Advocating: Learning to Speak Up
I’m not the type of person who makes a scene. I don’t try to draw attention to myself in public. I don’t typically send food back at a restaurant. I don’t argue with cashiers or call on “the management” to avenge the grievous wrongs that have been done to me. I generally feel like people are people. Mistakes are made. Accidents happen. Sometimes it’s me who’s wrong. I’m of the “let it roll” philosophy, and often give my fellow flawed humans the benefit of the doubt. So, if that’s the kind of person you are, too, I get it.
It's our turn to look after Dad
Being typecast as such, it can be hard to stand up when it’s necessary. It is, however, necessary sometimes. When it came to caring for our Dad, I was kind of the “fixer.” I handled the insurance companies. I handled doctors and bills. I signed things. I had a big hand in decision making. I stepped up. I had to. We, as a family, had to. Daddy stood up for us growing up, and it was our turn.
We were now responsible for his care. He made sure we had a home and food and everything we needed. The least we could do was return the favor. We were painted into a corner with our jobs and insurance pitfalls and Daddy’s lack of planning. We had to make some difficult decisions about him living outside the home. One thing was certain, though. We had to ensure his relative comfort, even when that meant raising our voices.
When it comes to care, watch for red flags
We were generally lucky with Daddy’s nursing facility placements in the long run. In the beginning, though, we did muddle through some tough situations.
At times, we felt as if Daddy wasn’t being attended to properly. Part of it was him not settling in easily and being difficult, part of it was understaffing, and part of it was simply neglect. That’s not an easy thing to say. That’s not an easy thing to call a facility on. It’s not easy, but it’s necessary.
I actually wish we had spoken up more at times now. There were times that he didn’t appear clean. More specifically, there were times we questioned the frequency and sanitary conditions of his bathroom routine. Big red flag, guys. Call that one out. This is not a “let it go” moment.
There were also times that it seemed he wasn’t being monitored very much. We even had to question his medication, as he often seemed to be in zombie-like state. Those are not things you should ignore. You don’t have to. If possible, you can choose a new facility. If not, demand what you and your family need.
Finding the right fit for Dad
Luckily, his stay in the aforementioned place was brief. What came next was drastic. He thrived in placements that were absolutely immaculate in their practices. Sometimes I think that maybe you don’t know how great a placement can be until you find “the one.”
There are places and people out there who can put your mind at ease about the care of your parent. There are facilities that have enough qualified and caring staff members to perform their jobs well.
We could have not asked for more in Daddy’s last placement. The nurses were friendly and attentive. He was clean and fed and content. That last word was a big one. CONTENT. We didn’t have to worry about his treatment there. Everyone was very welcoming. The place was very accommodating to family members, with areas specifically designed to allow for pleasant visits. He laughed with us. That was big, and that told us what we needed to know.
If something doesn’t feel right, question it
Don’t be afraid to use your voice when your parents have lost theirs. You have to advocate for humane treatment and sanitary conditions. There are no ifs, ands, or buts about it.
That common adage that goes, “If you see something, say something” applies to medical care as well. If something is happening that doesn’t feel right, you have the right to speak up. If you feel as if your parent is being mistreated or abused, report it. If you aren’t satisfied with the patient’s cleanliness, report it. If you suspect overmedication, report it. If something doesn’t feel right, question it.
It's about advocating for our loved ones
You kind of have to become “that guy” even if it’s not who you usually are. This isn’t a petty 10% coupon that rang up wrong kind of moment. This is the life of someone you love. You can be diplomatic and blatantly direct at the same time. It’s not easy, but it can be done. I promise.
Do you find legal and financial jargon in dementia care confusing?