Grieving Before Death: Alzheimer's or Terminal Illness Grief

Updated
Follow
Share

Nearly everyone involved in caring for an ill or aging loved one is experiencing some degree of grief. However, we don’t usually identify the complex emotions we’re experiencing as such. When you have a parent or spouse who used to be strong and capable but begins to ask for a little assistance, it’s no big deal, right? You’re happy to help.

But deep down, there’s a knot in our hearts. We’re grieving various kinds of loss, including the loss of function that comes with advancing age or a chronic medical condition. Generally, these changes are subtle and the grief surrounding them is sneaky.

My Experience with Grieving Before Death

I remember watching my parents age in the normal fashion. I’d occasionally look at them and be startled by the realization that they were getting older, but that was all I acknowledged. I never consciously dwelled on the fact that they would continue to decline and eventually I would lose them. I didn’t want to. These things did, however, linger in the very back of my mind.

Then one day my dad underwent brain surgery to correct an old injury he sustained in World War II. It was made clear to us that without this operation, he would eventually suffer from severe confusion. Unfortunately, though, the surgery was unsuccessful. Instead of preventing this fate, he came out of the operating room with full-blown dementia. Our family was suddenly experiencing one of those tragic things that only ever happens to “other people.”

There was no time to fully contemplate the far-reaching implications of Dad’s abrupt change in health. Hard decisions had to be made and there was so much to be done that we couldn’t have anticipated. Where should he live now? What kind of immediate care does he need and how will his needs change down the road? What is best for Dad? What is best for Mom?

I became the primary caregiver, immersing myself in the task of making Dad’s existence worthwhile. Whatever he imagined was happening, I did my best to make it so. When he was waiting for his medical degree to arrive in the mail, I made sure one did. (My homemade version looked pretty good hanging on the wall of his room at the nursing home, too.) I became his office manager and his music director. Whatever he needed, I did everything humanly possible to provide it or become it.

At that time, I had several other elders to care for as well as a son with chronic health problems. I didn’t have the time or energy to think of myself very often. Now, I look back and see that I didn’t do myself any favors. If I had a good friend going through what I experienced, I would offer them all the help I could. I would recognize that they were grieving the loss of the father they’d known their whole life. I would press them to do some things to take care of themselves. I would lend a helping hand. I would suggest counseling or a caregiver support group. But back then, I did not ever think about these things for myself. When we are in the throes of caregiving, we often stuff our feelings deep down and focus on getting through each day.

It wasn’t until Dad died about a decade later that I recognized what I had been going through. People expressed their sympathies by saying things like, “I’m so sorry for your loss.” But at times, I wanted to reply with my honest yet ungracious thoughts. I was tempted to say, “I’m not sorry! My real dad died ten years ago. He’s been living with dementia for a decade. He finally was able to die peacefully in my arms and now the suffering is over.” I knew people meant well, so I just bit my tongue.

Gradually, I realized that I had been grieving that whole decade. I did myself a disservice by failing to recognize that I had the needs of someone who was in mourning. Like most caregivers, I should have cut myself some slack. I was not as gentle with myself as I would have been with a grieving friend or family member.

Recognizing Anticipatory Grief

I now speak to groups of family caregivers and often remind them that they are likely experiencing anticipatory grief, whether they are caring for loved ones with a terminal illness like cancer, or a chronic, progressive condition like lung disease, Parkinson’s disease or dementia. This long, slow pain weighs on our hearts as months and even years of caregiving pass by and we watch our loved ones decline bit by bit. We do all we can to support them and help maintain their quality of life, but we can’t prevent the inevitable. As rewarding as this role can be, it is also frequently very frustrating. It’s all a part of the long goodbye.

Anticipatory grief is different from conventional grief because it is defined by the anticipation of a loved one’s death. With grief before death, we contemplate many of the same questions that usually arise just after a person has passed away: What will we do without them? How will my life change? How will we keep on living? The difference is that we have not experienced the actual loss. We are not yet capable of going through the difficult emotions that accompany death, healing and rebuilding our life without our care receiver. We are essentially stuck in a state of mourning. Whether we are actively contemplating these thoughts or they are merely lurking just below the surface, the anxiety surrounding this major life change is intense, persistent and long-lived.


Browse Our Free Senior Care Guides

To make matters worse, we are mourning while our loved ones are still here. We are upset at the eventuality of their death, yet we are still responsible for their care and privy to every minor change in their condition. Some caregivers are better at coping with the constant reminders that their care recipients are declining. However, a tinge of caregiver guilt is often present for many. Grieving is difficult enough but mourning while someone is still alive just feels… wrong. The truth is that this sorrow only highlights how deeply we feel about those in our care.

Anticipatory grief doesn’t get the coverage that it warrants. Family caregivers are often confused or embarrassed by these ill-timed feelings, but if they aren’t addressed, they can wreak havoc on our physical and mental health. They creep up on us as small losses mount over time. For care recipients, these include the loss of independence and functional abilities. For us, it’s the loss of time for ourselves, time for our jobs and even time for our children. It’s the loss of the relationships we used to have with the people we’re caring for.

This last aspect of grief is especially true for dementia caregivers. Those caring for seniors with Alzheimer’s disease and other forms of dementia bear witness to a prolonged mental and physical decline (and cycle of grief) that can last for more than a decade. In many cases, an elder’s independence and functional abilities disappear along with their memories and personality, leaving someone behind who is almost unrecognizable.

Seeking Help with Anticipatory Grief

Anticipatory grief is an insidious feeling that is often accompanied by caregiver depression and even caregiver burnout. While this kind of grief is far less studied than conventional grief, research suggests that validation of grief feelings, increased coping and self-care, anticipation of future losses, and reframing roles can be useful therapeutic interventions. Working with a mental health professional and attending caregiver support groups can help immensely with grief work, anxiety, depression and burnout.

The well of grief is deep. We need to be self-aware and realistic about our emotions so they do not drown us before we even realize how potent they really are. As much as we strive to be compassionate and attentive to others, we must be reminded that we caregivers are suffering, too. The stress and anxiety that accompany prolonged grief can be deadly. Research has shown that those experiencing caregiver strain have a 63 percent higher mortality risk than their non-caregiving counterparts.

Yes, the grief we experience just before and after a death is devastating. But we must spread awareness of the subtle ache that we feel as we watch our loved ones slowly fade away so that fellow caregivers can learn to recognize and acknowledge it in a timely manner. We need to be a friend to ourselves and get help before we become a statistic. Not only will we gain the tools we need to continue on in our role without jeopardizing our own wellbeing, but we will also reduce the likelihood that we will experience complicated grief after our loved ones pass on.

Sources: Caregiver anticipatory grief: phenomenology, assessment and clinical interventions. (https://www.ncbi.nlm.nih.gov/pubmed/29206700); Caregiving as a Risk Factor for Mortality: The Caregiver Health Effects Study (https://jamanetwork.com/journals/jama/fullarticle/192209)

Ask a Question
Subscribe to
Our Newsletter