Best of Life

We tend to obsess about so many things in life.  We focus on those big items that tend to weight us down:  bills, problems at work, winning a game, deadlines, weeds in the garden, etc.  But what I have learned from Mother is that the very small things in life can mean the most.

A clean face can bring sheer happiness.  Mother loves to have her face washed.  After she brushes her teeth I warm the washcloth in the hot water and gently wipe away the stress from her face.  She always asks me to do her eyes. Gently, gently I clean the sleep from her eyes.  Gently, gently I wipe her cheeks and forehead.  She tilts her face up and makes a low mmmmmm in pleasure.  Three times we go through the process and then pat dry with a towel.  She always says, "Thank you, mama."

She returns to her bed, and I apply a thin layer of baby oil on her face.  She has dry patchy pre-cancer on her skin, and the baby oil softens her skin.  She say, "On my nose, on my cheek."  Then we move to her arms and hands gently massaging her thin, dry skin.  "Oh that is so nice, so nice."  The sweet smell envelopes her.

Then it is time for a Coke.  "Do you have a Coke?" she asks, and I make a trip to the machine for a Coke.  She sips it from the can using a straw.  "Hmmmm!" followed by a big belch.  She smiles.  I mean really, can life get any better!

"I'll Protect You"

The power of human touch and consolation never ceases to amaze me.  In the smallest ways, even those with dementia can help each other.  Today I found Mother in the lounge watching a movie with a male resident who has somewhat better cognition than Mother has.  As usual, when Mother saw me she called my name and grabbed my hand.  I held her hand, and we all watched the movie.  It was a film about a storm at sea and two boats were being tossed on the waves.  This frightened Mother, and she began howling and crying, "I'm going to die."  I got up and changed the channel, but the man reached over and patted Mother's knee and said, "Don't cry, I'll protect you from the bad things."  Mother looked at him and said, "You'll protect me?"  He said yes, and she was fine. 

He had just patted her knee like you would do for a frightened child.  He smiled and was calm and she responded.  It was so sweet, and so human.  One person reaching out to comfort another and that person accepting the comfort.  That man can not even take care of himself, but he was willing to reach out and offer to protect.  That is being truly human.  How often do we try to avoid the pain of others.  How often do we ignore the terror that others feel.  All we need to do is pat someones knee-even metaphorically- to bring comfort.  And anyone can do it.  Anyone can offer comfort.

Lonesome Valley

Mother appeared to be sleeping.  She was curled on her side and covered with her dusty blue comforter.  Her eyelids fluttered and she saw me.  It was just a stare for a few seconds, and then she said my name.  I sat beside her and stroked her short gray hair.  I always think how much she hated "old ladies with short hair."  But cutting her hair was just another loss due to her dementia.  Her longer hair became tangled and unruly.  Now, while stroking her sweet head she said, " I'm scared.  Don't leave me.  I'm afraid to die.  I'm dying."  She looked so defeated and scared.  What could I say?  I am utterly helpless.  I can't ease her disease.  I can only hold her hand and stroke her head. 

I assured her that she would live today and tonight and tomorrow. 

"Really?"

"Yes, you will live today, and tonight and tomorrow."

It was enough.  She asked me my name.  She needed to be sure that I was who she thought I was.  She closed her eyes.  I sat with her.

There is an old song that says, " You've got to walk this lonesome valley.  You've got to walk it by yourself. Oh, nobody else can walk it for you.  You have to walk it by yourself."  Mother always loved that song, and this is her lonesome valley. But somehow I think we can walk in the shadows along with her.  It is not our journey, but we watch her journey and hold her hand and stroke her hair through the lonesome valley.

And Now This

There are all kinds of degradation with Alzheimer's.  Mother faces them daily and is mostly unaware of them.  But sometimes she knows that something is wrong and she is sad.  That is how I found her today.  She was very quiet and would hardly talk as she lay in bed curled up and staring out the window.  I asked if she was ok and she said yes, but as I pressed her she said, "I did something wrong and got in trouble.  They hurt my feelings."  That was all she could tell me, and so we talked about past times.  She laughed and got caught up in the story line making up a plausible story to go along with the real past event.

But now this.  A phone call from the home.  As often is the case, Mother can't remember where her room or her bed is.  She will crawl into any bed she thinks is hers.  I often have to go down the hall checking the beds to find her.  Today she had laid down in her roommates' bed.  The roommate got upset and spanked Mother with a shoe.  Spanked her hard enough to leave a welt on Mother's rear end.  The roommate was moved immediately.  But that is the problem with dementia.  People no longer have control over their actions and responses. 

Mother has been on the giving end of such things, but not to the degree of hurting someone.  She has thrown water on people, verbally threatened others and thrown things.  It just grieves me to know that someone hit her and hit her hard.  It also breaks my heart that she thought she had done something wrong but had no idea what it was.  At some core level she knew life was out of whack, but she couldn't tell me what it was.

I hate this disease and what it does.  The loss of control of ones body and mind is bad enough, but it also causes the victims to lash out and to sometimes become violent.  Now Mother has had to endure a physical attack, and I couldn't protect her from it.  Tomorrow she will not remember it at all, but I will always remember and the bruise will be on my heart for a long time. 

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.