Advocating for Your Loved Ones: Caregivers Speak Up!

Advocating for a loved one can make a huge difference in their comfort and care. Sometimes you learn the hard way that your loved one could be suffering unnecessarily. It happened to us. We got the call that nobody wants. Our 95 year old uncle developed pneumonia and may not make it through the weekend.

My husband and I flew to the Midwest the next day to visit him in his nursing home. It was a difficult visit, seeing our beloved uncle so close to death. Equally upsetting was realizing that he was alone in this experience. Our uncle has no family nearby.  Although he was being cared for by loving nurses and aides, it became quickly evident to me that he would be significantly more comfortable if he had someone advocating for him.

There’s room for improvement.

There were several aspects of his care I felt could be improved. Chances are, many of us now have, or had in the past, loved ones in hospitals, nursing homes and long-term care facilities who could be more comfortable, and possibly healthier.

Why do caregivers need to point out health issues?

His breathing was quite labored, with a loud rattling sound with every breath.  I asked the nurse if he would benefit from oxygen, and she replied “probably” and then hooked him to the tank at his bedside. Why didn’t the nurses give our uncle oxygen earlier? How long would he have struggled with his breathing if we weren’t there? How much had he struggled before we got there?

Why did the staff wait to so long to provide comfort care?

The pneumonia was forcing our uncle to breathe through his mouth, a situation that leaves the mouth painfully dry.  When I asked the nurses if they could moisten his mouth, they told me they check on him every 2 hours.  When caring for my son Zach, who also suffered from a very dry mouth at the end of his life, I moistened his mouth several times/hour.

Why did the staff make it so hard for our uncle to get attention and help?

The nursing staff placed a call button on my uncle’s bed, telling him to ring when he needed something.  When we first got there, it was obvious to us that he did not have the strength to move his hands to locate and press the button.  The simple call button that works for many other patients was useless for him.

Lessons learned.

Advocating for a loved one (or for yourself) is critical for getting the best care possible.

As a caregiver, it is important to be with the patient as much as possible. For short hospital stays, sleeping in the room on a cot or recliner can help ensure the patient is getting his/her needs met. However, for longer stays, in hospitals and long term care facilities, it is unrealistic to be there 24/7, so you’ll need a different approach.

Before moving a loved one to a facility, do your research to determine if the facility has a history of complaints and other issues. There are many websites that rate facilities – see a list here.

Recommendations for loved ones of long term care patients.

It’s important to be as involved as you can, to make sure your loved one is receiving proper care. I recommend:

• Visit as often as you can, unannounced, and at different times of the day and on different days of the week.
• If you notice a lapse in care, speak up. Speak to the nurse in charge to make sure  an employee with the power to make changes hears your concerns.
• When voicing your concerns, be specific and polite.
• Establish relationships will all of the nursing staff so they will hopefully be more open to your concerns. Treat the staff the same as you hope others treat you.
• If staff ignores your suggested changes to improve the patient’s condition and/or comfort level, consider moving him/her to another facility.

For more information on nursing home safety issues, read this blog post.