January 21, 2015 · 8:00 am

Book review: ‘Slow Dancing with a Stranger’

You know you are a caregiver or an Alzheimer’s awareness advocate when books like this appear on your Christmas wish list.

I had read positive reviews of the book, “Slow Dancing with a Stranger” by Meryl Comer, a former television journalist.

Courtesy: MerylComer.com

Courtesy: MerylComer.com

In this raw and honest memoir, Comer attempts to illustrate the “unvarnished reality” of Alzheimer’s while describing her life as the primary caregiver for her husband, a former esteemed NIH scientist who was diagnosed with early-onset Alzheimer’s in his late 50’s. He is still alive, 20 years later. Comer’s mother, who she’s always had a difficult relationship with, also has dementia and is still alive at age 94. The three live together, and a small group of dedicated caregivers work daily shifts to help with the care.

Comer tries placing her loved ones in facilities, but it is important for people to understand that not all Alzheimer’s patients are suitable for facility care, and that in fact, can be essentially “thrown out” if they are deemed a risk to themselves, staff, or other residents. Yet home care brings its own set of challenges, and neither road is an easy one to navigate.

I also think Comer does a good job of demonstrating that some people with Alzheimer’s don’t respond to the more positive therapy methods that are popular nowadays, such as music therapy, exercise, etc. Comer tries everything imaginable to reduce her husband’s anger and anxiety, but nothing seems to work. Comer’s husband has a form of Alzheimer’s that causes violent, physical outbursts, and both Comer’s husband and her mother were extremely manipulative, with her mother calling the police to claim she had been abandoned by her daughter.

I found beauty and awe in Comer’s resilience to take care of her loved ones in spite of all of the setbacks they faced together. Comer has given up her career and essentially her life to take care of her husband and mother. It’s a sacrifice that not everyone could make. To say this is a depressing book would be an understatement, but I hope it will help raise awareness of the debilitating emotional, physical and financial impact of this disease.

100 percent of the proceeds of the book will go towards Alzheimer’s research.

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January 16, 2015 · 8:23 am

What’s important is what was in the middle

I stumbled across this blog via a Facebook post. I’m not a religious person, but this blog post by Rev. Katie Norris is particularly relevant to those of us long-distance caregivers who struggle with guilt.

We should focus on happier times with our loved ones, not the final moments.

We should focus on happier times with our loved ones, not the final moments.

Norris has had to make the decision whether to return home for her mother’s last days multiple times. Dying of course is not a nice and neat affair, and one can be slowly dying for years. Most of us would like to be there when our loved one passes, but Norris points out that we have to accept our lack of control in this situation and that our ideal ending may not happen.

Ultimately, we must focus not on the ending, but the middle, on that time spent with our loved ones during the bulk of our lives.

I thought this was such a simple but profound philosophy. It’s a lesson that really hits home with me, because I have struggled so much with not being there when my father died.

I wanted to pass along the message to those of you who may be struggling with guilt or regret.

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January 11, 2015 · 2:58 pm

The beautiful and ugly world of Alzheimer’s

I read a lot of personal essays written by those who have been impacted by Alzheimer’s, but this one really moved me emotionally. It was published on Huffington Post and titled, “I Never Expected My Mother to Be Diagnosed with Alzheimer’s When I was 26.” Not only does the essay give us a glimpse into how the younger generations are being touched by this disease, it is beautifully written.

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In the essay, Rebecca Emily Darling discusses some of the upsides of her mother’s Alzheimer’s, such as a greater appreciation of ordinary things, and a nicer demeanor. Yet even these “benefits” are tinged with sadness, because they only illuminate how much the disease has changed the personality of her flawed but beloved mother.

The essay by Darling sums up the good and the bad of this disease so eloquently. If you have a chance to read it, let me know what you think.

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January 5, 2015 · 7:44 am

A sweet and simple connection

I watched a video that has been making the rounds on Facebook lately, and I thought it illustrated how we can still reach those in the latter stages of Alzheimer’s, we just have to be flexible in our approach.

Musician Joe Fraley’s mother has Alzheimer’s, and back in October, before she was moved to assisted living, Fraley recorded a video of him and his Mom sitting on the porch while he strummed a guitar and sang.

Clearly, the woman is confused and asks poignant questions like “Who are we?” Fraley’s approach is refreshing because he keeps things light and conversational, while still addressing her concerns and not being dismissive. The woman responds to the music, and you can see how it lights up her face, even if it is just temporarily.

Not only is it important for those with Alzheimer’s to still connect with their family members in small but meaningful ways like this, I believe it is equally important for the family caregivers. While the recorded moment is still tinged with sadness, Fraley was able to reach his mother through the cloud of dementia by their mutual love of music, and that is a memory to cherish.

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December 31, 2014 · 9:28 am

Hopes for a new year

It’s that time of year where we analyze the current year ending, and create new goals for the next year.

I’ve never been big on making resolutions but the start of a new year does give us all a good opportunity to introduce new goals. Of course, as caregivers there are many things beyond our control, so those fall into the hoping and wishing category.

2014 has not been a bad year for me. I finally was able to reestablish full-time employment and I’m very happy with my job. The ability to work remotely from wherever I want is a huge burden off of me, in case I do need to leave my home city for an extended period to take care of Mom again.

mom-joy-nov2014

I had a story published in “Chicken Soup for the Soul: Living with Alzheimer’s and Other Dementias.” That was an exciting accomplishment.

I was able to begin chipping away the debt I accrued while taking care of Mom. While I haven’t reduced my debt to nearly the point I want to, I know it can’t happen overnight, and am thankful that my job allows me to pay off significant chunks each month. Slowly but surely on this goal is the only way I will succeed. (Or winning the lottery, haha.)

Mom’s health has been a bit of a roller coaster ride this year, especially the last half of the year. Today she is supposed to finally meet with the surgeon, but there is a snowstorm in her area and I don’t know if she will make the appointment. The delays in securing a diagnosis is frustrating. I can only hope that we figure out what is wrong and get her the treatment she needs soon. I’ve helped stabilize her financial situation by picking up most of her bills to pay myself, but I hope she can continue to live independently so we can avoid another financial crisis.

I’m taking a writing class in January, a weekend workshop kind of thing. I’m finally starting to pull together a plan for a book idea. We’ll see what comes of it, but it is definitely a goal of mine this year to continue writing, and that includes blogging!

Thanks to all of you who read my posts and take the time to comment, it is greatly appreciated. I hope 2015 is good to you and your family.

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December 25, 2014 · 4:38 pm

Christmas doesn’t have to be perfect

I know many of you out there are celebrating a less-than-ideal holiday. You may be visiting your loved ones in a care center. They may not be able to communicate with family anymore.

Or like me, you may be grieving the loss of a loved one today.

mom-dad-xmas

But as many of you have illustrated on your own blogs, wallowing in pity will not make the holiday season any brighter. While it takes effort, we must find ways to appreciate what we do have, and cherish the happy memories with those who have departed.

No day is perfect, just like no person is perfect. But every day and every person is special, if we only take the time to seek out the good.

Merry Christmas and Happy Holidays to you and your family.

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December 20, 2014 · 5:26 pm

Dad, three years gone from this world

Today is rainy, chilly and dreary, just like three years ago when I received the dreaded phone call that my father had died.

Everything else is so much different.

One of my favorite photos.

One of my favorite photos.

Little did I know at the time that I had taken the first of many significant dips on the roller coaster of life. Mom, always the picture of health, was diagnosed with stage III colon cancer just seven months after my father’s death. I quit my job to take care of her for the next six months. It would be another year before I secured any regular work.

I discovered that freelancing is best approached when you have time to plan and build clients, not for a sudden source of steady income. I learned that being a really good employee doesn’t get you very far in this job market.

And perhaps most importantly, I immersed myself in the world of Alzheimer’s activism, and learned so much from the stories I read.

So I am definitely a different person than the one who answered that phone in the middle of the newsroom on December 20, 2011. I hope I’m a bit wiser, and a lot more compassionate.

Tonight I will light a candle, toast Dad’s spirit with a glass of Irish whiskey and remember his wonderful singing voice, realizing that one can smile and mourn at the same time.

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December 17, 2014 · 8:49 am

‘Andrew Jenks, Room 335’ a moving documentary

I was a bit skeptical when I stumbled upon this film on Netflix. A documentary made several years ago by some college kid who takes up residence in an old folks home for a month? How insightful and meaningful could it be? Well, happily I was wrong, and I found this simple yet powerful documentary, Andrew Jenks, Room 335 quite touching.

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As anyone knows who has ever stepped foot inside a senior care facility before, there are so many wonderful characters just waiting to have their stories told. I saw bits of my mom and others I have known and lost in the residents at Harbor Place. I’m sure you will too.

There are a couple of big takeaways from the film. First, just because people are old or in poor health doesn’t mean they have lost their personalities or their humanity. They should not be forgotten or shut away by society. That brings me to the other big message in the film, which is that seniors are lonely. I know this all too well with my mom. It was sweet yet sad how excited the residents were to have this young man to talk to for a month. That need for human connection is strong and so many of these residents are just wasting away, their insights and memories dying with them.

So definitely worth a watch (keep the tissues handy!) It is nice to see the younger generation take an interest in the welfare of the older generations, I hope that is a trend that continues to grow.

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December 10, 2014 · 7:40 am

Time makes some wounds less painful

Here is a realist take on grief. Time does help. Time is like a new layer of skin that develops over a gaping wound. It takes awhile before the wound is covered, and even then, that new protective layer is quite fragile. But if tended to properly, that new layer of skin will completely cover the wound and most people will never know you had an injury. Even if no physical signs remain, you will remember the wound.

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That’s how I feel this year, as I approach the third year anniversary of my father’s death. As I’ve mentioned, I’m back working in the same building as I was on the day he died. All of the same Christmas decorations are back up. I’ve been struck with bouts of wistfulness and flashbacks to that day when I got the call that my father had died. But the black cloud isn’t quite as dark as it was the last couple of years. Of course, nowadays concern for Mom takes up a lot of my thinking time. But still, I know part of this is the natural grieving process.

There is no timetable. For some people, it may take a year, for others several years, and frankly, some people may never escape those black clouds. None of us should be judged by how we grieve. Of course, if we think loved ones are in danger of hurting themselves or others because of the weight of their grief, then action should be taken to intervene and get them help. But the grieving process is very personal. While it may help to read books to know the stages of grief, etc., it truly is one of those things you don’t fully understand until you experience it.

How have you handled your grief over the loss of a loved one? Has the passage of time helped?

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December 3, 2014 · 10:21 pm

“Who helps the person that’s the helper?”

Very moving. The focus is more on professional caregivers, social workers, etc. but can still apply to any of us dealing with family trauma and grief on a long-term basis.

caregivingwithcourage's avatarCaregiving With Courage

Just watched this trailer and was struck by how applicable it is to so many parts of my experience. Not only am I a part-time caregiver for a loved one, I am a social worker who listens to the heartbreaking and distressful stories of, essentially strangers, day after day.

Secondary trauma is something that, in my opinion, has not been looked at as closely or studied as in-depth as other forms of trauma, but can cause lasting effects nonetheless (if not dealt with in an appropriate manner).

There are so many topics that need to be explored more in-depth, secondary trauma, compassion fatigue, contagious stress, all of which I intend to explore more this month! Stay tuned, learn with me. I am not an expert on these topics by any means, but I will share with you my research on what these things mean for the caregiver and how to…

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