Frustrated | Caring Choices

Nearly every day I hear at least one person say “I never expected to __________.” Often, the rest of that sentence is “live this long.” But I have also heard these other endings to that sentence:

…be in this situation.
…need help to take a shower (or change my clothes, or feed myself, etc.).
…live in a nursing home.
…outlive my husband/wife.
…have to make these kinds of decisions.

It is frustrating, confusing and sad to have to consider leaving your home to take up new residence in assisted living or a skilled nursing facility. I watched my uncle struggle with this decision a month before his death. He could no longer live alone; he could no longer walk without assistance. His legs were dying from the toes up and eventually he couldn’t even stand on his own. He needed 24/7 nursing care and for many of us, there’s only one place to get that – a nursing home.

It’s also frustrating to offer options and suggest solutions to someone forced to confront these “never expected to” statements and then have every idea discounted as unacceptable. People don’t like strangers coming into their home to provide care. They don’t want to leave their home. It sometimes feels like a no-win situation, but the dialogue must continue because the inevitable will occur with conditions worsening into a catastrophe.

There aren’t too many people who choose to leave their home and move into a facility. Usually that change is foisted upon them by infirmity in body or mind or both. If there is no one available to provide needed care or there are no funds to pay private caregivers, the only option may be a nursing home placement. Nursing home residence need not only be seen in a negative frame. Along with 24/7 nursing and personal care, they also offer ancillary services that can enhance an elder’s life. There are opportunities to enjoy meals in dining rooms with other elders who may be in similar situations. There are always activities happening that can bring small or large groups of people together with music, games or spiritual services. There are social workers on site to assist with psychosocial issues that arise (and they will arise). Many nursing home residents can even eat ice cream three times a day if they want it!

So, before you ask your children to promise to never put you in a nursing home or promise your loved one that you’ll never put them in a nursing – go out and visit your local nursing homes. Talk about what options are available if you want to remain in your own home until the last possible day. But also talk about what happens when you become too ill, too confused, or too weak to remain in your own home.

While nearly 80% of Americans expect to remain and die in their own homes, fewer than 25% of us will actually be able to do that. Most people over age 65 are living with 2 or more chronic diseases which eventually impact independence and ability to care for ourselves. We need to manage our expectations. Living well into our 80s with sound body and mind is not likely for the majority of us.

Caring Choices is available to help individuals and families figure out how to stay at home for as long as it is safe and possible, and to make plans for when it is no longer an option without all the frustration. No one can promise that nursing home living isn’t in our future. We need to talk about options without making promises that can’t be kept.