“Little Wished-for Deaths” (beautiful caregiving story)

This is a beautiful story about a woman who cared for her 90-plus year old grandfather with Parkinson’s Disease and dementia.

Excerpt:

“Because grief, like death, doesn’t adhere to our constructs. The wished-for deaths of ailing loved ones doesn’t make them any less loved. It only means we hoped for an end to suffering, on both accounts. And deaths that are supposed to be small can sometimes feel big. … The funeral commemorated a life that spanned nearly a century, putting those four years into a birds-eye perspective. They were sometimes burdensome, yes, and sometimes beautiful, but only a small portion of a rich and varied life: of his and mine both.”

The full article is here:

www.nytimes.com/2019/10/11/well/family/little-wished-for-deaths.html

Little Wished-for Deaths
by Mary Pembleton
October 11, 2019
New York Times

Robin

“The Soul of Care: The Moral Education of a Husband and a Doctor” (book review)

This is a review of a new book “The Soul of Care: The Moral Education of a Husband and a Doctor” by Arthur Kleinman, MD, a psychiatrist and anthropologist at Harvard.  It is about the “stressful, harrowing, depressing, and rewarding” aspects of caregiving for a spouse with early-onset Alzheimer’s Disease.

Excerpt from this article:

In his new book, [the author] chronicles the harrowing decade he spent caring for his wife, Joan, after she was diagnosed with early-onset Alzheimer’s disease in her 50s.  He describes the process of navigating a health-care system that seemed to offer plenty of clinical care but little compassionate care as she declined from a lively, witty Sinologist to a woman unable to see, dress herself or recognize loved ones. In moving detail, Kleinman tells the story of a husband trying to honor, in the best way he could, his wife’s ultimate wish: “I will not die without dignity.”

You can read the full article here:

www.washingtonpost.com/health/caregiving-for-a-sick-loved-one-can-be-stressful-harrowing-depressing–and-rewarding/2019/09/27/dbb41cf4-c918-11e9-a4f3-c081a126de70_story.html

Health
Perspective
Caregiving for a sick loved one can be stressful, harrowing, depressing — and rewarding
By Dhruv Khullar
September 30, 2019 at 6:00 a.m. PDT
Washington Post

Robin

“Are you a healthy caregiver” – 10 question test

Here’s a 10-question test for caregivers to determine if they are
injuring their own health.

The authors say: “On average, it takes family caregivers four years
to reach out and ask for help. Don’t be part of those statistics. Ask
for the help you want and need. You will be a healthier caregiver and
the person receiving care will be better cared for.”

Robin

—————————————————————

www.familycaregiversbc.ca/caregiving-parents/are-you-a-healthy-caregiver/

Are you a healthy caregiver?
July 19, 2018
Family Caregivers of British Columbia

Many caregivers understand the importance of caring for themselves
and, yet, in another breath, say things like, “I feel overwhelmed,”
“I’m stressed out,” “I’m too busy to eat, let alone find time to stay
healthy,” and “There are so many things to do, how do I make time for
myself?”

Start by checking in with yourself. Respond to the statements below to
recognize the positive steps you are already taking to ensure you stay
healthy, and to identify areas where you might consider action to help
keep you resilient.

1. I am satisfied with my overall personal health.

Yes No

2. I have the skills and information I need to give the required care.

Yes No

3. I maintain regular contact with family and friends and make time
to spend with them.

Yes No

4. I can ask for help and accept help when it is offered. I know I
don’t have to, and can’t, do this alone.

Yes No

5. I can communicate effectively with the person I am caring for, as
well as with others involved in their care.

Yes No

6. I am aware of community resources available to help support me in
my caregiver role.

Yes No

7. I am aware of caregiver support groups (locally or online) and/or
have a supportive network where I can share my challenges and
successes.

Yes No

8. I make use of respite options available and take breaks away from
my caregiving responsibilities.

Yes No

9. I have gathered information about the progression of my care
recipient’s disease, so I know what to expect and can prepare in
advance as best I can.

Yes No

10. I know how to navigate the healthcare system and who to ask if,
and when, I need help.

Yes No

****************

Give yourself one point for every “Yes” answer.

8-10 Points
You are already taking several important actions to take care of
yourself and make sure caregiving is sustainable for you. Look closely
at any statements where you answered “No,” and consider whether
accessing more resources would be helpful for you.

5-7 Points
You understand the importance of self-care, but you’re not always able
to take action to support yourself. Consider any barriers you have to
self-care and ask yourself whether these are external (you don’t know
about the resources that exist to help you) or internal (you have
trouble asking for and receiving support). Sharing the care is
essential to finding enough time and energy for yourself. Choose one
statement where you responded “No” to work on this week.

Fewer than 5 Points
Without contributing to your own well-being, caregiving quickly
becomes overwhelming and unsustainable. Use this list of 10 statements
as a guide to creating a self-care plan; start with learning more
about the caregiver support resources available to guide you. It will
be important for you to identify resources you’re not currently using
in your social circle, such as family, friends, acquaintances and
neighbours, to share the care and create some much-needed space for
addressing your own well-being.

On average, it takes family caregivers four years to reach out and ask
for help. Don’t be part of those statistics. Ask for the help you want
and need. You will be a healthier caregiver and the person receiving
care will be better cared for.

 

“Aikido communication – Align, agree, redirect, and resolve” – notes

Caregiver Teleconnection, a service of WellMed Charitable Foundation,
hosts periodic conference calls on caregiving topics.  Last week, the
topic was “Aikido communication – Align, agree, redirect, and
resolve.”  The speaker was a gerontologist with the Texas Extension
Service, Andy Crocker.

With Aikido, one listens for areas of agreement or common ground and
uses “I” messages, which are particularly effective when emotions run
high.  With “I” messages, rather than “You” messages, caregivers can
de-escalate potentially confrontational situations between themselves
and family members or healthcare providers.  This approach is also
useful in de-escalating situations between caregivers and care
recipients, even if the care recipient has cognitive impairment.

The conference recording (audio only) is available here:

https://soundcloud.com/caregiverteleconnection/finding-common-ground-aikido-communication-with-andy-crocker-91018

Brain Support Network uber-volunteer Denise Dagan listened to the
conference call and shared her notes below.

To sign up for email announcements about these conference calls, check out:

http://caregiversos.org/caregiver-teleconnection/

Check out the many examples.  This approach is definitely worth trying.

Robin

————————————————————

Notes by Denise Dagan, Brain Support Network volunteer

Finding Common Ground: Aikido Communication
Speaker:  Andy Crocker, Gerontologist, University of Texas Extension Service

Caregiver Teleconnection
September 10, 2018

Communication is a process or cycle.  When I speak, you respond based
on your individual interpretation of what I said (based on your
experience).  Your sensory perception, health, patience, etc. impacts
your response to my comment(s).

The process begins with how I choose to phrase what I say.  “I”
messages increase the chances of being heard with a positive tone.
“You” messages are confrontational and may result in conflict.

Example:  Conversation between siblings (Andy and Katie) caring for their Mom.

Andy: “You need to help around the house.”  The tone is accusing Katie
of not doing enough around the house and may result in conflict.

Andy: “I need help around the house.”  The tone is stating his need
for help around the house and is not accusing or blaming.

Another example:

Andy: “You made me so angry!”  Blaming Katie for Andy’s anger.

Andy: “I feel angry that you…”  Blaming Betsy’s action for Andy’s
anger.  One level removed is less confrontational.

Sometimes, it is best to make an appointment to speak about something
and actually plan what you will say to get your message across with a
level head.
* Take out “You” messages in the plan for how to communicate your
message or your ask.
* Keep out irrelevant factors from your history together from the discussion.
* Never say, “You always…,” or “You never.…”
* Be sure to express your appreciation for assistance others provide
in your caregiving so they feel appreciated.

Aikido Communication

Tenets / 4 Steps:

Align – find the other person’s perspective.  See the situation from
in the other person’s shoes.
* How would I feel if I were in their shoes
* What does this person need form me?  Praise, appreciation, control?
– Ask: Give me an example of something I can do?  If I could do one
thing to help you, what would that be?
– Rather than saying, “What do you want from me?!” or “What am I
supposed to be doing?!”

Agree – identify issue and concerns with common ground (goals, needs,
feelings) to get on the same page
* I share your concern about…,  I agree we need to do something about…,

Redirect – move to productivity
We both want to do what’s best for…

Resolve –
I think we should explore…,  I think…would be helpful for…

Sometimes, you have to agree that there is no resolution or solution
to the problem at hand.  That, in itself, is progress.

Aikido can be used in communicating with a person who has cognitive
impairment or dementia, where higher order functioning is not present.

Example: Grandson caring for grandfather with dementia who was a
Marine Colonel.  Every morning he rises at 4am and get the day
started.  You can’t tell him he’s no longer a Marine and has no place
to go because being a Marine is his experience of the world.  You must
align, agree, redirect and resolve to understand his motivation for
what he’s doing.  To help him maintain his dignity, activity,
independence as much as possible without adding fuel to verbal or
physical conflict.

* Align – he believes he is a Marine so you must cooperate with what
you can do at home within his ‘world’.  You cannot keep him in bed
longer.

* Agree – you know he always started with shaving, dressing,
breakfast, exercise – all things you can assist him with that align
with his belief that he is a Marine and are things he can do
productively at home.

* Redirect – ask for his help around the house today and direct his
attention to KP duty / cleaning up breakfast. You know he always
shaved twice daily, so be sure to include that activity to the daily
schedule.

* Resolve – In dealing with someone who has dementia, resolution is
that grandpa sleeps through the night and accepting that he rises as
4am, obtaining grandpa’s cooperation, calm demeanor, emotional calm
throughout the day.  Recognizing that what works one day may not work
the next day – just give your initial inclination / plan a try and see
how effective it is.

Aikido Communication is one more tool in your toolbox to help get
through your day, along with:
* Mindfulness & relaxation techniques
* Respite resources
* Caregiving or Home maintenance assistance (volunteer friends/family
or hired help)

Question and Answer

Q. Aikido is like Naomi Feil Validation.

A. Both her method and Aikido have the same understanding of how to
understand and manage someone with dementia, but Validation is less
useful for direct communication.  We can be assertive without being
aggressive or confrontational.  Using the “I” messages to identify how
you feel and what you need and suggest what needs to be done without
the conversation devolving.  It is not easy because it does not come
naturally to us, but it is effective.

Q. I found I always did what my father told me, but now that he has
dementia I find I am the one who needs to tell him what to do and how
to do it to keep him healthy and safe.  There is a big disconnect when
your eyes see your father, but your mind tells you he is not the same
man he was.  The disconnect is painful and challenging.

A. Good future topics are role loss or role change.  There is a good
amount of loss and grief when the person you used to look to for
direction and advice is no longer available to you because of their
cognitive changes.  At the same time, you need to take charge and do
what’s necessary to look after him.

A. There are family members surrounding the primary caregiver and care
recipient who are all struggling with grief before the care
recipient’s death (anticipatory grief).  There is grief with the loss
of each of the care recipient’s abilities.  Often there is a family
member who doesn’t want to help or visit because they don’t want to
see the care recipient in ’that’ state.  That’s anticipatory grief.
Sometimes, it is helpful to identify it as grief in a conversation
with them to try to help them work through their grief and garner
their help in caring until the person actually does pass away.  They
may be adamant that they don’t want to see their family member in
’that’ state.  It is sad but you must respect that avoidance is their
way of dealing with their grief.

“3 Legal Documents Caregivers Need to Manage a Senior’s Healthcare”

This short article is about the three documents — HIPAA authorization, medical power-of-attorney, and advance health care directive — caregivers should make sure they have if they are managing the care of a senior.  Although this article is directly to adult children caregivers, this advice applies to all caregivers, even spouse caregivers.  We have met many spouse caregivers over the years who do not have these documents either.

See AgingCare for the article:

www.agingcare.com/Articles/legal-documents-to-make-healthcare-decisions-for-your-parent-146623.htm

3 Legal Documents Caregivers Need to Manage a Senior’s Healthcare
Marlo Sollitto
Updated May 3, 2018
AgingCare