Tag Archives: Father

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

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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

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

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.”


Rewind: The Last Time This Happened


My best guess is that I wrote this in late 2009. Dad and I had recently “made up” after a lifetime of near hatred. I remember these feelings. I remember being awake and feeling the need to write.

It’s 4:30 a.m. I can’t sleep. I tossed and turned all night trying to think of how to get my father out of his house, down the first set of four steps just outside his door, down the sidewalk to another set of two steps, to the sidewalk and into my car so I can take him to the doctor. He’s got a fever and a bad cough. Most likely, we’re facing another bout of pneumonia.

The last time this happened, dad ended up in respiratory arrest. His his loyal companion Ishmael fiercely barked at the paramedics who were trying to attend to dad and revive him. Our relationship was much different then. I felt much differently than I do now.

The last time this happened, I watched the monitors connected to my father. Blood pressure dropping, holding, rising, holding, dropping and staying. Intubated and sedated, he knew nothing of what was going on. He had no idea he was knocking on death’s door.

The last time this happened, I held my father’s hand as I watched his heart monitor flash wildly with tachycardia and hold, then slow and hold. I whispered in his ear to relax. I suggested he hop into our old, blue 1970 International pick up truck with the camper on the back and drive. “Three on the tree dad. The clutch sticks sometimes and there’s not a bit of power anything in this old beast.”

The last time this happened I talked him through the drive to our land in Stephenville. I led him to the gate with the tricky latch that opened up to our 50 acres. “There’s that barbed wire fence you and mom put up. It’s still here!” I suggested he unlatch the gate, push it open, then get back in the old blue truck and drive forward. “Don’t forget to shut the gate.”

Mom in front of the barbed wire fence she and JHP,JR built around our land.

The last time this happened, I led him across the bumpy earth as he drove that big blue truck. “There’s that old jackrabbit!” “Damn, that cactus has grown!” We made our way to the steep drop to the old gully and back up the other side, narrowly missing scrub brush while we bounced our way up to the worn path that leads to the circular grove of trees just next to the old stock pond. Out of the truck, walking around, I led him to the dam he and mom built for a stock pond that never sustained any edible animal life. It was home to skeeters and briar that scratched and bloodied the legs of my brothers and sisters when we were all much younger.

The last time this happened, I watched the monitors begin to reflect the stability creeping back into my father’s body as he walked the dusty pathways worn over 30 years ago by two parents and their six children. I watched as his eyes moved behind their lids as he looked for the creek that once flowed across our land. I looked as the corners of his mouth began to raise when I reminded him of the “outdoor plumbing” by the old mesquite tree. “Is the shovel there, dad?”

Stable. Calm. Normal.

The last time this happened, I slept on the floor of the hospital waiting room. The chairs were hard, the floor felt softer. I wrapped three hospital blankets around me and over my head for warmth, and darkness, and a few moments of respite. My oldest and dearest friend woke me with a giggle saying, “Little cocoon, how is he?”

The last time this happened, dad woke up and was breathing on his own within 24 hours. He told everyone about the great journey he went on in the old blue truck with the camper on the back. People called me to tell me what a success my work had been and how wonderful it was that I could help him make it through those dangerous few hours.

The last time this happened, I sat in my father’s hospital room as he berated me for helping him stay alive, for my existence. Yelling at me and calling me the most foul of expletives used against a woman.

The last time this happened, I wept as I looked the old bastard in the eyes and told him, “You liked that journey to Stephenville. You felt safe there? This is the reason you made that trip. This is the one who slept on the floor so you wouldn’t be alone at the moment of death. This will surely rethink being here for you when this happens again.”

The last time this happened, I stood in the hospital hallway bawling as I gave a social worker a very loud and tearful lecture on the reality of some relationships. “You have NO idea what you are talking about!”

The last time this happened, dad entered hospice.

The last time was almost a year ago. He’s no longer on hospice. He’s no longer calling me the “C” word. He’s fallen deeper into the depths of dementia.

After years and years of being the father I never wanted, one day he said to me, “Why is it that even though I don’t know you, I know I hate you?” In that moment, I spoke the truth and only the truth. I did not tell him everything, but I told him a lot. “You’ve never liked me that I know of. After mom got sick, you got depressed and began drinking. That was nearly 36 years ago and you haven’t stopped since. You’ve always been a mean drunk. I’ve never felt safe with you and I’ve always tried to get you to understand. You’ve always had these other ideas about who I am. And you’ve hated me all my life. I think you wish I was never born.”

Then, the world stopped.

Silence.

And he said to me, “I drink? I’m mean? I don’t remember. But I’m sorry. I’m sorry I treated you that way.”

No excuses. No blame. No anger.

That was three months ago. Some days he knows who I am. Some days he doesn’t. But every day since, he’s been nice to me, welcoming me with a toothless smile and a kiss on the hand.

Today, I’m afraid. Today, I care what happens as I try to help him down those steps. I have thought about using his cane. I’ve thought about tying a strap around his waist. I’ve thought about pulling my car into his yard so he only has to maneuver four steps. I’ve thought about what I will do if this is pneumonia. I’ve thought about who will be with him when he dies. I’ve thought about how I will feel when he does.

And I’ve thought about that conversation we had in May, 2008 while he was in a rehab after his stroke.

“I’m surprised your here,” he said.

“Me, too.

“Then why are you?”

“Because, I realized if there’s any chance of us ever getting along, I have to make the opportunity. In 20 years, you’ve never come to me. So I am here. I can be the daughter that dances on your grave or I can be the daughter who cries when you go.”

“I don’t want you to dance on my grave.”

“Neither do I, but I can’t do this alone.”

If We Could Make Just One Sound At A Time…


One of the issues my father struggles with is the inability to sort through the various stimuli in his environment, especially auditory. I believe this is a form of sensory processing disorder that accompanies vascular dementia. For example, if I am talking to him while my daughters are having a separate conversation in the same room, and his dog is “requesting” a treat, dad will either struggle to figure out what words were intended for him or he’ll close his eyes, grimace, and shut himself off. Since I only play a dementia specialist on the Internet, this is a somewhat-educated guess via online research that tells me he very well may have auditory integration issues.

While I don’t understand all the physiological reasons for this inability, it makes sense to me that strokes and alcoholism have impaired portions of his brain that would otherwise be able to differentiate, tune out selectively, or just hear it all and know it. As I watch my father’s responses, or lack of response, it’s becoming more apparent that busy environments are extremely challenging and frustrating for him, if not painful.

Part of me wonders if this issue hasn’t always been there in a milder form, and if it’s been exacerbated by the damage to his brain. I say this because I remember some of his behaviors during my younger years that may have been indications he had issues with auditory stimuli. I’ve also found that, with age, I struggle with feeling over-stimulated by lights and sounds, especially a combination of them at higher intensity. Frankly, I have trouble writing with any noise other than bird songs in my immediate environment. Just ask my kids.

I’ve often watched Dad cover his head, eyes, and ears with his arms and hands as if he’s in pain. I’m beginning to realize he may be trying to shut out some of the stimuli. Ever since mom died, he’s had a tendency to be reclusive, but now these changes in his brain seem to have made it physically painful for him to be in the presence of more than just a few people, especially if those people aren’t aware of his issues. At most, he seems to be able to manage having my two daughters, the dog, and me in his presence at the same time. In any other situation that would be too much for him, but I think the fact he enjoys hearing kid-noise makes it less painful for him. In fact, I think he enjoys listening to their chatter more than he does talking to me.

Wednesday, I visited Dad during lunch time. A very talkative man was sitting at the same table.  Initially, I tried to focus on dad, but this white-haired little guy kept talking to me. He’s just a talker. He’s a sweet man, too, and I do love seeing him.  So I spent most of the meal chatting with this gentleman and trying to bring my father in on the conversation.

As usual, Dad barely said a word. Every time I spoke to my father, the other gentleman spoke. Dad turned toward me, looked at me, closed his eyes then turned away without giving a verbal response. This may have been because Dad’s attention was immediately drawn towards the other man’s words and my father was then unable to get back to his thought . It may have been his frustration with being interrupted. I honestly can only guess because he didn’t speak.

JHP, JR and my daughters

On the other hand, it’s a completely different experience when Dad spends mealtime in his room with one voice speaking at a time or music playing. Wednesday evening, my daughters and I packed up our usual treats for dad and treats for his dog, along with my eldest daughter’s violin and my other daughter’s recorder. Dad was asleep. When I woke him up to announce our arrival, he was thrilled the girls were with me. I decided we would all sit together in his room while he ate, so he could interact with his granddaughters without being interrupted by other residents who love seeing my girls.

These really are some of our best visits with him, even though there is very little conversation. My oldest daughter played her new violin. My youngest daughter filled a plastic glove with water and drew a face on it. I worked on putting out chocolates for dad, putting away the remaining candy stash, and getting the dog treats put away.

Playing violin for Grandpa

Hardly a word was spoken the entire time, but Dad tapped his foot. He bobbed his head. It took me a while to realize what he was doing because I was concerned he was falling asleep and his dog would catch the sandwich as it hit the floor. As I watched to make sure Dad didn’t drop anything, I noticed he was intentionally bobbing his head to the music. When my daughter fumbled through a new piece of music, he popped his head a little more obviously. That’s all. He bobbed his head, he tapped his foot, and he listened to her play violin. He was being her metronome.

Later, as usual, silliness took over. My youngest did her circus act on his walker, jumping up and down doing her version of a “walker dance.” Then my older daughter jumped in and did some of her new Hip Hop moves. Dad smiled and clapped his hands, and he made it very clear that he likes it when the girls are silly and talkative. It’s like they are on stage. He gets to watch and even if he doesn’t understand exactly what they are saying, he can tell they are having fun and that they are doing it for him.

It’s such a different experience from spending time with him in the common areas of the facility.

This makes for a challenging situation, though. While I want him to be around people, I don’t want him to be miserable or uncomfortable. I want him to interact with people, but I prefer he interact with people who are sensitive to this part of his struggle. I’d love for the facility where he lives to have an employee designated specifically for people like my father who can’t handle being in the common areas, just to fill the gaps since families can’t be there all the time.  I’d like for all elder care facilities to have that service available to those more reclusive residents. But for now, the focus of our visits with Dad is to give him that type of interaction that seems to work best for him.

I think my daughter put it best. “Grandpa isn’t deaf. He hears everything all at once. So we have to make noises one-at-a-time.”