The DOs and DON’Ts of Dementia

Dear Dr. Hurd: My mother is 91 years old. I left my home in another state to come and care for her but due to a heart attack and a broken hip she is now in a nursing home. I am living in her house. I go up to the nursing home twice a day to spend time with her and do whatever I can for her. She is becoming more irrational all the time and I don’t know the appropriate way to handle this. Many times today she insisted I take her to check on Granny (her mother). We’ve had this conversation a lot lately and I keep reminding her that Granny passed away over 30 years ago but she won’t believe me. She assures me that it’s not true.

Some days she thinks Daddy (my father) was there and that she needs to get dressed because he’s taking her home. He passed away in 1994. The other day she told me that my son must be about 12 now. He’ll be 38 in two days. It becomes like an argument when I keep trying to tell her the truth about things but she keeps pressing until I have to give her some kind of an answer. This is very stressful for me. I’m feeling guilty because I can’t wait to get out of there after each visit. I would appreciate any insight you could share with me.

Reply: Clearly, your mother is suffering from some form of dementia. Dementia literally means ‘deprived of mind.’ It is the progressive decline in cognitive function due to damage or disease beyond what might be expected from normal aging.

The number one rule for coping with someone who has dementia is not to try fighting him or her logically. It’s a waste of energy. They have lost their normal brain functioning. In earlier stages of the illness, they go in and out of rational lucidity, and at later stages they may have ‘checked out’ entirely. The important thing to keep in mind is that neither you nor your mother can do anything about it. It’s sad, but true.

Dementia is a terrible thing, for sure. It’s hard to watch a once lucid—even highly intelligent—parent or other relative become incapacitated in this way. If one accepts the premise that the mind or consciousness is one’s spirit or soul, you are witnessing the slow death of one’s soul. How difficult this must be! At the same time, it’s crucial not to make your own life harder because of something you cannot control.

It’s hard for a rational, honest and non-manipulative person to confront what’s often required for dealing with dementia ‘ but confront it you must. Stop arguing with your mother that her own mother died years ago. She’s not going to believe you. It’s better for yourself—and probably for her—to simply placate her. Tell her that Granny has the flu and cannot come in today. Tell her that Granny will be coming in a few hours, just be patient. Just make up different things until you find something that seems to placate her.

If nothing placates her, then just change the subject. Don’t feel guilty for lying or manipulating in this way. Lying is wrong for a specific reason. Lying is wrong because it subverts the consciousness of yourself and the one to whom you’re lying. Your mother no longer has a consciousness to which this principle can apply. You’re not being dishonest by lying to a person whose mind is gone.

Consider why lying is bad in the first place. You are only subverting your own consciousness when you attempt to distort reality for the ‘benefit’ of another. Aside from a fact that it’s impossible to do this to your mother—since she no longer comprehends reality in a normal way—you’re actually accepting reality, yourself, when you acknowledge the futility of trying to use reason and logic with someone who no longer possesses these capacities.

I know that some dementia patients are lucid and aware at times. If you haven’t already, you’ll develop a pretty good skill for knowing when your mother is more one way than the other.

When she’s more lucid, and actually can reason and retrieve memory, it’s fine to try the truth. But whenever she asks a question with an outrageous premise—such as when her own long-dead mother is coming to visit—you know that reason and logic no longer apply, at least for this conversation.

Don’t feel guilty. It probably hurts your mother a lot more to inform her that her husband—your father—has been dead for 15 years than to simply tell her he’ll be by to see her later. When she tells you that your 38-year-old son is about to have his 12th birthday, simply reply, ‘Oh yes, and he’s so excited.’

Just go with the flow, as the expression goes. You can’t help what the flow is, and you can’t change its current or direction. So just go with it. I have heard this over and over from people I have encountered who successfully cared for a parent or other loved one with dementia. By ‘successfully cared for’ I mean they didn’t become unduly stressed. They just accepted it was the way it was.

Frankly, in a way, your mother is already dead and gone. You must allow yourself to grieve as if she had already died. At the same time, she’s still here and you feel an obligation and affection towards her because of who she once was—but, sadly, not because of who she is. She just isn’t the same person any longer, at least not if she’s in an advanced or total stage of dementia. If she’s ‘in’ and ‘out,’ then you can celebrate the times when she’s back, enjoy her fully, and know that in an hour or a day she’ll be gone again, and that’s just how it is.

Think of how one deals with a young child. You don’t get upset because a three-year-old only has the intellectual capacity or maturity of a three-year-old. You go with the flow. You get down on his or her level and laugh and cry at the things the child laughs or cries at. There is one crucial difference. A three-year-old has the capacity for primitive reason and logic, and the adult caretaker’s responsibility is to assist in the development of that capacity. For example, if the little one thinks there’s a monster under the bed, you take the fear seriously—but you proceed to use the scientific method (i.e., observation) to prove there is no such thing and, if the child can grasp it, why there could be no such thing.

You can’t use reason and logic with the dementia patient. This is because the disease is not just a breakdown in psychological or behavioral functioning (which can usually be altered or restored); it’s a breakdown in the capacity to think, to remember, or do any of the most basic mental tasks that even young children can do. Notice that most of my advice centers on your outlook, expectations, assumptions and thinking. These are what matter most, not because your mother is unimportant, but because you—not she—is the one who grasps the full magnitude of the tragedy.

Don’t add to your burden by trying to do or expect the impossible. So laugh with her, cry with her, be patient with her, and go out and guiltlessly live your life away from her. It is what it is, and you can’t change it. That’s the bad news and the good news. Since you can do nothing about it, there’s no need to fight and argue with reality. Embrace it, and move on.


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