The LONG Weekend

Many comments have been made lately by the staff at the nursing home regarding the fact that Mom seems to be going to another level of dementia…sinking a little deeper into a place of confusion.  The events of yesterday surely stand as proof of that fact.  Shortly after her lunchtime she called to tell me that she was upset.  She had finished eating her lunch with her roommate and her roommate had not eaten well and someone blamed Mom for this.  Understanding how my Mom’s mind works, I was sure that whatever comment was made (from which she construed this idea) would have been in no way seriously implying that Mom was at fault.  But she took it that way and was seriously upset and tearful and needing to be loved on by her family.  Earlier in the week the decision had been made to move Mom away from her longstanding tablemate because it seemed that her tablemate’s negative comments were affecting Mom’s eating habits (or, plainly speaking, lack of eating).  Since I had been “lucky” enough to be bitten on my eyelid by some unknown creature, I was not able to immediately meet her need to be loved on in person as I had an appointment to see my eye doctor first.  (This is an important part of the story, really…you’ll see.)  Rosie and Jim were out and able to stop by to check in on her. 

After I finished up at the eye doctor I headed to the nursing home as I had promised her I would.  She was playing Bingo, a favorite pastime of the residents.  She no longer is able to play with the clarity that she did not too many months ago.  She misses  some of the numbers and also looks underneath the chips to check if she’s already placed a chip on the number just called.  But she’s still happy playing and that’s the important part.  I told her that I needed to go get my medicine for my eye.  She suggested that she could go with me and that’s what we did.  While we were out together she attempted to tell me what had happened.  The bottom line is that she is so afraid of hurting someone’s feelings that she gets emotionally caught in the middle and is easily hurt.  Understanding that Mom isn’t the only one with dementia or dealing with serious age related issues, one can see how these interactions between residents can snowball into little dramas.  It’s not a lot different from the type of drama one might find within a group of junior-high girlfriends.  I told Mom that it wasn’t her job to keep everyone happy and that the only person’s happiness she had any control over was her own.  She was quiet for a bit and then said, “You’ve given me food for thought”.

We were eating dinner last night when the phone rang.  Mom was calling again.  She said, “Do you know what’s happening tonight?” 

“Uh, no, what do you mean, what’s happening?”

 “There’s something happening tonight, do you know what it is?”  “Uh, you’re playing bingo tonight?”

 “There’s something about the moon”.

 “Oh, it’s a full moon tonight.”

 “Oh, is it really?”

“Yes, it’s a full moon.  I just went out and looked.  And you’re going to play bingo tonight.  Is that why you are calling, because it will be late when you get done?  So you can talk to me before?”

“Well, they said something was happening tonight.”

“They told you it was a full moon tonight?  It is, I just looked.”

“Well then I need to go and see if I can see it.”

Two hours later the phone rang again.  Mom was in tears.  She was trying to tell me something about it being the weekend and there would be nothing for them but food and she wouldn’t be able to see her family and there would be nothing to do and she wasn’t sure that she could handle it.  In trying to calm her down I reminded her that I had been with her, taken her out, that she had seen Rosie and Jim and that it wasn’t the weekend yet.  I reminded her also that she was with us on Sundays, etc.  She responded, “Fine, if you don’t want me, I’ll just hang up.”  I continued to talk with her to try to calm her down.  She communicated enough frustration and emotional pain that I decided I needed to go check on her.  Rosie and I left the house about 9:30 pm to head up to the nursing home.  I had some concerns from what she said that made me call the unit manager at home to ask her to check with the staff before I arrived and see what they could tell her about what might have taken place.  It was at this time that she told me something that she had not had a chance to tell me before.  Earlier in the day, Mom’s CNA had found her chewing on her hearing aid twice!  My immediate response was “WOW!”  Daddy had done the same thing within the last months of his life.  She also told me that the signs were obvious that Mom’s dementia was getting worse.

What we discovered after much sleuthing with the CNA, the nurse and Mom was interesting.  Mom had been so confused after Bingo that she couldn’t find her room, didn’t know where she belonged, didn’t recognize her pajamas as hers when the CNA prepared her for bed, (said she had never seen them before), didn’t know she had dentures in her mouth to remove, didn’t know how to help prepare herself for her shower, etc., etc. 

Still tearful about the weekend and the anxiety related to that, I struggled to get to the bottom of that.  Amazingly enough, I did!  Monday is Presidents Day.  It’s a LONG weekend.  That’s all she heard from the conversation discussing President’s Day…it’s a LONG weekend.  Somehow, from that, she got all the fears mentioned above.  I told her over and over that it was only a long weekend for students and people who work at banks and the post office.  Nothing would be different at her home there.  The activities remained the same, the staff would all be there and there would be not difference in her routine because of the LONG weekend.  How she got to that place in her mind is a mystery.  And how she manages to remember my phone number and how to call me is a mystery.  In the midst of all of the confusing conversation at her bedside last night she stopped and asked, “how is your eye?”

Go figure!!  I sure don’t understand it!   J

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!