Not Part of the Plan

Dementia turns your life upside down.

We plan our vacations.  We plan for our retirement.  But we don’t plan for dementia.

Maybe we should.  I haven’t looked it up, but it seems as if more and more people are suffering from this disease.  Twenty years ago I didn’t hear anyone talking about someone in their family with dementia.  Now, it’s hard to think of a family who is untouched by it.
 
Of course, we don’t want to plan for it.  We don’t want to think about it.  We don’t want to think, “This could happen to me.”  We don’t even like to think about the end of our life, much less an ending that we may not even be aware of.

One of the most loving things my dad did before he died was to go through all his files and clean them out.  He put all his affairs in order.  He did everything within his power to make his passing easier for us to deal with.  It probably helped that he was an obsessive-compulsive kind of guy.  But, at the end, as difficult as it was, at least the difficulty was minimized by his loving action of “cleaning house” before he left us.

I’m not sure how one would plan for dementia in a way that would make it easier on the people we love.  But one thing I know…for sure…is that in order to deal with it, we have to face it.  Acknowledge it.  Accept it.  Even if every fiber of our being is screaming, “Run away!  Run away!”  We don’t always know what is around the bend in the road, but when we get there, whatever is there is still there.



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Good Days, Bad Days

People with dementia are still people.

Like the rest of us, they have good days and bad days.  And, in their case, they have days when they are more–or less–confused than others. 

This can be confusing to you.  Maybe you just started getting used to the idea that they are changing, and then, out of the blue, they start making perfect sense and seeming perfectly grounded in reality.

My reaction to these days (or moments, even) was “Oh, good!  Mom is okay!  All this other stuff was just my imagination!

Then she would say or do something that confirmed everything was not okay, and it was not my imagination.  And I found myself standing there not knowing what to trust, or what to believe about what was happening.  Everything I had learned about life up to that point, about order in the universe, and cause and effect, flew out the window.  It can be very unsettling.

It helped me when I began to understand that I was seeing “good days and bad days.”  This I can relate to!  I have days when I feel mentally on top of the world and others when I find it difficult to think straight at all.  Even though what I experience is not dementia (we hope), I can still use that experience to understand that people with dementia are sometimes more “there” than at other times. And I can use that understanding to comfort myself on the bad days, knowing that there is a possibility of a better day–or moment–to come.



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"Scared All the Time"

Dementia is scary.

I know you’re scared.  You’re afraid of what’s coming, and of not knowing what to do.  You’re afraid you won’t be able to handle what comes.  You wish it would all just go away.

For a moment, though, I would like you to think about how scary it is for the person you love.  In the early stages of dementia, they are very much aware that they are losing the ability to cope with the world.  Their fear at this point is twice as bad (in my opinion) than any fear we could possibly feel.  They know that their mind is slipping away, and they know that their condition is going to mess up your life royally.  And they know there’s not a thing they can do about it.

One of my biggest regrets is how I interacted with my mom in this stage of her disease.  We were still in the “there’s something wrong but we’re not going to talk about it” mode.  I was home on a visit, and the two of us were alone together.  I don’t remember how she brought up the subject, but she said, “You know, I might have Alzheimer’s like Papa did.  I worry about your dad.  I don’t want him to have to deal with all that.”

Here’s what I wish I would have said:  “Mom, what is most important is that we all love you, and if you have Alzheimer’s we are going to do everything within our power to help you.  Please don’t worry about Daddy.  Mary and I will be here to help and support you both.  We love you both, and whatever happens, we’re here for you.”

Here’s what I said:  “There’s nothing wrong with you!  That’s not going to happen!”

I had an opportunity, at a point when she was aware that her mind was slipping away, to reassure her and put my arms around her in love.  But I froze.  Denied.  Dismissed.  I did these things because of my own fear and my unwillingness to face the truth of what was happening.  And my reaction probably made her feel even more alone and afraid of what was to come.

Yes, dementia is scary.  For everyone involved.  As hard as it is to face, I ask you…I beg you…to try to put yourself in your loved one’s place.  How would you want people to behave toward you if this nightmare was happening to you?  I know it’s hard.  But I am here to tell you that you will not regret the moments that you empathize with them and treat them with compassion.  I read once that bravery is being scared, but doing the right thing anyway.  Being scared is part of this package, but we all have the choice to do the right thing anyway.  Be brave. 

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Sanity Break

As I’m sure you can imagine, this is not an easy blog to write.

So today, I’m taking a sanity break.  Today, I’m going to focus on all the blessings in my life, and practice being grateful for the many gifts God has given me.  Gifts like my sister (my friend), who might not even be my friend if we hadn’t traveled together the rocky road of our mother’s illness. 

Sanity breaks are important.  Dealing with dementia, whether in real time, in memory, or in theory, can wear you down.  Confronting such an issue takes energy.  It demands a lot from you.  So it is important to give yourself time to regenerate.  To stop and smell the roses, if you will.

Hmmm.  I just looked at this picture, which I took near my home in California.  I’ve been looking at this picture for a couple of years now, enjoying it, and this is the first time I’ve noticed that the trees aren’t green.  Just goes to show you that life can still bring us beauty even if everything isn’t perfect.  And maybe that field of yellow flowers is all the more beautiful because of the contrast against the gray of the trees.

I’m just saying, there is beauty to be found, even in a life dealing with sadness and loss.  It depends on where you choose to focus.  Today, I will focus on the beauty God gives me in His creation.

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Containment

It was around 4:00 in the morning.

 

My dad’s doorbell rang.  When he opened the door, he saw a policeman.  Seated in the police car in front of his house, was my mom.

 

The policeman explained they had found her walking along a busy street and had stopped to check on her.  They must have offered her a ride home, seeing she was confused.  She had directed them to this house…her home.  But when they asked if she knew this bathrobed and house slippered man standing in the middle of the front yard, she told them she had never seen him before in her life.

 

For some period of time my father and the officer stood in the yard, while Mom continued to deny knowing her husband.  The officer didn’t know what to do.  He couldn’t just leave her there, even though she had said this was her house and my dad said she was his wife.  As long as she denied knowing him, they weren’t going to leave her with my dad.

 

Finally, in frustration, my dad said, “I don’t know what to do.  I guess I’ll call Mary.”

 

“Who’s Mary?” the office asked.

 

My mom chimed in, “She’s our daughter.”

 

Go ahead, chuckle!  I did!  Even in all its tragedy, it’s a funny story.  The policeman made Mom get out of the car, Dad called Mary, and that day began a new chapter in all our lives. 

 

The three of them sat around the breakfast room table and rationally discussed what needed to be done.  Mom agreed that she should move to an Alzheimer’s facility where she had stayed temporarily after a recent minor surgery.  In later days, when she wanted to know why she was there and why she couldn’t go home, I took comfort in remembering that it was her choice to go there.

 

I should tell you that I’m not telling her story in chronological order.  But, given the topic we’re discussing, I think it’s okay.  Maybe it’s even appropriate to jump around a little!  Moving Mom to the Alzheimer’s facility was not an easy decision, even though it may seem so here.  It was gut-wrenching.  My dad really wanted to care for her at home. 

 

So this is where we’ll leave her today, nestled safely behind the locked doors of what was to be her home for the remaining years of her life.  It was a place for which I was grateful, and which I also hated.  Such is the ambiguous nature of this disease.  Given a choice between intolerable and unacceptable, what do you choose?  What I hope to share with you as we go along, is how find a way to choose love.

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There, But Not There

Dementia is confusing. 

Baffled. Dumbfounded. Lost.  No, I’m not describing the person with dementia.  I’m talking about you and me.

There I was, seeing  my mom, but not my mom.  She looked like my mom.  She sounded like my mom.  But she didn’t always act or speak like my mom.  Sometimes, she seemed okay, and I held onto those moments like a lifeline in a turbulent sea.  But then she would do or say something that would just floor me.  I didn’t know how to respond. 

My first impulse, of course, was to correct her.  Make her get it right.  Help her to remember that we talked about this very thing only yesterday, or even ten minutes ago.  I found myself starting sentences with phrases like, “Don’t you remember…” or “We just talked about that!” 

My dad was even worse.  He argued with her.  His demeanor  was angry and impatient.  Watching him interact with her this way upset me.  I began to see that she couldn’t help not remembering, and arguing with her didn’t help her remember any better.  I began to wish he wouldn’t argue with her, and then I started arguing with him about arguing with her.

I spent a long time being angry with my dad about this.  When I look back on those years now, I am more forgiving of his behavior.  He, after all, had to live with her every day and night.  He’s the one who was losing his spouse of over fifty years, piece by piece.  He’s the one who had no one to really talk to.  In the years before our family members became able to openly discuss what was happening to my mother, he was truly all alone.

The effect of all this confusion and anger on our parts was hard on Mom.  She became fearful, especially of my dad.  She started sleeping in a separate room, and told people that “that man” in her house wanted to hurt her.  This only made him more frustrated and upset, because he really was trying to take care of her of the best he could. 

Meanwhile, my sister and I were constantly emailing and talking on the phone about what was going on.  Things were getting worse, but we felt powerless to intervene.  After many attempts to help, and much angst, Mary told me we were just going to have to wait for something to happen that would force a change.

Something did.

 

 

 

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I Don’t Want to Go There

Dementia takes you where you don’t want to go.

Mom and I used to talk on the phone a lot.  When I would come and visit, we’d often stay up late into the wee hours of the morning discussing life and philosophy and the nature of man.

In anticipation of a visit I often called every day.  We would talk about what we were going to do while I was in town and make plans for dinners with my sister and her family.  I arrived on one such visit, after daily phone calls during the preceding week, and we held our traditional talk long into the night.

The next morning I came downstairs and found Mom in the family room in her robe.

“It sure is good to have you here,” she said with a smile.  Then she said, “It sure was a surprise when you came!”

I think this was the first moment I knew.  My visit should not have been, could not have been, a surprise.  Up until that moment, I had wondered if she was struggling with memory issues.  I had probably noticed her “covering”, but had dismissed it as my imagination.

Back then, I was still wrapped up in how her difficulties were affecting me.  I wanted her not to change.  I wanted her to continue to be the mom who could sit and talk with me for hours on end.  I didn’t want to think about losing her to that disease.  Honestly, I don’t remember how I responded to her in that moment when I could no longer deny there was a real problem.  I probably just stared at her in shocked silence and confusion.

Dementia Land is a place where no one in their right mind wants to go.  Mom had a one way ticket, and the rest of us were going to be dragged along kicking and screaming.   Being upset about having to go is normal.  We stare in the face of this impossible situation and say to ourselves, “This can’t be really happening.”  But it happens anyway.

I keep trying to come up with some brilliant closing line, something that will leave you with a sense of hope for the future.  There is a redemption of sorts to come, I promise.  But one thing I had to do to cope with Mom’s illness was to learn to live in a world where things didn’t always have a nice, tidy little ending.  Sometimes there’s just a pause until the next thing happens.

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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. 



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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.

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