When Life Changes Overnight: A Daughter Looks Back at Dementia and Long-Term Care Needs

What would you do if your life changed overnight?

It was a question I had never really pondered until it happened to me.

On Easter Sunday 2019, I suddenly became full-time guardian and caregiver for my mom, who was diagnosed with dementia following a health crisis.

I knew my mom had been starting to show signs of dementia, and I had taken a few steps to put some care in place for her with volunteer assistants from a local non-profit. But she lived alone, drove, cooked her meals, etc. I thought a descent into dementia would be a gradual decline, something we could manage over time until it became obvious to everyone – including her – that she needed more help.

What I didn’t know was that my mom had large stashes of opioids, prescribed to help manage chronic pain, and she was taking that medicine irresponsibly because of the dementia. Ultimately, she had an opioid withdrawal health crisis, and we simultaneously received the dementia diagnosis, along with the hard news that she could no longer administer her own medicine, live alone or drive.

We would later learn that my mom had vascular dementia, a rare condition affecting fewer than 200,000 people in the U.S. each year, which is characterized by sudden, drastic “steps down” in brain function, which creates large changes in physical and mental ability.

Because of the sudden nature of my mom’s health crisis, I had to take time away from work while I tried to determine the next steps – where would she live? Who would take care of her? What legal documentation needed to be created? What about all of the household things that needed to be taken care of in the short and long term, from the milk expiring in her refrigerator at home to the trash that needed to be taken out to the bills that needed to be paid?

Though I wanted to keep my mom in her home, if possible, she had a puppy, and I had two small children – ages two and four at the time – in addition to a husband and a demanding job. What would happen if the caregivers for my mom called in sick? I couldn’t just step in at a moment’s notice. How would I manage a schedule of caregivers around the clock?
It soon became apparent that I couldn’t take on the logistics of keeping my mom in her home, and having her and a puppy, in addition to my own small children, in my home was not practical.

I began researching facilities that could care for her needs immediately, as well as when she declined further. I had never really given much thought to how costs for assisted living or memory care facilities were covered, but I wrongly assumed that health insurance would cover some of it. I was in for a rude awakening.

Health insurance does not cover any costs for assisted living, memory care or skilled nursing, and Medicare, the major public insurance program for older Americans, does not cover most long term services and supports expenses.

Although Medicaid provides long term services and supports financing to those with chronic disabling conditions, it is available only for individuals who meet income and other eligibility requirements.

The qualifications for Medicaid vary by state, but in my state, you couldn’t qualify for Medicaid unless you had less than $2,000 in total assets and had income of less than $28,584 per year. Further complicating things, not all assisted living, memory care and skilled nursing facilities take Medicaid patients, even if you qualify.

This means many patients needing this type of care must be prepared to pay out of pocket. In 2019, the cost of assisted living for my mom was around $5,000 per month, with costs increasing as she needed more assistance. Memory Care, at the time, was about $6,000 per month.

Even with a monthly pension and Social Security, her income was not enough to cover those costs. She had $25,000 in disposable income available in her bank account, but I could see that we would quickly exhaust her resources.

Luckily, she had a long-term care policy she had secured many years prior. We were able to prove her eligibility to use the policy, and it paid for her care in full until she passed away in January 2021. I have no idea what I would have done without that long-term care policy to cover the costs of her care.

According to a 2022 study from the Department of Health and Human Services, they estimate that more than half of Americans turning 65 today will develop a disability serious enough to require long-term services and supports. On average, an American turning 65 today will incur $120,900 in future long term care costs (measured in today’s costs), according to the study.

Families will pay nearly 40% of those costs themselves, according to the study, with the rest paid for by public programs like Medicaid or private insurance like long term care policies.

Although I am only in my 40s, I saw the value in long-term care insurance with my mom, and I knew I wanted to have a policy in place for myself so my children never had to worry about how they would find the finances to care for me if I were to need it. I also wanted to secure a policy at an early age, to preclude the possibility of a future health diagnosis limiting my ability to be eligible for insurance.

As a result, I reached out to the SouthState Investment Services team, who have expertise in long-term care insurance. A financial advisor promptly presented my husband and I with a variety of options, helped us weigh them, and helped us select the best policy for us. They made the process so easy and helped us every step of the way.

My mom’s long-term care policy was a “use it or lose it” sort. Unfortunately, my mom paid for coverage for she and my dad for years, and my dad passed away without ever needing his policy. As a result, they totally lost their investment for him.

The policy our financial advisor helped us select is not that way. Should we never need long-term care, the policy becomes a life-insurance policy payable to our beneficiaries upon death.

My mom’s policy required monthly payments. Our financial advisor shared that there are a variety of ways to pay for policies today, including a lump-sum payment, monthly payments or a mixture of both.

Unlike the long-term care insurance policies of my mom’s era, the policy options shared with us had no restrictions on which facilities you could choose. And once you are covered, your benefits begin immediately. So, if you should have a serious injury and need extended time in a rehabilitation facility, for example, if your condition meets certain criteria, you could use your long-term care insurance to pay for anything your health insurance did not cover.

Though I hope it will be a long time before my family will need my long-term care coverage, I have peace of mind knowing it is in place, especially in case life changes overnight.

If you have aging parents, don’t wait to have the conversation with them about what their plans are and what resources are available for their long-term care. And remember that it’s never too early to think about how you can equip your family to be able to carry out your wishes for your own care.