A Beautiful Legacy

Dementia is a journey of struggle and sadness, but it is rich with examples of beauty and kindness.

Rick’s wife had dementia. He made the decision to care for her at home even though he knew it would be difficult and that it would change his life dramatically. With the certainty of someone who has thought long and hard, Rick explained, “Love is a decision.”

Caring for a loved one with dementia is heartbreaking, exasperating, humbling . . . Many things no one ever wants to experience. Being the primary, hands-on caregiver is herculean.

For Rick, normal activities became creative challenges.

His wife was unsteady on her feet but refused to use a walker. She did well at the grocery store, because holding onto a shopping cart provided stability; she didn’t resist, because it was something she was used to. So Rick started taking her to the grocery store every day.

He said, “It gets expensive, maybe $20 a day in groceries just to get her out walking.” Even so, it was a solution to the problem of how keep her physically active.

Did Rick take on this challenge because he loved his wife? Because she would have done the same for him if the roles were reversed?

Rick said his decision went beyond the two of them. He said, “The way you care for your loved-one is a legacy you leave for your family.”

He recognized that even if they were not directly involved, his children and extended family would be observing and considering his choices. The compassion and patience he exhibited (or not) would become part of their family “culture.”

Obviously, we can’t make a big decision like this based on what others might think. Realistically, it’s not always feasible and/or safe to keep someone with dementia at home. But for Rick, it was an option, and he decided to adapt and sacrifice – for his wife’s sake and for what it meant to his family. How beautiful that, in a time of pain and sorrow, he thought beyond himself with so much love and generosity.

Rick spoke at an Alzheimer’s Education Conference in Sacramento last year. I don’t know, one year later, if his wife is still at home with him – or even if she’s still alive. But I loved hearing his story and was grateful to add it to my collection of the many unexpected blessings of dementia.

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What’s the Difference between Assisted Living and a Nursing Home?

Basically, there are two different types of care-homes for seniors who are not able to live on their own anymore: “Skilled Nursing Facility” and “Residential Care Facility for the Elderly.”

It’s a little confusing though, because, in addition to these “official” names, there are many “common” names for each option. On top of that, people  tend to use the names interchangeably – confusing matters even more.

Skilled Nursing Facilities are for people who require 24-hour nursing or medical care and supervision. These days, they are primarily for rehabilitation: For example after a stroke or a broken hip.

Some of the more common names for Skilled Nursing Facilities are:

  • nursing homes
  • convalescent homes
  • rest homes

Although some people with dementia require 24-hour supervision, that need is not considered “medical,” so dementia alone does not qualify someone for nursing-home care.

Nursing homes aren’t usually equipped to handle dementia-specific issues like wandering.

A Residential Care Facility for the Elderly (RCFE) is the more common option for long-term care for someone with dementia. RCFEs are also called:

  • assisted living (usually the big, apartment-like setting)
  • board and care (a smaller setting or private home)
  • memory care (dementia-specific)

Although some RCFE communities have a nurse on staff, they are not a medical setting. They provide care and supervision. Their services include meals, socialization, and assistance with the “activities of daily living” (ADL): Dressing, personal hygiene and medication management.

Some assisted living communities specialize in dementia care. Some have a designated area for residents with dementia. Some are not set up for dementia at all.

As far as the cost goes, Medicare and other health insurance plans pay for some skilled nursing (all sorts of rules and restrictions, of course) but not for assisted living.

There are organizations that can help you sort through all the options and find the right placement for your loved-one. Their help is free; my understanding is that they get paid with a finder’s fee from the care-facilities. Senior Care Solutions is one I’ve worked with (and was very happy with) in the Sacramento area: www.seniorcs.com.

* Disclaimer: I live in California. The terminology may be different elsewhere. If so, please share; I’d love know how things work where you live.

My dad with his mom when she was in a nursing home after she'd had a stroke (sometime in the 1990s).

My dad with his mom when she was in a nursing home after she’d had a stroke (sometime in the 1990s).