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.

 

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.

 

 

 

 

Don’t Judge Me – I’m A Caregiver Too

 

sami-green sami-pink-hair

Samantha Guevara speaks out about what it’s like to be young, colorful, and seeking support from other caregivers.

When one thinks of a caregiver, I am not typically what comes to mind. Outwardly, I am young, heavily tattooed, and have gone through every color of bright, unnatural hair. Typically you will find me with a Starbucks cup seemingly surgically attached to my left hand, and my phone never leaving my right. I am part of an often glossed over group that is growing daily. No one wants to think about being 30, and having the responsibilities of a full time care provider for someone with Alzheimer’s or any other terminal disease. But, the truth is; caregivers are getting younger, and we face challenges that are unique to our age group.

The day my grandmother died,  I chose to walk away from a nearly 40k a year management job, and the possibility of having the IVF treatments that would lead to the children I had always so desperately wanted. I chose to leave behind my 3 bedroom bungalow, and trade it in for the uncertainty of caring for someone who has a terminal illness (all with my husband in tow). Within a week, I went from being the boss, to feeling utterly helpless. Every time I took my grandfather to an appointment, the doctors acted like I was not even there. They did not ask me about progress, and all the normal questions caregivers get. I was lucky there was a feigned look of sympathy. When I turned to others, I got the response “It can’t be that bad!”

I tried a support group. That went about as well as baptizing a cat. Several of the women at the first and only group I attended clutched their purses. One asked me if I was looking for the AA meeting. I guess it was the colorful hair, or the arms full of tattoos that threw then for a loop. I stayed for about twenty minutes feeling as if my presence was undesired. I skulked home defeated and poked around for a while trying to figure out where I fit in this equation. Over the next ten months, friends fell away, pregnancies were announced, marriages planned, and although they were moving on; I was standing still. I felt the darkness I imagine every caregiver battles. I held on with both hands to those few who remained. Those who understood.

Finally on Facebook I found a group of wonderful people going through the same thing. From losing memories, to losing basic abilities we all take for granted.  This group was an amazing outlet, but still seemed saturated with people who I had trouble connecting to on a personal level. I posed a question recently looking for caregivers under the age of thirty-five. To my shock, the response was immediate. People my age chiming in. It seems like me, they had also been quietly reading from behind a screen, hoping someone out there was like them. Someone who was supposed to be in their prime, but instead was changing comically oversized diapers and managing moods and meds.

I have a sense of immense relief that there are others like me. The young caregiver community is growing at an alarming rate. We are from all walks of life. Some of us do the amazing task of caring while raising children. Some work full time in order to guarantee their loved one has everything they need. We are a varied group who are battle hardened and amazing. So cheers to all my young caregivers! We are not alone. Together we fight to end this terrible disease.

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

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