Tag Archives: dementia

Alzheimer’s Hypochondriasis, The New Fear.


Years ago, I was talking to my father and listening to him complain about misplacing his keys or forgetting to do what he considered a daily task. It worried him. He believed it was an indication of brain degeneration. I thought he was being silly because “everybody forgets.”

A while back, I found myself plagued with fear about my own cognitive health – a concern that has continued. I could not, for the life of me, recall someone’s name, someone I’ve known for over six years. I was blank. I picked up my phone to look through the contacts and thought, “I bet her name is at the end of the list,” so I reversed the order of my search and started in the V’s. Her name is filed at the beginning of the alphabet. Being wrong made the feeling worse.

I was horrified.

When JHP, JR was alive I called my forgetfulness “Vicarious Dementia” and pass it off as no big deal. This bit of forgetfulness where I couldn’t pull someone’s name from anywhere in my brain scared me more than forgetting one of my daughters’ many activities, or to call back a friend. This event scared me because as hard as I tried to remember the name, it was gone.

Of course, this got me to thinking about my own situation and what I would do if I was struck by dementia. I realized I’ve been taking steps, somewhat unconsciously, to lessen the likelihood that I will be in the same situation my father is in.

  • I rarely drink anymore.
  • I’ve upped my vitamin regimen to include nutritional supplements that work on the brain and memory.
  • I exercise almost every day. Injuries and illnesses are the only things that stop me.
  • I quit smoking.

These are things that normal people do normally, right? Up until a few years ago, I took my long-term health for granted thinking I was nearly invincible. Life changed and I began doing unhealthy things in reaction to my new life circumstances. My current life choices are both a response and a reaction to seeing what my father went through. And, as one dear friend says, I’m not a good drinker and my body lets me know how much it dislikes alcohol. While I have been secretly freaking out about what my situation might be like when I’m older, it turns out this is a worldwide fear. Out of the blue, I received a note from a good friend that included a link to a NY Times article entitled, “Our Irrational Fear of Forgetting,” by Margaret Morganroth Gullete.

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Support, Support and More Support. Did I Mention Support?


I had an interesting conversation the other day that served as yet another reminder that none of us are truly alone, even when nobody else is in the room.

A friend of mine, who is  the primary presence in his parent’s life, told me, “I get tired of feeling upset all the time. I get tired of feeling like nobody really understands. I get tired of every mention of my father being viewed as loaded.”

We went on to talk about support groups, family support, friends, and all the other options out there. Neither of us like going to the support groups at the facilities where our parents live because we want at least a little bit of a curtain of emotional privacy separating us from the caregivers and other staff. We both agreed we also tire of hearing, “That’s the nature of the disease,” over and over again from staff.

We both agreed that facilities could better serve their populations and the families by having qualified social workers on staff. It’s one thing to talk to a staff nurse or a director, it’s another thing to speak to a trained counselor who is bound by the rules of confidentiality and is experienced in the issues surrounding emotional communication.

Then, he said something that really struck home. “Nobody gets it. My brothers and sisters don’t get it. My wife doesn’t get it. Everybody acts like they get it but they don’t and I don’t know how to explain it. I carry sadness around all day everyday. I carry a little bit of guilt with me everywhere I go because I’m not always there. Besides staff, I’m all he has. I never get a break even when I’m away from him because I care so much about what he is going through. I want and need to talk about it but nobody wants to hear it as much as I need to say it. I’m sorry. I sound like such a whiner.”

I laughed when he finished because I think many caregivers feel like whiners. I think many caregivers feel like they are sometimes labeled as whiners. I think some people do label caregivers as whiners.

Here are a few things we came up with that may help.

  • Try to find the extraordinary in the ordinary because every little bit helps.
  • Find several outlets be they people or activities. Support groups, friends, hobbies can all help alleviate stress even if they don’t change the circumstances. Switch it up so nobody gets too much.
  • Use what you’ve learned to help others whether you become another caregiver’s ear and shoulder or you blog about it.
  • If you really feel like you’re not doing the right thing, or not spending enough time with your loved one, change it. Then see how you feel.
  • Treat your loved one the way you want to be treated. When we do this, it sure seems to help alleviate some of the feelings of guilt.
  • Avoid alcohol or other drugs. They really only makes things worse in the long run.

Have You Seen The Med List Lately?


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

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

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

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

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

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

Lucy
Jerome’s Daughter

 

Jenni Inspired Me To Come Back


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

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

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

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

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


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

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

What’s a family to do?

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

JHP, JR and his mother, 1923

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

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

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

JHP, JR and Mom, circa 1947

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

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

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

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

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

Wish me luck!

Jerome's daughter and granddaughters, 2004

…and good luck to you on your journey,

Lucy
Jerome’s daughter

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


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

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

Daddy Pat circa 1947

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

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

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

Mommy Pat and Daddy Pat, circa 1984

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

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

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

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

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

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

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

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

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

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

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

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

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

Eventually, he heard the whole thing.

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

Lucy
Mommy Pat and Daddy Pat’s Granddaughter

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.