Caregiving, Taking Care of Yourself

Caregivers-Be Kind to Yourself-Part 2

This blog is continued from December 4th blog on CAREGIVING

6. Don’t ignore your emotions

Pay attention to your own feelings and emotions, and seek counseling if needed. Vent feelings to trusted family members or friends.

7. Take time for yourself

Use relaxation or stress management methods such as meditation, visualization and yoga. Books and videos are available to guide you in these techniques.

8. Read, pray or meditate for at least 15 minutes a day         

My 102 yr. old Grandmother Chris Crutcher. My Aunt Trina & 2 cousins looked after her.

Consume daily prayer books and helpful magazines like Today’s Caregiver and Caring Today, or books such as Chicken Soup for the Caregiver’s Soul to uplift your spirits. If you’re religious, seek the counsel of a spiritual leader you trust and respect.

9. Chuckle more often

Laugh, reminisce and share stories of happy times.

10. Ask for help

Friends, family and religious groups may be eager to assist and are only waiting to be asked and directed. Doing everything yourself deprives others of an opportunity to serve.

Articles on being a caregiver:

mayoclinic.org/healthy-lifestyle/stress-management/in-depth/caregiver-stress

UCDavis Caregiver & Community Resources 

We Can Never Lose HOPE……

100% of the profits are being donated to the nonprofit, Huntington’s Disease Society of America, HDSA.  

The book is available on Therese’s author website http://www.theresecrutchermarin.com & many book websites like Amazon

 

Caregiving

Caregivers-Be Kind to Yourself-Part 1

As a caregiver, one must remember to take of yourself because if something happens to you, what will happen to your loved one you care for?  Caregiving a loved one with Huntington’s disease is unique.  Caregivers-Guide-to-Huntington’s Disease

AARP suggests 10 things caregivers can do to stay healthy. 

Here are the first 5.

6-10 will be on my December 6th blog.

1. Eat well-balanced meals

And do so on a regular schedule. Take a daily multivitamin. Drink six to eight glasses of water a day.

2. Exercise every day

Move your body daily, even if it’s simply 15 minutes of stretching, yoga, calisthenics or walking. Use the stairs to keep your circulation going.

3. Get outdoors

Fresh air renews the body and spirit — even if you only have time for a brief outing. When possible, open a window.

4. Get your zzz’s

Strive for a minimum of seven to eight hours of consecutive sleep in a 24-hour period. Nap when your loved one naps.

5. Treat yourself

That is, get treatments for your own aches and pains before they turn into something more serious.

Caregiver support groups can be found on Facebook.  Here’s two to check out:  https://www.facebook.com/groups/103001490399094/

https://www.facebook.com/groups/103001490399094/

We Can Never Lose HOPE……..

100% of the profits from the book are being donated to the nonprofit, Huntington’s Disease Society of America, HDSA.  

The book is available on Therese’s author website http://www.theresecrutchermarin.com & many book websites like Amazon

 

 

Mindful, Taking Care of Yourself

Don’t Sweat the Small Stuff

Left to right: John, Cindy & father, John

In 1999, John’s second sister, Marcia, was stolen from us by Huntington’s disease (HD).  She was 49 years old, had struggled with HD for 15 years and we had been by her side through those years.

On New Year’s Day, 2000, Cindy’s best friend called and asked John to take Cindy back to California to live with someone because HD was progressively rapidly. The next day, John jumped on a plane to Canada, packed Cindy’s stuff and Kayla, her dog, and flew back to California where she would live with her father.  

The next week, John bought home a book to share. The book was, Don’t Sweat the Small Stuff…..and it’s all small stuff by Richard Carlson, PH.D. John and I started reading a chapter a couple of times a week before we went to sleep. (Short chapters) Each chapter rebooted my brain to focus on the present, not the past or the future.  #LiveMindfully

Author Richard Carlson comments about the book.  Click here to watch the video: https://www.youtube.com/watch?v=O2MWSS_7KKI

We Can Never Lose HOPE…….

  

Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s is available on Therese’s author website http://www.theresecrutchermarin.com and many book websites like Amazon

Hospice

November is National Hospice & Palliative Care Month

The last 10 years of my healthcare career was in Hospice at Sutter VNA and Hospice in Auburn California.  “Hospice is specialized type of care for those facing a life-limiting illness, their families and their caregivers. Hospice is quality of life and living each day as fully as possible.

What is hospice-care

How to have a talk about hospice care

I’m not a clinical person, I faint at the sight of blood, but empathy is my middle name.  As the Hospice Support Services Supervisor, I lead a Community Outreach Committee, recruited and trained hospice volunteers that I placed in a family’s home, developed & implemented a marketing plan each year, supervised the CBAG program (Children’s Bereavement Art Group) and the local hospice thrift store that I started from ground up.

Cicely Saunders, founder of Hospice.

Every November was an exciting time for the Outreach Committee because it afforded us the opportunity to reach out to doctors and the community to help them understand the benefits of hospice care.

About Dame Cicely Saunders 

We Can Never Lose HOPE…..

100% of the profits from Watching Their Dance are being donated to the nonprofit, Huntington’s Disease Society of America, (HDSA).  

The book is available on Therese’s author website http://www.theresecrutchermarin.com & many book websites like Amazon

 

Family

Happy Turkey Day

    From my family to yours, Happy Thanksgiving! 

    

We Can Never Lose Hope………….

 

 

Helping Others, Kindness

A Thanksgiving Meal for Our Homeless Clients

John and I volunteer on Monday’s at a Homeless Center in Auburn; I interview the clients and John is the shower guy.  After being interviewed, they pick out clean clothes then go to the shower.  (There are 4 shower stalls and John cleans them after every client)  https://www.aubsda.org/

Yesterday, the center held a Thanksgiving Dinner for our clients.  It was awesome and I have never seen so many smiles at one time on their faces.

So, two weeks before the dinner, and in order to know how much food we needed, the interviewers, that’s me, asked clients if they would attend the dinner.

It nearly broke my heart when many of them nodded, then dropped their head and said, “Yes, thank you, thank you.  I don’t have anywhere to go to have a Thanksgiving meal”.

I’m posting this puzzle picture because it portrays how the homeless feel.  Forsaken, forgotten, lost, abandoned, isolated.  John and I feel that the homeless are part of our community, like a piece in a puzzle, and if we can make one day a little bit better for them, then we have helped our fellowman.

We Can Never Lose HOPE….

 

 

 

 

 

HDSA Fundraising events

HDSA 2018 NYC Marathon Team

The results are in for one of the biggest fundraiser for Huntington’s Disease Society of America (HDSA) held on November 4, 2018.

The 26 runners on the 2018 HDSA NYC Marathon Team, raised      $114,560.00!

                 Thank you so much

          

To read about the 26 HDSA Team runners, go to: https://www.crowdrise.com/o/en/campaign/huntingtons-disease-society-of-america-nyc-2018

Our daughter, Vanessa, and daughter-in-law, Fran, were on the HDSA 2016 NYC Marathon Team and raised $110,000.00.                    

Our son Keith, son-in-law, Scott, Scott’s parents, John and I traveled to New York and cheered them on.  We had so much fun while the runners raised money to help in the fight against Huntington’s disease.What-is-HD

To apply to be on the 2019 HDSA NYC Marathon Team, go to this page in March to sign up: https://hdsa.org/how-to-help/nyc-marathon-team/

We Can Never Lose Hope…………..

Grief

There Are No Rules for Grieving

Grief is as individual as you are. We are all unique, having had different life experiences that make us who we are.

So, I think it is safe to say, each of us will undergo a different grief experience.  There are no rules set in concrete regarding Grief.  In other words, there’s no certain way to grieve, or a certain time when you should be over it and no certain time to move on.

A few tips to help when you are grieving:

  1. Express yourself. Talking is often a good way to soothe painful emotions. …
  2. Allow yourself to feel sad. It’s a healthy part of the grieving process.
  3. Keep your routine up. …
  4. Sleep. …
  5. Eat healthily. …
  6. Avoid things that “numb” the pain, such as alcohol. …
  7. Go to counseling if it feels right for you

Articles on Grief:

http://www.mentalhealthamerica.net/conditions/coping-loss-bereavement-and-grief

https://www.nhpco.org/resources/grief-and-bereavement

Book on griefGriefland https://www.amazon.com/Griefland-Thomas-Nadelin/dp/1257060317

If you are interested in finding a local bereavement support group, look up a hospice program because they offer support groups you can attend free of charge in the community.

I grieved my three (3) sisters-in-law who died of complications from Huntington’s disease for many years.  It was not until I finished writing John & my story & publishing the nonfiction book, Watching Their Dance, did I feel like I had dealt with my grief and found peace.

We Can Never Lose HOPE….

              

Fundraising, HD Advocates

Trey Gray-Drumming Up Huntington’s Disease Awareness

Trey Gray, a famous drummer, and his friends held a special evening at the Vegetable Buddies establishment in South Bend Indiana http://buddiesdtsb.com/ last October.  The band hosted a concert, and because of his notoriety, Trey raised $50,000.00. These dollars are  being donated to the nonprofit Trey started in 2015, the Huntington’s Disease Foundation.

The Huntington’s Disease Foundation was founded in 2015 by co-founders Trey Gray, Doug Michael and Anett Pappas. The Foundation is recognized and registered in Texas as a 501 (c) (3) non-profit charity.   The Huntingtons Disease Foundation

To watch the television news report regarding Trey’s concert, please click on link below:

https://www.abc57.com/news/professional-drummer-from-south-bend-raises-money-for-huntingtons-disease

We Can Never Lose HOPE….

Trey wrote a book jacket comment that appears on the back cover of Watching Their Dance.  100% of the profits are being donated to the nonprofit, Huntington’s Disease Society of America, HDSA.  

The book is available on Therese’s author website http://www.theresecrutchermarin.com & many book websites like Amazon

HD Research

Stanford University Huntington’s Disease Study

Kristina Cotter, a Ph.D/M.S. Candidate, Genetic Counseling is spearheading a Huntington’s disease project.  This is what Kristina shared with me.

“This study is Stanford IRB-approved and is an Huntington’s Disease Society of America (HDSA) sanctioned study. I designed it as a part of my master’s research project for Stanford’s genetic counseling program. I’ve been working with Leora Fox at Huntington’s Disease Society of America (HDSA) https://www.linkedin.com/in/leora-fox-28a59562/to help get the word out. It is advertised on the HDSA website at this time, and support group leaders should be sending out information soon.”

What-is-Huntington’s Disease

To participate in the survey, go to:

https://stanforduniversity.qualtrics.com/jfe/form/SV_6tC4lT283jDvqPr

This is how it begins:

To continue with the survey, click on the link above.

We Can Never Lose HOPE……….     

100% of the profits from Watching Their Dance, a nonfiction, inspirational love story while living in the shadow of Huntington’s, is being donated to the nonprofit, HDSA.