Long-term Care and Skilled Nursing Options
When we can no longer take care of our loved ones due to a medical condition, like dementia, it's often a heartbreaking decision to turn over their care to others. This is made even more difficult by our byzantine system of available care options, and how they're financed. There are other resources available, but in this column, I'll try to break things down simply.
Think of available care in two ways: assisted living, and skilled nursing care.
Assisted living options now vary tremendously. Some provide little in the way of help, with residents, usually older adults living independently for the most part. Some have varying levels of care, with those who are able starting out managing their own needs, but with increasing help as their needs change. In some assisted living arrangements, a resident can stay in the same location through the end of their life, with care provided by staff.
A subset of assisted living places is called memory care. Not all older people need such care, but some of those with dementia do. Memory care units typically have locked doors because many dementia patients wander and can get into dangerous situations otherwise. Memory care units often have increased staffing compared to other assisted living facilities, but are still not quite at the level of skilled nursing facilities.
In a skilled nursing facility (sometimes called nursing homes), the patient can expect medical attention, to the extent needed. Patients can be there for any number of reasons, from dementia to injuries. Some stays are short-term, some more permanent.
Both assisted living places and skilled nursing locations are expensive, incredibly so. They can each cost anywhere from $6,000 to $11,000 per month, and more. The vast majority of us can't afford such costs on our own. The exceptions would be the wealthy, those with quality pensions and some savings, and those who have purchased long-term care insurance.
Long-term care insurance can provide peace of mind, but it's also expensive. When policies were issued years ago, many were underpriced, and now people are finding that when they renew their policies, the premiums are exorbitant or the benefits are scaled back. Financial advice podcaster Clark Howard states bluntly the LTC market is “broken.” But, for those who may want to consider this, Howard has a guide on his website, clark.com.
If one is able to an afford assisted living, it can be a viable option for many families, especially when care at home has become too difficult, or the patient would be a danger to themselves or others at home. It's also reasonable to consider when the stress of care has become too much for the caregiver. Many people in this situation feel guilty, but remind yourself it's OK to care for your own needs and those of the rest of the family too.
Skilled nursing facilities can also be expensive, but for those living in California, an advantage is they can be covered by Medicaid. And it can be an option without the spouse or child of the patient having to go broke. In some other states, Medicaid doesn't include this, and some spouses end up getting a paper divorce to ensure care can be provided. One must be aware however, many people don't know long-term care is a Medicaid service, even some Medicaid employees once told me otherwise. And, the application process can be cumbersome and confusing.
Also in California, the state has realized in recent years there can be a cost savings to allow Medicaid to pay for some assisted living facilities, as this option is still cheaper than skilled nursing. This is currently in the experimental stage, and there's a pilot program operating in some facilities, in certain counties. The last I heard, Tulare County wasn't one of those, but some nearby counties are.
With our own situation, Valley Adult Day Services became invaluable. I was far too young to retire as my wife went through dementia, and one of the reasons VADS exists is because retired or not, many families wish to stay together as long as possible. My wife was able to stay at VADS during the daytime while I worked and our son was at school. I had the peace of mind of knowing she was safe and I could keep working and have her live at home. I honestly don't know what I'd have done without VADS. They gave me another year and a half with my wife at home when otherwise I might have had to place her before I wanted to (though I don't know how I'd have paid), or quit my job.
Still, we couldn't do it all the way to the end. My wife's disease progressed to near the end stages in the early part of the COVID pandemic. VADS closed temporarily, but even if they had not, I was close to needing to place her anyway. She was having difficulty walking, falling often, and caring for her at home, especially trying to work at home, had become stressful beyond what we'd previously experienced. In May 2020, I made the difficult decision to have her placed in a local skilled nursing facility. This turned out to be her final few weeks.
There's often a great deal of guilt in the decision to place a loved one, but it's the right choice in many cases. But, until that time comes, an organization like Valley Adult Day Services provides an option to keep your loved one at home as long as possible.