Your aging parent may have demanded something from you long ago: “Promise you’ll never put me in a home!” And you may have promised that. Perhaps you never thought through the implications. For elders who saw what healthcare was like before Medicare in 1965, their fears are founded in what things looked like then: unregulated warehouses for old people. Assisted living did not yet exist. Choices were few and none of them looked like anything other than what descriptions they were given. These included “God’s waiting room”, “a place you wait to die”, “hell hole” “it’s a bunch of decrepit old people” and lots of other dark descriptions. No wonder they fear them.
What Does Being “in a Home” Mean to Aging Parents?
What’s in their minds about “homes”? To them, they are all lumped together in an image of nightmare existence such as from a Dickens novel. But today’s reality may be very different. Good and even excellent places to live are available for elders who have lost their independence due to aging. And sub-standard places also exist which would live up to the negative image in an aging parent’s mind.
What is a family with an aging parent supposed to do, with that never-put-me-in-a-home promise hanging over your head?
What Choices Exist For Them?
First, consider all options. Care at home is expensive but depending on need, it may not be as expensive as moving to an assisted living facility. Some aging parents can adapt to social life, connections with others and meals in common, all of which group settings offer. You can’t get that living at home with a caregiver. Assisted living can be satisfying, can create worthwhile friendships and enjoyable activities, but it does not work for everyone.
Care at home full time, around the clock can be far more expensive than a care home. One client at AgingParents.com, where we offer advice and counseling to families of aging loved ones, is paying $350,000 a year for non-skilled care at home. And the cost keeps rising. He is wiping out all of his savings but it is what he wants. Equity in his house will be tapped so he can keep paying. He is 98 years old, has dementia and needs a lot of help.
A critical matter to consider is what level of care your parent needs when aging takes a visible toll. When a person can’t manage the normal activities of daily living (”ADLs”) alone anymore, it is time for a decision about getting the help they require. ADLs include bathing, toileting, walking, eating, dressing and getting out of a bed or chair. Quite a few elders do need help with some or all of these things over time. One can still enjoy a measure of independence even with someone assisting with these ADLs. For a social person who can adapt to giving up one’s own home and can enjoy regular interactions with others, assisted living can be fine. A period of adjustment must be anticipated and it can be rocky. This kind of setting doesn’t work for an avowed loner who will shun the groups and efforts to get him to participate. In some cases, a move to assisted living turns out to be an expensive mistake. Family must be realistic in figuring out if your aging parent is a fit for community life.
If your aging parent needs anything the law deems “skilled care”, assisted living homes do not and cannot provide that. Skilled care could include physical, speech and occupational therapy, nursing supervision, irregular insulin administration, feeding tubes, wound care, and numerous other things. This is not to say that an agency providing skilled services could not come into the assisted living home and give the skilled care. It does mean that the assisted living home itself would not supply it and that payment for skilled services would come from another source. In some cases Medicare would pay, but the monthly assisted living home’s fees would not cover those services whether Medicare coverage were available or not.
Nursing homes, the thing aging people fear most, are the only locations in which long term skilled nursing and therapy are available for the average person and for low-income elders. For the wealthy, skilled care can be purchased out of pocket and delivered to the home for most things a nursing home would provide. These services are not available for home health everywhere, but in metropolitan areas they usually are. For example, one can get doctors’ home visits through a “concierge” practice, which requires an annual fee not covered by Medicare. A privately paid RN can visit to deliver skilled care the “non-medical” home care agency cannot provide. Except for a short term, Medicare does not typically cover that RN either. Some agencies allow private pay clients to use their employees’ services.
When someone recommends a nursing home to you for your aging parent, and sufficient assets are available to pay out of pocket for just about anything, it is time to ask the treating physician if the necessary treatment and care could be delivered via privately paid providers at home. Physicians don’t automatically suggest that, as most folks could not afford this possible alternative to a nursing home. Ask about what is recommended for your aging parent, do your research and learn what your choices are.
- Most of us are going to need some help as we age, particularly if we live long. The kind of help needed requires careful consideration. Home care can meet the need, though it is a costly choice among costly choices.
- Assisted living (AL) can be a fine option but it does not work for everyone. Consider your aging parent’s personality and preferences before urging this choice on them. Some elders can be fine and some are miserable in a group setting. AL is not a nursing home in a nicer setting with better furniture.
- Nursing homes are the most likely place for an aging parent with high needs, and complex medical conditions requiring skilled care. If sufficient assets are available, consider paying out of pocket for the high cost of remaining at home and having skilled services delivered there. Find out if they are available via private pay in your parents’ location. If so, you can keep that “never a home” promise. Without extensive assets in the face of a high need for skilled care, you may not be able to keep that promise.
- Be a good consumer, understand your and your aging parent’s choices and keep open communication. Available assets drive many decisions about care. Listen to your loved one’s fears and honor what they want when it’s possible to do so. I explain more detail for things that have no easy answers in my book, The Family Guide to Aging Parents at com. You can also get a free eBook on how check out a nursing home here.
Carolyn Rosenblatt, RN, Attorney, AgingParents.com