Caregiver talking to older gentleman

Hard as it may seem to imagine the charismatic Churchill ever stumbling when speaking; however, we are all at risk of saying something we later regret. Often, this is as a result of answering too quickly, misunderstanding the situation or overlooking the repercussions. Alternatively, we may simply find silence awkward and would rather say something rather than nothing (so as to fill otherwise dead air). We mean well– however, words come out wrong when we speak hastily.

If you know a caregiver of someone with Alzheimer’s disease, be especially cautious with what you say and how you say it.

From my own experience with this condition (Alzheimer’s stole my father’s memories from him before he passed away), I found that others did not always completely understand my role and/or what I was going through and did not always offer what might not considered to be the most well-thought out advice. Fair enough – if you are not a caregiver, or have not had any experience with Alzheimer’s disease, it may be difficult to realistically understand what someone in this position is going through and/or the outcomes of the condition. But please do yourself and the caregiver a favour and think before you speak – a caregiver can be flustered, distraught and/or overwhelmed with daily responsibilities and cannot always give others the benefit of the doubt or will ask to clarify meaning. Have you ever been distracted and misinterpreted something which was said?

Please steer clear from these select phrases

You must feel alone. (OUCH!)

Caregivers may feel like they are adrift at sea in a leaky lifeboat; however, they are never truly on their own. With an estimated 500,000 Canadians having Alzheimer’s disease or a related dementia (source: The Alzheimer’s Society Toronto), you won’t have to look too far to find someone else affected by the condition. Sharing with and learning from another caregiver in a similar situation can be both therapeutic and beneficial. Additionally, there are many programs and services available across the country for Alzheimer’s caregivers. Instead of leaving the caregiver floating aimlessly, hand him/her a life jacket and recommend contacting The Alzheimer’s Society of Canada or the closest provincial chapter of The Alzheimer’s Society.

Your mother / father is wrong. (OUCH!)

Mom / Dad may think that today is Tuesday rather than Saturday (or mistakenly recognize you as a childhood friend from many years ago), but, trust me, pointing out such errors is futile. You may likely hear the very same statement a few minutes later (I can’t tell you how many times I heard the same stories from Dad but after he lost his ability to speak, I was grateful to have heard his voice for as long as I did). Arguing with someone with an Alzheimer’s patient is also embarrassing and maddening for someone in the early stages of dementia, as he/she may likely realize that his/her memory is starting to slip. It’s far better to smile and accept what the senior has said as truth – remember that it is Alzheimer’s disease which confuses the facts.

Things aren’t going to get better. (OUCH!)

With scientists continuing to toil in medical labs, I remain optimistic that the day may well come when a cure for Alzheimer’s disease will finally be found. While this may not be in either the senior’s or the caregiver’s lives, this pessimistic outlook will not be appreciated.

Things are going to get better. (OUCH!)

Conversely, you cannot realistically make such a lofty promise. No one knows when a cure will be found and, in the meantime, a caregiver will realize that this may well come too late for his/her loved one.

Finding things to do with your mother / father must be tough. (OUCH!)

Alzheimer’s patients will lose their memories but can still be engaged in plenty of other activities. I always liked to walk with Dad – a pastime he always enjoyed. In addition to being something we could do jointly, walking kept Dad limber too (another plus!). Winter walks were inside Dad’s care home while summer walks were outside. I also remember when my family took Dad out to a local ski hill. While this paled in comparison to the mountain slopes he once carved his way down, Dad was very confident on his skis!

Being a caregiver has to be difficult. (OUCH!)

Yes, caregiving can be overwhelming. Try balancing the needs of a senior with Alzheimer’s disease with your own life. Caregiving can easily become a secondary full-time job. Watching my father’s decline (and being unable to stop it) tested me to the very limits. Caregiver obstacles exist on many levels, but it may be better not to emphasize these– a caregiver does not have to be reminded of the demanding times.

I know how you feel. (OUCH!)

This nothing-short-of-cringe-worthy and hollow phrase has turned into a pet peeve of mine. It’s such an easy thing to say – you may sincerely believe that you are thinking of the caregiver, but the comment shows little thought and compassion instead. Emotions can run rampant and the caregiver may be feeling everything from joy (that Mom/Dad acknowledged a visit) to deep sadness and regret (over an impending passing of a loved one) in a single day. Have you experienced the same ride as a caregiver? If not, resist saying “I know how you feel” as it is, as best, a reflex action.

When talking with an Alzheimer’s caregiver, you can ensure better results by accentuating the positive or making a concrete offer instead. Try saying something like:

  • “Your mother/father would appreciate all the help you are providing”
  • “You are doing a great job with advocating for your parent”
  • “Other caregivers could learn a great deal from you”
  • “I understand how this can be a difficult time for you”
  • “Could I pick you up anything at the grocery store tomorrow and save you the trip?”

Finally, take a lesson from Winston Churchill. Pause and maybe pour a little gravy on those words before you speak them – this can help make them taste better if you have to eat them.

Photo credit: Some rights reserved by Alzheimer’s Association – Greater Illinois

Written by Rick Lauber
Rick Lauber is a former co-caregiver, established freelance writer and author of Caregiver’s Guide for Canadians (Self-Counsel Press). Rick’s book is available for purchase at national Chapter’s bookstores and online.

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3 Comments

  1. Seriously? Been a caregiver for 37 years ,mother had Alz.for 8 yearsV, telling people what not to say and not to, is putting things in people’s mind and they will be less likely to want to visit (having to watch their words as well). It is a lonely enough job. My personal opinion is I believe people are quite smart enough to figure this out.

    Reply
  2. It’s always interesting to hear from other caregivers about their experiences and preferences, but I wish Mr. Lauber would refrain from speaking on behalf of caregivers other than himself. Personally I appreciate comments such as “This has to be tough for you” because I see them as expressions of empathy, The people who make such statements are acting out of kindness, and I value that. On the other hand, I am not particularly interested in flattery, as Mr. Lauber seems to recommend. I know I’m doing the best I can, and I do not want other people judging me–one way or the other. The way I see it, “You’re doing a great job!” is just the other side of the coin from “You’ve failed.” I’d rather hear, “It’s not my place to judge you.”

    But that’s my preference, which is different from Mr. Lauber’s and probably from that of other caregivers as well. We are not all cut from the same cloth.

    Another concern I have about articles like this is that they may reinforce the feeling too many people already have, that they can’t talk freely to people like me because they “might say the wrong thing.” Isolation is already a problem for many caregivers. How many people are going to want to spend time with us if every interaction is a minefield of things that are “not ok to say”?

    The bottom line here: By all means speak for yourself, as much as you like, but I would prefer that you not try to speak for me.

    Reply
  3. For me, #6 is the worse. It was even more offensive coming from medical residents. If one watches the news, reads, etc. then it is widely known, that one of the things which must be CONSISITENT with an Alzheimer’s patient is a CONSTANT, UNCHANGING ROUTINE. To have a medical professional, who has spent many years in school try to convince me that a move [that turned out to be w/i the last 35 days of life for my dad], was the BEST thing for him…I was furious. From this infamous move, dad was never the same…he went downhill rapidly, consistently, and it was an agonizing process to watch, and was gone on day 32 after the move.

    Reply

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