Caring for someone with dementia is one of the most quietly heroic roles a person can take on. It’s a journey full of love and loss, connection and confusion, heartbreak and grace — sometimes all in a single day. But while the primary caregiver may carry the most visible weight, dementia affects entire families and communities. And it will take all of us — not just professionals, but friends, neighbors, churches, and extended family — to rise and meet the growing needs of those living with dementia.

If someone you know is a caregiver, we want to speak directly to you.

You may have said, “Let me know what I can do.” And while that’s a kind and well-meaning phrase, it often puts the responsibility back on the caregiver — the very person already running on fumes.

Let’s move beyond that. Let’s step in, with love, intention, and practical support.

---

I Will Never Forget What Janine Did

It was late summer of 2008 in northern lower Michigan. My daughter had just been diagnosed with Type 1 diabetes, and we were in the ICU of our local hospital. Although we’d noticed some symptoms, the diagnosis hit like a gut punch — completely out of the blue. What I knew about Type 1 diabetes wouldn’t have even filled a sticky note. Overnight, our world changed.

Janine, the mom of my daughter’s best friend and a lifelong friend of mine, called and asked, “When is your meeting with the diabetes educator?”

“10:00,” I said, a little confused. “Why?”

Her response?
“Because I want to be there. I want to learn everything I can to help.”

To this day, tears still come to my eyes when I think about that moment. I was drowning in fear and overwhelm. And suddenly, someone was beside me — not with vague offers of help, but actually showing up. That gesture didn’t make everything okay, but it made the burden feel lighter. I felt less alone. I felt hope. It helped me believe we might actually find our way forward.

What does this have to do with dementia?

Everything.

---

Dementia Caregivers Need Their “Janine”

When someone in your life is caring for a loved one with dementia, they’re carrying far more than meets the eye.

They are navigating:

• Financial challenges, including the high cost of care, medications, and medical equipment
• Scheduling chaos, juggling work, caregiving, family, and countless doctor and specialist appointments
• Behavioral changes in their loved one that can be heartbreaking, confusing, and difficult to manage
• Emotional grief, as the person they care for slowly changes — and the relationship they once leaned on feels like it’s slipping away
  

They are managing all of this without enough rest, often without support, and sometimes without acknowledgment. They need someone to stand beside them and say, “You’re not alone. I’m here.”

---

Practical Ways to Show Up

1. Learn a Little About Dementia

Dementia isn’t just memory loss. It affects how someone understands the world, responds to others, and handles daily tasks. Learning just a bit helps you become a more compassionate presence.

Start here: www.dementialife.care/events

---

2. Offer Specific, Simple Help — At Home or in Memory Care

Whether the person with dementia is still living at home or has moved into a memory care or assisted living community, there are meaningful and practical ways to help. Here are some ideas that make a real difference:

For Home Caregivers:

• “Can I sit with your mom Thursday morning so you can take a break?”
  
• “I’m dropping off groceries — what can I pick up for you too?”
  
• “I’m heading to the pharmacy — do you need anything?”
  
• “I’d love to bring over a meal or walk the dog this week.”
  

For Caregivers With a Loved One in Memory Care or Assisted Living:

• Stop by to visit the person with dementia — even short visits matter. Just being a friendly, familiar face can bring joy.
  
• Join them for a meal — mealtimes can feel lonely; sitting beside them communicates that they’re still seen and valued.
  
• Bring thoughtful supplies — hand lotion, favorite snacks, coloring books, family photos, or soft blankets can add comfort and joy.
  
• Check in on their care — ask staff how things are going and share any feedback with the caregiver. Your extra set of eyes is helpful and supportive.
  
• Send a card or photo — even if they can’t always respond, your presence is felt.
  

If the Caregiver Has a Difficult History With Their Loved One:

• Be a buffer. If the caregiver has experienced a painful or complicated relationship with their loved one, simply being present can be a powerful support. Offer to accompany them to a visit, or even visit on their behalf. You can be a gentle bridge between them and the person they’re caring for — someone to absorb some of the emotional weight, to witness the hard moments, and to offer encouragement afterward.
  
• Reassure without judgment. Let them know that complicated relationships don’t disqualify them from being loving — and that it’s okay to feel a mix of emotions, including grief, anger, compassion, and sadness all at once.
  
• Help them set boundaries when needed — or honor the ones they’ve already set. Sometimes, caregiving means overseeing care from a distance. That still counts. That still matters.

3. Check In Without Expecting Anything in Return

Send a text. Leave a voicemail. Mail a card. Just say, “Thinking of you today. You’re doing an amazing job, even if it doesn’t feel like it.” Your words can be a lifeline.

Whether it’s a meal, a moment, or a mindful presence — these small, intentional actions can remind someone they are not alone in this journey.

4. Be Present, Even If It’s Hard

You may feel unsure of what to say. That’s okay. Just being there — making space for laughter, for tears, for ordinary moments — helps keep the caregiver and their loved one connected to the life they still have.

---

5. Be Part of Their Circle of Support

Form a small, informal care team. One friend brings meals. Another helps with errands. Another checks in each week. When the burden is shared, it becomes bearable.

---

The Gift of Being Needed

Here’s the secret: this isn’t just about what they need. It’s also about what you will receive.

When you choose to carry someone else’s burden — even while carrying your own — something holy happens. You become part of something bigger than yourself. You rediscover compassion, connection, and purpose.

You become a living example of a simple truth found in Galatians 6:2:
“Carry each other’s burdens, and in this way, you show the love that really matters.”

And in giving of yourself, you just might find your own heart healed in places you didn’t even know were aching.

---

Together, We Can Do This

Dementia is growing faster than our systems can manage. It will not be solved with money alone. It will be solved by us — by everyday people deciding to be present, to be informed, and to act in love.

You are needed. You are capable. You are not too busy or too far removed to make a difference.

Be the one who shows up. Be the one who learns. Be the one who gives, even when life is hard.

Because one day, someone may say of you:
“I’ll never forget what they did.”

---

Want to learn more or share this with others? Visit us at www.dementialife.care for resources, workshops, and simple ways to get involved.

Together, we can build a world where no one walks this path alone.

Let’s talk about one of the most common, the most difficult, — and the least talked about — challenges in dementia care: bathroom issues.

If you’re helping a loved one who’s forgetting how to use the toilet, having accidents, or resisting help with personal care, you’re not alone. These moments can feel overwhelming — but with the right tools and mindset, they can be managed with compassion, dignity, and even a little humor.

At Dementia Life STL, we’re here for the everyday, behind-the-scenes work that no one sees — but that matters more than words can say.

---

When the Role Reverses: Caring for a Parent in the Bathroom

Helping a parent with personal care is deeply emotional. You may feel:

• Awkward
• Embarrassed
• Overwhelmed
• Heartbroken
• Guilty
  

You’re stepping into a role reversal most people are never prepared for. You’re doing something intimate and vulnerable — for someone who once did everything for you. That takes incredible strength.

These emotions are normal.

How to Handle the Discomfort

• Name the feeling – “This is hard” is a valid truth.
• Pause and breathe – Center yourself before entering the space.
• Remind yourself of their “why” – The person can’t help the restroom challenges they are facing
• Remind yourself of your ‘why’ – Love. Loyalty. Compassion.
• Use humor when appropriate – It can diffuse tension and create connection.
• Seek help and community – Find others who are also on a journey of caring for someone with dementia and lean on each other.

You are allowed to feel uncomfortable and do the hard thing anyway. That’s courage. That’s caregiving.

---

Why Bathroom Challenges Happen

Restroom needs often become more complex as dementia progresses:

• Memory loss – Forgetting where the bathroom is or when to go
• Mobility issues – Trouble getting there in time
• Communication – Inability to express the need
• Visual/spatial changes – Bathroom doesn’t “look right” to them
• Incontinence – Can increase over time
  

Sometimes, people simply get distracted or can’t process the signals their body is sending them.

---

8 Caregiver-Approved Tips That Work

While restroom challenges may never go away, there are some things you as a caregiver can do to make it easier.

1. Create a Routine

We can’t stress enough how important a daily routine is in dementia care! Someone with dementia is typically unable to guide themselves through a path that includes the daily essentials for wellness – nutrition, hydration, movement, and restroom needs. It’s SO important to encourage bathroom visits every 2–3 hours, even if they don’t ask. Try:

• First thing in the morning
• Before and after meals
• Before bed
• Before leaving the house

When eating, hydration and movement happen close to the same times every day, restroom needs become more predictable too – which will make it easier on everyone involved!

---

2. Make the Bathroom Easy to Find

• Leave doors open and lights on
• Use clear signage with images
• Consider motion-sensor lights at night

---

3. Improve Visibility & Comfort

• Use a brightly colored toilet seat to increase visibility
• Add non-slip rugs, grab bars, and a raised seat
• Remove clutter to prevent confusion and distraction

---

4. Simplify Clothing

• Elastic waistbands
• Velcro closures
• Avoid belts, zippers, and buttons

Quick, easy removal makes success more likely.

---

5. Use Incontinence Products with Confidence

Adult briefs, pads, or pull-ons can make life much easier. Choose what fits their level of mobility and dignity.

When to Change Briefs:

• After a bowel movement or major leak
• Every 2–4 hours during the day
• At bedtime and first thing in the morning
• Anytime they feel wet or uncomfortable

How to Change Briefs:

1. Gather supplies – Gloves, wipes, barrier cream, clean brief, disposal bag
2. Offer privacy – Close doors, speak reassuringly
3. Clean thoroughly – Wipe front to back, gently
4. Check skin – watch for redness, rash, open sores, blisters, skin breakdown in folds or pressure points
5. Apply barrier cream – Helps protect skin
6. Dispose discreetly – Use a scented or sealed bag
7. Wash your hands and breathe – You just did something loving

6. Approach and Respond with Calm and Kindness

Accidents are inevitable, and in these deeply vulnerable moments, it’s so important to prioritize dignity. 

Say:

“Let’s get you cleaned up. You’re okay.”
“It’s no big deal—we’ll take care of it.

Avoid:

• Shaming
• Rushing
• Scolding
• Showing frustration or disgust

Be mindful of their history. Some individuals living with dementia may have experienced trauma earlier in life — such as abuse, neglect, or assault — that they cannot express or recall clearly. Being touched or exposed during personal care can unknowingly trigger fear or resistance.

That’s why gentleness matters:

• Announce each step before you do it
• Ask permission, even if they can’t respond with words
• Make eye contact and offer reassurance
• Use slow, calm movements to maintain trust

Your respectful, patient approach helps restore a sense of safety and dignity — especially for someone who may no longer be able to ask for it.

---

7. Plan Ahead When Out

• Pack a “go bag” with extras – briefs, wipes, and dry clothing
• Know restroom locations
• Use companion cards to discreetly explain behaviors if needed

---

8. Talk to the Doctor

Significant bathroom changes can signal:

• UTI
• Constipation
• Medication side effects
• Dehydration
• Other medical conditions

Keep a care log of changes and concerns, and bring them to the care team.

---

It’s Not About Control—It’s About Compassion

These challenges aren’t a sign of failure on the part of the person with dementia OR on the part of the caregiver. They’re part of the dementia journey—and you’re doing something extraordinary by showing up with care and consistency.

Every trip to the bathroom, every changed brief, every awkward moment—you are preserving their dignity and meeting a need with love.

That’s what caregiving looks like.

---

Final Encouragement

This is sacred, quiet work. It’s not always talked about, but it’s deeply human.

If you’ve ever wiped tears while wiping someone clean — you’re not alone.
If you’ve ever felt like you couldn’t do it, then did it anyway — you’re not alone.
If you love someone through the hardest parts — you’re a hero in plain clothes.

At Dementia Life STL, we’re with you. And we’re so proud of you.

---

👋 Share Your Tips!

Have your own bathroom-care hacks or wisdom to share? Send them to contact@dementialife.care — you never know who you’ll help.

Who knew the 2016 Summer Olympics could help me figure out how to communicate with my mother.

I’ll get to that, but first, a little background.

My mother and I have never seen eye-to-eye and were great with arguments and eye rolls. When she was diagnosed with Alzheimer’s Disease around 2009, it got even harder. If you are reading this, I know you get it. Getting the same questions over and over again is exhausting, annoying, and infuriating. If you haven’t figured it out yet, the absolute worst thing you can do is say, “Mom, I just told you that three times in the last hour.”

Yep, trust me—it won’t work.

If your father (her husband) is an uber-high Type A and was in management his entire life, not having her remember or do what he said is also unpleasant.

My mother’s name was Fran. She stood 4’10½” at her tallest and weighed in at a solid 95 pounds for most of her life. She was a bundle of energy. She taught high school, and big football players cowed to her. Needless to say, she could hold her own and send you running with “that look.” She always said ‘dynamite comes in small packages,’ and Little Frannie proved that.

Fast forward to 2016.

She was hospitalized for something, probably an extreme UTI. While she was in the hospital, she was asking me about her friend Eustacius and whether she had decided to buy the house. I thought to myself, ‘who the heck is Eustacius, and what house are you talking about?’
I just kind of said I hadn’t talked to her and we moved on.
That was my first experience with Hospital-Induced Delirium. The National Institutes of Health defines it as “a temporary but severe form of mental impairment that can lead to longer hospital stays and negative long-term outcomes, commonly acquired by elderly patients in acute care settings. Up to a third of patients 70 years old and above experience delirium, and the rate is much higher for those in intensive care or undergoing surgery. Until recent decades, hospital-acquired delirium, which typically lasts anywhere from a couple of days to several weeks but can even last months, was chalked up to old age and not considered a condition to be prevented or treated.”
In layman’s terms, I would say it is like the “crazy” that comes with a UTI but multiplied maybe tenfold. In my experience, it cleared up the minute we got her out of the hospital environment.

Now, as to how the Olympics helped.

There was some controversy going on with the U.S. Swimming Team at the Rio Summer Olympics. Mother was in a rehab facility after the above-mentioned hospitalization and had a roommate who listened to the Olympics all day and night. This ended up burrowing into Mother’s head, and she felt certain the police were coming to arrest her because of some party and the damage that was done. She wanted to know
what my husband thought. I told her he knew nothing about it. I told her it was no big deal and I hadn’t seen any police around, so I was sure she didn’t need to worry.
After about three days, I finally walked out of the room for a little while and went back in and told her I checked with the nurses. They told me the police said they arrested the culprits and didn’t need to talk to her.

That was that. She was satisfied with that answer.

That was the moment when I realized that you need to get into the world of someone with dementia.

We feel so bad “lying” to our parents and loved ones, but we call it “situational fibbing” and, in my opinion, it is 100% acceptable.  Think about it this way-Your loved one wants to go see their parents, who have been dead 20 years.  What do you say?  I always said they were on vacation for a couple of weeks.  Why would you tell them they are dead and keep getting them upset every 15 minutes?   I found out after she passed, when I started volunteering for the Alzheimer’s Association, that this is a key tip. Their reality IS reality. Meet them there. Have fun. I think of it like improv. Just go with what they are experiencing. I found through this that humor was a great way for us to connect. When she had a hard time saying a word, I would just say, “Well, that was easy for YOU to say,” and laugh. She would laugh and say, “Nope, not really.”

What I learned:
* You cannot control the situation.
* Get into their reality.
* Find some “canned” answers for those repetitive questions and use them until they don’t work anymore (a dementia patient will not remember you already told them.)
* Find a communication style that works for you and your loved one. Ours was humor.
* Find resources. There are so many good resources to use. Do not be afraid to ask for help.
* Take care of yourself. It’s like on a plane—put on your oxygen before you help someone else.

As frustrated as you get (you will and it is OK—it is a real emotion), remember that it is ultimately an honor to care for them and these are days and memories you will cherish.

Caring for a loved one with dementia is one of the most demanding, emotionally taxing, and often isolating experiences a person can face. As counselors, we are uniquely positioned to support these unsung heroes—those who carry the weight of compassion fatigue, role reversal, and chronic grief with quiet resilience.

The Emotional Landscape of Dementia Caregiving

Caregivers of individuals with dementia often describe the experience as a “long goodbye.” Unlike other forms of loss, dementia progresses gradually, stealing pieces of a person’s identity over time. This slow erosion brings with it profound emotional distress:

• Ambiguous loss, where the person is physically present but psychologically absent
• Chronic sorrow, a persistent grief that resurfaces at every stage of decline
• Burnout and compassion fatigue, from the relentless nature of daily care

As therapists, it’s critical to acknowledge and validate these experiences. Caregivers often carry guilt for feeling frustrated or depleted—emotions that are normal and deserve compassionate exploration.

Therapeutic Goals for Dementia Caregivers

Effective counseling for these clients involves both emotional processing and practical empowerment. Key goals include:

• Naming the grief – Helping caregivers understand that their emotional response is not only valid but expected
• Boundary setting – Encouraging sustainable caregiving through shared responsibilities and outside support
• Identity preservation – Supporting caregivers in maintaining their sense of self outside of the caregiving role
• Psychoeducation – Providing information about dementia’s progression and behavioral changes to reduce anxiety and foster preparedness
• Mindfulness and regulation tools – Teaching caregivers to manage the stress of repetitive questions, aggression, or wandering with grounded emotional presence

Integrating Tools for Support

Many caregivers benefit from integrative strategies such as:
Narrative discussions that help to reframe their story from burdened to brave

Group therapy or support groups, which offer connection and a reminder: “You are not alone”
Creative interventions, including music and art, which can be shared with the loved one and serve as meaningful forms of connection.

The Caregiver’s Care Plan

Often, our most important role is helping caregivers create a self-care strategy that feels doable. That might include respite care referrals, gentle encouragement to reengage in activities they once enjoyed, or simply a safe space to cry and say, “This is hard.” Caregiving doesn’t come with a manual—but it does call for deep courage. And sometimes, that courage starts in the counseling room, or a hospital room or in a living room, with a single moment of being seen and heard.