Tag Archives: parents

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

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.”


JHP, JR’s Blog Blessing


If it’s not already apparent that the relationship between my father and me is very different than it was in the past, this blog post offers another bit of evidence. One of the changes we’ve made over the years is reflected in our ever-changing conversational styles.

When I was a younger, my father often told me I talked too much. As I look back, I realize I chattered because I didn’t know what else to do. I was so intimidated by him that I would talk about anything that came to mind. Unless we were in Mass, sitting in silence with him was very uncomfortable for me. Things changed as I got older, moving from saying whatever I felt like saying, because he seemed to get upset at me regardless, to rarely speaking while also avoiding being around him. There were topics I knew would upset him, but then again there were many times I’d speak and his reaction would completely catch me off-guard. I finally got to the point where I tried to avoid any conversations because the payoff wasn’t worth the stress. Absence was my friend during those days.

Thankfully, this is no longer a big issue between us. Dad is a bit more predictable than he used to be, or maybe I’ve finally figured out a few things. It’s probably a combination of both. When he gets mad these days it’s because he’s either been disregarded, told what to do, or interrupted. When he has the mad/mean reaction, I either say “OK,” apologize, and/or gently tell him it’s okay to be nice to me. We no longer discuss anything potentially controversial like politics or religion, and now that all the “you can’t drive any more,” “you need full-time care” and “you have to move to a place where they can take care of you” conversations are done, we really don’t talk about anything that could lead to a negative reaction. He just doesn’t have the same extreme reactions he used to. (knock on wood)

Despite this new way of ours I was a bit anxious when I visited him on Friday because I knew I needed to tell him about this blog, what I’m writing, and why I’m doing it. I wanted to be honest with him because this isn’t just my story, it’s his, too, and it was important to tell him his life has become an open book. Granted, I had to consider shutting down the whole thing if  he didn’t want me talking about him anymore, or alter it in a way that seemed fair. I was ready, sort of.

What follows is our conversation. Try to imagine each of my words being followed by a comma. That, is, how, I, speak, to, him, so, he, can, understand, every, single, word. His responses tend to be a bit slow, as well. But, I gotta say, I think he still had a little of the superhuman in him from his head-bashing. Most importantly, he was interested in what I had to say, and he was very enthusiastic about the blog.

“So, dad. I’ve been writing about you…us.”
“Really? When did you start that?”
“Well, I’ve been doing it for a while, but now people know it and are reading our story.”
“Really?”
“Yes.”
“How many people?”
“Well, one day close to 5,000 people read my story about Daddy Pat and what happened when he started having trouble thinking clearly. Some of those people also read about you.”
“5,000 people read about Daddy Pat?”
“Yes.”
“Dammit.”
“But they read about you, too.”
“Oh. Okay. What are you writing?”
“I’m telling people about what you’ve been going through since your strokes and about our relationship…how it’s changed.”
“OH?”
“Well, yes. I’ve been honest. I’ve told them how we used to pretty much hate each other and now we actually get along.”
“That we do.”
“So, I’m being very honest about private stuff. Is that okay?”
“Truth?”
“Yes. Please.”
“No. Are you telling the truth?”
“Yes. I am. And it’s not always pretty, in fact there will be times the truth will be very ugly. Neither of us look good.”
“Good. I’m glad.”
“You’re glad about what?”
“I’m glad you’re telling the truth.”
“Are you sure, Dad? Some of it is….”
“I heard you. Yes. You can tell people about us. Will it help?”
“I hope so. Seriously, though. If you are uncomfortable with this, you have to tell me.”
“I don’t have to tell you anything! I said you can do it. You can tell people about this.”

The conversation continued after I apologized for “babying” him. We talked about what I’ve already written, about the pictures I’ve posted, and the fact that I’ve been writing every single day. “Oh…now THAT is GOOD.” The only thing he took issue with was the name of the blog. “I don’t know your name, but I know you are important,” he said.

So, with JHP, JR’s blessing, I offer you this, his first official “My Father Doesn’t Know My Name But He Knows I’m Important” video. We are doing one of his favorite things, sitting outside and basking in the sun. There’s a helluva breeze as Dad enjoys a bit of candy and watches Ishmael run around the courtyard. You may notice I sound a little choked up. The reason for that is, well, I was. It’s really nice finally being able to sit in comfortable silence with my father.

It’s Easter…Somewhere


There was a time, before we were all grown and out of the house, when religious holidays were important to my immediate family. It seems like a lifetime ago. Mom was alive, we wore special clothes, went to Mass, had big family meals, and celebrated the holidays like any good Catholic family should.

I can look back at old family photos and see pictures of my older siblings dressed up for Mass, mom wearing a dress and high heels, dad wearing vests and ties, and everybody smiling. These pictures date back to the early 1950s and continue through the early 1970s. There are a few pictures after 1974, but they are different. Things changed so much after she died.

Mom and JHP,JR circa 1970-ish

After mom passed away, my older sisters worked hard to carry on and create happy holiday memories. I think, even as young as they were, they knew that I didn’t really have good memories of the holidays, or that the ones I had wouldn’t last. I think they also wanted to work through their own sadness and give our family what we all deserved…happy holidays. To their credit, they tried very hard to give each of us happy memories for our family’s emotional scrapbook. Unfortunately, they were facing one of the greatest challenges, a Scrooge of sorts, JHP, JR.

While my memories of those earlier holidays are, at the very most, vague, I sometimes wish my memories of the JHP,JR-only holidays were nonexistent. It’s my belief that Dad struggled with seeing his daughters’ attempts at creating happy holiday memories for us all. I believe he often overruled and decided we would do the holidays differently, thereby making it less work for my sisters. So, we often spent holiday meals at the local Chinese restaurant, and I think we celebrated a few holidays at my sister’s apartment.

When I look back, I am aware that I adopted a holiday attitude similar to my father’s, because no matter how hard my sisters tried, Dad was a, well frankly, a baby about it all. He made the holidays so tense and uncomfortable that I don’t know how we all managed. I also realize I slowly gained a resentful understanding of Dad’s issues around the holidays. He was furious that he did not have his wife there to celebrate with him. He felt incapable of creating family holidays as well as she did. He didn’t want my sisters to carry the burden, but he really wanted to hold up in a cocoon and hibernate through the holidays. As I’ve gotten older, it all makes a weird kind of dysfunctional sense to me.

Now that dementia has changed him so much, I’ve taken a few risks around holidays that would have otherwise sent him into an emotional tirade or a drinking binge. First of all, the facility where he lives celebrates most of the significant Christian holidays a week or two before the actual dates. This is helpful because families can be there, but then when the real date comes along they can be elsewhere, without nearly as much guilt.

Thanksgiving, 2010 wasn’t bad at all. In fact, I was very nervous about attending the celebration where dad lives because I was fairly certain he would act as he had in the past. I was wrong. There was nothing to it. The girls and I arrived a bit late, but we managed to sit with him and eat. My youngest daughter actually got a plate full of food and when she set it down at our table, one of the residents took it. We laughed and she got another plate. After the meal, we went with Dad to his room and the girls did their usual shtick, playing on his walker, playing with the dog and dancing for grandpa.

JHP, JR listening to a middle school orchestra perform holiday music

The facility’s Christmas season was even more worrisome for me. They brought out the reminders of Christmas shortly after Thanksgiving. Every time I walked into the building, I feared finding Dad sitting in his chair with that old holiday scowl on his face. It never happened. I was so surprised by his lack of reaction, that I decided to risk it and get some decorations for his room. And guess what! He was thrilled!!

I realized I was finding more reasons to appreciate the changes in his brain’s wiring. As awful as that sounds, it’s the God’s honest truth. JHP, JR. was on the road to finally having good holidays all because he couldn’t remember that he hated the holidays or why. Ultimately this also meant my daughters might grow up with happy holiday memories that included JHP, JR! Who knew?

Dad's dog, Ishmael, during our Christmas celebration with JHP, JR

So, today is Easter Sunday, 2011. I’m at home by myself. My kids are at their father’s house. Dad is at his place. The girls and I missed the early Easter celebration because we got late notice of the event. And today, I’m feeling a bit JHP, Jr’ish myself. There are no baskets of chocolate sitting in my living room. There isn’t any green plastic grass waiting for the vacuum. I will, however, go to the Lynn’s house, my other “adopted” family, for a great meal and spend a wonderful afternoon with them. I’ll laugh. I’ll eat. I’ll get leftovers and I’ll take those to my dad’s place before the girls come home.

Dad and I will eat pie and talk. We won’t say much and I’m not even sure if I’ll mention that it’s Easter Sunday. It’ll still be a nice memory for me and it will be a good feeling for him. This is good enough, because I’m beginning to realize no matter your age, no matter who you’re with, it’s really all about the feeling. That’s what imprints our memories. Those imprints then lead us to recalling the finer details of the day. Those feelings are what Dad and I can both hang on to for now.

So, no matter what holidays you celebrate, I hope you are finding some happiness in these moments with your loved ones whether or not they know who you are or the significance of the day.

Lucy
Jerome’s Daugher