In my ongoing “Face of Lewy Body” series, I want to talk about a very important concept, building your “caIMG_1794re partner team.” It is far too easy to think as a spouse (or primary family caregiver) facing caregiving … “I can do it all” or “I have to do it all”.

You know I always loved that song by Helen Reddy, “You and Me Against the World.” But that is absolutely NOT the right perspective. You will burn out AND loved one will miss out on the caring, love, expertise and rich relationships with others.

Building your care partner team is vital. Ours include our wonderful caregiver (2 afternoons a week), adult day program (one day a week), our adult children (living across the country), my husband’s alumni friends, his doctors and nurses. It’s true that my husband’s condition continues to “evolve” and I often feel I am in a state of constant assessing and adjusting. But I know I have my “care partner team” in place and ready to help us. Before I ask for help, I am careful and respectful to think about the right person and right question to ask.

Amidst the crises and challenges, often an amazing opportunity will pop up and I’ll wonder, how can I help my husband take part. Today I pondered, how can I get my husband to his 50th reunion in Newport, RI in September? I reached out to our older son and asked, can you join us in this trip? He immediately said “yes”. My heart was full as I realized this special time together will be a gift for my son and his father to share old and new memories.

The lesson: Build and nurture your care partner team for your loved one and yourself. It’s not just finding and coordinating care, expertise and support. It’s about expanding the circle of love for you and your loved one!

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bill chris jan 2017

In my ongoing “Face of Lewy Body” series, I want to talk about two very important concepts to the person with dementia. Identity and relationship.

The diagnosis of dementia can literally make a person feel as if they have lost who they are. Sometimes it seems that those around them reinforce that by their reactions and dismissal. I recognize this and seek out friends and experiences that will lift my husband up and help him feel embraced and loved.

Here’s a photo from his recent monthly USNA alumni luncheon. When we arrived last week and I was helping him get his coat off, I saw everyone stop and watch us. But, it wasn’t with judgmental eyes. I believe they were trying to understand. John got up and helped me get Bill situated and seated among his friends. I can’t tell you how much this time together means to me (and to him:-)

The guys spent two hours sharing books, war stories and all the wild shenanigans they had done as young men. What a brotherhood! Through this wonderful group, Bill has retained his identity and has certainly found caring and loving relationships that I know will persevere.

Here is “The lesson: Preserve identity, celebrate personhood and create meaning in the moment” ~ Dr. G. Allen Power.

 

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Face of Lewy Body series: Holiday Celebrations

December 28, 2016

In my ongoing series of the “Face of Lewy Body”, this week’s insight is all about holiday celebrations. Someone with dementia may be overwhelmed by all the people, noise, and change in environment during the holidays … things that we take in stride. A little stress for us translates into a lot of stress for them. […]

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Changing Eldercare: Dr. Bill Thomas presents his disruptive vision of aging & dementia care

September 27, 2016

For decades, the only dementia story heard is one of loss and despair. But there is a new dementia story being told: a story of joy and growth. It is a story being told by, and for, people living with dementia. Geriatrician Dr. Bill Thomas is currently barnstorming the country in a rock-n-roll tour bus to […]

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The Power of Community for those with Dementia

September 19, 2016

We have all heard how important socialization is for us as we age.  That is especially true for those with dementia.  But I now believe that we must move beyond socialization to “community.”  My husband (Bill) and I experienced the depth and power of community last week when we traveled back to Annapolis, Maryland to attend […]

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Prescription Cocktails and the Older Driver

August 29, 2016

(Many thanks to our guest author, Matt Gurwell, Founder of Keeping Us Safe, LLC.  August 25, 2016) Tragedy in Denver On July, 13, 2016, on a city street in southeast Denver, 81-year-old Patricia Livingston drove her Audi A4 into two boys out for an afternoon ride on their bicycles, killing 14-year-old Cole Sukle and severely […]

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The Amazing Alternative to Nursing Home Placement

July 29, 2016

If you are a family caregiver of an aging loved one with increasing physical and mental decline, you may be getting close to a tipping point, not sure how much longer you can meet those increasing needs. You may be Overwhelmed by the increasing hands-on care that’s needed Emotionally and physically worn out Your loved […]

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Hospice Care, Individual & Family Choice

May 29, 2016

(Many thanks to our guest blogger, Ellen J. Windham, hospice professional and author of the new book, “Hospice: The Last Responder“.  It is absolutely critical that each of us be informed about our options regarding hospice.  Otherwise, we will unknowingly relinquish control of one of the most important decisions regarding our loved one’s care … […]

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Kidney Disease – Early Detection Can Save Your Life

May 23, 2016

(Many thanks to our guest blogger, Shirley Barchi, avid world traveler, hiker, lover of theatre and reading, passionate volunteer (in theatre, library and reading programs for children, and numerous athletic events)….. and now adovcate for kidney health) According to the National Kidney Foundation, more than 20 million Americans – one in nine adults – have chronic kidney disease […]

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Aging parent? Send to All – Reply to All

February 22, 2016

(Many thanks to our guest blogger, Cathy Fairchild, owner of Say Yes to Less and professional organizer extraordinaire!  You may connect with Cathy and learn more about her and her awesome services at www.sayyestoless.guru) I grew up in a large family – my parents raised five sons and three daughters and I was number six.  My […]

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