If you’re a family caregiver, I honor you, and thank you for your work to support a person whose life would be very different if they did not have you on their side.
2 days away from February 23rd, the day I lost my husband to dementia in 2019. The proximity of this date to National Caregiver Day has resulted in my thinking a lot about the challenges I faced managing the emotions of my husband, our kids, and myself.
We recently published this video on our Caregiver Education channel. I welcome you to watch, or if it’s easier I’ve posted the transcript below.
When your loved one was diagnosed with dementia, what emotions did you feel? Anxiety, perhaps? Grief? Maybe you felt anger, fear or despair. You might even have felt relief at finally understanding what was happening. These are all valid emotional responses to a dementia diagnosis. As caregivers, it’s important for us to remember that these same emotions are experienced by the person we support. But because they are living with a changing brain, they might need us to help them process these feelings.
For the person with dementia, there are added layers of emotional complexity. Frustration because things that were once easy have become hard. Shame, brought on by feelings of inadequacy and the stigma that comes with a diagnosis. Confusion and anger resulting from lost skills and abilities.
Making things even more difficult is the fact that brain changes from dementia can result in a lack of impulse control, causing the person to respond to their emotions in ways that are both difficult for them and the person supporting them. The changing brain can also reduce a person’s ability to empathize with others, making them seem uncaring, or disinterested in the impacts they are having on those around them.
Let’s talk about the emotional landscape of dementia and how we can support both the person we’re caring for, and ourselves.
Mom watched the news about a house fire but now believes the fire is a threat in her own home. Arguing that there’s nothing to worry about because the fire is far away is not likely to help, because it conflicts with her reality. Instead, let her know that you understand her concern and assure her that you’ve got this and you’re going to keep her safe. You might need to inspect the home. Show her that the smoke alarms are working, and have not been triggered. Thank her for sharing her worries with you. And do your best to avoid possible triggers in the future.
Empathy is about understanding the perspective and emotion of the person you care for. It’s about accepting them for who they are and staying out of judgement. Consider times when you have felt anxious, scared, angry. What do those emotions feel like in your body? What would you want someone to do when you feel that way? Would you want them to take your hands, reassure you, and breathe with you? Would you want them to distract you with music, visual stimulation, an alternative activity? Would you just want to be listened to? Empathy takes practice, and it’s one of our most valuable tools as a caregiver. Sometimes what you think would help you most, doesn’t help them at all. So we need to remain flexible and curious.
It’s up to the person with the healthy brain to make changes.
It’s vital that we as caregivers recognize that the person we support really is doing the best they can. When they seem overly reactive to a situation, our role is to do our best to stay calm. Elevating our own emotions will not help. Instead, start by listening deeply. Listening is more than just hearing their words. Pay attention to the emotion behind the words - their tone, their body language, and to what happened just before they became distraught.
Language matters.
Rather than telling them to stop, or calm down, pause and take a deep breath. Then, reflect and validate their emotions. “You’re really angry right now because your purse is missing. I don’t blame you. I hate that for you. I’m going to help you find it.”
If you or the person you support are experiencing disruptive, unmanageable emotions, talk to your healthcare provider who might be able to suggest medications or other treatments that might bring ease.
Be kind to yourself. Supporting a person who doesn’t necessarily notice how hard you work or the impact that their physical and emotional needs have on you can be exhausting. It is not a sign of weakness to reach out for help if you feel like your own emotional needs are making you less able to handle all that is on your shoulders. It is, instead, an indication that you are paying attention, and doing the best you can.
