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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   

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.

More on Dr. Kleinman:





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:

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:

We Can Never Lose HOPE…….

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:

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 & many book websites like Amazon



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:

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 & many book websites like Amazon





             May is Huntington’s Disease Awareness Month

As the month of May comes to a close, I wish to honor the caregivers who lovingly cared or are caring for a loved one through the long, progressive disease process for the cruelest disease on the planet; Huntington’s disease; a fatal, hereditary disorder that progressively destroys the nerve cells in the brain. It’s describes as having ALS, Parkinson’s and Alzheimer’s disease at the same time. There is no cure or therapy and HD attacks children as well as adults.

Video on What is Huntington’s Disease?  When an individual receives a positive test result for Huntington’s disease, the individual, spouse/significant other and the whole family’s life changes in a second. The task of caregiving may not begin immediately, but at some point the individual will require help performing their ADL’s; Activities of daily living are routine activities people do every day without assistance. There are six basic ADLs: eating, bathing, getting dressed, toileting, transferring and continence.

“Caregivers walk their own unique path through chronic illness – a role that is simultaneously exhausting and meaningful, isolating and joy-filled. Life as a caregiver can be difficult but it is deeply valued.”  Chronic Joy Ministry

Info on managing the care of an individual with HD:

Therese’s memoir/nonfiction book, Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s, is available on her author website   & on Amazon, B&N, & in Kindle, Kobo, Nook, iBooks format.

100% of the profits from the book is being donated to Huntington’s Disease Society of America (HDSA).

#LetsTalkAboutHD   #WeCanNeverLoseHOPE







Photo by Chronic Joy Ministry on / CC BY-NC


Caring for the Caregiver

When I was working in hospice at our local hospital in Auburn CA, the interdisciplinary hospice team addressed the needs of the patient and the family. The family unit was the focus of the care we provided. Caring for a loved one strains even the most resilient people, so the wellbeing of the caregiver, or carepartner, is vital to the patient remaining at home with their family; where their memories were made.  Click here for info on hospice care:

When I’ve attended a Huntington’s Disease Education Day in the past, there always is a discussion about the wellbeing of the carepartner.  I picked this brochure up at the Education Day at Kaiser Permanente in Sacramento last year and thought I’d share it with you.

CAREGIVER’S CORNER WEBINARS-Presented by Huntington’s Disease Society of America (HDSA)  

Therese’s memoir/nonfiction book, Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s, is available on her author website   & on Amazon, B&N, & in Kindle, Kobo, Nook, iBooks format.

Therese and John donated $9,015.00 to HDSA in December which was the profit from the book since it was published in April 2017.  

Caregiving, Hospice

Hospice Care and Huntington’s Disease

The 2nd organization close to my heart is the National Hospice and Palliative Care Organization (NHPCO) . Of course, the Huntington’s Disease Society of America is #1.

Since I was a healthcare professional for 20 years, 10 years in hospice care, I want to speak about the service hospice can provide to a family reeling from the anticipatory loss of a loved one. The majority of Americans say they would prefer to be cared for and die at home and yet only 38% of us receive hospice care.  Supporting a persons wish to die at home is one of the greatest gifts a family17131086854_9560cb9d03_z can give to their loved one.  Hospice is an interdisciplinary team approach that supports the family and the patient.  Hospice strives to keep the patient free of pain, have the highest quality to his/her life, teaches the caregivers how to  to care for a bedbound, terminally ill person, offers counseling to the patient and/or the family members, bestows a chaplain if requested and respite for a few hours a week.



Medi-Cal  (California State Funded for low income)

AND most private insurances have a hospice benefit so there is usually no out of pocket costs to families. Most hospice programs are non-for-profit, but there are some for profit hospice programs.  Just be aware, there may be costs associated with a for profit hospice.

My two sister-in-laws, Marcia and Cindy Marin, were both under the care of hospice, at different times; the hospice organization I was employed by. My best word of advice to anyone caring for a loved one with HD, and they’ve been struggling for many years and your family feels he/she is declining, is to call a hospice program near you, and ask to have him/her evaluated for hospice care.  You can never be admitted to hospice too early.  Hospice can be a huge support to the caregivers.

To locate a hospice program near you in California please see:   or

Have a good day!   Therese

Caregiving, Family

Tips to Keeping Your Loved One Safe At Home

On a hot July day in 1991, John and his father moved Marcia, my sister-in-law, to an apartment in Auburn, aboutScan 4 10 minutes from our home and down the street from where John worked.  She had lived in Sacramento for about 3 years and had been living with Huntington’s disease for 6 years.  We were worried about her being so far away from us and her reactions were compromised and her driving had become unsafe.  We feared she might have an accident and hurt herself or someone else. Marcia, a brave, kind, gentle soul, never complained when we made suggestions, like asking her to hand over the car keys to us.  I’m grateful she allowed us to help her stay independent.

Marcia Louise Marin

Marcia Louise Marin

At that time, I was the Lifeline Manager, at Auburn Faith Community Hospital and I was assisting people just like her; folks wanting to stay safe and independent in their own home for as long as possible.  So, the first thing we did after moving her in was to install Lifeline and asked her to never take the waterproof button off.  We were listed as her first responders and the manager of the apartment complex as second.  She was very unsteady on her feet and we feared she’d fall and hurt herself, so Lifeline gave her access to help.

So, if your are worried about a loved one living alone and their safety, these medical alert systems are very inexpensive and will give you peace of mind.

There are many similar products on the market now so here are links to a few of them.    search

Have a good day!   Therese

Caregiving, Huntington's Disease


IMG_0655In 2009, after my three sister-in-laws, mother, and father-in-law had died, I was diagnosed with PTSD (Post Traumatic Stress Disease), having lived with unimaginable stress for thirty-one years.  (John was at-risk for Huntington’s disease like his sisters.)  After being a caregiver on and off during those years, and choosing to be, the stress had taken its toll. My therapist prescribed Paxil and I looked for ways to begin to heal.

More than 34 million unpaid caregivers in the United States provide care to someone age 18 and older who is ill or has a disability (AARP, 2008). Caregivers must seek ways to stay healthy, otherwise, the loved one they’re caring for could end up in a skilled nursing facility.

I found my healing therapy in NATURE!

Have a good day!   Therese