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Rewriting the Script – Helping Caregivers Navigate Dementia Issues

As a caregiver, the symptoms of dementia are far more obvious to you than to your loved one. Caregivers are overwhelmed with repetitive questions. 

He asked me the same question fifty times a day.

Or, Every time I am with my mom, she will not get past the loss of her car.  She is obsessed. She blames me constantly.

Or, I cannot even go to the bathroom alone; he shadows me everywhere all day long.

These common behaviors can be classified as:

  • Repetitive statements or questions
  • Perseveration, being stuck on a theme or problem
  • Catastrophic reaction, over-reaction to circumstances
  • Shadowing, closely following caregiver

Regardless of what type of dementia, these are behaviors which challenge our relationship. The mother who used to be able to recall all kinds of tips and strategies now cannot do so.  The husband who used to be empathetic and intuitive, is no longer either.

So how do we as caregivers navigate these changes?  We have years of a script we know inside and out. Now, we need to rewrite the script. A dementia diagnosis has changed the scenario, and as the caregiver, we are the only one able to change our response to the change. 

Reframing our response may be the most effective strategy to get through the day.  Dr. Harriet Lerner authored The Dance of Intimacy, an excellent resource to explore reframing a response in a difficult relationship.

In the dementia world, reframing a scenario which includes repetitive questions needs the caregiver to look behind the question(s). Anxiety is the underlying feeling of any repetitive question. Your response can lessen the anxiety or accelerate it. In the instance of asking for food:

First, always answer with a Yes, even if indeed the food has just been eaten. Affirming your loved one’s feeling validates it, providing some comfort he/she is understood.

Reframing a response might also include offering a series of smaller meals.

Yes, I like our breakfast too. We have good meals. How about a glass of juice or some toast?

You have reframed the question and lessened the anxiety. Arguing or repeating your reality (Mom, you just ate.) only raises both your agitation and her anxiety.

For the mother who perseverates about the loss of her driving privileges, consider what she is really stating, I am losing so much.

Reframing could be:

Yes, mom I know you love your independence. I understand that. You are a busy woman, with lots of places to go. Let’s get a calendar together so we can get some transportation in place.

In the case of the spouse shadowing his caregiver, look behind what his shadowing means. He is depending on his caregiver to be his protector, and fears embarrassment or danger if he is left alone.   

Reframing may involve:

Jim, I am going to the bathroom, but I will talk to you so you know I am right here.

The relationships we once had, have now shifted. Our traditional response when our loved one was unreasonable or cranky would be to argue, to state our needs, our frustration. And that will happen, even with a diagnosis. But reframing will make it easier, when we remember and can do it.

Part of the shift in your relationship will need for you to seek space, empathy and comfort from other sources. The more help you seek, whether from official sources, friends or families, the easier rewriting the scene can be.

 

By-line:  Cate McCarty, PhD, ADC has been collaborating with Arden Courts in a variety of roles since the late 90’s.  Her background in nursing, activities and admissions has given her a passionate commitment to quality of life for the individual and family with dementia.  Cate is now personally caring for her spouse who has an FTD diagnosis.

References

Lerner, Harriet. 1997. The Dance of Intimacy: A Woman’s Guide to Courageous Acts of Change in Key Relationships. Harper & Row, New York.

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