Monthly Archives: July 2017

Five “ponderable thoughts” about grabbing “a second chance to live life”

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Five “ponderable thoughts” about grabbing “a second chance to live life”

The author of this short article draws a comparison with Ebenezer Scrooge who was “fortunate to get another chance in life despite a lifetime of despicable behavior towards others.”  The author encourages everyone facing a neurological diagnosis to grab “a second chance to live life and enjoy its splendor and beauty, whatever that is. No pity, no remorse, just joy that every moment should and will be spent making this life a better place then we got it.”

Though this reflection was written by a gentleman who lost his wife to Lewy Body Dementia in September 2016 (and posted to the Lewy Body Dementia Association website), there is nothing LBD-specific (or even dementia-specific) in the message.  And though this was written by a caregiver, the five “ponderable thoughts” apply to those with a neurological diagnosis.  The first and last thoughts are religious.

Robin

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www.lbda.org/node/2852

Excerpts from

The Crux of the Matter
by Alan Silberstein
Monday, January 9, 2017

[This article is] written as a reflection much like “A Christmas Carol” by Charles Dickens. Ebenezer Scrooge was fortunate to get another chance in life despite a lifetime of despicable behavior towards others and live it to the fullest greater good. This disease, for those lucky enough to be diagnosed early truly, has a second chance to live life and enjoy its splendor and beauty, whatever that is. No pity, no remorse, just joy that every moment should and will be spent making this life a better place then we got it.

So, here are a few ponderable thoughts:

First, if nothing else get spiritually centered. For me, that means be right in the Lord. I find peace and comfort in knowing that His light always shines down upon us. No matter what the situation God is in control. When the 23rd Psalms states “The Lord is my Shepherd, I shall not want…” I believe it means just that; everything I will need in this life is provided. The only thing the Lord wants me to take control of is my attitude. No matter how hard, my positive attitude is paramount. Each day brings new adventures – new highlights, new joys. The alternatives take way too much energy.

Second, learn from the past so you can plan for the future. This will allow you to live today. For example, how did raising your children prepare you for the next stage of grand parenting? Just like savings for retirement, did you learn anything from ‘a penny saved, is a penny earned’? We have a future; it is just a little unpredictable. Create a ‘bucket list’ of things you want to do. Then go do it with your family and/or significant other. Each time you check something off a new adventure starts. That is just plain excitement and happiness.

Third, take nothing for granted. You may have an awful diagnosis but let’s put it in perspective. There are things far worse, like if your spouse is near death and there is nothing other than prayer you can do to help. Open your eyes to your surroundings and see things that eluded your sight all these years. Then, relish in them.

Fourth, if you are young enough, plan for retirement and that ‘rainy day’. We are mortals and cannot predict the future, no matter how much we might like to. A proper plan today will lead to peace and security when the time comes. Believe me, it does come and not on your schedule.

Last, each day is precious. Treat it as such. We know what it is like to not know if there will be another. Each day do a random act of kindness. Despite our disease, paying it forward is healthy and makes one appreciate the glory provided to us by God.

Newspaper article on risk of antipsychotics in Lewy body dementia

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This is a good article from a UK newspaper about the importance of proper diagnosis of dementia — Alzheimers, Lewy body dementia, or something else — because of the dangers of antipsychotics in LBD.

That being said, many in our local LBD caregiver support group do find value in atypical antipsychotics.

Here’s a link to the article:

www.independent.co.uk/news/health/lewy-body-dementia-prescription-antipsychotics-thousand-risk-injury-death-drugs-treatment-alzheimers-a7827431.html

Lewy body dementia: Thousands ‘at risk of injury or death’ due to inappropriate prescription of antipsychotics
Prescription of these drugs often worsens symptoms and has been found to increase the risk of death fourfold
Katie Forster, Health Correspondent
Thursday 6 July 2017 11:58 BST
The Independent (UK)

Robin

“Getting It Right At The End Of Life”

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This personal story about the author’s terminally ill mother illustrates the importance of making your end-of-life wishes known and legally supported.

Excerpt:

When—just a few days after her eighty-ninth birthday—my mother was diagnosed with a colorectal mass (we would later learn it was cancerous), she restated to me what I long knew to be her fervent wish: no treatment of any kind beyond symptom relief. NO invasive procedures, NO chemo or radiation, NO life-prolonging treatments. NONE! She wanted only one thing: to spend the rest of her days, however many or few there were to be, in her apartment in her lively and supportive community. My job was simply to help make sure her wishes were honored. As it turned out, this was not so simple at all. Just days after the initial diagnosis, despite my mother’s long-standing, clearly stated, and just-repeated wish, I found myself reluctantly making an appointment for a preoperative examination with a surgeon for a procedure to reroute her intestine around the mass. How had we ever come to even consider this?

The full article is here:

content.healthaffairs.org/content/36/7/1336.full

Getting It Right At The End Of Life
by Dina Keller Moss
Health Affairs
July 2017; Volume 36, Issue 7

Worth reading!

Robin

 

“3 Medical Laws All Caregivers Should Know About”

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“3 Medical Laws All Caregivers Should Know About”

A blog in today’s Caregiver Space (thecaregiverspace.com) briefly describes three medical laws “all caregivers should know about,” including HIPAA, the Stark Law, and legal documentation laws (covering power of attorney, living will, and healthcare proxy).

Robin

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thecaregiverspace.org/3-medical-laws-caregivers-know/

3 Medical Laws All Caregivers Should Know About
by Kayla Matthews
Jul 5, 2017
The Caregiver Space

Medical laws change, but it is important to stay current if caregiving is a responsibility you’ve undertaken for a family member or if it is your profession. There are documents you will need to provide physicians with, as well as decisions to make regarding treatments and facilities.

Here are three of the big ones:

1. HIPAA
HIPAA, the Health Insurance Portability and Accountability Act, came into being in 1996 to help patients gain control over their private information. Only the minimum amount of patient information is available to entities, including caregivers, insurance companies and other health care facilities, unless otherwise directed by the patient.

HIPAA protects patients and holds people accountable for violating the law and patients’ privacy. A violator could spend time behind bars and/or pay a steep fine. However, if a patient requests that their adult child or caregiver accompanies them to a physician appointment or tests, then the provider can release the information. It is clear the patient wants this person to know about their private health information.

The physician has the right to choose who to give pertinent information to if something happens to the patient and they are unable to respond, such as permanent unconsciousness. Even with HIPAA laws in effect, you may want to talk with your patient about a written directive to avoid any miscommunication.

2. The Stark Law
If your patient or loved one is living in a skilled nursing home or assisted living facility, understanding The Stark Law is critical. To avoid conflict of interest and financial kickbacks, The Stark Law puts into effect the protection of Medicare and Medicaid patients. The law states physicians cannot refer patients to a clinic, laboratory or facility and order services in which the provider will receive financial gain in return. This includes a member of a provider’s family.

For example, a physician may be violating The Stark Law if they refer a Medicaid/Medicare patient to a nursing home owned by the physician’s adult child. You want to ensure your patient is receiving the best care and not receiving unnecessary treatment. The Stark Law works to protect patients from unethical practices by enforcing civil fines and penalties and excluding violators from federal health care programs.

If you suspect a physician or facility is violating The Stark Law, you can report the incident to the Office of Inspector General.

3. Legal Documentation Laws
As a caregiver, legal documents are an important part of your responsibility. Your role as a caregiver can be severely limited without proper legal documentation. The following are a few documents you should have on hand and provide copies to your patient’s service providers.

* Power of Attorney: As power of attorney, you can make medical and financial decisions for your loved one as needed. This document allows you to pay bills on behalf of your patient and make decisions regarding treatments when they no longer can make these decisions on their own.

* Living Will: Experts suggest creating a living will before the need arises. This document provides a written record of the patient’s wishes regarding life support and treatments and removes the emotional factor during a crisis.

* Health Care Proxy: If the patient prefers, they can assign a power of attorney to handle their financial responsibilities and a health care proxy to make medical decisions for them regarding treatments. A health care proxy is only used when the patient is permanently unconscious or is in the latter stages of a mental illness.

An elder-law attorney can explain the details of each of the medical laws concerning seniors and caregivers, as well as oversee the legal documentation you need. Before making decisions on behalf of your patient or loved one, make sure you are up-to-date with any changes to the laws.

 

About Kayla Matthews
Kayla Matthews is a health journalist and blogger with a passion for helping others. In addition to The Caregiver Space, you can also find her on The Huffington Post and Tiny Buddha.

Grief tests our resilience and teaches us more about life than death

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Grief tests our resilience and teaches us more about life than death

Today, I came across the website Option B (optionb.org), which is focused on resilience. The website’s tag line is: “Resilience is like a muscle. We’re here to help you build it.”

There’s a thought-provoking article from April 2017 by Arianna Huffington about the need to embrace grief. She writes:

“There are few things that test our resilience more than the death of a loved one. Grief can be isolating and grueling and feel insurmountable. But it’s also true that there is nothing that can teach us more about life than death. And when we allow ourselves to receive the lessons that death can teach us, we’ll be more resilient when facing whatever challenges life brings us.”

Here’s a link to the article:

optionb.org/stories/grief-isnt-about-closure-nor-is-it-something-to-overcome-or-get-past-its-something-to-lean-into-to-embrace-r1pvbfsag

Grief isn’t about ‘closure.’ Nor is it something to overcome or get past. It’s something to lean into, to embrace.
By Arianna Huffington
April 2017
Option B

Robin