A diagnosis of dementia in a parent can feel like the beginning of the end. Many caregivers describe the day of diagnosis as the day that they truly lost their parent. It’s an isolating feeling, being with your parent while actively missing who they were.
Dementia Caregiving Is Painful
The changes in your parent highlight these losses. Caregivers are often struck by the difference between their memories and the current reality. It is incredibly painful to watch a kind, loving person turn nasty during their sundowners or become vicious in their verbal attacks. It is differently painful to watch a strong, independent person become hesitant and withdrawn in their confusion.
Navigating Role Changes
The change in role can be difficult to navigate. As a parent becomes dependent on their children for caregiving and decision making, the caregiving child becomes tied down. The parent often wants to feel in charge. They aren’t ready to sit back and let their children make decisions yet.
Dementia Caregiving Stress
The issue of caregiving can break families apart. Siblings either try to pass the buck to avoid the responsibility or clamor make their opinions heard. As a caregiver, you may feel swamped by hearing from them what you “should” be doing when they are not willing to take on the work.
All the while, you as the caregiver are navigating the day to day realities of providing care to someone with dementia. It’s not a theoretical debate, it’s your life and reality. It can feel insulting for someone who isn’t in your situation to think they know better than you what you need to do.
Care For Yourself Too
At the same time, you are not just a caregiver. You are a person worth time off, breaks from caregiving, and your own separate life from your parent. There is a toxic idea that caregivers should be quietly dedicated to their parent. This comes with the equally toxic expectation that parents will be grateful and kind. This combination is harmful to caregivers who are doing their best in a difficult reality.
Caregiving can last for years, and too many caregivers come to the end of their parent’s life resentful, burned out, lonely, and isolated. If the past years of your life has been given over to caregiving, you may reach the end of your caregiving time at a high risk for suicide.
Your Needs Are Important
It is vitally important that as a caregiver you stay connected to your community whether that means staying employed, keeping up with your needs, maintaining your hobbies, and nurturing your relationships. You are important in so many ways, not only for what you are doing for your parent, but in terms of your own intrinsic worth.
Dementia derails the entire family, but mostly the caregiving person. You are essentially losing your parent as you see the person they were giving way to the progression of the disease. You are at risk of losing yourself as well, as you are asked to do more and more for your parent. Family disagreement over the care process fuels the sense that things are breaking apart.
Therapy Can Be Self Care
Caregiver support is so necessary. As a caregiver, it is important that you prioritize yourself through the process. Therapy is one possibility for support, and there are also so many groups available for you to get to meet with peers going through the same thing.
Grief therapy for caregivers is different because you’ve been through a big loss in your parent’s diagnosis, but they haven’t died yet. You may have complicated feelings toward them. Learn more about grief counseling here to see how I can help.