Tag Archives: family

Whiskey? Sure, Why Not?


Once we are out of our parents’ homes we can, for the most part, set aside our feelings about some of our parents’ personal issues. When the time comes for adult children to return to their parents’ sides in order to help them maneuver their way through dementia diagnoses,  they often find themselves facing more than just health care concerns. Many adult children have to face, head on, their judgments about their parents’ lifestyles. Childhood issues can come full force into adult children’s faces. And deal with them we must.

The following post may be a bit controversial. I know my stomach churns a little at the thought of being judged for what I’m about to write, but a friend said something to me that made me realize the point is not how people feel about my family’s choice. The point is to share my story and hopefully help others realize they are not alone. So, here I go.

JHP, JR and me, circa 1979(ish)

For as long as I can remember, my father has been an alcoholic. It’s colored my entire family’s life. It’s stained our childhood memories and caused a great deal of pain. So, in the beginning of all this JHP, JR dementia fun, I had to stare down the fact that I had (and probably still have) serious issues surrounding my father’s alcoholism. I probably  would have benefited from hiring a personal valet for all my baggage I carried about this one issue. And, oh, I would have done anything to have a sober father. Maybe I could have forced him to become one, against his will. My sister and I thought long and hard about making him sober. In the end, we chose to let him have his booze.

This wasn’t an easy decision.

See, after watching dad go through DT’s the last time he was in the hospital, then dealing with his withdrawal-driven tirades about wanting whiskey, we gave up on the idea of ever having a recovering alcoholic for a father, because even in his weakened state Dad could intimidate the hell out of just about anybody. I went through the usual frustrations, blame, resentment and sheer hatred. I even utilized avoidance tactics to put off enabling his drinking. Most often, they helped in the moment, but not for much longer than a moment.

I could have stopped buying his whiskey for him. I could have said, “No Dad! I won’t support your continued abuse of alcohol.” And maybe I did a couple of times. I could have poured out every bottle in his house. Did I consider it? Oh hell yes! Did I resent being in that position? Double hell yes. I think I can speak for my sister when I say she was as frustrated by it all as I was.  Did I follow through and stop buying, providing, crying? No. I kept buying his booze for him and I even taught caregivers how to make his drinks. Does that make me an enabler? Maybe. Does that make him any more of an alcoholic than he was before? Not likely. Does allowing an 89-year-old alcoholic to drink make me a bad person, or a bad daughter? No. I don’t think it does. And it’s taken me a couple of years to finally allow myself to be okay with his continued drinking.

Mind you, his drinking is monitored now. And sometimes he even forgets about booze, but it’s never permanent. In fact, I very well may be a trigger for his desire to drink. I don’t know. There’s a very good chance he associates me with liquor.

Now, coming to this decision has taken a great deal of time, effort, tears, conversations and a few visits with Al Anon. And, maybe, if JHP, JR. hadn’t lost everything else I would feel differently.

Let’s review:

  • The man who did the NY Times crossword puzzle in pen every morning, can no longer think of simple synonyms for everyday words.
  • The man who used to read a couple of books each week can no longer read because he can’t see well enough, and even if he could see he can’t comprehend the words he’s reading.
  • The man who used to play golf at least 5 days a week, can no longer remember how to play golf or walk well enough to do so.
  • The man who once argued and won in front of the Texas Supreme Court more than any attorney in the state can’t come up with words to make an argument.

He has no real friends. He has paid staff at the facility. He has his dog. He can’t drive. He can barely see. He doesn’t remember his own life. People tell him when to get up, when to eat, when to bathe. He can’t focus on a storyline, so he can’t even watch TV. He doesn’t even know how to work a TV any more. He has to rely on others to get him where he needs to go, even if it’s just down the hallway to the dining room. He can barely get himself to the bathroom without falling, and that’s when he’s stone cold sober.

If he wants whiskey or chocolate, I’ll give it to him. Hell, I’ll soak the candy bar in whiskey if that’s what he wants.

Lucy
Jerome’s Daughter/Bartender

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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.

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


Some people may claim they had the best grandfathers in the world, but I really did. Wylie Patterson, aka Daddy Pat, was an old country boy who farmed, worked at a cotton gin, and then went on to work at the Panama Canal until literally 3 months after I was born. He was, and remains, the best man I’ve ever known.

Mommy and Daddy Pat celebrating their 50th wedding anniversary, 1973

To say that I was lucky to have spent so much time with Daddy Pat feels funny to me because of the reasons behind our frequent visits. My mother was diagnosed with colon cancer when I was seven years old. She spent the remaining two years of her life in and out of the hospital, fighting the good fight. Thus, Mommy and Daddy Pat became very important adults in my life not only as grandparents, but also as caretakers. I spent many nights at their house when I was sick so my father could go to work.

It was during these “live-ins” that I really learned about the man my grandfather was. He used to quietly wake me in the middle of the night so we could sneak into the kitchen and eat Mommy Pat cookies on vanilla ice cream. Since he was a man of few words, this was a pretty easy task for him. Others might have called him stoic, but he really wasn’t. He was dear, quiet, sweet, and funny. He was my Daddy Pat.

As I got older and needed less attention, he changed. He slowly became moody. He resisted any and all offers to help with his lawn. He resisted to the point of taking out several of the fruit trees in his back yard. He told me he did it because the trees crowded the yard. Mommy Pat told me he took them out because he couldn’t take care of them on his own anymore and he didn’t want to admit it.

He also became repetitive. He told the same story about cranking up a Model A and nearly breaking his arm. I must have heard the same story about driving the sharecroppers to the fields via a deep dip in the road a million times. “Them older guys knew to hold on. All the new boys would damn near fly out of the bed of my truck!”

Slowly, he became even quieter, less talkative, to the point of near silence. But he always lit up when he saw me. He always hugged me, pat me on the back, kissed my cheek and said, “My girl is here!” (still brings tears to my eyes) Then, he always made sure I got one of the good swivel rockers in their living room. Mommy Pat and I would rock and talk for hours while Daddy Pat sat and listened, smiled and laughed, or frowned and said “Oh no!” (mostly when I spoke about boys)

Then, he’d be back to his old self, or as close as he ever got again. He and Mommy Pat began recounting events during the first weeks and months following my mother’s death. Daddy Pat would say, “Ernestine, tell her about how she’d wait for Joy” (my mother). So, they’d recount the times I stood by their front window, looking outside, for what seemed hours at a time, nearly 10 years prior.

“Honey girl, what you doin’ at that window?” Mommy Pat would ask.

“Waiting for mommy to come and get me.”

Daddy Pat would tell me this story over and over again, then he’d look me in the eyes and do something I’d never seen him do before. He’d cry. He’d say how sorry he was that I had that life. He’d tell me he wished he could have done more for me. We’d spent a lot of time consoling each other and it would end with, “You know, you’re my very favorite grandpa?” He’d say, “I’m the only one you know.” Then we’d agree that’s why I only had one, because the other might have felt left out.

This is when I first notice his mood swings. The man who once only showed a level head around me began to cry and get mad in front of me. Mostly, he got mad at Mommy Pat and his son, my sweet Uncle Sonny.  He usually cried about the fact I was so young when mom died or how my cousin Kenny worked so hard to help his mom, my Aunt Helen, through her battle with cancer. Sometimes it felt refreshing to see these new displays of love and grief, but mostly they confused me. At the time, I had no idea what all these symptoms meant. My grandfather was invincible. The thought his mind was failing never occurred to me.

Then I got that dreaded call from Mommy Pat. At the time, I was living in Denton attending the University of North Texas. She called to tell me she had to move Daddy Pat to a nursing home because “he’s too hard for me to handle on my own. He’s not himself anymore, sweetie.”

(continue reading….)

Mommy and Daddy Pat in the nursing home.

How To Handle Significant Dates, Significant People: I Have No Idea


One of the challenges we face as caregivers is how to handle conversations about significant names and dates that are painful for our loved ones. Outsiders and well-meaning friends might say, “Just never bring it up,” but it’s not always that easy. It’s inevitable that we’ll have difficult conversations about family members who have gone before us. And it’s inevitable that a loved one will realize, time and time again, for the first time, that significant people in his/her life are gone.

Shortly after my father’s May 2008 stroke, he often asked where his parents were. Each time he asked, I’d respond by telling him they’d passed away. This would send him into a crying jag where he’d  hold his head and go on about what a horrible son he must have been if he couldn’t remember his parents were dead. It was painful to experience, painful to watch and painful to realize how much it was hurting him to find out that his loved ones were dead. The fact that each time I told him he was, in his own mind, hearing the news for the first time made me realize I had to rethink how to handle these situations.

These conversations are inevitable though. Experts suggest having visual reminders of your loved one’s life available for them to see every day. Unless we withhold pictures of dead loved ones, there’s no way around it. Unless your loved one has absolutely no memory of significant people in his/her life, there’s no way around it. So how do you deal with it?

I haven’t figured it out yet.

This topic is especially meaningful for me because today would be my mother’s 84th  birthday. Mom died in 1974 after a rough battle with colon cancer. Dad was understandably devastated by mom’s early death. For as long as I can remember he said, “I married my sweetheart. I’ll never marry again.” He dated, but he kept his word and never remarried.

What often happens on days like this is that, even though my father’s vision has declined so much he’s nearly blind, he senses things about me.  He also seems to have body memory around significant dates. Add to this the fact that I named my oldest daughter after my mother and I named my youngest daughter after my sister Shirley, who died at the ripe old age of 27, it’s really hard to avoid these conversations.

For some time, whenever I referred to either of my daughters by name, my father’s eyes would widen and he’d look around. “Where is mommy? Why won’t she visit me? Is she mad?” That was heartbreaking. I had to tell him she was dead because if he thought she was alive and not visiting, wouldn’t that have hurt him more? So now, whenever I refer to my children I call them my daughters, the girls, or “my little ones, Joy and Shirlee,” in the hopes of avoiding reminding him that his wife is dead.

Some days I wonder if my father remembers any of his family because he asked about anybody for some time. I also try to limit my references to them and, frankly, that’s become easier since we spend more time sitting together in silence than we do talking. However, I wouldn’t be the least bit surprised if today was the day he asked questions. I wouldn’t be surprised if he reacted to hearing me saying something as simple as, “Joy, will you hand me a napkin, please?”

So, there’s a very good chance that if I visit him today he will be in a bad mood or he will sense that something is bothering me, or that hearing my daughter’s name will fire something in his old memory banks and he’ll think of his wife. I just never know what the trigger will be for him. But you can bet, if we do go visit dad, I will probably work hard not to use the word joy in any context just out of sheer avoidance. I guess we’ll just muddle through as we always do.

I obviously don’t have the perfect answer for how to handle these conversations, but I do have something to say. Be compassionate, understanding, and emotionally honest. There’s no way of controlling your loved one’s recall or reactions. They change from day to day. Do your best to avoid showing judgment. Try not to let it get to you and, please, never lead your loved one to feeling guilty for lack of memory or reactions to memories. Because, the truth of the matter is, dementia will eventually beat out the remaining memories of significant people and dates.

And I’m still not sure which is worse: remembering, over and over again for the first time, that they’ve lost people they loved or not remembering their loved ones at all.

Lucy

NOTE:
In honor of JHP, JR., retired Attorney-At-Law, who taught me to CYA, I offer readers the following disclaimer:
Please do not mistake any of the information on My Father Doesn’t Know Me as medical or therapeutic advice. All of the information contained in this site is based on Lucy Parker Watkins’ experiences, personal research and advice she received during the course of her father’s treatment for dementia.