"I'm struggling with nothing to do!"

January 26, 2014
 

Mom and cute niece, Ashley 2009
(Steve's daughter)

A little over a week ago I went to my parent's house to spend some time with my Mom and to work on our Photo Organizing Project with my sister Katie -- the task the two of us have taken on where we are going through literally thousands of photos that my Mom has taken throughout the years, and has put into over one hundred albums.  It's a project that might take us a few years to complete (at the rate we are going), but that's ok because we are in no hurry and are having fun in the process.  I love looking through all these priceless photos and traveling down memory lane over and over again!  I know that I definitely got my love of taking photos from my Mom!

There are a few things I observed as I sat there at my parent's kitchen counter, taking photos out of albums and putting them in various piles.  I noticed that my Mom sometimes wanders around their house aimlessly, not knowing what she can or should do.  If there are dishes to do, she will stop at the sink and clean up for a few minutes, but other than that, she really doesn't have any way now of keeping herself busy and entertained.  

My Mom was always a woman on the go . . . going to tennis matches, going to luncheons with friends, making dinners, homemade jam, sweet rolls, volunteering at various places, teaching nursing careers classes, reading books, visiting someone, shopping til she drops, driving kids and grandkids places, preparing talks or lessons for church etc.  This is not the life she is used to with no freedom, nothing to do, and no way to entertain herself.  I could tell that it was bothering her that day.  She even brought it up to me when we went on a walk a little later.  She said to me, "I am really struggling.  I don't have anything to do!"  

Walking selfie with sis, Katie and Mom!

   
It breaks my heart to see her like this and I don't know what to say to her to make her feel better!  What are some activities that people can do at this stage of the disease?  She can't read a book or the newspaper, cook, write a letter, paint, type emails, drive herself places, or do hardly any of the things she has done for the last 50 years! Her ability to play piano is mostly gone, and watching tv shows or movies is no longer fun for her because she doesn't follow what is going on and doesn't seem to hear it very well.  Besides going on walks, I need to find other things that we can do, or that she can do at home.  My older sister Paige just suggested reading short stories with her . . . . and that's not a bad idea!  Any other ideas?  If so, please share! It kills me to watch her pacing her house like that, and to think it is probably what she does every single day!

I also observed that day that my Dad seemed extra mellow and seemingly tired and maybe even a little sad.  No doubt he's tired and I'm sure gets down at times!  He tries to keep his head up and stay positive but I know this is such a difficult time for him!  I don't know quite how to help him more, or how much longer he can go on like this!  I'm sure that he feels the pressure to keep her entertained, and I know that she follows him around for much of the day and talks about crazy ideas all the time like about people stealing her clothes and wanting to go home.  I've watched her do it.  It's almost as if she's also afraid he's going to leave her or something . . . and this is also something that she mentioned on our walk last week.  She said, "I think Mike is going to go back to his wife and I don't know what to do.  What would YOU do?"  Of course I don't know quite how to answer questions like that!  Or she'll make a comment like, "It's so difficult having a boyfriend that is so controlling of me.  I need my freedom!" I honestly don't know whether to laugh or cry sometimes!

The loving and patient Mafi, January 2015    

My last observation during last week's visit was just how kind people can be!  In the few hours that I was hanging out at their house, I watched Mafi and her daughter Salepa, the gals that come in and help for a few hours each day, as they love and serve my Mom and my Dad.  They hug everybody and radiate such love and care.  Yes, it's their job and they are getting paid to help  with my Mom and around the house, but I love how they do their work with seemingly genuine love and concern.  

During those few hours I was over there, two of my parent's neighbors came by bringing treats, showing that they care and were thinking of them.  One cutest neighbor, Liz, came over with a plate of sweet rolls and just said she was just dropping by to say 'hi', and gave my Mom a big fat hug, and my Dad a hug too.  The other neighbor brought a bag of grapefruits . . just because. 

When people serve my parents that way, I feel that they have served me too!  I find that I feel the same happiness as when I see that my kids are being loved and cared for by others.  I so appreciate the kindness of people for my family at this difficult time!  It's amazing what one simple act of kindness can do!  The power of one random act of kindness is amazing and it makes me want to do more for others! 

I am thankful also to my Aunt Sandy (and Uncle Mike too) who take my Mom out every Wednesday for a few hours, and for my parent's good neighbors, ward members and friends who still include them in their social circles and try to help out as much as they can.  There are so many good people in this world, and I am so grateful for that!  Thanks so much for your kindness and love and support!  You lighten our load!         


I found a few fun tidbits from my Mom's journal from the 80's . . .
 
May 1, 1984

"Stephen (my youngest brother who was about 4 at this time) and I went to the zoo today all by ourselves . . in the rain.  We watched the monkeys for 10 whole minutes.  Stephen is very affectionate and stays close by me. 

Mom and the babe of the fam, Steve (as a teen in the 90's!)

Today the phone rang and Stephen answered and said, "My Mom is on the toilet."  I laughed all the way to the toilet . . oops I mean the telephone, wondering who was on the other end.  She was laughing too and thank goodness it was Margo Cook." (neighbor two houses down their street)

Just a note to all of you kids in case your read this someday . . . I LOVE YOU . . remember that!  The church is true -- remember that too!"

November 9, 1984

We had a "poor taste" party at Karen and Leon P.'s house with our dinner group and it was hilarious!  We all got an invitation on scratch paper that had her grocery list on the side -- tampax, jello etc.  When we arrived, the Petersons were not even there -- they were late.  And there was a large glob of dog poo on the front porch.  The Larsens brought all of their kids, Liz H. wore a white sheer blouse with a black bra, I wore a tennis dress with my garments on and wedge tennis shoes, and then I put ketchup on the back of my dress, and Mike wore a tux with his fly open.  For dinner we had tuna casserole, generic green beans and jello, and a twinkie with strawberries and whip cream was our dessert.  We went swimming in their pool, after watching deer hunt slides and home movies.  (What a great idea!  I'm sure there was a lot of laughter that night!) 


February 8, 1985
 
Stephen, age 4.75, has had a bad month . . . a broken collar bone, cut cheek from falling off his scooter, and a cut eye.  He looks like a battered child and I will probably be reported for child abuse.  Since Michael (my other brother) was responsible  indirectly for all of Stephen's injuries, he took Stephen to school for show and tell.  It really was funny! 

(Reading these journals reminds me of just how full a life my Mom has lived!  She was one busy woman who lived a life of service to us, her kids, and to many many others!  I love to read about her joys, her normal frustrations and her strong testimony!  She is one great lady and I am lucky to have her as my great role model and Mom!)