IMG_1794As caregiver spouse for my husband (with Parkinson’s and Lewy Body dementia),  I want to share a few of my key “lessons learned.”  I wrote this “still relevant” list in another blogpost 2 years ago.  Amazing how timeless these lessons are.

  1. As a caregiver, recognize that you will ride an emotional roller-coaster. There were moments of feeling blessed for receiving an early diagnosis and then times of despair as I realized that our future had changed forever.
  2. Recognize that while there may be no cure for a loved one’s diagnosis, we each can choose our response to the situation. I’ve always been an action-oriented advocate.  Know there is a time for that BUT there is also a time for just being present with your loved one.   There is great healing in your presence, even just sitting in silence.
  3. Certainly educate yourself and your family members about the illness and prognosis. But recognize that each family member will process the situation differently and in their own time.  My daughter told me she could not bring herself to read the info I sent her, but one night she watched a Netflix show, “The Boss”, in which the lead character has Lewy Body.  She told me she sat, riveted to the show, and finally was able to understand what was happening to her father.
  4. Ensure you build and maintain a circle of support for your loved one and for you. My husband’s “twice a week” CAREgiver is a vital part of his life.  He tells me that she patiently helps him, shares in his interests and even plays the piano for him.  As for me, a colleague convinced me to take a much needed birthday getaway weekend with a childhood friend while my son took my husband to see his sister. Sometimes it seems that all the planning to do special events is just too much trouble and expense, but it is critical for your well-being.
  5. One thing I struggled with even before being a caregiver was getting enough sleep and fitting in workouts. This is not just important.  It is vital to your physical and emotional health.  Set a bedtime and get at least 7 hours of sleep.  I choose to do my workout in early morning.  It doesn’t matter when you exercise, meditate or take time for yourself.  The key is actually doing it!
  6. And, finally, recognize you are on your own unique journey. There is no right or wrong way to do things.  So much is out of your control.  If you act out of love, compassion and the humility that you need others, you will be doing the best you can for your loved one and yourself.

Thanks to all the many local friends and colleagues who support me each day as well as some of the most amazing virtual colleagues.  It is from your wisdom and insight that I have been able to craft my caregiving philosophy and all I do.  I love each of you, Viki Kind, Gary LeBlanc, PK Beville, Susan Baida, and so many more.

If you’d like to share tips from your caregiving journey, please join me on Facebook at “Transition  Aging  Parents”.

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living well(Many thanks to our guest blogger Laura E. Bender, a Ph.D. student in health services research at the University of Washington School of Medicine.)

Conversations about the end of your life can be scary, sad or awkward. But these conversations also can be comfortable.

A few years ago, on a flight from Denver to Philadelphia, the woman seated on my left asked me what I did for work. I assumed my response would kill the sociable dynamic of our conversation if I didn’t choose my words carefully. I’m a palliative care researcher and, at the time, I was reading detailed patient death notes in medical records and talking with family members of recently deceased veterans about the care they received in their last month of life.

“I study the experiences of people dying and the choices people face at the end of their life,” I told her.”

Most people would quickly respond with a degree of uneasiness, saying how sad my work must be, and then they find a way to change the conversation. This woman was refreshingly different. She dove into how important she knows my work is and how she is confident in the choices she has made for herself. I learned she was perfectly healthy and vibrant. She didn’t work in a health care related field, but she was clear when she did and did not want a resuscitate order.

Many people rarely have such a casual conversation, let alone any conversation at all about advance care planning and end-of-life choices. But now is a good time to think about that decision by using the many free resources available for National Healthcare Decisions Day at nhdd.org

I confidently can say that people often don’t know that they even have choices. Many of the people I have spoken with assume they will get the type of care they want wherever they are. If a person has a condition so severe that he or she is unable to communicate, doctors, family members, friends, and, even, sometimes state and federal regulations dictate what happens. Any disagreement may prolong decision-making and possibly increase the chances of suffering. This confusion and conflict that can arise during difficult times can be eased with preparation.

Educational barriers often result in inadequate end-of-life care conversations. The NHDD website provides links to official legal documents for your state, as well as games, such as “Hello” (commonpractice.com/hello), a conversation game about “living and dying well” that can be played by anyone of all ages. NHDD reminds us that it is never too early to talk about your health care preferences and you do not have to figure it out on your own.

I long to live in a world where there are people like the woman on the plane who feel empowered to discuss these important decisions. Show love for yourself and those you love to live the best life all the way through to the last moments.

Laura E. Bender is a Ph.D. student in health services research at the University of Washington School of Medicine.

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The Face of Lewy Body: To travel or not to travel

April 16, 2017

In my ongoing series of the “Face of Lewy Body”, this post explores the challenge of traveling with someone with Lewy Body. We’ve had quite the month. I placed my husband Bill (mid-stage lewy body) in respite care for a week while I attended a conference. After returning home, exactly one week passed before we […]

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How to find the right medical alert for your loved one

March 6, 2017

On the day before I was to meet with a dear friend who was declining in health and in need of specific resources, an article came through my email, quite fortuitously. The article was a detailed review of medical alerts on the market.  It had been a few years since I had done my research, […]

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Capturing Your Loved One’s Story – In Their Voice

March 3, 2017

Is there any greater treasure than to hear your loved one’s voice after they have passed away?  My dear mother passed away in September, 2015.  Imagine my surprise when Facebook showed me a memory of 7 years ago, a recording of a 30 minute radio interview with my mother! We get so busy with all […]

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The Face of Lewy Body: Building Your Care Partner Team

January 23, 2017

In my ongoing “Face of Lewy Body” series, I want to talk about a very important concept, building your “care 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 […]

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Face of Lewy Body series: Identity and Relationship

January 18, 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 […]

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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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