A Precious Memory

The following is an excerpt from my book, Confessions of An Imperfect Caregiver. It seems fitting to share this moment as Easter approaches.

“The aroma of pasta sauce and roasting chicken wafted through the house. A beautiful apple pie rested on the kitchen counter. I hummed “Here Comes Peter Cotton Tail” as I adjusted my best tablecloth before going to the china cabinet and getting three place settings, consisting of dinner plate, salad plate, and bread plate. After carefully placing the proper utensils next to the plates, I added a water glass and a delicate wine goblet and stepped back to admire the table. Mike had folded cloth napkins into delicate winged swans to be placed in the center of the dinner plates. Silver candlesticks flanked a beautiful flower arrangement that complimented the decor perfectly. Just before calling the men to dinner, I’d cut the pie and placed three pieces on matching dessert plates, ready to be served when the time came.

Rodger had looked pleased when Mike and I went into his sitting room and presented him with his Easter basket that morning.

“Happy Easter,” we greeted him.

“Happy Easter,” he replied. “What’s all this?”

“It’s some Easter candy to sweeten your day,” I said.

“They don’t have Easter candy in the old country. Easter is a religious day. Everybody goes to church,” Rodger said.

“It’s a religious holiday for people here too,” I explained. “But we also have the traditional Easter baskets.”

“Do I have to go to church?” he asked. “I only go to church when somebody marries or dies.”

“You don’t have to go to church if you don’t want to,” Mike assured him. “Enjoy your candy and join us later for dinner in the dining room. Bobbi is making a special dinner.”

“Who’s coming? Do I have to take a shower?”

“No one is coming. It will be the three of us. But it would be nice if you took a shower. You’ll be nice and clean for dinner.”

“I don’t need to take a shower to eat. I don’t need special food. I eat anything”

“We know you’ll eat anything,” I said. “But on holidays we like to have a special meal. And you don’t have to take a shower today but you will have to take one soon. You need it. I’ll call you when dinner’s ready.”

I could tell he was curious about what was going on when he came down to go for a walk and saw the table set in the dining room. He didn’t say anything but spent several minutes looking at it on his way out.
Even the weather was cooperating. The air was warm and the sun was shining. After his walk, Rodger sat on his bench in the front yard and watched the birds flitting between the two feeders hanging from the tree he watched grow from the day we moved in.

He had become a fixture in the neighborhood, taking his three daily walks. He knew when people were moving in and when a house was listed for sale. He kept track of who had dogs and if they barked when he passed by or not. He always let me know when anyone planted something new in their yard and when the Christmas decorations went up. He rarely spoke to anyone, but he knew who lived where and could tell if they changed their routine in any way.

Despite his earlier protest, when I called the men to dinner, Rodger arrived freshly showered and shaved, wearing clean clothes and a shy smile.

“Sit here, Dad,” Mike said as he pulled out the chair at the head of the table.

“Me, here?” he asked.

“Yes, you’re the guest of honor today.”

“Guest of honor. I’m not a guest of honor. I’m not special.”

“You are to us,” Mike and I said at the same time.

Rodger didn’t speak as he filled his dish with chicken and pasta. Nor did he say anything when I passed him a plate of salad and offered him some toasted garlic bread from the napkin-covered serving dish.

“Before we eat, let’s have a toast. Your wine glass has sparkling grape juice so you can drink too,” Mike told his father. “Happy Easter,” he said, raising his glass. “And to Rodger,” he added.

I lifted my glass to my father-in-law and repeated Mike’s toast.

“To Rodger. We’re so pleased you joined us to celebrate today. You look very nice.”

“Thank you,” he said. Then he lifted his fork and began to eat.

Everyone was quiet for several minutes, each lost in thought and enjoying the meal. When Rodger broke the silence and began to speak, Mike and I were stunned to see tears in his eyes.

“I never thought I’d have a meal like this, in a place like this. Everything is beautiful. The food, the dishes, flowers and candles, everything. I feel like a big shot.”

Dabbing at this eyes with his napkin, he looked around the room pointing to the delicately carved chairs and the gleaming china cabinets. He took a few moments to gaze at the framed print hanging on the wall. “Dinner at the Ritz,” it’s called. In it is depicted a group of Victorian ladies dining in their finery at flower-laden tables on a summer afternoon.

“Beautiful ladies,” he said. “Everything is nice. I never thought I’d have anything like this. I can’t believe I’m going to die here. I was born in a big house, and I’m going to die in a big house. Thank you.”

We didn’t know what to say. We had never seen him so touched by anything. We didn’t know he could be moved like that. We were grateful and humbled at the same time. Whatever happened in the future, no matter how hard things got, we’d always have this moment with him.”

As time passed and Rodger became more and more ill, I clung to the beauty of that day. That Easter dinner is one of the many moments that convinced me that, despite the ravages of his illnesses, he was still in there somewhere and he appreciated those moments as much as I did.

 

 

I Wish I Knew Then What I Know Now

When I became a caregiver for my father-in-law with dementia I didn’t know how hard it would be, how long it go on, or how much it would change me. I learned a great deal in those seven years. The most important of which is, I am not an expert in this. There are no experts. I call what I did, creative problem solving on the run. Sometimes what I came up with worked, like the day I sang off key to get him to put his seatbelt on. Sometimes they didn’t, like the many times I tried to reason with him before I learned that his reality was the one I had to deal with and I had go there with him.

What do you wish you knew before you became a caregiver?

What is the most important thing you have learned so far?

I’d love to hear from you. Your answers may help someone.

Touching Words From A Reader

The following is an excerpt from a letter that appeared in my email yesterday. 

Your book is beautifully and courageously written. Your honesty about your own limitations (real or perceived) is human and refreshing and relatable. Your voice of advocacy for patients and families in what sometimes feels like a battle with healthcare professionals is a strong rallying cry and a reminder that in the struggle of priorities, loved ones are ultimately the only advocates whose motives are completely unfettered. You are able to weave in humor where appropriate, and to me that is a reminder that the survivors still have to survive and find a way to cope with change, loss and pain via a means other than tears (especially in retrospect). I laughed and cried shamelessly for the duration, rereading some paragraphs in the final chapters to compensate for my teary, blurry vision. Thank you for this book. I will post the most positive review on Smashwords that I am able. I also have already recommended it to all of my family who suffered the loss of my father by my side.

J.D.

To hear from a caregiver that my words touched him in such a positive way is a gift beyond measure. I hoped it might happen during the days and weeks I relived our story. I am grateful to learn it came true for J.D. Caregivers you are not alone in your actions or your feelings as you do so much for others. Blessed be.

40 Days and 40 Nights

lent

Lent is a time when many of us give up something we enjoy or commit to serving others for the 40 days and 40 nights leading up to Easter. Every time I reflected on what to do this Lenten season images of the many caregivers I meet and hear from kept coming to mind.

I saw you skipping meals and going without sleep while doing all you can to keep the one in your care fed and safe from harm.  I watched as you hoped and prayed for a few good moments in a chaotic day so you could take a shower or go to the bathroom.

For seven years as a caregiver for my father-in-law, Rodger, I did what you do. Lived what you are living not knowing how long it would last and how much it would change me. It is because I know how hard this is, how much you give up, and how dedicated to service you are that I commit to writing a post to support caregivers every day for the next 40 days.

Know that every day, not only at this time of the year, I pray for you and give thanks that there are so many of you willing to do so much for others. Blessed be.

 

 

 

 

Get Enough Rest, Really People?

caregiver-stress

Tips on how to recognize and cope with caregiver stress appear on almost every caregiver website, blog, and column. Too bad none of the advice works.

Click on the link below to learn why.

Why Caregivers Ignore All That Good Advice About Dealing with Stress and What You Can REALLY do to help.

 

 

A Caregiver Valentine’s Day

be-mineIn how many little ways did you and your spouse share the meaning of those words? Not only on Valentine’s Day but while living each day together.

Memories swell and it hurts when on this day nothing anyone can do or say will ease the pain of what these terrible diseases have taken from you.

Unfortunately, what may help him or her may very well make it more difficult for you. Dementia takes our loves ones back in time. They cannot enter our world. We must go into theirs if we hope to connect.

Here are some simple things to try in order to do that:

  • Play your song. The one you danced to when dating, or the one you chose together on a special day together.
  • Bring out keepsakes you collected on trips over the years.
  • If you have any homemade cards your children or grandchildren made, set them out where they are in easy line of sight.
  • Call him or her by the silly special name you used in the past.

Simply say,” I love you Valentine. Be Mine.”

If all of this advice is too painful, I understand. Ignore the whole thing and be kind to yourself. If you feel like venting, you can always do it here. I understand. Sometimes nothing works and all we can do is let our feelings out and start over again tomorrow as the living embodiment of lasting love.

How Many Hours a Week Do Caregivers Spend Providing Care?

It’s probably a lot more than you think.

exhausted

More

Aging In Home Interview

aging-in-home-pic

Aging in Home is an online resource for caregivers and seniors.  As caregivers we need all the help we can get and I am pleased to have been interviewed for their site.  Click on the link below to read the full interview and learn a bit more about The Imperfect Caregiver.

http://bit.ly/2lfVZKO

5 Practical Ways for Caregivers to Entertain Their Loves Ones

The following is a guest post by Jessica Hegg. Jessica is the content manager at ViveHealth.com.  Interested in all things related to a healthy lifestyle, she works to share valuable information that aims to improve the quality of life for others.

Note from the Imperfect Caregiver: I never had a day as a caregiver that was boring or with nothing to do. However, I did try to find creative ways to occupy my father-in-law when he was still able to accomplish simple tasks, including creating a precious keepsake for his great -granddaughter with my help and that of his home health aide. See photo below.

Jessica writes:

Sometimes it seems like there’s nothing to do – especially if you’re a caregiver who is taking care of an elderly loved one. Boredom is dangerous – not only for the elderly, who often are unable to participate in the same activities they loved as a youth – but for caregivers. Boredom can mean easy distraction, and a general decrease in mood, happiness, and satisfaction.

But spending time giving care to a loved one doesn’t have to be boring. There are plenty of activities that both you and your loved one can participate in to have fun together, and help pass the time. Here’s a list of 5 ways you can entertain your loved ones – and yourself.

  1. Reading Aloud

Reading aloud is a fantastic way to connect with your loved one. Whether you read a play, a book – or even just the news, your loved one will appreciate the effort you put into helping them stay current, or entertaining them.

If you have elderly loved ones who have vision issues or are in later stages of dementia or have reading-related disabilities, this is a particularly good choice – they can’t read on their own anymore, and will certainly appreciate updates about the world, or hearing their favorite books read to them.

  1. Enjoying The Outdoors

Enjoying the outdoors doesn’t have to mean strenuous physical activity – though if your loved one is in good enough physical shape, a mild hike or a walk around the park can be a fantastic way to enjoy the outdoors and experience nature.

But really, all you have to do to experience the outdoors is take your loved one out. Even if they’re in a wheelchair or otherwise disabled, enjoying a fresh breeze and the effects of nature can be a great way to pass some time, and allow you to decompress as a caregiver.

  1. Trying A New Hobby

Find a hobby to try with your loved one – or begin learning about their favorite hobbies. For example, if your loved one loves to knit, ask them to teach you the basics of knitting, and then collaborate on a project like a sweater or a scarf.

By helping them remember their favorite hobbies and enjoy their interests, you’ll make your loved one very happy – and maybe learn a useful skill or two in the process!

4. Looking Through Old Photo Albums

We guarantee your loved one has a bunch of old photo albums – and maybe even some slides from way back in the day.

Looking at these photos can be a great activity to pass the time, and to get to reminisce about days gone by with your loved one. You may even learn an interesting new thing or two about their lives – they weren’t always old, and certainly led interesting lives before they settled down to have kids.

You can also offer to digitize these albums or slides – making sure that they never get destroyed or lost, and allowing your loved one to easily view them in the future without digging them up from basements or attics.

5. Collaborating On Crosswords And Puzzles

Entertaining your loved one can be as simple as this. If there’s a crossword in the newspaper, ask them to help you with it. If it’s a word jumble, get them to do it with you. Or if you’re really looking to get into some puzzles, buy some simple jigsaw puzzles – and work your way up to more complex ones.

The process of doing a puzzle is fun and rewarding and can help bolster mental function by using parts of the brain that aren’t always stimulated in everyday life. So beyond just being a fun way to bond and spend time with your loved one, you’re helping them stay young and keep their brains in good shape.

Get Practical

These practical ways to entertain your loved ones – and yourself – are certainly not an extensive list. There are many other resources to turn to if you need a more extensive list, but these easy activities are a great starting point.

rodger-carducci-with-grandaughter-and-great-grandaughter_-all-rights-reserved-by-bobbi-carducci-copyRodger Carducci with his Granddaughter Kelly and Great granddaughter Ava.

Caregivers and Substance Abuse

Being a caregiver is far from easy, especially when the caregiver is responsible for caring for a parent, spouse or family member who is dying from a debilitating illness. Caregivers are often forced to watch their loved ones slowly sink into a deteriorating state of health and to put their own well-being and needs on the backburner to provide care for loved one.

As the population’s average age increases, more and more people who are not health care professionals are required to become primary caregivers for aging and ill loved ones. According to the Mayo Clinic, “informal caregivers provide 80 percent of long-term care in the United States.”

These individuals are almost certain to experience a wide range of emotions, such as anger, frustration, exhaustion and sadness, that can cause a great deal of stress.

According to researchers at the National Institutes of Health, “the caregiver’s burden is complex and complicated by multiple competing priorities. Because caregivers are often faced with multiple concurrent stressful events and extended, unrelenting stress, they may experience negative health effects, mediated in part by immune and autonomic dysregulation.”

As a caregiver’s stress levels go up, they become more susceptible to a number of health issues, including depression and anxiety disorders, compromised physical health and substance use disorders.

Factors That Lead to Caregiver Substance Abuse

Stress and declining mental health are linked to being a caregiver. Caregivers often have no choice in the matter of caring for their loved one and are frequently driven to social isolation and depression.

According to the Family Caregiver Alliance, approximately 25 percent of family caregivers meet the criteria for major depression.

Ninety percent of caregivers say the worry more or feel more stress since beginning to take of their charge, according to the National Alliance for Caregiving.

About 16 percent of caregivers report feeling emotionally strained and 26 percent say that taking care of an individual is emotionally difficult, according to the Family Caregiver Alliance. Approximately 22 percent of caregivers say they are exhausted when they go to sleep at night, and many struggle with their caregiving responsibilities.

For caregivers, drugs and alcohol — including prescription drugs — can be a way to escape stress. Substance abuse becomes a means to cope with their emotions.

According to the Family Caregiver Alliance, “caregivers are shown to have increased alcohol and other substance use.”

More than 51 percent of caregivers report taking more medication as a result of their role as a caregiver. About 10 percent report regularly abusing drugs or alcohol more often, according to the Family Caregiver Alliance.

Tackling Caregiver Substance Abuse

For caregivers, there are steps that can be taken to lighten the pressure they feel and help prevent substance abuse, such as:

  • Assistance: One of the best ways to get out from under the immense stress a caregiver feels is to allow others to help them with their responsibilities. Allowing a friend, family member or neighbor to do simple things such as pick up groceries or cook for the caregiver can make a monumental difference in the amount of stress the caregiver feels.
  • Goals: Caregivers are often asked to handle more responsibility than one person can reasonably take on at one time. Setting realistic daily goals can be a great way to get a hold of the priorities in a caregiver’s life.
  • Find Resources: Many cities and communities have a network of resources to support caregivers in this difficult phase of their lives.
  • Find Peer Support: Support groups for others going through similar situations can be extremely beneficial to caregivers who often feel like they have no one who can relate to what they’re going through.

Sources:

Bevans, M. & Sternberg, E. (2012, January 25). Caregiving Burden, Stress, and Health Effects Among Family Caregivers of Adult Cancer Patients. Retrieved from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3304539/

Family Caregiver Alliance. (n.d.). A Population at Risk. Retrieved from https://www.caregiver.org/caregiver-health

Mayo Clinic. (2015, March 7). Caregiver stress: Tips for taking care of yourself. Retrieved from http://www.mayoclinic.org/healthy-lifestyle/stress-management/in-depth/caregiver-stress/art-20044784

National Alliance for Caregiving. (2006, September). Evercare Study of Caregivers in Decline: A Close-up Look at the Health Risks of Caring for a Loved One. Retrieved from http://www.caregiving.org/data/Caregivers%20in%20Decline%20Study-FINAL-lowres.pdf
Sinha, R. (2008, October). Chronic Stress, Drug Use, and Vulnerability to Addiction. Retrieved from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2732004/

I thank Trey Dyer for this guest post.

About the Author: Trey Dyer is a writer for DrugRehab.com and an advocate for mental health and substance use disorder treatment. When Trey is not writing, he can be found cooking, fishing or playing indoor soccer.

 

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