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The Long and Winding Road…

~ An Alzheimer's Journey and Beyond

The Long and Winding Road…

Tag Archives: caregiver stress

The Zen of Grown Up Coloring

13 Monday Apr 2015

Posted by Ann Napoletan in Books, Caregiver Burnout, Caregivers, Helpful Resources, Ruminations, Smiles, Tips

≈ 6 Comments

Tags

adult coloring books, caregiver mini respite, caregiver stress, caregiver tips, grown up coloring

colorAs much as the world has come to depend on technology, I sometimes find myself wondering if it’s a blessing or a curse. The benefits gained as a result of computers, smartphones, and tablets are irrefutable; however, these things have also ushered in the era of being connected 24x7x365. Multitasking has practically become an Olympic sport, as it’s done to an increasingly absurd degree.
 

Looking For a Reprieve?

Whether you’re a full-time caregiver or someone who has a full-time career and oversees the care of a loved one, you know what it feels like to be overwhelmed and on the verge of burnout. You yearn for simpler times and wish you could just turn it all off (both figuratively and literally) for a few hours!

My caregiving days are over, but with a full-time-and-then-some career as well as writing, advocacy, and volunteer pursuits on the side, and the usual life/home maintenance activities, things can get dicey. Like most of the rest of the world, I struggle with priorities and balance some days more than others.

Stress has a significant bearing on our overall health and wellness, and caregivers know this better than anyone. So with life moving at such a fast pace, how do we find time for respite when a month in Hawaii or even just a quiet week at home isn’t in the cards?

When all else fails, grab a coloring book!

secretNext time you feel your priorities are askew, your perspective is out of whack, or your brain is just craving a time out, pick up a coloring book!

As unlikely as it sounds, Scottish artist Johanna Basford has sold over 1.4 million copies of her first adult coloring book, Secret Garden. The follow up, Enchanted Forest, appears to be following suit; both books are sold out on Amazon and BN.com!

In this article by Katelyn Murphy, Basford explains that she simply set out to create a coloring book she would enjoy. Noting the carefree nature of children, she wondered if an activity as simple as coloring might bring calm to an otherwise chaotic adult world. To her surprise, thousands of others desperate for a bit of relaxation sans smartphone or other electronic devices decided she was onto something.

Sound interesting? Just Google “Adult Coloring” or do a search on Pinterest and prepare to be amazed! This stress-busting diversion is a piece of cake to get into, requiring very little time and just a few inexpensive materials. Here is a great list of 16 Colouring Books Perfect for Grown-ups, courtesy of BuzzFeed.

My First Grown Up Coloring Experience

In the interest of, ahem, science, I decided I should check this out for myself so I stopped at Barnes & Noble over the weekend and picked up my first “grown up” coloring book. With a dozen or so options to choose from, I selected Peace & Love by Thaneeya McArdle and settled on a set of 12 Rikota Brush Markers (which, by the way, I love!).

IMG_1302The book begins with a few basics on coloring mediums, an explanation of the color wheel, and some beautiful examples of bright designs in rich, vivid, “feel good” tones. Just flipping through the pages had me eager to let my inner artist run wild and sure enough after about an hour I decided that perhaps I’ve been looking for Zen in all the wrong places.

I really enjoyed this time, and focusing on the detailed pattern cleared my mind of its usual pandemonium (no small feat). There’s something about the act of coloring that really is Zen-like, and I think that feeling, combined with the overall sense of joy found in creative pursuits, makes this a great temporary escape from reality.

So to all of my co-workers: should you come by my office tomorrow and find me coloring – worry not! It’s just a few minutes of calm in the midst of a typical frenetic workday, and if you’re extra nice, I might even let you use my markers!

I’d love to hear from others on this topic. What do you think? Have you or would you give coloring a try at this stage in your life? Why or why not? If you’ve already found it to be something you enjoy, tell us about your experience.

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Alzheimer’s Caregiving: Thoughts for the New Year

28 Sunday Dec 2014

Posted by Ann Napoletan in Advocacy and Awareness, Books, Caregiver Burnout, Caregivers, Guilt and Regrets, Helpful Resources, Ruminations, Support system, Tips

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Alzheimer's books, alzheimers, alzheimers caregivers, alzheimers support, caregiver stress, caregiving, dementia, respite care

As 2014New Year 2015 draws to a close, I’ve been thinking a lot about the pressure caregivers feel to be perfect. I see this on a regular basis through my role as co-moderator of the USAgainstAlzheimer’s online support community. Family members find themselves drowning in guilt because they’ve set unreasonably high expectations for themselves; often these expectations are so lofty that no human being could possibly live up to them.

I think an admirable goal for 2015 is to be more gentle with yourself. Pay attention to your self-talk, and when you realize you’re beating yourself up, make a conscious decision to S-T-O-P. I know it’s easier said than done, but try and have faith in the decisions you make, for there is no doubt you are doing the very best you can.

As don Miguel Ruiz reminds us in The Four Agreements, your “best” will be different from day to day, perhaps from hour to hour. When you are sick with a winter cold or exhausted due to lack of sleep or simply at your wit’s end, your best will be different from when you are feeling 100%. That is a fact, and that, my friend, is okay.

Here are four things I hope you’ll consider in the coming year.

  • Join a support group. Check with your local Alzheimer’s Association chapter or look into an online support community like the USAgainstAlzheimer’s Facebook Community. There is immeasurable comfort in simply knowing you aren’t alone. I resisted seeking support during my mom’s illness, and by doing so, I shouldered more on my own than I needed to.
  • If you care for a loved one at home, seek respite. There is no shame in caring for yourself. In fact, it’s a necessity. Your ability to do what’s best for your loved one depends on your own physical, emotional, and mental wellbeing. The National Respite Locator is a wonderful place to start when searching for assistance.
  • Check out Seasons of Caring: Meditations for Alzheimer’s & Dementia Caregivers. This one-of-a-kind book was recently published by ClergyAgainstAlzheimer’s (CA2). Available for only $3.99 on Kindle and less than $15 in a lovely paperback edition, all proceeds benefit CA2 in their work to support caregivers and stop Alzheimer’s. This interfaith book contains over 140 original meditations by 70 leaders in the faith community, care specialists, and caregivers. I’m proud to be a contributor to a book I believe will provide infinite amounts of hope and encouragement to dementia caregivers around the world.
  • Do something to raise awareness or support other caregivers. Whether you simply share an article on social media or write a blog post, participate in your local Walk to End Alzheimer’s, or offer support to a fellow caregiver online or in person, paying it forward will give you a sense of purpose. The single thing that has helped me most in this journey has been reaching out to others.

I wish each and every person who visits this page a blessed 2015. May you find support, comfort, and peace of mind in the coming year.

With love,
Ann

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Caregiver Coping Strategies: Managing Stress in Minutes

19 Thursday Jun 2014

Posted by Ann Napoletan in Caregiver Burnout, Caregivers, Facts & Figures, Guests, Guilt and Regrets, Helpful Resources, Tips

≈ 2 Comments

Tags

alzheimers, caregiver burnout, caregiver stress, caregiver tips, caregiving, dementia, mara botonis, when caring takes courage

I’m extremely pleased to bring you a 3-part series entitled The Dangerous Dance with Stress and Guilt, by Mara Botonis. Mara is the author of “When Caring Takes Courage”, available on amazon.com. She is also the founder of Biography Based Care and is a strong proponent of person-centered care. You can learn more about her work at http://biographybasedcare.com

In Part 1 of the series, Mara shares some surprisingly simple ideas for managing stress. The beauty of these tips is that they don’t require you to leave your house, ask anyone else for help, or spend any money.

Caregiver Coping Strategies Part 1 of 3: Managing Stress in Minutes

by Mara Botonis

We’ve all heard the numbers, we live them. We know that according the Alzheimer’s Association’s latest Facts and Figures Report (2014), nearly 15.5 million family and friends provided 17.7 billion hours of unpaid care to those with Alzheimer’s and other dementias.

We’ve also learned and live the impact of providing that care. The Facts and Figures Report shares that “due to the physical and emotional burden of caregiving, Alzheimer’s and dementia caregivers had $9.3 billion in additional health care costs of their own and nearly 60 percent of Alzheimer’s and dementia caregivers rate the emotional stress of caregiving as high or very high, and more than one-third report symptoms of depression.”

Few realize the day to day reality of caring for someone with Alzheimer’s and dementia and as a result, the suggestions of well-meaning friends and family can sometimes leave us feeling more alone than ever. I don’t know how many times I’ve heard someone suggest to an at-home Alzheimer’s caregiver that they go “take a break” or “get out of the house” and see a movie, get a pedicure or massage. I want to pull this person aside and give them an “instant in-service” on what it means to care for someone that may require such close supervision that you wash your hair only once a week because you feel you can’t risk being in the shower that long. I want them to know what it feels like to jump out of a deep sleep at every little noise because it might mean someone you love is getting into something dangerous or trying to get out of the house. I want to tell them that in later stages of the disease, a person with Alzheimer’s or dementia can require even more supervision around the clock than a newborn baby, because someone with Alzheimer’s is far more mobile and capable of finding trouble without even trying than a little one is in their first few months on earth.

So the question then becomes how can we manage the stress of caregiving? How can we manage it in a way than fits into the reality of our day? How can we make stress relief a more accessible activity that fits into what little free time we have, doesn’t require the participation of others to “cover” care for us and yet still is effective enough to make a difference?

I wholeheartedly believe that caregivers need and should get a more extended break for hours or days, a few weeks if possible each year, not only for their own health, but also to support them in being better caregivers.   I have a whole chapter in my book, “When Caring Takes Courage” that talks about Adult Day Care, Respite or Short Term Stay, Home Health Care and other programs to help caregivers access to quality Alzheimer’s care for their loved one when needed. We know from experience that the kinds of breaks described above are not always possible.

Below are some of the most popular and practical ideas I discovered from other caregivers while doing research for the book. What I liked best about the ideas listed below is that they don’t require you to go anywhere, buy anything or ask anyone else for help, because sometimes these actions are not an option.

1)     Be OK with doing something for you. It is NOT self-indulgent to take a few minutes for yourself. You are the only one that will make sure that it happens and if you don’t think you’re worth it, it will never happen. So first things first, give yourself permission to do something that is just for you.

2)     If you can record and watch favorite TV shows or movies while your loved one is napping or sleeping, great. If not, have your favorite music ready to go for situations where you only have enough time to listen to a favorite song. We can all find just a few minutes, so make them count. Pick songs that bring back memories for you of favorite people, places and times in your life.

3)     Quit “saving” the “good stuff” for guests. We all have the good dishes, guest towels, pretty soaps and sheets. Things that we erroneously think are too good for us to use. Quit it! Stop saving these household treasures for times when others are visiting and enjoy them yourself.   I caught myself dusting the good candles because I had had them so long without ever lighting them that they were starting to fade in color and scent. I finally (and safely) chose a time and place to let myself experience the candles the way they were meant to be used—I enjoyed those few peaceful minutes so much, I vowed never to dust candles again. And, I also started to let myself use the fancy lotion and good perfume.

4)     Once a week, have at least one conversation with someone that is not about Alzheimer’s, caregiving or anything related to the disease process. Talk about whatever you want, for as long or as little time as you have, but it just can’t be about the disease. Best case scenario, you find time to talk to an old friend about happier times, or a neighbor on the way to your mailbox about the weather or your yard.   Again, it doesn’t matter who you talk to, the length of the conversation, or whether that conversation takes place over the phone, online or in person. The important part is that is provides you an opportunity for a virtual verbal break from everything Alzheimer’s.

5)     Plan time with your photographic past. Let yourself look through old photos of happy times. Times before Alzheimer’s entered your world. This is an activity that you can do with your loved one. Get out all of your old photo albums and pull your favorite photos from each to put into one place for easier access and quicker viewing when you need a little boost.

6)     Carve out some alone time.   I know this may be the tricky part. Alone time isn’t always when it’s convenient for us, but it can be created each day if you’re willing to be flexible. Set your watch or alarm to wake up 15 minutes early or stay up 15 minutes after your loved one is safely sleeping (not put to bed, but actually sleeping).   Take advantage of this time to do just one thing for you. A lot of us necessarily pack this precious time period with chores that are easier to do when our loved one is not around because of the nature of the task, but at least once a week, fill this time with something that is just for you.

7)     Consider joining an online community of caregivers. These groups are available 24 hours per day, are there for you when you have time to connect and are going through the very same things that you are. Best of all, if you don’t feel comfortable sharing any information, you can just “listen” and learn additional caregiver coping tips and techniques by reading what others write. Facebook, Alzheimer’s blogs and Alzheimer’s organizations are great places to find these online caregiver groups.

growing-gratitude8)     Reflect on your caregiving successes each day. We spend a big part of our day identifying new ways to cope with a devastating and progressive disease. When you fight a disease that gets worse and worse every day, you can forget to look for what is going better than the day before. Make yourself end each day reviewing what went right, what worked well and what the best were the best parts of your day. There is enough heartache and difficulty around us each day that we don’t need to give it any more attention than it’s due. What we need, is a little more space to realize that every day we get through is a success, every day our loved one was safe and well cared for is a triumph. No amount of stress or sleep deprivation has the power to take that away from you. You did it, you’re doing it and you’re great at it!

_________

What do you look forward to doing when you have a few minutes for yourself? Leave a comment; we’d love to hear from you, and your ideas will likely help someone else!

Stay tuned for Caregiver Coping Strategies Part 2 of 3: Getting away from Guilt and Grief. In this second installment of The Dangerous Dance with Stress and Guilt series, Mara Botonis will discuss the ongoing struggle caregivers face in the battle against our ever present foes – guilt and grief.

Also in the coming weeks, I’ll be giving away a copy of Mara’s wonderful book, “When Caring Takes Courage”.

 

 

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Between 2009 and 2015, Marilyn’s Mighty Memory Makers have raised over $22,000 in the fight to #ENDALZ! To all who have supported us, THANK YOU!!

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