Alzheimer’s disease is a tricky illness. It robs sufferers of their memories, but flashes of clarity are interspersed with the tragic moments of this disabling disease. So when big life events happen, it can be difficult for family members to decide what they should share with their loved one and what they should be shielded from.
When the spouse of an Alzheimer’s patient dies, the thought of keeping it a secret is certainly alluring. If they’re only going to forget, what’s the point of causing grief in the first place? But Alzheimer’s disease is more complicated than that, and hiding the truth is rarely the right choice.
So how should family members approach the death of an Alzheimer’s sufferer’s spouse and caregiver? For one, the surviving spouse should always be told about their partner’s decline and death. They may struggle to remember the news from day to day, and reminding a mother or father about their loved one’s death over and over again is certainly a difficult task in its own right. But after spending decades with a person, they deserve to know.
It’s especially important to be honest about the death when the deceased partner also served as caregiver. Even if she can’t express it, the surviving parent will realize her partner’s absence and the change in her routine. This is especially true if the death triggers a big change like moving from the family home into a long-term care facility. Make sure facility staff are aware of the loss, and make an effort to be as present as possible while your parent comes to terms with these life changes — even if it takes a while.
When your parent asks about her spouse, respond calmly and in simple language to make the information as easy to process as is possible. Use clear language like “died” rather than euphemisms such as “passed away.” If she doesn’t understand, don’t get frustrated or argue; instead, change the topic. If she continues to press the topic but is unable to understand, respond with something that is positive but not untrue. For example, if your mother asks when her husband is coming, you could answer “He would come if he could, but he can’t.” Or shift the conversation to happy memories from her marriage. Framing the response positively prevents undue grief while keeping the message consistent to reduce confusion. If your loved one is struggling to communicate at all, turn to touch to express reassurance and love.
At first, the Alzheimer’s sufferer may fail to commit the death to memory. Some will seem detached or unaffected by the loss, while others may grieve intensely each time they hear of a spouse’s passing. Over time, you may notice signs your parent remembers the death, even if she hasn’t quite accepted it. The questions may evolve from, “Where is my husband?” to “Is he really gone?”
You may even notice typical symptoms of grief like denial, depression, and withdrawal. However, signs of grieving are easily missed as they blend into the many dementia-related behavior changes. And when a parent oscillates between grieving and talking about their spouse as if he’s still there, it’s even harder to determine how she’s coping.
Ultimately, the grieving process is just as unique among Alzheimer’s patients as it is among the general population. Some sufferers may move forward with little distress, while others get caught up in a cycle of denial, anger, and depression. The most important thing is for family members to be there to help their loved one through, no matter the form grief takes.
Death is always difficult and painful, but dealing with death in the context of Alzheimer’s disease adds another layer of complexity. If you’re struggling to navigate this challenging situation on your own, turn to professionals for assistance helping your parent — and yourself — cope.
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