Living: the ultimate team sport

Be an advocate for your aging loved one.

Posted on November 14, 2011 Updated on March 3, 2012

If your loved one no longer has a voice in which to defend or advocate for herself, who better to do so than you?

In this post I will assume that your loved one, e.g., parent, grandparent, spouse, or sibling, lives in a long-term care (LTC) facility.  Oftentimes by the time our parent has entered a facility, we are so relieved that someone else has taken over the caregiving, we willingly take a back seat and let the professionals do their job.  By all means, reward yourself with the freedom that less active caregiving of your loved one has afforded you, but don’t leave your caregiving role behind.

I know it’s hard to hear what I’m about to say – especially since you finally turned over your parent’s caregiving to someone else – but I want to encourage you to NOT assume that the care being provided (or withheld) is in your loved one’s best interests.  It’s easy to have a perhaps unwarranted laid-back attitude because:

1. mom is being taken care of by trained professionals who wouldn’t be doing this job if they didn’t love it; and/or
2. mom is living in a ritzy/expensive place so it must be the best option for her; and/or
3. this place couldn’t possibly have any problems as witnessed by the waiting list we had to climb to get her accepted.

I wish all of the above points were reason enough to become somewhat removed from the picture but the truth of the matter is that none of the above have any bearing on the quality of care being provided to your mom.  Let’s take each point separately.

1. Without a doubt, there are caregivers and management staff that truly do love what they do and this attitude is demonstrated in the compassionate way in which they care for your loved one.  However, in 2007, studies showed that staff turnover rates ranged from 50 percent to well over 300 percent a year!  There’s a reason why caregiver turnover is so high.  This job is TOUGH and the pay is unconscionably low.  A 2004 U.S. Dept. of Health and Human Services report addresses the front line long-term care workforce challenges which have only increased in the past several years.  This report is worth your while to read.  Learning is power – right?
2. Champagne and chandelier facilities are just that – beautiful buildings on their face, but not necessarily representative of the care being provided.  Don’t get me wrong, I’m aware that stellar higher-end senior housing companies exit, but it’s important that we not be lulled into thinking that glitz equals great.   Sometimes what I call “generic” buildings oftentimes provide as good or better care.
3. The waiting lists that so frequently exist for LTC facilities – especially for dementia care – are representative of the demand for space that, as of 2011, is not adequate for the burgeoning influx of Baby Boomers needing care.  So a waiting list does not necessarily represent quality.

So here are some pointers for you that I hope encourage your continued involvement in your loved one’s care.

SPEAK UP.  You don’t have to be a squeaky wheel to get the grease.

• Be persistent yet respectful.
• Take the time to be a part of your loved one’s care meetings/conferences with staff to discern their reasons for the care being provided.
• Be present: in person if you live nearby or by phone if you are a long distance family caregiver.  Trust me, if the caregivers know that you care and are going to be an active family participant, you’ll get their attention, and so will your loved one.

OBSERVE.  When visiting your loved one, observe her behavior and demeanor; her cleanliness and her appearance.  How does it differ from visit to visit?  Is her room tidy, clean and uncluttered?  One way to observe staff members in action is to accompany your mom on facility outings.  Observe the staff’s interaction with the residents.  Do they speak respectfully to them?  Are they patient with them?  Do the residents enjoy their outings or do you get the impression that these outings are forced upon them?  All of these impressions are important towards discerning what goes on in your absence.

ADVOCACY RESOURCES.  Do your part in acquiring the tools needed to better understand the resident rights guaranteed by law that your loved one should be receiving as a long-term care facility resident.  Each state in this country has a LTC Ombudsman program.  Get acquainted with their mission of advocating on behalf of vulnerable adults and contact your local program to receive help in assuring optimal care for your loved one.