she said, her client will worry “whether the spouse will be able to take over.”

Here are some things to consider.

Seek information

One of the first steps is to build a team of professionals, experts say. Besides your doctor, your team could include an elder-law attorney, who could draw up health care and financial directives and plan for Medicaid to pick up the costs of long-term care if assets are depleted; and a financial adviser versed in chronic-illness planning. A geriatric care manager, hired even for just a few hours, could advise on care, home modifications and other services.

Local community groups could recommend services including rental subsidies or housing with amenities for those with disabling conditions. Some programs match older adults with younger roommates who can provide help in exchange for no or low rent.

Another possible source of guidance is an advocacy organization.

At the National Multiple Sclerosis Society, “navigators” field 40,000 inquiries a year, said Karen Mariner, a vice president. The group might connect callers to financial planners, review insurance coverage and point callers to government agencies and nonprofits that provide free and low-cost services, she said. The MS Society paid for a roll-in shower for Schwartz.

“If you are new to this, you don’t know where to go,” Mariner said. “We help individuals understand what they need and how to get the resources.”

For newly diagnosed clients who are employed, McClanahan recommends that they stay on the job if they can. Besides earning income, their health insurance will most likely be better and cheaper than policies on the individual market. Employees should enroll in group plans for long-term care insurance and enhanced disability coverage, she said. Group policies generally do not require medical underwriting.

Menu of income and cash

When Schwartz left his job, his doctor helped him file for Social Security Disability Insurance, which pays a benefit to a person younger than 65 who can no longer work. Under the federal COBRA law, he paid premiums to his former employer’s health plan until he qualified for Medicare.

In addition to $900 in monthly Social Security benefits, he receives $2,000 a month from his former employer’s long-term disability plan, which he said would pay out for his lifetime.

“I was very fortunate to work for a company that had that benefit,” said Schwartz, who also earns roughly $700 a month helping an accountant prepare tax returns. “I also have my family.”

Schwartz’s father used proceeds from a property sale to build Schwartz a house in his native New Jersey. They own the house jointly, enabling the son to qualify for a state property tax break for the disabled.

Another piece of the patchwork: a state disability program that pays for more than 30 hours a week for a caregiver.

A case manager for the MS Society arranged for the care. The aide prepares meals, drives Schwartz to appointments and more. The aide and his wife live in the house, rent-free.

Cut health care costs

Drugs can be a huge expense for chronically ill patients. Medicare beneficiaries should comparison-shop for Part D drug plans every year during open enrollment, McClanahan said, because drug plans might drop medications from their formularies or raise prices.

Some drug manufacturers and nonprofit organizations offer savings programs. Depending on their insurance, some patients save money by switching from self-administered drugs to those administered in a clinical setting.

Before she became eligible for Medicare, Deborah Rosenwinkel — who lives in Wheaton, Ill., and has rheumatoid arthritis — used a manufacturer’s discount card for Enbrel, which she injected at home. The $12,000 card covered her deductible and copayments, and her insurance picked up the balance, of up to $80,000 a year.

But when she turned 65 and enrolled in Medicare, she was no longer eligible for the card. Even when a Medicare Part D plan covers Enbrel, annual copayments could run as much as $7,000.

Rosenwinkel’s rheumatologist switched to a new medication injected in the office, so it falls under Medicare Part B, which covers outpatient services. Medicare and her private Medigap plan cover the total cost.

The price tags for wheelchairs and other durable medical equipment also can be steep. Medicare pays 80% if the doctor and supplier are enrolled in the program. Disease-specific or local aging organizations may be able to recommend nonprofit groups that provide free or discounted equipment.

Schwartz’s wheelchair cost $30,000, with a $6,000 copayment. But Medicare did not cover a standing frame, which improves muscle and bone strength by enabling users to stand with support. To help cover the $15,000 device, he raised more than $10,000 in a GoFundMe campaign.

Another source of financial help: tax write-offs. Taxpayers can deduct medical expenses that exceed 7.5% of adjusted gross income. Eligible costs include: drug expenses, home improvements such as support bars, assisted-living charges and medical equipment. To tap the deduction, people with large medical bills should consider accessing sources of taxable income, such as an individual retirement account, McClanahan said.

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