How to Manage Dementia Caregiver Guilt and the Holidays

Today on our program, we're diving into a topic that I haven't delved into much before: caregiver guilt during the holidays. To understand this concept better, I did some research, and here's what I found.

Guilt is typically associated with legal contexts, where one is either guilty or not guilty of a crime. As caregivers, we often experience misplaced guilt, feeling like we're not doing enough when we truly are. This guilt can stem from societal expectations or our own perceived shortcomings.

In this podcast episode:

0:01:14 Understanding Caregiver Guilt and its Effects

0:03:27 Strategies for Managing Caregiver Guilt

0:06:59 Acknowledging and managing caregiver guilt

0:09:39 Reframing negative thoughts and focusing on self-care

0:11:08 Creating space for self-care and making the best decisions

0:15:23 Strategies for Dementia Caregiving during the Holidays

0:16:08 Overcoming Caregiver Guilt during the Holidays

0:17:02 Prioritizing and Enjoying the Holidays as a Caregiver

Additionally, caregivers may feel guilty for taking time for themselves or prioritizing their own needs. However, it's important to remember that we can't pour from an empty cup and that self-care is crucial for our well-being.

November is National Family Caregiver Month, highlighting the rights caregivers have to take care of themselves. It's natural for caregivers to occasionally lose patience or feel frustrated, but we must be gracious and understanding toward ourselves.

Making unpopular decisions is another source of guilt for caregivers, such as taking away a loved one's car or considering assisted living. Balancing caregiving with other responsibilities, like work or marriage, can also evoke guilt.

While it's essential to acknowledge our feelings of guilt, we must challenge the notion that we've done something wrong. Our emotions are valid, but they don't always align with reality. Negative thoughts can spiral, leading to a sense of overwhelm and a belief that things will never improve.

Therefore, it's crucial to be mindful of our thoughts and not dwell in a space of guilt. By reframing our mindset, we can navigate the challenges of caregiving with resilience and hope.

Caregiver guilt is a common experience, with feelings of not doing enough and taking time for oneself causing guilt. Managing emotions and making decisions different from what others prefer can also lead to guilt.

However, I encourage a shift in perspective during the holidays. I suggest taking a moment to list all the things done for our loved one, realizing that we are indeed doing enough. Misplaced expectations from both sides can contribute to guilt, but focusing on self-care is essential.

I emphasize the analogy of putting on your oxygen mask before helping others, highlighting the importance of respite care and seeking support. I emphasize reframing frustrations and understanding that loved ones cannot control their circumstances.

Making decisions with the best available information is crucial, even if they may not be popular. Balancing responsibilities can be achieved by putting structures in place ahead of time.

During the holidays, I suggest smaller gatherings and creating space without guilt. I stress that as long as the person needing care is taken care of, it is okay to prioritize spending time with our own family. Saying no to overwhelming demands is okay, and prioritizing the well-being of loved ones is key.

I acknowledge my own misplaced guilt and provide strategies to navigate caregiver guilt during the holiday season.

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Transcript

Caregiver Guilt and the Holidays

[0:01] Welcome back to today's program. Today we're going to talk about caregiver guilt and the holidays.

And to be very honest and very frank, this is a topic that I honestly do not know that much about.

So I did a little bit of research. I researched what does it mean to feel guilt as a caregiver before we even get into the whole holiday conversation because I believe that caregivers feel guilty when they really should not feel guilty because the the word guilt, if you look at it, it mostly shows up in a court of law, in a legal perspective, right?

You're either guilty of doing something or you're not guilty of doing something.

Guilt is an emotion that we experience that can be misplaced, right?

We can have misplaced feelings of guilt when we really haven't done anything wrong.

[1:05] And so I want us to consider, I want you to think a little bit differently about what it means to...

Understanding Caregiver Guilt and its Effects

[1:14] Have caregiver guilt and what caregiver guilt really looks like and some strategies that we can do to to try to minimize the feeling. So what is caregiver guilt?

So caregiver guilt is one feelings of not doing enough, like you haven't done it enough.

Caregivers often feel like they should be doing more, even when they know that they're already doing a lot, right?

This can stem from our own feeling of certain expectations that we're putting on ourselves or when we think that society is telling us that we need to do something.

[1:57] So that's one part of it, feeling that you're not doing enough.

A The second way that caregiver guilt comes out is in our inability to then actually take time to take care of ourself, right?

We then feel guilty for taking time away from our loved one in order to attend to ourself.

We can then feel guilty for going out for a cup of coffee with a friend.

We can feel guilty for wanting to go to the gym and exercising so that we can take care of our health.

We can feel guilty that we are, we feel like we're being selfish or neglectful because we want to prioritize ourself over the person that we're helping.

And I want to right here just say to you if you're feeling that way, you cannot pour from an empty cup.

We cannot feel guilty for needing to prioritize ourself in this caregiving journey.

You have to take care of yourself. November is National Family Caregiver Month, which is one of the things that we drive.

[3:04] Awareness of family caregivers. So you do need to know that you do have the right as a caregiver to take care of yourself.

So I beg you to build in time because this is a marathon guys, it's not a sprint.

But feeling like we're not doing enough or taking enough or then we feel guilty for taking time for ourselves.

Strategies for Managing Caregiver Guilt

[3:27] Sometimes we feel guilty because we were short or we lost our patience, or we got annoyed or frustrated with the person that we're taking care of.

We are human, humans make mistakes, and we are going to sometimes have these normal feelings of we should have done it better.

But just because we aren't perfect doesn't mean that we need to feel guilty about it. Do we need to consider it if it's every single interaction?

Absolutely, but if it's an occasional thing, be gracious to yourself, sweet friend.

I know that it is a hard burden and a hard road that you are walking, so we have to give ourselves some grace.

[4:18] Sometimes we will experience guilt as a caregiver when we have to make decisions that are not popular, right? What kind of decisions do we make that are not popular?

We make decisions like it's time to take the car away. We make decisions like they're not safe to live alone anymore.

We make decisions like I cannot do this anymore and I need to consider a memory care or an assisted living.

So we frequently are making decisions that are not popular, right?

I know for myself when I had to be the one to take the car away, I was not the favoured child, right? It's a difficult...

Decision to do with and for anybody but the reality of the matter is that driving is a privilege it is not a right which means that we.

[5:13] When we are facing this we have bigger considerations than just the one person driving but then i felt guilty about it i felt guilty that i took the car away i felt guilty that i was frustrated because i know i had to drive them to all their appointments i felt.

I felt guilty for wanting my time back.

So I had a lot of emotions that I had to work through related to making decisions that weren't popular.

And that is certainly something that is a part of feeling guilty as a caregiver.

[5:48] Other ways caregivers experience feelings of guilt is in balancing all their responsibilities.

If you're still working full-time and you have to balance your responsibility of working and providing care for somebody or you're a wife and you're married and you're helping your parents and you feel guilty for asking your husband to help do something or the time that you're taking away from your spouse in order to be able to help your parents.

All of these are normal emotions that we experience and that can sometimes be misplaced.

The first thing you have to know is you acknowledge the feeling.

You acknowledge the fact that you feel guilty about it, but then you have to talk to yourself and say, are you truly doing something wrong?

Consider the legal description, again, of guilt, right? That's a legal determination.

[6:49] And if you're not doing something wrong, If you're not doing something from a harmful spirit, from a.

Acknowledging and managing caregiver guilt

[6:59] I'm out to get you type of perspective then your emotions are valid but they aren't reality um we feel what we feel for sure but that doesn't make them a fact it makes them a feeling and we acknowledge the fact that we feel what we feel but we don't stay there we don't wallow in it we don't sit and just ruminate and think on it over and over and over again because the way we think is the way we actually end up acting.

And what I mean by that is when we think about these negative thoughts and these emotions that we have and we keep thinking that way, eventually our thoughts lead us downwards. We start to spiral downwards.

And that is exactly when we start to feel like life is overwhelming, like you have no control, like things are too much to handle.

[8:04] And that you're never going to be able to do this in the long term.

So be careful about your thoughts, right?

Your thoughts are very powerful, and they are something that can truly make or break you in this caregiving journey.

So even though caregiver guilt is something that we do experience and something that we do feel, we need to be very cautious about staying there.

Because if we stay there, then very, very quickly, our whole entire world turns into doom and gloom and woe is me and nothing is going to ever get any better.

[8:47] So caregiver guilt, yes, is something that we experience.

Feelings of not doing enough, feeling guilty for taking time for ourselves, feeling bad because we've lost our patience and we are not doing a good job of managing our own emotions, feeling guilty because we've made different decisions than they would prefer, feeling guilty because we're doing a bad job of managing all of our responsibilities, or even feeling guilty because relationships have changed, the dynamics between our relationships have changed.

All of these things are valid, and I understand and that we feel these things.

But what I want us to consider is how do we not do these?

Reframing negative thoughts and focusing on self-care

[9:39] These, how do we not stay there? How during the holidays can we reframe this to be more positive?

How can we take the feeling, the feeling that you're not doing enough and just sit with it for a minute and say, list out on a piece of paper everything that you do do for the person that you love, because very quickly, then you will realize that you are doing enough, that you are enough to provide the care that they need.

And that sometimes what you're feeling is because of a misplaced expectation, either on your side or on the side of the person that you're helping for.

Sit with it for a couple of minutes and think about what it means to truly take care of yourself, right?

You cannot pour from an empty cup.

You need to be able to fill up your cup so that you can pour from it.

Think of the analogy, and I know many of us in the caregiving space use this analogy.

If you were on an airplane and your oxygen mask falls down and you were flying with a person who needs assistance, You don't put the mask on them first, because if you do and then you pass out, that person cannot help you.

You put your oxygen mask on yourself first.

We have to take care of ourselves when we are caregivers.

Creating space for self-care and making the best decisions

[11:08] What does that mean? That means getting respite care. That means finding somebody who can help you.

That means asking the deacons at your church to find somebody who can sit with you. That means asking people for meals so that you can maybe go take the dog for a walk.

It means looking for support. It means focusing on yourself.

[11:32] But that means you have to be active in actually creating that space for yourself so that you can take care of yourself first so that you can do this for the long haul.

When you feel frustrated and lose your patience, it is very easy to just say that, you know, you're not good enough, and I get that.

But when you are taking time for yourself, you will find that over time you don't get as frustrated, you don't get as short, and sometimes it just takes a minute to reframe your own thinking before you go in and help the person that you love with whatever they're needing help with.

I frequently have to stop myself and say they are not doing this on purpose.

They are not doing this to irritate me. They are not doing this to be hurtful or harmful or coming from a negative spirit.

They cannot control this. They didn't ask for this either.

And so when I reframe that it gives me a little bit more patience to be able to to stop and just not get as frustrated.

Understanding, you know, decisions that we make, when we, the way to reframe that one for yourself is.

[13:02] Yes, many of you guys know my story about boarding school and having been in boarding school and how terribly devastating that was for me and for many, many years how I struggled with that.

But I came to a realization and the realization was my parents made the best decision with the information that they had at hand.

They made the best decision, they had my best interest in mind when they made the decision to put us in boarding school for the circumstances that we were living in.

They felt it was better for us from an educational perspective to be in school in South Africa instead of in, say, an international school.

They considered all of the options, and they had my best interest in mind when they made these decisions.

What you need to give yourself grace with is that you, as the person making the decisions for the people who you are caring for as a caregiver.

[14:04] You are making the best decisions for them with the information that you have in hand.

And when you reframe it that way, it makes it easier for you to consider that sometimes you are going to make unpopular decisions. Any of you guys have kids that you had to tell no to?

Same thing, right? We make the best decisions with the information that we have in hand for the people that we love.

And the decisions that we make are not always going to be popular, but that is okay.

You can only make the best decision that you can with the information that you have at hand.

[14:47] How to balance your responsibilities, other ways to reframe that one, reframe it by thinking how can you put structures in place earlier than you really think that you need them so that you can actually create space for yourself and time in your own relationships and in your own work so that you can balance your other responsibilities.

So this is a shortie episode talking about caregiver guilt and the holidays and dementia and dementia caregiving.

Strategies for Dementia Caregiving during the Holidays

[15:23] A couple of things that you can consider related to the holidays, which holidays are always hard because things are not routine, things are not familiar.

We have a lot of people coming and going, lots of movements, maybe activity that isn't normally there.

So some ways that you can compensate for that during the holidays is change the way you do things maybe smaller groups of people, maybe having the person with dementia sit one place and having people come to them, limiting the amount of time that they get to spend there, but do not feel guilty for wanting to still have the holidays.

Overcoming Caregiver Guilt during the Holidays

[16:08] Do not feel guilty for wanting to maybe create some space.

As long as the person that you were taking care of is being taken care of, you have no reason to feel guilty if you choose to spend the holidays with your children as opposed to choosing to spend the holidays with your loved one with dementia.

The biggest thing is you as the person who is caring for them need to ensure that they are being taken care of throughout the holidays.

And it is okay to say no.

No is a possible answer. And it is okay to sometimes say no to all of the demands.

[16:50] If that means family is being, asking you to do things that you just do not have the bandwidth for, say no. No is a possible answer.

Prioritizing and Enjoying the Holidays as a Caregiver

[17:02] You have my permission to say no.

So I hope this little episode was helpful to you to consider your caregiver guilt and that your caregiver guilt might be misplaced.

I know mine certainly is at times.

And to give you a few strategies that you could maybe consider during this holiday period around Thanksgiving in order to be able to still enjoy your holidays, prioritize, make different decisions, and remember just keep your loved one's best interest in mind and it will be okay.

Disclaimer: These blogs, videos and any work done by Lizette Cloete OT, as a Member of Think Different Dementia, LLC, is given only as educational content and consulting work. This does not create an Occupational Therapist-Patient Relationship. The educational content and consulting work performed should not be considered medical treatment as an Occupational Therapist. The consulting work does not take the place of medical work normally performed by a licensed Occupational Therapist. Please consult a licensed Occupational Therapist for medical advice.

“Think Different” Dementia’s owner, Lizette Cloete, OTR/L graduated as an Occupational Therapist from the University of Pretoria in South Africa in 1992. She and her husband emigrated to the USA in 1993, and currently reside in South Carolina. They have 2 daughters and one son-in-love, 4 cats, one dog and 16 chickens.

Lizette has almost 30 years of experience as an Occupational Therapist in a variety of settings, the latest being in the home health environment. Among her many accomplishments, she served on the South Carolina Occupational Therapy Association’s Board of Directors from 2008-2014. She enjoys teaching on the topic of dementia, most recently presenting at a national conference on the topic “Dementia Made Simple”