On the Shoulders of Giants: A Mighty Day for Dad

March 30, 2015April 5, 2015Long Distance Daughter Tags: dementia, hospice, Navy, veteran, we honor veterans, World War II 8 Comments

I have lovely childhood memories of my mom reading books like Goodnight Moon and Green Eggs and Ham to me at bedtime.

But when it was my dad’s turn, it was more of a battle. Literally. Having served as a torpedo bomber pilot in the U.S. Navy during WWII, dad lulled me to sleep with war stories about his missions in the Pacific or the time he had to make an emergency landing because his engine caught on fire.

Dad didn’t limit his Naval enthusiasm to bedtime. He roused me in the morning with a hearty rendition of “Anchors Aweigh.” He “rallied the troops” by marching down the hall barking: “Battle stations, man your battle stations. Make preparations for getting under way. Set the special sea and anchor detail.”

During the 1980s, Dad kept his Navy medals in a frame on the wall by his leather Lazy Boy recliner. And when my friends came to visit and asked him about them, he would look up from his New York Times crossword puzzle and roar, with a gleam in his eye: “What? You mean DeeDee never told you I was in the Navy?”

My dad’s military service, which totaled more than 20 years — active duty and time in the reserves combined, has always been a great source of pride for him. That’s why I was so thrilled when We Honor Veterans, a program of the National Hospice and Palliative Care Organization (NHPCO) in collaboration with the Department of Veterans Affairs, recently honored him with a recognition ceremony.

The event was organized by Sandy Duggan, a volunteer and chair of the We Honor Veterans program for Home Health and Hospice Care in Merrimack, N.H. Dad’s event was just their second official ceremony, and it was planned to coincide with my monthly cross-country visit as well as his 93^rd birthday. It came together quickly. I had considered waiting so that more of our family, including my husband and son, could be in attendance. But then I decided it was important to do it as soon as possible. Dad has been part of the HHHC hospice program for several months and he has dementia, so I wanted to give him the opportunity to be as healthy and aware as possible when receiving this honor.

Dad has good days and bad, so just to be safe, we initially planned to hold the festivities in his room at the retirement community where he lives. But as word spread and the guest list grew, we took a gamble and moved the party to the large sunny parlor down the hall. I hoped he would be awake and interested in participating when the time came.

I breathed a sigh of relief when he made it to the room and was transferred into a wingback chair, flanked by Navy veterans. But did he know why he was here? Did he realize this military celebration was for him?

As the Home Health & Hospice Care Wellspring Singers began with “America the Beautiful,” his smile flickered on and off. He listened attentively as fellow WWII Navy veteran Preston Walsh, a member of the VFW in Hollis, N.H. read a list of his accomplishments and thanked him for his service. But it was when event organizer Sandy Duggan knelt beside him that I saw it was all sinking in.

Before she placed a pin of appreciation on his lapel, she looked him in the eye and explained that everyone in the room was there to honor him for his service. She told him how much he was appreciated. His eyes welled with tears and so did mine. His love for his country and military pride were still present, if only for that moment.

As part of the ceremony, I read a letter from the Secretary of the Navy written to my dad in 1945. And one of dad’s caregivers, also a Navy veteran, shared his thoughts about my dad’s service. The ceremony concluded with rousing renditions of “Anchors Aweigh” “When the Saint Come Marching In,” and “Happy Birthday.” And then, as is the case with any fine celebration, there were cupcakes.

As one of the younger veterans in attendance took his leave, he shook my hand and said: “Be sure to tell your dad that his generation paved the way for us. We stand on the shoulders of giants like him.”

Lately, I know my dad doesn’t always feel like a giant. And I think he and I both miss the power and authority he used to wield before dementia took hold. But this was a mighty day for dad, when we all got a glimmer of the officer and gentleman that he once was and always will be. And for that I am forever grateful.

Check out honoring veterans for more information about the services hospice offers to recognize the men and women who have served our country.

Grief is a Wild Untamed Thing

March 19, 2015March 22, 2015Long Distance Daughter Tags: aging parents, caregiving, dementia, grief 21 Comments

This is my mom. Stunning, isn’t she? Beautiful inside and out. It’s hard to believe it’s been two years since she died.

In some ways, the time has flown by. And much has changed. My strong and disciplined dad who used to swim three days a week, work out in the gym and write a nature column for the newsletter in the community where he lives, suffered a heart attack and now also battles dementia. My son, who was a little boy in his first real suit at his grandmother’s funeral, is now a young man, taller than both his parents with a deep and resonant voice that still surprises me on the phone. Who is that guy?

But one thing is constant. I still miss my mom. And I know that as long as I’m here, I always will. Dealing with all my feelings has been a process. Here are a few things I’ve discovered along the way.

Grief is a wild thing. You can’t tame it. You can’t control it. I mean, did I want to cry in the middle of a department store on a hot August evening? No. But there I was in Marshalls on my mom’s birthday, the year after she died. A sappy song from the ’80s was playing. And then I saw a beige blouse that was just her style. Man, did she rock a nice neutral. I wanted to buy it for her, but I couldn’t. I was once again slammed by the realization that I could no longer locate my mom on this planet in physical form. So I cried. Big sloppy tears in the aisle between summer clearance and formal dresses.

There are times when you really want the emotions to flow, you’re ready to just let go and feel your pain. You’re in a safe place. You’re with people you love. It’s “appropriate,” even expected, to express your feelings. And nothing happens. No matter how hard you try. In fact, in spite of trying, the expression of grief you so desperately want to release does not come.

Other times, crying is the last thing you want to do and there you are, perhaps as I was, but likely not, weeping in front of a bunch of bargain-hunting fashionistas.

This year, I’ve decided to stop fighting it and seize whatever opportunities I’m given to grieve, and surrender to them. What else can you do? As Jeff my meditation teacher says, “Better out than in.”

Grief has no expiration date. Some people tell you that grief gets easier over time. And I have noticed there is a rawness that scabs and callouses. Some people tell you to anticipate a year of grieving. But I have found that not to be true.

It’s been exactly two year since my mom died, and I am not done. In fact, there have been some days this second year that felt more gut-wrenching than the first, because I thought I was somehow supposed to be finished with all my sadness. So now I say maybe there are no rules, no deadlines. Maybe you just have to take grief as it comes.

Grief has a saving grace. For me, it feels like every major milestone in life comes with a host of surprising feelings that nobody lets you in on til you get there. Like after my son was born and they just let us take him home from the hospital – without a permit or any type of formal training whatsoever. It seemed amazing, insane, actually, that I could just stroll out the door with this exquisite bundle of humanity in my arms. Especially since we really had no idea how the car seat worked.

At the other end of the spectrum, I also remember one of the first times someone I cared about died. In the days after it happened, I was just as stunned, but in a different way. As I rode in a car to the funeral I looked out at the busy street in awe. How were all these people walking around, going about their business as if nothing was different? Did they not understand that the world had been irrevocably altered by the loss of someone so dear?

Recently, my friend Whit and I were talking about losing a parent, since we both had gone through the experience. At one point he said: “Grief is kind of like the most wonderful club you’d never wish to belong to.”

I had to think about this. Here was yet another surprising concept to take in. There was a club and I was a member, along with everybody else in the world who had ever lost someone they loved? He talked about how grief can provide a lens into a different way of seeing things, a shared understanding of how to live life with perspective.

So I thought about that, and how my life has changed since I have been not only been touched, but fueled, by grief.

Since my mom died, I quit a job that wasn’t right for me so that I could spend more time with my family. I grew more committed to my spiritual practice. I went back to school to study patient advocacy, and I will graduate in June armed with new skills, knowledge and a strong desire to fight for the rights of elderly patients as well as those who care for them. And most recently, I started writing this blog, something I have wanted to do for four years but finally found the courage to start.

And so I decided, maybe Whit is right. I certainly am a reluctant member of this club. But I also realized sometimes grief spurs us to challenge ourselves and realize dreams we didn’t know we had. And the way it can bring us all together, that can be something kind of wonderful.

A Little Improv Can Go a Long Way with Dementia

March 8, 2015March 9, 2015Long Distance Daughter Tags: aging parents, Alzheimers, caregiving, communication, dementia, eldercare, improv 197 Comments

Credit: Tom Magliery

Most days, dad sleeps a lot. But today, he’s wide awake. He’s on the phone, yelling at me. He’s so angry, but there’s sadness in his voice, too. “I don’t have any money, I don’t have a car. I don’t even have any shoes,” he tells me. “And I’ve got to go down and see mom and dad.”

Now, my dad is 92 and his parents have been gone for decades. He has money in bank accounts that he doesn’t remember how to access, and he has a car he’s no longer able to drive. These days, his shoes mostly stay in the closet. He wears his slippers when he has the energy to walk down to the dining room to eat with his friends Leo and John, or when he gets the urge to bust out of the skilled nursing wing where he lives. He heads straight for the locked doors until one of his caregivers redirects him.

I can sense his frustration as the dementia that grips him continues to increase. Confusion rolls in like a fog. Words fail him. And I imagine he just wants to find something familiar that he can hold onto. Since my mom died two years ago, he’s become unmoored, slowly drifting farther and farther away. After being together for 67 years, he can’t get used to being alone.

Sometimes when I call, he tells me of his plans to marry a nurse or one of his aides. “We’re having the wedding before the end of the year,” he’ll say emphatically. “So you better hurry up and get over here.”

Since we are so far away from each other, the phone is our main means of communication. Often, the sound of my voice calms him down, but today it’s not working. Nothing I say helps. I feel useless and small. I shut down and he rails on. I’m reminded of when I was a little girl and he would get angry. I would close my eyes and picture him as a giant bear or a roaring lion. Strong. Powerful. Now the dynamics have shifted, but I can’t always process the change I’ve made from daughter to caregiver. Even though I know I’m a grown woman and he’s an old man, I still have to push down my fear at his words and his reproach, and remind myself he’s the one who feels powerless now.

Suddenly, the conversation takes a turn. “Did you even know that I won $8 million?” he demands.

I tell myself not to argue with him. And I try to remember to treat it like improv. Yes, I mean improvisational comedy, the form of live theater where the storyline, character and dialogue are made up in the moment.

I’m a big fan of the hilarious Tina Fey, creator of the sitcom 30 Rock and so much more. In her memoir, Bossypants, she lays out some cardinal rules for improv comedy. I’ve discovered these guidelines can also help when communicating with someone you love who has dementia. In both situations, you try your best to work with the situation you’re given, no matter how crazy it may seem. The end goal: Understanding, connection, and if you’re lucky, a little shared laughter.

Rule number 1: “Agree. Always agree and say yes.” Tina Fey notes that in the real world you won’t always say yes to everything. And that’s true with someone who has dementia, too. But yes is often better than no. It does no good to argue whether or not your dad has really just won $8 million when he tells you so. He believes he has. In improv, the rule of agreement reminds you to “respect what your partner has created” and to at least start from an open place. “Start with yes and see where that takes you.” Maintaining respect for your loved one with dementia and staying open to what they’re saying goes a long way.

Rule number 2: “Say yes AND …” In improv, you’re supposed to not only say yes, but also add something of your own. This idea of contributing and “staying in the scene,” really staying present in the conversation, also helps with someone who has dementia. Say dad is still talking about winning that $8 million. Instead of trying to force him to realize his belief is untrue, ask him what he would do with the money.

Rule number 3: “Make statements.” This is a positive way of saying don’t just sit around raising questions and pointing out obstacles. Whatever the problem, be part of the solution. Instead of insisting that there’s no way Dad hit the jackpot, now imagine what you would do if you won that kind of money. Tell him about it.

Rule number 4: “There are no mistakes, only opportunities.” Things don’t always go your way in improv and you have to learn to be flexible and adapt. Dementia? Same. Sometimes, the “news” of Dad winning $8 million leads to a great conversation about his capitalist hopes and dreams. Other times, you end up getting accused of stealing his shoes.

Having a parent with dementia can feel a lot like the movie Groundhog Day. Events are likely to repeat themselves. So when things go wrong, I try to keep my sense of humor and remind myself that chances are, dad and I will have this talk again soon. And at least then, I’ll have another opportunity to get it right.