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.

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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

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.

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