My mother was diagnosed with Alzheimer’s sometime around 2013. She was in her mid-fifties. She had signs of the disease for years prior to her diagnosis, but part of the reason it took physicians so long to come to a decision was her younger age.
The doctor who finally diagnosed her did so after sitting across from my mom, asking her questions about her life. This was of course, the last test in a string of thorough physical exams and standardized cognitive exams – the works. As the doctor asked my mother questions, my father stood behind my mother. The doctor would ask my mom a question, hear her answer, and then look to confirm the answer with my father, with a nod or shake of his head. After a heavy round of questioning, in which my father silently denied answer after answer, the physician came to her conclusion.
My mom was understandably devastated. When they got home from the appointment, she was inconsolable. We all settled into a cloud of utter sadness, not knowing one thing to say that could possibly lighten the mood.
The next day, my mother was in better spirits. She was going about her regular routine, puttering around the house, just like she had for the past two years since she stopped working as a nurse, after it had become apparent to her employer that she could no longer do her job.
Then, in the midst of her happy-go-lucky routine, she made a comment – I can’t remember exactly what it was – but it was something that indicated she had no recollection of the previous day’s events. Her brain had wiped yesterday completely into oblivion.
And then my father and I made a huge error in judgment: we reminded my mother that she had been diagnosed with Alzheimer’s Disease.
Why oh why on Earth did we ever think that was a good idea? She immediately went into a state of denial, followed quickly by the terrible sadness we had witnessed the day prior. And each of us relived her diagnosis all over again.
It is so natural for us to want to tell our loved ones the truth, always. To remind, to correct, to logic and reason with. This was one of the most difficult mindsets for us to break free from as we went deeper down the path of my mother’s illness.
With the help of caregiver communication classes, and our own trials and errors, our family began to understand the need for compassionate communication, which often involves lies of love.
We learned that all of our natural tendencies – to keep the person in our reality by reasoning/reminding/correcting – those could often lead to distress and frustration for both parties. But caring for and connecting with someone with dementia requires a new skill set. We need to forget our reality for a bit, and join them in theirs. And trust me on this – the stress levels can decrease ten-fold with this approach.
I’ve outlined some suggestions for some common scenarios below, in which a distraction or diversion may be helpful. Please feel free to comment with some ideas of your own.
When they want to drive the car:
Instead of: “Mom, you know you aren’t allowed to drive, you have Alzheimer’s”
- “Mom, I know you want to drive, but maybe we can go make have some tea first.” (Sometimes distracting with another activity may be enough to get their mind on something else)
- “I’m sorry Dad, the car needs some repairs right now so we can’t take it out, but how about we watch the game for now?”
- “It’s so nice out, why don’t we take a short walk instead?”
- “There’s no gas in the car, sorry Mom! How about a craft instead?”
If they ask where their deceased spouse/sibling/friend is:
Instead of: “I’m so sorry Dad, but Mom died last year.”
- “Hey Dad, Mom just stepped out for a bit, how about we do a bit of gardening and we can try to catch up with her later.”
- “I think your brother may be out of town for awhile, how about we look through some photo albums for now?”
When they tell you it’s time for them to go to work:
Instead of: “Dad, you know you haven’t worked in five years.”
Try this: “Dad, you have the day off today! Let’s go do something fun, how about taking the dog to the park?”
The key is having something else to suggest as you steer your loved one away from the original request that you aren’t able to grant. This prevents you from having to say “no,” and setting them up for disappointment, and instead, getting them interested in something else. It can be helpful to make a list of things your loved one is interested in doing so you have suggestions ready to go.
It can also be helpful to take a minute to reflect on the person’s request, and ask the question, “Why are they asking for this thing?” If they ask to drive the car, are they bored? Feeling smothered? Wanting independence? What can you do to satisfy their need in another way? Alzheimer’s often forces us to step back and get creative.
And remember – we are all learning as we go, so please be easy on yourself.
Thank you so much for this.
I hate ‘lying’ to my sweet Momma, I feel so deceitful.
However, I kinda thought it was necessary … to protect her feelings and not cause her added stress/sadness/anxiety.
So much guilt is involved with caring for a loved one with dementia … you just lightened my load a bit and I am thankful for that.
Laura, I totally get it and thank you for the kind words! Dementia is so different from other diseases – and there isn’t really a rule book. We’re all just doing the best we can, and what feels right. All the best to you. -Melissa