Reliving Grief: When a Surviving Spouse Has Dementia

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Unequivocally, the answer to this complicated situation is yes. For someone who has not experienced such a dilemma, this would be a no-brainer. However, as with many dementia-related quandries, the question and answer are much more complex for those who stare this harsh reality in the face.

Here is my story:

My struggle began as my family was finally able to get my suffering father into hospice care. I had fought doctors for quite a while, with the help of the nurses in his nursing home who knew him well, to get him better pain relief. The attitude of the doctor who viewed his chart was that he slept a lot, so he probably was not in that much pain.

My father's body language told a different story. He would half raise his head from the bed and slam his closed fist into his other hand over and over, struggling to get out words that made no sense. He could not articulate his pain, but he was trying to beat it to death. Dad was a gentle man, and this behavior was desperate and unusual. The nurses knew it, and so did his family. After much arguing, the head nurse broke through the barrier with the doctor, and we signed the papers for hospice care.

The dilemma was that, by this time, Mom and Dad shared a room in the nursing home. For many years, they had had private rooms on the same floor, but the end was near for both of them. They were dealing with impending death, and we felt they needed to be together for the transition. Furthermore, their money was nearly gone from the expense of two nursing home rooms.

I did not want Mom to be told that Dad was going on hospice care, since I knew she'd immediately think "death." After all, that is what hospice care does—help people live comfortably while they die. I knew this news would be horrible for Mom, who was suffering from much physical pain and the effects of dementia. I wanted to keep the facts quiet to spare her from even more anguish.

The hospice people kindly, but firmly, said no. Their chaplain would handle it and Mom was to be included in the care they offered. Of course, they were right. It was painful, but these wonderful people walked us through it. I continued to walk Mom through it daily, as she kept forgetting that Dad was on hospice. Eventually, it did not matter. She just didn't think about it as hospice, and she loved the extra attention they both got.

Then came the death watch for Dad. I asked Mom if she wanted us to scoot their beds together, but she said no. I asked if she wanted to sit near him in her wheelchair, and she said no. She only wanted the curtain between them drawn. We respected her wishes, which we immediately recognized as denial.

Eventually Dad died in my arms. I felt his spirit leave his demented body, where he had been trapped for ten years. I felt I had finally gotten my real dad back. However, the question was, how do we handle Mom? Obviously, she had to know he died. It was only fair. I sat with her as the funeral home collected his body. 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.

Again, part of this was denial, but part was memory. It was excruciating to have to tell her on a daily basis that her husband was dead. She had to experience the shock over and over.

Eventually, when I came in the morning to do her chores, she began asking me, "Is he really gone?"

I would tell her, "Yes, he is." Then she would just shake her head and say, "I can't believe it."

Five months later, my mom died.

Another Family's Experience

A reader on the AgingCare forum had a much more complicated situation. Her father died suddenly while he was traveling abroad in the United States. Her mother was used to his traveling, but with her dementia, her memory could not hold anything very long.

Their dilemma was, should they take Mom on a flight that would upset her so she could go to the funeral? Should they even tell her he had passed since she was used to him being gone, and, like my mother, she would have to go through the pain of digesting his death, repeatedly? What was to be gained by putting her through this pain when she was oblivious to what was happening?

They did end up telling her. I do not know all the details of how this complicated story unfolded, but the end result was the same. A spouse needs to be told of the death, no matter what. On some level, they will know anyway. Just like someone who doesn't have dementia, they felt it would be healthy for mom to mourn the death of a spouse.

Why Should a Caregiver Tell Their Parent the Truth?

In my parents' nursing home lived a man with late-stage Alzheimer's disease. His devoted wife visited daily until she died from cancer. The man, who actually had owned a local funeral home, was, of course, taken to his wife's funeral. He seemed, as always, totally unaffected by anything around him. Then, for no particular reason, he died peacefully in his sleep.

It is their right to know that their life-long partner is gone. Could it speed up their own death? It is very likley it could. I believe it did in my mother's case. Is this necessarily a bad thing, though? I don't believe it is. 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 give care for years. I believe this was a large contributing factor of my mother's "hanging on."

I'd like to think that this unfortunate woman, whether or not she was able to cross the ocean to go to the funeral, was told the full story as often as she needed to hear it. She suffered grief. Her poor family grieved for their father, and for the pain they continually inflicted on their mother each time she was told of his death. Yet, it was her right to know. I would like to think that, as in many cases, this woman was finally able to join her husband in passing on to whatever awaits us on the other side. I would like to know that, ocean or not, this couple was finally able to be together.

Do we tell the demented elder about a spouse's death? Yes. To not do so is an insult to the marriage bond they shared with their spouse. Is it painful for the family, especially when the elder is so affected by dementia that one does not even know if they understand? Yes. However, it is selfish not to tell them.

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.