Over the last 3 years of running and hosting StuffSeniorsNeed.com, I have had the privilege of meeting and interacting with a wide range of caregivers who I now view as both friends and mentors.
Recently I reached out to some of them and asked them to contribute one nugget of wisdom from their experience to a “Best Tips From The Experts” compilation article, that I hope will not only provide value to my readership but will also spread through the readership of these experts and beyond.
I thank them for the time it took to put these nuggets of wisdom together…
“Forgive yourself for not being perfect. We can never be perfect in our caregiving because we are human beings taking care of human beings. When in doubt, try to put yourself in your care receiver’s place. Become educated about his or her issues. Get outside help when needed. Then do the best that you can under your unique circumstances.”
Carol Bradley Bursack
Over the span of two decades author, newspaper columnist and speaker Carol Bradley Bursack cared for a neighbor and six elderly family members.
Because of this experience, Carol created a portable support group – the book “Minding Our Elders: Caregivers Share Their Personal Stories.”
Carol’s sites, www.mindingourelders.com and www.mindingoureldersblogs.com include helpful resources as well as links to direct support.
She is a newspaper columnist and an eldercare consultant who also writes on caregiving and senior issues for several national websites.
“To care for someone with dementia, we may have to let go of our mental construct of who they were to embrace the reality of who they are now. The essential core of the person is the same, and that is where we should strive for connection. This will always require some degree of selfless compassion and empathy, which will result in personal growth through the creative power of love.”
“We must make ourselves vulnerable, open and uncluttered, willing to enter the present moment with no judgments or expectations, except that of finding another person in that space who needs us.”
Daniel C. Potts
Daniel C. Potts, MD, FAAN is a neurologist, author, educator and champion of those with Alzheimer’s disease and other dementias and their caregivers.
Dr. Potts is currently Attending Neurologist at the Tuscaloosa Veterans Affairs Medical Center.
A Fellow of the American Academy of Neurology, he was chosen by the AAN as the 2008 Donald M. Palatucci Advocate of the Year, and has been designated an Architect of Change by Maria Shriver and blogs monthly on her website.
A Pocket Guide for the Alzheimer’s Caregiver (www.alzpocketguide.com), written by Dr. Potts and his wife, Ellen W. Potts, MBA is recommended as a resource by the AAN, the Alzheimer’s Association, and Maria Shriver.
A clinical faculty member at the University of Alabama College of Community Health Sciences and the University of South Alabama College of Medicine, Dr. Potts also holds appointments in the Honors College and the Alabama Research Institute on Aging at The University of Alabama. Dr. Potts is co-convener and medical advisor of the ClergyAgainstAlzheimer’s Network, and is Editor-in Chief of Seasons of Caring, a multi-faith tradition collection of meditations for dementia caregivers.
Founder and President, Cognitive Dynamics Foundation
Medical Director, Dementia Dynamics, LLC
Linked In – http://www.linkedin.com/in/danielcpotts
Twitter – @DanielCPotts
Facebook – https://www.facebook.com/daniel.potts.92372
Blog – http://mariashriver.com/blog/architect/dr-daniel-c-potts/
“When visiting a family member in assisted living, a hospital, or any other type of senior care community, space out your visits and vary the times that you arrive. It is important when evaluating the quality of care to see how things run during different shifts, to get to know the staff working on the weekends and in the evenings.
The same principle applies when considering a care facility: if you show up at 10am on a Monday for a tour, you’re likely to see things very differently than you would on a Saturday afternoon. If time allows, do both.”
Michelle Seitzer
Before becoming a full-time freelance writer, Michelle Seitzer spent 10 years serving in various roles at East Coast assisted living communities and also worked as a public policy coordinator for the Alzheimer’s Association.
Though she has published articles on a range of topics — among them parenting, adoption, beauty and wellness — Seitzer specializes in elder care content, and has written for AARP, Reader’s Digest, HuffPost50, and other related online publications.
She was also a long-distance caregiver for her grandfather, who died of Alzheimer’s in 2009, and now cares for her daughter with special needs. Visit www.MichelleSeitzer.com for links to published work and more.
Meet them where they are. It’s a concept I wish I had understood and put into practice much earlier than I did. Years into our journey, I realized that my words, actions, reactions, and frustrations were a function of the fact that I was unconsciously expecting Mom to come back into my world.
I was overlooking the obvious, or perhaps I was just in denial. She could no longer find her way into my world; Alzheimer’s made sure of that. Now it was up to me to travel to her universe. Doing so was within my power, but I had to make a conscious decision to follow that path.
When I finally did, things began to change. It was only then that I found myself on the road to acceptance. The tension began to dissipate and rather than dreading our visits, I looked forward to them. There were still bad days and disappointments, but not as many.
In reality, the only thing that had changed was the way I looked at the situation. It was still a lousy situation, but when I met Mom in her world, the dynamic between us changed drastically. I stopped correcting her, arguing with her, and wearing my frustration on my sleeve.
Although our relationship had suffered years earlier when Alzheimer’s crashed into our lives, it was beginning to heal. Eventually, thanks to this change in perspective, the bond between us grew stronger than it had ever been.
Give it a try. Meet your loved one where he or she is, and watch how it transforms your connection.
Ann Napoletan
Ann Napoletan is a freelance writer, passionate Alzheimer’s advocate, and founder of the blog, The Long and Winding Road. She lost her mother in 2012 after a decade-long battle with this vicious disease.
Ann is a moderator for the USAgainstAlzheimer’s Facebook Support Group, is active with her local chapter of the Alzheimer’s Association, and volunteers in a local memory care unit.
She has written for various Alzheimer’s and caregiver-related blogs and contributed to Chicken Soup for the Soul: Living with Alzheimer’ s and Other Dementias and Seasons of Caring: Meditations for Alzheimer’ s & Dementia Caregivers.
Ann is also a founding member of the ClergyAgainstAlzheimer’s Network. You can find her on Facebook and Twitter.
Take up a Hobby About Which You Are Passionate: Caregiving can be all-consuming. Try to balance it with a hobby that’s all-consuming. It will get your mind off the stress of your caregiving duties and leave you feeling refreshed. You may select something you liked before or you may take up something new. Just be sure it’s something you really enjoy.
Ask for Specific Help: Most people want to help. They just don’t know what to do. So ask several friends and relatives to help you out. Ask each one to do a specific task every week. Keep the requests small. They will add up if you approach multiple people. This will give you some much needed respite and time to pursue your hobby.
Marie Marley
Marie Marley is a blogger on the Huffington Post, the Alzheimer’s Reading Room, and Maria Shriver’s website, where she publishes articles on caregiving.
She is also the award-winning author of the uplifting book, Come Back Early Today: A Memoir of Love, Alzheimer’s and Joy, which recounts her caregiving experience.
Visit her at www.ComeBackEarlyToday.com, which contains a wealth of helpful information for Alzheimer’s caregivers.
Marie is also the co-author of the forthcoming book, Finding Joy in Alzheimer’s: New Hope for Caregivers.
In all the presentations I give about my book, I always end with my motto for dementia which is the tip I love most…
It’s having NO EXPECTATIONS when it comes to this disease. When you don’t have expectations about what will happen next, you aren’t as disappointed when things don’t go well, or it’s a bad day…. And you can be elated when things go great!!! It’s worked wonders for me.
Loretta Vaney
Throughout her life, Loretta has chronicled family events through journals, photos, and videos, seeking to capture every moment.
After learning that her beloved mother Doris was the first female in the family to suffer from dementia, Loretta began documenting the details of doctor visits, and recording people, places, and things as a substitute for her Mom’s lost memory.
The combination of written documentation and her incredible memory became Loretta’s first published work, entitled Being My Mom’s Mom. Through her book, Loretta offers practical ideas and a wealth of encouragement for her readers.
Better to accept what is, than to mourn what isn’t.
This is part of the creed from my blog, One Brave Cowgirl. It isn’t something that came easily to me, and I don’t expect it to come easily to anyone else caring for a loved one with dementia. It took me months, maybe years, to get there. I spent far too much time miserable and angry that Mom was diagnosed with vascular dementia at just 71.
I’m not saying mourning isn’t an appropriate response to a dementia diagnosis, because it is. But dwelling on the sadness, the loss, the anger and frustration will sap every ounce of love and light from you. It will cripple your ability to care for your loved one, to be fully present for them, to help them as they maneuver dementia’s ever-changing landscape.
I had to make a decision to accept my mom “as is” – dementia and all. There was nothing I could do to change it or slow it down. I couldn’t go back in time and rewrite Mom’s fate, which is really what I wanted. All that was left was to accept it. When I did, my perspective began to change. I was able to handle her emotional and physical changes with more dignity and grace, and thus help her do the same.
Part of the acceptance was giving myself permission to laugh, because some of the things she said and did were truly funny. My laughter made her laugh, and I believe, feel better about herself. When I was able to laugh, I didn’t feel as panicked or afraid. My despair slipped away. I felt better, lighter, more hopeful. And because of that, I was a better caregiver to my mom.
Carol Fant
Carol Fant is the founder and Chief Reality Officer of One Brave Cowgirl, a website where dementia caregivers vent, breathe, swap Depends horror stories, and LAUGH.
Carol has been recognized as an Architect of Change on MariaShriver.com, and is part of the Big Wall of Empowerment at WipeOutAlzheimer’s.
Blog: www.onebravecowgirl.com
Facebook: https://www.facebook.com/onebravecowgirl
Twitter: @onebravecowgirl
Do not underestimate the impact on your life that caring for someone with Alzheimer’s or other dementia will have. Share the diagnosis with family and friends, and continue to educate them as you too empower yourself with knowledge about the disease.
Mike Good
About the Author: Mike Good is founder of Together in This an online resource helping family members caring for someone with Alzheimer’s or other dementia.
Through short, informative articles and easy-to-use tools, such as the Introductory Guide to Alzheimer’s, he helps them take control and have peace-of-mind they are doing the right things.
“As a caregiver, so much of our day is necessarily about the tasks, the ‘to-do’ list. It’s normal and completely understandable that those day-to-day, ‘have to do’ tasks have become the day’s primary focus.
Some family caregivers wake up each morning with a prioritized plan of how they’d like the day to go. The execution of duties like, ensuring that medications are taken, showers or baths are given safely, toileting accomplished, laundry, meals, dishes and appointments are taken care of and that adequate supervision is provided at all times for their loved one, often 24 hours per day, become the daily priorities. Their new normal may feel a lot like just getting through their day and all that it entails.
That ‘to-do’ list, either recorded on paper or kept mentally, is never far from most caregiver’s thoughts. Some review it in their minds as the last thing they think about before retiring each night. Weighing what was accomplished and what wasn’t. Reflecting on what they did do, didn’t do, what did get done, could’ve gotten done or should’ve been done in a kind of self-imposed audit enacted by internal order to measure and gauge their level of success or capability as a caregiver when often the only witness to their efforts is no longer able to recognize or appreciate all that they do.
The daily dance with how much you did or didn’t get done and how you feel about yourself can be an emotionally draining aspect of caregiving. Please consider challenging your definition of successful caregiving to include not just what you do for your loved one, but the quality of the time you spend together.
It’s OK if not everything on your ‘to-do’ list gets done each day. Put laughing ahead of laundry (at least sometimes!). Part of your daily goals should include at least one activity or interaction designed just for fun. Your loved one may have lost the ability to self-initiate the satisfaction of their own needs-including the pursuit of pleasure or fun and you may feel like you no longer have time for those things yourself. Make it a point to plan on setting time aside for this type of experience, whatever that may be, for both of you to do together.
Try making a fun interaction as much of a daily priority as medications, toileting and meals for just one week and see how it goes. It’s not just beneficial for your loved one, it can also really help you keep connected to the relationship you enjoyed with each other before care was needed and offer a much appreciated moment to spend time engaged in an activity that is not chore or necessity. Making it important to you increases the chances that it will happen for your loved one. Bottom line, if you don’t make it a priority, it probably won’t happen and both you and your loved one deserve some quality time each day!”
Mara Botonis
After thirty years in healthcare, working throughout the United States in the senior housing industry, Mara’s life and career trajectory was forever changed when a close family member was stricken with Alzheimer’s. Eventually, Mara stepped away from a successful career to write full-time, in the hopes of helping others impacted by this disease.
Her best-selling book, “When Caring Takes Courage: An Interactive Guide for Alzheimer’s and Dementia Caregivers” has been well-received and strongly recommended. Mara continues to be a sought after speaker and valued care partner for families and organizations affected by Alzheimer’s/dementia as she shares her positive and empowering message.
Helping families, like her own, that have loved or lost someone special to this terrible disease is her greatest passion. Mara is a 2015 recipient of both the Jefferson Award and Jacqueline Kennedy Onassis Medal for Outstanding Public Service at the national level for those impacted by Alzheimer’s/dementia. Learn more about her work by visiting her website www.whencaringtakescourage.com, Facebook page, LinkedIn or Google+ profile.
Return to the “Stuff Senior Citizens Need” Homepage
If you enjoyed this article, please share…Thanks!