Dementia Caregiving- Loss Before Death

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.

The changes can highlight these losses. Caregivers are often struck by the sheer difference between their memories of their parent and the current reality. It is incredibly painful to watch a kind, loving person turn nasty during their sundowners and become vicious in their verbal attacks. It is differently painful to watch a strong, independent person become hesitant and withdrawn in their confusion.

The change in role can be difficult to navigate as a parent becomes dependent on their children for caregiving and decision making, and the caregiving child becomes tied down by their parent’s increasing dependence often after many years of living apart.

The issue of caregiving can break families apart as siblings either try to pass the buck to avoid the responsibility or each clamor to put their opinions in the ring and get the care decisions to go their way. As a caregiver, you may feel swamped by hearing from others what you “should” be doing from people who are not willing to lift a finger or send money to help.

All the while, you as the caregiver are navigating the day to day realities of providing care to someone with dementia. It’s not just an opinion to you, it’s your life and reality, and it can feel insulting for someone who isn’t in your situation to think they know better than you what you need to do.

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 such a pervasive myth that caregivers should be quietly dedicated to solely providing gentle care to a parent who calmly accepts our aid with gratitude. The reality is so different as you know.

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 totality of your life has been given over to caregiving, you may reach the end of your time at a high risk for suicide.

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.

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.