Being told that your loved one needs “24-hour care” can be daunting, especially if it hasn’t come up before.
What the heck does that mean?
Will my loved one (or I/we) have to move?
Will we have to get some special equipment or services?
How much are we going to have to fork over for “24-hour care?”
If a hospital social worker or doctor told you this while you braced for your loved one’s last hospital discharge or it came up during your caree’s last visit with their primary care provider, you might have a lot of questions.
THE IMPORTANT THING TO DO IS NOT FREAK OUT.
Save yourself a knee-jerk reaction.
Take a deep breath.
Here’s the thing: Most people who have been caring for a loved one fail to realize that they have already been providing this, in some form or fashion, to their loved one.
24-hour care is not a facility.
24-hour care means a person has someone close-by and/or the ability to monitor them and respond quickly in case assistance is needed. It is simply an altered level of SUPERVISION. (Disclaimer: Your funding source, ahem: Medicaid, long term care insurance, may have a different idea of what 24-hour care means.)
24-hour care is something you create for a person, whether by surrounding them with the support(s) they need to stay where they are, or by moving them to a place where they can have that level of supervision.
When healthcare and social service providers and other “helpful” people tell you your loved one needs “24-hour care,” they are often making this claim out of complete ignorance about your family’s UNIQUE and COMPLEX SITUATION. They are unaware of what is truly required to ensure the health, safety, *and* happiness* of a person with special health care needs or chronic conditions, or someone who is at the end of their life. Please remember that you are the expert on your loved one.
Even when my grandma lived alone, she was receiving “24-hour care.” Certainly, I lived 15-20 minutes away. However, I could see her at all times on our Nest camera. She had Medical Alert, along with at least 3-4 people I could call on in an emergency.
When we moved into a home together, she was receiving yet another form of 24-hour care.
Unless your loved one’s care is being subsidized entirely by public benefits or private long term care insurance, YOU (your circle of care, that is) CREATE 24-HOUR CARE FOR YOUR LOVED ONE.
So, don’t let any ignorant comments from well-meaning but poorly educated professionals deter you from the path you are currently on if this describes your situation.
If it doesn’t, it sounds like there are some conversations you need to have and ducks you need to get in a row.
A couple more considerations about “24-hour care”
- 24-Hour care does not mean a person can’t be independent and make decisions.
A person’s need for increased supervision or on-call assistance does not diminish their right to independence. This independence normally means they can still make sound decisions (and trust me, if they are able to do that, you will know). These decisions may be risky, and that’s okay. They, like everyone else, must deal with the consequences, for better or for worse. Anyone who can make a choice also deserves the dignity of risk.
It is our responsibility, as their loved ones and caregivers, to support them to make those decisions for as long as they can, and then act in their best interest once they are no longer able.
- No single person or provider should be covering all 24 hours.
If your loved one is in a facility or receives the majority of their support from someone other than yourself, your presence and involvement is still required to ensure that their 24 hours are not only healthy and safe, but involve opportunities for human interaction, joy and beauty.
If your loved one is at home or you share a home, the burden of all 24 hours, day in and day out, should never fall completely on you. That may require some effort on your part, but it is so worth it!
My final comment on 24-hour care.
We all receive 24-hour care from the Powers that Be Upstairs. If you have faith and stay positive, trust that the universe will provide and everything will work out for the best.