Tag Archives: elder care

Aside

I have to admit, every time I look at the header of My Father Doesn’t Know Me Anymore, I get a little sad. The series of pictures reflects more than just JHP,JR’s life. When I look at it, I see the potential, … Continue reading

Have You Seen The Med List Lately?


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

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

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

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

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

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

Lucy
Jerome’s Daughter

 

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


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

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

Daddy Pat circa 1947

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

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

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

Mommy Pat and Daddy Pat, circa 1984

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

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

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

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

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

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

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

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

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

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

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

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

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

Eventually, he heard the whole thing.

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

Lucy
Mommy Pat and Daddy Pat’s Granddaughter

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.”


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

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.”

An Open Letter to Caregivers


Dear Caregivers,

You aren’t paid very well. In fact, most of you probably aren’t even paid living wages. You are overworked and overlooked. Despite your low wages, despite the lack of recognition, you hold positions of power. You hold power over our loved ones much like teachers wield power over our children.

Our loved ones can no longer take care of themselves. Some don’t even know when they need to eat or bathe or get dressed. They may have forgotten the world outside their rooms. Many of them can no longer speak for themselves. Some may try to speak only to find they have no control over which words come out of their mouths.  Many of them don’t even remember what you did to them or for them an hour ago. This gives you awesome power.

Those of us who need your help with caring for our loved ones need to be able to trust you to use that power with honesty and compassion. It is important that you understand their vulnerabilities are not weaknesses. Their vulnerabilities are your opportunities to improve another person’s life. Please respect our loved ones, their homes and their property whether they live in old houses or special facilities. Please respect our loved ones’ lives. Please be reliable and trustworthy; help your charges enjoy their final days, months, or years with some sense of dignity.

Please treat our loved ones the way you want to be treated when it’s your time to rely on strangers for daily care. See the importance of your work. Your presence in their lives holds so much potential value. Please strive to realize that potential by giving them something to be happy about when all else seems lost.

The fact many of our loved ones are unable to recall a visit, a joke, a family member does not mean they are ineligible for the opportunity to create new memories. If you sit with them, hold a hand, tell a joke, kiss a forehead, or share a story from your life, you are giving them something of value: your time, your attention, you. Even if they don’t remember the encounters, you still leave a mark within them.

JHP, JR, his mother, father and friends celebrating his graduation from OCS.

These men and women had full lives before you met them. They had careers, families, tragedies, successes. They fought in wars, in courts, in protests to afford you the possibility to live the life of your dreams. The life of an 89-year-old patient reaches beyond what you have read in history books. What you learned about the Great Depression, they lived. What your teachers told you about rations during WWII, they experienced.  These men and women were teachers, mothers, fathers, ministers, architects, entrepreneurs, survivors, farmers, attorneys, engineers, Girl Scout leaders, Cub Scout leaders. The vast majority of their parents had to fight for the right to vote, own property, attend school. These men and women voted for presidents you’ve only seen in books.

JHP,JR. and friend at CCC. Golf was his second love. Mom was his first.

If we take the time to tell you our loved ones’ biographies, please listen to us. Stand in awe of their accomplishments, trials, survival. If we don’t tell you details about their human experiences, feel free to ask. Feel free to show interest in who they were and how they got where they are. Don’t ever assume these older adults were anything less than productive members of our society. The person in that wheelchair is as important as your father, your mother, and your grandparents.

Please keep in mind, their value as humans shouldn’t be judged by the number of visitors they have each week. Their value as humans shouldn’t be judged by what they know about the world as it is today. Their value as humans is in their history, what they’ve done for friends and family. Their value is that they are still here, existing rather than living because they have no other choice. They rely on caregivers to help them make it through another day, in a long history of days, with some semblance of dignity and happiness.

While so many people strive to “live in the moment” that is where our loved ones often stay, without choice. They exist in their perceptions of this very moment which may be 1944, or 1955, or 1984. This very moment might be their cage. This very moment may provide shelter from the states of their lives. Please help them feel as if they are living in their moments with dignity. Please give them reasons to feel safe, secure, and important, even if it’s just for that one, brief moment. Please take good care of them.

Yours in compassion,

Lucy
Jerome’s Daughter