Wednesday, March 2, 2011

Am I In Denial?

I keep reading as much as I can about how to care for someone with dementia. The more I read though, the more I think much of it does not or should not apply to Mom. In fact, some of it I think is possibly morally wrong.

For instance, I just read an article called “Introducing In-Home Care When Your Loved One Says ‘No.’” The article is a list of suggestions. Upon first reading it, I felt like the title of the article should have been “8 Ways To Lie To Your Loved One With Dementia.” The list included suggestions of telling the person with dementia that the home health aid is actually a friend of yours, or that the service is free (even if it is not), or you are the one who needs help, or that the help it is only temporary (because if the person with dementia forgets you said this, then the next time the person comes in, it seems new, thus temporary.) I see this same approach taken in other places as well.
One adult daycare I know of has dementia patients fold towels, only to take the towels into another room, dump them out, and bring the towels back to have the people fold them again. These are the things that I see as almost morally wrong. Lying, treating an adult like a child. The first principle of my Unitarian Universalist faith is that every person has inherent worth and dignity. These suggestions for caring for someone with dementia seem, to me, to be taking away their inherent worth and dignity.

Or am I wrong? Am I just in denial?

What if the best way to care for Mom is to lie sometimes? When she gets to the point where she does not remember someone from one visit to the next, is it ok to lie and say they are my friend, when they are really her caregiver? What if recognizing Mom’s inherent worth and dignity means recognizing the reality of her situation and who she is now, rather than treating her like she is the same person she was ten years ago?

We recognize that children have different stages in their mental capacity. We do not expect small children to make adult decisions, that would be wrong, because they are not capable of such decisions. Sometimes we lie to our kids to protect them. Kids do the same task over and over again and they have fun doing it. To me it sounds wrong to treat an adult like a child, but if in dementia, a person’s mind is like a child’s, might it be more respectful to treat them as they are, not as we wish they were?

I don’t really know where I stand on this issue, because I am too close to it. This is my mom I am talking about. And, she is not far enough along in her dementia to not understand what is going on around her, so some of these examples, like the towel folding, would not apply to her. However, I am not a professional trained in how to care for people with dementia. If most of these well respected programs have such suggestions, maybe they are right. Maybe I need to be more open minded and change my ideas on what is right and wrong.

And, frankly, the other reason I do not like these suggestions, is because I can tell some of them would work. Even now, just a small white lie, or lie of omission, could avoid a whole day of anxiety for Mom. And if they work, that makes my life easier. And if it makes my life easier, I feel guilty. Should my life be made easier when Mom’s is so hard? Am I taking the easy way out? But then again, can I let my guilt get in the way of what actually might make Mom happier?

I have no answers on this topic and I don’t really know what I will do until I am presented with the situation. I just hope I make decisions that respect Mom.


Rev. Katie


  1. I work as a nursing assistant with the very elderly. There is no way to kindly keep telling the truth, the whole truth and nothing but when you are dealing with dementia. The towel folding, for example, calms people with repetitive motions and it makes no difference if you fold 50 towels once, or 5 towels each times 10. Since dementia isn't going to get better, the most important thing is to be kind and consoling. Your reality is not what your mother is experiencing. Guilt has nothing to do with medical necessity...helping your mom be as happy as you can, and as calm about her reality as is possible, is your highest good.

  2. As we lose touch with facts, what remains are feelings. Folding towels creates a feeling of contentment. The "fact" of unnecessary folding is trumped by the "feeling" of calm contentment, IMHO.

    Knowing it doesn't really matter what I think, and hoping you continue to find ways to make peace with all this,

  3. As you journey with your mom, you will learn that the "truth" is what brings comfort, peace, and security in the moment. It is also what allows you to keep your loved one safe and secure. This, to me, is the essence of inherent worth and dignity as it applies to people with dementia.

    Your mom's reality is not yours. She experiences herself as still competent and not in need of help. You realize this is not the case. She is not likely to ever recognize her own needs due to the dementia damage to her brain. She is unaware. Google the term "anosognosia" to learn a lot about this phenomenon.

    Some dementia patients eventually ask to see their own long-dead parents. In my opinion, it is cruel to tell them over and over that their parents are dead. This only causes them to relive the grief, or causes extreme distress. Instead, a "loving lie" that "dad is working in the garden, you'll see him later" repeated over and over as needed provides comfort and peace in the moment.

    What may be considered immoral when dealing with a person with full cognitive abilities may well fall into the realm of immoral and cruel with dealing with someone with dementia.

  4. For some reason I can't figure out how to comment on your individual comments, so for now, I will put them all in one post:

    Vikki: I like your comment about guilt having nothing to do with a medical necessity. It helps put things in perspective.

    Chip: I like hearing what others think! I am trying to focus more on the feelings rather than fact. As you know, that is often a ministers job in such situations, but they always say you can't minister to your family :-) I keep reverting to trying to fix things. My CPE training sometimes flies right out the window.

    Rebecca: Reading about anosognosia was quite helpful. It helps me understand that Mom's reasons for not seeing the reality of her situation are clearly different than mine, which is sometimes denial because of fear. I also like how you say: "'truth' is what brings comfort, peace, and security in the moment."

    To all of you: Thank you so much for your helpful and kind comments! They truly make a difference.

    Rev. Katie

  5. I don't know if your mother is still alive, but I just went through end-stage Alzheimer's with my mom and she finally died in May. When mom's mind really started to get bad, she began repeating the same questions again and again. Nothing that anyone said to her would stick, and we finally figured out that it just didn't matter how we answered the question. She wasn't going to retain whatever we said, so the best thing was just to give as brief an answer as possible. People change dramatically with Alzheimer's, and at some point you just look at the person and can't believe this is happening. You wonder if your real mother is hiding somewhere in this stranger's mind. Other people can tell you about it, but you have to experience it for yourself to understand how much it hurts. It is impossible to preserve the person's dignity and continue treating them as if they are a competent adult, so you have to adapt in whatever way you can. It's very painful to be forced into a situation where you have to deal with the fact that your parent is totally incompetent and can no longer remember how to do the simplest things, even take out their dentures or feed themselves. Fortunately at some point they lose all awareness of their own medical condition and what's happening doesn't really bother them that much.