Tag Archives: alzheimers

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

 

Jenni Inspired Me To Come Back


First of all, thank you to all of those folks who wrote me asking where I had gone and when I’d be back. It’s nice to know that you are interested in what I have to say about my experiences.

Secondly, I have a few reasons for taking this very long break from writing My Father Doesn’t Know Me Anymore. Most importantly, and the reason that most deeply affected me, is the fact that I felt a need to discuss certain issues that I did not feel safe discussing here. I censored myself for fear of upsetting anyone. And, I may or may not bring up those issues at a later date. I may disguise them as topics or I may relate my personal experiences with them. I don’t know how I will present them, but I will present them. For now, I’m just going to work on writing about those things that people have asked me to address.

I do owe you an update however. My father, JHP,JR, passed away Sept. 20, 2012. I’ll go into that long story in another posting. My hope is that I can have this blog up and running for the first anniversary of his death. I’d like to think he’d be proud of me for doing so, but he would probably be really ticked off that I stopped for so long.

As always, if you have any topics you want me to explore, please feel free to drop me a line.  I’m working with hindsight now and it’s amazing how similar the view.

Mother’s Day: Damned If Ya’ Do, Damned If Ya’ Don’t


Whether it’s a Hallmark holiday or a religious holiday, I have yet to meet a family who’s facing a loved one’s dementia diagnosis that doesn’t have some reservations about holiday celebrations. In my situation, the big religious and national holidays aren’t as challenging as they once were because JHP, JR no longer remembers he hated them. Nowadays, I really dread the Hallmark holidays. Mother’s Day may be the worst one of all.

I’m confident there are a number of other caregivers out there debating how to handle Mother’s Day with their loved ones this year. The reality is holidays such as this often remind dementia patients that their parents, or spouses, are dead. Whether it comes back to them because the day’s celebrations serve as reminders of these long-gone loved ones or because they just happen to remember these people died, this Hallmark holiday can be surprisingly challenging.

What’s a family to do?

I don’t know. I’m still trying to figure that out myself.

JHP, JR and his mother, 1923

My initial thought was to visit JHP, JR today so the girls and I can share some cake or chocolates with him. I love the thought of bringing him in on my special day. Then, I stop and think for a minute and I realize there’s a very good chance my good intentions could add a few pavers to the road to hell. Wanting to share my special day with my father may serve to make him miserable.

I can hear it now, “It’s Mother’s Day? I need to call mom.” Or “Did you get mommy something?” Then, I must decide to either carry on and say, “Oh yes!!” or “Well, Dad, they are dead.” Okay. I wouldn’t be quite that blunt. But still, it sounds like a no-brainer, doesn’t it? Well, it’s not because the problem with JHP, JR. and other dementia patients is that when we say “Yes I did,” they often carry the conversation further by asking more questions. In my situation, if I answer with a fib, JHP, JR will, in all likelihood, move to the next logical group of questions: “Where is she?” Why hasn’t she visited me?”

I have no doubt at least a few of us caregivers are holding up in our homes trying to decide whether or not to visit our parents today. If it wasn’t so sad, it would be a laughable damned-if-I-do-damned-if-I-don’t situation.

JHP, JR and Mom, circa 1947

The question remains. What do we do? What do family members do on days such as Mother’s Day and Father’s Day? Do we visit and hope for the best? Do we avoid visiting and convince ourselves that all is well? In all likelihood, someone is sure to bring our loved ones into the reality of this Hallmark holiday. In all likelihood, especially if they live in a facility such as a nursing home, our parents will figure out the significance of the day.

God forbid caregivers think, “Oh. Wait. When I wish Mrs. Jones a happy Mother’s Day, that might remind her and all the people around her that it’s Mother’s Day…which might remind her and all those other people around her that they forgot to do something for their mothers….which might cause her and all those other people around her to ask about their mothers…which might lead me to being in a situation where I can either lie or break the news that their parents died a few decades ago…which may lead to an entire group of patients realizing their parents are dead…which will make them all sad…which will make them very sad.

I know that sounds uber-dramatic, and maybe it is. Again, it’s almost laughable. For many family caregivers, however, it’s the sad reality they face every single holiday. Don’t get me wrong,  I appreciate facilities wanting to help their charges celebrate special days. I get it. I really do. Even the best facilities are also in the damned-if-they-do-damned-if-they-don’t situation because if they don’t acknowledge the day some family member will moan and groan because their parents aren’t being honored. It’s enough to make me want to scream-laugh.

I won’t lie and say there isn’t a part of me that doesn’t want to completely shelter JHP, JR and every other dementia patient from this day. The thought of Dad and all those other residents remembering again, for the first time, that their parents are dead, breaks my heart. But, again, what do you do? I still have no idea.

I know I’m not the only one whose role today will probably be that of the comforting child who either lies my butt off or explains the when’s and where’s, the how’s and why’s of people long gone. I can guarantee I will do everything I can not to mention Mother’s Day because, if there’s a chance we can avoid this sadness, I want that chance! And, like so many other family members, that may mean not visiting at all. Honestly, I’m still not 100 percent certain what I will do today. As selfish as that sounds, it’s the guilt-ridden truth.

Wish me luck!

Jerome's daughter and granddaughters, 2004

…and good luck to you on your journey,

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

Holy Feedback, Batman!


After yesterday’s blog post I received a number of emails, along with a few online comments, relating similar situations in families all over the world. I don’t know what surprises me more, the number of issues our parents have or the number of professionals who have issues with families’ decisions. And to think, I was sitting here yesterday afraid of hitting the “publish” button because readers might judge me.

(Insert sigh of relief here)

What this tells me is that none of us are alone, even if it feels that way. Apparently, such struggles are part and parcel for end-of-life care whether it is related to dementia, cancer, or another disease. This feedback further illustrates why I tend to get so frustrated with “professionals.” I can’t help but wonder how much of this disapproval falls under the category of CTA (covering their a$$e$) in the hopes of avoiding a lawsuit later. That sounds cynical because, well, maybe I am. On the other hand, my father might say I’m realistic about what happens when we live in a litigious society.

I honestly believe it comes down to each family collecting professional opinions and expert information. Then, all of that can be paired up with the loved one’s wishes and what the family can handle financially, emotionally, and logistically. What is right for your family may not be right for another family. And what works for your family may be contrary to professional opinions.

There is something to be said for quality of life, too. This is such an important concept, but each family and each profession may define that concept differently. I believe my father’s definition of quality of life would include having his faculties, but he made choices that prevented that from happening. So, what’s he left with? He’s left with being able to go out on his own terms. Chocolate and whiskey are part of those terms.

Professionals don’t have to live with the patients. Professionals aren’t the ones hoping to have a decent relationship with an ever-changing personality. While we pay them for their opinions, that doesn’t mean we must agree.

Besides feeling judged by professionals, it’s easy for you to judge yourself, question your decisions, and wonder “what if.” You are the one who has to look yourself in the mirror every morning. You are the one who will live with regret or satisfaction regarding how you handle the remaining time you have with your loved one. It’s your loved one. It’s you.

I seriously doubt I will ever regret sitting with JHP, JR while he has a night-cap and  listens to Big Band music as his granddaughters dance around his room with the dog. His smile, his calm, and the look on his face when he decides if he likes the beer I brought him tell me he’s okay with his life in that moment. These nights will forever remain with me as good memories, and as a sign that his alcoholism no longer controls my life. Maybe the memories created through forced sobriety would be nice, too. I guess I’ll never know. And I’m okay with that.

Good luck to you on your journey.

Lucy
Jerome’s Daughter

Self Care: My Decompression Chambers


As I wade my way through JHP, JR’s new life, I have slowly begun to realize the importance of self-care. One of the ways I take care of myself is to have a variety of what I call decompression chambers where I can sort through my feelings, or just forget about them for a few moments, particularly after challenging visits with my father.  Being able to process these feelings while also learning how to fill one’s own cup are necessary skills for anyone. Let’s face it, unless there is somebody to call or talk to right away, caregivers are often on their own emotionally.

I’ve also learned that processing my reactions to what’s going on with JHP, JR can take time. The fear, the feelings of helplessness, not knowing what to do with these new feelings about our new relationship can be overwhelming. It’s important to find that balance between reaching out and reaching within. Not only must caregivers be careful about over-utilizing friends’ ears and shoulders, we must also strengthen our resolve to honor ourselves and our situations while taking good care of our bodies and minds.  Since I’m more than just a daughter, I’m also a mother and a friend, I have to find that balance. Dad is not the only person who counts on me to be strong and effective. In fact, it’s easy for me to forget that I, too, count on myself to take the necessary precautions. And I am fairly certain I’m not so unique as to be the only caregiver who does this.

One of my most effective tools for decompressing is walking outside. These days, one of my favorite decompression chambers is a local park that includes a small lake and lots of trees. Not only does it have a paved walk that wraps around the perimeter of the lake, there is also a nature trail that takes walkers through loads of mature trees and leads to a simple meditation labyrinth.

Whether I walk at the park or in my neighborhood, I always have my cheap little MP3 player in my pocket. This gives me the option of either listening to nature mixed with car sounds or listening to music. When I listen to music, I have a tendency to think of it as a soundtrack to the sites I see as I either try to forget about my emotions or work them out in my head. After a couple of miles, I usually pull out my camera and take pictures while I cool down. This simple act serves to literally shift my focus away from my fears and concerns about dad and force a different perspective, if even for just 20 minutes.

Then there’s drumming. I’ve been learning how to play the djembe for over three years. Besides attending Saturday morning classes sponsored by Drums Not Guns, I’ve also taken classes taught by Master Drummers from West Africa, and other talented musicians in the DFW area.

What I love about hand drumming is that my teachers use the rote method of instruction, meaning there’s no sheet music. These teachers use vocalizations to signify the different ways of hitting the drums to make the right sounds. Since I haven’t read music for many years, this works well for me. Then, there’s this one little aspect that makes drumming such a great tool for me. When I stop thinking about whether or not I sound stupid, if I focus on technique and allow myself to feel the rhythm I’m creating, then I get lost in it…if just for a few minutes.

Photo by Billy Keith Bucher

Finally, there is dance. Yes. I dance. I don’t dance in public, but I dance nearly every day. Whether I’m dancing with my kids around the house or working out, it puts me in a happy place that makes me smile, laugh, and sometimes I even sing. Mind you, I’m not much a dancer, but I’m not a horrible one either. Dancing serves as both exercise and a decompression chamber/mood lifter. Maybe one of these days I’ll set aside my self-consciousness and dance in front of other people like I did when I was younger. For now, it just helps me let go.

And I think that’s part of it all. Letting go helps. It’s easy to get stuck in that place where I think I have to do it all. I have to put myself into caring for others so that I can continue caring for dad, but that’s bogus. It’s okay to be self-serving too. Because ultimately, who do I, you, rely on the most to handle all of this emotional messiness? I have to rely on myself to get to the place to find the love and support both inside myself and outside myself. It’s a tricky gig that I’ll keep muddling my way through even after JHP, JR dies. For now, I think it’s best just to go easy on ourselves and appreciate/honor/respect not only what our loved ones are going through, but also what we as caregivers are going through.

What it comes down to is simple preventative self-care. De-stressing in healthy ways that really do brighten your day can make all the difference in your effectiveness, and it may prevent caregiver burn-out, or at least more frequent feelings of caregiver burn-out.

Back to journey,

Lucy
Jerome’s Daughter


Decompressing In The Park


JHP, JR. has begun another downward turn from speaking clearly and remembering things to struggling just to find a simple word. Worst of all, he is fully aware of his memory lapses. And while this isn’t our first time down this road, it never gets easier for either one of us. When we have days like this, I have to decompress. Tuesday, I went to a local park, walked, took pictures and thought about our conversation.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~

“I need you to contact…..”

He couldn’t think of the person’s name. I offered to list names until we found the right one, but, as soon as I made the suggestion, I regretted it. We were about to go through the list of the dead unless I could skip those names. Unfortunately, those are usually the people he’s trying to get in touch with. Of course, I assumed he was talking about mom, so I decided to get it over with, like pulling off a band-aid.

“Do you mean Mom?”

“No! I know who Mom is! I don’t mean Mom!”

Whose mom? My mom or his mom? I didn’t know who he meant and was not about to ask for clarification. Even though he was yelling at me,  I was relieved to have dodged that bullet.

It’s hard seeing him like this, knowing that there’s a very good chance he’s about to figure out his wife, his parents, his aunts, his son, and his daughter are dead. Watching him struggle to say the right words, after years of always knowing exactly which word to use, is heartbreaking. It never gets easier, no matter how many times this happens.



I began rattling off other names, any names I could think of that didn’t come pre-charged with emotions. I prayed he wouldn’t ask for details about each person. No matter what name I said, he responded with an emphatic

“No!”

Then, he asked,

Am I married?

Oh how I hate that question. I never know how to answer it. Do I explain? Do I just say no? He was waiting for me to answer. I panicked and stumbled over my words….again.

“You once were, but you’re not anymore. I mean, you always said you still felt married, but you really…well…what I mean is…”


He asked again.

“Am I married?”

His tone and the look on his face told me he just wanted a straight answer.

I’ve never been a good liar.

“No.”

“But I was?”

“Yes. You were.”

“What happened to her? Is she here?”

“No, Dad. She’s not.”

“Is she mad at me? I haven’t talked to her in weeks.”

“No, Dad. She’s not mad at you.”


“Do I have any children?”

“Yes, and I’m one of them.”

“Where are the others?”

“They are at their homes with their families.”

I needed to change the subject quickly. Luckily, Dad took a breather to rub his eyes. He was beginning to tear up. I asked him if he was ready for a nap because,

“I know you’re tired and frustrated today. I’m so sorry you’re having a rough day. I can see it in your face, Dad.”

He stopped. He closed his eyes. His head and shoulders fell slightly forward.

“She’s dead.”

“Yes, Dad. She’s dead.”


He reached for my hand, held it, and brought it up to his cheek. Then, he pulled me down to his chair for a hug. Still holding my hand, he put his head on my shoulder and he cried.

“Thank you.”

I was crying, too.

“I’m sorry, Dad. I’m really sorry.”

“Tell me your name again.”

“Dad, I’m your daughter Lucy.”