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The Long and Winding Road…

~ An Alzheimer's Journey and Beyond

The Long and Winding Road…

Category Archives: Books

A Caregiver’s Guide to Caring

29 Friday Aug 2014

Posted by Ann Napoletan in Books, Caregivers, Guests, Helpful Resources, Tips

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alzheimers, alzheimers tips, caregiving, dementia

I’m very pleased to present the following guest post by author and health care consultant, Anne Hays Egan.

Caring List

by Anne Hays Egan

Caring for a parent or other loved one with Alzheimer’s disease can be one of the most difficult, exhausting, joyful, and rewarding things you do in life. It was for my brothers and me.

Mama had been charming, headstrong, and brilliant. She taught piano for decades, and loved music. When we realized that she was having memory problems, she was still active teaching piano, going out to church and seeing friends. But we realized she was having trouble when she told us about some “nice young men” who put a new roof on the house which was much too expensive. When she told us that “they were so nice they even took me to the bank,” we knew that she was at risk.

Over the years, we helped her to navigate the difficulties of living with Alzheimer’s. It started with updating her will and her financial records. Each of us visited her more often, staying longer. We worked with her to help her manage her living situation, facing many challenges.

It meant taking the keys to the car (in her case, we removed a spark plug). Over time, her world shrank, and with it, her ability to communicate. We increased the number of hours of care, and then we moved her to live with one of us, with caregiving support. We looked for activities that would engage her, and increasingly focused on the little things, like watching the birds.

We developed a checklist that we’ve shared with others, which you might find helpful.

Finances – work to understand their financial situation, and then protect it. Know what benefits may be available to them. www.benefitscheckup.org by the National Council on Aging is a great resource. Ensure that a will, living will, and Health Care Power of Attorney are in place.

Caregiving – find out about your loved one’s preferences, whether for caregiving in the home, nursing home care, or moving in with a member of the family. See what different family members can do to help.

Community Resources – learn about the community resources, such as the local Senior Center, caregiving programs, respite care, meals and transportation, nursing, caregiving, and other medical resources.

Self-Care – develop a plan for caring for yourself early on, and find others who can provide support. Friends who have gone through a similar situation are invaluable. And, there is a very supportive network on Facebook called Memory People, which provides excellent information and support.

Whenever possible, take time to capture some of your special moments, as these will be your memories in future years. One of the most important things we learned from our caregiving is that the person is there, and one can have many meaningful connections, even when the mind dims.

__

Anne Hays Egan is a health care consultant working with community health planning and evaluation, including helping communities develop plans for older adult services. She is the author of Moving Mama: Taking Care of Mother During her Final Years with Alzheimer’s.

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Round Up: The Latest From Around the Web

26 Tuesday Aug 2014

Posted by Ann Napoletan in Advocacy and Awareness, Books, Caregiver Burnout, Caregivers, Early Onset, Face of Alzheimer's, Helpful Resources, Music and Art, Round Up, Safety, Sandwich Generation, Silver Alert, Technology, Tips, Wandering, Washington

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alzheimers, alzheimers art, caregivers, caregiving, dementia, sandwich generation, wandering

lasso.gifCheck out these tidbits gathered from around the web over the past week….

Listen to this edition of the Diane Rehm radio show as Emmy award winning journalist, Meryl Comer, talks about her new book, Slow Dancing with a Stranger. Meryl’s husband was diagnosed with early onset Alzheimer’s at age 58, and she cared for him at home for two decades. Dr. Harvey Gralnick led hematology and oncology research at the National Institutes of Health; a brilliant man and a sobering reminder that Alzheimer’s does not discriminate. Don’t miss this poignant and enlightening conversation.

Kudos to U.S. Senator Bob Casey who announced his plans to introduce the Caregiver Corps bill. This legislation is intended to empower community agencies to build and train a pool of volunteer caregivers to provide assistance to families in need. Read more about Casey’s proposed bill in this article from LancasterOnline.

With the percentage of the U.S. population age 65 and older exploding in coming years, what exactly are we doing to prepare? As Anne Hays Egan suggests in this piece for NonProfits Online, communities should be addressing plans for the “Silver Wave” now. Time is of the essence – we can’t afford to wait.

Alzlive shares an interesting article about Evermind, a small device that plugs into wall outlets and connects to various household appliances (e.g. coffee maker, television, bedside lamp). The gadget monitors when each appliance is turned off or on and sends notifications via text message or email. A change in routine serves as an alert to distant caregivers that they should check in to ensure their loved one is okay.

This fascinating piece from The Atlantic explores the emergence of artistic talents after a dementia diagnosis. How is it that someone with severe dementia can sometimes communicate beautifully through music or art? The key is in understanding that while dementia doesn’t impact the entire brain. Undamaged areas may actually “wake up” to reveal these artistic abilities that had been previously suppressed by healthy parts of the brain.

Learn more about Project Lifesaver, a program aimed at finding missing persons and returning them safely to their homes.  Over 1,300 first responder agencies in 47 states participate, and PLI states their recovery times average 30 minutes – 95% less than standard search operations. Members wear a small GPS device that tracks their whereabouts, and rescuers are trained in how to approach and communicate with individuals suffering from cognitive impairment.

In her recent article for MariaShriver.com, Ellen Woodward Potts focuses on the sandwich generation, offering coping tips for caregivers who are stretched too thin. More and more Americans find themselves caring for aging parents while still raising children, and the associated stress can be overwhelming at best and a serious health risk at worst.

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Elaine Mansfield on Advance Directives: Be Specific

27 Sunday Jul 2014

Posted by Ann Napoletan in Books, End of Life Planning, Family, Grieving, Helpful Resources, Living Will, Mom, Ruminations, Saying Goodbye, Tips

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advance directives, alzheimers, dementia, end of life decisions, grief, grieving, living will

Elaine Mansfield, Author

One of the greatest gifts my mom gave me in this lifetime was having her advance directives in order long before Alzheimer’s was so much as a blip on our radar. I remember when she had them done. At that point, I thought, “Okay, that’s done, but I really don’t want to think about. Furthermore, it’ll be forever until I HAVE to think about it.”

And life goes on….

Then one day, in a complete twist of what you believed to be fate, life changes drastically and forever.

Alzheimer’s.

Even with the documents in place and my mom’s wishes crystal clear, the end was agonizing. No one can prepare you for those final days and the sense of helplessness you’ll feel. However, I can’t begin to imagine how exponentially more difficult it would have been if the medical team had been looking to me to make those decisions no one ever wants to be faced with.

Please take a few moments to read this important, thought-provoking piece by my friend, author Elaine Mansfield.

Why I Added Detailed
Advance Directives to my Living Will

 

Elaine’s article has me rethinking my own Living Will and considering adding more detail as she and her husband, Vic, did. This specificity leaves no room for interpretation, and the fact that it’s handwritten also adds a certain level of comfort. It’s one thing to see a typewritten document initialed and signed by your loved one, but seeing these details written in their own hand – I think it might help the mind and heart to reconcile, finding a place of certainty and peace.

If nothing else, I hope this article will encourage you to give some thought to advance directives – particularly if you don’t have anything in place. Don’t leave these decisions to your loved ones; when the time comes, they will be struggling enough without having this additional weight on their shoulders.

___

Elaine Mansfield’s book, Leaning into Love: A Spiritual Journey through Grief will be on shelves in October. It’s one you’ll definitely want to add to your reading list. You can find Elaine on Facebook and Twitter, and of course, you can visit her blog to experience more of her beautiful writing.

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Marilyn, BA (before Alzheimer's)

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