The Living Dead

I have a grandson who is into zombies.  He knows all about them and often relates "information" about zombie behavior.  He knows it is fiction, but for some reason he and many others find the zombie world fascinating.  I do not.

To me the world of the living dead is the nursing home.  Today Mother insisted that she was dead.  No amount of logic or reason could convince her that she was alive.  "Did the undertaker make my face look good?" she asked.  What could I say?  "Yes, you look lovely."  She was satisfied that she looked good, but she still instisted that she was dead.  And perhaps she is right.  She and the other residents are living a kind of half life.  They are not physically dead, but like zombies they roam the halls with their ravaged minds and bodies.  It is twilight living.  Neither here nor in the beyond.  They live, but they are dead to the world.

World and local events mean nothing.  People come and go, but often who those people are depends on the momentary workings of the dementia mind.  Today I was daughter, mother and grandmother to Mother at various points of the visit.  Her world shifts and sways and her confusion grows.  Zombie? No, but part of the living dead - sometimes.  But there is no need for violence or horror either.  Only hugs and kisses, singing and praying, photos and remembrances can restore life. 

Did the undertaker do a good job on her face?  It mattered to Mother today, and just knowing that she was lovely to me was all it took to make her just a bit more alive.

Lost

Mother is lost in the fog of her ever diminishing memory.  Her focus of thought is becoming ever more narrow.  Yesterday as we sat in the living area by the front door watching people come and go, Mother said she wanted to talk about the family.  I asked her to name we girls, and she could.  I asked about her brothers, and she named them.  But the names of her sister-in-laws, her grandchildren, her nieces escaped her.  Even when I told her who they were, she just looked at me like she was very unsure of those names. She seemed to even be unsure about the relationships.  It was if she knew she has grandchildren and great-grandchildren, but she doesn't know how many or who they are.  The fog is thick in her mind.

It is impossible to "visit" with her now.  Even relating the events of the day or talking about the garden or the weather brings no real response.  She used to be able to make some kind of comment even if she had no idea about the topic.  Now there is nothing.  No comments.  No indication that what I have said has even registered with her.  More and more she speaks randomly as her brain fires here and there.  Her poor fog shrouded mind is lost not just to us but to her.  She looks out from frightened eyes and says, "I'm dying."  She is, and it is a slow, horrible death.

Laundry

For two and a half years I've been doing Mother's laundry.  As my husband keeps reminding me, Mother pays for that to be done.  But in washing her laundry, I've felt like I was helping to take care of her.  Her clothes have also lasted longer and been nicer since I don't use such harsh detergents to wash  and super high heat to dry her clothes.  I've been doing 3 to 5 loads of her wash a week.  Most of the time these were small loads, but because of her incontinence, there are often several outfits a day.

While I was gone the home did her laundry, and I've decided to continue to let them do this.  Here is the strange part.  I feel such freedom in letting someone else do this chore.  I thought it might make me feel guilty because Mother often thanked me for doing her laundry, but this is not the case.  No guilt.  I feel like I can time my visits around my schedule rather than around the laundry.  What freedom to no longer be a washing drudge.

It seems silly, but this small change has made a difference in my approach to Mother.  This small change has made me acknowledge the bigger changes in Mother.  I am no longer trying to hold off the inevitable decline into complete loss.  Doing the laundry was a symbolic act on my part, as if I could keep Mother from slipping away behind piles of laundry and detergent. I can now say that instead of trying to keep some normalcy for Mother, I can accept her limited life.  The decline is so much more pronounced.  We are now at the stage where we just try to make her moments bright.  And I can do this without a bag of laundry in my hand.

Little Things

I've been away for a week.  When I have to be out of town, I usually worry about Mother.  This time, other family members checked on her, and as terrible as it sounds, she has declined so much that I knew she would have no idea I had been gone.  She didn't.  She looked at me when I came into the room, and it was just like every other day that I walk in.  It is true that with Alzheimer's every day is just like every other. But even so, Mother finds joy in the little things that appear every day.

More and more Mother sleeps or lies in bed and looks out the window.  I have hung a basket of petunias outside her window so that she can look at them, and today she was delighted to see some bees at the flowers.  The little things of life are what bring her so much pleasure.  A cup of fresh blueberries, strawberry ice cream, a coke for "happy hour," or a bee outside her window.  Her world is very small, and perhaps I too should take more pleasure in the small delights of life.  Even in her dementia Mother is teaching lessons on life if I pay attention and see what is just outside the window.

That Which We Have Greatly Feared

Mother had a friend who when something bad happened would say, "That which we have greatly feared has come upon us."  That is now the case with Mother.  Some people with Alzheimer's tend to sexualize everything.  That is the case for Mother.  She would just die of shame if she knew some of the things she does.  She flirts with any man, which is not too bad, but sometimes her behavior goes way beyond anything that is socially acceptable.  That happened over the weekend.  There were repairmen in the Alzheimer's unit, and Mother kept taking her clothes off in front of them.  The staff had a terrible time getting her dressed and redirected.  She did it three times.

I hate getting reports like that.  What can I do?  Nothing.  What can the doctor do about it?  Nothing really.  When she gets like that, Mother has absolutely no control of herself.  She has no idea that what she is doing is wrong and makes everyone uncomfortable.  At that point her primitive brain is all that is working.  And it is primitive.

Today was not much better.  She was staying dressed, but she couldn't distinguish between yes and no.  It took me a moment to figure out what she wanted.  In the mean time, she yelled and hit and became distressed.  Then she wanted a hug and a kiss.  Her emotions were all over the board today, and she had a wild look to her eyes.  I could only stay with her for about 20 minutes today.  It was too hard.  The Mother I knew was not present. 

On days like this, my soul feels like it is under a rubble of rock.  I think of what Mother's friend used to say, and I know that for Mother one of her greatest fears has come upon her. And there is nothing to be done.

Tell Me What I Feel

Mother is beginning to lose the facility to name her emotions or to recognize what she is feeling.  It is confusing for her, and I find it terrifying.  It means that one more piece of her is failing. 

She had enjoyed a program with music and some dancers at the home, and I arrived just as it was concluding.  As we went to her room, she was so excited, and told me she had had such a good time.  Then she asked, "Did I make a fool of myself?"  She is still aware that she gets up and dances and sings with any music that is played.  I told her she had been perfect.  Suddenly, she was crying and saying that the people had been mean to her and she had had a terrible time.  Where did that come from?  She had been so happy and had enjoyed herself.  I had to re-focus her to what a good time it had been.  I named what she did and how she felt.  She finally smiled again.  Such confused feelings. 

I can't imagine what she must feel like.  She really didn't know what she had experienced or how she felt within just a few minutes.  I had to name her emotion for her and tell her what she felt.  It is pitiful for her to be so infant like.  A baby knows she feels something, but she can't name it.  Mother is becoming like that, but her emotions are so mercurial that I try to name only positive things for her and keep her focused on happiness.  It is difficult.  I try to leave her happy, but often I feel like I have been emotionally beaten down.  I drive away crying and have to remind myself to remember the happy times and focus on the happiness.

Do Not Go Gentle

"Do not go gentle into that good night.
Rage, rage against the dying of the light."  Dylan Thomas

It has been difficult to think about writing in the last few days.  The lines from Dylan Thomas keep coming to my mind.  His poem deals with approaching death, and he suggests that death should be fought.  For me, as I think about Mother, I cannot fight against physical death, but I find myself raging against the dying light of lucidity. 

I rage against the dying of the light of losing recognition.  I rage against the dying light of not distinguishing one day from another.  I rage against the dying light of losing control one's bodily functions.  I rage against the dying light of not being able to wash one's face.  I rage against the dying light of knowing where you are.

I feel like holding Mother tight and not letting go.  She is going gentle "into that good night" and I rage against it.  I want to kick and scream and shout "you can't have her!"  But the disease progresses and all the rage and love and care in the world can't stop it.   I am watching her slowly sink away from us into a dark, deep hole.  But for all my raging she goes. And it is not gentle.  It is painful.  I weep. The dying light continues to deepen.