To Tell or Not to Tell: What to Do When a Surviving Spouse Has Dementia

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Dementia and the loss of a spouse are sad and challenging enough on their own, but when they coincide, the result can be truly heartbreaking. For many adult children, deciding whether to inform a cognitively impaired parent that their spouse has died is a serious and often recurring struggle. For someone who has not experienced such a dilemma, this would appear to be a no-brainer. However, as with many dementia-related quandaries, the question and answer are far more complex for those facing this reality.

There is no one-size-fits-all solution to this painful situation. In all my years of caring for seniors and interacting with other caregivers, I’ve learned a great deal from my experiences and others’ caregiving journeys. Keep in mind that the “right” approach depends on a few different factors and will often vary from day to day.

My Experience with Dementia and Loss

My struggle with this dilemma began when my father started receiving hospice care. At this point in my caregiving journey, Mom and Dad shared a room in a nursing home. For many years, they had lived in their own private rooms on the same floor, but the end was near for both of them. We felt they needed to be together, and their money was nearly gone from the expense of two nursing home rooms.

At first, I did not want Mom to know that Dad was going on hospice care since I knew she’d immediately think “death.” This correlation is what most people focus on, even though hospice services are a blessing for ailing loved ones. I knew this news would be traumatic for Mom, who was suffering from a great deal of physical pain and the effects of dementia. I wanted to spare her from even more anguish.

The hospice people kindly, but firmly, rejected my plan. Their chaplain handled informing Mom, and she was included in the care they offered. Of course, they were right to do so. It was painful for everyone involved, but these wonderful people walked us through every step. I continued to talk Mom through it daily, as she kept forgetting that Dad was on hospice. Eventually, though, it did not matter. She just couldn’t retain the information. Fortunately, she didn’t dwell on the connotation with death, and she loved the extra attention she and Dad received from the hospice team.

Upon Dad’s passing, the question was, how do we handle Mom? Obviously, she had to know he died. It was only fair, and there was no avoiding it. I cleaned out his side of their room the following day, and Mom got a roommate. Yet, every day she had to be told that Dad had died. In her mind, he was back in his private room where he had lived for so many years.

It was excruciating to have to tell her on a daily basis that her husband was dead. She experienced the shock over and over. Eventually, she began asking me, “Is he really gone?” I would confirm the news and she would just shake her head and say, “I can’t believe it.” She passed away five months after Dad.

Should a Caregiver Tell Their Parent the Truth?

I believe a surviving spouse should be informed of the death at least once no matter what. Every person, with or without dementia, should have the opportunity to mourn the loss of their significant other. In some cases, the news will sink in, whether you realize it or not, and it can have a surprising effect.

For example, a man with late-stage Alzheimer’s disease lived in my parents’ nursing home, and his devoted wife visited daily until she died from cancer. The man attended his wife’s funeral, but he seemed, as always, totally unaffected by anything around him. Shortly after, for no particular reason, he died peacefully in his sleep.

In many cases, one spouse is waiting for the other to go, so they no longer feel the need to be the caregiver, even if, in all practicality, they haven’t been able to provide care for years. It is their right to know that their life-long partner is gone. Could it speed up their own death? It is very likely it could. In my mother’s case, I don’t necessarily think it was a bad thing.

Reliving Grief

Another difficult decision arises when the surviving spouse cannot retain the news. Grief is natural and normal following the loss of a loved one, but dementia complicates this process. Whether you continue to remind them that their significant other has passed away is entirely up to you.

Different approaches work better for different people, depending on their cognitive abilities. For a parent who is in the beginning stages of the disease, it will likely sink in over time that their spouse is gone. Moderate impairment is more of a gray area. Perhaps reminding them for a few weeks afterward is a good place to start. If the person reacts intensely to this news each time and it affects their mood, behavior and health over the long term, then it may be wise to reconsider this approach after a certain trial period. Remember, you can’t make a dementia patient remember something.

As many dementia caregivers come to learn, little white lies are often necessary to simplify life and calm anxious or agitated loved ones. Refraining from bringing up their spouse’s death isn’t going to harm anyone. The challenge comes when they notice the absence and ask where their late spouse is. For loved ones in the advanced stages of the disease, explaining that their significant other is busy running errands or doing something they enjoyed in life may satisfy their curiosity and avoid what is sure to be a prolonged, painful reaction. This approach may be necessary if they cycle through this process quickly and frequently. Dealing with the fallout of telling the truth on a weekly basis is far more reasonable than a few times each day.

In the end, you know your loved one best and the choice is yours. I encourage caregivers to tell their family members the truth as much as possible. But if the loss of a spouse affects a dementia patient’s health and quality of life and hinders your ability to care for them, there should be no shame in trying everything you can to minimize their pain.

Carol Bradley Bursack

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Over the span of two decades, author, columnist, consultant and speaker Carol Bradley Bursack cared for a neighbor and six elderly family members. Her experiences inspired her to pen, "Minding Our Elders: Caregivers Share Their Personal Stories," a portable support group book for caregivers.

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16 Comments

In the 6 months since my dad passed away, I've told my demented mother that he has died probably 30 times. She gets stressed and can't believe it. We have read the funeral notice numerous times. It agitates her. We have resigned to saying that he is doing some of the common activities he really did do in life. e.g. playing poker, having the oil changed or shopping at Wal-mart. She still asks very often, but she accepts our answer and is not agitated.
Dear despr8, Good comment for me. I totally agree with you. Thanks for the comment. I really felt it would set mom back if I told her ab her sister. I don't think she would remember and possibly remember off and on and be sadder then she is at times. There are things that go on within the family that I dont tell her. It would add more worry. I just want her to be happy and comfortable.
I am one for being truthful with people. However, I would weigh the Pros and Cons at this stage. If she's not having an issue with it, I don't see why you have to tell her. On the other hand,
you don't know how quickly this AD will progress. My MIL went from stage 3 or 4 to stage 7 in less than a yr. Her mother had AD, when it wasn't called that and for her to progress to stage 7, it took her at least 5 yrs. So you really never know how fast it will go from stage to stage. If I'm not mistaken, there are 7 stages, maybe 8, but I think 7, that they go thru. My DPOA SIL gave me the title of a book--"The 36 Hour Day" by Nancy L. Mace, MA & Peter V. Rabins, MD, MPH. You may want to make appts. with her and get legal matters taken care of while she can still think for herself. Ask her things like, "How do you want me to handle it if you have to go into the hospital and on machines? Or do you want a 'DNR-Do Not Resuscitate' Order".
My MIL has a DNR with Comfort Care in place if she ever has to go to the hospital. If you don't already have this typed up or printed out and sticking to the refrigerator--you should do this:
Patient Information/Name, DOB, Her Primary Care Physician's Name, Address and Phone No. including Fax No. and what group he/she is in.

Patient Care History (Underlined)

ALLERGIES: What allergies she has, COMPLETE MEDICATION LIST: List them all and what they are taken for (even if they are taken occasionally--e.g. Tylenol 250 mg. Tabs/Caps Two (2) by mouth (PO) every (q) 4-6 Hours As Needed (PRN) .), Medical Condition (Underlined)--e.g. Alzheimer's Disease (AD), Surgery (Underlined) Whatever surgery(ies) she has had and when. I include any other doctor's names, phone #s, and addresses. If there's room I list what tests I have to go for and how often--e.g. Lipid Panel (Cholesterol, etc.) MUST FAST FOR 12 HRS. (annual or bi-annual). I had it in case she went to a new Dr. or the hospital.
Whatever you decide, Good Luck! ...and feel free to come back to this site when you have a question or you feel frustrated--it's good for info as well as venting.