Monday, September 7, 2026

Blog 4: Managing the Daily Chaos: Routines, Resources, and Realities



“There is no such thing as a typical day. Only rhythms we fight to keep.”

When you’re caring for someone with Huntington’s Disease, no two days look the same—but every day is full.

Full of responsibilities. Full of adjustments. Full of emotional weight.
And—if you’re lucky—full of tiny wins that make the hard moments worth it.

People often ask, “How do you do it all?”
The honest answer is: I don’t. Not every day. But I do enough. And I’ve learned what makes our world manageable.

1. Routines Are Everything—But They Must Bend

We live by a loose daily rhythm. It keeps both of us grounded.

Mornings:

  • Medications come first. A daily pill organizer is essential. We use a device called Hero that we can set a scheduled dispense time and it automatically dispenses her medicine. Using sounds, lights, and phone notifications. Also it. An handle as needed dispensing. It has been a game changer for us.

  • I help her with basic grooming—sometimes just brushing teeth and hair is enough to start the day with dignity.

  • Breakfast is easy: something nutritious but not messy, with a calm environment (no TV, minimal distractions).

Afternoons:

  • Adult day care has been a godsend. Three days a week, she attends a local center thanks to a grant. It provides stimulation, social interaction, and gives me time to work and breathe.

  • If she’s home, I plan light activities: folding towels, watching her favorite show on Hallmark or just sitting on the porch.Our son is a huge blessing in working with her and recognizing signs of disregulation.

Evenings:

  • We try to wind down early. Dinner by 6:30, a calm routine, and low lighting help her settle.

  • Meals, believe it or not, is her anchor point throughout the day. Its almost how she measures time.

  • By 7:30 she is preparing for bed clad in her pajamas and waiting for her evening medicine.

But we stay flexible. Some days, routines fall apart. There are nights when she gets up at 2:30 a.m. and starts trying to do house chores (dishes, laundry, etc - which we have ti go back over to finish) or watching TV again, or begins waking everyone up asking questions about the upcomming day or events. Those are rough nights in trying to get her resettled so we can go back to resting. There have been times I have found the refigerator door has been left open all night, or the door to house becyase she likes to sit on the patio.
And that’s okay.

2. Technology Is a Silent Teammate

There are tools that make a real difference:

  • Pill Reminders: We use a talking medication reminder app synced with my phone and watch.

  • Smart Home Devices: We use Skylight calendar for Calendar Sharing: I use Google Calendar to track her appointments and adult day care schedule, color-coded and synced across my devices. And keep track of meals and grocery items as well as tasks and chores.

  • Video Monitoring: Just a small indoor camera in our main areas of the house helps me keep an eye on her if I’m outside for a few minutes or away at work.

I don’t rely on tech to do everything—but it reduces stress and helps me catch things before they become emergencies.

3. You Must Build a Support System (Even If You’re Independent)

I used to believe I could do it all myself. But Huntington’s humbled me.

Here’s what we now lean on:

  • Adult Day Programs: Our local one offers 3 days/week for just $10 total (thanks to a grant that lastet through Sept 2025). Now we have to pay however, again, thanks to Life Insurance or Long-term Care Insurance this helps to cover the costs.

  • Meal Delivery for Caregivers: Some counties offer meals through Aging Services programs. I also use meal services like Hungry Root.

  • Respite Services: Occasionally I use trusted friends and family to provide breaks for myself. I find I use the majority of that time sleeping or resting unless there is a special project to be done.

  • Spiritual Support: Church members help to provide her with activity and care and we are so thankful for their willingness to provide transportation for her while giving myself a brief respite and her with activity and social support.

You don’t have to have dozens of people in your circle—just a few who really show up.

4. Little Systems Keep Big Chaos Away

Here are a few “hacks” we’ve learned:

  • Label drawers and rooms to help her remember where things go.

  • Shower chair + handheld sprayer = dignity and safety.

  • Velcro shoes and tagless clothing = fewer meltdowns, no buttons or zippers. Athletic bras.

  • Weighted blanket at night helps reduce anxiety and restlessness.

You don’t have to renovate your home—you just have to rethink your space.

5. Track Changes Without Obsessing

I keep a simple weekly log in a notebook:

  • Was she more anxious this week?

  • Did she eat well?

  • Did she have falls, outbursts, or confusion spikes?

  • Did she laugh?

It helps me spot patterns before they become crises.
But I also let go of perfection. I don’t measure every moment. I measure progress in compassion.

6. Give Yourself Grace (and Margin)

Every day, I try to:

  • Sit down for one real meal.

  • Text a friend who checks in on me.

  • Pray or reflect in silence for 5 minutes.

  • Step outside—even if just to take out the trash.

These aren’t luxuries—they’re survival strategies.
Caregiver burnout is real. You can’t wait for someone to tell you to rest.
You have to build it into the day like a prescription.

Scripture That Grounds Me

“Come to Me, all you who are weary and burdened, and I will give you rest.” — Matthew 11:28

Sometimes, that “rest” isn’t a nap. It’s a sense of being seen.
Being held. Being carried by a strength greater than your own.

Final Thoughts

Managing the daily chaos of caregiving isn’t about perfection—it’s about rhythm, grace, and adaptability.
It’s about fighting to preserve normalcy in the midst of disorder.
And most of all, it’s about showing up again tomorrow, knowing that love lives in the routines.

Quick Resources:

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Thursday, September 4, 2025

Blog 3: Love in the Time of Huntington’s: Marriage, Intimacy & Loss - Ready

 

“For better or worse, in sickness and in health…”

We said those vows with stars in our eyes, dreaming of growing old together—hand in hand on the porch, raising a family, exploring the world.
We never imagined that “sickness” would come so soon, or that “worse” would stretch for years.  Or that one us of won't be able to live long enough to grow old together.

When Huntington’s Disease entered our marriage, it didn’t knock gently.
It barged in and rearranged everything.

But here's what no one tells you:
Love doesn’t disappear—it just learns a new language.

1. Redefining Intimacy

In the early years, we held hands, danced in the kitchen, exchanged long conversations, and finished each other’s sentences.

Now, intimacy looks different:

  • Helping her brush her hair without frustration

  • Learning to read her facial expressions when words fail

  • Sitting in silence together on the hard days, knowing that just being there matters

There’s still love. Still commitment.
But the expression of it has shifted from romance to service—from passionate gestures to presence.

And that change… while painful… is still sacred.

2. Loving Through the Fog

Cognitive decline is one of Huntington’s cruelest symptoms. There are days when my wife repeats things, forgets events, or stares through me with no answer.

Those moments sting.
They challenge your identity—Am I still her husband if I am more caregiver, Healthcare assistant, etc?

But the answer is yes.
Because love isn’t rooted in recognition. It’s rooted in commitment.

“Love bears all things, believes all things, hopes all things, endures all things.” — 1 Corinthians 13:7

Even in the fog, I choose her. And that’s where love lives now—in the choosing.

3. The Quiet Grief of Lost Partnership

One of the deepest sorrows I’ve carried is the loss of shared decision-making. We used to dream together, plan vacations, talk about retirement. We made choices as a team.

Now, many of those decisions fall on me:

  • Finances

  • Medical care

  • Long-term planning

  • Which chores to be done

  • What groceries are needed and dinners to fix

I grieve the equal partnership we once had. I miss her voice in the process. It's hard and often lonely for these shoulders to bare. We no longer share the same bed now as often times her frequent restless movement has become disruptive to my sleep.

But I also honor what remains. She still offers insight in flashes of clarity. Her disease can make her a little obesseive compulsive in repeating things so she can be a great reminder to do something. She will constantly remind you until its done. She still smiles when I bring her flowers. And even if she can’t contribute in the same way, her presence still matters.

4. Physical Touch: From Passion to Comfort

Huntington’s impacts muscle control and involuntary movements, which makes physical touch more complicated.

But we’ve found new ways to connect:

  • A kiss on the forehead during medication time

  • Rubbing her back while we pray before bed

  • Holding hands at church, even if her grip is weak

  • Tucking her in bed and telling her "goodnight"

These small gestures have become our love language. Not flashy—but faithful.

5. The Weight of Care and the Guilt of Distance

This is a hard one to admit: sometimes, I feel the urge to pull back.

Not because I don’t love her—but because caregiving is exhausting.
Emotionally, physically, spiritually.
And in those moments, I feel ashamed for needing space. I used to work from home when this disease began but now, I work from elsewhere. To focus on the job and in some ways to provide a respite.

But here’s what I’ve learned:

Love doesn’t require you to be everything all the time.

Sometimes love means stepping outside for a walk.
Sometimes it means accepting help.
Sometimes it means letting a trusted friend or family member take a shift so you can breathe.

It’s okay to both love fiercely and protect your own well-being. One doesn’t cancel the other.

6. Cherishing the Moments That Still Shine

There are still sparks—small but bright.

Like when we play our wedding song and she hums along.
Or when she remembers a funny story from our first date.
Or when she looks at me with those same eyes that made me fall in love.

Huntington’s may steal a lot—but it can’t touch every memory, every smile, every heartbeat that still pulses with love.

We’ve learned to celebrate the “now.”
To soak up every moment of clarity, connection, and joy.

7. The Love That Grows in the Fire

It may sound strange, but in some ways, our love has deepened through this journey.

  • It’s more patient.

  • More resilient.

  • More rooted in the sacred promise we made—not just to love in the good times, but to stand strong in the storms.

This isn’t the life we imagined.
But it’s still a life built on love. A different kind. A refined kind.
One that walks through suffering, side by side.

A Note to Other Spouses

If you’re walking this road too—caring for a husband, wife, or partner with Huntington’s or another chronic illness—know this:

You are not weak for feeling overwhelmed.
You are not selfish for needing time to cry, grieve, or rest.
And you are not alone in the quiet, confusing, courageous love you give every single day.  Life can be/is messy, its okay for your house to be as well!

Scripture That Sustains Me

“We love because He first loved us.” — 1 John 4:19

God’s love teaches me how to keep showing up—how to love without expectation of return, how to pour from a place of grace, not guilt.

Final Thoughts

Our marriage looks different now—but it’s still sacred.

We may not dance like we used to.
We may not have candlelight dinners or spontaneous getaways.
But we still have love.

And sometimes, that’s enough.

Resources & Support:

  • HDSA’s Relationship Resources

  • “Chicken Soup for the Soul: Living with Alzheimer’s and Other Dementias” (many stories applicable to HD caregiving)

  • Couples counseling through local hospitals or telehealth

  • Online support forums for caregiving spouses (Facebook, HDYO, HDSA chapters)

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Saturday, August 9, 2025

Blog 2: Becoming a Caregiver: What No One Tells You - Ready

 

“I didn’t choose this title. But I embraced it.”

One day I was a husband.
The next day, I was also a caregiver.

Not in name—no one came up and said, “Congratulations, here’s your new job description.”
But in reality—when the cooking, driving, finances, medications, appointments, and emotional support all shifted toward me—everything changed.

And while there are books and websites that can guide you through caregiving basics, there’s another side to this role that no one really prepares you for. So this post is for the silent warriors out there. The spouses, sons, daughters, and friends who’ve stepped into the fire of caregiving without warning.

1. You Will Grieve a Living Person

This is one of the hardest truths to put into words. When your loved one has a degenerative disease like Huntington’s, they don’t disappear overnight—but piece by piece.

You start to grieve the things they no longer do:

  • Laugh at the same jokes

  • Remember inside stories

  • Move with ease

  • Speak without effort

  • The trips and adventures you had planned together but will probably never complete now

Grieving someone who’s still in the room feels strange. But it's real. And it’s okay to name it.  I have caught myself at odd moments just almost in tears (and sometimes actual tears) in the thoughts of the person that she once was, and now, never will be again.

2. You’ll Learn More About the Medical System Than You Ever Wanted To

I’ve become part therapist, part nurse, part pharmacist, part personal assistant—and full-time advocate.

You’ll have to fight for:

  • Timely appointments

  • Referrals that don’t get lost and require follow-up

  • Medications that are covered and their side-affects (every so often we have to do medication changes and then I start a part-time job researching possible medications and interactions)

  • Professionals who listen

  • Community resources

No one gives you a handbook. But you learn fast that persistence is your best tool.

3. Your Own Health Will Be at Risk (Unless You Guard It)

This job is emotionally exhausting and physically draining. I’ve had weeks where sleep was rare, meals were skipped, and stress sat like a weight on my chest.

It’s why the data shows caregivers have higher rates of:

  • Depression

  • Anxiety

  • Cardiovascular issues

  • Immune disorders

And yet, taking care of you isn’t selfish. It’s necessary. Your loved one needs you whole, not just surviving.

What’s helped me:

  • Scheduled time away (even 30 minutes walking outside)

  • Respite care or adult day programs

  • Therapy (virtual or in-person)

  • Honest conversations with trusted friends

  • Find a hobby or interest group that gets you away from home for a couple of hours during the week.

4. People Will Say the Wrong Things

“Well, at least she still remembers you.”
“You’re such a saint.”
“I could never do what you’re doing.”
“Have you tried essential oils?”

They mean well. But their words sometimes land like bricks. There are days when all you want is someone to see you, not praise you. You don’t want a medal—you want a nap. Or someone to bring dinner without asking, or even just doing dishes, laundry, or simple house cleaning.

That’s why finding other caregivers or a support group has been life-giving for me. People who just get it. No explanations needed. Other times, you just need someone to listen to you.  Let you vent your frustrations, your tiredness, etc., and just hear you.

5. You’ll Discover Strength You Didn’t Know You Had

It’s not all hardship. There’s also a quiet, steady power that comes with this path.

You’ll find:

  • Resourcefulness: You can make a bad day better with music and humor. One day I was having a hard day or week and I heard this song, "Gravity" by John Mayer.  That just said it all for me.

  • Patience: You learn to speak gently when emotions flare or words are hard to find.

  • Creativity: You find ways to adapt routines to fit shifting abilities.

  • Resilience: You get knocked down, but you get back up—again and again.  Some days you will do better than others and try not to be too hard on yourself.

6. Your Relationship Will Change—but Love Can Still Grow

Caregiving changes intimacy. Romance, roles, rhythms—they all shift.

At times I’ve felt like more of a nurse than a husband. Other days, like a protector more than a partner. And sometimes…like a ghost of the man I was before all this began.

But even in the hardest days, I’ve found new ways to love my wife:

  • Helping her feel beautiful when she forgets how to smile

  • Celebrating small wins, like making it through the day with no falls or confusion

  • Saying “I love you” when words are hard, but presence says it louder

  • Kissing her good night and tucking her in bed and then greeting her again in the morning.

7. Faith Will Be Tested—and Strengthened

There have been nights I’ve stared at the ceiling asking God, “Why her? Why us?”

And then…
There are mornings where His mercy shows up in unexpected ways—a good day. A kind nurse. A laugh we thought we’d lost. A moment of clarity that feels like grace.

“My grace is sufficient for you, for My strength is made perfect in weakness.” — 2 Corinthians 12:9

Those words have carried me more than once. Not because they erase the pain—but because they give it purpose.

Final Thoughts: You’re Not Just a Caregiver

Yes, the responsibilities are real.
Yes, the emotional toll is steep.

But you’re more than what you do.

You’re a human being walking through fire—learning, growing, grieving, and loving all at once. And if no one has told you this lately:

You are seen.
You are doing enough.
And you are not alone.

Resources for New Caregivers:

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Thursday, July 31, 2025

Blog 1:The Day Everything Changed – Our Huntington’s Diagnosis Story - Ready

 

The Day Everything Changed

I will never forget the moment my world shifted.

I was away from home on a business trip.  It was December 2018.  It was cold and snowy that day and as I was looking through the window of my hotel room admiring the view my wife called.  I answered and heard on the otherside of the line her crying, "I can't do this any more.  I can't go to work!".  The anxiety of her job and having to learn and train in new tasks was too overwhelming for her.

What is a husband to do when his wife calls upset in a plea for mercy, for grace, and fear of what might happen in the course of a 'normal' day?  There was only one thing I could do, to provide her comfort and relieve her fear, her anxiety..."It's okay dear.  Stay home, you can quit.  We will figure it out.".

Did I know if we were going to be okay? Nope! But faith has taught me to trust.  We were not ready to be a single income household.  I had just restarted my business for the third time and was now just beginning to grow it.

Fast forward almost 4 months, my wife still having severe anxiety and depression we tried different medications and then after a suicide attempt we knew we had to get much more help and figuring out what was happening to my wife.  

While my wife was getting the treatment she needed I reached out to a HD Centers of Influence to schedule an appointment.  We discussed her family history and decided to test.  They said the results would take about two weeks.

The day before my birthday we got the call.  My wife and I stood together in my home office. The room was sterile—too cold, too quiet—and the neurologist’s lips moved, but my mind could only focus on one phrase:

“It’s Huntington’s Disease.”

Everything else after that became a blur. I saw my wife glance at me, fear and confusion in her eyes, and I realized in that moment that our lives would never be the same as our fears were confirmed.

What is Huntington’s Disease?

If you’re unfamiliar, Huntington’s Disease (HD) is a rare, inherited brain disorder. It slowly breaks down nerve cells in the brain, impacting movement, thinking, and emotions. Over time, it robs a person of their ability to walk, talk, remember, and care for themselves.

There is no cure. And because it’s genetic, the news hits not only the present—but the future.

The Diagnosis: Questions Without Answers

In our case, the diagnosis came after months of unexplained mood shifts, memory lapses, and subtle changes that we wrote off as stress or other external factors. We weren’t looking for a life-altering explanation—we were hoping for something treatable.

I remember asking the neurologist, “What does this mean for us?”
The answer was honest:
“It’s a progressive disease. Symptoms will get worse. We’ll manage what we can.”

The medical language was clear. The emotional language was not.

Shock, Grief, and Survival Mode

In the days following the diagnosis, we didn’t cry—we just froze. There were prescriptions, referrals, and genetic counselors, social workers and follow up appointments. There were phone calls to make and decisions to start processing and potential studies to participate in. But behind all of it was a growing grief.

Grieving someone who is still here is a surreal experience.  Seven years later as I write this, my wife is a shadow of the person she once was.  In many ways, I have already lost my wife.  I now have a patient, an "adult child".

I wasn’t just losing the future I imagined—I was watching it slip away in slow motion. My wife was too. But we also had each other. And that mattered more than anything.

What I Wish We’d Known

If you’ve just received a diagnosis—first, breathe. And know this:

  1. You’re Not Alone
    Reach out. There are communities, Facebook groups, local chapters of the Huntington’s Disease Society of America (HDSA), and caregivers like me willing to listen.

  2. Prepare for a Long Journey, But Not Alone
    Build your “village” early. Doctors, counselors, friends, spiritual leaders—every single one is a support beam holding up your world. Additionally potential people that can provide hours or days of respite to give yourself (as a caregiver) a break.

  3. Start Documentation Early
    Keep a binder or digital folder. Medical notes, test results, doctor’s names, medication lists—it will grow, and you’ll be glad you organized from the start. Also, perhaps a  journal or event log when something happens so that when you discuss new behaviors or injuries you can refer back to and may also be able to establish certain patterns.

  4. Give Yourself Permission to Grieve and Feel Angry
    You don’t have to pretend everything is okay. Your emotions are valid.  There are many times I have shouted, yelled, been angry at what is happening to my wife; and I have been sad and depressed at the loss of a life partner and the adventures we or she won't be able to participate in.

A Turning Point

After the initial fog lifted, we made two decisions:

  • We would live with intention.
    Every good day, every laugh, every walk—even if slow—would be celebrated.

  • We would share our journey.
    Because someone else out there is sitting in a sterile room right now, hearing the same life-altering words we heard. And maybe, just maybe, our story can make theirs feel a little less alone.

Scripture That Anchored Us

“Even though I walk through the valley of the shadow of death, I will fear no evil, for You are with me.” — Psalm 23:4

That verse became more than poetry—it became our compass. We weren’t walking alone. And neither are you.

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Blog 4: Managing the Daily Chaos: Routines, Resources, and Realities

“There is no such thing as a typical day. Only rhythms we fight to keep.” When you’re caring for someone with Huntington’s Disease, no two d...