Respite, Memory Care, and Learning As We Went

There came a point in caregiving when I finally had to admit something I had avoided for far too long:

I needed a break.

Grandpa did not qualify for Medicaid yet, and he did not have long-term-care insurance. Most of the help we needed had to come from his income, family support, or community resources.

That was how I learned about the Colorado Respite Coalition, a program of Easterseals Colorado.

At the time, I applied for its respite voucher program and received help that allowed Grandpa to stay in a facility for a full week.

A full week.

Seven days where I did not have to listen for doors opening.

Seven days where I did not have to wonder whether he was awake, wandering, hungry, confused, or trying to “go home.”

Seven days where someone else carried the responsibility.

And I wish I could tell you I spent the entire week at a spa, sleeping until noon and rediscovering myself.

Nope.

I think my nervous system spent the first few days suspiciously waiting for someone to need me.

But it was a beginning.

I was starting to understand that respite was not abandoning Grandpa.

It was part of keeping both of us going.

Then we tried care at home

Several months later, we began paying privately for non-skilled home care out of Grandpa’s monthly income.

We purchased services à la carte.

A few hours here.

Some assistance there.

It helped, but it became expensive quickly.

And Grandpa was bored.

He had always been active. He needed movement, conversation, games, exercise and something meaningful to do.

But dementia complicated that too.

He preferred interacting with people he recognized.

You could send the nicest caregiver in Colorado into the house with games, activities and the best intentions, and Grandpa might still be thinking:

Who are you, and why are you in my house?

Familiarity mattered.

Eventually, we had to acknowledge that home was becoming harder to sustain.

Then came memory care

We found a beautiful memory care community.

And I want to be very fair about this part.

They took wonderful care of Grandpa.

He received excellent care there.

At the time, he was private pay, and we used his available resources to cover his care.

What I did not understand yet was one very important question:

What happens when the private-pay money runs out?

Nobody had taught me to ask that.

We eventually worked with Beneficent, who helped us understand when to begin applying for Long-Term Care Medicaid and how to prepare for that transition.

That guidance mattered.

Because applying for Long-Term Care Medicaid is not simply waiting until there is no money left and then submitting a form.

There are assets.

Income.

Documentation.

Eligibility requirements.

Timelines.

Requests for additional information.

And a whole lot of waiting.

For us, the Medicaid approval process took around 90 days.

That was when we also learned something I had not understood when we originally chose Grandpa’s memory care community.

It was a private-pay community.

Once his resources were spent down and he became eligible for Long-Term Care Medicaid, he could not simply stay there and have Medicaid take over.

He needed another placement.

That created one of those caregiving moments where everything happens at exactly the wrong time:

Less money.Less time.More care needs.And not enough knowledge.

Some facilities may allow someone to enter as private pay, spend down their resources, and then transition to Long-Term Care Medicaid. Others do not. Policies vary, so this is something families should ask directly before placement.

I did not know that.

This is where senior living placement advisors can help

Services such as A Place for Mom and CarePatrol are senior living placement and advisory services.

They can help families identify and compare options such as assisted living, memory care, skilled nursing and other levels of care based on the person’s needs, finances, location and available services.

What I wish someone had prompted me to ask was:

Does this community accept Long-Term Care Medicaid?

If my loved one enters as private pay, can they remain after spending down?

Does the facility require a period of private pay before Medicaid begins?

What happens when care needs increase?

Will another move be required?

Those are questions I learned after they became urgent.

And strangely enough, even knowing what I know now, I am not sure I would have changed our first choice.

Grandpa was receiving wonderful care.

Sometimes you make the best decision you can for the person standing in front of you today, even knowing tomorrow may require another plan.

Eventually, another move became necessary

We searched for a facility that could meet Grandpa’s increasing needs and work with the Long-Term Care Medicaid transition.

Eventually, we found a privately owned nursing home.

That became his final home.

And this is the part of his story that remains very difficult for me.

I developed serious concerns about the care he received there.

I did not witness anyone physically harm Grandpa.

What I did observe were significant unexplained marks and welts on his bottom.

The appearance of those marks frightened me deeply.

I did not know exactly what caused them, and I did not want to make assumptions about something I could not prove.

But I knew what I was seeing was concerning enough that I needed to ask questions and make a formal report.

So I did.

I cannot tell you with certainty everything that contributed to Grandpa’s decline.

COVID changed long-term care dramatically.

Family access changed.

Visitation changed.

Our ability to observe his care as closely as we once had changed.

I can only speak honestly about what I observed, what concerned me and what I did in response.

I personally believe the experiences during that period may have contributed to his decline.

That belief has stayed with me.

But this experience also taught me something I want every caregiver to understand:

Advocacy Does Not Stop at the Facility Door

If something does not make sense, ask.

If you notice an unexplained injury, document it.

If your loved one suddenly seems afraid, unusually withdrawn, poorly cared for, dehydrated, unclean or dramatically different, do not convince yourself that you are “being difficult.”

Speak up.

And if you believe someone may be in immediate danger:

Call 911 first.

El Paso County Adult Protective Services also directs people to call law enforcement at 911 for emergencies or urgent situations.

For concerns involving someone living in a nursing home or assisted-living community, families can also contact the Long-Term Care Ombudsman. Ombudsmen advocate for residents, help resolve complaints and educate families about residents’ rights.

Long-Term Care Ombudsman – El Paso, Park & Teller Counties719-301-6388

Pikes Peak Area Council of Governments719-471-708015 S. 7th StreetColorado Springs, CO 80905www.ppacg.org 

Pikes Peak Area Agency on Aging719-471-209614 S. Chestnut StreetColorado Springs, CO 80905

You can also make a report to El Paso County Adult Protective Services.

Adult Protective Services719-444-5755Monday-Friday, 8:00 AM-5:00 PM, excluding holidaysAdultReportingAPS@elpasoco.com 

And do not forget the medical team.

Call the doctor’s office.

Tell the provider.

Tell the social worker.

Tell the nurse.

Tell the case manager.

Ask for your concerns to be documented.

Ask what should happen next.

You do not have to personally prove that abuse or neglect occurred before you are allowed to report a concern.

There is a difference between saying:

“I know someone hurt him.”

and saying:

“I observed something that concerns me, I do not know what caused it, and I believe someone qualified needs to investigate.”

That distinction matters.

The part nobody taught me

I was a social worker.

A care manager.

A therapist.

I had worked inside medical systems.

And still, nobody had taught me how to personally navigate all of this.

They do not teach you in social work school how to choose a memory care community that will still work when the money runs out.

They do not hand you a flowchart explaining when to apply for Long-Term Care Medicaid.

Nobody sits you down in the medical system and says:

“By the way, ask whether this beautiful facility will still accept your loved one if they eventually need Medicaid.”

Nobody explains how respite, private-pay home care, memory care, Medicaid spend-down, skilled nursing, placement advisors, Ombudsmen, Adult Protective Services and caregiver burnout can eventually become pieces of the same family story.

I learned these things the way so many caregivers do.

One phone call.

One mistake.

One resource.

One expensive lesson.

One crisis.

And one exhausted search at a time.

Giving myself grace for not already knowing all of it was very hard for me.

My professional background made me believe I should know.

But being a professional and being the granddaughter responsible for someone you love are entirely different classrooms.

Sometimes professional knowledge helped tremendously.

Sometimes it did not prepare me at all.

And eventually I had to learn something I wish I had understood much earlier:

Not knowing what you have never been taught is not failure.

Asking for help is not failure either.

Sometimes the most responsible caregiving sentence you can say is:

“I don't know what comes next. Who can help me understand my options?”

Resources We Used or Learned About

Colorado Respite Coalition / Easterseals ColoradoCRCinfo@eastersealscolorado.orgColoradoRespiteCoalition.org

BeneficentColorado Long-Term Care Medicaid planning and application assistance.

CarePatrol – Colorado Springs/Pueblo719-257-3001CarePatrol.com

A Place for Mom800-769-0509APlaceForMom.com

Grandpa's caregiving journey eventually ended during one of the most difficult periods our family had ever experienced.

I still miss him.

I still replay decisions.

I still wonder whether I could have done certain things differently.

But I also understand something now that I could not understand then:

I was learning while I was loving him.

And sometimes that was the very best I could do.