Screams

At the home someone is often screaming.  To me it seems to be one of the effects of Alzheimer's disease.  Mother has developed a hypersensitivity to many things.  This reaction began early on in the disease when we first took her to the doctor.  When she had to have a blood test, she cried like a small child and turned her head screaming, "You're killing me!"  Now, I understand that many of us have this reaction to giving any amount of blood, but this was not her usual response. 

Screaming became part of the daily routine when she had to take a shower.  Neglect of personal hygiene is also an early effect of the disease, and getting Mother to shower was a struggle.  Of course being naked in front of your children is uncomfortable, and she would scream, "Don't look!  Don't look."  We got very good at scrubbing her or telling her what to wash next with our eyes fixed on a point just over her head.

As the disease progresses, she screams at any touch on some days.  That might be helping her wash her hands or changing her socks or brushing her hair.  Sometimes just trying to help her floss her teeth brings the staff to check on her as she screams bloody murder.

The fact is that as gentle as you want to be, as much as you tell her what you are going to do, as much as you know you are not hurting her, she will still scream. 

Last week as I left the home, I heard wild screams coming from the shower room.  Someone else had to be bathed, and it was their turn to scream.  It is part of the disease, and it puts me at great dis-ease.

Sitting in the Sunshine

Today the weather was so nice.  I even got Mother to go outside for a little while.  She was such an outdoor person before Alzheimer's.  She loved the woods and sitting on her porch.  Now, most of the time, she is afraid and overwhelmed to go outside.  Today was a good day, and we put on sunglasses and went out.  She wanted to know if she looked like "Joe Cool" in her sunglasses.  She also likes to think of herself as one of the Blues Brothers when she wears sunglasses.  So we jived down the hall and found the chairs in the place she likes to sit when she will go out. 

We just sat.  I tried to talk to her, but conversation was difficult today.  She wants to participate, but her thoughts are so jumbled.  She would just say my name and smile or try to make a polite response.  Mostly she just smiled.  So I smiled back and held her hand and we sat in the sunshine. 

Sometimes just being a presence with one another is the best we can get.  I am grateful for that.

Conversation

Mother is far enough into Alzheimer's that she sometimes makes no sense at all, but she believes she does.  Today was one of those days.  She was so happy, and she talked for 30 minutes solid and said not one thing that made any sense.  She talked about her husband and her brother and her mother-in-law and other family members.  In her mind there had been a fight because of a "mistake" the day before. Sometimes she said it was her mistake, and other times it was her brother, her husband or her mother-in-law who had made the mistake.  She kept trying to tell me about "that thing in the back yard" and then she rambled on about a spool of thread. "But everything is hugs and kisses now," she would say.  Then it would all begin again.  Occasionally she would get distracted and say, "I'll finish this later."  In 5 seconds she would be telling the tale again. If she was mad at someone in her story, she would shake her fist.  If she thought it was funny, she would slap her knee.

These days are difficult, because the cadence and tone she uses is her old self, but the words are just strung together.  I wonder what kind of jumble is going on in her mind because to her it was a coherent story.  She would wait for a response from me or just laugh at what she had said.  It was exhausting trying to give a satisfactory response. 

I watched her and I could see her face express a whole range of emotions. To her it was a story, and she wanted to share it.  Perhaps that is all we can be is a presence to share an experience even if we don't understand or the story makes no sense.  The important part is to be there and share it because at that moment it was so real to her, and her need was to tell and have someone share her story.

Early Warnings

Alzheimer's patients experience a long, slow decline in mental function.  For Mother, we first noticed that she could not remember anything associated with a date unless she wrote it down.  For a time, her calendar was covered with little notes.  We found notes written on sticky notes, backs of envelopes, scraps of paper.  This helped her for a while.  She even commented that she needed to write it down to remember it.  Eventually, she could not manage the calendar, and we even found that she was using two different ones. 

Because the disease manifests differently in every person, it is difficult to judge how the disease might progress.  For Mother, it didn't take long to go from notes on the the calendar to not remembering at all.  We had to call her several times as we drove to visit.  She would forget that we were coming.  I always called as I drove up the lane because I didn't want her to get scared when she saw a car coming.  I would have her go to the window and watch, and I would roll down the window and wave while I talked to her.  She stopped cooking too.  The saddest time for me was watching her struggle to figure out how to use the bread maker.  She could not even make sense of the directions, so we just put it away.

That is one of the greatest griefs for me.  To see my bright, intelligent mother so reduced.  Most of the time now she is beyond that frustration.  But on days where clarity is sharp, she still grieves for her own loss of memory.  She used to ask why this was happening to her.  Why indeed. 

Dorian Gray

I'm thinking today of the story of Dorian Gray.  You know, the young man who sells his soul for eternal youth while his portrait ages in the attic.  Sometimes I think of Alzheimer's as the antithesis of Dorian Gray.  The portrait I have of Mother in the attic of my mind is of the vital, whole person she was.  She will not change.  But the person I see before me is ravaged by this disease.  She loses her mind a bit at a time, and the horrible part is when she is aware of it.  She tells us that she is dying.  When asked what she means, she says that it is like sailing out into a fog or that she feels like she is sinking and going away.  No wonder she cries.  All we can do is hold her and rock her and be there with her.

Most of the time she is unaware.  That is better for her, but then her behaviors deteriorate.  Yesterday we were told she is now banned from the community concerts at her home.  She is inappropriate with the male residents and the performers.  The music gets her stirred up.  She dances and laughs and has a wonderful time.  She likes to flirt, and she is funny.  But then she gets inappropriate and things get out of hand. 

Maybe my analogy should be more of Jekyll and Hyde.  The one side of her kind and sensitive and civil.  The other out of control like a tyrant toddler.  She has taken to making her room mate cry.  She knows just one or two words that set the woman off, so she says them just to see her cry.  That is not my mother.  She was compassionate and had no tolerance for that kind of behavior.  Where has my mother gone?  This disease has stolen her.

Beginnings

About six years ago we noticed Mother was beginning to show some memory loss.  At first, we thought it was just the usual forgetfulness that goes with aging.  But very soon we knew that it was more than that; it was Alzheimers.  And so began this journey that is sometimes horrifying, sometimes sweet and most of the time difficult.

I look back now and realize that although each step of the process is difficult and painful, the difficulty does not necessarily increase as the disease progresses; it just changes.  Each step of the journey is like stepping into an unknown.  The only thing I can compare it to is childbirth or raising children  You can read books, watch videos, take classes, find a support group or talk to others, but until you go through it, you don't really know what the experience is like.  You just walk into the experience and do the best you can at that moment.  You take one day at a time. 

As bad as this disease it, and it is terrible, you can learn from it.  I've learned a great deal about my mother as I have watched the disease progress.  I have also learned about myself.  And to me, even more interesting, I have learned more about my family and how it works.

This blog may jump from one topic to another as I talk about my past experiences and about what I am experiencing now.  I just need to talk about it, and invite you along for the conversation.