Covering

Dementia sneaks up on you.

My mom was always, well, different.  She was different in a kind of fun, goofy way, and we used to tease that she was 40 going on 13.

After she was diagnosed with dementia, we started to revisit some of that goofiness.  Some strange things she had done and said over the years started to make sense, in light of the diagnosis.

This was over a period of many years.  So why didn’t we “get” it sooner?  Why did it take so long for my dad to have her tested?

I think the answer has to do with “covering”.  Mom’s dementia was early, but slow, onset.  She must have known she was forgetting things, but she didn’t want other people to know it.  So, she covered.  She pretended to understand what was going on.  She told everyone she liked to do things at the last minute because she knew she couldn’t handle long term advanced planning.  If a topic came up in a conversation that she didn’t understand, she would change the subject.  She learned to say things like, “I can’t imagine why you would ask me that!” if someone asked a question she couldn’t answer.

“Covering” and denial go hand in hand.  A person who notices they are forgetting a lot doesn’t want to think it could be dementia.  They come up with ways to get around it, both in their own mind and to protect themselves.  They do it because they are afraid…afraid of what it may mean and afraid of what other people are going to think.

Covering isn’t limited to the person affected with memory loss.  In my mom’s case, my dad was right there with her denying what was going on.  The more her disease progressed, the more isolated they became.  It’s easier to cover if you limit the social situations you have to deal with.  Mom and Dad quit having friends over, going out with anyone, even going to church.  Eventually, the only people allowed in their house were us kids, when we would come to visit. 

Because we were busy with our own lives and families, we didn’t really notice what was going on.  We knew SOMETHING was going on, and we complained to each other about our parents’ difficult behaviors.  We thought there might be something more serious going on with Mom.  The fact was, even though her father had died of Alzheimer’s, we didn’t want to think about that possibility either. 

I know I’m not a psychologist, but I’m just sharing with you what I learned from this period in our lives.  In retrospect, I wish I had noticed that Mom was covering.  I wish I could have understood what she was going through so that I could have behaved toward her in a more loving and understanding way.  I just wanted her to be there for me and all my problems, because she was my mom.   It didn’t occur to me until much later that I needed to be there for her.

I guess, in a way, I was covering too.  I didn’t want to face the reality of what was happening so I just didn’t go there.  Or if I did allow myself to think about the possibility of dementia, my reaction was only anger.  I’m not proud to say that my anger was directed at my parents.

There is so much more I need to tell you. 



Dementia Changes Everything

When my grandmother checked my grandfather into the Alzheimer’s home, it was lunchtime.

“Let us take him back to eat,” the attendant told her, “while you stay here and finish filling out the paperwork.”

“But,” my grandmother protested, “he won’t eat if I’m not there to feed him.”

“It will be okay,” she was told, and the attendant gently led my grandfather away.  My grandmother, agitated, filled out the papers as quickly as she could, then rushed into the dining room to help her husband of over 60 years eat his lunch.  She quickly found him and sat down next to him.

“Well, hello!” He said with a smile.  “What’s you’re name?”

“Kathleen,” she answered.

“Isn’t that something,” he replied.  “My wife’s name was Kathleen!”

My grandfather died of Alzheimer’s.

My uncle died of Alzheimer’s.

My mother died of Alzheimer’s.

My aunt has it.  It’s possible that my brother has it, too.

If you are reading this blog, chances are someone you love has been diagnosed with dementia.  Or, maybe you are afraid of getting it yourself.  I know I am!  But I am writing this blog for the family members who don’t have it.  I want to share with you what I learned through my mother’s battle with this horrific illness.

I don’t claim to have all the answers.  Dementia takes on many forms and is different for each patient.  But one thing I do know:  Dementia changes everything.  It changes all the rules of how you get through each day, how you interact with your loved one, and how you deal with the rest of the world as a result.

I’m here to tell you about some of those changes.  I hope it will help.