Coping with Denial in Someone Living with Alzheimer’s
For a long time, I thought Mom was in denial. Then I learned about anosognosia.
Having walked the Alzheimer’s journey for 20 years with Mom I was a part of many of the strange phases that accompany this disease. The one thing that always surprised me was the denial. Both my maternal grandmother and great grandmother had dementia at the end of their lives. This knowledge made me assume that my Mom would be a lot more understanding of what she was going through herself.
That was not the case and it’s not because of her sheer stubbornness. It’s called anosognosia which is a fancy term for “they don’t know what they don’t know”. As caregivers, it’s important that we understand that they’re not just being obstinate.
Mom started showing signs of cognitive impairment early in her life. I believe she was 52 but we’ll never know for sure. She would take orders from clients with no information, directions, or expected delivery date. I got to the point where I’d monitor her conversations with clients so I could avoid awkward phone calls asking for details.
Surprisingly, this worked fairly well until one morning I found an “order” with no instructions. This made it impossible to even start on the job. When I asked Mom about it she claimed the handwriting wasn’t hers. That was an eye-opening moment. Mistaking her handwriting for one of the employees was bad enough, they were quite different. What made the situation worse was her statement “I don’t want to end up like my Mother” and stomping out of the room.
This Isn’t Going to End Well
Now I had two situations on my hands. First, I had to figure out what the client had asked us to do with minimal embarrassment. Secondly, I had to figure out what to do about Mom’s denial. (Or more accurately, her anosognosia.)
That day was almost 20 years ago and I didn’t know about anosognosia. Honestly, I thought she was being incredibly difficult. In my mind, it would have been a good time to discuss what was clearly going on and find ways to deal with it. That’s the key though, “in my mind”.
For someone with a mental illness like Alzheimer’s, they don’t realize that they are forgetting things. Had I approached Mom with a question that was less of an accusation maybe she wouldn’t have assumed it was someone else’s mistake. Of course, having been forced to alter my behavior to cover for her didn’t give me the opportunity to understand what was going on from her perspective.
How Do I Deal With This Issue?
So, how does one deal with anosognosia? If they’re convinced nothing is wrong with them, and they don’t need help, isn’t attempting to make them understand going to make things worse?
The short answer is yes. The longer answer is finding a way to work with their “denial” is important in your caregiving journey. For example, the client’s order with no information could have been handled differently. To say I was frustrated by this problem is an understatement. That frustration was very evident in how I worded the question. Instead of holding up the nearly blank work order and stating “what are we doing for Mrs. X?” I should have approached from a more forgiving position.
Had I understood that it was a situation Mom couldn’t control I might have said “I found this order for Mrs. X with no instructions. Do you know anything about the order?” That wording, accompanied by a more pleasant facial expression might have resulted in a conversation instead of denial.
Learning about anosognosia earlier on in Moms’ journey might have avoided a lot of fights, tears, and frustrations for all of us. Being an independent adult, Mom was very resistant to any kind of help. The second time she got lost coming to my house my husband programmed her GPS. The next time she was coming over I reminded her to use the GPS. She didn’t and she got lost, panicky and embarrassed.
I’ve learned that by asking them to do something that “helps” you instead of insisting they just believe you is one potential solution. Sometimes you have to set the stage so they do what you want.
Thinking You Don’t Need Help
Mom didn’t think she needed help showering. All of us can sympathize with the indignity of someone undressing and bathing you. If you aren’t aware that your memory is failing and you don’t think you need help, you can imagine the fights this sort of body intrusion generates.
One suggestion I share for showering cooperation would likely work for those who still have some basic abilities for self-care. Before getting your loved one out of bed, go into the bathroom, and get everything ready. Turn on the shower, throw the towel over the door, whatever they would have done on their own, do that. Once you’ve gotten them up and helped them into the bathroom, the running shower and preparation might jog their muscle memory. It doesn’t take a lot of higher thinking to follow the steps you’ve used to shower for 50 or 60 years.
Sometimes reminding them as in “you asked me to remind you that you wanted to wash your hair this morning” works. The challenge is to find something that works and then keep looking. As their disease progresses what worked today may not work tomorrow.
Anosognosia Seems to Get Worse in Some
Towards the end of her life, Mom got more and more combative. This is quite common yet always distressing. The caregivers in her care home took her swearing and scratching them in stride. Of course, I was horrified and looked for solutions for all of them. Once Mom was angered it was difficult to reverse that mood. That was common before the Alzheimer’s.
One thing to consider is this; if they don’t know they have a problem and you take away everything from them, they’re going to get angry. This is not to suggest that “taking things away” is done out of spite. Obviously, this is done for safety reasons.
One thing I realized, too late, was that even though Mom couldn’t give answers to an either-or question, it was still good to give her options. Looking back I can see how not giving her options once she seemed unable to give me an answer might have contributed to the combativeness.
Sometimes The Answer Isn’t Easy
This is how this unfolded. While waiting in a diner for her doctor’s appointment I asked Mom if she wanted Diet Coke or Iced Tea to drink. Her first response was “you have whatever you want”. I replied with “ok, I’m having iced tea, do you want tea or Diet Coke?” Her second response was less helpful. She proceeded to say things like “have whatever you want and don’t worry about me” which then launched into words that made no sense in context.
I ordered for her then gave her what I had ordered. In hindsight I should have ordered for her then when the drinks were ready, set hers in front of her, and stated “here’s the iced tea you ordered”. It seems like a small thing and maybe it was.
What I do know is from that day forward the combativeness got worse and worse. Allowing her to think, even if it was only for a few seconds, that she was in charge of even a simple decision might have slowed down some of the combative behavior. I’ll never know because I learned this too late.
All You Can Do Is Your Best
As difficult as it is, do your best to give them a sense of purpose or a reason for being. If they don’t know that they have a dying brain, everything you do to protect them and care for them is likely going to upset them. Yay for us, right?
Some things I tried with Mom (all of which might have been more successful had we started earlier) were tied with her desire to be helpful. She always wanted to help but was almost entirely unable to complete a task on her own. Finding things that she could attempt that didn’t add to the workload was ideal.
Placing napkins on the table before a meal was one idea. If they got on the table, great, if not, I could hand out napkins while also handing out the meal. If Mom persisted with the desire to help I could remind her that she was putting napkins out for everyone.
Simple tasks might be the best solution. Have them match socks (all the same color and brand make that easy) of fold towels. Some caregivers have kept their loved ones busy by having them sort playing cards, poker chips, or coins all under the premise that they needed help getting this done.
Keep An Open Mind on Options
Keeping them busy but also recognizing that dying brains likely need more sleep helps keep moods in check. If they feel useful and rested they’re more likely to go along with what needs to be done. If they bored, tired or angry, you’re likely in for trouble.
Anosognosia is one of the more challenging aspects of Alzheimer’s or dementia. Keeping in mind that they don’t have control over this can help you stay calm. While it’s difficult to deal with it’s easier than dealing with someone who is aware of their limits which causes other problems.
It’s interesting that Mom had anosognosia all the way through her journey. I wish I understood that while she was alive. It would have made things better for both of us. In fact, it was probably due to her “denial” that she had the fall that broke her leg. That injury was the final straw for her body. While I can’t use this knowledge to help my Mom, I share it to help other caregivers.
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