This, Right Here, Is What I’m Talking About!


To many people, elderly folks are just that – elderly folks. Time and time again I’ve rattled on about my frustration with people not understanding the potential wealth of history in their elderly charges. Even if the old lady in the chair didn’t have an extensive education, even if the man behind the walker can’t speak that doesn’t mean they don’t have a story to tell.

This, right here, is what I’m talking about.

Reflections often gone unseen. Please give this a gander.  ViralNova.com

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.

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.
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, growth, success, plateau, decline and demise of the man who was my father.

It’s this history, this progression that I think a lot of paid caregivers don’t think about as they trudge their way through the work of caring for an elderly person with dementia. I remember talking to one such person while dad was still living at home. I asked her if she ever thought about the things she learned about in history class and whether or not any of her charges had ever experienced the things she only read about.

She had not.

I once asked another caregiver if it ever crossed his mind that every single person in that building had experiences around the Great Depression, WWW II, JFK’s assassination, the Korean and Vietnam wars, The Gulf War, etc.

He had not.

I asked these questions because these particular caregivers had that just-get-the-paycheck air about them and I wanted them to consider the person who was before them, the challenges they’d overcome, the history they experienced, the history they made. The caregivers often acted like the residents were babies. While many of them had good intentions, they seemed to overlook the status the residents had achieved in their lifetimes. Some of these men had been young soldiers crawling on beaches dodging enemy fire. Some of the women were pioneers that paved the way for us. Most of them were well-educated either through traditional means or self-taught. They’d seen the highest and the lowest of life. They’d survived tragedies and reared successful children. Many of them had their names inscribed on plaques or piles of awards in their children’s closets.

I can only imagine what it is like to have moments of clarity where I realize it isn’t 1951 or that my wife has been dead for 30 years. I know the work of the paid caregiver is far from easy for there are physical challenges, mental and emotional challenges, and dealing with the dynamics of the family if and when that family is around. It’s not easy for anyone, but the job is to make it as pleasant as possible for the elder – the person who lives in a different era in their mind.

So, as a little birthday present for my father, I ask that everyone take a moment today and think about the living history of the person for whom they are caring today. Look for an opportunity to reflect on a historical period they lived through. Is there a chance to peek into their lives, the parts of their lives that existed before you did? If so, try it and see what interesting new thing you learn about someone today.

Happy birthday JHP,JR!  I’m thinking about you, but I’m not letting myself cry because it would probably piss you off. And that’s okay by me.

Everybody else, hang in there and, as JHP,JR would say, “Be sweet.”

Lucy
Jerome’s Daughter

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

 

Swim To The Ladder, Friend


                  
                        “I feel like I’m drowning.”

Those are the words spoken by a sweet friend of mine who was struggling with managing the increasing intensity of her role as a caregiver.  It’s such a hard place to be, but why would she be anywhere else? How could she be anywhere else? It’s a noble mindset that can leave a caregiver feeling overwhelmed and alone. But what else do you do?

After chatting with her, I went through some unpublished posts from last year, and lookie what I found. I wrote this in the spring of 2012 when I was going through managing a few realizations about people while continuing to make runs back and forth to dad’s place. I think it speaks to the drowning feeling.

“As you may have noticed, I took a few days off from My Father Doesn’t Know Me Anymore. I needed a break from thinking about this all the time, something that I believe most family caregivers need. Our loved ones seem to be constantly on our minds, even when we think they aren’t.
 
“I’ve been trying compose a wonderfully positive to piece - something any caregiver could relate to. Well, guess what? I got nothin’ right now. I don’t have any sweet little anecdotes to share about JHP, JR, his interactions with my daughters, or any clever little realizations that can help others. I just don’t have anything right now.
 
“I am exhausted and feeling very much alone.  I feel unduly judged for my concerns about the goings-on in dad’s world by people who aren’t supposed to judge me.
 
“I’m not sure how much longer I can keep this up.”
 

Reading this brought it all back to me. I felt it in my being, in my stomach, in my head – drowning while treading water in a dark lake all by myself. It was that feeling of no matter what I did it wasn’t enough for anyone, and I was tired of being seen at the over-protective, overly concerned, nit-picky B of a daughter. I needed clarity.

Like my friend and me, other family members on the front line feel the need to be with their loved ones. It’s a strong pull based on a variety of emotions – love, guilt, fear, concern, distrust, holding on, devotion, retribution, need for control, and maybe all of them combined.  These are the people who are in the thick of it emotionally, physically and mentally. It’s often hard to understand why others aren’t in it with them, why people don’t get upset about the way hired caregivers are behaving, or  why their “support” network doesn’t understand the need to talk about what seems like nothing more than trivial issues. Family and friends who aren’t on the front lines may not understand, and the front-liners feel the burden of the responsibility weighing them down more heavily when they feel alone.

It can be a lonely, scary, frustrating, exhausting place to be. It becomes even lonelier, scarier, more frustrating and more exhausting when your sounding boards, those “support” people, don’t contribute physically or emotionally. It’s not easy for anyone, but I have to say I’m biased. I lean towards being supportive of the one doing all the “grunt” work, so to speak. Getting yelled at, being bedside, lying to save the pain of realizing the people they are asking for have been dead for decades, working your life around your loved ones’ needs, leaving work to run to the hospital, doing all of the leg work creates a huge responsibility. And if that caregiver is a parent…..

So, the first thing I would say to someone feeling this heavy burden weighing them down, “Swim to the ladder.” The ladder needs to be made of rungs that represent healthy steps to build you up so you can keep going and pull yourself out of the water for a bit. If you choose activities that aren’t good for you - drink, rage, judgment, burying your head – then you won’t last much longer on this journey, and you won’t be any good to anyone.

One of the most important, yet challenging, rungs on the ladder for caregivers is to find someone, or a couple of someones, they can talk to openly and honestly. Caregivers need to be able to freely say what’s on their minds so they can  put it out of their heads and into the daylight to think it through. They need to feel heard, to feel supported. Caregivers last longer and are more effective when they are able to communicate what they want or need from those people who are their sounding boards. The last thing a caregiver needs when they’ve been giving their all is to hear someone minimize their concerns or treat them as a burden.

And, just a quick note on “giving their all.” Sometimes, the caregiver’s “all” seems to be less than someone else’s “all” because the caregiver is doing it ALL the time, because they are exhausted, because they are emotionally and physically drained from supporting the weight of another person’s physical and emotional being. After a while, an unsupported, overworked caregiver’s stamina wears out. It is like an athlete who just finished a marathon. There is a recovery period. There needs to be time between workouts for muscular, mental, emotional repairs. Caregivers can put on their blinders and focus all their energy on the tasks at hand day after day after day, but it will wear them down. It will drain them. It will leave them feeling uncertain, exhausted, in need of a friend or ten.

To the support network, I say  be straightforward with the caregiver. Let him/her know what your limits are. Don’t wait until you are at your wit’s end with your life and then blow up at them. Please try hard to keep your word, your commitment to them, and do what you said you would do. If you can’t, then be upfront. But please don’t leave the caregiver dangling. And certainly, if you can’t live up to your commitment, don’t get on the caregiver for feeling stressed out, run-down, or needy.

To the caregivers I say, take that time to find support. Set boundaries with your loved ones who aren’t on the front line with you, tell them what you need if they aren’t going to be there with you. But don’t put all your hope is one person. Find a support group. They can help you when you really are alone or when you just need a more understanding perspective. Consider journaling,  and try try try to take mental and emotional breaks to reenergize your heart, body, and mind. It’s a must. You’ve earned it!

And, finally, learn to dust drama of your shoulder and onto the floor. If you get through this journey without drama, write a book about it and share your techniques with the world. You will be a billionaire!

Keep up the good work!

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.