Tag Archives: mental-health

Dementia and Hope and Grief and Joy and Loss

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In addition to my full-time job, I sometimes do speaking engagements and family consultations.

I think differently than I used to about “helping” families impacted by dementia.

I used to think I was there to help them fix something.

In the past few years, I’ve come to realize that I can’t fix anything.

And dementia isn’t fixable.

I can support people with dementia and their families in living with joy, humor, and peace. I can suggest ways that families can cope with changes that are difficult. I can assure families that they didn’t cause dementia and they can’t fix it.

Sometimes people want to meet with me to discuss their loved one living with dementia and I decline the opportunity.

If I decline, it’s usually because I realize they are asking me to do something I cannot do. They want me to help them change their loved one into the person they were five years ago. They want to bring back the person that existed before dementia. And I can’t do it.

I have met with families who wanted me to give them daily bootcamp style schedules with structured activities and nutrition. They wanted to know what puzzles to buy and what supplements to order.

They wanted me to help them reverse dementia.

Dementia involves progressive brain cell death. Over time, the loss of these cells causes the brain to shrink and makes thinking, memory, and decision-making permanently harder.

There are now medications that may slow the progress of Alzheimer’s (but not all types of dementia). This breakthrough is incredible, and yet doesn’t bring back the person you knew 10 years ago.

I am honest about something that is hard. And I’ve learned that’s not what everyone is looking for.

Sometimes I doubt that I am helpful at all. I almost stopped doing consultations for a while because I felt like I was letting people down. Over time…I realized I was talking to people who were asking for something that I could not offer.

Dementia can be cruel. I wish I could make it less cruel, but I can’t.

I don’t try to soften that or work around it. What I can do is help families understand what is happening in the brain and how those changes show up in daily life. When hygiene becomes harder, when eating changes, when anger or anxiety surface, when communication breaks down — those shifts are not random. They are neurological.

I spend a lot of time helping people think through decisions. How do you tell extended family about a diagnosis? How do you manage expectations? What happens when siblings disagree? Is someone still safe at home? If staying home is possible, what needs to change in the environment to make that realistic?

I’m not Susie Sunshine, and this is hard stuff.

What I think I am able to do is help families understand that there can be joy found in all of the gray area and unpredictability.

You can love your person with dementia and be frustrated with them.

You can be honored to be their caregiver and also angry when they can’t follow instructions.

You can understand that it’s the dementia talking and still be mad when they are disagreeable.

Joy may show up in small and unexpected spaces. Do not hesitate to be delightful when something actually goes right.

Maybe you make a small change in your home that helps your loved one be more independent and successful. You get to celebrate that.

Perhaps your loved one with dementia starts laughing more. You aren’t sure what they’re laughing at or why, but they’re laughing. And you love it.

Maybe you realize that your person with dementia loves a certain TV show and is more than happy to watch it for hours as you work on housework and paying bills. It’s a win.

I guess that’s the hope that I offer.

There’s joy, humor, hope, life…and there are a few wins along the day. There’s also grief and loss. There are moments of frustration, sadness, anger, and guilt.

All of it exists together.

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

What does it mean to be caregiver?

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What does it mean to be a caregiver?

It means rearranging your work schedule at a moment’s notice.

It means taking a deep breath and walking away before you explode.

It means advocating to healthcare providers.

It means staying calm in a crisis.

It means lowering your standards for the cleanliness of your house.

It means educating yourself.

It means adjusting to change.

It means rearranging your home.

It means rearranging your life.

And it also means….

Development of new skills.

An opportunity to make a difference.

Strengthened relationships.

Enhanced problem-solving abilities.

Opportunities for creativity.

A sense of purpose.

A chance to support others in similar situations.

Nothing is all good, and nothing is all bad.

You may be eager for your caregiving phase to be over. Then, when it is over, you want it back. You’d give anything to go back in time and give your loved one a bath again. Even though you hated giving them a bath.

You may experience increased frustration with your loved one, while at the same time you feel your love for them growing. As one caregiver told me recently, “I love her more than ever but I don’t want to be around her in this moment.”

You may want the support of your family, but the type of support they are capable of providing enrages you–and you want nothing more than for them to leave you alone. You don’t care if you ever hear from them again.

It’s a lot.

It’s complex.

It can be negative and it can be positive all at once.

It’s okay if you don’t know what you feel.

When people ask you how you are doing, you couldn’t be honest if you wanted to. You don’t know how you are doing.

You aren’t sure about your own health. You think you might have the flu, or are you just tired? Do you need to take a COVID test?

You aren’t sleeping. Is that because of anxiety? Maybe fast food has become a staple. You wish you cared about your own health. Sometimes you just don’t have the energy to think about yourself.

People are telling you to take care of yourself but they aren’t doing anything to help you take care of yourself. They haven’t offered to stay with your loved one or run any of your errands. But they said things like, “Honey, you really need to think more about your own health.” How helpful.

The people who you thought would be supportive aren’t that supportive. Or maybe they’ve gone AWOL. Even worse, perhaps they are physically present but oblivious to your challenges and sacrifices.

If you are lucky, there are people who step up for you. Often they aren’t the people you expected to be there. You try to focus on them rather than the people who aren’t there.

And in all of it, there are these moments that are somehow good. Maybe not good like good used to be. Maybe good in a different way. But good.

You take your mom to the emergency room and despite it being an overall terrible experience, there’s a nurse that is kind and empathetic and a great listener. There’s a woman at support group who invites you for coffee. There’s a neighbor who buys you a bottle of wine when she’s at the store or a co-worker who is more than happy to cover your shift.

Your primary care doctor takes a few extra minutes to talk about how caregiving is impacting your health. Your brother isn’t much help with dad, but his wife brings dinner by a few times a week.

Maybe your loved one goes to bed and you sit alone watching a sitcom and drinking a diet Coke. And you realize life isn’t so bad.

Perhaps your loved one finds something funny and can’t stop laughing. You don’t know what’s funny and you don’t care. You laugh.

You visit the nursing home and see that there are nurses and CNAs who care about your dad and find him to be grateful and cooperative (even though he is neither of those when you are around).

You realize that your wife enjoys coloring books. Or folding napkins. Or watching the Game Show Network. And it keeps her happy and occupied and anxiety-free.

There are moments when you really think you are going to get through this.

Pain and Joy and Depression and Anxiety and the Party

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Pain and joy can co-exist.

You’d think that intense pain means minimal joy, but that’s not always the case. We are complex beings, folks.

You can feel significant joy while feeling significant pain.

It’s not, “It was hard but it was good.”

It’s “It was hard and good.”

Life is bittersweet, right?

My dad died in May. He had schizophrenia and that made our relationship complicated. It’s Christmas, and my habit lately is to say I miss him but it’s a relief. I caught myself the other day. I miss him and it’s a relief. It’s not a contradiction.

Humans feel lots of things at once. It’s not like we process one feeling and send the next feeling to voicemail. You can’t put your feelings on silent. Sometimes they all ring at once.

You can celebrate and be sad. Every single one of us has stuff to celebrate and stuff to be sad about.

You can celebrate and be angry. You have every right to feel angry but (I mean, and) that doesn’t take away what you deserve to celebrate.

You can celebrate and bring your clinically depressed and anxious selves along for the party. I’ve done that a few times. It’s not like I don’t go to the party. I get all three of us dressed and ready. Maybe I even flat iron my hair and show up with a store-bought cake. Perhaps I don’t have a bad time.

I celebrate and I am depressed and I am on the verge of a panic attack. It can be two or more things and none of them changes the others.

Here’s to you if you are sitting around in the aftermath of a celebration trying to process. If you can’t quite put your finger on what you are feeling, that’s probably because everything you are feeling is tossed around like a giant salad. You don’t feel tomatoes or bacon or croutons–but tomatoes and bacon and croutons create something unique, and we feel uncomfortable because it’s unrecognizable to us and we don’t know if it is what we are supposed to feel.

It’s never all good and it’s never all bad. Nothing in life is all good or all bad, after all. And it’s going to change soon anyway.

And there is no “supposed to.” You aren’t supposed to feel a certain way. You’re not even supposed to do a certain thing. Let go of that. You feel like you feel and then you do what you do. And all of it is okay.

Merry. Happy.

On Christmas Day we got all three of our dogs to wear pajamas.