Caregivers Need Care, too

by dale on November 5, 2017

(Many thanks to our guest blogger, Lydia Chan, for sharing her wonderful insight for caregivers.  Self-care is not optional.  It can be life saving!)
self care blog image

 November isn’t only a time for thanks, it’s also National Family Caregivers and National Alzheimer’s Awareness Month. And as those who care for Alzheimer’s patients are aware, it’s is a terrible disease that takes a toll not only on the sufferer but on their families as well.

Caring for a loved one with Alzheimer’s is a full-time job. It is a thankless and exhausting labor of love and one that many caregivers are unwilling to step away from even for a moment. However, it is this sense of obligation that often results in caregiver syndrome. CNN notes caregiver syndrome presents with guilt, anger, depression, and deteriorating health. It can be debilitating and compromise the care being given. Here are a few ways to combat caregiver fatigue so that you may continue to provide lifelong care for your aging family member: [click to continue…]

Share

{ 0 comments }

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”.

Share

It’s Time to Have a Conversation About Your Health Care Decisions

April 19, 2017

(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 […]

Share
[click to continue…]

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 […]

Share
[click to continue…]

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, […]

Share
[click to continue…]

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 […]

Share
[click to continue…]

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 […]

Share
[click to continue…]

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 […]

Share
[click to continue…]

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. […]

Share
[click to continue…]

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 […]

Share
[click to continue…]