Tag Archives: family

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.
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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

 

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

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

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