“Actually, let’s not be in the moment” (NYT)

Someone in the local support group sent this to me, sort of tongue in cheek.  She said that I’m always promoting “mindfulness-based stress reduction” at support group meetings and asked that I give equal time to this article about NOT being in the moment.  So here’s a link to last Sunday’s New York Times article for equal time!


SundayReview | Opinion
The New York Times
Actually, Let’s Not Be in the Moment
By Ruth Whippman
November 26, 2016


Is Alzheimer’s Disease a Uniquely Human Disorder? (webinar)

Alzforum is hosting a webinar on Wednesday, December 7th at noon eastern time on the topic of “Are we humans alone in developing Alzheimer’s disease?”

Other primates and even dogs accumulate amyloid plaques as they age, but seem surprisingly resistant to neurofibrillary tangles, neurodegeneration, and full-blown dementia. What sets us apart from other animals, and what can we learn from their resilience?

Join Lary Walker, Marc Dhenain, Elizabeth Head, Patrick Hof, Cynthia Lemere, and Peter Nelson for an Alzforum Webinar.  For more info and a link to the registration page, check out:



Hospital Discharge Planning (Notes from caregiver conference)

Brain Support Network volunteer Denise Dagan attended the Avenidas Caregiver Conference in late October 2016.  She took some notes from the various talks.  Here are Denise’s notes from the talk on “Patient Rights and the Discharge Planning Process” presented by Paula Wolfson, the Avenidas senior center social worker.

The main resource mentioned by Ms. Wolfson was the Medicare website and its explanation of the discharge appeal process:


The remainder of Denise’s notes are copied below.


Notes from Brain Support Network volunteer Denise Dagan:

The last information session I attended at the Avenidas Caregiver Conference was titled, “Patient Rights and the Discharge Planning Process.”  It was presented by Paula Wolfson, a social worker with Avenidas.  We learned to “…effectively mediate and negotiate [hospital] discharge plans.”  Ms. Wolfson gave us so much related information I could not possibly summarize it all here.

Through several hospitalizations for my parents, myself, and my daughter, I’ve never heard of, nor been invited to, a discharge planning ‘meeting’.  Whether an actual meeting happens, all of these people are involved in the discharge process.  Any one of them can question the readiness of a patient for discharge and slow, or stop the process until all requirements are in place for a safe discharge that meets all the patient’s recovery needs.

– The physician, who recommends and writes the discharge orders

– The physical, occupational and speech therapist team, to determine if the patient is at risk for falling or not able to perform the activities of daily living independently, and make recommendations for in-home or skilled care upon discharge

– The social worker, who reviews the patient’s social supports, housing, medical follow up resources, transportation, financial and legal concerns

– The nurse case manager, to assists with skilled care discharge placements and insurance coverage

– The patient and his/her designated caregiver, who should evaluate the discharge plan to determine if it accommodates all personal care, safety, medical follow up, transportation, and financial concerns for the patients recovery.

If you feel discharge is premature or not safe you have the right to appeal.  Consult with the nurse case manager or social worker.  They can arrange for you to have a conversation with the physician to extend the discharge until your concerns are addressed. This often works well because the Medicare appeals process is a major hassle for the hospital.  If the doctor is dismissive of your concerns, let him/her know you are prepared to file an appeal with Medicare.  Upon hearing that news, he or she should postpone the discharge for a day, or two.  Start working with the discharge team immediately to resolve your concerns.

If you feel you must appeal, during the admissions process and a few days prior to discharge you receive information about how to file a Medicare appeal.  If you can’t find it, request the “Important Message from Medicare” from the hospital admissions or business office.  This is an instructional guideline on appealing your hospital discharge and will explain the appeal process.  It gives you a phone number to call Medicare and advocate for the appeal which will trigger an independent review of the discharge decision and delay in the discharge date.  Medicare will pay until the appeal is resolved.  Complete information is available at:


This website also has information about filing a complaint (grievance) about the quality of care or other services you get from a Medicare provider, and how to file an appeal if you have issue with a plan’s refusal to cover a service, supply, or prescription.

“Grieving the Living!” (caregiver grief)

The author of this article, Linda Jordan, manager of Duke Community Bereavement Services, writes beautifully about caregiver grief.  And she rejects the term “anticipatory grief,” stating that the losses are here and now.  (Losses are to independence, physical control, speech, memory, cognition, etc.)  The author is focused on Alzheimer’s caregivers.  I’ve replaced the term “Alzheimer’s” with “neurological disorder” as I believe the concepts apply equally as well.  Here’s an excerpt:

“[As] long as the person with [a neurological disorder] is alive, caregiver grief, though appropriate, is generally not recognized or sanctioned. The community is more likely to associate grief with a physical death. Yet, grieving the living is real; it is constant and complex; and it is important that caregivers receive help in managing it.  When grief is acknowledged… the concept most often used is anticipatory grief. Although this term has value, the losses incurred with [a neurological disorder] are not just future; they are actual and profound in the present. Each pre-death loss in this progressive disease is compounded by all previous losses and introduces new tangible losses, as well as potential losses in the future.”

The remainder of the article encourages healthcare professionals to apply Therese Rando’s six grief processes in working with family caregivers experiencing caregiver grief.  Some interesting stories are shared.  Here’s a link to the full article:


Grieving the Living!
North Carolina Medical Journal
Volume 66, Number I
By Linda E. Jordan, DMin, CT
January/February 2005


“7 Signs It Is Time to Consider a Senior Care Community”

This article is written from the perspective of a caregiver for someone with dementia (especially Alzheimer’s or someone with memory problems) but most of the article applies to a caregiver for any person.  The author is The Pines of Sarasota, which is the educational institute that partners with dementia expert Teepa Snow.

These are the seven signs for someone to consider a long-term care situation:

1. Caregiver Stress.  This is detrimental to your health, and looking after your own health is the best thing you can do for the person in your care.  So, “if your stress levels remain high over an extended period of time, be honest with yourself.”  Consider a change to your living situation, or get more support.

2. Shadowing.  If the person in your care follows you around, this is wearing on the nerves, increasing conflict and adding to caregiver stress.

3. Home Safety & Wandering.

4. Wandering & Elopement.  Wandering is leaving a safe environment.  Elopement is leaving with intention, such as wanting to return to one’s ‘own’ home.

5. Sundowning, which is “increasing confusion and agitation usually occurring around sunset in people with some types of dementia.”  It can be caused by over-stimulation and fatigue.  Senior care facilities can reduce sundowning.

6. Aggression.  Whether verbal, physical, or sexual, aggression may be too much to handle for an in-home caregiver.  [Robin’s note:  This is especially a problem in our Lewy Body Dementia caregiver group.]

7. Changing Care Needs.  Be aware that the needs of the person in your care may eventually surpass your physical capabilities as the disease progresses.  Seek help before you harm your own well being.

Here’s a link to the full article:

7 Signs it is Time to Consider a Senior Care Community
The Pines of Sarasota Education & Training Institute