Caregiver stress is real. Caregivers often don’t even realize that the caregiving is the source of their stress. Often the disease begins slowly. And seems to progress unevenly. Simple forgetting, missed appointments, losing track of time, or your wallet, keys etc. Isn’t that part of normal aging? When do you seek help for your stress?
What Does Caregiver Stress Look Like?
As stress progresses slowly, the incremental increase in time or worry devoted to caregiving activities may not seem like a big deal. However, caregivers soon realize that they are overwhelmed. They don’t know where to go to get answers. Their lives have slowly revolved around caregiving, leaving little time or space for other activities they enjoyed. They feel isolated and alone. Their friends stop asking them to join activities because they never attend. How did it get to this?
We’ve asked countless caregivers just like you, and they all report these things. Many caregivers report that they get caught up in the day to day and that it’s difficult to maintain the bigger perspective. Many report that the behaviours of the person living with dementia (PLWD) are so consuming that their days are spent managing them. For example, the PLWD may become so stubborn, or so fixated on a particular item or activity, that the whole day revolves around that one item. The PLWD repeats or prolongs an action. The caregiver is then stuck in a loop of frustration and exhaustion of trying to divert their attention. Frustration levels continually increase, permeating tension and negativity in every interaction.
What is the impact of caregiver stress?
What then? We hear caregivers say that they quit. They are exasperated, don’t know a way out, and all of the things they’ve tried before are not working. That either means that they don’t fight the behaviours any longer, and let the PLWD repeatedly do the action. Sometimes this is fixating on an object, person, story or experience, reliving it repeatedly. There is some comfort to the PLWD to replay these experiences.
Sometimes it means not fighting the PLWD to bathe regularly, or exercise regularly or eat properly, because the fight is just not worth it. As the PLWD’s mind changes, they crave comfort, routine and to contribute in ways that made them unique. As they lose their known identity and become something that they may not have chosen, they are looking for ways to continue to identify as they used to. They are seeking independence over their actions and thoughts. This might look very differently from the historical person the caregiver is used to dealing with (fit, well-dressed etc.). It might be an exaggerated reflection of a personality trait that they’ve always had (stubbornness, judgment etc.). It can feel extremely consuming to manage these seemingly odd behaviours.
If you are on the outside of this circle looking in, what can you do? How can you support the primary caregiver, who may slowly and surely be reaching their limit? What options do they have? How do you broach the subject? We’re working on solutions to help caregivers with these challenges, to help them cope. Our Tusk platform allows caregivers to self-report their feeling of wellness in real time, and connect with a care navigator to help them find tips and solutions for their circumstance. Many caregivers report dealing with behaviours as one of their most difficult challenges, and welcome tips and tricks to help them deal with the day to day. Tusk also helps caregivers understand what the symptoms are at the stage of the disease.