The sentiments and observations in this post are so true. My mom would snap at my dad when dementia first reared its ugly head, then feel terrible about it later. Of course, as caregivers, we all struggle with guilt. That’s why offering support to family caregivers is so important.
Category Archives: Memories
Other people’s memories: “Half a Life”
A memoir that relies heavily upon the memories of a single life-changing event is “Half a Life” by Darin Strauss. I’m sure you’ve read many stories about a tragic car accident that claims the life of an innocent person. While often alcohol and drugs are involved, sometimes these events are truly accidents, with no direct fault assigned to the person behind the wheel. Have you ever wondered what happens to these people? To know, even if you weren’t directly at fault, that your actions claimed the life of another human being … how would you manage to go on with your life carrying that memory? Well, author Darin Strauss knows, because he was the person behind the wheel of the car that struck and killed a classmate who was riding a bicycle.
Strauss had just turned 18, and perhaps the inattention and inexperience of a young driver played roles in the accident. Still, no charges were ever filed and his community, even the deceased classmate’s parents seemed to forgive Strauss. But then the grieving parents decided to sue Strauss for millions of dollars, and the case dragged on for several years, thwarting Strauss from moving on with his life. Even though he saw a therapist, he never worked through his guilt and other feelings surrounding the tragedy. He did what many of us try to do during difficult situations: he put a smile on his face and carried on, suppressing his emotions.
The memory of the accident haunts all facets of his life, from work to friendships to the dating scene. Not only do the lingering memories of the accident have a negative impact on his emotional well-being, they physically make him ill and he has to have stomach surgery before turning 30.
Finally, as he marries and becomes a father, he decides to engage in the best therapy of all for a writer: he would write about the experience in a memoir. The result is a powerful work, and a lesson for all of us trying to process difficult memories. I was very moved by this book and highly recommend it.
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Other people’s memories: “The Glass Castle”
“The Glass Castle” is one of those memoirs that really lives up to all of the hype. The writing manages to be both emotionally devastating and darkly humorous, not an easy task to pull off. If you have not read the book yet, I highly recommend it. Author Jeannette Walls recounts her most unusual childhood and the impact that those experiences have had on her adult life. There is no doubt that she and her siblings experienced abuse and neglect at the hands of their parents who should never have been parents. But there are moments of genuine love buried in the narrative that have you pulling for a happy ending for this ragtag family.
There are many memories that Jeannette Walls describes in exquisite detail that have stuck with me even years after reading the book. But as far as memoirs go, I think Jeannette Walls has earned the title for best first line ever:
I was sitting in a taxi, wondering if I had overdressed for the evening, when I looked out the window and saw Mom rooting through a Dumpster.
Wow. Just wow. How can you not keep reading with an opening like that?
That single memory really sums up the book quite well. Despite a nomadic, chaotic upbringing, the author has found some measure of success in the big city. Yet her parents, often stubbornly refusing help, continue to pop up in her life at the most inconvenient of times, reminding her of the damaged stock she came from. The author bravely reveals so much of herself through writing about the painful memories of her family’s struggles. It is not a book for the faint-hearted, but still, I think one of the lessons to be learned from the book is that there are rewarding moments to be found even in the direst of memories.
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A lesson on perception
I will return to this month’s theme of exploring the memories of others found in my favorite memoirs in my next post. I just have to share an experience that I had this week, because I think it can be useful to all of us in a caregiver role. Most family caregivers have no formal training before they jump right in as a hands-on caregiver. We can’t expect perfection, but I think we tend to beat ourselves up when we shouldn’t. Because caregiving is such an emotionally sensitive role, it is easy to let one small failure ruin one’s day or trigger a major guilt trip.
Stop beating yourself up!
As I mentioned in an earlier post, I had a job interview this week. Despite my confidence in my work abilities, my introverted personality shudders at the thought of talking about myself for an hour in a room full of strangers. No matter how many tips I read and how much I practice and prepare, a good old-fashioned case of the nerves usually attacks me during interviews. It never causes a full-blown disaster, and obviously I’ve managed to stay employed in some form or another since I was 16, but still, I hate this weakness on my part.
So this week, after going over my interview notes I head to the interview. Unfortunately, it was also the coldest morning in Atlanta ever recorded, bottoming out at about 6 degrees F. The area where the interview was to take place was a disaster, due to construction and weather-related snafus. The building had suffered issues due to the weather as well, so I had to enter through an unmarked entrance. All of this left me unsettled to say the least.
There were three interviewers, one who I have worked with a bit previously. I brought a water bottle with me because I get dry mouth in interviews but don’t want to have to navigate a cup in case my hands shake. Well, silly of me to worry about spilling water. I opened the bottle just as the first question was asked and it appeared the bottle was overfilled because it sprayed all over my sweater and pants. Internally I cringed but outwardly I kept that smile pasted on my face and tried to arrange my arms to cover the wet spot.
Afterwards, I definitely felt like it was not my strongest interview. I would have given myself a B-. I felt like I talked too fast and rambled too much, earning the familiar “deer in the headlights” look from the interviewers. I went home feeling depressed, because this was the best job opportunity to come along in awhile. I spent the rest of the day doing a “should have said this” routine in my head.
I sent out thank you emails to all of the interviewers. The guy who I’ve worked with previously replied back and his response blew me away. He said, “You did great in the interview. I wish I could interview like that.”
What???!!!
So that’s my lesson to all of you. How you perceive yourself may be quite different than how others see you. You probably judge yourself much harsher than others do. Be confident that you are doing the best you can and don’t create a failure before the results are even recorded.
For the record, I did get offered one of the positions!
Filed under Awareness & Activism, Memories
The impact of other people’s memories
I want to focus the rest of my January posts on the power that learning of other people’s memories have on us. Over my next posts, I will highlight some of my favorite memoirs, and the vivid memories that really stuck with me long after I finished the book. This time around, I want to talk about the essay featured in the current issue of The Atlantic titled, Surviving Anxiety. It is written by the magazine’s editor, Scott Stossel. It is an excerpt from his upcoming book, which is now on my reading list.
Scott suffers from severe anxiety and several different phobias. I don’t share his extreme level of anxiety, but I do share some of his phobias, like public speaking and vomiting (of which there is a related phobia that I also share, that being vomiting while flying.) He also suffers from digestive issues, which I can certainly sympathize with, as I have experienced numerous digestive issues mainly tied to my gluten intolerance. He writes a compelling and moving account of how these conditions have impacted his life, both negatively and positively. He talks about the pros and cons of the many treatment options he has endured. He bravely shares humiliating episodes where his anxiety or digestive problems rear their ugly heads.
Scott shares a particularly embarrassing bathroom episode that occurred at the Kennedy compound. (The author was writing a book about one of the Kennedy family members and was spending some time there along with a mix of celebrities and dignitaries.) Scott feels his bowels betray him at the worst moment, when he is not near a public restroom. He runs back to the mansion, trying to avoid other guests and secret service members. He makes it to the restroom but then the worst case scenario happens: the toilet backs up and overflows. He is covered in sewage. Talk about bad timing: just across the hallway from the bathroom, guests are gathering for cocktail hour. Scott cleans up as best he can, then has to wrap a dirty towel around his waist (his pants were ruined) and sprint to his second-floor suite. He makes it, but not before encountering JFK Jr. That experience could make anyone with anxiety want to crawl under a rock and never come out.
He also writes about how he went to therapy for his vomiting phobia and his therapist wanted to use exposure therapy to “cure” him. Meaning, she wanted him to take ipecac and deliberately make himself throw up. After at first refusing and putting it off for several sessions, he finally agrees to do it. But after taking the dose, he doesn’t actually throw up, he just retches. It was an agonizing experience that only strengthened his vomiting phobia. (Ironically, after cheering on her client during the exposure therapy, the therapist herself had to go home because she got sick from watching him try to vomit!)
These memories are written in excruciating detail, with every anxious thought and feeling captured. They struck a chord with me and rolled around in my mind for the rest of the day. My takeaways: you never know what is really going on in someone’s head. (Obviously, as editor of a well-known magazine, Scott has been able to manage his anxiety to a certain extent and still be a successful person.) Also, all of these anxious thoughts and feelings and phobias sound crazy if you haven’t experienced them, but from the response the article has received, there are plenty of anxious people out there who completely understand. I am one of them.
What memories from other people have had a meaningful impact on your life?
Preparing for a new year
As the old year winds down, many of us judge ourselves too harshly. Which new year’s resolutions did we fail to keep? What goals did we come up short on meeting?
And then we go and make new resolutions and goals and start the cycle all over again.
I’ve actually been feeling guilty about my shortcomings this year for awhile now. I’ve always been my harshest critic.
I’m disappointed that I haven’t been able to build a more lucrative freelance writing career this year, when I’ve been working from home full-time. I have one main writing gig right now, but it doesn’t pay nearly enough to pay the debt I accrued during Mom’s illness last year. The job market is tough, and I have been humbled and educated. So far, I’ve landed a few interviews but no job offers. I hope to be starting 2014 on a positive note because I have a job interview scheduled for the first week of the new year.
As for writing goals, I’ve pretty much met my goal of writing on this blog a couple of times per week. That includes reposting other people’s blogs, which I want to continue to do in the new year. The first year of The Memories Project, I focused on personal memories. This year I focused on awareness and activism. I’m still working on next year’s theme, but my general goal is to focus even more on the hopes, struggles and successes of other families dealing with dementia.
I think where I’m most disappointed is the novel. After Dad died, I had started working on a novel and had a pretty substantial outline developed. I even pitched the concept at a writer’s conference. Then Mom got sick. The agent I pitched the memoir concept to stated that the memoir market is oversaturated and I might want to consider converting my idea to fiction. I’ve had a whole year now to mull a new concept and I still haven’t fully formed a solid new outline, let alone written a complete novel like I had hoped. In 2014, I hope to complete that outline and begin novel writing in earnest.
On a positive note, I’ve written several poems and short stories and submitted them for publication. Have any of them been published? No, but I did get an anecdote about my mom included in an anthology, so I’m counting that as a publication credit!
I’m also disappointed that I didn’t do more to actively support Alzheimer’s awareness. I missed the local walk and I didn’t volunteer at a local nursing home like I wanted to. I did faithfully write to my congresspersons when Alzheimer’s-related funding bills were on the table. I’m also an active member of the Alzheimer’s Prevention Registry.
What are you most proud of this year and what do you plan on working on next year?
Missing Jim During the Most Wonderful Time of the Year
We can all relate to this sentiment as dementia caregivers. May your family have a peaceful and loving holiday.
I miss Jim so much during Christmas time. I miss our discussions about what to get the kids and our families. I miss sitting next to our tree, looking at the lights and sharing quiet time together. I miss feeling excited, wondering what thoughtful present he placed under the tree. I miss singing songs, watching movies and so much more. Jim still throws out a hum (actually, lots of hums) during Christmas songs, but it isn’t the same. He is here, but he isn’t here.
Ever since I moved out into this great big world on my own, I have sent out cards every December. Except for last year. And the year before. And the two years before that. I haven’t had the energy. I haven’t felt jolly. And what would I put in there? Oh, life is great. We are watching Jim progress with Alzheimer’s and have no idea what…
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Two years since Dad died
It’s hard to believe that today marks the second anniversary of my father’s death. My grief is still pretty raw, yet the person I was back then seems like such a distant memory. So much has happened, both good and bad in the two years since his death that it almost seems like another lifetime.
The weather is dreary, much like the day he died, though at least there’s not a cold rain. In fact, it’s unseasonably mild, making it ideal walking weather. So I took a long walk on my neighborhood’s walking trail, something Dad would have enjoyed. Then I stopped for coffee, another of Dad’s favorite things. I made a donation to the tribute fund for Dad through the Alzheimer’s Association. I’m dedicating the day to writing about Dad and promoting Alzheimer’s awareness. I’m listening to the Bing Crosby channel on Pandora while I write. They are playing so many of Dad’s favorite songs.
One of my favorite photos.
I’ve also started a Tumblr to vent about the rocky road of caregiving. Feel free to check it out, it’s called The Caregiver Vent. Warning, because it is a vent, it is uncensored so occasionally profanity is used. If you’re on Tumblr, let me know.
What I’ve learned over the last couple of years is that it is the effort we make in taking care of our loved ones that matters more than the results. Even the most skilled caregiver in the world cannot clear the confusion of a dementia patient. Those with dementia may not recognize their family caregivers. What it comes down to is you being able to live comfortably with the actions you take as a caregiver. You will make mistakes, we all do. Just try to avoid making poor decisions that will haunt you. And above all, be forgiving. Of others, and of yourself. I’m still working on that last one …
Filed under Awareness & Activism, Memories
The gift of guilt
I’ve been thinking a lot about guilt lately. I guess it started around Thanksgiving time. I reflected on this time last year, and how upset and frankly selfish I was, when I saw that Mom was sick again and knew I was going to be stuck in New Mexico performing Caregiving, Round 2 instead of being home with my family. I think I was just burnt out from the past several months, spending all summer and fall tending to Mom’s needs. By November of last year, I desperately wanted a return to normalcy, but I didn’t get it. It didn’t help that Mom felt lousy and was in a fighting mood.
Fortunately for Mom, she has been able to wash all of these bad memories from her mind. Sometimes I resent her for not remembering all of the ugly things she said or did, but then I realize that it would do me good if I could also cleanse myself of these toxic thoughts. Mom has apologized and says often what an amazing daughter I am and how much she loves me, so our relationship is fine. It’s me that needs fixing now.
I also still harbor guilt about not coming to Mom’s aid sooner, the first time she was sick. I knew almost from the get-go that it was probably cancer. Mom was doing all of the right things, going to the doctors, but she lives in a small town and they were taking their sweet time in determining a diagnosis. In the meantime, I called Mom ever day, great, but she was getting sicker and weaker with every passing day. I had a new job that I wasn’t entirely thrilled with, so I didn’t even have work as an excuse. I just didn’t think I could handle another parent being sick so soon after Dad’s passing, which was just six months prior. So I waited three weeks before finally visiting her. I shudder to think if I had waited a week, even days longer.
If Mom’s cancer had been diagnosed sooner, her surgery may not have been as complex and she probably would have been treated in a hospital near her home versus being transferred over an hour away. I could have stayed at Mom’s condo for free instead of all of those nights in hotel rooms, so I wouldn’t be saddled with so much credit card debt now. Maybe she would have recovered quicker and I would not have had to quit my job (a year later and I still have not been able to find full-time employment again).
But then I think about the positives of the situation. First, if Mom had recovered quicker in the hospital, she may never have developed blood clots. It was an unfortunate complication, but if it hadn’t happened, I would not have taken seriously my 23 & Me genetic testing results that says I have a 60% higher risk of blood clots than the average person. Now if I land in the hospital for an extended amount of time, I will demand preventative measures to reduce my risk. This new found knowledge could potentially save my life! (As an aside, I think it is ridiculous that the FDA is trying to shut down 23 & Me’s genetic testing kits. All they offer is information, which they already indicate may not be 100% accurate. It is up to the user to decide how to proceed with that information.)
Another positive: If Mom had recovered quicker from her first surgery, her oncologist stated she would have started her on chemo. This would have been a disaster. When Mom was just starting to feel better and getting her strength back, she would have been knocked back down again. So far, she is doing well without the harsh followup treatment. (They found three polyps during her colonoscopy exam; results will be in on Monday.)
And yes, I’m still grappling with not being there for Dad during that last month of his life. I know all I can do is share my experiences and try to help others find the light as they make their way through the murky, treacherous swamp that caregivers must wade through.
How do you cope with caregiver’s guilt?
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When My World Became All Things Alzheimer’s » Alzheimer’s Association | Blog
A moving blog post about being a family caregiver for someone with younger-onset Alzheimer’s disease. As this post suggests, we as caregivers must recognize the difficult journey ahead, but we should also try to build something positive while on that hard road.
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The Memories Project 