Wednesday, January 19, 2022

Dementia Losses Cause Grief

Dimensions of Dementia

Many of us have experienced grief in our lives, perhaps first as a young child when a treasured pet died or a beloved grandparent. Later we may mourn the death of a parent, a child, a friend. Or we may have grieved over the loss of a job, an unexpected move or retirement. Grieving itself is a normal and natural response to loss.

When a caregiver for my husband, Tom, I remember the big losses and the resulting sadness: the day he was diagnosed with Mild Cognitive Impairment and later with probable Alzheimer’s, when I realized he could no longer pay the bills, balance a checkbook, or even pick up the mail, the last day he drove and the day I placed him in assisted living.

What I was experiencing then was chronic loss, having to adjust to the needs of my care receiver with a loss of our future as it had been imagined, loss of our relationship as it once was and loss of someone to talk things over with. This last one was a huge loss for me.

According to the Family Caregiver Alliance on Grief and Loss (, these losses experienced by caregivers can lead to sadness, depression, anger, guilt, sleeplessness and other physical and emotional problems. “It is important to identify our losses, identify our feelings, and let ourselves grieve the changes that have happened in our lives.” If we can do this, “our feelings will less often erupt as angry outbursts…instead they can more easily be expressed as a shared loss of something treasured which family and friends can likely sympathize with leading to deeper communication and stronger relationships with those going through the loss with you.”

Suggestions to help us cope with grief from the Alliance include keeping a combination journal and gratitude journal, attending support groups and doing relaxation exercises.

The same site explains that ambiguous loss is what we experience when someone is still “there” but also not “there,” because of cognitive impairment, a traumatic brain injury, or a stroke. “Ambiguous loss can also be what we feel when our loved one with dementia has “moments of lucidity.” When she returns to her confused state, we often experience frustration and disappointment –renewed grief. My mother would have these moments and be quite clear but then quickly return to a confused state.

The Family Caregiver Alliance explains anticipatory grief this way. “When caring for someone over time, we may start to grieve that person long before he dies; we grieve the loss of the person’s former self. Experiencing loss on a daily basis can be just as painful as the loss associated with a death.” We may “wish it were over,” or think of our loved one as already “gone,” but are assured these feelings are normal. What anticipatory grief does is prepare us for the inevitable, allow us to make end of life plans, and experience the pain in stages. It may or may not lessen one’s grief when the person dies.

Another site, Pathways Home Health and Hospice, zeroes in on the difference between the way a person with dementia will experience death, and one without dementia. “Without dementia, recovery from death usually involves accepting the reality of the loss, learning to live with it and finding a “new normal.” For most, the pain of the loss can “transform into beloved memories.”

For someone with dementia, this process is often impossible. The person with dementia may sense that something is not right or is missing and may become agitated or restless. She might confuse a recent death with one from her childhood.

Suggestions for telling a person with dementia about a death include:

  • Tell the person as soon as possible.
  • Choose a time to talk when your loved one is well rested.
  • Use short, simple sentences and minimal details.
  • Use clear words like “”died” instead of “passed away” or “at peace now.”
  • Do not protect the person from the truth by saying the person is away and will be back later.
  • Support the loved one with physical touch such as a hug or holding hands.
  • Plan for someone to be with the person during services who can leave if needed.

Tips for helping the person accept death include:

  • Speak in the past tense about the person who died.
  • Talk with them about that person, look at pictures, and express your sadness.
  • Accept how often they want to talk about the person, often or not at all.
  • Dr. John Arnold, PhD of the Counseling Associates of Naples spoke with the Alzheimer Association’s Marco Island support group recently about grief. After covering the basics and the Dr. Kubler- Ross seven stages of grief (modified): shock, denial, anger, bargaining, depression, testing and acceptance, he talked about how grief affects us. Physically, it might be crying, low energy, headache or stomach aches, either loss of appetite or eating too much, particularly of comfort foods, being super busy or indulging in reckless, self-destructive activities, such as drinking too much.

Social symptoms of grief might include feeling alone, wanting to isolate instead of socializing, finding it hard to pretend to feel OK, feeling detached from others, and being angry that others’ lives are going on as usual and yours isn’t.

Emotional symptoms may be sadness, crying spells, anger or frustration, confusion or feeling overwhelmed, feeling guilt, worry, anxiety, being depressed, having memory problems or feeling distracted. Common spiritual symptoms may be questioning your faith, the meaning of life, suffering, questioning the reason for the death/disease, anger at God or coming closer to faith/God for solace.

Dr. Taylor suggests ways to move forward, including attending support groups, when caring for someone with dementia using respite care resources, spending time with friends and family, accepting the pain and healing and having both short and longer term goals. He emphasized if you are not feeling better over time or your grief is getting worse, your grief may have developed into complicated grief or depression. If that happens, he urged us to contact a professional therapist or a trusted faith leader.

His last comments were about never grieving alone and suggests joining a group with common interests, grieving, or hobbies, becoming creative with writing, painting, drawing, exercising that might include walking, sports, or bike riding, taking courses to learn a new skill, working as a volunteer and sharing your thoughts and feelings with friends, family, and loved ones.

Also on his list of things to try is Bilateral Stimulation for ruminating thoughts and relaxation. Check with a professional about this. I used bilateral stimulation, a core element of Eye Movement Desensitization or EMDR to reduce trauma in patients. It is also effective for relaxation. This technique was discovered by Francine Shapiro, psychologist and educator, when taking a break outdoors watching ducks fly from one end of a lake to the other and return. After recognizing her improvement in mood and thinking about how her eyes and head moved back and forth, with subsequent research she began using it with patients. EMDR is a psychotherapy treatment currently used to alleviate Post Traumatic Stress Disorder.

After writing about grief and remembering my losses and days of grieving (are they ever completely over?) I’m going to sit on my lanai and watch the pelicans fly from one end of the bay to the other. I recommend it to you.

Shirley Woolaway has an M. Ed. in counseling and worked in journalism, in business, and as a therapist in Pennsylvania. She has 25 years personal experience with dementia as a caregiver for family members with Alzheimer’s disease, and nine years as the coordinator of an Alzheimer’s Association memory loss/caregiver support group, earlier in Pennsylvania and now on Marco Island. She has been leading a dementia support group for eleven years, three in PA and eight on Marco Island. We believe that Shirley’s insights will prove helpful to many of our readers.

For help on all aspects of Alzheimer’s disease and other dementias call the national Alzheimer’s Association confidential, 24/7 helpline at 800-272-3900 or the local Bonita Springs office at 239-405-7008 for care consults and support group information. Also helpful with local educational programs, workshops, and support groups, is the Naples Alzheimer’s Support Network, 239-262-8388.

Leave a Reply

Your email address will not be published. Required fields are marked *