Category Archives: Caregiving – General

40 Requests of Family, Friends, and Care Team (Jill Bolte Taylor, PhD)

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Here’s another list of requests that those with neurological
conditions may have of their family, friends, and care team.

This list of 40 items was written by Jill Bolte Taylor, PhD, and is
part of her book titled “My Stroke of Insight.”  I highly recommend the book, if you haven’t read it before.  Or there is a good online video of Dr. Taylor giving a TED Talk.

I don’t think all 40 items will apply to those with PSP, DLB, MSA, or CBD.  For example, Dr. Taylor’s #17 is “Ask me multiple-choice
questions. Avoid Yes/No questions.”  Initially the maximum number of choices my father (PSP confirmed upon brain donation) could handle was two.  Later, he could only tolerate yes/no questions.  Later, when he could no longer respond, we’d tell him what choice we were making on his behalf,and said we thought it was the choice he would make.

Below, I’ve listed a few of Dr. Bolte Taylor’s 40 requests.

Robin

Excerpts from

“My Stroke of Insight”
by Jill Bolte Taylor, PhD

1. I am not stupid, I am wounded. Please respect me.

2. Come close, speak slowly, and enunciate clearly.

3. Repeat yourself—assume I know nothing and start from the beginning, over and over.

4. Be as patient with me the 20th time you teach me something, as you were the first.

5. Approach me with an open heart and slow your energy down. Take your time.

6. Be aware of what your body language and facial expressions are
communicating to me.

7. Make eye contact with me. I am in here—come find me. Encourage me.

8. Please don’t raise your voice—I’m not deaf, I’m wounded.

9. Touch me appropriately and connect with me.

10. Honor the healing power of sleep.

11. Protect my energy. No talk radio, TV, or nervous visitors! Keep
visitation brief (five minutes).

12. Stimulate my brain when I have any energy to learn something new, but know that a small amount may wear me out quickly.

Therapy Even if No Improvement – Big Change to Medicare Rules

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Back in October 2012, it was reported that a settlement had been proposed that would affect skilled nursing home stays as well as home health and home therapy services for those with Medicare.

This Monday, the New York Times reported that Congress also took action to allow exceptions to what Medicare pays for physical, occupational, and speech therapy.  Plus, the proposed settlement had been approved by the court; Medicare is now prohibited from denying patients coverage for “skilled nursing care, home health services or outpatient therapy because they had reached a ‘plateau,’ and their conditions were not improving.”

This will have an impact on Medicare beneficiaries who have PSP, CBD, MSA, and DLB diagnoses.

The Center for Medicare Advocacy (different from the Centers for Medicare & Medicaid Services), has a webpage devoted to “explaining how to challenge a denial of coverage that is based on the lack of improvement.”  See:

www.medicareadvocacy.org/take-action/self-help-packets-for-medicare-appeals/

And, the Center for Medicare Advocacy “advises beneficiaries to show a copy of the settlement — also available from the Web site — to your health care provider at your next physical therapy appointment if you are concerned about losing Medicare coverage.”

See a highlighted copy of the settlement:

www.medicareadvocacy.org/wp-content/uploads/2012/12/Settlement-Agreement-for-Web.pdf

Here’s a link to the NYT article:

newoldage.blogs.nytimes.com/2013/02/04/therapy-plateau-no-longer-ends-coverage

The New Old Age: Caring and Coping
Finances & Legalities 
Therapy Plateau No Longer Ends Coverage
New York Times
By Susan Jaffe
February 4, 2013, 7:49 am

Robin

How to get loved one to accept help?

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Stacey Gordon is a geriatric care manager.  She recently posted about how to get a loved one to accept caregiving assistance. Here are excerpts from that post:

The word “caregiving” is intensely evocative, and identifying a loved one’s need for care can be emotionally stirring. … We may have watched someone fall and pick themselves up, stubbornly refusing to either ask for or accept our help, and feel an increasing sense of defeat at our inability to give our loved ones the help they need.

In my role as geriatric care manager, I am often contacted after loved ones watch an older adult struggle and reject their offer of help. Concerned clients ask “how do I get my loved one to accept the kind of care I think is good for her, or any care whatsoever?” This very question in most cases, is misconstrued. Regardless of how compromised you feel your loved one might be, and no matter how much of a challenge their stubbornness might pose, you must be patient. Your job is to initiate and then revisit a conversation about care. The conversation should begin with the type of care they think is best for them, while offering your opinion in a way they can hear. You can then, through discussion, and with patience, strive for a resolution all will embrace.

One caveat: If you have cause for concern about a loved one in a life threatening situation, posing an imminent danger to themselves or others, clearly a medical professional should be notified immediately, to recommend emergency care.

By no means should your loved one be in the position of having care foisted upon them, as long as they are able to make an independent decision. Indeed, long after we may question a loved one’s judgement, it may well be possible for that person to make a viable decision for care, on their own terms. It behooves us to respect an older adult’s lifetime of experience, self determination, dignity and expectations for the next phase of their life. It’s our job to think about making decisions for care with them, and if needed, support them to enact their plan.

Here’s a link to the full post if you’d like to read all of it:

www.huffingtonpost.com/stacey-gordon/mushroombarley-soup-and-o_b_2348296.html

Considering Caregiving
Huffington Post
by Stacey Gordon, Consultant, Care Manager, Advocate, Mediator
12/21/2012

Robin

“Details of the Heart” (requests made by a person with health issues)

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One of our local support group members, Marty, sent me information on this blog post today.  Within this blog post is a list called Details of the Heart.  This list was created by a geriatric care manager, Stacey Gordon, for a client named Ann.  Ann used this list in screening potential candidates for a home care aide.  Ann needed to hire an aide to help her in the last year of her life.  The list addresses what was important to Ann in an aide and caregiving companion — “open communication, sensitivity, fairness and patience.”

“Ann so related to the list of ‘Details of the Heart’ she recited it aloud to potential caregivers to gauge their reaction. Once she hired her caregiver, she revisited the details throughout the caregiving process.”

Many of the nine items on the “Details of the Heart” list are
appropriate for anyone — whether they are hired aides, family
members, or friends — who wants a caring relationship with another person who may have health issues.

I’ve copied the list below from Stacey Gordon’s blog post.  I think
that’s the key to the blog post but if you’d like to read the entire
post, see:

www.huffingtonpost.com/stacey-gordon/end-of-life-conversation-caregivers_b_2547547.html

Robin

 

“Details of the Heart”
by Stacey Gordon
Posted: 01/30/2013 6:56 am
Huffington Post

1. Please make eye contact with me, and look at me often. Don’t ever make me feel invisible.

2. Please ask me before you touch my body, especially in sensitive places.

3. Please have a tremendous amount of patience with me.

4. Please tell me when you are worried about me, and why. Don’t tell others first.

5. Please help me keep my mind active. Talk to me, read to me, engage me on topics that interest you and ask me about my interests.

6. Please remember that I am an adult, and ask me to choose how to plan my days.

7. Please call me if you will be late, or if you are sick and help me
by calling one of our substitute caregivers. Remember that I cannot be left alone.

8. Please know that I will respect your privacy and I would like you to respect mine.

9. Please know that I thank you for caring for my body and my heart.

 

Eight “cures” to reduce suffering and cost of dying (SJMN, 12-29-12)

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Lisa Krieger has a wonderful series in the San Jose Mercury News on the cost of dying (mercurynews.com/cost-of-dying).  Local support group member Barbara, who was quoted in one of the earlier articles as a Lewy Body Dementia caregiver, sent me a link to the final article in the series.  It was published at the end of 2012.

Lisa Krieger says that

“Our conversation has taught us that, yes, there is a cure for the cost of dying in America. It will reduce suffering and expense…”

She lists eight “cures”:

Cure 1: Take charge of our deaths by putting wishes in writing

Cure 2: Involve entire communities in commitment to planning

Cure 3: Encourage doctors to talk more frankly about choices

Cure 4: Pay doctors to help patients decide what’s best for them

Cure 5: Avoid costly care that won’t prolong or improve life

Cure 6: Offer better comfort care to patients in their final days

Cure 7: Pay families to help at home instead of using hospitals

Cure 8: Broaden use of comfort care through Medicare, insurance

In Cure 1, the author points out that:

“While 82 percent of Californians say it is important to have end-of-life wishes in writing, only 23 percent of us have done so, according to a poll by the California HealthCare Foundation.”

Hopefully you’ve all — whether you have a neurological disorder or not — have completed an advance care directive!

In response to an earlier article in the series, local support group member Richard encouraged everyone to consider purchasing long-term care insurance as a way of covering some of the expenses of are. Caregivers may want to consider such insurance for themselves.

Here’s a link to the article about the eight “cures”:

www.mercurynews.com/bay-area-news/ci_22278023/cost-dying-discovering-better-way-final-days

Cost of Dying: Discovering a better way for final days
San Jose Mercury News
By Lisa M. Krieger 
Posted:   12/29/2012 04:00:00 PM PST
Updated:   01/04/2013 08:27:57 PM PST

Robin