Most people don’t have to grieve the loss of a loved one until after that person has passed away. But family caregivers who look after someone with a degenerative disease like Alzheimer’s, ALS, or Parkinson’s, may face grief in a very different, and sometimes far more painful way.
A psychologist will tell you under normal conditions, people dealing with grief will progress through a number of stages: Denial, anger, bargaining, depression, and finally acceptance. We generally get hung up on one or more along the way until we can emotionally work through them, either on our own or with professional help.
I first learned the science behind grief in high school and college psychology classes, but not like I would understand it later in life. Up to that point, I had experienced grief like most people — by dealing with the death of a family member, the loss of a job, or whatever life tossed my way. But later, while caring for my mother as she declined from the ravages of Alzheimer’s disease, I was struck with how differently grief manifests itself for someone whose loved one is slowly being ripped away.
In my experience what makes grief different for a caregiver is how the grieving process seems to reset as a disease like Parkinson’s progresses through various stages. As your loved one suffers physical and cognitive decline, your understanding of their status has to be adjusted accordingly.
For example, early on, my father could no longer bathe himself and, not long after, even taking a drink from a cup was a major challenge. So you say to yourself, “OK, this is how it’s going to be now,” once you’ve accepted some level of decline. You grieve the loss of the previous status, knowing things are getting worse.
Five minutes later, you notice something else that’s gone downhill or altered in some way. There is no set rate for when to expect these changes in your loved one’s health and they can come on rapidly. That means you barely get the chance to wrap your head and emotions around each state of change before you’re dealing with three more simultaneously.
Knowing there is no happy ending at the end of this story, you face constant adjustment and acceptance which are exhausting both mentally and emotionally. All of this turmoil adds up to something called, “anticipatory grief,” which is exactly what it sounds like; you’re mourning the person as the disease progresses, anticipating their eventual death.
None of this is generally a conscious thought process. After my mother’s passing, I understood it better, and that, at least, helped me cope with my father’s decline several years later. But until I realized all of this, I was just angry all the time. I was frustrated at why dad couldn’t remember how to sit down in the chair properly, or just use a spoon, but 10 minutes earlier it hadn’t been a problem. Things literally changed on the fly.
In my case, the difference between caring for Mom vs. Dad is that my mother’s Alzheimer’s disease removed any expectation in my mind of her being cognitively aware enough to help herself. She had no clue what was going on around her, so it was slightly easier to adjust because she didn’t push back. Dad’s mental state was usually pretty good, so he pushed back — a lot. And I kind of got it; it’s tough to spend your life being the one taking care of everyone else and suddenly you feel like a helpless burden.
It really bothered my dad to need help for anything, like standing up from a chair or that we had to restrict things like coffee because the caffeine aggravated his symptoms. As his condition changed, we tried to counter each new phase with alternative ways to keep him comfortable and safe while dealing with altered symptoms.
I don’t know how to tell you to deal with anticipatory grief. Everyone copes differently. Being aware of it can help a bit. If you’re caring for someone who is slipping away, spend what time you can with them. Be there with them, be present, and be kind to them and especially to yourself.
Gery Deer is a Greene County resident and columnist. He can be reached at www.gldcommunications.com.