This is the final day of National Blog Post Month and I met my goal of posting a blog a day. It’s been difficult at times to find something meaningful to share with you. Not that I don’t have anything to say, there is so much more to our story I am confident I can write about caregiving for many years to come. The sometimes difficult part is to be inspired on any given day to the degree that will honor all that you do.
This weekend two of my youngest granddaughters were here over night. They ran me ragged and I loved every minute of it. They just left with their Mom. I knew it would be exhausting but I want to spend as much time with them as possible while they are little and I am still able to hold them on my lap and tell them stories. One of the things I treasure most about these visits is the hugs. Tiny arms wrapped around me always bring me a sense of peace and an outpouring of love. It doesn’ matter how young or old we are, a hug is one of the greatest gifts we have to offer.
Hug your loved one today. You will both be enriched by it.
Thinking he didn’t hear me I told him again. “11:00 in the morning.”
Thirty seconds later – “What time is it?”
I sighed and turned down the sound on the TV and repeated the time once more.
Thirty seconds later – “What time is it.”
Then I knew. He’s mind was stuck in a loop. Before I understood what was happening I would get frustrated and angry with him. He would go on like that for hours. Why the hell did he do it? Didn’t he know it was annoying as hell? I was convinced he did it on purpose in order to get attention or to get back at me for controlling him as he often accused me of doing.
Then I learned more about dementia and how the brain works. He wasn’t doing it on purpose. He could no more stop repeating himself than a scratched old record album could stop from skipping when the needle reached a flawed groove. (If you’re too young to understand that reference, ask a baby boomer, he or she will explain it to you.)
Once I understood what was happening I was able to figure out what to do. I had to move his thoughts past the flaw in the groove so they could move on to the next section.
“What time is it?”
“It’s almost time for lunch. Are you hungry?”
“No. What time is it?”
“It’s time to wash your face. Here is a warm cloth.”
The distraction helped for few minutes and then he asked again, “What time is it?”
“It’s time to fold these towels. Will you help me?”
“Yes. I have to do something sometime. It’s not good to sit and loaf all day.”
A few minutes pass in blessed silence as he folds the towels and I take them an unfold them to keep him occupied.
And then it happened. He looked up from his work and said, “My mother, she washed clothes on Monday. Monday was wash day.”
As he folded all the towels one more time he began to relate another memory of his youth. The needle had moved on and the result was truly music to my ears.
Note: It may take a few moments and some creative answers to move your loved one out of the loop but if you keep trying it will work and cut the time you both have to deal with to minutes instead of hours.
Does your loved one get stuck in a loop asking the same question or saying the same thing over and over? How do you handle it? I’d love to hear from you. Post your response in the comment block below.
The face in the mirror evolved as you did. When you came to live with us I gazed on eyes full of hope. In my care you would do well. When you needed anything, I would provide it. We would share our stories and laugh or cry when feelings overcame us in the telling. For a time we did well.
Everything changed.
The face in the mirror reflected worry lines etched deep into my forehead. What was I doing wrong? Day by day, month by month, you slipped away. Would you know me today? When your memory left me behind, where did you go? And when, if ever, would you be back?
Time passed.
Eyes rimmed in black stared back at me. No sleep. Constant stress. You needed all I had to give and more. What we were to do, the two of us? We were at cross purposes fighting the same battle. You were determined I would not win. Every night I cried.
You are gone.
The face in the mirror is forever changed. In your living and your passing you left your mark on me. All the fear and loss, hope, love and laughter are reflected in my eyes. Every night I pray for you and hope you do the same for me.
Colorful is not the way one would typically describe the life of a caregiver but once my father-in-law, Rodger, came to live with us my days began to revolve around the colors of his life.
Outwardly he appeared to be a drab little wren of a man. All his clothing was either brown or grey, the monotony broken only by one of the muted plaid shirts he saved to wear for an appointment with one of his many doctors. His lined, expressionless face would have been a blank canvas if not for deep brown eyes topped by grey eyebrows so overgrown they rivaled those of the late Andy Rooney. When he spoke there were no colorful sayings to add interest. ‘Just the facts, Ma’am.’ Everything about him seemed designed to blend into the background. At the time I didn’t think to question why he was so determined not to be seen or what he might be doing when he thought I wasn’t looking.
Every day started and ended with a rainbow of colored pills, red, yellow, white, green, blue, pink. Some were taken once a day, others two or three times a day, to treat or control his mental illness, Parkinson’s disease, heart disease, Dysphagia, and various infections that seemed to pop up as often as weeds in summer. In between doses, billowing clouds of vapor from breathing treatments to ease his C.O.P.D. wafted out of his room. He counted out is various medications and filled his pill box weekly and he religiously filled out a mail order form when they began to run low. He knew when it was time for each pill and never failed to take them on time. Or so it seemed.
I should have known what he was doing when the symptoms first appeared but I was still too green to know how devious he could be. Even his doctors were fooled until they day his mind shattered into shards of throbbing suspicion. As I write this I try to imagine what a psychotic break looks like. I picture it as a swirling mass of colors so bright they burn his soul leaving him decimated and his caregiver shrouded in deep, purple guilt.
Eventually I discovered that the anger and resentment I sometimes felt when dealing with the daily stress of life as a caregiver could hide in a fog of grey fatigue or the flashing colors of an aura signifying the onset of a migraine headache causing me to scramble to find what I could to minimize the pain.
Fortunately, not all the colors of caregiving are dark or somber. If they were we couldn’t do it. I treasured the bright blue moments of clarity whenever they appeared. Like the day he told me how he and his brother would roll up the carpets in the farmhouse kitchen, when they were young men living in Italy, in order to dance a tango with girls from the village. Was that a hint of pink pride on his face at the memory of holding a pretty woman in his arms? I basked in the bright yellow sunshine of joy when he gently held his newborn great granddaughter, Ava, for the first time, his eyes full of love for the tiny creature gazing up at him.
Yes, being a caregiver is a very colorful occupation. When Rodger passed away, once the worst of the grieving passed, I realized that the moments we shared, the good and the not so good, would forever be part of the richly colored tapestry of stories being woven by caregivers who tend to their loved ones every day and I am grateful to discover there are places like this where we can share them. What are the colors in your story?
Note: This post first appeared on The Caregiver Space in 2013 under the title, 50 Shades of Caregiving. I am honored to be a guest blogger for them in addition to writing here as The Imperect Caregiver. You can also find caregiver blog postsby me on AgingCare.com
What if it happens to me? I’m scared. I know too much. I’ve seen the deterioration. I’ve heard the rants and the accusations.
“She’s poisoning me. She never gives me any food. I’m a prisoner here.”
When I wake in the middle of the night and get up to pee will an alarm start shrieking, scaring me so I wet my pants? I don’t want someone else to bathe me. I can’t bear the thought of anyone seeing me at an advanced age, withered and naked. I’ll probably fight, kicking and screaming, if they try.
What about all those pills? What will they do to me? Drug interactions can make things much worse. Remember, I know too much. I’ve seen it. I won’t want to take them.
If I want to leave my room and walk the halls because I’m tired of sitting for hours will people try to confine me and say, “She wanders all the time?”
Being a caregiver was the hardest thing I ever did. It was also a gift to be there for those who needed me. Still, I’m afraid. What if I’m next?
As Iwrite this, I am grateful that my children say they will be there for me. I don’t want to go to a care facility where the names and faces change daily. I’m not comfortable around strangers now. I can only imagine how much worse it would be then.
I want to know. I need to know. Is Alzheimer’s and dementia hereditary?
***
According to information posted on the Alzheimer’s Association website, the majority of dementia is not inherited. The article written by, Professor Nick Fox, Honorary Consultant Neurologist at the Institute of Neurology in London says in part:
“Many people fear that Alzheimer’s disease in the family may be passed on to children and grandchildren. In the vast majority (99 per cent) of cases, this is not so. Like many conditions, having Alzheimer’s disease in the family does very slightly increase the chance of people in later generations getting the disease.
The most important risk factor for Alzheimer’s disease is age. Because Alzheimer’s disease is so common in people in their late 70s and 80s, having a parent or grandparent with Alzheimer’s disease at this age does not change your risk compared to the rest of the population.”
***
Reading that article and others on the subject, I feel better. But, it also goes on to say,”There are some forms of dementia that are inherited.” As far as I know, there is no indication any of them run in my family. I’m relieved for now but I know every now and and then I’ll begin to wonder …
When we hold our infants in our arms we are filled with awe and hope for the future. We envision a life of promises fulfilled. We never picture them feeding us, holding our hand to keep us from falling, or changing our under things. I didn’t want to type the word diapers. The thought of losing my dignity to such a degree is truly fearsome. In my mind I heard the words, “It’s enough to scare the pants off me.” The irony makes me shudder and chuckle at the same time.
The caregiver and the cared for are locked in a fearsome intimacy. I don’t know where this quote came from. If I did I would give credit here. What I do know is, whoever penned those five simple words shared a devastating truth.
Caregivers, you know who I mean. The people who call to question and criticize what you do and how you do it. The family members who drop by once or twice a year and spend an hour or so before heading out to a restaurant for dinner or leaving on a fabulous vacation. The ones who can’t help you because seeing Mom or Dad like that is too hard for them.
These are the same people who say, “Please let us know what we can do to help,” but are never available when you need someone to take over for a day or two so you can get some much-needed rest.
We have all dealt with the splinters. If we don’t pick them out in time the wound caused by their careless dismissal of us and our loved one festers and makes life even more difficult for us.
I hope when that happens you will remember this funny little cartoon and smile and feel a bit better, even if only for a moment. You are not alone.
November is a big month for writers. It’s time for NaBloPoMo and NaNoWriMo – National Blog Posting Month where bloggers set a goal to write a post a day in November. For me that’s a big challenge. I try to post once a month but sometimes the days get away from me and it just doesn’t happen. I’m eager to see how this project works out and what effect it will have on my time management going forward.
NaBloPoMo was inspired by NaNoWriMo – National Novel Writing Month wherein writers are challenged to write a novel in the month of November. This annual contest has resulted in many published novels and inspired thousands of writers to complete their work in progress even if they didn’t finish by the end of the month. I wish all the novel writers and bloggers starting this challenge good luck and good writing.
Here I go.
The first time I had a panic attack I thought I was dying. I woke from a restless sleep with my heart racing and a heavy feeling in my chest. Then my fingers began to tingle and before long that sensation moved up my hand and into my arm. At first confused and then terrified by what was happening I woke my husband. Call 911, something is very wrong! As I waited for the ambulance to arrive my heart raced faster and faster and each time the speed increased I became more frightened. Cold sweat poured out of me. I’m having a heart attack!
This can’t be happening. I have too much to do. I can’t do this to my family. How could my husband cope with the loss and care for his father? I was not ready to leave my grown children or my grandchildren. I prayed for the ambulance to arrive in time while Mike paced.
“Your heart is fine, the EMT said after examining me thoroughly. What’s going on in your life that’s causing you so much stress?
Caregivers know the answer to that. Constant vigilance. Sleepless nights for days and weeks on end. Second guessing by family members who aren’t there every day like you are. Loved ones who not only resist but openly fight your efforts to care for them. It all piles up and you take it all in. Swallow it down and start another day. Eventually something has to give and your body sends out an urgent signal. I’m in trouble here. And you are. Left untreated the same stress that leads to panic attacks can result in a heart attack. The good news is there is treatment. The key is to understand what is happening and why.
After that terrible scare I read all I could about what had happened to me. I quickly learned to recognize the onset of a panic attack. When I sensed one coming on I’d go to a quiet room, lie down and take slow deep breaths to calm myself. Over time it became easier and the attacks lessened in intensity and duration. Now they occur rarely and dissipate in minutes. I’m lucky. I can control my panic attacks without medication. For some the attacks are so severe and frequent medical intervention is needed. If that’s the case with you, don’t hesitate to consult your doctor and get treatment. You will feel so much better if you do.
Most of the symptoms of a panic attack are physical, and many times these symptoms are so severe that people think they’re having a heart attack. In fact, many people suffering from panic attacks make repeated trips to the doctor or the emergency room in an attempt to get treatment for what they believe is a life-threatening medical problem. While it’s important to rule out possible medical causes of symptoms such as chest pain, heart palpitations, or difficulty breathing, it’s often panic that is overlooked as a potential cause—not the other way around.
To read more about Bobbi and her experience as a caregiver purchase a copy of her book, Confessions of an Imperfect Caregiver. Blog followers receive a discount when ordering directly.
Anette Dashofy, author of the Zoe Chambers mystery series shares a bit of her caregiver story and how she created a very special character in her book, Lost Legacy, to honor her father. Welcome Annette.
Bobbi Carducci and I met and bonded many years ago in the hospitality suite of a Pennwriters Conference, commiserating about our roles as caregivers—she for her father-in-law and I for my dad. Sisters in the battle to maintain a real life while providing comfort for not-always-cooperative loved ones.
Of course, being writers, we both chose to share our emotions through the printed word. Her book is a lovely memoir. Mine, a work of fiction. Lost Legacy is the second in my Zoe Chambers mystery series.
This book has been a story of my heart, and as thrilled as I was to get the first one published, this one is special. Lost Legacy is dedicated to the memory of my dad, who—like Harry—Pete Adams’ father in the book, suffered from Alzheimer’s. Harry is NOT my dad. My dad’s illness was dark and ugly and complicated with strokes. Dad couldn’t walk without assistance, but didn’t remember, so he fell. Repeatedly. Loss of independence, combined with the ravaging effects on his mind, made him short-tempered and…well…just plain mean at times. He lost his ability to internally edit or use good judgment. He struck out verbally at those he most loved, reducing my mom to tears on more than one occasion.
Could I take such a hideous disease that reduced my strong, take-charge dad into a wheelchair-bound, helpless and angry man and write a fictional character who didn’t make the reader slam the book closed? Could I create a likeable, but realistic character who suffered from Alzheimer’s? There are a lot of readers out there with family members dealing with this or similar dementia ailments, and I knew they would call me out big time if I didn’t get it right.
But I really wanted to create this character of Harry. I’ve been the caregiver daughter who dreamed of running away. Like Pete, my own loving brother had difficulties watching our father deteriorate—though not as badly as Pete! As writers do, I took those relationships and magnified them. Played the what-if game.
Instead of focusing on the darkest parts of my dad’s illness, I used a lot of his more lovable quirks in creating Harry Adams. Spending time with Harry was like having a little bit of my dad around…the part I rememberfondly. His addiction to chocolate milkshakes. The way he called everyone “Sunshine.” His mischievous grin.
I hope I succeeded in creating a real representation of an Alzheimer’s patient and the people around him. I think I did. So far my readers have given me thumbs up for the effort. Harry may have been the biggest challenge of my writing life (so far!), but he’s also become my favorite character. And the one I’m most proud of.
Also, I’m donating a portion of my royalties for Lost Legacy to the Alzheimer’s Association in honor of Dad…and of Harry.
Note: Although Annette was unaware of it when she named him, Harry shares his name with my father, the late Harry Simpson. It seems Annette and I are connected in ways that go beyond the love of writing and I am proud to know her.
I couldn’t resist taking a Facebook quiz that said it would tell me who should play me in a movie about my life. I admit it; I sometimes fantasize about who would be cast in the movie version of the book, Confessions of an Imperfect Caregiver.
However, my first thoughts always go to who would play my father-in-law, Rodger. When I close my eyes I picture Robert Duvall in the part. I see in him the same combination of strength and vulnerability Rodger displayed throughout his life. And, he has the talent to capture the subtle nuances of a mind and body failing as mental illness, dementia, and Parkinson’s disease ravage him. Robert Duvall could portray Rodger’s sly humor during the moment’s he chose to reveal it and the rare tender moments we shared during moments of clarity.
That part was easy. But, I could never decide who should play me. Since I became a caregiver in my 50s no beautiful young ingénues need apply. Meryl Streep and Diane Keaton are possibilities. Since Diane Keaton and Robert Duval have worked together in the past, I think it would be nice to bring them together again. My husband was the first to suggest Meryl Streep. I would be thrilled to have either woman step into my shoes.
The results of the quiz didn’t include either of them. I was quite surprised to see this message:
Breaking News: Julianne Moore will play YOU in the movie version of your life! The announcement went on to say:
“Julianne Moore is known to play humble, likable and somewhat complicated characters and guess what – you fit right in.
You are a likable person, but you are not quite like everyone else. You are always looking for new challenges, new adventures and new experiences, and that’s what puts you aside from the rest of us. You truly have a special and unique soul, and Julianne will do it justice.”
Since all of these women are timeless and amazing, it’s hard for me to choose. All have the talent to portray an imperfect woman who despite her best intentions, makes mistakes that could have devastating consequences for the very person she is trying to save. A woman who has panic attacks and loses her temper, who despite the stress maintains a sense of humor and sometimes can be very creative when rational choices just don’t work. Yes, they can do this. I can see every one of them, at some time in their life, being one of the millions of women who become caregivers for a loved one.
Blog followers and casting directors looking for your next project, who would be your pick to play me in the movie version of Confessions of an Imperfect Caregiver? Who is your pick to play Rodger? And while we’re at it, who should play my wonderful husband and caregiver partner, Michael Carducci?
I don’t want to influence you or limit your choices when it comes to casting Rodger’s or Michael’s part. Please list your suggestions in the following comment box. I look forward to hearing from you.
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The Imperfect Caregiver 
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