by Alan D. Wolfelt, Ph.D.
When someone we love dies, we grieve. That is, we experience a wide range of thoughts and feelings inside us. We also express our grief by crying, talking about the loss, attending the funeral, and other actions. Grief expressed is called mourning, and mourning is how we heal.
For people with Alzheimer’s or other forms of dementia, the grieving and mourning process grows more complicated. Grief is always difficult, but when someone’s brain is no longer working well, it is even more challenging, both for the person with memory loss and for her family and caregivers.
This brochure is intended to help families and caregivers of dementia patients after someone they love dies or another significant loss. It offers affirmation, guidance, and encouragement.
A few foundational principles
√ Every dementia patient’s circumstances are unique. How best to help a particular dementia patient after a loss will depend on the degree of cognitive and physical decline, the patient’s personality, the particular circumstances of the loss, and many other factors. Always trust your judgment about the person in your care.
√ Whenever feasible, weigh the possibility of truth. Yes, the truth can be painful, but anyone who loves has a need and right for the opportunity to grieve and mourn.
√ Always, but especially after a loss, the person with Alzheimer’s needs your empathy. Empathy is more active than sympathy. Regardless of the details of the loss you choose to share or the exact wording you use, your empathetic presence and ongoing support is the essential helping tool.
Sharing the news
It can be hard to know if or how to share the news of a death with someone who has memory impairment. In general, if the person who died was part of the person’s everyday life, the news should not be actively withheld. Even if the patient doesn’t or cannot ask for the person who is no longer there, keep in mind that people with dementia can often still perceive and be affected by the emotions of others around them. When caregivers are upset, the patient may become upset without having any understanding of what is causing the strife.
Share the news at a time of day when he is the most calm and lucid. There is usually no need to disturb him in the middle of the night or at a time that isn’t good for him. Talk in peaceful surroundings that feel safe to him. Distractions and noise are hard for people with dementia. Turn off the TV and shut the door. Use direct, concrete language. Avoid euphemisms such as “passed away.” Tell him what happened without embellishing with too many details. Let his questions or behaviors guide what additional information to share. Be patient and present to him as he tries to process the new reality.
Should you share the news if the person who died is not part of the Alzheimer’s patient’s everyday life, especially if the patient doesn’t seem to remember the person? That’s a harder question to answer, but try applying this litmus test: If love remains, honesty respects that love. And people with dementia sometimes understand or absorb more than we think, even when they seem like they haven’t.
And what about repetitive death news sharing? Understandably, people with dementia often forget that someone close to them has died. Even when they are told many times, the next hour or day they may have forgotten again. This “Groundhog Day” routine is frustrating, and sometimes heartbreaking, for everyone involved. There is no right answer in such circumstances. Distraction and white lies are sometimes appropriate. Try to remember, though, that bearing witness to painful truths is a gift you can still give your loved one. While difficult, death news can spark reminiscing and rekindle old memories that the person with memory loss finds meaningful.
Involvement in the funeral
Involve the person who has dementia in the funeral planning if possible. Tell her about the choices that are being made. Encourage her to share her memories of the person who died and try to include those memories in the service.
Attending the visitation, the ceremony itself, and the gathering afterward is often also very meaningful for the person with dementia. What’s more, the familiar structure of the ritual can be comforting and supportive. It’s not uncommon for Alzheimer’s patients to be surprisingly compliant and even “present” at funerals.
If it’s not possible for the person with Alzheimer’s to attend the funeral, you can still use rituals to help him understand the fact of the death and work through his grief. Perhaps a private viewing time could be arranged. A minister or other spiritual leader could visit and conduct a short service at his place of residence. Maybe occasional visits to the cemetery could be arranged.
The more you include the Alzheimer’s patient in the funeral process—before, during, and even after—the more likely he will be to retain the fact of the death and grieve and mourn in ways that may help him.
Accept their mourning
In the beginning of this article, I said that grief is what we think and feel inside after a loss, and mourning is the outward expression of our grief. And it is mourning that helps us heal.
Whatever the person with Alzheimer’s is able to express after a death is not only OK, it’s likely helpful to him. Be patient. Expect delayed reactions. If he has emotional outbursts, that can be hard to watch, but maybe he is expressing his internal reality in the only way he can right now. Be calm, bear witness, and validate. Accept the patient’s responses, whatever they are, even if he seems cold or apathetic. And if he wants to talk about the death or the person who died, that is wonderful. Actively listen and affirm.
Join them in their reality
People with dementia often live in the past. That’s because long-term memory is the last to be ravaged by the disease. In these remembered days gone by, the person who died may still be alive and well. The Alzheimer’s patient may even act as if the person who died is there with her. When this happens, consider it part of the patient’s memory work. Join her there. Allow her to teach you what her life was like.
When they are not reliving the past, dementia patients are usually very much in the present. Because their short-term, semantic, and procedural memories are impaired, they live in the moment. To the extent that they are able, they see, they touch, they taste, they feel, they hear. Observe their behaviors and body language and try to discern any underlying emotions that may be affecting them.
When you are able to “read” a feeling, try (tentatively) naming it for them. “It looks like maybe you’re feeling…” or “Your reaction tells me you might be thinking…” This is a form of empathy, and many Alzheimer’s patients feel comforted and better “understood” through this kind of mirroring.
Final thoughts
Patience, honesty, and most of all, empathy and love, are the keys to helping a person with dementia after someone loved dies. Always remember that though dementia may destroy a brain, it cannot destroy a soul. The soul is where love and grief live, and any efforts you undertake to help the person express what is in her heart and soul will honor what has been most meaningful in her life.
Author, educator, and grief counselor Dr. Alan Wolfelt is known across North America for his compassionate messages about healing in grief. Among his bestselling books are Understanding Your Grief and Healing Your Grieving Heart When Someone You Care About Has Alzheimer’s. A faculty member of the University of Colorado’s Department of Family Medicine, he serves as Director of the Center for Loss and Life Transition in Fort Collins, Colorado. To order his books and for more information about grief and mourning, visit www.centerforloss.com.
AFTERTALK is a non-profit organization that depends on contributions to survive and thrive. We urge you to donate whatever you feel appropriate. JUST CLICK ON THIS LINK to be taken to our secure PayPal site. You gift tax deductible.
Thank you for your support.
Every Wednesday we publish AfterTalk Weekly. We invite you to submit your thoughts, essays, poems or songs. Please send to info@aftertalk.com
