“Caregiving 101: Boldly Surviving” — top tips for caregivers

Caregiving.com recently hosted the 2017 National Caregiving Conference (caregiving.com/ncc17) in Chicago. Brain Support Network volunteer Denise Dagan attended many conference sessions via webcast. One session in particular caught my eye — “Caregiving 101: Boldly Surviving.” In this session three speakers each had ten minutes to share their top tips for new caregivers.

Lisa Riggi summarized the first two chapters of her favorite caregiving book “The Caregiving Years: Six Stages to a Meaningful Journey,” by Denise Brown. (Ms. Brown is the founder of Caregiving.com so this seemed a bit over-the-top.)

Carolyn Grant said she failed “as a successful family caregiver” because:
* I put myself last while looking after everyone else.
* I didn’t seek a caregiver support group.
* I didn’t let others help.
* I lost my self-identity and rarely did anything for myself.
* I stuffed my emotions to maintain strength, manage and cope.

Andrew Koch shared three foundational skills for dealing with someone with physical and/or cognitive impairments:
1. The Stop Technique
2. Visual, Verbal, Touch approach
3. Hand-over-hand technique

Denise’s full notes are copied below along with a few of her own comments in brackets.

One of Denise’s comments is this tip about asking for help: “Keep a list on your fridge of things you would appreciate a hand with. Sort it by how long the task(s) take. When someone offers to help, hand them the list and ask them to choose what they have the time and energy for.”

Robin

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Session Notes by Denise Dagan, BSN Volunteer

Caregiving 101: Boldly Surviving
2017 National Caregiving Conference

LISA RIGGI

Lisa Riggi was born into a caregiving family. For her, hands-on caregiving began at the age of 12.
#youngcaregiver is getting more and more attention.

“The Caregiving Years: Six Stages to a Meaningful Journey,” by Denise M. Brown, Founder of Caregiving.com and this conference host. Each stage has:
* A Title
* A Keyword (what to focus on, primarily)
* Stumbles (things that may trip you up), and
* Steadies (actions to help you through that stage).

Lisa’s talk will focus on the first two stages, as this conference session is titled “Caregiving 101.”

Stage #1
Title: The Expectant Caregiver
Someone you love is beginning to have health problems. Perhaps they don’t understand these new health issues and you are helping, or you are very close and have always been around for new babies and broken bones.

Keyword: “Ask”
Ask questions of: your caree, doctors, financial planners, lawyers, family members, etc.

Stumbles:
Assuming the needs of your caree
Not asking the right questions
Push back from caree/famly members
Denial of caree’s symptoms

Steadies:
Ask more questions
Journal and document everything
Involve a neutral party to assist

Stage #2
Title: Freshman
It’s hard to know when this stage begins, but it is more involvement than just asking questions. You are stepping in to make sure things get done, or arranging for services (housekeeping, meal delivery, online bill pay, yard service, etc.) to help.

Keyword “Find”
Services that help (housekeeping, meal delivery, online bill pay, yard service, etc.)
System that keeps you organized (binder, health management apps, calendar, etc.)
Support that comforts (support groups for both patient and caregiver, clergy, friends & family)
Ways to continue to enjoy your hobbies & interests

Stumble:
Assume the needs of the caree (remember “ask?”)
Understanding health care system (know what insurance the caree has and what it pays for, learn what specialists and therapists treat the diagnosis you are dealing with)
Push back from caree/family members
Denial of caree’s symptoms

Steadies:
Release from failing (I think she means don’t expect yourself to be perfect. Cut yourself some slack.)
Keep asking and journaling
Learn as much about caree’s illness as you can (from trustworthy websites, books, attend/watch lectures/webinars/seminars/conferences, support groups, etc.)
Get a second opinion

Next Stages of the book are these. I’m afraid you’ll have to find the book to read about them.
3. Title: Entrenched
4. Title: Pragmatic
5. Title: Transitioning
6. Title: Godspeed

CAROLYN GRANT

Carolyn Grant gradually slipped into caregiving as both her parents gradually had more needs. Her Dad had COPD.
Her Mom had lung cancer.

Caregiving is scary, but you will get through it. She knows because you are here, reaching out for information and support. In life before caregiving you had skills that you are using now, in your caregiving.

The upside of being a family caregiver is an enhanced and purposeful life, beyond the superficial.

Carolyn feels she “failed myself as a successful family caregiver,” because:
She put herself last while looking after everyone else.
She didn’t seek a caregiver support group.
She didn’t let others help.
She lost her self identity and rarely did anything for herself.
She stuffed her emotions to maintain her strength, manage and cope.

[Think about it. If this is what you are doing, too, you are probably damaging your own health. The remainder of Carolyn’s talk is about how she hopes you will approach caregiving to not fail yourself.]

Challenges for your caregiving journey:
1. Congratulate yourself for being a caregiver.

2. Minimize your guilt. Don’t shame yourself for taking care of yourself, too.

3. Figure out what you need and ask for help from family, friends, church community – anyone you can think of who may be willing to contribute a bit of their time.

[Best tip I ever heard for this: Keep a list on your fridge of things you would appreciate a hand with. Sort it by how long the task(s) take. When someone offers to help, hand them the list and ask them to choose what they have the time and energy for.]

4. Don’t lose yourself while you’re caregiving.
– Don’t bury your emotions. Identify & acknowledge them.
– Journal online or write down your feelings, frustrations – the good and the bad.
– Continue activities you did before caregiving.
– Make time for genuine friends, they will help you laugh.
– Have as much laughter and fun with your loved one as you can. Create good memories.
– Plan your life after caregiving ends. [Wow! that’s huge!!! I bet you never thought to do that.]

5. Talk to other family caregivers and help other family caregivers.
[It’s easy to find other family caregivers through support groups, your church, even Nextdoor.com.]

6.. Practice self-care
– Be kind to yourself with your thoughts. Have positive self thoughts.
– Rely on your faith. Reach out to your religious community.
– Eat well and exercise to maintain your immune system. [And sleep!]
– Laugh.
– Forgive yourself for your mistakes. Forgive others for not helping more.
– Welcome genuinely supportive people into your life.

Don’t focus so long and hard on the doors that closed that we don’t look up and see the doors that have opened.

ANDREW KOCH

Andrew Koch has three foundational skills to share.
1. STOP Technique:
Stop (or pause)
Take a breath
Observe what’s going on (within yourself, with your care receiver)
Proceed slowly, gently and with purpose.

2. Visual, Verbal, Touch
I see you.
I communicate/connect with you. Never assume you can use nicknames or pronouns (transgender, etc.)
May I touch you? (handshake, etc.) Never assume touch is okay.

3. Hand over Hand
Hold an object with someone for shaving, hair brushing, art, etc. This allows them to be more involved in life.
Sometimes, a previously inactive person will continue the activity after you remove your hand.

The purpose of these foundational skills is to:
Build Boundaries (Is it ok to use a nickname or touch someone?)
Respect Culture (including transgender)
Trauma Sensitivity (You don’t want to trigger a negative response in someone with a traumatic history.)
Reality Validation (understanding how the impaired person interacts in the world)
Maintain Presence (Don’t talk about anyone in the 3rd person. Be inclusive.)

QUESTION AND ANSWER

Q. How do you get someone who doesn’t want to be touched to accept hand-over-hand?
A. If you insist, they might resist. So, don’t insist. Instead, respect their boundaries by approaching them on their level. Verbally or visually demonstrate your respect for their boundaries. Ask questions before taking action (touching them) to build trust.

Q. One word that stuck with you after caregiving.
A. Carolyn said “Humility.”

Lisa agreed caregiving is a humbling experience, but she chose “Beautiful,” because of her Dad’s peaceful end-of-life experience.

Andrew said “Relationship.” Because caregiving is all about relationships, between caregiver/caree, between the family and the healthcare system, etc.