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Caregiving

Caregivers

             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.  http://www.hdsa.org

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:    https://caregiver.com/articles/huntingtons-caregiver-guide/

http://hdsa.org/wp-content/uploads/2015/04/CaregiverGuide_Mid_Late_StageHD.pdf

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  http://www.theresecrutchermarin.com   & 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 Foter.com / CC BY-NC

Caregiving

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:  https://www.nhpco.org/

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)

  http://hdsa.org/living-with-hd/caregivers-corner-webinars/  

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  http://www.theresecrutchermarin.com   & 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)         http://www.nhpco.org/ . Of course, the Huntington’s Disease Society of America is #1.    http://hdsa.org

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.

Medicare    https://www.medicare.gov/what-medicare-covers/part-a/what-part-a-covers.html

AND

Medi-Cal  (California State Funded for low income)   http://www.dhcs.ca.gov/services/Pages/default.aspx

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:  http://cahospicefoundation.com/   or   http://www.nahc.org/haa/

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.  http://www.consumerreports.org/cro/2014/06/what-to-look-for-in-a-medical-alert-system/index.htm

There are many similar products on the market now so here are links to a few of them.    http://www.lifealert.com/    https://www.alert-1.com/           https://www.lifeline.philips.com   search

Have a good day!   Therese

Caregiving, Huntington's Disease

Nature

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