All independence lost!

June 19, 2014

My Mom was always such an independent woman, with a very full social schedule and busy life of her own!  Before mean old Alzheimer's came into her life, she had much of the control over the money spent at their house, and had complete control over her own schedule, what she wore, when she had her hair done, how she did her hair, what she would make for dinner, when she went to the grocery store or went out to lunch with her friends.  My Dad always worked long hours and the two of them mainly lived their separate, independent lives on the weekdays, and worked and hung out together nights and weekends. 

Things have so changed!

I've thought a lot lately about the complete turn around my Mom's life has taken over the last 10 years.  Sadly, after almost 50 years of marriage, she has gradually lost all independence she ever had!  Can you imagine how hard that would be to all of the sudden not be able to go buy a new item of clothing when you want to?  Or to not be able to drive yourself somewhere when you want or need to?  Or to not understand why your friends aren't calling you anymore to go to lunch or play tennis?  Or to not be able to read a book or paint or write in your journal anymore?  Or to not have any say with your social calendar?  That is now my Mom's life . . . totally being run by other people, with very little say in her daily activities, and little ability to entertain herself. I thought she was losing all knowledge of this fact, but apparently she's still aware to some degree.  

Hiking on the Red Rock Trail in Draper, June 2014

 Yesterday I (and my 13 year old son) met both my Mom and Dad for lunch.  When they arrived at the restaurant, my Mom's eyes were red and I could tell she had been crying.  "What happened?" I asked her. "What's the matter?" She kept pointing at my Dad and wasn't able to talk about it right then.  I quickly changed the subject to happier topics and never did find out what happened during their conversation in the car on their way there.  On our hike a few hours later though, with just the two of us, I was surprised to find that she remembered and brought up the incident again.  She tried to explain her frustration and sadness to me, but it didn't make a lot of sense.  She really couldn't remember any of the details of what caused her pain, sadness and confusion, but I think it had something to do her friends and this lack of independence in her life.  Her life is no longer hers, and she doesn't understand that.  She is at the mercy of all of us, and has very little choices in life anymore! 
 
"I need to go get a job and earn my own money," is a common topic of conversation with her lately.    "Maybe I could work in the yard to make a few dollars" or "I would love to go get a job at the hospital again."  "I have absolutely no money anymore, and can never buy what I want."   

"I'm sure Dad would buy you what you want," I tell her.  

"No, I don't think so," she says. 

My Dad says my Mom is progressing to the point where he really can't leave her home alone anymore.  "Someone should always be with her."  She is getting more and more confused about who people are.  People she has known for many decades are slowly becoming strangers to her . . . and even family.   

On our hike, we were talking about old neighbors and what they are up to now.  She asked, "How do you know them?  Did you live by them too?"  She couldn't believe that I could remember old neighbors names and details about their life, and couldn't quite get what my connection was to them!  Little does she know, I can even remember most of their phone numbers still!  I guess I'm sort of like a person with Alzheimer's.  I remember details about my childhood, and even phone numbers, but sometimes can't even remember what I did earlier in the day.  Should I be scared?  Nah!  I think I'm ok!  

Hoping!  


Flashback to 4.5 years ago . . .

February 14, 2010

We didn't receive Valentine’s cards in the mail from my Mom this year . . . the first time in many years! :(       

Here are some common phrases I've heard my Mom say lately:

“Please remember me when I was normal!”  She has said this many times, but just recently said it again at a Sunday dinner.

“I think this disease has been good for me . . . I have become more empathetic and have gained more understanding of people with trials in their life . . . this life is sure interesting!"

"I have lived a good, long life!”

Cousin Mary, Aunt Sandy, Mom and Great Aunt Betty, Spring 2010

She also recently told me, “You know I’m not keeping it a secret anymore . . . I’ve started telling people (although they’ve known for years) that I have Alzheimers . . . . but now people treat me differently . . like a woman without a brain.”

“Like how do they treat you differently?” I asked her.

“Like I suggest a good book for book club and they don’t listen to me . . . but then someone else will suggest something and they’re all over it.” 

I don’t like it when she says these things because it reminds me how aware she really is and that she knows she’s slowly dying . . and that makes me sad!  It’s all I can do to hold it together when she says these things.

Alzheimer's stinks!

I love butterflies!

June 15, 2014

At a church activity a few months ago, we as women got together and had a service night!  We all thought of a service that we could give away, wrote it down on a piece of paper, and then took turns drawing out what service we would receive.  I just so happened to get "a guided, hiking tour in Corner Canyon", meaning that my neighbor, Janet, who is a big biker and hiker, said she would show me a new hike up in the mountains near my home.  This was perfect!  I really was very excited because I have hiked in these mountains near my house a handful of times, but had never dared venture out and go the other direction.  I have always done the same old hike, but have been told there are many other paths to be explored! Janet told me that she would show me around up there!  

Clark's Trail up Corner Canyon, June 2014

So, about a week ago, I got a call from my good neighbor Janet, and the next day we were off on this adventure!  I had previously planned to go hiking with my Mom and Dad that same morning, but unfortunately my Dad had injured his foot while playing tennis and thought he'd better rest it, so this was the perfect day for my "guided tour"!  And what made it even more great was that my Dad drove my Mom out to go hiking with us that morning!  My Mom is happiest when she is outside in nature and I love to see her happy!  The weather was perfect and we had a great old time!  Janet was so kind and patient with my Mom who kept bringing up how the mountain so reminded her of the gully that was in her backyard growing up. (My Mom's memories of her childhood are foremost on her mind right now!)  At one point during our hike, my Mom asked me how many siblings I have and where I grew up in front of Janet . . but Janet didn't bat an eye.  She understood, and later told me in a text that she "could feel immediately what a wonderful person she (my mom) is . . . what a sweet lady.  I am in awe of how she zipped up and back down that mountain.  Thank you so much for sharing your day."  I thought that was very sweet of Janet! For the most part, I think my Mom knew who I was that day!  It was a fun and beautiful morning!

Yesterday my husband and I met my parents and sister at a restaurant about half way between our two houses. It's Father's Day today and so we wanted to take my Dad out for the occasion.  It was a good time!  I noticed my Mom stayed pretty quiet during our conversation, which isn't unusual lately.  I can't help but wonder how much she hears and understands about what we are talking about.  She doesn't participate much in the conversation, other than to ask what was said or who a certain person is.  At one point, I asked her if I could have a taste of her tasty looking shrimp and noodle dish. Of course she said YES and then kept insisting that I have more and more.  I think she ended up thinking her meal was both of ours and then kept saying that she thought she was eating too much of it.  That darn memory!  I couldn't convince her that it was HER meal!  I love that she still has such a kind and giving heart!

My older sister told me last night that although my Mom is still aware that she has Alzheimers, she's pretty sure that my Mom doesn't see the disease as a problem anymore.  It used to depress her and make her sad, as you can imagine it would, but I'm so grateful for the tender mercy she has received .... that she is unaware that her condition is worsening by the day!  At least I hope she is!

Happy Father's day to my awesome Dad who is being put through the ringer right now! I admire his patience and love in caring for my Mom! And to all the other great men in my life! 

 
Flashing back to 4.5 years ago . . . . 

January, 2010

Back in September at my Mom's Birthday lunch at Chuck-a-rama, I asked my Mom if she had seen one of her best, old high school friends that has recently gotten a divorce.  She said that her group of friends from school had invited this friend to a few places recently, but she just hadn't shown up to anything.  We concluded it was probably just too hard for her to be around these old friends of hers whose lives seem so perfect and good.  “Little does she know”, my Mom said, “that I’m slowly dying!”  I really don’t like it when she says stuff like that!  I don’t know how to respond. 

I’ve noticed lately that my Mom has been openly telling people that she has Alzheimer’s disease.  I think that’s a wise decision for her to do that, versus trying to hide it, and hoping that people don’t notice.  

I'm on the verge of having a conversation with my kids about my Mom's disease.  I've never had an open conversation with them about it.  I'm pretty sure that at least my older kids already know and suspect, and probably know much more than I even know, but I just feel that I need to talk to them about it and get it out in the open.  I'm a little afraid, though,  of not being able to control my emotions!

My Mom has been so good about sending Christmas and Valentine's cards each year lately.  Here is the most recent Christmas card we received from my Mom and Dad just last month (December, 2009), written by my Mom:

“Dear Matt, Mardi and Family,  
Just thought I’d send you one of my homemade Christmas cards.  (A copy of a stocking she painted)  We’re certainly in the Christmas spirit after hearing Mardi’s Christmas concert.  (I sing in a 100 person chorale and they came to hear one of my concerts!)  We cherish all of you and wish you the best Christmas as you think about others and forget yourselves!  You are good at that!  You are loved and cherished!   Love, Mom and Dad   

My Mom and my youngest in the fall of 2009

My Mom has been one of the best examples I know of serving and loving others, and forgetting herself and thinking of others!  I love that advice and I believe that’s one of the greatest keys to being happy in this life!  It’s so easy to get caught up in ourselves and feel bad for ourselves about what someone said or did . . but by serving others and getting out of ourselves, we find true happiness!  She has always had such great advice, even when the neurons in her brain are dying.  She still has that eternal perspective and hopefully can always remember that as she struggles through this trial!  I hope I can always remember too! 

I recently read the book "Still Alice" by Lisa Genova -- a great book about a woman named Alice that has Alzheimers.  I reviewed the book in my book club and cried all the way through my review, just because it hit way too close to home!  I really tried to keep my composure, but just couldn't! In the book, it talked about how Alice "liked being reminded of butterflies. She remembered being six or seven and crying over the fates of the butterflies in her yard after learning that they lived for only a few days. Her mother had comforted her and told her not to be sad for the butterflies, that just because their lives were short didn't mean they were tragic. Watching them flying in the warm sun among the daisies in their garden, her mother had said to her, see, they have a beautiful life. Alice liked remembering that.” 

I instantly loved this when I read it! My Mom, too, is like the butterfly, whose life might eventually be cut a little short . . . but a beautiful life it has been!  Her life has brought much happiness and joy into my life, and the lives of many people.  I've never told anyone before, but the butterfly is my new favorite little bug!  I can never look at a butterfly now without thinking of my Mom!  I wear a butterfly ring on my right, middle finger, and I don't believe I've ever told anyone the significance!  I think I'll keep it on for as long as I live, to remind me of my great Mom . . . and her beautiful life!   

It's such a small world we live in!

June 7, 2014

My Dad, along with Mafi - the loving and amazing hired help that comes into their house for a few hours each day - have been slowly cleaning out closets and drawers and cupboards at my parent's house.  I think my older sister is helping a little too, and I would imagine my Mom has been trying to help as well, but mostly I think she is just confused as to why my Dad is giving away and throwing out so much "stuff"!  After living in their house for about 38 years, I think they have accumulated A LOT!  Moving from room to room and closet to closet, my Dad is giving and throwing a ton away . . . and he says it feels so good!  I'm sure it does!  He proudly shows off his clean and organized book shelves and closets when I go over there.  He says it's really hard though to do when my Mom is around!  She just doesn't understand! Lately she has been upset because she thinks my Dad is giving away her "parent's things" and can not understand why my Dad would want to get rid of "their stuff".  Somehow she thinks a lot of this "stuff" is her parent's, although they have been gone now for 35 and 45 years!  I guess she even got so mad the other day that she left their house in a huff!  I never heard the details about where she went and how long she was gone, but I guess it turned out ok! 

Mom and Dad came to my youngest two's piano recital this past week!

A week or so ago I grabbed one of my Mom's journals to bring home and read.  I have been skimming through her journal from the years 1985 to 1993 -- from the time that I was 16 years old to the year that my first child Sarah was born when I was 25 years old.  It is so interesting to get a glimpse of inside my Mom's head from way back then . . when her mind was good.  She had such a good mind and good heart, and fortunately still has such a great heart!  It's amazing to read these journals from when she was just about my very age that I am right now.  I find that I can really relate to her life!   

I can't believe how much I really didn't know about her life!  Have I just forgotten a lot of things from all those years ago or did she just keep most of her busy, stressful life to herself?  She was involved in so much and led a fairly stressful life . . . at least during those 8 or 9 years, with a hubby (my Dad) who worked 13 hour days and was hardly home, and being the cook, cleaner, shuttle driver, clothes washer and best supporter and organizer for our family of 8!  And on top of that, she held many big church callings (Young Women's President at least 3 different times!), was room Mom on many occasions, prepared meals for neighbors and teachers at our schools, held open houses at their house for friends coming home from missions (where hundreds attended!), volunteered on many different committees, visited the sick and lonely, taught a nursing careers class, etc. The saddest part about all of that is that I really think she has very little recollection of any of that right now.  She has lived a long, good, service-filled life, and I think she would be surprised if I told her so.  "Oh really?" she would ask. "Well I'm so glad," she would then say.         

Here is one of her journal entries I read, from one month before I was engaged and four months before I was married:

October 9, 1990
"What is the meaning of this earth life?  Is it folding laundry, cleaning cupboards and shopping? Is it working for pay?  Is it serving without pay?  Is it devoting full time to being a mother? I know it is short . . . how to fill one's time?  I'm 47 - still healthy, still with 5 children left at home, a husband who works 13 hours a day, and is bishop at night and on weekends.  I have much responsibility and yet have some time to give.  This has been such a soul searching morning . . .  

I am looking for a job as a nurse, and even with a nursing shortage, there is a problem unless one wants to work full time or has lots of experience.  Little do they know, I'd be a great and dependable worker! :)  

Marilyn E. just called and asked if I would teach her mutual lesson for her on Sunday -- yes, I guess I will.  

I'm preparing lunch for the teachers at Clayton Jr. High for their Parent/Teacher Conferences this afternoon. 

We're trying to decide whether we'll take the family to Israel over Christmas.  It's very unsettled over there.  

Mike and I just got back from Callaway Gardens in Georgia where he attended an Echocardiography workshop.  It was so pleasant and relaxing.  While we were there we met a Jewish couple, Jane and Steve T. from Boston.  We played tennis, went to dinner twice, and spent some time talking religion.  Callaway Gardens was beautiful -- wooded forest with bicycle paths and man-made lakes.  Mike and I rode bikes around one of the lakes twice. We also played a lot of singles tennis and Mike was "red hot!"  One afternoon I took the car and rode over to La Grange, Georgia. We loved eating grits and potato pancakes." (end of journal entry)


I had one of those, "It's such a small world" experiences last night at a local restaurant, just a few miles from my house.  My family met my parents, my older sister Paige, and my sister Katie's family at Corner Bakery because my sister and her family of 7 just moved back from Hawaii after being away for 5 years, and so my Dad arranged to get us all together.  When done, we all walked out of the restaurant and most everybody left, but my parents ended up staying in the restaurant to talk to some old friends they had coincidentally run into.  My sister and I stood talking and waiting for them outside.  When I heard who their old friends were that they had been talking to, I figured out that it was my son-in-law's aunt's parents (are you confused? :)) that I had just heard about last week.  I had run into my son-in-law's aunt a week ago who told me that her Mom and my Mom were friends and had been in the same book club for years!  It's such a small world!  I had to meet them, and so I went back in to talk to them for a few minutes.  As we were saying goodbye, a cute gal came up to me and asked me if I was Merrilee Preece's daughter.  Long story short, this girl was one of my Mom's Nursing Careers students at East High School years and years ago, and we figured out that she now lives just a few blocks from me with her husband and 6 kids, in my same stake!  She went on to tell me how much she LOVED my Mom, and with tears in her eyes, told me how my Mom had really touched her life and influenced her for the good.  She had heard of my Mom's sickness and was so sad about it.  She had caught of glimpse of my Mom as she was leaving and wanted to talk to her, but didn't think she would remember her.  Of course it made me cry too! I knew my Mom had been a well liked teacher, but have not had the chance to actually hear it from her students.  My Mom loved them and they loved her!  This was pretty cool!  I'm so glad I got to meet those people last night and feel blessed to have been in the right place at the right time!  I love how small our world is . . . and what connections we can find if we just talk to someone long enough!  And, to prove the smallness of the world even more, this old student of my Mom's, Dianne . . her husband's Dad used to be my parent's stake president and are friends with them!  

Are you thoroughly confused now with all of my talk of "brother's wife's sister's mother-in-law's mom" talk?  :)  Probably so!  I'm sure it's hard to follow when you don't know who in the heck I'm talking about!      

Anyway . . . "It's a Small World After All!"  


Flashing back to 4.5 years ago . . . 

January 10, 2010

(Unfortunately I didn't write any journal entries during the year 2009 and so I spent January of 2010 catching up with all the little things that had happened and things that had been said from the previous year.  Here are a few of those happenings of 2009 . . . )

Quotes from Mom: 

"They're both soaps, aren't they? Why does it matter which one we use to wash our hands?" -- This is what my Mom said on December 13th, 2009, when she used dish washing soap instead of dial soap to wash her hands. I guess it's really not that big of a deal that she used dish washing soap, but she legitimately did not know the difference. 

"I may not have a brain, but my body is strong!" -- In a lighter, joking moment, my Mom said this as  she put both arms up and flexed her muscles!  We got a good little laugh. 


“They don’t ask me to do much in the ward anymore, but I can still help with things like cleaning the temple."  My Mom is fully aware that people are treating her differently and she's not getting any big callings.  So instead, she signs up for the many service project opportunities like cleaning the temple and other things. I wonder if she remembers to go to all of them!  Hopefully they call to remind her!

“My old tennis friends don’t ask me to play anymore.”  Fortunately there IS a group of ladies that do call her to play still and I’m so glad and grateful for that!  Thank you ladies!!  I don't think she would be happy without her game of tennis that she loves so much!  Although she can’t keep track of the score very well anymore, and she knows it, she can still hit a pretty good ball!

The heart never forgets!

June 1, 2014 

I came across this great video on Facebook the other day about a man with Alzheimer's that got lost . . . and watch what happened next . . . it's under 3 minutes long and is a tear jerker . . . at least for me!  http://sfglobe.com/?id=875&src=share_fb_new_875 . . . 

"Even though the mind doesn't remember, the heart does!"  The heart never forgets!!  "It's amazing what happens when LOVE becomes an instinct!" I have to admit that I shed a tear or two for how sweet that man is, and also how sweet the officer was to help him! 

Time seems to be flying by these days!  Can't believe it's the end of another school year already, and can't believe my first missionary has been out for almost a year now!  And it has already been almost two weeks since I have written a blog entry!  

My Mom and her only sis, Deanne at the cabin!
May, 2014

Last Monday, for Memorial Day, I had the chance to go up to my Mom's family cabin up and beyond Oakley, Utah.  It's beautiful up there at this time of year!  I drove up with my Mom, Dad and sister . . . it's a long story but the rest of my family was driving home from San Diego that day. Three of my Mom's siblings were up there with a small handful of their kids and grand kids too!  We had a good time!  It was like the olden days when we used to go up there on Memorial Day almost every year when I was young, and on the 4th of July too!  

After lunch, we all met up at the nearby reservoir and took a little walk, and a few even jumped into the freezing water!  I borrowed my aunt's bike and rode to and from the lake with my one of my uncles and a cousin, which was really fun, but I realized I'm not in as good of shape as I thought! :/

My Mom, in a social setting like that, would normally make her rounds to everyone there, asking them how they are and what they are doing in their lives.  She always had such a way of getting into other people, making good conversation and making people feel good about themselves!  This time she seemed a bit confused and unsure as to who all the people were.  I'm pretty sure she recognized her siblings, but her nieces and nephews and their kids, I'm not too sure!  She wandered around a bit, a little unsure as to what she was to be doing -- it seemed.  She even passed me in the kitchen a few times, seemingly not even knowing who I was.  And I noticed that people (including myself) were talking behind her back about her condition and she seemed totally unaware!  How sad she would be in her right mind to know that family was talking behind her back! Of course we talk in love, because we all love my Mom, but she would be sad nonetheless!
 

My Mom and 3 of her 4 siblings . . at the cabin! 
May, 2014

Just a few days ago I found myself driving down the street with tears falling off my face, mourning the fact that my great Mom, who I have known and loved for 45 years, is slipping away from me in this life time.  Like I've mentioned before, I have accepted the fact that this is the reality of my life and our family's life, and I am dealing with it as strongly and the best I know how . . . but every once in a while, I breakdown from the actual reality.  

My Dad says that my Mom seems to be getting a little worse each day.  Lately she has been taking photos off the walls at their house and taking clothes out of her closet and drawers and saying that she needs to take those things and go home!  What home is she talking about?  She is no longer remembering this home that she has spent the last 38 years in!  It's so mind boggling to me!  My Dad says, "It's not her fault . . . it's the disease's fault!"  He has grown incredibly patient through all of this! 

My parents have a big photo wall in the den in their house. It has approximately 20-30 different photos of various extended and immediate family members.  The other day my Mom asked my sister and I if we knew anybody on that wall.  We said, "Yes, we know everybody!"  She couldn't believe it and asked who all of them were!  She says she wants to replace the photos with different ones!? 

My Mom and sis taking a spin on the bikes at Smith and Morehouse Reservoir!
May, 2014

 My Mom keeps talking about the "school up on the hill".  Somehow she thinks there is a school up the hill from where they live, although up the hill is a mountain.  I'm trying to figure out what school she is thinking of?  She must be thinking of the two different high schools where she used to teach a nursing careers class . . that's the only schools I can think of . . . and she still talks of wanting to get another job there.  "I wonder if they'll hire me," she says. I try to convince her that she doesn't want to go back to work! 

I've recently found my Mom's most recent journal and have brought it home to read.  Inside the journal was also a pile of letters my Dad wrote to my Mom while he was on his mission to England.  It's so very interesting to read about the inner feelings of both of them!  I'll have to include a few excerpts from her journals soon.  I'm glad she was such a diligent journal writer! 


Flashing back to 4.5 years ago . . . 

January, 2010

(The following are isolated happenings that took place in the year 2009, but were written about in January, 2010.)  

Mike and Jennie (bro and sis-law) were in town from Boston for a little while . . . Jennie felt more comfortable if she drove my parent's car instead of my Mom, with her kids in the car.  I don't blame her.  My Mom said later, “Everybody already thinks I’ve lost it!”  

My Dad had a few incidences of doing some dumb things over a few week period and my Mom was so happy about it!  “I’m so glad it wasn’t me this time that did something stupid!  It’s usually me!”  My Dad got his car key stuck in his car, his Pilot, and he somehow lost his Ipod.  They were two major ordeals that really frustrated my Dad.  Fortunately for my Mom, she was comforted by the fact that temporarily she was in good company in being so forgetful, doing dumb things and misplacing things!   

One day while we were getting a pedicure, my Mom turned to me and said, “If I die soon, in my death bed, be sure and make sure that everyone can see my pretty toes!”  She keeps making remarks about “when she’s dying”, or “when I’m gone", or will you remember?”  I don’t like it!

My sis-in-law Jennie feels strongly that we need to get involved with an Alzheimer’s support group . . . she's probably very right, but for some reason I just can't do it right now!  I'm not in an emotionally stable enough position where I could go sit through those support meetings!  I'd probably bawl my eyes out and I'm afraid of that! Jennie ended up going to a meeting while she was in town (and my sister went too I think) and then told my Mom when they got back that they had gone.  A few days later my Mom broke down because she thought they had gone behind her back.

My Mom and her sis, Deanne in 2009

I called her one day to find out she had spent much of the morning in tears.  “I’ve just had a really dark morning. . . I have no memory! . . . I understand so perfectly what my Dad went through and why he took his life.”  I can usually hold it together while talking to her, but this time I could not.  How do you talk to someone that’s experiencing such a dark moment, and help them feel that life is worth living?  I told her I wanted to help her, but she said she has no idea what she’d have me do.  “I’m not afraid to die”, she said.  “I’d much rather have physical problems than to go through this . . . or maybe I wouldn’t.”  I need to start meeting her once a week and going to lunch and going on a little outing.  I think she really likes to be busy so that she doesn’t have to think of this disease and the future that lies ahead!