Tag Archives: alzheimer’s

AND THE GUILT.

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If you’re caring for a partner with dementia, hear this: You are not alone in your guilt.

You feel guilty.

Guilty for feeling lonely, even while your spouse sits right beside you.
Guilty for missing the conversations you used to have with your partner.
Guilty for wanting just one day when you don’t have to be the responsible one.
Guilty for snapping, for sighing, for thinking, I can’t do this another day.

Sometimes the guilt cuts even deeper:

  • Guilt over placing your spouse in a memory care community.
  • Guilt for making promises you have not been able to keep.
  • Guilt because your wedding vows echo in your ears—in sickness and in health—and you feel like you’re failing.

You are not failing.

Dementia can be a cruel thief. It steals conversations, shared memories, inside jokes, quiet comfort, and the daily rituals that make a marriage feel like home.

But here’s what it can’t steal: The fact that you have loved, and that you still love, even if that love looks different now.

Your love isn’t gone. It’s changed. But it’s still there.

Placing your spouse in care doesn’t mean you’ve stopped loving them. It means you’re protecting them. It means you’re protecting both of you.

Needing space doesn’t mean you’re abandoning them. It means you’re human.

You are grieving losses that happen while your spouse is still physically here—a grief that’s invisible to many around you. The stuff that makes your heart drop….it doesn’t even make sense to other people. And maybe you’ve stopped even trying to explain it to them. This is your journey, and it’s unique.

So if guilt is knocking on your door today, gently remind yourself:

You’re still here.
You’re still loving.
You’re still trying.

That’s enough.

And you deserve compassion, too.

More Education = Better Care!

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I am happy to do dementia trainings for various sectors, but I am always honored to be asked to train staff at nursing homes and memory care communities.

I am honored because the employees I work with are generally CNAs or resident aides, and I would argue that how well they do their jobs is one of the most important factors–if not the most important factor–in quality of care.

Has it ever occurred to you in nursing homes and assisted livings that the people who are paid the least have the most direct contact with the residents?

I am continually amazed at the varying levels of dementia knowledge of employees.

I am surprised by how much people know. I am surprised how little people know.

And level of knowledge, anecdotally, doesn’t seem to be related to experience in the field.

In the state where I live, employees who work with those living with dementia have to do an online module to learn about dementia and meet the state requirement. And that’s it.

If you or a loved one are considering care, a great question to ask is, “What type of ongoing dementia education does your staff receive?“

Research shows that facilities that invest in more dementia education for staff provide better care to residents. That’s not surprising, is it?

Dementia education….works.

Training programs for staff have been shown to improve staff-resident interactions, increase staff empathy for residents, and create more meaningful engagement with those living with dementia.

Dementia education increases staff knowledge, improves attitudes toward people with dementia, and boosts confidence of those providing care. They not only benefit residents but also positively impact staff by increasing job satisfaction and reducing burnout. 

If you want to look at the research studies, let me know, but the evidence is overwhelming.

Dementia education is linked to improved dementia care.

There is research about what types of education and delivery methods are most effective. When I plan a training, I go back to this research in designing something to meet the needs of the facility. I don’t deliver a cookie cutter training.

Not surprisingly, standard online modules (aka cookie cutter trainings) are not recommended as the best form of dementia education. However, I understand that facilities are challenged by staff turnover. I can’t come to your facility every week to train new employees. I get it.

Facilities are doing the best they can with the challenges and limitations that exist in the industry. Long term care is incredibly complicated.

Dietary staff, CNAs, resident aides, maintenance, and everyone else….You are doing a hard job and we need to give you the tools to succeed. And I want you to enjoy the important work that you do!

A friend of mine recently went with her father to explore an assisted living that serves those living with dementia. Her father is in the early stages of Alzheimer’s and wants to put a plan in place. (Can I just say–good for him!)

The assisted living was beautiful. A grand lobby. An enviable coffee bar for the residents. The resident rooms were spacious.

My friend, at my suggestion, asked what type of ongoing dementia education is required for staff.

She was told that they do an online module within 30 days of their start, and then yearly they must complete more online training. That’s in compliance with the state law.

My friend asked if they had opportunities for ongoing education. The response was that there was a lot of stuff out there on Tik-Tok now that shows how to “treat dementia people.”

After more conversations with other employees from the community, she was not convinced that providing excellent dementia care was a priority.

She heard some of the employees using non-dementia friendly language in chatting with her.

“Dementia person”

“Dementia sufferer”

“Senile”

People who work in facilities like this should be educated on dementia friendly language.

Despite the beauty of the building, they decided it wasn’t a fit.

While it is frustrating that some nursing home employees have a low level of knowledge about dementia, that lack of knowledge isn’t their fault. People know what we teach them. Let’s teach them.

Here’s the thing about work trainings. They can be dry and boring. I promise that I am not dry and boring. I may be weird and loud but not dry and boring.

I want employees to leave MORE excited about working with residents. I want to teach them to find the joy in their jobs and celebrate the wins. I want them to gain confidence and know that their employers in investing in them.

It’s not just about what I do, of course. There are other qualified individuals who do dementia education. (Make sure you check their qualifications and education!)

Turnover among nursing home employees in challenging for communities. If we can get people to enjoy working with those living with dementia, turnover decreases, the facility saves money, and staff provides better care.

To communities that make continuing education a priority…you deserve recognition. People should know that you are taking steps to invest in and educate your employees. Please talk about this when you market your community. It’s important.

Your commitment to education and, consequently, providing better care is admirable.

Empowerment in Action: Culture Change through Dementia Education

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Just a reminder that there are still some seats available for the Empowerment in Action conference on June 11.

I’m excited to talk about dementia and anxiety, and there will also be sessions on improv and dementia as well as how to de-escalate challenging situations. The day will end with a panel of individuals living with dementia.

This is a great opportunity for professionals as well as those who have a loved one with dementia. A student rate is available.

We are offering CEUs for Iowa nurses as well as social workers.

See below for more information as well as an opportunity to register!

Wednesday, June 11
8:30 a.m. – 2:30 p.m.
Hilton Garden Inn | 7213 Nordic Drive, Cedar Falls, Iowa

Join us for a unique opportunity to engage and share insights about how to improve quality of life for those living with dementia and their care partners. 

We will explore the following topics:

  • Dementia and Anxiety: Understand the relationship between dementia and anxiety, and explore effective strategies for minimizing anxiety among those living with dementia.
  • Dementia and De-escalation: Learn techniques to de-escalate challenging situations and foster a supportive environment for individuals living with dementia.
  • Creating Dementia-Friendly Communities: Discover how to build inclusive communities that support individuals living with dementia and their families.
  • Improv Principles in Dementia Care: Explore how the principles of improv can enhance care practices and make interacting with those living with dementia rewarding and fun!

Participants will leave the conference with:

  • An increased understanding of dementia care practices that enhance quality of life and empower individuals living with dementia and their care partners.
  • A commitment to person-centered approaches that emphasize empathy, education, and empowerment. 

Together, we can create a brighter future for individuals living with dementia and their caregivers.

You can learn more and register for the conference here: Empowerment in Action

The Who, When, and How: Telling People You Have Dementia

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Sometimes I have to check myself.

Sometimes I attempt to make things simpler than they are.

Once in a while, I am asked by someone if they should share their diagnosis of Alzheimer’s or another dementia with family, friends, co-workers, or community.

Example: A while back I chatted with a couple. The husband had been diagnosed with Alzheimer’s. They were uncertain about who they should tell. In the six months since diagnosis, they had told no one–not even their kids or closest friends.

They asked me if they should tell people.

I said yes.

I didn’t say, “Shout it from the rooftops,” but I might as well have.

When I spoke with them again recently, I asked who they had told. They looked at each other and seemed to not want to admit to me that they hadn’t told anyone.

My first thought was to tell them it was time. So I did.

It was time to tell others so others that others could support them.

But then I stopped. I realized that I sounded like I was disappointed in them. Like they were kids who had not done their homework.

I had to back up and think about all the reasons why it’s hard for people to disclose a diagnosis of Alzheimer’s or another dementia.

When I told them to tell people, I was ignoring a host of contextual factors.

So why don’t people disclose their diagnosis?

  1. Some people are just private people. And once the news gets out there, it’s out there. You can’t take it back.
  2. Individuals living with dementia may fear that disclosing their diagnosis will lead to others questioning their independence or capabilities.
  3. Each person copes with a dementia diagnosis differently. For some, keeping the diagnosis private allows them to process their feelings without external pressures or judgments. It may take some people longer to open up about the diagnosis.
  4. In some cultures or families, discussing health issues may be seen as inappropriate.
  5. A dementia diagnosis can feel like a loss of control over one’s life. Keeping the diagnosis private allows individuals to maintain some level of control over their situation.
  6. Maintaining a sense of normalcy in daily life can be crucial for individuals with dementia. They may want to continue engaging in social activities, work, or hobbies without other people reminding them that they have dementia.
  7. Many people fear that disclosing a dementia diagnosis could alter the dynamics of their relationships. They might worry that friends and family will treat them differently—either with excessive concern or a lack of confidence in their abilities.
  8. Individuals may choose to keep their diagnosis private out of a desire to protect their loved ones from emotional distress.
  9. Let’s face it. There is still a stigma that comes along with dementia. It’s a medical condition–yet many associate it with incompetence and lack of intellect.

And, for all of those reasons and others, I have to understand that I cannot tell people what they should do.

I want to encourage people to let others know when they need support. You can’t expect support when people are in the dark.

And yet, I cannot dictate the who and the when and the how.

Also, in my perfect world, when you tell others you have dementia, you get support. I know that’s not always true. Sometimes you tell people and they let you down.

I did happen to ask that couple why they had not told anyone about his dementia. Their daughter was getting married in a few months. They wanted to wait until after the wedding.

I wanted to tell them they should tell people before wedding in case they needed a little extra support during that time….. but I didn’t.

Because I don’t get to tell them what they should do.

Empower Dementia Strategies: Zoom Consultations for Families

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By request, I’ve decided to start doing a limited amount of Zoom consultations for families impacted by dementia…and I started a company called Empower Dementia Strategies.

I’ll also be doing trainings and consultations for senior living facilities, as well as creating handbooks, manuals, and other resources for employees who work in dementia care.

I’m still working on branding, social media promotion, and all the other stuff I need to do that I’m not that good at. I am knowledgeable about dementia and relatable when I talk about it, so perhaps I won’t get too fancy with the marketing and will allow my reputation to speak for itself.

You can read more here: https://elaineeshbaugh.org/consulting/

And if you are interested in doing a Zoom consultation with me, you can fill out this form: https://forms.gle/AnrVt7oeE4y3ugTE6

Feel free to email me at dreshbaugh@gmail.com.

Dementia Friends Zoom Training (February 17 @ 6pm CST)

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Hey all!

I will be doing a zoom Dementia Friends training through Dementia Friends Iowa (https://dementiafriendlyiowa.org/) on Monday, February 17, at 6 pm CST.

What will you learn at a Dementia Friends training? We will cover the basics of dementia, how it affects people, the different types of dementia, key signs and symptoms, and most importantly, how to interact with and support something living with dementia.

You can sign up here:

Sign up for virtual Dementia Friends!

If this session doesn’t work for you, you can find more opportunities here with various (and awesome) trainers across the state:

Become a Dementia Friend!

Dementia and the Decision (aka When Can My Loved One No Longer Live at Home?)

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I predict I will get some mean messages over this one. Some of you will message me and say that you hope my kids put me in a nursing home.

Well, the joke is on you. I don’t have kids.

Here goes.

Placing your loved one in a memory community, assisted living, or nursing home is often an act of love.

It is rare for a someone living with Alzheimer’s or another dementia to stay home through the end stage of dementia. And, when they do, it is generally because the family can afford extensive amounts of paid in home care or the family is large, flexible, and committed enough to provide 24/7 care.

But let’s talk about when there is one primary caregiver who does not have paid in-home help and has family and friends who, even though they can provide occasional respite, are not able to provide day-to-day care.

Maybe they live far away. Maybe they live close and have time commitments such as kids and work. Perhaps there are emotional or physical reasons they can’t step in to provide day-to-day help. Or, there might be four sons who live within a mile that are just unwilling to stop by and stay with their mom while their dad goes to the grocery store.

Most of our homes are not designed for someone living with dementia…most of us are not trained to provide extensive medical care…maybe you are at risk of an injury in providing physical care to your loved one…(maybe your husband weighs 230 pounds and you barely hit 120)…I could go on.

There is a point where someone living with dementia should not be left home alone. There’s no universal rule for when this occurs, but I would argue that if someone could not pick up the phone to call 911, you should strongly consider whether or not they should be home by themselves.

What are the requirements you might use to determine if a child is able to stay home alone? Can they use the phone? Would they wander away from the home and not find their way back? Will they have substantial panic when you leave or when they remember you aren’t there?

And when someone with dementia is unable to be home alone, caregiving needs are substantial and (I would argue) impossible to meet if there is one caregiver without support.

There are times in life when the optimal decision doesn’t seem that great. Sometimes the best decision is the least bad of a bunch of options. Making a decision for someone to move to a nursing home or assisted living? Perhaps it’s one of those times.

Of course, you might hear that people move to facilities and immediately the progress of of their disease quickens. Sure, that happens, but there is a bit of error in thinking here. You usually place someone because they are declining, and when they continue to decline, we blame the facility. Maybe they are declining because this is a progressive disease process.

Trauma can exacerbate the disease progress, and we often wait until a trauma (a fall, getting lost, etc.) happens to place someone in a facility. Then the change in environment happens in the center of a trauma, and the dementia brain struggles more than it would have with this change of environment.

There should be no shame in placing your loved one in a facility. My dad was in a nursing home in at the end of his life. In fact, he was in 5-6 of them (some bad and some better) over his final six months. He was not thrilled to be there.

“Shoot me before you put me in one of those places,” he used to tell me. I’d tell him I didn’t love him enough to spend the rest of my life in prison. That, my friend, is the extent of a heartfelt conversation among the Eshbaughs. Maybe you can relate.

There were a lot of reasons he could not have lived with me at the end of his life. Physically, it would have not been possible. He was about 6′ 4”. I have chronic nerve pain in my back and have a spinal cord stimulator. I would have been useless in trying to help him move and transfer. My husband is strong, but he’s not a big guy, and there’s no way he could have moved my dad around without help.

We could not have afforded significant hours of in-home care, even if we could have found someone for the job, which is unlikely. And there’s this small detail of us having jobs. I don’t know how we’d pay for the house if one of us didn’t work…and there’s that health insurance thing. Neither of us could quit our jobs to provide care.

I haven’t even talked about relationship dynamics here–which is another issue entirely.

Whenever I hear someone say, “I could never put someone I loved in a place like THAT” I cringe. It’s a really insensitive and ignorant statement. And I won’t just smile and change the subject when someone says it. I am going to point out the reasons why people have to make this choice because I am not okay with how society shames those who place their loved ones in a facility.

Sometimes people thrive in facilities. Sometimes their quality of life improves.

Wives can be wives again–rather than just caregivers. Sons can stop arguing with their moms about bathing. Family can be family. Professional caregivers can take on some of the battles. Family can be the good guy in that whole good guy/bad guy dynamic.

If you have to make the choice to place a loved one in a facility, my heart is with you. It’s not easy. And you will feel…..everything. You will grieve. You may feel relief. And you may feel tired—because you’ve given every bit of energy you’ve had to keeping someone at home–and when they are no longer at home, you crash. You need to rest. That’s normal.

It’s also normal to feel like you betrayed someone. You didn’t.

Sometimes the caregiver dies before the person living with dementia. And sometimes that is indirectly attributed to costs of caregiving–stress, poor diet, compromised sleep.

I know a man with Alzheimer’s who told his wife after his diagnosis that knew he’d die from Alzheimer’s but they couldn’t let his Alzheimer’s kill her as well. He didn’t want them to give his Alzheimer’s any more power than it had. And she kept that in mind when it was time for him to move to memory care.

I have to say this…sometimes getting someone to a facility isn’t easy. Maybe you fib to get them there. Perhaps they are angry and don’t talk to you for a few weeks. I know of situations where law enforcement was involved. It may not be pretty. I’d tell you not to take it personally but that’s easier said than done. So I’ll just tell you that you’ll get through it.

Stop feeling shame. Stop feeling guilt. You are doing the best that you can. You kept your loved one at home as long as possible, and now it’s not possible.

And in this strange world of dementia, you sometimes have to make choices that wouldn’t have made sense to you previously.

You aren’t a bad person. You are just trying to love someone through a set of pretty challenging circumstances.

It Goes On

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Her husband had Alzheimer’s, so she became a caregiver. She never wanted to be a caregiver. It’s not like she filled out an application for this job. It’s just what you do when your partner has dementia.

She described it as a roller coaster of a journey, and she resented the trip. There were moments of joy. There was a lot of laughter. But overall she felt cheated. Cheated out of the trips she and her husband planned for after retirement. Cheated out of how she thought she and her husband could provide childcare for the grandkids. Just cheated.

She wanted some time to herself, but she never seemed to have it. She wanted her kids to come over and stay with their dad, but they never did. She told her friends she dreamed of being able to wander around Target aimlessly on a Sunday. And sometimes all she wanted was to be able to take a hot bath without her husband walking in and needing help with something.

She wanted to sleep through the night but hadn’t in a few years. She wished she had the time and energy to put in an old fitness DVD and do a workout. Her friends invited her to go out for dinner once in a while, but they knew she’d say no. Eventually they stopped asking.

Then her husband died.

And the strangest thing happened.

She didn’t know who she was.

Every other role in her life–friend, volunteer, mother, grandma, neighbor, reader, traveler–now seemed unfamiliar and uncomfortable. And she found herself yearning to be a caregiver again.

There was a sense of relief, of course, when she had more freedom. But she also just felt empty.

She didn’t realize it at the time, but the caregiver journey–as difficult as it had been–was a journey that made her proud. She had been a great caregiver to her husband. She felt a sense of accomplishment. When she looked back, she realized that her years of caregiving for her husband were sacred and meaningful.

And yet she still felt resentful and cheated.

But she’d go back.

If she could rewind time and re-live those experiences of bathing her husband and brushing his teeth and making sure he ate, she’d do it in a heart beat. It was exhausting. And frustrating. But it also gave her this feeling of warmth and purpose. It was like she was put on this earth to care for him. And she did care for him. She fulfilled her mission.

She had a hard time finding another role that gave her that sense of purpose. Being a grandma was fun, but her grandkids were getting to the age where they didn’t need her. She started going out with her friends but felt isolated because they couldn’t really relate to what she’d been through. She did some solo travel but it just made her realize that no one really needed her.

And she’s still figuring it out. She signed up at a gym and is doing some group exercise classes. She wants to volunteer at a hospice but the training isn’t for another month. She brings snacks to her grandson’s soccer games. She’s doing some reading on finding a purpose and living a meaningful life and makes fun of herself for the stack of self-help books on her nightstand.

She knows she will get there. She’s surprised that the hardest role she’s even taken on is so hard to let go. She hated all the stuff she now misses, and it doesn’t make sense. She’s angry at herself for not finding more joy in the daily caregiving grind.

We are all constantly re-defining our role and purpose in this life. We are all searching for meaning.

But she’s really doesn’t know why she’s here now, and she has faith she will figure it out in time.

And this brings me to one of my favorite quotes:

In three words I can sum up everything about life: it goes on. –Robert Frost

Just Say No to Comparison

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It’s the holidays, and my gift to you is that you will hear from me frequently. Just kidding.

Well, not kidding about hearing from me frequently, but kidding about it being a gift. Hopefully you have higher expectations for gifts this year.

But I am here. And I wish I could do more for those of you who read my blog regularly. I appreciate you, and you deserve the best possible holiday season. Maybe you don’t know how to make that happen. Maybe you are flying by the seat of your pants. But I am here and I am rooting you on.

Because the holidays and dementia. It’s a lot.

The holidays are hard. They can be joyful, peaceful, fulfilling, as well. They can be more than one thing.

They can be sad and rewarding. They can be difficult and joyous. They can be depressive and happy. They can be any combination of anything.

It’s not an either/or.

You get to feel whatever you feel, and it may be all over the place if you live with dementia or are a care partner. Or if you’ve lost someone recently. Or even not so recently. Or if you’re divorced or struggling with chronic illness. Or if you are struggling financially. Or if you are going through IVF.

It seems like many of us have complex situations that put us on the holiday struggle bus.

And we watch Hallmark movies (well, I don’t because the plot is the same every time and I am the least romantic person on earth) and have these expectations that our holidays will end on a happy note with a bow wrapping it all up. And then those sappy commercials with those happy harmonious families celebrating together…

Comparison is the thief of joy.

I didn’t make that up. I just Googled it, and it sounds like the quote is attributed to Teddy Roosevelt.

If you prefer, “Comparison is the death of joy” is attributed to Mark Twain. I will go with the Mark Twain version because I lived in towns on the Mississippi for the first 18-ish years of my life.

When we talk about comparison in this context, we think of the comparison between ourselves and others. The comparison between our holidays and the holidays of our neighbors. Our meager light display and the full-blown light show down the street with that giant blow-up reindeer.

Your family has been impacted by dementia. You might look at families you know and even families on TV and in the movies. Your family is different than those families. You will celebrate the holidays in a different way than other families.

When we try to mimic other families, we are often disappointed. We are not them. Even at times when we don’t want to be us, we are still us.

Sometimes the comparison that kills your joy is your comparison of past and present. The holiday season now versus the holiday season 5 years before Mom’s diagnosis. New Year’s Eve last year when Dad was around to celebrate versus now when you watch the ball drop without him.

Sigh.

Your family is not only different from other families but different from how it used to be.

It’s an obvious statement. But think about it for a sec.

Maybe the rituals you’ve always found important, like midnight mass or the all day holiday gathering with the grandkids, don’t work anymore. When you are different, you need to change.

Don’t put square pegs in round holes.

Even if your peg used to be round.

I didn’t make up the first part (although I can’t find who I should credit) but maybe I made up the second part.

Have the best possible day.

If it helps, here is a picture of our kitten, Gladys.

I am pulling out all the stops here, folks.

Calico kitten

Dementia and the Holidays: My Message to You

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Happy Holidays–

I am cheating this morning, friends. I was going to write you a holiday message, but I realized I already wrote the blog post I wanted you to read back in 2016. (Can you believe I’ve written this blog that long?) So–why reinvent the wheel, right? Especially because I am not ready for the holidays. Heck, I am not even ready for today. Here’s goes…this was originally posted in December of 2016.

Oh, and also…here is a video of my dog Ernest wearing pajamas. Turn the sound up. I added music. I am who I am, folks. https://www.instagram.com/reel/C0269qoMUac/

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I’m awake late into this Sunday night and rather than watch more reality TV or spend more money on Amazon.com, here I am with my laptop sitting in bed.

And I have a message for my families impacted by dementia. Caregivers, this is for you. The more overwhelmed, burnt out, and broken you feel, the more I want you to read this.

I wish you a happy holiday season. Or, for some of you who are really struggling, maybe happy seems a bit unrealistic. In that case, I wish you moments of happiness within a season of survival. I hope it’s not as a bad as you think it might be. Maybe it’ll be kind of like going to the dentist. The experience isn’t usually as awful as the expectation.

The holidays are a lot of fun–most of the time–for many of us–unless they aren’t. I work with many families affected by Alzheimer’s or a related dementia who look forward to Thanksgiving, to Christmas, to New Year’s…and have the most joyous time. Dementia by no means disqualifies you from having a wonderful holiday season. However, it can create some challenges.

Recently I’ve heard the following statements from family members of those with dementia:

“The kids are gonna come back to town and realize how much Mom has changed. They’re gonna tell me to put her in a home and I’m not ready.”

“My wife has dementia and I’m supposed to take her to this party. They won’t take no for an answer, but it’s gonna be a disaster.”

“I want to bring him home from the nursing home for Christmas, but I’m worried he’s gonna get aggressive when he realizes we’re taking him back.”

“I’m dreading another Christmas dinner at the assisted living where we all act like we want to be there.”

“I hate watching the grandkids around her. She gets so frustrated with them. She yells at them, and they don’t understand why.”

“Dad says totally inappropriate stuff now. I don’t know where I should take him and where I shouldn’t. And he has these angry outbursts. I am praying Christmas day is a good day for him.”

If someone in your family is impacted by dementia and you find yourself making statements like this, you’re not doing anything wrong. This is tough.

It’s not just dementia that you’re dealing with here. It’s your family dynamics. It’s friends who don’t understand. It’s people who still think dementia is about “people becoming a little bit forgetful when they get old.” You live in a world where people still don’t get it.

I don’t have any magic advice. The best I can do is to tell you that you may have to change your expectations. You may need to force yourself to find small blessings or moments of joy within what sometimes seems like a trudge through snake-filled quick sand.

The people who cheerfully work at the nursing home on Christmas day.

The neighbor who understands you are overwhelmed and shovels your driveway.

The joyful expression on your mom’s face when she sees she has just received a gift–even though she already opened that gift hour ago.

The friend who unexpectedly delivers a homemade fruitcake with a card. (And, no, it doesn’t matter if you like fruitcake.)

The families of the other residents at the nursing home who try, as hard as it is sometimes, to spread some Christmas cheer.

If you look hard enough, you’ll see the positive. I promise it’s there somewhere–for all of us. It gets buried when we go through rough times, but that’s when it’s the most important to uncover it.

And one more thing…this is important…you may have loved ones who visit from out of town and haven’t seen the changes in your family member with dementia. They may be taken aback at these changes, and they may imply or outright state that you are doing something wrong as a caregiver.

They will tell you about the internet article they read about vitamin E and dementia. They might suggest that your family member should be in a nursing home. If they are in a nursing home, they may suggest that your family member shouldn’t be in a nursing home. They may suggest your family member with dementia visit a chiropractor. They know A LOT about dementia…because they have seen a bunch of articles pop up on their Facebook feed. (Yeah, that’s sarcasm on my part. And, no, I’m not sorry.)

I don’t mince words on my blog, so here goes: SCREW THOSE PEOPLE. I’m sure they are well-meaning, but I give you permission to turn and walk away. You don’t have to get into an argument. In fact, I recommend you don’t get into an argument because you have limited time and energy, and I don’t want to see you waste even a small bit on an unproductive argument. Promise me, however, that you won’t let these people make you feel guilty. And, hey, if you give me their names, I’ll call them and tell them to zip it.

This holiday reason, be realistic. Don’t be too hard on yourself. Fake a smile but acknowledge that this might not be the holiday season you envisioned. Don’t be afraid to say no to holiday gatherings. Don’t apologize for leaving early. Stop worrying if you didn’t buy a present for everyone who is distantly related to you by blood or marriage. If it works to stay in your routine, stay in your routine. Remember that people who are critical of your caregiving just don’t get it. And when something goes horribly wrong, don’t be afraid to cry or to laugh. Either response is perfectly acceptable in my book. No judgment here, folks.

Happy holidays. You’ve got this. You’re gonna survive, and you’re gonna find a few good, or even great, things to focus on throughout the journey.