3 steps to help you manage guilt and sadness as a caregiver

Welcome back, Careblazer.

I was recently invited to talk at a support group. It was a virtual support group and apparently they had watched some of my videos so the leader reached out and asked if I would be willing to join them for one of their sessions.  It was an honor getting to meet these amazing Careblazers. Today, I want to share one of the questions a Careblazer asked. He was a Careblazer for his wife who was in a care facility and he shared that he feels so much grief and guilt when he was out living his life, knowing his wife is in the facility. He shared that he sometimes will find himself enjoying a moment with his daughter or grandkids and then he’ll remember how his wife isn’t there and can’t enjoy that same moment. This brings on a wave of sadness, grief, and guilt for him in these moments. His question was something like: "how do you experience joy in life when you know your loved one with dementia can’t also enjoy those moments?" Talk about pulling on my heartstrings. 

If you would rather watch my video on this topic, click here

Can you relate to this? Whether your loved one is in a care facility or even at home while you might have the opportunity to leave the home, do you do something nice for yourself? 

I want to share some of my thoughts about and what you can do to work through these moments. These are some of the thoughts I shared with him that day and I hope wherever her is, he can see the video or read this post as a reminder of those thoughts. 

Before I get started, I just want to welcome any new readers. My name is Dr. Natali- I’m a board-certified geropsychologist and this is the place where we talk about everything about dementia. If you don't have one already, I put together a very special Careblazer survival guide filled with some of my best strategies for dealing with stress, guilt, and difficult behaviors. You can download that for free here.

Here are 3 steps I hope can help you the next time you find yourself overwhelmed with emotion when you notice you are enjoying something pleasant that your loved one cannot participate in/enjoy themselves. 

#1. Recognize your emotions as normal.

Sometimes, when we experience guilt, grief, or sadness, we interpret that as an indication that something has gone wrong. Your mind may want to think that because you are having those feelings, being able to enjoy your grandkids, being able to experience joy once in a while is wrong since your loved one can’t. As a human being, you are going to experience a wide variety of emotions. And as a Careblazer, feelings of guilt, grief, or sadness are certainly some of the ones you will experience. Recognize those emotions as normal and truly an indication of how much you love and miss your loved one with dementia. It’s a sign of how you wish your loved one with dementia could also enjoy this moment with you. 

#2. Keep enjoying those moments.

If I thought suffering through all your moments and denying yourself any type of pleasure of joy you get to experience would help your loved one, then perhaps we can talk about how to keep that a part of your life. But catching yourself enjoying a moment, noticing the guilt, and then spending the rest of your time in that emotion while missing out on the activity or moment in front of you doesn't help at all. This is something really important that I really want you to hear, Careblazer. Whether you enjoy an activity or moment or whether you go through that moment with sadness in guilt, in the end, it does not change anything for your loved one with dementia. No amount of your suffering will change the reality that your loved one isn’t there with you in the moment, or that your loved one can’t enjoy that moment with you. Let that sink in.

This reminds me of a comment a Careblazer left under one of my Instagram posts recently. She shared that she went for an hour walk recently and the whole time she just felt guilty while she was walking before returning home to care for her mother. Remember, it’s natural to have those feelings, but don’t let that take away from all of your joy or pleasure in the moment. That one hour of guilt, while she was out walking, didn’t help her mother in any way. It didn’t change the fact that her mom was still at home. So remember that, and in step 3, let’s talk about what you can do when this happens. 

#3 Bring yourself back into the present moment.

Because it’s normal that you may start to feel guilt or sadness when you catch yourself doing something nice for yourself, let’s talk about what you can do to help bring yourself back into the present moment. Because remember, there’s nothing your guilt will do to help your loved one so let’s try to get you whatever moments of joy or pleasure you can get. In this step, I want to encourage you to practice something called mindfulness.

Here’s how it works.

You’re out doing something, maybe a walk, maybe enjoying times with the grandkids. And then all of sudden you think about your loved one with dementia who can’t be there enjoying that same moment. This is when the heavy emotions sink in.

1- acknowledge the emotion, send a little love thought to your loved one (perhaps a little thought that I wish you could be here, or I miss you).

2- recognize that what you are doing doesn't actually have any impact on your loved one with dementia in that moment.

3- practice mindfulness to help you continue to enjoy the moment.

Mindfulness is engaging as many of your senses as possible to stay in the moment rather than thinking of the past or present.

So you would begin to notice the sounds around you - what is in your heart. You would begin to feel what’s around you - can you feel the ground beneath your feet? Maybe the chair you are sitting on? Are you eating, can you feel the fork in your hand. If you are eating, you can engage the senses. Notice any smells. Notice all the colors and everything you see. This practice of mindfulness or staying in the present moments helps you fully engage in the moment you are in rather than thinking of the past or future which you have zero control. I put together some mindfulness exercises for you so you can get an idea of how it would look for regular activities around your house like when you wash dishes or do laundry. But you can expand on the idea and apply it to any situation you are in, especially if you notice your mind is wanting to pull you out of whatever moment you are in. 

Careeblazer, I know for many of you moments of joy,  or respite, or pleasure can seem few and far between. Don’t miss out on some of these rare opportunities because your loved one can’t also be there with you. I would also invite you to watch another video I have on how comparing the past to the present can also be really difficult and bring up guilt. You can watch that video here.

I know this is hard.  I hope this helped you in some way.  I’ll be back next week with another one. And if you want to work with me further on lowering your stress and working through difficult emotions, you can sign up on my waitlist to join me inside the care course the next time it’s offered. I know that many of you missed the deadline, I’ll be sure to alert those on this list as soon as it’s open again. Sign up here. 

If you would like to try my mindfulness audio exercise, click here

Take care, Careblazer.