Category Archives: Caregiving – General

3 Important Questions and “Practical Tips on Balancing Loss and Connection” (Handout)

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Neuropsychologist Kyrstle Barrera, PhD spoke to the Palo Alto Parkinson’s support group meeting last Wednesday.  She talked about “Balancing Loss and Connection” when coping with a neurodegenerative disease.

She encouraged us to let the answers to the following questions guide how you make your decisions and spend your time:

1.  When do I feel the closest to my loved one?
2.  When is this disease furthest from my mind?
3.  When do I feel the most nourished?

Besides these three questions, check out Dr. Barrera’s handout (below) for the practical tips she offers.

Robin

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“Balancing Loss and Connection”
Kyrstle Barrera, PhD
Handout from 12-10-14 presentation to Palo Alto PD Support Group

Let the answers to the following questions guide how you make your decisions and spend your time:
1.  When do I feel the closest to my loved one?
2.  When is this disease furthest from my mind?
3.  When do I feel the most nourished?

Practical Tips
* Take care of yourself.
* Reminisce with your loved one.
* Talk about the things that are difficult.

* Schedule
– Schedule pleasant activities just like you do appointments and medications
– Schedule time for activities that allow you to be ONLY a spouse/child
– Schedule activities that are minimally impacted by symptoms (movies, music, people watching)

* Continue to socialize/build support network
– Support groups
– In person meetings with friends/family

* Use technology to help reduce your mental load!
– Set alarms
– Create check lists
– Take notes and pictures

* Use technology to help stay connected and keep everyone involved
– Video chat
– Speaker phone

* Prepare in advance
– Conversation topics/questions to ask
– Discuss answers to potential questions together beforehand
– Provide education to those around you, if needed (can be written material, too)
– Don’t avoid the elephant in the room
– Explain symptoms
– Let others know what to expect
– Give others tips on way to maximize communication

* Schedule time each week to emotionally “check in” with yourself and one another

* Take time to look back and gain some perspective on a regular basis (what did you enjoy the last week/month, how can you do more of that?)

* Think about the things “you wish you would have…” and do them.

* Journal

* Consider couples/family therapy

* Utilize your support network
– Accept help when it’s offered
– Delegate responsibilities when you can

“Balancing Loss and Connection” – a few notes, 12-10-14 neuropsychologist talk

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A neuropsychologist spoke to the Palo Alto Parkinson’s support group meeting last Wednesday.  This neuropsychologist was recommended by Charmaine, one of our local CBD support group members.  Her family gained a great deal by working with this neuropsychologist over an extended period of time.

The neuropsychologist is Kyrstle Barrera, PhD; she’s a clinical neuropsychology postdoctoral fellow at the VA Palo Alto.  Her presentation last Wednesday was terrific.  She talked about “Balancing Loss and Connection” when coping with a neurodegenerative disease.  She will be establishing a private practice soon in the SF Bay Area (Palo Alto or Menlo Park, perhaps), and I hope more families (regardless of the neurodegenerative disease) can benefit from working with her.

Here are some notes I took last Wednesday.  Kyrstle did have a one-page handout, which I will type up and post separately.

Robin

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“Balancing Loss and Connection”
Kyrstle Barrera, PhD
12-10-14 presentation to Palo Alto PD Support Group

Kyrstle advises those dealing with neurodegenerative disorders to consider three questions:
1- when do I feel the closest to my loved one?
2- when is this disease furthest from my mind?
3- when do I feel the most nourished?

She says that the answers to these questions should guide your decisions about where to spend your time.

One key goal is to create and maintain connections with others.  Connection is one of the few things that can fill up your fuel tank.  We should all spend more time with the people we feel connected to.

Kyrstle gave some specific suggestions:

* on your daily agenda, schedule in “fun”

* set alarms (on your cell phone, for example) to remind you to “have fun” or “maintain connections”

* take 5-10 minutes each night just before you go to bed to consider what you enjoyed doing that day and how you can do more of that

* say to your family member or friend “let’s give ourselves 10 minutes to just gripe and not offer any tips or suggestions”

* reminiscing with your family member or friend can be wonderful

She encourages everyone to consider therapy.  She notes that “it doesn’t hurt.”  How do you know if you need therapy?  People need therapy for emotional support.  Or they need therapy if they don’t believe they are handling situations in the right way.  Or they need therapy if others are not understanding them.

Seeing the ‘Invisible Patient’ (the caregiver)

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The author of this New York Times blog post argues that the MD of a patient with dementia or other serious medical condition should occasionally ask the family caregiver if the caregiver is eating properly, sleeping enough, depressed, etc.  See:

newoldage.blogs.nytimes.com/2014/11/17/seeing-the-invisible-patient/

The New Old Age: Caring and Coping
Seeing the ‘Invisible Patient’
The New York Times
By Jane Gross
November 17, 2014

In my mind, this does not seem realistic given time constraints or appropriate since the family caregiver is probably not the MD’s patient as well.

Indeed, a neurologist I spoke to about this said:

I think it is unethical to ask questions about specific health problems or indirectly treat a family member, particularly in regards to mental health like depression. Asking general questions or general statements like ‘make sure you are taking care of yourself as well’ or encouraging them to see their own doctor regularly, or telling them about caregiver services and support groups is fine and should be encouraged.  The problem is always time of course. We don’t have enough time to ask the patient everything necessary, let alone the family.

Robin

Finding out “not wanting to live hooked up to machines” means; mediation resources; etc.

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Susan Weisberg, a wonderful hospice social worker who had a family member with Lewy Body Dementia, forwarded me this recent blog post in the New York Times.

The blog post is about a medical ethics professor who is part of a family that did not adhere to her father’s wishes for “not wanting to live connected to machines.”

The author makes three points:

  • “What I hadn’t considered before my father’s heart attack was the precise meaning of ‘not wanting to live hooked up to machines.’ When people say that, it’s unclear whether they mean that they don’t want to live for the rest of their days in this condition, or that they don’t want to live for even a few weeks like that. The question of “how long?” is one we would all do well to consider.”
  • “The biggest lesson I have learned is that every family should not only discuss end-of-life wishes but should act on them by filling out an advance directive. If my father had completed one, his end might have played out differently. By the time we told the medical staff that he didn’t want to be hooked up to machines, he already was, and we acquiesced in letting things take their course, with the hope that he might improve.”
  • “What I wished we had had…was a conversation with his physicians about end-of-life possibilities right from the beginning.. … Honoring my dad’s wishes meant taking him off the ventilator while we still had that option.  The timing was key, but no one explained this or advised us how to determine when the time would be right. We now shudder that, because of hope, we were slow to see this choice and might so easily have missed it. … [Confronting] the end from the beginning might alleviate some of the inevitable feelings of guilt that arise when people make the decision to end life support.”

You can find the article here:

well.blogs.nytimes.com/2014/12/01/hoping-for-a-good-death/

Family
Hoping for a Good Death
New York Times
By Elizabeth Reis
December 1, 2014 7:05 pm

Note that the POLST form in California (capolst.org) gives people an opportunity to say that either they want no treatment, they want full treatment, or they want treatment for a limited amount of time.  If “limited amount of time” is selected, the person may state how long that is, whether it be a few days or a few weeks.

Anyone who is frail or who has a serious medical condition should complete a POLST form.  All of us should complete an advance care directive.

 

Robin

 

Start any conversation with an older relative by asking them about what care they want

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This email is of general interest to all caregivers though the newspaper article and movie mentioned are targeted at adult children (or grandchildren) of aging parents.

In this recent New York Times article about a movie called “Black Heirlooms,” we are told that the movie’s author wants to encourage inter-generational conversations about how parents (or grandparents) want to divide their assets when they are gone.

One person who saw the film offered this excellent advice:  “Start any conversation with an older relative by asking them what sort of care they might want while they are still alive. That way, you’re leading with your concern for them and won’t arouse as much suspicion about intent or greed.”

Only read the New York Times article below if you’d like to learn more about the film and story behind the film.  Otherwise, I think that viewer’s advice is the main point of the article for caregivers.

www.nytimes.com/2014/11/29/your-money/estate-planning/a-respectful-deference-to-elders-curdles-into-a-fight-over-assets.html

Estate Planning
A Respectful Deference to Elders Curdles Into a Fight Over Assets
New York Times
By Ron Lieber
November 28, 2014

Robin