"Your Caregiver Relationship Contract" - a Book Review

In January, I met with my fellow New Jerseyan, friend and caregiver consultant, Debra Hallisey. Debra founded AD-VO-CATE FOR MOM AND DAD, LLC and her website, https://advocateformomanddad.com/ has a wealth of information about various topics including finances, caregiving support and healthcare. As we ate, we discussed how our families were doing and the relationship that cancer caregivers have with their loved ones.

As we finished our meal Debra gave me a copy of her latest book, Your Caregiver Relationship Contract. I started to read the book and put it aside due to other commitments. Then the world became all things COVID -19. 

A few days ago I picked up the book again and finished reading it. What a helpful book! If you are a family member or friend taking care of an elder parent or relative this book can assist you in developing a contract and also in having those difficult conversations that come with being a caregiver. One point that Debra makes early on in the book when talking about making a contract is the need to "co-create" a contract that works for both you and your parent.

There are chapters that cover life changes, how this time can be an emotional journey, how to have those hard conversations, setting boundaries, asking for help and where to find support for yourself as a caregiver. At the end of each chapter there are exercises that help you put into practice what you learned in each chapter.

These following points stood out as I read the book.

Don't parent your parent.

The changes you may be asking your parent to make are emotional for you and for them.

Carees and caregivers alike must learn to ask for and say "yes" to help. 

You will also find a helpful list of resources at the end of the book.

If you are a caregiver for an elder parent or even if you are a caregiver of someone with a chronic illness Your Caregiver Relationship Contract is an excellent source of information. The book is available on Amazon https://www.amazon.com/Your-Caregiver-Relationship-Contract-expectations/dp/0578543834 .


Thanks Debra for providing me a copy and I look forward to another meal together in the not so distant future.
Dee
Every day is a blessing!

You Never Know

I have been going to the same hairstylist for close to 20 years. I love how she cuts my hair and I enjoy our conversations every 6 weeks or so.

We have been through a lot together.

When I was first diagnosed we talked and I asked her to cut my shoulder length hair very short.  I remember as her eyes teared up a she cut it and she gave me a big hug when I left the salon. I was back about a year later for her to trim the curly fuzz that had appeared on my head. She didn't charge me for the trim or for the next 2 trims. 

She styled my daughter's hair for her wedding. And a few months later, when I recurred, she was cutting my hair short again. This was around the time her mother had a stroke. We talked about her rehab and how they made her parent's home better suited for a wheel chair. I would always ask how her mom was doing. I loved hearing about how her mom attended family weddings and took an occasional trip to the shore or Atlantic City.   I was sad when I learned her mom had passed.

I went to the salon the other day for a hair cut. It was our usual conversation catching up on how my daughter and grandsons are doing.  Then she stopped and said " My Aunt had a hysterectomy last week." She paused and went on to say " She learned yesterday she has stage 3 ovarian cancer - there was cancer in her lymph nodes". She said her aunt was scared and I said I know that weak in the knee feeling.  Then I told her I was stage 3 too. She then said to me "it's been about 5 years for you right?" When I said 10 years in July she looked up at me in the mirror and I could see her eyes tear up. She said "I can't wait to tell my Aunt".

As I got up from the chair I reached for my bag and gave her my card with my e-mail and phone number on it. I  told her to have her Aunt call or e-mail me if she has any questions or if she just wants to talk.

You never  know when you will hear of another woman diagnosed with ovarian cancer.


Dee
Every Day is a Blessing!

MedX - A Place for Conversations

A week ago I was still in the midst of experiencing Stanford MedX. MedX was a conference like no other conference I had ever attended as an ovarian cancer survivor and research advocate. In the words of Larry Chu, MD executive director of MedX , “MedX seeks to unite all health care stakeholders in a conversation about the future of medicine.” I saw those conversations taking place every day of the conference. There were conversations between people who worked in the pharmaceutical industry and patients, physicians and patients, caregivers and designers, and patients and engineers. They didn’t just take place on stage or in the workshops but in the hallways at Stanford, on the benches outside during lunch and break and at the hotels where participants stayed.

I was lucky to have conversations with people I knew from the twitter world and the blogosphere by the pool at the Sheraton where I was staying. I was thrilled to meet and have lunch with Dr. Ann Becker-Shutte, who is the mental health moderator for the #gyncsm chat/ community that I moderate. She had conversations on stage, in workshops and in the halls of Stanford about depression and chronic disease. I had conversations with high schooler Jack Andraka (@jackandraka) who invented an inexpensive cancer detection test , Susannah Fox (@SusannahFox) whose website I have been reading for a long time, Marie Ennis-O’Connor (@JBBC ) whose excellent advice about twitter I have followed and Dr Peter Yu (@YupOnc)president of ASCO about my experience of attending ASCO as an advocate.

One night after a busy conference day I had the pleasure of spending time with Colleen Young (@colleen_young, #hcsmcs) , Janet Freeman- Daily(@JFreemanDaily, #LCSM), Annette McKinnon( @anetto, and Meredith Gould (@MeredithGould, ) and Ann. As online health care community leaders we shared ideas about how to better serve and reach our communities. After meeting these women in person I know that this is one conversation that will continue.

Sharing ideas and relaxing by the pool 

I had different types of conversations with other e-patients. I learned the best way to attend MedX  and how to not be nervous on stage from the e-patient advisors. My room mate, Meredith Hurston (@meredithhurston), and I had some fun and some serious conversations before we collapsed from sheer exhaustion after a busy day at the conference. When I spoke to Matt Dudley, I told him I was moved to tears by his Ignite talk. There were hugs with other patients when they finished their presentations when words seemed inefficient. Having a niece with Type 1 diabetes made it easy to strike up a conversation with the e-patients who had diabetes. And these are only a few of the interactions I had.

I also had conversations with the reps from the 3-d printing companies. I am amazed at the quality and usability of the products those printers produce. I spoke with Barrett Larson (@Barrett_Larson), Leaf Healthcare about his device designed to monitor patients and signal a change in position to prevent bedsores.  This made me wonder about  about how it could be used for Alzheimers patients so we talked about that too. I spoke to Tal Givoly  (@givoly), Medvizor, about the inclusion of gyncecologic  Cancers on the Medvizor website. And I spoke to Joseph Kim (@JoPeKim), Eli Lilly, regarding ways to increase the participation of patients in clinical trials.

I learned information about other chronic illnesses that I might never have known had I not attended MedX such as what difficulties other patients have functioning at work or adjusting to things when first going to college or getting data from instruments that record blood sugar. I also learned about the difficulties physicians face when given only 15 minutes to see a patient. 

This is just a snippet of the hundreds of conversations I had at MedX. It does not really do justice to the wonderful interactions and things I learned but I hope it provides a picture of how conversations can affect the future of medicine – one conversation at a time. I know the conversations I have had will stay with me for a long time.  

 Dee

Every Day is a Blessing! 

Dinner Guests - HAWMC 19

5  Dinner  Guests.  ␣Who are five people you'd love to have dinner with (living or deceased)  and  why?

Well this is an interesting prompt. I'll give you the names of those I would love to meet in person. 

Walt Disney

Pope John Paul II

Cesar Milan

Rosalind Franklin

Werhner von Braun

Now here is why I chose these people and why they were the first ones to come to mind. 

Walt - I love Disney World and Disney animation. I also think he is a creative genius and would love to hear where his ideas came from.

Pope JPII- I have always respected how JPII was able to connect with so many people- young, old , from different ethnic and religious backgrounds. I also respected how he handled his suffering and pain during the later years of his life.

Cesar Milan- I am a dog lover and I have read Cesar's book. He has had an interesting life and would love to have him meet my dogs.

Rosalind Franklin- I would like to talk to her about her DNA research and how it was to be a female doing such ground-breaking research. I'd love to ask her what areas she would investigate now to find a screening test for ovarian cancer.

Werhner von Braun- Since grammar school I have loved science and space flight. I would like to hear how Werhner decided to study aeronautics and how he adjusted to living in the United States. 

It sure would be an interesting dinner. 

Dee

Every Day is a Blessing!

Do You Read "Conversations"?

Back in 2005 while I waited for my gyn -onc to give me the OK to have chemo, I picked up a newsletter. Conversations- the International Newsletter for those Fighting Ovarian Cancer was the first ovarian cancer publication I ever read. And I continue reading it to this day. ( Happy 17th Birthday Conversations!)

There are many helpful tips from other survivors, a calendar of events being held across the country and in June and December the issues are dedicated to long term survivor stories. I love those. But I think the best part of the newsletter is going to the inside page which lists survivors. Every July there is my name - Dee , NJ.

Thank you Don and family for continuing the publication Cindy started. You have touched the lives of many women.

For more info check out the Conversations website. Would you like a copy of the newsletter? Fill out the form on their website or contact Don at :

CONVERSATIONS!
P.O. Box 7948
Amarillo, TX 79114-7948
United States of America

Phone: (210) 401-1604
Fax: (210) 247-6169

Dee
Every Day is a Blessing!