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Caregiving

Honoring Huntington’s Disease Caregivers During November

November is National Family Caregivers Month, a time to recognize and honor family caregivers across the country.

Author Therese Crutcher-Marin

As a former caregiver to my two (2) sisters-in-law who had Huntington’s disease, Marcia and Cindy Marin, there was contentment, and sadness, in caring for these two ladies that I loved. My personal goal was to honor their dignity, keep them independent and comfortable as long as possible. The sadness I felt was heartfelt watching them slowly lose everything, their independence, unable to work, unable to do activities of daily living; bathing or showering, dressing, getting in and out of bed or a chair, walking, using the toilet, and eating.

Caregivers who care for Huntington’s disease (HD) loved ones have a huge challenge; HD’s journey is long, 10-20 years. The neurodegenerative diseases, HD, ALS, Parkinson’s, Alzheimers can stretch out for years.

This takes a toll on caregivers so caregivers must take care of themselves. The reality is, if you as a caregiver become ill, stressed where you cannot take care of your loved one, what happens to them?

This blogs main purpose is to provide a link to HD Caregiver Support Groups. They are online so easily accessed. Here are a couple coming up.

We Can Never Lose HOPE…..

I’m a Huntington’s disease (HD) advocate, Chair for the HDSA San Francisco Bay Area Affiliate, a blogger and an author. 100% of book sales is donated to the nonprofit, HDSA.

Amazon link- Watching Their Dance

November 16, 2022 by crutcht

Caregiving, Love

Late Stage Huntington’s Disease and Hospice

May is Huntington’s Disease Awareness Month

In late stage Huntington’s Disease (HD), individuals require assistance in all activities of daily living; dressing, toileting, bathing, eating, walking and getting out of bed or a chair. Although they are often nonverbal and bedridden in the end stages, it is important to note that people with HD seem to retain some comprehension. 41,000 American’s are symptomatic and approximately 200,000 live at risk of inheriting the mutated huntingtin gene that causes the disease.

The last ten (10) years in my health care career, I worked in hospice at a small hospital in Auburn CA. Hospice care is a special kind of care that focuses on the quality of life for people and their caregivers who are experiencing an advanced, life-limiting illness.

My two (2) sisters-in-law, Marcia and Cindy were on my hospice program (10 years apart). For the last four (4) years of their lives, they resided in a residential care facility in Auburn; the last two (2) years in bed needing total care. They received wonderful care from the nurse who owned the facility and having hospice overseeing their care gave John and I so much comfort.

My advice to HD families caring for their loved one is to make it clear to the doctor that you want hospice care when appropriate. When the hospice program receives the referral from the doctor, they will make a visit and evaluate your loved one and admit him/her to hospice care.

Kaiser Hospice Santa Clara Ca

Stanford Medicine Hospice

UCSF Medical Center

We Can Never Lose Hope…….

May 26, 2022 by crutcht

Caregiving, Grief, Love

To the Hobbs Family On The Loss Of Bryan To Huntington’s Disease

I want to express my sincere condolences to the Hobb family after losing Bryan to Huntington’s disease on April 5, 2022. The Hobb’s family has posted on Facebook their loss over losing their dad and the wife, Deb, over losing the love of her life, Bryan. They are truly a family that loved this man deeply.

I met Deb Wilson-Hobbs in April 2017 at the Help 4 HD convention in Elk Grove, CA. I had just published my nonfiction book, Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s, and Katie Jackson, President of Help 4 HD, allowed me sell my book at the event. (the profit I made that day from book sales, I donated to Help 4 HD)

I remember sitting at the table at the convention and Deb walking by. She stopped to look at the book and asked what it was about. I said “it’s my husband and my love story while living at risk for Huntington’s disease (HD)”. Story is the key word, because she looked at me and said, “why do I want to read your story when I have my own”? Even though I said, “100% of the profit from the book sales today is going to Help 4 HD, and from then on to Huntington’s Disease Society of America (HDSA), it didn’t matter and I totally understood where she was coming from.

That year, I was visiting all the HD support groups in Northern California and I saw Deb again at the Chico group. Then in 2019, Deb and her family, organized a HDSA Team Hope Walk in Chico, CA where they lived. John and I attended to help with the event and they raised $8,000.00, I believe, and I got to meet Bryan. It was a lovely park and the local news came out and interviewed Deb and her family.

We Can Never Lose Hope…….

April 27, 2022 by crutcht

Caregiving

When Loved Ones With Huntington’s Disease Need To Be Placed

At our last HDSA San Francisco Bay Area Affiliate Board meeting, I had invited Natasha Boissier, social worker who facilitates the monthly Huntington’s Disease Society of America El Cerritos Huntington’s disease (HD) support group, to give insights into the challenges of Huntington’s Disease families.

One of my questions was, “what is an issue that comes up over and over with the participants in the support group?” Her answer was, “Placement when caregivers are no longer able to care for their loved one.”

There are so many facets to this issue when HD families are confronted with this dilemma.

Lora, Cindy and Marcia Marin

And I can relate to what families go through because John and I were accosted with this tough decision with Marcia and Cindy, my sisters-in-law, who had HD.

Some of the concerns might be: (every family is different and deals with it in their own way)

How can we find the right facility?
How are we going to pay for the care in a skilled nursing home/residence care facility?
Is this the right time to move him/her? The emotional toll on family members making this decision is difficult and heartfelt. Some worries might be:

Am I giving up on my loved one?
Is death imminent at this time?
Will the care be loving and kind?
Will my loved one understand?
Can I handle another loss?

HDSA has online support groups for caregivers specifically. Please visit upcoming meetings here:

We Can Never Lose Hope…….

April 20, 2022 by crutcht

Caregiving, Love

Huntington’s Disease Slowly Takes Away Independence

John and I stood by his three (3) sisters, Lora, Marcia and Cindy in the slow decline caused by Huntington’s disease (HD). I describe the slow decline as losses; loss of the ability to drive, to dress yourself, to put your makeup on, to work, to pay your bills, feed yourself, talk. Because of these losses, one is unable to manage day to day life and perform activities of daily living, which compromises their independence. (Activities of daily living (ADLs) are basic actions that a normally functioning person performs every day. The six standard ADLs are bathing, dressing, toileting, transferring (moving to and from a bed or a chair), eating, and continence.)

As these losses occur in a person with HD, which can be over a 20 years, caregivers as well as those declining, carry grief in their hearts. I did, especially with Marcia as I managed her care. Marcia’s decline was difficult for me because in all the years I had known her, she took pride in her appearance and was the most stylishly dressed woman I knew. She was a professional at AT&T in San Francisco for 17 years, so when she had to switch to pants with an elastic waist, she couldn’t manipulate a zipper, and had to replace her fashionable shoes with tennis shoes with velcro, my heart became heavy.

We Can Never Lose HOPE………

I’m a Huntington’s disease advocate, Chair for the HDSA San Francisco Bay Area Affiliate, a blogger and an author. Visit my website: https://theresecrutchermarin.com

Please make a donation this holiday season to the nonprofit, Huntington’s Disease Society of America, to help fight HD.

November 30, 2021 by crutcht

Caregiving

Caring for the Chronically Ill in America

On December 1, 2019, the Wall Street Journal printed an article that really hit home.

Dr. Arthur Kleinman, professor of medical anthropology and psychiatry at Harvard Medical School, is the author of the article:

“Treating Disease Is No Substitute for Caring for the Ill“.

“The American health-care system focuses overwhelmingly on curing acute problems. It needs to do far more to provide ongoing support for patients with chronic maladies.

The U.S., in effect, has two health systems. One addresses disease, the science of what makes us sick; the other addresses illness, the human experience of being sick. Disease demands treatment, while illness calls out for care.”

40-50 millions of Americans act as family caregivers. Included in those millions are caregivers for a loved one with Huntington’s disease (HD). HD is a rare, fatal, genetic brain disorder that has all the symptoms of ALS, Parkinson’s and Alzheimers at the same time. There is NO CURE. More on Huntington’s disease-hdsa.org

Custodial Care, a non-medical care that helps individuals with their daily basic care, such as eating and bathing. Custodial care for an individual is generally recommended by authorized medical personnel, but providers of custodial care are not required to be medical professionals.

Custodial care at home is typically covered only under long-term care (LTC) insurance, not by Medicaid, even though home care is cheaper than a nursing facility.

Lora, Cindy, Marcia Marin

Unfortunately, for HD families, insurance doesn’t pay for custodial care, unless they have LTC, so family members provide the care for their loved one. HD patients can live up to 20 years with the disease and need custodial care for years. I for one can vouch for this as my two (2) sisters-in-law each struggled with HD for 17 years. Luckily, my family was able to pay for private caregivers but not everyone can do this.

We Can Never Lose HOPE………..

Visit my author page and read about my HD journey. https://theresecrutchermarin.com

More on Dr. Kleinman: https://en.wikipedia.org/wiki/Arthur_Kleinman

December 12, 2019 by crutcht

Caregiving, Hospice

November Is Hospice Month

Every November for the last ten (10) years of my healthcare career, was focused on promoting Hospice Care in Sutter Auburn Faith Hospice service area. What is Hospice?

Since I became a volunteer for the nonprofit, Huntington’s Disease Society of America (HDSA), I’m pleased Hospice care is talked about more openly to Huntington’s disease families. Hospice care supports the patient and the family.

We live in a society that doesn’t like to discuss death, so I like to post information that can help families when confronted with a terminal disease diagnosis. It’s good to know that Medicare & Medicaid have a hospice benefit. Most private insurance have one also. The Outreach Committee that I managed took advantage each November to promote hospice care, educate the community and visit doctors offices. Patients can be admitted to hospice with a referral from a doctor who believes the patient has six months or less to live. Article: When-is-it-time-to-contact-hospice

Article: huntingtons patients would benefit from more hospice involvement researchers argue

To watch a video on Hospice Care, visit: https://youtu.be/sYG5VqRvPiU

Therese at the 2018 HDSA Annual Convention in LA.

I’m a Huntington’s disease advocate and a hospice advocate. My two (2) sisters-in-law, Marcia and Cindy, who had Huntington’s disease, were on my hospice program and died peacefully with no pain.

You can read about my journey with Huntington’s disease and my hospice work on my author website: https://www.theresecrutchermarin.com

We Can Never Lose HOPE…….

November 6, 2019 by crutcht

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.