Hope for living, loving and caring with no regrets!

The Many Emotions of Caregiving

Episode 18

Caregiving is filled with many emotions. Rayna Neises, ACC, your host, talks with Laura Beth DeHority, a Licences Marriage and Family Therapist, who specializes in supporting caregivers. Emotions are a big part of caregiving but often a silent part. Laura Beth shares about the many emotions experienced by caregivers and what anticipatory grief looks like.

Primary Emotions:

  • Fear of present, past, and future
  • Anger- the most passionate of the caregiver emotions
  • Guilt- caused by thoughts that you haven’t done enough for your loved one
  • Doubt and Confusion- irrational thoughts that are the outgrowth of fear, powerlessness, overwhelm, and guilt.
  • Bargaining- a tool used to move past the guilt
  • Isolation and Abandonment- feeling all alone, though you aren’t
  • Overwhelm- exhausted and lost the ability to ask for or receive help
  • Despair- sudden waves of pain, fear, and overwhelm
  • Crisis of Identity-feeling confused as to your purpose, your passion and who you are as a person
  • Resentment-a feeling of unfairness or irritation at the situation
  • Denial- avoiding the pain and disappointments involved in caregiving

Anticipatory Grief

  • The loss of hope due to the ramification
  • The stages are the same as other grief

Components of healthy grieving

  • Spiritual time
  • Physical activity
  • Focused/ productive time
  • Active playtime
  • Inactive downtime
  • Connection with supportive people

Transcript

*Transcript is an actual recount of the live conversation
Rayna Neises: Welcome to A Season of Caring Podcast where there’s hope for living, loving, and caring with no regrets. This is Rayna Neises, your host, and today I’m excited to introduce you to Laura Beth DeHority.

Laurie Beth is a therapist who specializes in working with caregivers and families who are touched by all forms of special needs. She works with individuals, couples, siblings, groups, and multigenerational families to provide support in areas of family roles, in communication, stress reduction, anxiety, depression, grief, and addiction. Laura Beth has received advanced training and is pursuing certification in brainspotting as specialized in non-traditional treatment method. We’re releasing trauma by working with the place in the body and in the brain where trauma is held. For more information, go to www.brainspotting.pro.  Welcome, Laura Beth. It’s great to have you today.

 Laura Beth DeHority: Thank you. It’s great to be here. Thank you so much for having me.

Rayna Neises: Well, I’m excited to be able to introduce my listeners to you and the wealth of knowledge that you have.   Can you just tell me a little bit about how you found yourself in a place of supporting caregivers?

Laura Beth DeHority: So originally I started off as a multigenerational caregiver, it was at a time when I had two small children. I was living on the West coast and my parents were living on the East coast. My mother had planned a surgery to have her knee replaced, and I was planning to come out and help care for her along with support from my dad and I received a phone call that my father had been, hospitalized with an emergency cardiac event at a different hospital.  Of course, all the best-laid plans went up in the air because now I was going to be caregiving both of them at different hospitals. So I got there, you know, put on my thinking cap, figured it out, got the car, went to the one hospital, went to the other. As I was going up in the elevator to see my father who was in ICU, the elevator door opens and they’re bringing in my sister-in-law on a gurney and she’s having a grand mal seizure.

Laura Beth DeHority: I am very aware that my family has no idea that anything’s going on. So I explained to the people, bringing her in who I am, and then I go out, tell my dad what’s going on, and then I go and call my family and I suddenly had this overwhelming feeling of being isolated and all alone. And it seems so ironic because I was actually surrounded by people and events and things, and yet I felt like I was on an Island and I realized that there needed to be someone to care for caregivers.

It was a number of years later before I actually, realized that the Lord was calling me to be that person. So, when my youngest went to high school, I went back to seminary and started, my master’s degree in marriage and family therapy. And I’m now a licensed marriage and family therapist in California.

Rayna Neises: That’s amazing because I think that isolation our listeners, I’m sure you completely relate to that, there are people around you who love you, want to support you, but still feeling so alone in the midst of that caregiving time.  I’m just so glad that there are people that will step into those roles of helping us care for our caregivers.

So describe a little bit the emotions that many of the caregivers are facing as they’re helping care for their loved ones.

Laura Beth DeHority: So for the context of our conversation, I’m going to start with the day of diagnosis. I do understand that for many, it’s before that, but I am going to use that just as a point of reference because we have, a short period of time to talk.  The day of diagnosis changes the lives of many people on the day that you received that diagnosis of the loved one in your care, a unique and ongoing grief process began for you.

The hard thing is that the grief process, which allows you to reach acceptance is often pushed aside, is greater concerns for your loved one, fills your time and energy. But carrying that unacknowledged grief along with the new and unexpected stress of managing time, finances, emotions, and decision making has a significant effect for loved ones like you and your family around you who are involved with care decisions.

Grief has more traditionally been tied to the loss of a loved one, but now we are starting to hear about anticipatory grief. Primary caregiver emotions are actually tied to that grief. So the first primary caregiver emotion that I want to talk about is fear. And that’s fear of the present, the past and the future.

Because fear is generally the first shockwave right after receiving the devastating news. Fear is often tied to a lack of education, resources, support, or even the caregiver’s own internal story around personal limitations, past and current circumstances, and racing thoughts that might cause you or another caregiver to forecast catastrophe.  As fear implodes into either denial or worry, it can result in most any of the other caregiver emotions until the caregiver moves from fear into a solid understanding of what is expected, along with the best and worst-case scenarios tied to a plan of action and resources. So when I have someone sitting with me, I asked them, do you find yourself planning to hope or hoping to plan?

Rayna Neises: Such a good question, because that fear does just completely overwhelm. The hope is not even in sight a lot of times. That’s such a great point. So other emotions?

Laura Beth DeHority: Yes. So anger, the most passionate of the caregiver emotions. The most common trigger to anger is interference with a goal. It is expected that an unexpected diagnosis would dash hopes and dreams for the relationship and a sudden unwelcome change to relationship roles. It can be an emotion with directly identifiable ties to something that’s important to you, the caregiver, or it can be an annoyance, like something that happened at target that sets off an emotional undercurrent.

Anger can be set off by such circumstances as unwarranted criticism, lack of consideration from others, or even an unhealthy pattern in a relationship or an accumulation of annoyances. If anger goes unchecked, it can cause irreparable harm to relationships and cause physical harm to the angry person or those who are their targets.  Forgiveness of yourself and everyone who is tied to your loved one’s care, including sometimes your loved one. Ouch, is the most effective means for overcoming anger.

Rayna Neises: So true. Because that person you’re caring for, there’s just times, that anger can arise just in this situation or in there not cooperating or not seeing things the same way you see them. So such a raw emotion and one that most of us as caregivers don’t really want to admit we have.

Laura Beth DeHority: So that leads to guilt, caregiver guilt is the product of thoughts that you haven’t done enough for your loved one? Yeah. It can be the flip side to resentment that the caregiver has for needing to devote so much time and energy to this loved one with a diagnosis. It can also be tied once again to unresolved issues with that person or others in proximity.

And here’s an ugly one. Comparing ourselves to other people or situations. It can also be a result of the caregiver’s own unresolved issues. Scripture, fortunately, is a treasure trove of wisdom on mercy and grace, and through our faith, we have been set free from shame process that thought often. Because if we don’t process it, it could become a platitude upon which we hide our shame.

Laura Beth DeHority: No, continue to seek the truth, which sets us free from shame so that we can have the strength and endurance to lovingly caregiver.

Rayna Neises: Such a good point. Guilt is such a huge piece for so many caregivers, and I love really pointing us to the true way to find our way out of that shame is definitely the truth of the scriptures and, being able to process through that. That’s great. So.  What other emotion is a big piece that you found?

Laura Beth DeHority: That brings us to doubt and confusion. And these are irrational thoughts. They feel so rational, but they’re not. They are an outgrowth of fear, powerlessness, overwhelm, and guilt. In order to not be sucked into the vortex of doubt and confusion. It is important for you as a caregiver to become clear about what capabilities you actually have. Established contingency plans and cultivate available resources and support inventories.  When you find yourself feeling worn down, take a moment to give yourself credit where credit is due and not be so hard on yourself. Caregiving is full of ever-changing and complicated situations, and despite your best efforts, sometimes things will fall through the cracks.

Rayna Neises: For sure. And I love that. Just stop and give yourself credit. You’re doing so much listeners as you’re caring for the person that you love. You are making so many decisions on your behalf and their behalf in the moment all the time, so you’re doing a good job even though you don’t see it, and it doesn’t feel that way sometimes.

]Laura Beth DeHority: So sometimes we start to bargain. We attempt to bargain as a tool to move past the control of anger. The reality is that an unhealthy bargaining is little more than false hope, and it serves as a temporary staff put into place, but it avoids a healthy grieving process in a healthy stage of bargaining. We as caregivers seek to find meaning in the suffering and loss through reaching out to others and telling their story. Healthy bargaining looks like reframing what is the new normal and how it can become the new okay.

Rayna Neises: Hmm. That is so wise. Reframing the new normal and how it can become okay. By processing through it and understanding it, you can find that it’s okay. That’s great.  And the next one?

Laura Beth DeHority: Is my old friend isolation, the paradoxical emotion. You are a person who spends an enormous amount of time and energy in the presence of a person, and yet, you can, and I promise you will find yourself feeling all alone as if the world has marched on and left you all alone. For many caregivers, a loss of balance has put the caregiver in a position of putting the needs of their loved one ahead of their own needs, and like I said in my earlier story, the morning that we started off, I was balanced and then all these things hit that I was completely unprepared for.

However, continuing in this state of imbalance is closely tied to the onset of depression in adults. We’re caring for a loved one. Feelings of isolation are often a cry for connection, spiritually, and with other supportive and caring people.

Rayna Neises: So listening to that feeling of isolation and realizing this is something that needs to be addressed. We need to do something different to find the balance that meets that need.

Laura Beth DeHority: And sometimes it’s just like Jesus, when he was caregiving, in order to not be alone and isolated, he needed to find time to be alone with his father. And that is my, therapy advice.

Rayna Neises: That’s great.

Laura Beth DeHority: So then comes overwhelm. The caregiver who’s constantly exhausted experiences, rollercoaster emotions, or they may have actually completely numbed out their emotions.  So sometimes as a result, they may have developed a poor appetite or eating habits may find themselves more prone to illness and have lost the ability to ask for or receive help from others. And that is when you’ve reached a point of overwhelm. If this is happening to you, it is important to take inventory of what you are able to stay on top of and ask for help.  Gain further information about support that is available and make space for self-care, including adequate nutrition, sleep, exercise, and connection to others who have gone through and have some understanding of what you’re going through.

Rayna Neises: Overwhelm is the primary thing I hear as I work with clients. Just feeling like there is so much and not even really being able to think anymore because it just feels like it’s pulling them all the time. Such great advice. Self-care is one of those things that we preach over and over and over again, and it’s a tough thing to find sometimes, but so important to be looking for it and know how important it is.

Laura Beth DeHority: And at the end, I’ve got some tips on how you could do self-care quickly and efficiently. So. If we stay in overwhelm too long, we can end up in despair, which is an early warning sign that you as a caregiver have reached the point of burnout. For some, it’s feelings that hit them either late at night with waves of overwhelm that disrupts sleep or quiet moments during the day there’s a sense of panic. I’ve heard it described as sudden waves of pain or a fear and overwhelm. These are feelings that can emotionally broadside you in these quiet and alone times. In the absence of helping and support, some people began to feel actually guilty for feeling despair.

It becomes closely tied to doubt and confusion, and this is a time when gaining support from a trusted and empathetic person such as Rayna or me can help the caregiver to avoid going into a deeper depression. This is the time, to enlist the help of a coach or mental health professional.

Rayna Neises: When we get to that point of despair, definitely really looking to find the help that you need at that point.

Laura Beth DeHority: When a caregiver is thrust into a role by a sudden and unexpected diagnosis of someone who they love. Prior to that, they may have had a full life of relationships, occupations, and interests. Many had a sustainable life balance. If you are starting to feel that your former life balance has been upended, it only makes sense that you could be left feeling confused as to your purpose, your passion, and who you are as a person.

Without some assistance to regain your previous balance, you can easily lose your true North and find yourself trudging along without meaning and feeling guilt for missing your old life. And that’s where resentment comes in.

This one that is so hard to talk about and sometimes even hard to face because it’s so closely tied to shame and injustice. Caregiver resentment is a feeling of unfairness or irritation, which can come on suddenly at the time of diagnosis and creep in overtime. For the reluctant caregiver caring for a relative where past relationships and events lead to caregiving more out of obligation than love. There was a clear path to resentment if the caregiver is alone in their role, resentment will often build up against those who are not taking on their piece of the load. For many, however, there’s just a general sense of resentment towards the overall situation. While many caregivers try to stop these feelings rather than acknowledge them to themselves or support of others, this is a mistake. The failure to process this resentment can lead to conflict, mental and medical stress-related illness, addictive behaviors, poor sleep and overwhelm. A good process provides a safe and appropriate forum for you as a caregiver to acknowledge and process feelings of resentment.

Rayna Neises: I see that as I support people in caregiving roles that resentment, like you, said, it creeps in. Sometimes in the beginning it’s obvious because you’re suddenly having to give up a lot of things, but the longer the caregiving season goes, the more I can see that resentment creeping in. So good to see that, really understanding it’s a normal feeling it’s typical to be feeling this way as life has changed so much. But again, finding a way to process through those feelings, get the support that you need. So important.

Laura Beth DeHority: And then if I had to vote, I would vote denial as the most dangerous of caregiver emotions. And here’s why. If those who love the person don’t acknowledge the elephant in the room, it just makes sense that the elephant can do no harm. This is not only false, but it can result in misdiagnosis, failure to gain needed care, and the permanent destruction of formerly loving relationships. Healthcare issues are difficult, complex, and divisive. Many families prefer not to discuss such topics because they tend to create conflict and strife. Unfortunately, delaying the inevitable increases the possibility that something will go wrong that could have been prevented and dramatically reduce the options and possibilities of a good outcome.

Rayna Neises: So much in that, really understanding how that needs to be addressed. All of these emotions are happening and we can’t pretend like they aren’t important to look at that. And I think grief has always been something we think of once we lose the person that we’re caring for. But that anticipatory grief that understanding that it’s actually in process from the very beginning. So the grieving process, why is that in so important for our listeners to understand?

Laura Beth DeHority: So from the moment that you received that diagnosis, a cycle of loss begins from that moment. Nothing will ever quite be the same. In addition to the loss that has already occurred, there is a loss unique to illness called anticipatory loss, which is the loss of hope due to the ramifications of that diagnosis. For the primary caregiver, especially one who cares, like I was saying and I think it’s very true for many who cares for multiple loved ones. This is a delayed loss that happens after caregiving roles have changed and where the person can look back over the time of caregiving and take inventory of accumulated loss from being in a caregiver role for an extended period of time.

So it’s important from the beginning for the healthy caregiver to begin an ongoing process of acknowledging loss and remain involved in an ongoing process in order to make space for positive emotions that can be lost in the everyday grind of loss and responsibility. And there are still, still many memories to be made if you’re available to see them.

For many, the stages of grief have been considered the way that we encounter the loss of a loved one but while the specific aspects of loss are not unique to caregiving. The stages are the same for the caregiver the denial stage is filled with similar questions about why this has happened, but an added question for the caregiver is more tied to their fitness to be a caregiver. Anger is tied to questions of why and the injustice of the situation and can be directed at social workers. Those people around the caregiver. Well-intentioned things that people say, and I mean by this like platitudes and unsolicited advice and undirected anger at the frustrating aspects of a day.

Bargaining is tied to the self-doubt, overwhelm and exhaustion as the caregiver reaches the threshold of what they can endure, bargaining becomes a hopeless plea for relief. Depression in the grieving process is not the same as clinical depression. It’s actually a necessary stage, which if process through will allow you to take inventory and to gain resilience. It is a movement toward acceptance, which is the realization that a new okay is attainable and the caregiver can look at things around them in the present and make realistic inventories of what is possible and where resources are available. These stages of grief come and go in waves, especially since the losses are ongoing, anticipatory, and delayed. Grieving is a gift from God. And if we remember that this is a process that throughout scripture honors God and strengthens our faith, we can gain a healthy and ongoing process for ultimate acceptance.

Rayna Neises: I love that point of it’s a gift. It’s not something that has to endure. We have to avoid it. It’s a gift to actually process through it because we can glean so much from it. when we do that, if we stay stuck, that’s when we become unhealthy in so many different ways. If you are faithful to do that. I agree. Then you find the memories. You find the blessing in what you’re doing as well. Not just the sadness, but you do have to experience both.

What are the components of a healthy grieving process? Because most people don’t think grieving is healthy. So let’s look at what makes it healthy.

Laura Beth DeHority: First and foremost, always spiritual time beyond that physical activity we need to move and that might be a short walk. It might mean, dancing in place, put on some praise and worship music. just something to, to move our bodies. We do need to find focused and productive time because there are many tasks to be done. And if we are overwhelmed sometimes our focused and productive time instead of being that becomes tied up in, a grieving process that is not productive. We need to have active playtime , that means that we actually set aside time for recreation. We need to have inactive downtime and we need to have connection with supportive people.

Rayna Neises: All of those things are so important. And I can hear the listeners thinking, how in the world can I do all of that? How do I put all that into my world when I have so many other things to do? But when you take them and break them down into small things like you did just take 10 minutes to go for a walk or take a few minutes to have that downtime plan it, figure out where to put it. It really is doable. And listeners, if you hear that list and you think, I can’t do all those things, taking the step to do one thing today, and once you’ve figured out how to put that into your schedule, take the step to add another one. You can do this. You can stay healthy through caregiving.

Laura Beth DeHority: I also tell people that this process can be a lot like a good sauce. You can connect spiritual time and physical activity and active playtime or inactive playtime and connection with supportive people. You can do all of these together. And they still count the same, so you don’t need as much time if you do them together.

Rayna Neises: Such a great point. I didn’t even think of it that way, but you’re right. If you call a friend and you go for a walk together, you’re accomplishing multiple things all in that one event. So what a great idea. Oh my gosh, you have just given us so much to think about. There’s so much great content in our time today.

Thank you so much, Laura Beth.

Laura Beth DeHority: Well, thank you for having me.

Rayna Neises: It has been a pleasure. And I know that our listeners have really enjoyed having an opportunity to hear your great pieces of wisdom. And listeners. I want you to know that this is not the only chance you have to hear from Laura Beth.  You can actually check out her educational videos at her website www.Comfortforcaregivers.com.

Remember A Season of Caring Podcast is created for the encouragement of family caregivers. If you have medical, financial, or legal questions, please consult your local professionals. And take heart in your season of caring!

Laura Beth DeHority: Thank you!

*Transcript is an actual recount of the live conversation

Resources

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p style=”text-align: center;”>Comfort for Caregivers – YouTube

Laura Beth DeHority

Laura Beth DeHority

Licensed Marriage and Family Therapist

 

Laura Beth is a therapist who specializes in working with caregivers and families who are touched by all forms of special needs. She works with individuals, couples, siblings, groups, and multi-generational families to provide support in areas of family roles and communication, stress reduction, anxiety, depression, grief, and addiction. Laura Beth has received advanced training and is pursuing certification in Brainspotting, a specialized and non-traditional treatment method for releasing trauma by working with a place in the body and in the brain where a trauma is held. For more information, go to www.brainspotting.pro.

She is a past Board Chair of Via Services, a private, independent non-profit organization dedicated to helping individuals with disabilities and special needs achieve greater self-sufficiency and lead richer lives. She also provides therapeutic support for SibsShops with Parents Helping Parents (PHP), facilitates a monthly parent support group at Shire House, and has served as a speaker at PHP, Help One Child, and other community and faith-based caregiver support groups.

 

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Meet Your Host

Rayna Neises, ACC

Your Host

An ICF Certified Coach, Pod-caster, Author & Speaker, offers encouragement, support and resources to those who are in a Season of Caring for Aging Parents.

Her passion is for those caring and their parents, that they might be seen, not forgotten & cared for, not neglected

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