This post by Denise Brown made me think about what caregiving for the caregiver might look like.

And I’m basing it on my own needs right now. I’m looking for someone who is part—

• Coach

• Therapist

• Journey Partner

• Listener

• Supporter

• Spiritual nurturer

• Truth teller

• Experienced advisor

Who provides me a place to safely—

• Be real (myself) to scream, yell, vent, be frustrated

• Be lost

• Be afraid

• Be sad

• Get a hug

• Gain respite

• Plan things

• Discover myself

• Give myself grace

Does anyone know of a person or place that provides such caregiving services for caregivers?

If there are such folks in the universe, I think they’re onto something. And if not, then there is a huge opportunity for somebody to capitalize on providing these services to the ~63 million caregivers 😉

Maybe a name like Reciprocal Caregiving…

Take care of yourself,

Bob.

Here’s a related article - Who Takes Care of the Caregiver.

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This is a part-2 of a series I’m sharing on the importance of planning in elder care.

I hope you come away with an appreciation for planning, as well as some other serious considerations.

Here, I want to begin with a post by Lindsay Friedman that supports the conversations you need to have as part of your elder care planning. She asserts that these are potentially more important than money, savings, or budget.

Here’s her post--

Reality

Let me wrap up my thoughts and reactions in this way—

Planning is crucial.

The conversations associated with planning are even more important.

These get you to a point where, if necessary, you can begin to execute your plans.

But there is a BIG BUT

If you don’t have the money. And, in the current LTC systems in the United States, that means LOTS of money; then those plans and conversations don’t matter.

The point I’m making is that LTC needs to be affordable for the masses, and right now, it’s not.

Don’t believe me; research LTC costs in your local area. Do the math and compare it to your retirement savings and LTC insurance (if you have any).

So, what’s your point, Bob?

We need to plan, have the conversations AND advocate for LTC and Medical cost containment. Otherwise, only the 1% can afford to age well.

Take care of yourself,

Bob.

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One of the things I’ve observed as people are aging is that the caregiving support industry seems to be growing.

Not necessarily the caregivers themselves, but the people who will—

• Sell you LTC insurance

• Help you to pull together your Elder Care plans

• Provide estate planning

• Provide elderly financial planning

• Advise you whether to age in home or go into Independent/Assisted/Memory/Nursing care path

For example, I’ve written about A Place for Mom here.

What prompted this post is Amy Friesen’s “Eldercare Shouldn’t Start with a Crisis.”

The whole point of Amy’s article is to have those planning discussions early. So that when a crisis hits, you’re ready for it. I couldn’t agree with her more. But I want to add my own nuance and experience to this important discussion.

I want to point out that planning is typically a static activity, much like estate planning. And once you’re ‘done’ with it, you put it on the shelf and get a sense of accomplishment and readiness.

My point is, you’ll never be ready for the crisis no matter how much planning you’ve done.

Why?

It’s an unexpected and unplannable…crisis!

So, in addition to planning, you need to hone your crisis-handling skills. Your emergent skills to navigate things quickly, decide on pros and cons, and quickly make the best decisions you can under the circumstances.

That consulting an LTC expert, having them provide advice and plan for you to simply…execute, is:

• Not good enough

• Risky

• Insufficient

Sure, it neatly ties things up in a bow, but it separates you from the details AND from the ability to think whilst changing your plan on the fly to meet shifting demands.

Let me share a story.

My Story

When my wife first got diagnosed with Atypical Parkinson’s and then later Lewy Body dementia, I sort of wigged out a bit.

I went down the path of estate and financial replanning with my attorney. As part of this, I also pulled together an Elder Care Plan with the attorney. I discovered this was a ‘thing’ in the community. People who could—

1. Assess your situation

2. Help you to define an aging strategy

3. Research pieces of it (and help you understand trade-offs), for example, costs of Independent and Assisted Living.

4. Pull together a Care Plan that identifies decision-making and strategy for our aging (document).

My first one cost me about $1,500-$2,000 and was part of my estate plan.

I also approached another advisor to gain some independent advice. That cost me about $1,000 over 4, 1-hour sessions.

So, all told, I spent $3,000 for a document that was and is sitting on my computer.

When she fell and needed major back surgery in late 2024, all bets were off with the plan.

Between then and now, as her PD and LBD have quickly advanced, all bets are off with the plan.

Ask me if the plan has been updated.

No.

Ask me if it’s still relevant.

Parts of it, but not much.

What’s changed?

Almost everything about our strategy. And things have oscillated quite a bit as I come to grips with the age-at-home vs. age-in-a-facility decision, based on my ability to care for my wife and the costs.

I consider the plan largely worthless and the money for it poorly spent.

Now, back to the point

But let’s get back to my point.

Back to the Eisenhower quote from the picture… Plans are largely worthless.

The act of planning is everything.

But it must be—

• Continuous planning

• Continuous research

• Continuous reevaluation and strategy development

• Continuous engagement

You must work on it in bits and pieces all the time. You’re never done with the planning and…the learning!

You can’t delegate this to someone else.

You must do it yourself.

Sure, you can involve advisors, consultants, and experts. But at the end of the day, you know your situation far better than all of them. And they won’t be helping you execute the plan. In that aspect, you are on your own 😉

Ultimately, all this continuous planning makes you better prepared to handle any crisis.

But I can hear you now…

BTW: This post is not a critique of Amy’s article. It’s a…Yes, and.

Take care of yourself,

Bob.

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The Caregivers Conscience

Wrote/shared this incredibly moving piece for me that can be summed up with “Sadly Not Anymore.” I connect with everything they share—

A CAREGIVER'S CONSCIENCE

SADLY, NOT ANYMORE

“Sadly, not anymore,” is a phrase that comes up more and more in my life as a Caregiver…

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7 months ago · 10 likes · 12 comments · The Caregiver

Kirbie Earley

Kirbie’s article titled What You’re Feeling is Valie, was just what I needed when I received the email. Her opening sentence — People who have not been caregivers will never understand what you’re feeling, and this is frustrating because when we’re feeling things that are uncomfortable or unfamiliar, we want to have them validated.” Give you a hint on the article’s journey…

The Dementia Chronicles

What You're Feeling is Valid

People who have not been caregivers will never understand what you’re feeling, and this is frustrating because when we’re feeling things that are uncomfortable or unfamiliar, we want to have them validated…

Read more

7 months ago · 18 likes · 11 comments · Kirbie Earley

Barry Jacobs

Shares his moving journey caring for his dying mother. A journey that required grace and balance.

https://www.aarp.org/caregiving/life-balance/caregiver-advice-nervous-breakdown/

I hope you found some insight, inspiration, and hope from the shares. Until next time,

I see you, Caregivers. Take good care,

Bob.

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Because of the nature of my childhood, I have a really hard time believing in myself, loving myself, trusting myself, and giving myself grace.

My parents were emotionally and physically abusive. As the oldest of five children, I received the most and worst of their attention. In a word it was traumatizing.

Growing up I felt Un—

• Unloved

• Unable

• Unworthy

• Unintelligent

• Unvaluable

• Uncapable

• Unpart of the family,

• Just UN.

When I left home and joined the Army at 18, I thought I’d left this largely behind me. What I’ve recently become aware of, as I move down my caregiving journey with my wife Diane, is that this is all still with me. Beneath the surface and impacting my day-to-day thoughts, reactions, perspectives, mindset, and life.

Now that I’m working with a therapist, I’m processing much of my childhood and facing, dealing, and reframing it.

I’m working hard on my self-reflection, self-love, self-respect and self-forgiveness.

You see, I’ve discovered that since my family was so, so hard on me, I’m just that hard on myself. I’ve always been that way. Feeling that I’m never good enough in any situation.

And it’s odd really, I can give all the above to others, but I have immense trouble giving it to myself.

In a word, I’ve felt that I must be perfect, and since I’m not, I basically suck. That is, until more recently.

I saw this post on LinkedIn that inspired this reflection and this post. It explores feelings on the part of Amal and George Clooney. Feelings of inadequacy and not being…enough. Feelings that they each never knew the other had. And I thought if they could have these feelings, then it normalized mine just a bit. I resonated with those closely held feelings.

As my wife succumbs to her Lewy Body Dementia, we’ve lost much of our ability to have the relationship and conversations that the Clooney’s are now having. So, I can’t really share with her my revelations and personal growth. That said, I can show her and continue to grow for me and for her.

The end of this post is really a declaration. One that every day, I will wake up and look in the mirror and declare that—

• I am worthy of love,

• I am good enough,

• I am capable enough,

• I am doing enough,

• And I love who I’m becoming…

If I have a regret, it’s that it took me so long to wake up and to See the Real Me.

Fingers crossed, I continue to look in the mirror and reflect every day as I care for myself and my wife…

Namaste

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My wife was diagnosed with Atypical Parkinson’s Disease about 4-5 years ago. As most caregivers will tell you, I saw symptoms much earlier, but I didn’t have a name for them, and we ignored them.

About a year and a half into her PD diagnosis, we determined that she also had Lewy Body Dementia. Again, I saw symptoms much earlier, but…

So, I’ve been a care partner for ~5 years now.

What I’ve discovered in my journey is that caring for my wife first is wrong. When I do that, I put myself second. And everyone else does too.

In that way, I find myself…

• Exhausted

• Lower priority

• Invisible

• Unkept

• Stressed

• Depressed

• Did I say, exhausted?

Using the phrasing – “the caregiver should also be caring for themselves” or “mind your self-care” does it a disservice. We should be saying things like—

• Care partner – Your Prime Directive is caring for yourself.

• Care partner – You must spend 50% of your time on yourself!

• Care partner – See your doctor and dentist, take care of your health.

• Care partner – I’ll give you two days of respite to do anything you wish.

• Care partner - I found a great therapist who specializes in caregiving support; here’s their number.

• Care partner – How are YOU doing? Before you go, see who they’re caring for.

• Care partner – Can I find you a good therapist or someone to talk to regularly?

• Care partner – You look like shit; go to my house and rest. I got this.

Typical afterthought self-care conversations do an injustice to their importance because they feel optional.

They’re not!

You First

Dolly Parton's recent passing stood out to us as an example of this inside-out, you-first posture.

In a quote from this Time article—

Wrapping Up

Care partners of the world.

The first person to care about is YOU. It’s an inside-out job.

If you’re not doing it, then do it. No excuses!

It’s not a nice-to-have. It’s a MUST-have.

Now, what are you going to do about it?

Take care of yourself,

Bob.

Additional Thoughts

An inspiration for me is this post—https://beingpatient.com/voices-caregiving-is-an-inside-job/

Another inspiration is this post titled— The Forgotten Sides of Maslow’s Hierarchy: The Caregiving Family

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I’m no expert on grief. In fact, I’m sure I’m not a normal griever; whatever that means.

For example, when my mom and my stepfather passed away, I felt very little. Sure, I was sad, but I was also confused about why I didn’t feel… more. I later suspected it was because of how challenging my childhood was and how I never really forgave them for the abuse. But that didn’t explain everything.

I contrast that against the grief I felt when our dog Foster passed away. I was grief-stricken for months afterward. To this day, the incongruity of these two reactions still sticks with me.

Now I’m navigating ambiguous grief as my wife’s Lewy Body Dementia advances. This is the Energizer Bunny of griefs in that it goes on and on daily.

So, grief is something that I’m dealing with daily and I thought I’d share this post on Grief by Melissa C Main—

Wrapping Up

One of the things that helps me navigate my grief and grieving is writing. It’s one reason I decided to share my caregiving journey on this blog.

I find it cathartic to reflect and write. It gets things “out there” for me.

I often share quite vulnerable things. You might wonder why. First, it helps me. But I think it also helps others who might be navigating the very same waters that I am.

No matter how you do it, try to find something that helps you navigate. A person, an activity, a book, your faith, something.

Another person I admire who shared her own journey of navigating both her parents’ dementia is Ti Mougne. She wrote the book Held in the Vanishing, which I’m reading as I write this. I find it a very vulnerable piece of work, and I can only read bits at a time.

Here’s an interview link -

https://www.linkedin.com/posts/timougne_an-interview-with-ti-mougne-atmosphere-activity-7496196275776724992-yHcO

If you’re a caregiver, you’re probably grieving.

Grieving for your care partner.

Grieving for what came before.

Grieving for what you’ve lost or what’s changed.

Just grieving.

I see you, and I grieve with you. I hope this post has helped…just a little.

Take care of yourself,

Bob.

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I like this quote from Rosalyn Carter—

And it reminds me that becoming—

• educated about

• an advocate for

• planning for

• supportive of

Caregiving is something that EVERYONE should be doing. Not just the caregivers.

This post is intended not for caregivers, but for those who know someone in their lives who is a caregiver. Often, it’s a family member who is going it alone.

And the question we should be asking ourselves is: what can we be doing to be more understanding and supportive of the caregiver?

Kirbie Early shared a pair of posts describing supportive archetypes for caregiving. First from a negative perspective and then from a positive.

I think it would be incredibly educational for everyone to review them.

Negative Caregiver Support archetypes –

The Dementia Chronicles

The Characters in a Caregiver's Life

When you became a caregiver, you probably focused on the person you’d be caring for. What you didn’t anticipate was the supporting cast that would come along with that role…

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3 months ago · 13 likes · 8 comments · Kirbie Earley

• The Check-Inner

• The Expert

• The Comparer

• The Disappearer

• The Drive-By Visitor

• The Unsolicited Advisor

• The Ostrich

• The Cheerleader

Positive Caregiver Support archetypes –

The Dementia Chronicles

The Good Characters in a Caregiver’s Life

Recently, we met a cast of characters that you probably know - The Checker-Inner, The Expert, and others. You can probably assign a face to each type without a lot of effort…

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2 months ago · 22 likes · 11 comments · Kirbie Earley

• The Real Asker

• The Listener

• The Validator

• The Stayer

• The Room Reader

• The Follow-Througher

• The Witness

• The Doer

I found that I’m guilty of operating under many of the negative modes. Sure, my heart was in the right place, but I was embarrassed to discover how unhelpful I was. Naming them has certainly made me aware of where I can improve.

And there’s a relationship between the two lists. For example, the Unsolicited Advisor can/should shift to the Follow-Througher mode. Adding execution to their advice.

Or the Stayer is the opposite of the Disappearer. It’s those folks who consistently stay with you as a caregiver, no matter what.

I suggest you use these to increase your awareness of your caregiver support patterns and lean more toward the positive side of the equation.

I’ve marveled at Kirbie’s writing before and how relevant and genuine it is. Thanks for shining a light here, Kirbie.

Take care of yourselves,

Bob.

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This is a Part-2 post. Since Part-1 was such a downer, I thought I’d offer some survival tips I’ve learned along the way…

What are ways I manage the weight?

In my last post, I expressed the weight I feel as a Caregiver or Care Partner. In this post, I’ll share some of the things I do to “manage” the weight

• Family – of course, our families have tried to chip in as much as they can. The key for me is to accept the help and ask them for help. Not always easy.

• Friends – We’ve found that caregiving has shown us our real friends. Some have quietly distanced themselves. And that’s ok. Others have stepped forward and been of immense help. One has been a godsend, and you (Cheryl) know who you are.

• My God / Source / The Universe – I find great solace in knowing that I am part of a great, loving, inclusive power. That I will live beyond this mortal life.

• Our Church – We belong to Cary Alliance Church, and I can’t tell you how supportive the pastor and members are to my wife and me. And not for a short time, but over the years. Grateful.

• Therapy – I’ve been going to therapy for almost two years. It’s been a godsend for me. Thank you, Makayla.

• Reframing – As part of my therapy work, I’ve been turned onto reframing as a practice. And boy do I practice 😉

• Rest – I’m starting to think that a 1–2-hour nap is a gift from God. Maybe that’s why I fell asleep in church today.

• Writing / Journaling – I find writing cathartic. And yes, there’s a lot going on in my life, so there’s a lot of writing 😉

• Grace – as in giving myself some. Almost every day I have a meltdown of some sort. Something that tries to drop me into guilt and shame. But grace is the answer.

• Reflective Learning – what is the weight trying to teach me? This is a reframing exercise. Looking at the good in the weight.

• In-home Caregiver – We’ve been lucky enough to afford and find a fantastic part-time caregiver for my wife. She comes 6 hours a day, five days a week. That provides a buffer so that I can continue working, writing, and, to be honest, surviving.

I hope some of these ideas might inspire something in your own weight management system 😉

Chip Conley - What if the weight is the point?

In a recent post, Chip explored the notion of weight from a different perspective. One more focused on positivity and growth. Here’s a snippet from the end of his post—

A really nice reframe!

Take care of yourselves,

Bob.

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Caregiving…

• has a physical weight,

• has an emotional weight,

• has a spiritual weight,

• has an intellectual weight,

• has a professional weight,

It has a weight

And the weight isn’t consistent.

• Sometimes it comes more at 2am,

• more in the middle of the day,

• more in the morning,

• more in a quiet moment of reflection,

• more when you’re exhausted,

• more when you least expect it.

But it’s always there

• Weighing you down

• Undermining your hope

• Diminishing your spirit

For all the caregivers or care partners reading this…

• I feel you

• I see you

• And I pray for you.

The next time you visit a caregiver, ask them about the nature of their weight.

Just listen.

And, if you see an opportunity, take an action to lessen their load

If only for a moment

Take care of yourselves,

Bob.

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Photo by Rusty Watson on Unsplash

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Jane Barratt shared a post titled Against Decline where she looks at aging decline with a refreshingly positive spin.

The Arc of Ageing

Against Decline

Let me start with a confession…

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5 months ago · 14 likes · 5 comments · Jane Barratt

Here’s a quote from the post—

It struck me hard that in this age of—

• Ageism

• Caring for elderly parents

• Sandwich generations

• Boomers

• Social Security and Medicare challenges

Many see the elderly as a net drag on all of us, our communities, healthcare systems, and the economy. And, yes, there are aspects of that. But there are also quite positive aspects of our aging populations that we often minimize or outright forget to mention—

• Wisdom

• Experience

• History

• Perspective

• Stories

• Learning

• Past and ongoing Contributions

As Jane points out, with age comes a different perspective that can be incredibly valuable for all of us to consider.

I think of our indigenous ancestors here in North America. They valued the elderly in their communities as role models, leaders, and containers for wisdom and learned perspective. As we’ve erased those cultures, I think we’ve forgotten very valuable insights and behaviors.

That is to embrace, value, and respect our elders. They bring a perspective that many of us have either never learned or too easily forgotten.

Let’s start recognizing and sharing a more positive narrative for all of our benefit.

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Barry Jacobs

A moving and honest, and vulnerable share about the ups and downs of his own 7-year caregiving journey with his Mom—

https://www.huffpost.com/entry/my-vexinggratifying-7-years-of-caregiving_b_591a5986e4b0f31b03fb9e8d

Diane Keaton

Who knew? This shares a heart-warming backstory about Diane Keaton’s caregiving journey—

https://www.linkedin.com/posts/neal-shah-careyaya_caregiving-caregiversupport-activity-7446342013727399936-Rgh0

Susanne Giannitti

Susanne is an OT and shares a powerful personal learning about “remembering”—

https://www.linkedin.com/posts/susanne-giannitti-6a2b2481_nearly-five-decades-into-this-profession-activity-7445819289162502144-w7Pq

I hope you found some insight, inspiration, and hope from the shares. Until next time,

I see you, Caregivers. Take good care,

Bob.

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Ruth Memeza

When Dementia Is Called Witchcraft: Lessons from Zimbabwe. Note: it is a HUMAN condition.

https://www.linkedin.com/posts/ru-ncube-a538532b0_when-dementia-is-called-witchcraft-lessons-share-7437126380561211392-tpQH

Amanda Smith

Dying Well Shouldn’t Be This Hard to Navigate

https://www.linkedin.com/posts/amandajanaysmith_longtermcare-hospicecare-endoflifecare-share-7435860427391135744-oFmb

Amy Shaw

Has shared an article titled—When Is It Time for Memory Care? Why Dementia Sometimes Breaks the Promises Families Make. It explores one of the hardest decisions for many caregivers…including me.

https://www.linkedin.com/pulse/when-time-memory-care-why-dementia-sometimes-breaks-make-shaw-pa-c-ppkyc/

I hope you found some insight, inspiration, and hope from the shares. Until next time,

I see you, Caregivers. Take good care,

Bob.

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Zara Bennett

A moving share about Parkinson’s Disease and it’s impact.

https://www.linkedin.com/posts/neal-shah-careyaya_very-moving-worth-the-watch-ugcPost-7435716050480095232-fxRP/

Susan Koen

Sharing about how love can strengthen in caregiving.

https://www.linkedin.com/posts/susan-koen_longtermlove-lgbtqlove-ftd-share-7435040446155759616-LZqJ

Cambria Jacobs

Powerfully translates the term “Caregiver” into “Steward” for her mom.

https://www.linkedin.com/posts/cambria-jacobs-0808695_im-not-my-moms-caregiver-im-her-steward-share-7437172186496471040-blFg

I hope you found some insight, inspiration, and hope from the shares. Until next time,

I see you, Caregivers. Take good care,

Bob.

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Here is a series of posts illustrating just how broken the elder care system is in the United States.

I share it not to freeze or demotivate you, but to inspire you to advocate for change.

You should be aware of this group (ROAR) and watch her video!

https://www.linkedin.com/posts/susiesingercarter_the-conversation-around-emma-heming-willis-ugcPost-7439734525414469633-ioGW

https://www.roar4ltc.org/

Too Quiet

https://www.linkedin.com/posts/kera-moseleynola_i-have-remained-quiet-perhaps-for-too-long-share-7431357379918770176-NVgu

Melissa Micholson

https://www.linkedin.com/posts/melissatnicholson_nationalcaregiversday-share-7430688845098266624-oRQW

YeeeeHaaaaa!!! Buckle Up Buckaroos!

https://www.linkedin.com/posts/justinshuman_the-boomer-healthcare-cost-tsunami-has-arrived-share-7430623926629847040-KJTC

LTC – Aha

https://www.linkedin.com/posts/becarewise_longevityeconomy-careinfrastructure-futureofwork-share-7431353980758306816-q5OY

Shadow Crisis

https://www.linkedin.com/feed/update/urn:li:activity:7430637164792569856/

Sandwich Generation

https://www.linkedin.com/pulse/i-living-sandwich-generation-before-had-name-kathy-heery-rn-ba-ms-3gihe/

Kathy Heery

https://www.linkedin.com/posts/kathy-heery-rn-ba-ms-b23786b_familycaregiving-healthcarereform-agingwithdignity-ugcPost-7431742456339181568-jS_Y

Childcare and Eldercare Are the Same Crisis –

Age Anywhere

Childcare and Eldercare Are the Same Crisis. America Hasn’t Solved Either.

In 1943, the United States government did something it has never done before or since. It built daycare centers. Federally funded, open to all families regardless of income, serving hot meals, staffed by trained educators. At its peak, 3,102 centers across 49 states cared for the children of women building ships and planes for a war. For 50 cents a day …

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8 months ago · 1 like · 2 comments · Elisa

Continuity Crisis

https://www.linkedin.com/posts/kimleehatton_aged-care-is-usually-framed-as-a-funding-ugcPost-7432562596500897792-S_d4

YES, AND...

No matter how well you plan or how much LTC you can afford, you’ll probably still be consumed by the BROKEN SYSTEM.

So, not only do we need to PLAN, but we need to ADVOCATE for repairs to the system. NOW!!!!!

https://www.linkedin.com/posts/douglas-dubitsky_a-difficult-truth-about-long-term-care-share-7437478254594179073-7ZQl

Nice post, but...It’s wrong. The system is broken, and planning for 96.5% of the population is NOT the answer!!!!!

https://www.linkedin.com/posts/lfriedman1_the-long-term-care-system-was-designed-around-share-7483219901369946113-krqC/

The only remaining question is—Are you going to do anything about it?

Take care of yourselves,

Bob.

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As my wife and I grew older together, it became clear that she was the strong one.

• She was in better physical shape than I was.

• She was healthier than I was.

• She had more energy than I did.

• She had a stronger social system than I did.

• She was more extroverted than I was.

• She was just more…

Sure, there were areas in our household that I maintained, like the accounting and breadwinning. But at the end of the day, I was probably going to need her help and support sooner than she would need mine. Call it caregiving, if you will.

Of particular concern for me were my 2018 TIA event, hypertension, and my Type 2 Diabetes.

But then…

Diane was diagnosed with Atypical Parkinsonism.

Diane was diagnosed with Lewy Body Dementia.

Her diseases progressed quickly.

And suddenly, seemingly overnight, I became the strong one.

I wasn’t ready.

I’m not so strong. Certainly not strong enough to take care of everything.

And who will now be strong for me when I need it?

It’s not fair.

It’s hard and getting harder.

Am I strong enough? I don’t know.

How I wish for the return of my strong one…

Take care of yourself,

Bob.

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This post by Carer Mentor made me realize that there are many caregiving or care partner relationships.

• Parent to Child

• Child to Parent

• Relative to Relative (my situation with my Mother-in-law)

• Child to Grandparent

• Spouse or Significant Other to Spouse (my situation)

These come to mind as common relationships. But I realized that each one of them brought unique challenges for the care partner.

That is in addition to the common challenges faced by all care partners.

Here are a few snippets from the post—

Allie received some pushback from a reader and re-clarified her point with this—

The pushback centered on making it sound as though spousal caregiving was harder than other forms of caregiving. And Allie clarified that this wasn’t her intent.

My Reason

My reason for writing this is to amplify what Allie shared in her post.

Why? Because I share the same isolation.

The loss of your loved one, your partner, and your closest confidante.

The loss of your sounding board, your biggest supporter, and your friend.

The loss of your caregiver if you need it, your vacation-mate, and your soul mate.

Is incredibly hard.

I too feel like I’ve gone into a very dark place, quite alone.

And I don’t see my way clear to find a “replacement” for all the characteristics I mention above. So, what do I do?

For me, I trudge on. Caring for my wife who has changed so fundamentally.

Knowing that only a care partner in my situation will ever come close to understanding what I’m missing and going through.

Essentially, I am comfortless.

No, I’m not saying that this form of caregiving is harder than others. But what I am saying is that the loneliness of it and the associated loss, depending on the disease and symptoms, can be devastating.

Allie, I see you, and I feel you!

Take care of yourselves,

Bob.

More

This post by Allie Varge titled The Geography of a Solo Anniversary complements this one nicely, so I thought I would share it.

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Kirbie Earley wrote a recent Dementia Chronicles post titled People Don’t Want to Hear It – Or Do They?” In it, she explored the notion that people really don’t want to hear about your challenges as a caregiver.

Here’s a snippet—

The article resonated with me deeply.

It made me think of topics that people avoid on both sides like—

• Challenges of caregiving and work-life balance

• Caregiver difficulty and challenges

• Chronic disease dynamics

• Death, dying, and hospice

• Estate planning, wills, etc.

• Advanced Directives

• Asking for help…

Almost anything related to the end of our journey. But avoiding these discussions does nothing but avoid the reality of the situation.

I like Kirby’s suggestion of somehow finding middle ground so we can grow our skills in having these challenging yet necessary discussions. And being REAL and being SEEN in the process.

In other words…

Take care of yourselves,

Bob.

Extra: I think this article is helpful not only for discussing death but also for discussing any extremely uncomfortable topics.

12 Reasons Why We Don’t Like To Talk About Death (and what to do about it)

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This post is inspired by this Kathy Heery article.

It was weird.

My wife had fallen and had a compression fracture in her back that needed surgical repair.

She was in the hospital for 5 days (over Christmas) post-surgery. On the day before her scheduled discharge, she fell in her room. They rushed to do another round of scans and reported that the 7-vertebra fusion was undamaged.

However, the fall evidently didn’t change her discharge plan.

Weird, right?

They were going to send her home with me. She had a catheter, couldn’t walk, and was in a lot of back pain.

I had to loudly, firmly, and repeatedly say that I couldn’t take care of her at home and asked their discharge coordinator to find a rehab facility for her.

Weird, right?

I also wonder what would have happened if I hadn’t asked for help. Would they have simply washed their hands and sent her “home” with me? I suspect, yes!

Rehab

Once she landed in rehab, which was essentially a nursing home, they began to move her through PT. Not as much as I’d hoped, but she did seem to progress to the point of being able to move on to somewhere with lighter assistance than full-time nursing support.

We had limited time in rehab, which was primarily supported by the insurance we had (Medicare) and again there was this real-time push to move her onto somewhere else.

She was in rehab for over two weeks and was then discharged to an Assisted Living facility. But that’s another story you can find here.

The Point

The point of this post is to share what I learned from this experience.

1. Hospitals seem to want to discharge folks as soon as possible. I would argue that, in our case and potentially in many others, it is far too soon. They want to send them home and let the family worry about the go-forward needs.

2. There is a role in the hospital typically called a Discharge Coordinator. They are often a social worker. My experience is that they take the path of least resistance, meaning they send them home unless somebody says something. You must advocate strongly for them to do something more sensible.

3. When your care partner and/or loved one is in any facility, nothing happens without an “order.” An order for pain medication, an order for more or different PT, an order for a wheelchair, an order for…anything. You must get accustomed to using this language and activity to advocate for your partner and get those orders flowing.

4. You would think that recovery would be the primary factor in deciding whether someone should leave rehab. While it’s a factor, it’s not the priority. Your insurance is. And again, there is an overarching push to get them out of there and home.

5. During my wife’s surgery, they used a catheter. Sometime after surgery, they said her bladder had “fallen asleep,” and the catheter couldn’t be removed. So, we needed catheter “management” on an ongoing basis. Something that required a bit of medical training and special device support. This level of medical support threw a wrench into any at-home support we could get (LPN- or RN-level nursing skills). As an aside, her bladder began to function properly after about 2 ½ months.

My Advice

If you’re in a situation where someone is about to be discharged from a hospital or nursing/rehab facility and you know that either—

1. You can’t take care of them at home

2. They can’t take care of themselves at home

For whatever reason, you have to put a stop to the discharge. Ask to speak with a social worker about your situation and demand appropriate support to make the discharge SAFE for your care partner or loved one.

The facility has liability and shared responsibility until you walk out the door. So, don’t do that prematurely.

Take care of yourself,

Bob.

Additional Info

Here’s a link to a product/tool by Doug Kaufman that helps turn discharge paperwork into clear next steps. It’s called - Next Care Steps.

Here’s an article by T.K.M. titled The Discharge Gap that you’ll want to read.

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I saw this LinkedIn post the other day detailing how a caregiver should handle a fall in a facility—

What would you do if you found a resident on the floor?
In caregiving, falls can happen at any time. One important thing I have learned is the difference between a witnessed fall and an unwitnessed fall.
✔️ Witnessed fall:
You saw the resident fall happen.
✔️ Unwitnessed fall:
You found the resident on the floor during checks, but you did not see how it happened.
One of the biggest mistakes caregivers can make is trying to lift a resident alone immediately after a fall.
⚠️ DO NOT pick them up on your own.
The resident may have injuries you cannot see.
Instead:
• Stay calm
• Check if they are conscious
• Assess the environment for hazards
• Call for help immediately
• Reassure the resident
• Wait for proper assessment
• Report and document accurately
Safety, teamwork, dignity, and professionalism are very important in healthcare.
Every day in caregiving is an opportunity to protect, support, and care for others with compassion. ❤️

My wife was in an Assisted Living facility. She was living with PD and LBD. One evening, I received a call that she was having a panic attack and was struggling to settle down. The CNA on the phone told me that there were no medical orders for panic medications, and her only recourse was to call 911 and send Diane to the Emergency Room for assistance.

Having recently been to the ER several times, I realized this would mean—

• A 2-3 hour wait to be entered into the flow

• A lack of PD awareness by staff

• A potential gap in her medication schedule

• Sitting around in rooms or hallways waiting to be seen and diagnosed

• An overall timeframe of 6+ hours.

I told the CNA to wait, and I rushed over to the facility. I took a little time, but Diane quickly settled down, and everything was fine. It took me about 45 minutes overall and no drugs.

BTW: There was no Doctor, RN, or LPN available at the facility. It was up to the CNA to make the healthcare decisions, and they followed a very distinct protocol.

The Point

I want to use the LinkedIn post as a backdrop for my revelation that AL facilities don’t really handle medical incidents.

Instead, they call emergency services.

Did you know that? I didn’t.

Now, I can see that for some things. But I can’t see it for all falls, panic attacks, or other relatively simple medical situations.

You might ask, “Why is that, Bob?”

What I’ve learned is that most, if not all, Assisted Living and Memory Care facilities are NOT equipped to handle even the simplest medical care situations. And their default reaction seems to be in two directions—

1. Call 911

2. Ignore the event and move on

In fact, they are NOT medical facilities. Please hear that. And don’t think that their handling of medication management changes anything.

They are primarily residential rental, meal, and light-assistance facilities.

That’s it!

So, please keep that in mind when making care decisions for your care partners and loved ones.

Take care of yourself,

Bob.

Here’s another post by Wendy Kirouac about her mom falling.

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