by Kambria Kennedy-Dominguez

I've learned through my last few years as a counselor that grief is not what I once thought it was. I used to think that it only began after a loss had occurred, and generally that loss had to be severe, like the death of a loved one or the ending of a marriage. 

But then I started working in hospice, and visiting family members of those who were dying from terminal illnesses. Sometimes these family members had been caring for their loved ones in declining health for up to 10 yeas...or longer. And I realized then that the grief process starts much earlier than I'd imagined. The loss is not always a dramatic final ending, rather sometimes it's the small losses along the way that are the more critical experiences to mental health.

 In this article, I will focus on losses that occur gradually, and the experience of grief as a cumulative process. However, of course, there are times when losses occur suddenly and unexpectedly. Such as losing a loved one in an accident or to an acute health condition. My goal is not to minimize or dismiss those very real and devastating sudden experiences of grief. Rather my goal is to help us bring light to how grief operates in other, less understood, ways. Here are a few examples. None of these stories represent one person I have seen. Rather they are bits and pieces of stories that illustrate how grief can operate in unexpected ways.

I was working once with a wife who had been caring for her husband with Alzheimer's for about 9 years, when he finally stopped remembering the vintage cars that had been one of the joys of his life. This particular escalation of his memory loss was one of the hardest parts of the journey for her. The cars had meant the world to him. He had spent countless hours looking at them, naming them, talking to friends about them, and sharing his passion for them. She asked herself, "Who was he if he didn't remember the cars? Was he still her husband, and why was it harder to relate to him now, to see him the same way?"

​Another time, I was working with a husband whose wife had a form of dementia that in some ways mimics schizophrenia with visual hallucinations and delusions. He struggled most at times that surprised me. It wasn't when his wife saw things that weren't there or rambled on about ideas that didn't make sense to him. The difficulty came when his wife, who had always been diligent in decorating their home in meticulous detail, no longer recognized important objects from their family history. This change represented a tremendous loss for him because her remembrance of care for family heirlooms was fundamental to how he defined her. 

Another time, a young woman came to counseling to work on issues in her marriage that were resulting in her drinking alcohol to excess at times. Over the course of our sessions she also shared that she had learned that her mother had been diagnosed with an illness that was degenerative and incurable. She was seeing a decline in her mom's ability to use words, to navigate around her house safely without falling, and to learn and retain new information. We discovered that her drinking problem had arisen just at the time that her mom was diagnosed with this illness. For her, the knowledge  of the incurable diagnosis was the most difficult loss. She hadn't realized that she was coping with the loss by using alcohol, and that in turn was seriously impacting her marriage.

Discovering losses and recognizing grief are common aspects of work done in counseling sessions. Normalizing and educating ourselves about grief can have a tremendous impact on healing. The five stages of grief are denial, anger, bargaining, depression, and acceptance. They do not always occur in this order, and do not represent finite periods of time or intensity. And they do not always begin after a death has occurred. In the case of illnesses and changes in loved ones that are more gradual, the grief process begins early. And knowing that grief starts early can help us better name our emotional experience and help us be more compassionate with ourselves through moments of suffering. 

A heavy topic today, but an important one.

For those with terminal illnesses and their families, or those that have lost loved ones suddenly or at a young age, talking about death is not easy. Saying the words, "death... dying... died... will die" is hard. Death is final. We miss our loved ones when they are gone. We worry that we may die before we do all the earthly things we were meant to.

Because the language of death is hard to use, people will use other words.They may say "pass away, moved on from this life, or passed over" to describe death. These softer versions create the illusion of softening the blow and to ease social discomfort around the topic. Sometimes families and friends simply avoid the subject completely for fear of saying the wrong thing, upsetting one another, or because they can't find any words to use. 

So why is death so hard to talk about? We are aware that it's inevitable, yet for many of us, it's easier to avoid the subject. In the documentary and book titled Being Mortal, physician Atul Gawande struggles with the death conversation with terminal patients. He states "death and aging are the things we can't fix." He realizes that doctors sometimes provide false hope to patients, transferring their own desire to fix things to their treatment protocols, even when deep down they know treatment is likely not to work. What is it about death that will cause even a doctor to deny reality?

Hospice professionals know that patients and families do better when they have a specific plan in place regarding directives for lifesaving treatments, living wills, last wishes, and priorities for how the last days and months of life are spent. Yet, these arrangements cannot be made if no one is talking about them. And even for hospice professionals, it's difficult to broach the death subject with patients and families who aren't yet ready to go there. Sometimes it seems like not facing reality is the compassionate thing to do. But is it? 

Complex emotions accompany death. Counselors are well positioned to help people explore these feelings, ease the inherent discomfort of talking about them, and hopefully provide a safe place to make plans that make the dying process easier. Here are a few of the feelings we may have about death.

1. We feel afraid because death is scary. It's the ultimate end, and is potentially painful. The dying person must consider whether death will come slowly or quickly. They wonder if there will be physical pain in dying, and how they'll manage it. They wonder how their loved ones will endure the emotional pain of their death. And the dying person has their own emotional pain. 

2. We feel responsible for comforting others. Even if we are grieving, we still want everyone around us to be ok, and to not worry. We may skim over details, minimize the negative, and emphasize the positive in an effort to save everyone's feelings.

3. We feel sad at the thought of losing a loved one or about our own lives ending. With that, regret, guilt, or remorse may surface as we consider the journey we've taken in life. We consider what we did well and what we didn't. We consider our mistakes, and maybe who we hurt along the way. We ask whether there is meaning in any of those experiences. We use our spiritual beliefs to answer some of these questions and make peace (or not) with ourselves. We use the same beliefs to make peace (or not) with our dying loved ones who may have wronged us. 

Each of these feelings can be difficult to process. 

Counselors, social workers, pastors, and palliative care health professionals are great resources to use when faced with struggles of talking about death and dying. When individuals become more comfortable talking about death, they give those around them permission to be comfortable with it also. Feelings and attitudes are contagious, and can create a ripple effect of healthy coping. 

Aging can be a difficult process. Between aches and pains, forgetfulness, diminished independence, and career and retirement worries, getting older can be complicated and scary. Roles are often reversed between parents and children, as elders become less able to take care of themselves and adult children take on increasing responsibility as caregivers. Sometimes, though not always, dementia and other cognitive diseases accompany the aging process and the end of life. Through working in hospice with families managing these illnesses with their loved ones at the end of life, I've compiled some helpful information. Let's go over the basics.

First, according to Alzheimer's Association at Alz.org, dementia and related disease affects more than 5 million people in the US, and disproportionately affects women over men. There are many different types types of diseases that involve dementia and cognitive decline, and lots of medical terminology describing the different symptoms you may see. 

Dementia is a general term referring to a decline in mental ability accompanied by memory loss, difficulty communicating, and disorientation to people, places, or things that were once familiar. The distinct types of dementia result from the different areas of the brain that are affected. 

Alzheimer's disease is a form of dementia caused by abnormal proteins around brain cells, beginning in the hippocampus which is responsible for memory. The disease has distinct stages with a progressive decline in mental functioning, with the hallmark first symptoms being the inability to learn and retain new information. Someone in the initial stages of Alzheimer's may experience mild forgetfulness or difficulty choosing the right word in conversation. Over time, organizing and managing daily tasks becomes harder, remembering things that happened a short or long time is harder, and communication with spoken and written words becomes more difficult. Difficulty using language is called dysphasia or aphasia. 

The middle stages of Alzheimer's disease can involve wandering behavior and increased disorientation. The individual may have lapses in memory of details of their lives, like their name or address. They may need to be reminded how to dress properly for the weather, or prompted to initiate daily tasks like eating, bathing, or going to appointments. They may become unable to cook independently, leaving pots over lit burners, or leaving the gas on the stove. Risk of becoming lost and being unable to return home increases during this stage.

In the final stages, the loved one loses recognition of family members and caregivers by name, though they may recognize familiar vs. unfamiliar faces and have flashes of intact memory. Their personality may change dramatically. They may become verbally and physically aggressive. They may become incontinent, needing assistance with toileting and feeding. The ability to use and control muscles is diminished and they are unable to move about on their own. They may have difficulty swallowing, and their immune system is compromised. If you want to learn more about the signs, symptoms, and stages, click here for a 10 sign of Alzheimer's checklist. I will describe other forms of dementia in later posts, including vascular dementia and dementia with lewy bodies.  You can learn more now about these conditions by visiting the Alzheimer's Association Dementia page here. 

Now let's turn to caregiver grief. Grief is an important concern for family members witnessing the mental decline of a loved one, especially for those responsible for helping with day to day tasks.  Depending on the severity of the illness, family members may choose to care for the patient at home or move them to an assisted living or nursing facility. There are many different levels of retirement and nursing facilities. Let's go over some of the terms used to describe them.

Many retirement communities offer services on a continuum based on need. Independent living is at the least restrictive end of the continuum. The patient has their own apartment within a retirement community, is responsible for their own meals and daily schedules, but have access to amenities like transportation, social events, activities, and common social areas. Assisted living is a next step when patients' needs become higher, and involves helpers in the home to assist with tasks like cleaning, meal preparation, medication adherence, and assistance with bills. Some facilities provide all meals in a dining hall type environment for those needing this level of care. Skilled nursing is an added service in some facilities when patients' medical conditions require daily health monitoring.  Memory care is an even more intensive nursing environment for dementia, where patients are typically confined to one area of the facility to prevent wandering, and are monitored 24/7 for medical need. Hospice care is offered in addition to any of these levels of care when patients are diagnosed with a terminal illness and expected to live less than 6 months.

Some families decide to keep patients at home throughout the course of illness, with family members primarily responsible for looking after the patient's day to day needs. Home health and hospice care can provide additional support to family in the home. Some families hire private health aides in addition to home health or hospice to give family members a break or allow them to continue working. Many primary caregivers become exhausted with the round-the-clock care that dementia patients require in the late stages of their illness. Because caregiver burnout is common, the importance of self-care can't be over-stated. I will dedicate future posts to this topic.

As patients with dementia are unable to do things independently, become combative, and sometimes dramatically change personality, caregivers and especially their adult children, must adjust to the loss of the person/mother/father they used to know.  Because the loss of the relationship happens gradually through the mental decline but before death actually occurs, the grief process is unique and starts early. I will write future posts on this topic, but in the meantime for more information, visit the grief section of AARP's caregiving website.

Look for future posts on other types of dementia, caregiver self care, and caregiver grief. And as always, if you or someone you know if suffering from grief of any kind, please call a counselor.