Two things that should be a part of every caregiver bootcamp:
- An introduction to the medical reality that our loved ones may not be able to recognize that they are having cognitive issues. It’s called Anosognosia and if someone in your life has had a stroke, or been diagnosed with dementia it is something you should understand. The individual is not purposefully dismissing you as I thought of my mother. I assumed she knew something was wrong but decided to ignore it and dismiss my concerns. However, the reality is that most likely she really had no idea that she was failing cognitively. One report cited that a “categorical diagnosis of anosognosia was made in 42% of patients with mild AD” (Alzheimer’s Dementia). Another report cited that over 80% of those diagnosed with varied dementia had anosognosia.
- There are times when honesty is painful for everyone when a loved one has dementia. When my mom wondered when Dad was coming home from the hospital, I initially walked her through his death and how we were all surrounding him. I still puddle at the memory of these conversations and it’s been more than five years since I had them with Mom. She relived the pain as did I. Why didn’t I just say that he would be home in a few days? I had a fixed belief that honesty was the best policy … but there were many times when it didn’t serve my Mom.
I wish I had learned and understood this much earlier in my journey as a family caregiver. It will take some time to understand and adapt. However, being armed with this information can help you be a better care partner.
When I finally learned this information and how to apply it, I promised myself that I would tell the truth once and after the initial conversation would find a kinder way to respond to Mom’s questions or demands.
Once I learned how to change, life for both of us got better. Shared.
Thank you. I needed to hear this. This is one part of the journey that is very hard for me. Telling the truth is deeply ingrained. We are now about 3 years into the stage of dementia where this applies and I still struggle with it daily causing myself a lot of frustration and stress and my husband much anxiety.
I understand. It took me a while to adapt. I still held to my rule to tell my mom everything once and deal with the consequences and then could move on. It didn’t help her or me to dwell on what always felt like a negative choice. Be kind to yourself! I’m actually realizing years later honesty isn’t always the best policy in lots of life situations.
Kay, this is the very best advice you can give. I learned it too late to make a difference in the journey I took with my Mom. At some point I decided the answer would always be “tomorrow,” and if she questioned me I would say, “remember…we are doing that tomorrow,” because tomorrow is always that. This seem to soothe her but never ended the questions. I hope your advice comes soon enough to help another caregiver.
Thanks Jeanne.
What a great article! It is unfortunate that people learning their loved ones have dementia don’t get handed a How-To book, on what to do and not to do. what to say and what not to say. I too wish I had learned and understood this much earlier in my journey as we learned about my mom’s dementia.
There are lot’s of books out there but who in the midst of caregiving has the spare time to read! I realized I am a “learn by doing” so even if I understood it in concept, I kind of had to live through it, do it, to really understand. Thank you!
Reblogged this on My Dad Is A Goldfish and commented:
Thought provoking post from Kay Bransford on whether or not honesty is always the best policy when caring for someone with dementia.
I’m realizing in my 50s it might not be best unilaterally applied for anyone. Sometimes you don’t HAVE to say everything … I feel like that is a blurry honestly line. Is not telling them everything a lie by omission?
We had this debate when my stepmother walked out on my dad. Did we tell him she’d left him or did we fudge and say she’d gone to visit her sister (something she did do regularly)? I was so angry with her I wanted to say she’d died but my sister wouldn’t let me because she said dad would grieve. We fudged. I’m sure Dad knew – he always knew when I was a kid if I told a lie!
Thank you, I needed to read this from someone who’s parent was dealing with dementia. Everyone kept telling me to lie to my mom, she won’t know the difference but I couldn’t and of course it cause major arguments between my mom and I. I am finally trying to divert her questions about her past and I’m noticing that she is calmer then in a few minutes she will say “oh yes, I no longer own the house I grew up in” or she will remember all of her brothers have passed away. I thought by telling her the truth I was helping her remember.
I’m still a work in progress and I struggle every day with what’s happening to my mother who has always been my rock and voice of reason.
We are all a work in progress. I started to notice how my mom sensed my emotions and when I was lying … I think I sent out anxiety vibes … so I wanted to figure out how to better navigate those issues. It’s so hard to lose a loved one that is standing right in front of you — and adapt because their cognitive abilities are changing. You mom is lucky to have you.
This may seem off topic but it’s on the topic of anosognosia which I rarely see mentioned. People with chronic schizophrenia also experience anosognosia. I suspect illnesses that affect cognition share certain features. When a person with schizophrenia is symptomatic she will almost always refuse treatment because she doesn’t know she’s sick, not even when she’s sleeping in rags in the street.
Thanks for telling me. I hope to bring more light to this. I was sure my mom knew and was just trying to ignore it …. turns out she was unable to comprehend it. It would have helped me better adapt to help her had I understood.
One of the reasons we have so many people with chronic untreated schizophrenia living on our streets is that most people genuinely believe they are exercising their ‘right’ to refuse treatment. It’s so sad, because so much of the suffering we see on our streets is the result of a mistake in perception.
How I would have appreciated going through “caregiver bootcamp” when I first started caring for my grandmother! It should be given to every caregiver. There comes a time where it is more important to reduce suffering than tell the truth. If caregivers are armed with this information sooner, it makes the job much easier.
Thank you. My grandmother had Alzheimer’s and I think if we had known this and acted/reacted accordingly, parts of the journey might have been easier.