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.

A Fearsome Intimacy

Caregiving Fearsome Intimacy

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 underthings. I couldn’t type the word diapers. The thought of losing my dignity to such a degree is truly fearsome. In my mind I hear 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 locked in a fearsome intimacy. I don’t know where the quote above came from. If I did I would give credit here. What I do know is those five simple words speak a devastating truth.

 

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.

 

 

What We Have is a Failure to Communicate

failure-to-communicate

You spend hours, days, weeks, months, years, becoming more and more isolated as caregiving takes over your life. Well intentioned friends and family who offered to help in the beginning drop out of your life as they tend to their own families and jobs.  When they do come to visit they see Mom or Dad on their best behavior. Somehow he or she is able to connect with reality long enough to convince visitors they are so much better than they really are.  They may even accuse you of abusing them or robbing them causing distrust and confusion within the family.

If only your visitors could see your parent beg to go home for hours or cower in fear because they no longer know who you are.

Fortunately there are now ways to make that happen and I encourage you to use them especially if your family members are too far away to visit often. They may not be able to come in and relieve you but they might be able to help in other ways once they see how much you are doing every day.

Don’t let distance keep family in the dark. The more they know the better chance you have that someone will step up to help.

Communication is key, no matter how you make it happen. Use any and all resources available to you including one or more of the ones listed below.

I urge you to take full advantage of video chatting to share your experiences and make it far more difficult for others to say, “I wish I had known how hard it was. I would have been there for you.”

Listed below are a number of resources to keep communication open.

Nucleus

Skype,

FaceTime,

Glide,

Tango, etc.

Email

Phone

Facebook

If you are using, or have used, any of the resources listed above to reach out to family and friends please share your thoughts on how well it works or worked for you. I look forward to hearing from you.

 

A Teen Encourages Others to Help

The following is a guest post by  Minaal Khan, an 11th grade student at John Champe High School in Aldie, VA.

As teenagers in the age of technology, we need to be less materialistic and spend time with people as well as our favorite devices. People are who make the world a better place and who provide beneficial social interactions. We need to stop ignoring people and start using devices less often. Helping people can make you a better, worldlier person. This will make you truly appreciate the world. Hearing about someone else’s life can inspire you and may even change you for the better.

Teenagers need to start giving back to the community and helping others. We are at the age that will define us as adults. If we do not start giving back now, we will never do it as adults. We need to be thankful that we are healthy and appreciate what the generation before us has done to ensure that we are raised properly. They left us a great world that we can make even better by spreading kindness and selflessness. Everyone deserves to have someone help them when they are in need, so we should be kind and care for people who may have neurocognitive disease.

Caring for people with Alzheimer’s helps you feel accomplished as you do something good in the world. It also reassures the person you were caring for that there is hope and kindness left in our world when so often all we see on the news is violence.

Caregiving is an act of kindness that the other person will remember and builds self-esteem. It does not require you to sacrifice several hours, you can also spend time with your friends or family.

Helping someone who has Alzheimer’s will also help the family of the person who has Alzheimer’s because they will know that someone is taking care of their loved one. They will not have to worry about finding a reliable caretaker which increases the cost of care.

Caregiving is extremely rewarding and can change the lives of many people, the caregiver, the person with Alzheimer’s, and the family of the person with Alzheimer’s. It also gives you a sense of accomplishment because you have made a change in someone’s life. We need to help others as much as we can.

 

4 Reasons People with Dementia Hate to Shower & How to Fix It

shower-head

1. You asked: When asked a yes or no question a person with dementia may not understand the question and automatically answer with a resounding NO to avoid agreeing to anything they may not want.

Why? Because it’s one of the first words we learn when beginning to speak. It’s short and powerful and it works if we repeat it often enough. Instead of asking, get everything ready and then gently say, “Your shower is ready,” and lead him or her into the room.

2. Room Temperature: When preparing the room make sure it is very warm. It may feel like a sauna to you but to someone who is frail it could still feel chilly. Make sure the water is warm also but make sure it isn’t hot. Test it as you would before bathing an infant. Have plenty of soft, warm towels at hand. Warming them in the dryer just before shower time is a good idea.

3. Modesty: Most of us have some body issues and are reluctant to have others see us naked and this could be especially true of an elderly parent being bathed by one of their children.  It’s perfectly okay to wrap a towel around their chest and one over their lap and bathe them through the towel. They maintain their dignity, stay warm, and get clean all at the same time.

4. It’s Scary: Imagine sitting naked on an uncomfortable seat in a little room with sounds echoing around you. You’re not sure why you are, how you got there, or what’s going to happen. Then all of a sudden something starts falling out of the sky and hitting you on your head, chest or back.

Dementia affects vision as well as memory and other functions. The person in your care cannot see the water falling from the shower head. It’s confusing and frightening and they want nothing to do with it. (Note:  The next time you shower pay attention to the water flowing from the shower head. How well can you see it?)

To help alleviate the fear and confusion use a hand- held shower head and start at their feet, moving very slowly up the legs, talking softly as you go along, have their favorite music playing if you can. Let them wash themselves as much as possible.

When bathing is complete wrap them in warm towels even before leaving the shower and remain in the warm room until they are complete dry and clothed.

Will this work all the time for everyone? Probably not. There will come a time when showers and baths are no longer possible and bed baths are the best you can do. Until then,  try some of these suggestions they may make things just a little bit easier for both of you.

Welcome the Ghost of Christmas Past

Christmas is often a time of sorrow for families of those with any of the many forms of dementia. Often family and friends have stopped calling or visiting. Family relationships break down as one person provides daily care.

You may decide it’s just not worth it and spend the day trying to block out memories of happier times. I get it. But consider what may happen if you embrace the past for a few moments. You may be surprised by what your loved one remembers.

Welcome the Ghost of Christmas Past. Forget about putting up a tree if you don’t feel up to it. Don’t bother with a special meal unless someone delivers it to your door hot and ready to serve. Instead open the old albums and put out the oldest, most treasured ornaments. Play all the old Christmas carols. Cry for what is lost. Cry until the tears no longer come. Then, if you can, welcome the ghost of Christmas Past. Allow him to illuminate the memories you most treasure and share them with those in your care.

The image below is from Disney’s, A Christmas Carol, where the Ghost of Christmas Past appears as a candle illuminating events that formed the person Scrooge became.

ghost_of_christmas_past

Push aside the present and feel the love you shared on all the happy times you shared if not for the entire day, at least for a moment. The love and laughter you shared may be the most precious gift you receive this season.

One of my favorite treasured Christmas decorations from childhood is also a candle.

single-choir-boy-candle

This little guy, once part of a set of five, appeared in our home a few days before Christmas when I was eight years old. Upon our mothers passing in 2002 my sister, three brothers, and I each took one. Mine is now lopsided. His face is grimy from years of being packed away in newspaper, and his robe has a chip in it from being dropped a time or two. Despite the abuse he has endured over the years, he is far more precious than the thirty-five cents stamped on the sticker that still clings precariously to his underside tells us Mother paid for him.

If you have a favorite memory of Christmas past shared with the one in your care, feel free to post it in the comment section. I’d love to hear from you.

Five Practical Ways to Help Family With Mesothelioma

A Guest Post by Dani Alexis www.mesotheliomahelp.org

Mesothelioma is a type of cancer that affects the “mesothelium,” a layer of tissue found inside the lungs and lining other organs and areas of the body. Unlike some types of cancer, mesothelioma nearly always has a definable cause, like exposure to asbestos, silica dust, or similar substances.

Although the cause can often be pinpointed, that doesn’t change the reality of the disease or the fact that diagnosis often creates more questions than it answers.  Mesothelioma can leave a person who has it feeling helpless, angry, or afraid – and it can leave caregivers wondering what they can do to help.  Here are five concrete, practical ways you can make a difference.

  • Keep a health log. Mesothelioma is a progressive disease, and every person who has it responds to treatment a little differently. By taking on the task of tracking medications and making brief daily notes about your loved one’s health, you can help your loved one and their doctor spot patterns that will help to determine whether or not a particular treatment is working.
  • Become a good administrator. From keeping track of doctor’s appointments to making sure your loved one’s end-of-life plans are committed to writing, an illness like mesothelioma comes with a lot of paperwork. Spend a little time every day getting acquainted with your loved one’s current treatment plan, their insurance policies, and their estate plans.  Work with them to have yourself added to the list of people with whom their doctor may discuss their care.  Take these steps before you need to, so you’re ready if a crisis occurs.
  • Know your own rights. Millions of U.S. workers are covered by the federal Family and Medical Leave Act (FMLA), which allows them to take up to 12 weeks off work, unpaid, to care for a family member. Many workers also have compensation packages that allow them to take paid or unpaid time to care for a sick family member.  Check to see whether your workplace is covered by FMLA and what your compensation package offers, so you know how much time you have and what you need to do to protect your job and take care of your loved one.
  • Listen. Mesothelioma can be devastating news. The diagnosis often seems to come out of nowhere, and the fact that it can often be traced to a specific event, job, or time period can make the diagnosis seem even more unfair.  The best thing you can do for your loved one is to listen and encourage them to express their feelings. Your loved one may be feeling afraid, anxious, betrayed, angry, or hurt.  They may seem to have accepted the diagnosis one day, only to rage against the unfairness of it the next.  Remind them that their feelings are valid and that it’s okay to talk, cry, or process them in healthy ways, such as through journaling or exercise.
  1. Support yourself as well. It’s tough to be the “on call” person for your loved one all day, every day. Finding time for yourself can seem impossible.  That’s where a support group can help.  By connecting with other caregivers, you gain a place to safely process your feelings, as well as advice and guidance from others who are facing the same challenges you are.  Can’t find a support group for mesothelioma caregivers near you?  Try looking for support groups online or talking to those who provide care for family members with other chronic or serious conditions, such as cerebral palsy.  Even when the conditions are different, many of the tasks of caregiving – and the tips for making that caregiving easier – are the same.

www.mesotheliomahelp.org

If you are a caregiver for someone with mesothelioma, or know someone who is, and you would like a free Caregivers Are Heroes wrist band – send your request along with the complete mailing address including the street name and number, city, state, and zip code to me at bcarducci@comcast.net  (Continental U.S. address only).

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