Tag Archives: nursing home

Have You Seen The Med List Lately?


The beauty of hindsight is that I can look back at my time caring for JHP,JR and start to see the forest and the trees. One issue we faced a couple times involved one little piece of paper. It’s one of those things many families might overlook just because they haven’t thought about it or because they assume staff handles it. Sadly, this extremely important piece of paperwork is not always managed as well as it should be.

When living in any kind of residential facility, your loved one will probably be sent to the nearest emergency room in the event of serious illness or injury. When the paramedics arrive, the nursing staff will hand off a patient information packet to be taken to the emergency room. Contained in this stack of papers is the current medications list. Sounds simple, right? Well….

Almost every time JHP, JR ended up in the hospital, I found myself standing next to a seasoned nurse trying to decipher the list of his medications. Unfortunately, and nearly tragically, his list was never an easy read. When there were notations, they were often vague. We couldn’t always tell which medications he was still taking. The nurses and I had to rely on what was written on the facility’s list or call my sister to find out. Even if you remember all but one medication, it can be problematic. For example, the hospital gave my father blood pressure medication because it was still listed. It took JHP,JR’s blood pressure to nearly bottoming out before they realized he didn’t need it. And guess what? He had either been taken off the med or it was reduced significantly, but his med list did not reflect this information accurately.

It’s as simple as that. Even if you know most of the medications by heart, miss one and it can be life-threatening.

I can’t stress enough how very important it is to have a current and legible list of medications. And when I say ‘legible,’ I mean easy for a layperson to read. If you aren’t able to put your hands on the meds list at the facility (which would be a red flag to me), then make sure you, or the person who will be there for your loved one, is informed about the medications and dosages your loved one takes, and why he/she takes them. Then, keep that information current in your own records. There has to be a well-maintained master list that anybody and everybody can understand.

As soon as you can, visit to the nurses’ station at your loved one’s residence to see his/her current med list.  Check it and recheck it. Then, clarify the information and confirm it. Check it monthly if you can. And check it again. If the staff doesn’t allow you to see the information, go to the supervisor, then to an administrator. It’s in everybody’s best interest the list is legible, current, and easy to understand. Consider keeping your own copy of the list so that you don’t have to rely on staff. Just do whatever you need to do to make sure you have access to a current list of medications and the dosages. I hope you never find out how scary it is to see what can happen when the wrong medications are given.

Lucy
Jerome’s Daughter

 

My First Encounter With Dementia: Daddy Pat (Part II)


…continued from My First Encounter With Dementia: Daddy Pat (Part I)

This installment is long overdue. It was challenging to write. I cried a lot, and I’ve finally given up on editing it. I want to note, however, the fact that my Uncle Sonny and Aunt Leta were by my grandparents’ sides the entire time. Mommy and Daddy Pat were not on their own. My sister was living in England at the time and she visited them every chance she could. She took the majority of the photos I’ve used in these postings. My cousins also visited Mommy and Daddy Pat regularly. They were loved by many.

Daddy Pat circa 1947

When Mommy Pat called to tell me she had to move Daddy Pat to a nursing home, it felt like a confession. She was making a tough decision, one nobody would be entirely happy with. She was also grappling with her own sense of guilt despite having done all she could to put off this final move. Add to that the fact she now had to deal with telling me, and you’ve got a challenging situation.

Mommy Pat knew me better than anybody. She knew I would be upset. Despite the fact we had always shared an open and honest relationship, there was a real sense that we were biting our tongues during this phone call. Neither one of us wanted to say anything that might make an already challenging situation more difficult. She wanted to help me through it just as much as I wanted to help her through it.

I clearly remember Mommy Pat saying, “Lucy, he’s not himself any more. The doctor said his brain isn’t working right. He has something called a degenerative brain disorder. He’s getting violent and you know that’s not him.” The sound she made after finishing that sentence, a sound like holding back a whimper, brought me to tears. My rocks, Mommy Pat and Daddy Pat, were at a crossroads. I had no idea what to expect.

Mommy Pat and Daddy Pat, circa 1984

It was so hard to see Daddy Pat in that nursing home.  A short time later, Mommy Pat joined him. What I remember most are my feelings about walking into that building, smelling the odors, and seeing people in wheelchairs lining the hallways. It was horrible. And my two favorite people in the whole world were living there.

My sweet grandfather seemed to fade away rather quickly. The already quiet man became nearly mute as he developed repetitive behaviors such as tying and re-tying his shoe laces and playing with his fingers. I remember one time sitting with him while he ate. He picked up the napkin and put it in his mouth. I didn’t know what to do. So, I said, “Daddy Pat, those don’t taste good. Ya’ wanna try some of this?” and motioned towards the food on his plate.

A glimpse of one of Daddy Pat's repetitive behaviors.

This is when I began noticing Mommy Pat’s slow decline. As Daddy Pat fell deeper into himself, Mommy Pat began repeating her stories. It was as if she was on a 10-minute loop. If I visited her for an hour, we would have the same basic conversation five times. I once told her that I would say something negative about myself just to hear her compliment me over and over again. She swatted me gently with her hand and laughed. “Silly girl.”

Daddy Pat was in really bad shape by now. I never felt like he recognized me, but Mommy Pat said he did. “He knows you and he sees your hair. You got that red hair from his brother, Roderick, ya’ know.” Thus was born my new greeting for Daddy Pat. No matter where he was, I would hang my hair over his head and whisper in his ear. “Daddy Pat!! It’s Lucy. You’re other favorite redhead!” It may have been my hair tickling his nose. It may have been the silliness of it that made him laugh and swat at my hair.

Mommy Pat died in late May, 1993. Sadly, I was living in California at the time and was unable to get back to Texas for her funeral. Looking back, I think I may have been able to make the trip but I was probably trying to avoid the pain of a funeral. I was naïve to think that avoidance would help me, because instead I developed the pain of regret. The day after her death, I went to the beach and felt sorry for myself. Angry with myself for moving to California instead of staying with them, I decided I would never again run in fear when someone I loved was sick. I had to make sure I never felt that kind of regret ever again.

I made sure to visit Daddy Pat as often as I could after Mommy Pat died. On one visit, I found him tied to his bed. Somebody had tied my grandfather to the bed! I tried untying him but I was shaking so hard, I couldn’t. So I went to the hallway and found the first person wearing scrubs.

“MY GRANDFATHER IS TIED TO HIS BED! UNTIE HIM NOW!”

“Well, he keeps trying to leave the building and walk to Ennis, as if he could,” one of the caregivers said. Harsh and condescending are the best words I can think of to describe how she spoke to me. Everything I felt about my grandfather aging, everything I felt about losing the rock of my life, everything came out in that hallway on that caregiver in that moment. It was ugly, and I’m not proud of my reaction. Her insensitivity towards what he was going through, towards the family, towards the entire situation was palpable. Tough day or not, a little sensitivity would have been nice.

The look in his eyes is burned into my memory.  When he was finally untied, he just looked at me. I said something like, “Hi Daddy Pat. It’s me. Lucy.” His stare became more intense. So, I climbed in his bed, put my hair in his face and said, “I know you know who I am, Daddy Pat.” He closed his eyes and sighed, then reached for my shoulder. I believe he knew it was me and that he was relieved.

The last time I saw Daddy Pat, I was too afraid to give an official goodbye. In my heart, I think I knew it would probably be my last time to see him. I guess I thought by saying goodbye to him that would somehow make him die sooner. I hugged him and told him I loved him.

After I got back to California, I couldn’t stop thinking about the regrets I had about not saying goodbye to Mommy Pat. So, I decided to make sure Daddy Pat knew how I felt about him. I made a tape for him. I recorded my devotion to my grandfather. I told him he was the best man I ever knew. I told him he saved my life. I told him I would never forget all those times we sneaked into the kitchen for late night treats of ice cream covered in Mommy Pat cookies. I said it all. Then, I sent the tape to a lifelong friend who had been working in hospice. Besides being my maid of honor and the best friend I’ve ever had, she was one of the most compassionate people I knew.

Mary took the tape, a portable tape player (it was the early 90s, mind you), and headphones to the nursing home. She put the headphones on Daddy Pat and hit play. He woke up, then he fell asleep. Mary rewound the tape and started it over saying, “Stay awake Daddy Pat. Lucy has something to say to you.” She stayed with him until she was certain he heard the entire thing. How blessed I am to still call this woman one of my best friends.

Eventually, he heard the whole thing.

Daddy Pat died in late 1993, about a month after hearing my tape.

Lucy
Mommy Pat and Daddy Pat’s Granddaughter