Being a dementia caregiver is like living in an emergency situation 24/7. That situation improves and worsens on a roller coaster of ups and downs as you care for your loved one while the overall trajectory of their health is one of declining brain function. There is a kind of shock I experienced after my mother died. I had lived so long in the emergency of her situation that my body had a hard time understanding it was really over once she transitioned out of this life. Cortisol and adrenaline had taken their toll and rebalancing was not immediate. I had been in an extremely intense engagement for five years as a caregiver for my mother. The majority of that care occurred over the last three years of her life. It would take some time for my body and brain to reset. The first year free from caregiving would include the passing of my mother’s birthday as well as the holidays and seasons of without. The first months would include my body not understanding I didn’t have to drive the round trip hour to the facility two to four days a week, including every Saturday. I didn’t have to rush through supper or skip supper until I got home or ask a friend to let the dogs out. I did have to wonder when my old self would return. When the dark circles under my eyes would find their way to finally fade. When sleep would be, once again, actually restorative….
Losing a loved one in any circumstance, especially a mother, is a shock to the system. But the “thousand natural shocks” that seem to never end during the dementia journey leave their mark on the brain and the body. We don’t see them, but we feel them and they can linger. Your loved one has been gone for two years, but when you walk into a room and smell their scent on a stranger you are filled with an almost overwhelming sadness; or you visit a friend in the hospital and the smell of antiseptics creates a sense of panic as your stomach tightens. This too, is part of the journey. It’s the journey that continues after your loved one dies. When my mother died I was greatly relieved and also in great grief. End stage dementia is something I wanted over for my mother. And then it was – over – and I was bereft to have lost my mother. Added to this were extenuating circumstances within the family that made a far worse tragedy out of the whole of my mother’s final few years. My lawyer told me such things in families do happen and in fact they “happen all the time.” For those who are also dealing with complicated family situations the death of their loved one may be merely the beginning of a slough of new problems regarding estate settlement. For copacetic situations involving adult children of a parent who transitioned out of dementia, there may also be another year of “death work” before the estate is finally settled and siblings can begin to reshape their daily living toward the more normal life they once knew. It is likely this will be easier for those who were not directly involved in dementia caregiving. For a family unit that includes only a single child, the burden is very heavy, indeed.
For dementia caregivers, I don't believe there is ever complete "moving on" from having traveled the dementia journey with a loved one. There is moving with. There is a myth of closure while post-traumatic caregiving is real for many dementia caregivers. I could never message that traveling the dementia journey with a loved one is something a caregiver simply overcomes. Caregivers need time and space to know they don't automatically "heal." Having said that, the hope in healing that caregivers have is knowing they will slowly move back into their lives as experienced pre-dementia, even knowing the dementia journey is a definitive one.
My experience is that my life was unalterably changed by dementia. I am a different person, though I am very much the same. Still, I can never be again who I was before my mother’s dementia. I cannot NOT be the daughter who helped her mother journey through one of the worst conditions imaginable for her and myself as her adult child caregiver. Still there was life before dementia and there is life after dementia. Caregivers will need to allow themselves the patience of knowing what they have just gone through is extreme and unlike any other medical condition. The journey doesn't exactly end with the death of their loved one—and this may be relationship-specific—but in time dementia caregivers will begin to feel better.
The worst message is that there is an identifiable timeline for recovery. Recovery will happen, in time, but so might triggers that may cause minor setbacks. It is helpful to be mindful of this. Please support your family’s caregiver once caregiving ends. If you were the caregiver, please know it is not unusual to receive psychotherapy for a time as part of the healing process. Dementia caregivers often experience complicated grief, and this must be honored. Everyone is different, as are a caregiver's particular circumstances. The arc of the journey is a continuum through which the dementia caregiver slowly rebalances after a loved one's death. Caregivers must allow for themselves, create space for, the unknown amount of time they will need for this rebalancing they so richly deserve. With time and mindfulness, it will happen.
I have been truly glad to be a part of your path as a caregiver who may be just starting out or may be nearing the end of their caregiving. I am glad to continue in a more minor role as a substitute co-facilitator of my local support group for dementia caregivers. This will likely be my final post for Dementia Notes. I have completed a memoir detailing my experience as a caregiver and what it means to navigate the legal and medical systems while engaged in dementia caregiving. I will now be turning my attention toward publication and associated endeavors. I do hope to also compile these Notes into a companion booklet that can be used with or without my memoir. I will post updates about these processes which will undoubtedly take some time.
I will say once again that dementia caregiving is not for everyone, and I will remind you that you are one of the heroes who helped your loved one or are in the process of helping your loved one get through their journey. I, like so many of us involved as facilitators in dementia support groups, recognize your direct engagement is a testament to your constitution; your compassion and dedication to being present for your loved one under truly dire circumstances are admirable.
Never underestimate your value and contribution. And always remember: You are not alone.
Wishing you all the very best,
Leigh Herrick