Sharing the Journey

Fifty-eight years ago, (wow, that sounds like a big number) there was a raging snowstorm in the areas surrounding Camden and Rome, New York.  A young man was carefully navigating the snowy roads with his wife beside him.  She was in labor and they were on the way to the hospital in Rome.  The snow was blinding but the urgency forced them on.  Rounding a bend in the road, they saw a man waving to them next to his car that had slid off the road and into the ditch.  Being the caring and gracious person that he was, that young man stopped his car.  Upon hearing that the young woman was in labor, the man in need waved them on.  He would flag someone else down.

The young couple arrived at the hospital just in time.  Their third born child was anxious to get into the world and did so in a speedy fashion.  But, alas, this story is not about that child but about the mother that bore that child 58 years ago today.  A lot can and does happen in the span of 58 years. 

That woman who so easily carried that child and birthed her so quickly; who raised four children, served as a teacher, spiritual advisor, friend, wife, choir director, librarian; who created clothing, blankets, dabbled in all sorts of crafting; who served others in a foreign land while battling various and sundry obstacles; who obtained her Masters Degree while working a full time job when her last two children were in high school…a smart, strong, capable, talented woman now lives in a world of dementia.

Dementia –

    A chronic or persistent disorder of the mental processes caused by brain disease or injury and marked by memory disorders, personality changes and impaired reasoning.

I am that daughter that was born 58 years ago.  I used to half-jokingly say to my Dad that I knew why I had been born.  So that I could take care of them when they got old.  God gave me to them and equipped me to care for them in their old age.  I wouldn’t trade this responsibility for anything but the ache in my heart is deep.  For all of us, watching this process is so difficult.

As I look back over the past few years, I can now see how several incidents were precursors to where Mom’s mind is now.  It’s a puzzling, this thing called dementia.  One can seem perfectly clear minded one minute and in the next moment loved ones are left with their heads spinning – wondering as to whom in the world this person is and what did they do with our mother!  Another puzzling thing is how a person can seem to draw upon some well of hidden resources to hide their dementia from infrequent visitors and friends.  This often leaves me looking like I’m making things up when I share the situation with someone.   Mom has been in the nursing home, living life daily with lots of people who love her and are trained to deal with this.  As we watch together the dramatic changes that have taken place over the past few months, it helps to know that the staff sees and understands what we, as a family, are experiencing.

This once sweet lady has begun to snap at people and make accusations.  She frequently indicates that she doesn’t know where she will sleep at night.  She often “misplaces” her room.  She has been reading the same book for the last year ½.  At Christmas time she expressed confusion about what it was all about.  She sometimes complains that she has no family around and says, “I don’t know where my daughter is”.  The truth is that she has more family around her right now than she had for many years of her life after her children had grown and left home.

One thing that we have all been grateful for…Mom still knows who we are.   And a couple of weeks ago, she got out her Bible, promptly found the book of Psalms and read the 23^rd Psalm in its entirety to Rosie and Jim.  It has become more normal for her to not be able to find a scripture reference and to read the same line over and over.

Thanksgiving, 2010 seemed to begin a bit of a more rapid downward spiral for Mom’s mental clarity.  More than ever, she became dependent on others for her personal care.  She became ill with an infection and her body temperature spiked dangerously high.  Rosie and I took turns sitting with her and staying close by her side.  When the fever passed, she “kicked us out”.  She’d had enough coddling, I believe, and said that we should go home.  No sooner had we left the facility than she was up and going to activities.  This was so much a part of who she has always been.  One doesn’t lie around in bed and waste the day away.  Pull yourself up by your bootstraps and get to it, so to speak!  But since that episode, her mental cognizance is in question more and more, leaving me to wonder how much that fever pushed her further into the dementia abyss.

Having recognized the deterioration, the staff felt it wise to begin some cognitive therapy.  I received a phone call from the speech therapist asking for my help.  She very gently informed me that “Mrs. Blann has a very tactful way to letting me know that she doesn’t want anything to do with my help”.  Mom didn’t care to practice what day or month it was.  But the therapist noted how much Mom wanted to talk about her family.  She wisely decided to incorporate family into her therapy using a plethora of photos that we have in her room either on the wall or in photo albums.  But, even using family as therapy, her mind tires easily in an effort to bring things into focus.  She also noted that Mom seemed to be overwhelmed with the number of items on her meal tray.  Mom has been eating very little and losing some weight.  The plan was set in place to minimize the food and drink choices and simplify the tray and that seems to be helping.  She does like her ice cream, though!

She has fallen twice in the past week, seemingly just slipping to her bottom on the floor when her feet went out from under her.  Once late at night and another time during the day.  Fortunately, she was not injured other than some understandable achiness.  She was upset because she didn’t remember the first fall at all and in the process of assessment of her possible injuries, she became very agitated and tearful.  Constant assurance that she has done nothing wrong, and giving her possible reasons for her fall, help to calm those emotions.  It is so ingrained in my head to tell the truth at all times but where dementia is concerned, I strongly believe that to say what you have to bring comfort to that person.  The mind of that person isn’t rooted in reality so you play a game – you constantly play a game, of sorts – finding the things to say that calm, reassure, refocus and comfort your loved one.  You don’t insist on clarifying the facts of something they tell you unless it is in their best interest.  All you accomplish with that is to remind them that they are confused.

Because of the falls, the physical therapy staff felt that it was in Mom’s best interest to have some strengthening exercises.  When they came to do the assessment and make a plan of treatment, she refused.  Again I received a phone call asking for my help.

(As an aside, sometime back, Mom introduced me to a staff member as being the one who is in charge of her.  Oh, and I have also been introduced in the past as her mother.)  The staff has learned that if you want to accomplish a task with my Mom that they need to call me.  Such power!  I went in to talk to Mom.  Reminding her gently about her falls and indicating that I didn’t want her to have a serious fall, I explained about the staff wanting to do some special exercise to help her be more stable.  I asked if she would please do that for her family because we wanted to keep her around as long as we could.  She readily agreed.  Then the head of physical therapy arrived in her room with the therapist who would be working with her and asked her again.  She replied very positively and agreeably.  Amazing how this works!

I am so very thankful that Rosie and Jim moved to Florida in the Fall of 2010.  It has been such a help to be able to share the load with my sister.  Richard has been working in the area for the past several months and he has been able to interact with Mom much more also and she loves getting to see her “baby boy”.  Paul was able to come in November to celebrate Mom’s 90^th birthday so we have a wonderful memory of all the “kids” together with Mom on that occasion.  As we were sitting at the table eating Mom’s birthday dinner with family and friends, the doorbell rang.  We answered the door and there was a distinguished looking gentleman who walked in and introduced himself when we opened the door.  None of us knew him and me, in my “tactful”, straightforward way, laid my hand on his arm and asked, “who are you?”  I asked if he’d heard the joke about the preacher who went to the wrong church for a funeral when we realized that he had the wrong house for a function he was to be attending in our neighborhood.  I told him we were celebrating my Mom’s 90^th birthday and he walked over and shook her hand.  Poor thing, she wondered why she didn’t know who he was.   He laughed at my joke about the preacher and said there was a reason why that amused him.  He reached in his wallet to show me his clergy I.D. and then pronounced a blessing on our household and left to go to the right house for his function.  We all felt like we had experienced a divine appointment.  A reminder that God is in control, that He loves us and is with us through all of life’s struggles and battles.  And for that, I am extremely thankful!