Tag Archives: caregiving

Finding comfort in terrible times

As I’ve mentioned before, I’m a journalist and I’m often required to cover tragedies like the Paris terrorist attacks. In this digital age, where we are all just a tweet or a Facebook post away from another even if we are physically an ocean apart, watching the horrific scene unfold virtually live was chilling.

It’s also soul-draining to watch the death toll steadily rise, and watch the videos of the blasts and people running and screaming for their lives, as CNN and other news network repeatedly air the footage.

Artwork created by Jean Jullien.

Artwork created by Jean Jullien.

While the evil forces at work seem almost impossible to defeat, there are always signs of humanity, even in the darkest of times. For example, there were reports of strangers in the area opening up their homes to people fleeing the multiple attack scenes. These people offered shelter to those who needed it most, and did so without prompting. In an example of technology being used for good, a Twitter hashtag was set up so that those escaping could find a nearby safe haven. Churches and temples also opened their doors.

There was also a restaurant in the area of the attacks that was placed on lockdown for several hours. Though it’s doubtful that anyone had an appetite as word spread about what was happening around them, the restaurant served everyone a lovely meal. The staff said they were just doing their jobs. This was the definition of comfort food, offering sustenance to the weary.

It makes me think, on a much more personal level, how strangers and acquaintances have offered me comfort in my darkest days of caregiving. Even in the worst of times, there are people around us willing to make a difference, to offer a helping hand.

To those near and far, who offer comfort to those who need it the most, thank you.

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Applying writing wisdom to life as a caregiver

I attended the Atlanta Writers Conference this weekend and learned interesting tidbits about the publishing industry and enjoyed hearing about other writer’s projects.

Raymond L. Atkins, an author and guest speaker at the conference, told about how he handled a situation where the publisher selected a cover image that he felt didn’t fit the plot of his novel. The publishing house wanted to market the book as a mystery, when the author knew his book was a romance.

Sorrow_Wood_FRONT_sample2

The chosen cover featured an ominous barn. The author was puzzled because there was no such building in his book.

The publisher said they knew that, and wanted him to add a barn to the story.

The author didn’t really want to, but according to his signed contract, the matter was out of his hands and at the discretion of the publisher. So he added the darn barn.

Two pages later, that barn burned down.

To me, this was a great example of “when life hands you lemons, make lemonade.”

As caregivers, we may find ourselves following advice we question but feel powerless to challenge. But we always have power over our own actions and our attitude.

Don’t be afraid to burn barns, figuratively speaking, of course!

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Reminders of a loved one come from the strangest of places

Over the weekend, I was watching the Unauthorized Melrose Place Story on Lifetime (yes I know, feel free to judge me for my guilty pleasures.)

Let’s just say I was in a nostalgic mood.

The commercials were not geared towards the Generation X crowd that was likely watching the movie, but an older demographic. Commercial after commercial, I felt like I was being bombarded by memories of my parents. Can’t a girl catch a break while watching a stupid movie?

Ensure

First, there was the Colace ad, and that reminded me of Mom’s long battle with constipation over the last year of her life, and how that lowered her quality of life.

Then there was the Ensure ad, which of course made me think of Mom’s last month or so, and how that’s all she consumed, her meals coming down to chocolate, vanilla or butter pecan flavor drinks. I also was responsible for ordering Ensure for my dad when he was in the nursing home. Dark chocolate was his favorite, which was strange, because he never was a big chocolate lover.

Finally, there was the Depends ad, though this was for a new, “sexier” version for younger women with only mild bladder control issues. In fact, Mom really didn’t have an incontinence issue until the last week or so of her life, once she started the morphine. The ad made me remember a humorous moment years ago, when a Depends representative showed up at the newsroom I was working in to promote new products for the Health content channel I was helping to manage. My coworker got the giggles and you know how contagious giggles are! Fortunately, the Depends rep had a good sense of humor. I guess you have to when you work there.

Little did I know that a couple of years later, I would spend quite a bit of time perusing Depends for my father, as Alzheimer’s made him incontinent.

I’m guessing most people my age watching such a movie would completely tune out such ads, because it has nothing to do with their lives. But as caregivers, we become quite familiar with many things we thought we never encounter.

Who knows, maybe Mom was judging me from the other side for my movie choice!

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We’re all juggling so much

I was on a business trip in Pittsburgh over the weekend. I don’t get to travel often, and certainly not over the last several years, when caregiving duties required me to be on call at a moment’s notice.

So it was a nice change of pace, and it just happened to be a perfect weather weekend in Pittsburgh.

Pittsburgh skyline at sunset from the Roberto Clemente (aka Sixth Street) bridge.

Pittsburgh skyline at sunset from the Roberto Clemente (aka Sixth Street) bridge.

I had a chance to talk to locals on my Uber trips from my hotel to my workplace. While I am definitely not one to initiate conversation, like my mom was, I usually end up enjoying my conversations with strangers and often learn something along the way. Pittsburgh proved to be no different.

I know often in the midst of a caregiving crisis, I would look around at others who seemed to be carefree and envy that they weren’t saddled with so many heavy responsibilities. But as it turns out, most of us are shouldering more than we’d like, and we’re just trying to do our best to survive.

One of my Uber drivers was an immigrant who is working towards a college degree and hopes to go to law school, but an unplanned child that just arrived in the world threatened to derail his plans. Another driver is a father of three kids, and juggling parenting with a full-time job that required him to get up at the crack of dawn, then works Uber whenever he can to earn money to pay for all of the activities his kids want to be involved in.

It’s so easy to get wrapped up in our own problems and dismiss other people’s struggles. A 10-minute Uber ride reminded me how so many of us are dealing with unexpected detours in our lives, and we’re doing our best to navigate uncharted territory.

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Finding caregivers where you least expect it

I was dreading going to my dental cleaning appointment for multiple reasons. I always dread these appointments because I’m not fond of the forced chatter, especially when there are instruments in my mouth!

The main reason I was dreaded the visit was because the last time I was there, my mother was headed to the emergency room for the last time. I was already on my way to the dentist when I received my mom’s call, saying she couldn’t stand the pain anymore. I remember texting my mom’s personal caregiver from the dentist’s chair. I didn’t tell the staff about the caregiving crisis I was dealing with at the time because frankly, it was none of their business.

Photo: Freeimages.com/Olaf Knauer

Photo: Freeimages.com/Olaf Knauer

I remember sitting in that dentist’s chair over the next hour, my heart pounding, but not for fear of the tools buzzing in my mouth. After all of the ups and downs with my mom’s health over the last couple of years, was this finally it? The real beginning of the end?

In my heart, I knew it was, and it terrified me.

The very next day, I left for New Mexico to be with my mother.

I always have the same dental technician who does my cleaning. She asked the obligatory “how my summer was” question, and instead of just glossing over the question and telling a little white like like I would normally do, I told her the truth. My mother had died, and I had spent the summer dealing with post-death tasks.

She offered her condolences and asked what caused my mother’s death. When I told her colon cancer, she began telling me about her own caregiving experience that she is going through with her father-in-law.

Some of her experiences were similar to mine, in that her father-in-law’s tests came back fine, until he was diagnosed with Stage IV colon cancer. (My mom was diagnosed with Stage III.) He actually collapsed in the emergency room, and that’s what finally forced doctors to figure out a diagnosis.

She said they chose to move him into their home, so they could help take care of him and so that her husband would get to spend extra time with his father. She talked about the guilt her husband felt for not being able to help his dad more, and sooner, something I can totally relate to from my caregiving experience.

The conversation made me think about how many people we come in contact with in our daily lives that are also in a caregiving situation. It’s probably more than we imagine. If I hadn’t opened up, I would never had known that my dental technician was also a caregiver.

Don’t hesitate to share your caregiving story with strangers, if the opportunity arises. You never know what tips or support you may be able to offer each other.

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A time of transition

Friday marked the three-month anniversary of my mother’s death. Certainly not a day goes by that I don’t think of her, but I am beginning to move through a transition phase.

Everyone’s grief process is unique and whether it takes a month or a year or 10 years, there is no reason to delay or rush the process. Nowadays, so many people want to be able to read a book or even just a Facebook post that offers them 10 steps to grieving and getting on with their lives.

I couldn't make it my home without adding a bit of "catitude" to the decor.

I couldn’t make it my home without adding a bit of “catitude” to the decor.

But like with the rest of life, grief is not easy.

With each marker of time, such as a birthday or holiday, the reminder of a loved one’s passing hits home once again. With each such event, the loss becomes more permanent.

I made decent strides while I was in New Mexico clearing out my parents’ belongings from the condo and beginning to add some of my own touches. This will be a long work in process, physically, financially and emotionally.

But the residence in New Mexico is slowly transitioning from being a place of sickness and burden, to being a place of rest and reflection. These kinds of shifts don’t happen overnight, and I know there will be bumps along the road.

There is a point where former caregivers can see beginnings, instead of just endings along their path of life. It takes some getting used to, but it’s part of the journey.

What helped you to cope after the death of a loved one?

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My essay about dying at home posted on The Caregiver Space

I’ve been reading posts on The Caregiver Space for quite some time, but never had time to submit my own writing.

Now that I find myself in a post-caregiving phase of my life, I’m really trying to focus on writing a series of essays that have been stewing in my brain for awhile.

hospital bed

Last week, The Caregiver Space published my essay, “Why dying at home is not all it’s cracked up to be” and the reception has been quite positive. The post was published on The Caregiver Space Facebook page where it generated several hundred likes and many heartfelt comments.

The essay is not an attack on hospice care workers; I admire most of them and think they do a phenomenal job. Hospice care is truly a calling in my opinion, and one can see the benefit of the loving, compassionate care they provide.

My essay is a look at dying at home vs. dying in a facility from the family caregiver’s perspective. After my dad died in a skilled nursing facility, I was all for my mother dying at home. But the reality was a bit different. It was an emotionally brutal experience that I wouldn’t wish on my worst enemy. That’s not to say that her death would have necessarily been better in a hospital, it would have been difficult in a different way.

My main point of the essay is to bring awareness to family caregivers in rural areas. They may find that the local home hospice agency is understaffed and overworked, and cannot provide the around-the-clock care that is often touted by die-at-home advocates. People should be aware and prepare themselves for taking on more of the nursing duties of caregiving. If they feel they cannot do it themselves, they should seek out help from family, friends or professional caregivers.

If you have the time, please read the essay and let me know what you think. Also, please share with anyone who you think could benefit from the information.

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White House Conference on Aging: Great discussions, now we need to see action

Update: I was moved by many of the stories and statistics shared at the White House Conference on Aging. How little paid caregivers earn and the rallying cry to pay them a livable wage of $13/hour. A woman who juggles the demands of motherhood and her father who has Alzheimer’s, yet sits on hold or gets the run-around when calling for help from government agencies.

There were many programs and initiatives unveiled at the conference, and while many sound promising, the proof will be in the results.

Original post:

The White House Conference on Aging is happening today. I think it will be of interest to many who follow this blog.

I wish I could be in Washington, D.C. to participate in person, but I am following along with the live stream of the conference and taking part in the conversation on social media by using the hashtag #WHCOA.

whcoa logo

I hope the conference will help generate greater awareness for the issues impacting caregivers in America, both family caregivers and professional caregivers. The fact that the government is taking a day to discuss aging issues is progress, but of course, legislative action and government funding is ultimately what is needed.

If you catch any of the conference, share your thoughts below.

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Grief, relief and regret

As anyone knows who has lost a loved one, your grief doesn’t always progress through the designated stages like it’s described in books. Many of these self-help manuals make it clear that there is no one correct path, but it’s still something you have to experience for yourself to understand.

To all of you who left lovely comments, thank you so much. It does help to know you are not alone.

The first few days after my mother’s death were fueled by an adrenaline rush, to power through and focus on completing the necessary tasks. My goal was to get home as soon as possible.

Mom was a jokester, and would want to be remembered with smiles and laughter, not tears.

Mom was a jokester, and would want to be remembered with smiles and laughter, not tears.

I returned home and took a few days off from work to get settled in and recharge my batteries. I spent a lot of time receiving “purr therapy” from the cats. I went on walks. I got a massage.

Then I returned to work and the fast pace of my daily duties left me little time for reflection.

So here I am, 10 days after my mom’s death, and more than grief or sadness, I’ve experienced moments of relief and regret.

There is a sense of relief at how quiet my phone is now. Over the last year or so, I had talked to Mom daily on the phone, and over the last few months, she was calling me multiple times per day sometimes, usually to remark about her pain or lack of effective medication. I began to dread seeing her face when it would pop up on my phone, signaling a call from her.

Mom was about the only person to call me on the phone. (I prefer written communication whenever possible.) My battery has dipped low a couple of times, but I wasn’t frantic about making sure I was available by phone because at this moment, for the first time in several years, I am not managing the care of an ailing parent. There is relief in not feeling like I’m on call 24/7.

The regrets pop up in scenes played out from the last month, when I was taking care of Mom. I think what I can take away from these flashbacks is to not get so lost in the necessary caregiving tasks that you forget the simple things, like trying to make it possible for a loved one to enjoy a moment basking in the sunlight, or having a spoon of ice cream. There may be risks involved in trying to make a dying person happy, but looking back, they are risks I wish I had taken.

What lessons have you learned from grieving for a loved one?

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My mother can finally rest in peace

My mother died Thursday morning.

It was a tough last few weeks, and the last hours were frankly brutal.

I can only hope she wasn’t in as much discomfort as she seemed, despite being given copious medications for pain and anxiety.

Mom loved her time in the Navy.

Mom loved her time in the Navy.

The hospice nurses and myself kept assuring Mom that it was ok to let go when she was ready. I felt like there was some internal struggle going on in there, despite the fact that she told me repeatedly that she was ready to go and was not afraid of death. She certainly did not want to linger in the state she did, non-responsive, devoid of her lively and happy personality, unable to eat or drink, and completely dependent upon me and the nurses for every task of living.

Maybe Mom’s spirit was just fighting with her stubborn body, and that determined heart of hers. The hospice nurses were quite surprised that Mom continued to live, considering the state of the rest of her body, but her heart and vital signs continued to be good. I was afraid, for her sake and mine, that it would continue to beat strong for much longer than it did. I was at her bedside when she drew her last breath, and I felt her heart beat slow, weaken and then come to a complete stop.

As you loyal followers know, this blog exists in part over guilt I had about my dad’s death, and how I wasn’t present when he died. I know being here to take care of my mom, and being present for her passing was the right thing to do.

But of course, there is a high price to pay on a psychic level by experiencing something so intense as a loved one dying. There are things I wish I hadn’t seen, tasks I wish I didn’t have to do. Time will no doubt provide a different perspective on the experience.

The important thing for now is that Mom was well-taken care of and she did not die alone.

As for what was beyond this life, Mom often said that, “It’s a good place and it’s a right place.”

I hope she’s right.

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