The following is an excerpt from Surviving Alzheimer’s; Practical Tips and Soul-Saving Wisdom for Caregivers, now in an expanded 2nd edition. The book features the “Why-This, Try-This” approach to common challenges. Among the most wrenching situations: When someone with dementia believes a friend or family member who has died—or in Paula’s father’s case, a spouse—is still alive. What do you say or do?
BY PAULA SPENCER SCOTT
On the morning after my mother died, after a very short illness, in a hospital bed placed by home hospice in the living room of the house where I grew up, my four siblings and I sat together in the kitchen, our dumbfounded shock still raw. We heard the stairs creak as Dad came down — dressed in a suit. Grim and businesslike, he was ready to go to the funeral home to make arrangements. He often forgot appointments or what he’d just said, but he remembered this important mission. Despite his advancing dementia, he seemed almost like his old self, or at least a grief-stricken version of his usual sunny self.
The next morning, the scene was repeated. Numb siblings, whispered funeral plans over breakfast, and then Dad’s footfalls on the staircase. “Good morning,” he said in a bright voice. “Are you ready to go see Mother at the hospital?”
“Go see her?”
“She’s doing well and sends her love to all of you.”
My sisters and I exchanged uneasy glances. “Dad, Mom died two days ago. Remember?”
He burst into tears, stricken anew. “Why didn’t anybody tell me? I didn’t get to say goodbye!”
WHY it happens:
This is an extreme yet emblematic example. People with dementia may express an interest in talking to someone who died years ago, such as a parent, or two days ago (as my dad did). They may be uncertain about the death of a close family member: “Did my brother Bill die?” Or they may be oblivious — for example, talking about inviting Joan and Ralph over to dinner, when Joan or Ralph (or both) died some time ago.
Psychologists have told me that my father (who was deep in middle-stage dementia at the time) was able to recall, the next morning, that his wife had died because the shock of this seismic event was so great. But as time wore on — in this case, less than 48 hours — the fact of her death grew less distinct and more easily forgotten. Actually it’s hard to say whether Dad continued to remember the day of her death in more than a general way, or if it were too painful to go near. After the funeral, he never mentioned my mother (to whom he was married for 67 years and never left the house without kissing) to us again.
- Gently orient the person when he brings it up: “Dad, Mom died two days ago.” “I’m sorry, Joan was killed in a car crash in 1988.”
- Expect to hear an expression of grief or crying. These are normal human responses. There’s no harm in them; they’re not going to make the Alzheimer’s any better or worse. Respond to a fresh rekindling of grief with the same empathy and love as you would for a new grief.
- Brace yourself for no response. Some people, reminded of a death, say things like, “Oh.” Or, “I sure do miss her” and then leave it at that. Or they may say nothing. Don’t misconstrue these responses to mean that they didn’t love the person. The response given may be all he’s capable of right now. It’s okay.
- Turn the fact of the death into an opportunity for fond reminiscing: “Wasn’t she the sweetest person ever?” “I’ll always miss her piano playing. I remember the time she gave that concert at the school….”
- Don’t make a big deal about insisting the person absorb the reality. There’s no need to drive him to a cemetery to “prove” the death or show an obituary, for example. Logic is ineffective. Some people will ask follow-up questions, and others will be accepting and not talk about it further.
- Consider distraction in some situations. That might be kindest if, for example, the person becomes fixated on contacting some long-gone relative or wants to buy things for her and can’t seem to process the reality of a death.
- Ultimately, decide what’s best in your particular case. Some families find it easier to tell a little white lie when the questioning is persistent or the person becomes quite agitated every time the topic comes up. It’s possible to gloss over the fact, especially as dementia advances. When one woman kept asking about her long-dead husband, her daughter and son would put her off by saying, “He’s running late.” Or, “He’s still on that trip to China” (where their dad in fact once traveled for business). Such comments would pacify her in the moment, and then she’d forget about it. This is a less-good strategy, of course, if your loved one fixates on this falsehood and waits around all day in disappointment.
Should You Inform Someone With Dementia About a Death?
Families often also wonder whether to inform someone with dementia of the death of a loved one in the first place. The rationale people give for not saying anything is usually to avoid causing unnecessary distress. Some caregivers say they avoid sharing sad news because they don’t want to be asked about it (and have to talk about it or revisit their own grief) over and over.
Most dementia experts agree, though, that the better approach is to be candid. Everyone has a right to know this information, regardless of mental state.
Yes, he or she may have a strong emotional reaction. That’s okay. Seeing a household grieving without being told why is also something the person can pick up on and become distressed by. In a nutshell, it’s almost always better to know — even if the information is quickly forgotten.
Geri Hall, a wonderful memory-care expert and nurse who has worked at the University of Iowa and the Banner Alzheimer’s Institute in Arizona, offers some good advice:
- Tell the person at a time of day that tends to be best for him. Morning? After a meal?
- Make sure the place is free of distractions — TV and radio off, no crowds around.
- It’s okay to show emotion yourself. Take the person’s hand.
- Establish the context: “I have some sad news about your brother Jack.” Don’t make it like a quiz: “Do you remember Jack?” But help make clear whom you’re talking about.
- Don’t be surprised if the person with Alzheimer’s reacts by trying to comfort you. It’s a long-ingrained response. Some people, depending on their faith, culture, and personal mobility, welcome attending a funeral.
“Think about it,” Hall says. “If it were you who had dementia, wouldn’t you want to know if your loved one had passed?”
ABOUT THE AUTHOR
Paula Spencer Scott is the author of Surviving Alzheimer’s: Practical Tips and Soul-Saving Wisdom for Caregivers and Momfidence, and numerous collaborations, including Like Mother, Like Daughter, The V Book, and The Happiest Toddler on the Block. A former columnist for Woman’s Day and Parenting, she often speaks and writes about family, health, and eldercare. Five close family members have had dementia. Visit her at survivingalz.com and paulaspencerscott.com.