On June 12th at noon, we went live with Sarah Harlock, Program Director for the Dent Integrative Center for Memory. We discussed Managing Difficult Caregiver Emotions, a topic that comes up regularly in support groups, classes, and general discussion.
Caring for someone with Alzheimer’s Disease or Dementia poses some special and unique challenges. As a result, caregivers very frequently experience higher levels of anxiety and stress. Reports have shown that 30% – 40% of family caregivers who are caring for someone with Alzheimer’s or Dementia are experiencing depression. Caregivers can also experience: frustration, fear, guilt and resentment.
The diagnosis aftermath
When someone receives that diagnosis, there is no question that is is very difficult. It is hard on the caregivers as well. Everyone’s life changes after that diagnosis. “I want people to recognize that it is not all doom and gloom,” Sarah says, “It can feel very heavy and negative. But, there are moments of joy and really important moments that are going to happen on this care-giving journey.”
New relationships, skills, and strengths
Through support groups or classes, there are new people you will meet during your journey. You also may form a new form of an existing relationship, such as sibling who are taking care of a loved one together, or partners who were independent, but start to depend on each other after the diagnosis. New skills will be developed throughout this process. You might be in control of banking for the first time, or have to take over cooking. Strengths will be developed from this.
“When you have the opportunity, if you can step back and just reflect on all the things you have done and learned and all the effort you have put in into care-giving, I hope you are as amazed by yourself as we, as professionals, are when we talk to you. The love and compassion that people put into care-giving is really amazing”, Sarah adds in.
The different emotions
Since these diseases are things that change over time, it is realistic to think that your emotions will also change over time. Be prepared that down the road, you may have more struggles or you could develop supports to help aid you in care-giving. Emotions are signals, and some of these signals mean that you need to make a change to alleviate difficulties. Two emotions come up frequently for care-giving: guilt and depression.
Guilt is complex, but there is a purpose for guilt. It brings our behavior in alignment with our moral compass.
Sarah explains this feeling: “Think of an example where you you’ve done something wrong. You’ve wronged somebody or hurt their feelings. Whether you meant to or not, if it caused pain to another person, you feel it. I don’t know about you, but I feel it in the pit of my stomach. I know I have done something that doesn’t fit with who I really am or the person that I should be. So, that feeling in the pit of my stomach is a signal that my behavior was not in alignment with my moral compass, and I need to pull my behavior back in line.”
What caregivers are often experiencing is “unjust guilt”. You are feeling guilty, but you didn’t cause this pain to this person and you did not wrong them. Sometimes we bring it on ourselves and sometimes, other people expect us to do more. Very often, it is our own expectations of ourselves that fuels that guilt.
Caregivers can also feel guilt after losing their cool and maybe yell back or snap at the person they are care-giving for. There is never any harm in asking for forgiveness. Again, this is a signal that you need to be taking some steps or making some changes. It is important to be comfortable with the fact that being is “perfect” caregiver may not be attainable. Your intentions are good but your time, resources and skills are limited. Try to get comfortable with that gap between perfection and reality, and stop beating yourself up for it.
Statistics say that 30% – 40% of care-givers of people with dementia will experience and suffer from depression. It is important that care-givers, or someone who supports a care-giver, monitors the emotional health of a care-giver.
“I do remember a phone call from a couple. She had just received the diagnosis and she she was devastated by this diagnosis. Her husband was saying ‘I’m literally calling you from our bed. We’re lying in bed, we can’t even get up and start our day.’ And that’s how pervasive this very heavy, heavy depressive feeling was for them”, says Sarah.
There is a significant portion of care-givers that actually qualify as clinically depressed and are suffering from the diagnostic criteria of major depression. This is not just the feeling of being blue, and it passes in a day. We are talking people experiencing pervasive and a consistently low mood.
Depression can come out in a lot of different ways besides sadness. It can come out in a short-temper, lack of focus, or inability to complete tasks. “The first thing that I recommend it that you talk to your primary care doctor. I think that is really important. If you don’t want to take medication, there are other things you can do.”
The importance of exercise and diet
There is all kinds of evidence out there that talks about the impact of exercise on mood. Start with something enjoyable. It could be a walk up and down your driveway. If you can’t leave your loved one and your loved one can’t join you, some movement chair exercises are very appropriate and effective.
Additionally, your diet can play a very large role in how you are feeling.
“If your diet is heavily processed if it is loaded with sugars you know it’s it’s definitely going to have an impact on your mood and your energy levels so where you can you want to make sure that you’re introducing fresh fruits and vegetables and that you are trying to make your diet as healthy as you can, because that also will impact energy levels and mood”, Sarah explains.
Finding joy in small moments
Finding moments of joy throughout your day can be really tough. It is a thing caregivers struggle with. There are many different things you can do, but a gratitude journal is a great way to start. Find one thing in your day that made you smile and feel good. It could be a nice sunset, something someone said that made you laugh, a great article you read, a funny video, or drinking a nice cup of coffee while it is still hot.
Once you start looking for those moments, you find them more often. These are not things that will improve your mood overnight, but gradually.
Sarah also mentions counseling: ” I would also encourage you to consider counseling. We have people that actually specialize in counseling very specific challenges of caregiving. Those kinds of opportunities exist as well.” Sometimes, it takes that objective person to get our thoughts out of our head and help us organize them. That objective person can help you recognize how you are feeling, what your goals are, and how you want to get there.
Not all techniques work for everyone. It is worth giving them a try. Ignoring any emotions you experience while caregiving will not help, so finding ways to manage them is incredibly important. “There has never been a need for you to be a perfect caregiver – only a caregiver that cares”, Sarah Harlock says.
View the entire presentation by clicking here.
The content of this post is intended for general educational and informational purposes only; it does not constitute medical advice. Readers should always consult with a licensed healthcare professional for diagnosis and treatment.