"Eating up every minute we have with them!"

April 28, 2014

Since my Dad now has this woman coming in to their house to help for a few hours each day, I'm no longer needed on Tuesdays.  I still want to try and have a weekly outing with my Mom though every week.  And I'd love it if my Dad wanted to come too, but I think a lot of times he's happy to just get a little break.  

Last Friday I arrived at my parent's house around lunch time to pick up my Mom to go on a little outing.  I didn't have a plan of what we were going to do, but it was a nice day and I thought we could go on a walk or go shopping or to lunch, or just whatever.  Right as I walked in the door and was greeted by both of them, I could tell my Mom had been crying.  Her eyes were red and it was just obvious.  I said, "Uh oh, what is going on? What's wrong?"  Apparently, a little earlier that day my Mom had walked the mile or so down the hill to the tennis center where my Mom has often played tennis.  I'm not exactly sure why she walked down there in her jeans and with her turtle neck on, but perhaps she was looking for her friends to play a little tennis.  The people there asked her if she was supposed to be there and if my Dad knew she was there.  I think that made her feel stupid.  Then they told her not to go anywhere and that they would find her a ride back home.  I'm pretty positive they were just trying to be helpful as they called my Dad to come get her, but my Mom felt dumb and  horrible!  "People think I don't have a brain!  People treat me like I am long gone!  If I walked myself down there, certainly I can get myself home!" I felt awful for her and feel so bad that she feels this way.  Quickly I changed the subject and fortunately we went on to have a very nice day together!  She brought up that experience a few times in the first hour, but then fortunately I think she forgot about it! 

On one of the walkway overpasses of I-215 in SLC!

We ended up going on a walk in a place that I have always wanted to walk and explore.  There's a walking/biking path that goes parallel and very near to one of our freeways here in Salt Lake City.  It's I-215 just off Foothill Boulevard and the pathway ends up going over the freeway a few times with these coolest walkways.  I have always wanted to walk there and see where the paths lead.  We had so much fun!  My Mom told me that she's never ever been on those paths before, but I would be surprised if she really hasn't.  They are great paths and are very close to my parent's house.  I'll bet she has been on them on one of her many bike rides out to my house years ago. It would be a great way to go. 

Anyway, as we walked along my Mom kept telling me how glad she is that I will be her walking and exploring buddy.  "There's not a lot of people that would want to do this with me!"  I feel the same about her.  I love that she likes to "walk over that next peak" and see what's on the other side.  We're a lot alike that way!  How many people would want to just take off and explore a new path, half the time not knowing where exactly it leads?  We both love it! 

These walks and hikes are getting a little harder though lately . . . my Mom often feels like we're going the wrong way, or we need to go a different way or that people at home are worried about her and she needs to call them. "There's a guy that's sort of babysitting," she said, "and I probably need to tell him where I am. . . or he'll be worried."  I guessed she was talking about my Dad?  Also, as I've mentioned before, her vision is not the best or she just sees things that are not there.  There was a place on this walk that goes down into a gully and there is a gigantic rock there with tons of grafitti on it.  You can see it from the freeway.  There are also many other rocks, not seen by the freeway, that have been painted on in bright colors and she kept thinking she was seeing people.  "There are a couple of people standing over there."  "Do you see those people up there?"  But we were down there all alone.    

For the most part I feel that my Mom usually is aware of who I am -- her daughter . . . but then just clearly out of the blue the other day she asked me where I grew up.  That happens every now and again.  When I told her I grew up by Hogle Zoo, she said, "Oh, then you lived really close to here too?"  And when we drove past my old piano teacher's house who lived very close to there, she said, "Oh, did you take from her too?"  It was my Mom who drove me there every week for years when I was little, but I didn't bother to remind her of that.

Cheerleading kicks on our walk, April 25, 2014 :)

Despite my Mom's forgetfulness and occasional confusion, we had a good old time!  One thing that is not gone, as mentioned before, is her sense of humor! We can definitely still laugh together and I love that!  It's a tender mercy in a mostly difficult situation.  At one point during our walk, she even broke out into a little dancing and some old-time cheerleading kicks!  So great to see these little glimpses of her real happy and energetic self! 

I'm so grateful for these times that we can have fun together, make memories and just enjoy each other's company.  My hope is that I am bringing some happiness into her life!  She deserves the best!


Flashing back to 5.5 years ago . . . 

November 30, 2008

    One week ago today I heard the bad news that my good friend’s Dad has just been diagnosed with ALS or Lou Gehrig’s Disease.  My friends are twins and the ironic thing is that just months ago, in the spring, I went up the canyon to Midway on a little girl’s get-away with the two of them, and my other friend Anne, and totally had a break down about my Mom.  They sat and listened so intently to me as I cried my eyes out about this slow process of losing my Mom.  They are now expecting to watch their Dad's physical body deteriorate over the next few months or years to the point that he won’t be able to talk or eat by himself.  I shed some tears for them knowing what they have probably been through this past week or two, and knowing how many tears they will probably shed before it’s all through.  I sent them the following email last Monday . . .

Dear Emily and Laura,

My Dad told me the news about your Dad last night.  I'm not sure where he heard it from.  My stomach dropped for you and I have not stopped thinking about you since then.  I'm so sorry!  How long have you known?  What do the doctors say?  I've heard that one can live for many good years after being diagnosed.  Are you feeling encouraged?  What are you feeling?  How is he feeling?  I don't believe there is anything harder in the world than having to watch our parent's health deteriorate!  I have dreaded this day for all of my life and it is tough!  You saw me break down at Zermatt over my Mom and her Alzheimer's.  Those breakdowns come about once a month, but for the most part I'm doing great.  I feel blessed that I have most likely a few more years to tell her how much I love her and to spend as much time with her as possible!  She wishes with all of her might that she had some physical ailment instead, like a melanoma, because she dreads having her mind go.  She says she would give anything to keep her mind in tact and to just have her physical body go instead!  She's totally aware of what's happening and is really sad and frustrated by it. 

I hope that you are both doing well and hanging in there.  I don't know exactly what to say at a time like this, but please know that my thoughts and prayers are with you and your whole family! 

Love you guys!!

Mardi


This is what I heard back from the two of them . . .

Oh Mardi,
It's just awful, isn't it? So much sadness. At best guess, he started 
having symptoms about a year ago but nothing significant until May. 
Even then, the doctors thought it might just be some bad arthritis in 
his neck. But this past week, the neurologist did some major testing 
and they are pretty sure that it's ALS.  So we have been doing a lot 
of crying (I'm sure you know all about that one!) and talking and 
worrying and planning and more crying.  The silver lining (it's very 
thin) is that at least we get some time with him and can take 
advantage of it. They are determined to live in the present and not 
look too far ahead, so we will eat up every minute we can with him and 
enjoy this time when he can still do things. And, for better or 
for worse, his mind does stay intact the entire time. He will just be 
trapped in a shell of a body and not be able to communicate or 
anything!  It's bad either way but I'm sure the worst thing for your 
mom is to have times when you know what is going on and not have any 
control over it. The whole thing is just horrible!

For us, one of the bad things (and for you also)  is just  not knowing 
how fast or slow it's going to go, you know what I mean?! The average 
time range for ALS (Lou Gehrig's)  is 3-5 years. We think he has a 
slow moving case and it should continue that way, but who knows? We're 
crying about everything he's going to have to go through and he's 
crying about causing us all so much heartache. So no one wins! 
Ugghhh!!!!

Emily said to me, right off the bat, that we should call you and 
let you know since you would understand the heartache. At least we can 
all go through this together. (Aren't we just a little too young 
still?!)
We love you too! Happy Thanksgiving!
Laura

And from Emily . . .
Well said Laura. That pretty much sums it up. Thanks, Mardi, for your email and for being such a good friend. You really do "get it". There are some positives to knowing someone is not well and having time to talk about things that really matter most and telling them how much you love them. But I think at this stage in the game, I'd rather deal with the shock and sadness of having them die suddenly rather than a drawn out sickness. It's just too sad for all of us...parent, spouse and children. It's like you're mourning for years before they're even gone. Anyway, it's going to be years of good times and sad times for you and us. I'm so sorry about your Mom. I have thought of you and your family so often. We need to have another "girl trip" and we can all cry together this time!

Lots of love
Emily

I then wrote them back . . .

Em and Laura,

You know I've thought A LOT about this and about whether or not I would rather have them die suddenly or to have it prolonged over years and years.  I've gone back and forth about it for the last few years . . . I've definitely had times when I felt like you, Emily, because we could cry and get the hardest part over in a few months if it was quick, but I think, at least for now,  I've come to appreciate this slow way better.  I think I might have regrets if they were to just die suddenly.  I've been able to have many heart to heart talks with my Mom in the last few years and I probably wouldn't have to that extent if it weren't for her condition.  I call her more and make sure I spend lots of time with her when we're together.  I just don't want any regrets!  You're right though, the crying and worry will be dragged out for years, but it does get a bit easier with a little time.  I think when I finally came to terms with the fact that my Mom most likely had Alzheimer's, I cried for days and days and didn't think my life could ever be the same, but fortunately the crying spells have gotten further and further apart.  Like I said, I have a breakdown about it about once a month.  It might be by myself and it might be to someone like with you guys at Zermatt. 

Do you know what has really helped me?  I am keeping a journal on my computer about my feelings and I'm writing down different memories of her as I go.  I write when I'm all alone and it has really helped me to get out my emotions.  Then my family and friends don't have to see me cry all the time!  Then when she's gone, I will have a collection of great memories of her when she was healthy!  She always says, "Please remember me when my mind was good!"  And I'm determined to do just that! 

Love you guys!  I sure feel for you!  In fact, my emotions have all come flowing back for you!  I think this is hopefully my cry for the month!  :)  I'm so sorry you have to go through this!  Just plan on a million tears before it's all done.  Remember, there can be positive that comes from all this.  I'm sure it's hard to find right now but you'll find it as time goes on.  Hang in there!  Have a great Thanksgiving!!!

Love ya,
Mardi

PS.  It's interesting that you mention "mourning for years before their gone".  I feel that I have gone through the grieving process over and over and over again!  But really, for some reason, just in the last year or so, I have had a peace about it all.  I just keep thinking about the fact that this isn't the real life.  This is just a speck of eternity and one day we'll be able to be with the ones we love, with healthy minds and bodies, forever!!  Wow, this is a little heavy, sorry!  Have a great day!!

Then, this is the last I heard from one of them just a few days ago . . .

No, that's not a little heavy! Those are just the same thoughts I've been having and reminding myself of...they help bring some perspective. It may be really sad now, but this is just a blink in the eternal time line. Thanks for your thoughts...they really help. Hope you have a wonderful Thanksgiving tomorrow. We'll keep in touch.

Love,
Emily

    I will have to be sure and keep in touch with them in the months and years to come!  This life is truly interesting!

    We ended up having one of the best Thanksgiving Days I have ever had this past Thursday!  Our original plan was to go to St. George for the whole weekend, but we decided not to when we thought that Paige (my sister) was going down instead.  She ended up not going, but we decided to stay home anyway.  We ended up going with my parents, Steve, Jenny and Ashley, and Paige on our traditional walk from my parent’s house to Temple Square, a six mile walk downtown.  With two cars planted downtown earlier that morning, we then drove to Chuck-arama and ate!  No preparation, no clean up, and great food!  It was great!  I know a lot of people think that is so untraditional to have a restaurant meal on Thanksgiving, but I think it was great!  We then went and watched a movie at Jenny’s parent’s new house in their new amazing theater room.  It was just an all around fun and relaxing day with my family and I loved every minute! 

    My Mom seems to be doing pretty good these days.  I didn’t even really notice that she repeated her questions so much in these last few weeks, but it’s more that she seems to get lost and confused when she’s trying to follow our conversations and knowing what we’re talking about. 

Memory:  One great memory I’ll always have of my Mom is that she has always been so diligent in sending us Valentine cards.  For as long as I can remember she has sent us all (including grandkids!) cards on Valentine’s Day telling us how much she loves and appreciates us.  I appreciate that!  She’s such a great Mom and Grandma!

Mom loves history . . . who knew?

April 23, 2014

Memory Book: A few years ago I asked my Mom if she remembered having a favorite nursery rhyme or bedtime story . . . and what kinds of books she liked to read most.  Here is her answer:

Mom: "I loved the story of 'Little Black Sambo' until he ran and ran and turned into syrup . . .  . (I'm not sure what that means exactly but some of you might!) . . my grandparents read us stories all the time, and my parents probably did too.  I remember liking 'The Ugly Duckling' and 'The 3 Bears'.  
When I got older, I loved all the Nancy Drew books. . . I now like the books that have come highly recommended by my friends."
'The Story Bible' is probably my favorite all time book because it's true and fascinating, it's meaningful to me, and it ties everything back to the Lord."  

My Mom has always been a reader for as long as I can remember.  She has been in a book club for many many years with some of her very closest friends, and I think she has read a lot of books.  Even up until just a little while ago, she would ask me if I had read any good books lately.  If so, she wanted to read it!  She listened to books, as well as read them.  Unfortunately now she is not able to read, and even if she could, I don't think she could track what she was reading, or remember it.  My Mom also has a hard time seeing.  She wears reading glasses to read and contacts to see far . . and I know there have been problems in the recent past with her losing her glasses or not having her contacts in.  I never know how well she can see when I'm with her.  For about the past year, when I have shown her photos of various people, she asks me who is in the photo?  Is it because she can't see or is she just forgetting who some of the people are??  I'm not sure.     

My funny face, parents and sister Paige in about 1972!

A few more questions I asked my Mom from the Memory Book:
Me:  "When you were in school, what did you do at recess?  What games did you play?"

Mom:  "I remember playing tag and on the monkey bars.  Sometimes we had a soccer ball and played with that.  One of my good friends was Elaine Rich . . . she was kind of a jock and so I became more of a jock.  We didn't play with a lot of dolls!  We played ball and we loved playing in the gully behind my house.  I also remember playing hopscotch, soccer, kick soccer and baseball." 

Me:  "What was your favorite subject in school?"

Mom:  "It always seemed to change, but I always liked history and PE!  I have always loved sports and liked history!"  

Me:  "How did you like school?"

Mom:  "I liked school but always seemed to struggle with math!  I needed a Mike P. (my Dad) to help me!  (My Dad has always been a wiz at math!) I had no one that could explain math to me until I met my friend Syd Smith  . . . and then SHE helped me a lot!"  

Me:  "Who were your favorite teachers?  And why were they special to you?"

Mom:  "I wasn't crazy about any of my teachers.  My PE teacher and my teacher over us cheerleaders was Ms. Warner.  I DID like her, but she never married and I always felt sorry for her! . . . My a'cappella teacher was Ms. Bowman and I didn't like her!  My senior year, it seemed like everyone got into the a'cappella singing group, but me! I remember my friend Bonnie didn't get in either, but she complained and got in.  Maybe I should have complained too. :)  It was pretty traumatic for me at that time!"  

Hiking Mt. Timpanogas in October, 2008 . . . and we are singing!

It's amazing how an experience like not getting into a singing group can stay with you for so many years!  Sadly, I think that experience made a difference in her confidence to sing.  She often sang in the ward choir and I learned to sing Alto by sitting next to her in church.  I always thought she had a great voice!  I also remember her singing around the house and it is common, even now, to find a group of us singing around the piano on a Sunday night!  I guess you could say my family likes to sing!  Like I've mentioned before, my Mom and I decided a long time ago that we are going to dance and sing in heaven together!  Can't wait for that! :) 


Flashing back to 5.5 years ago . . . 

October 5, 2008

"This is the Place" Park in October, 2008 with Carter, Matt and Jake!

My brother Mike and his wife and kids are in town for a few weeks from Boston and it’s been fun to spend some time with them.  We all went and hiked up to Timpanogas Cave the other day and we also went to the “This is the Place” Heritage Park. 

I had a great time walking along the trail with my Mom and talking to her.  That is the best kind of setting to be in with my Mom because it is stress free and her mind seems the most clear.   

Mike’s son Carter just had his 4th birthday on the 3rd and they had a pirate party at my parent’s house that day.  I am noticing more and more that my Mom does not do things with as much precision as she used to.  For example, she had wrapped some books for Carter and had tied the ribbon on the bottom of the present instead of the top.  I’m probably the only one that even noticed that day because of course a 4-year old wouldn’t notice or care.  Also, I went through a photo album that my Mom had just filled up with photos.  The photos were out of order and stuffed in there sloppily and overlapping.  I believe I have a speck of perfectionism in me and like things to be just so, and she has never really been like that, but these photos were stuffed in there two and three and four deep and that is not like her.   

Mount Timpanogas with Britt in October, 2008

It’s General Conference today and my Dad has invited us all up to their house to watch the afternoon session.  My Mom is not too happy about it because she says that she does not get to watch conference when there are so many kids running around.  I don’t blame her.  It’s true!  It’s very hard to watch when there is so much confusion and so many kids.  Poor Mom!  I know she feels like she has no say in anything!  I will make sure she goes into her room and is undisturbed!  Interestingly, I think my Mom has always felt this way about having us over for conference, but has never dared say anything about it.  Lately it has been more common to hear her complain about a certain something or someone.  I think it might be part of the disease.  I have never known her to be someone to gossip about someone or to be a complainer. 

Small turns for the worse

April 21, 2014
 

My hub and I in St. George, Utah . . April 19, 2014

Yesterday was Easter.  My family just returned last night from our spring break trip to Southern Utah.  On our way home I watched a video that has been circulating around Facebook for the past week or so entitled "Because of Him".  I've been curious about it all week, but finally got around to watching it. I love the message of it and couldn't help but think of my Mom and Dad as I watched it. 

http://www.youtube.com/watch?v=HE9t5UeYaNE

". . A single act that changed history . . he was a carpenter, a teacher, an outcast, a leader, yet he did what none had ever done . . he rose from the dead . . he lives, and because he lives, you and she and he and they and we will all live again . . BECAUSE OF HIM, death has no sting, the grave no victory . . We can start again and again and again . . BECAUSE OF HIM, guilt becomes peace, regret becomes relief, despair becomes hope . . BECAUSE OF HIM, we have second chances, clean slates, new beginnings . . There is no such thing as the end . . BECAUSE OF HIM!

The part that stuck out to me the very most was "DEATH HAS NO STING" and of course it made me cry thinking of my Dad and dealing with my Mom on a daily basis, and knowing what the final outcome will be with this disease.  I've mentioned this before but I know this is probably not the life at all that my Dad imagined for himself and my Mom at this stage in their lives . . and I'm sure it's not the life my Mom imagined either!  If we can only remember the messages of this video always in our lives! "Death has no sting!"  "Despair becomes hope!"  "There is no such thing as the end!"  And all "BECAUSE OF HIM!" How grateful I am for this knowledge, to know that we will live again and that my Mom will get her good old mind back one day!  For how else could we make it through all this crud in this life?  

Last year, 2013 on a walk to the park by their house!

I just talked to my Dad on the phone a little earlier today.  He says my Mom seems to take a little turn for the worse on a daily basis now.  I guess yesterday she kept talking about how she needs to go home as she was searching for her suitcase and wanting to pack to "go home."  What is this home she is talking about?  I know she is confused and this is just part of this crazy disease, but I want to think she is wanting to go home to be with her parents and loved ones that have passed on before. She has told me before how excited she is to see them again!  What a reunion that will be!  I sit and cry just thinking of it!  I pray daily that this part of the disease will not drag on for too long . . . just long enough that we can enjoy our time with her, but not long enough for her dignity to be lost!  

My Dad's found hired help is just starting today.  They are just going to come for a few hours each day for a while until they are needed for longer periods of time.  My Dad said that he's still a little nervous about how my Mom will react to them, but is hoping for the best. The only interaction my Mom had with the one gal today (that I know of) was when my Dad was driving my Mom to play tennis.  He said they were introduced to each other then, but he doesn't know how she really felt.  He hadn't talked to her yet.  Knowing my Mom, she was on her best behavior and was friendly, but I wonder how she really felt?  I guess we'll soon find out! 



Flashing back to 5.5 years ago . . . "small turns for the worse" even back then!

September 29, 2008

    I’m afraid my Mom is taking a small turn for the worse!  We had dinner at my parent’s house last night and I don’t think I’ve seen her quite this bad.  She seemed extra quiet and couldn’t seem to track what we were talking about.  She kept asking questions and seemed confused.  I think it becomes worse for her when there’s a lot of confusion around.  My brother and sister-in-law are in town from Boston for two weeks and staying with my parents.  They have an almost 4 year old boy and two 17 month old identical twin girls.  Combine that with my six kids and my other brother’s little three year old girl, and things can get a little loud and crazy!
    My Mom and I were left alone in the kitchen last night and she opened up to me about her church calling.  I’m so glad that she will open up to me about her deep feelings!  I guess the Primary President came up to her at church yesterday and asked her if she would like to be released from her calling as a primary teacher.  She said “yes”, but has really mixed feelings about it.  I think it will bring her great relief to not have to worry about preparing a lesson every other week and having to deal with kids who sometimes are hard for her to deal with.  I think she’s enjoyed it for the most part, but it will be good for her to be able to go back to Sunday school and Relief Society.  I hope they find a calling for her that will not overwhelm her and will make her feel important and needed!  

Summer of 2010 with my Mom and sis-in-law Jenny

!

     Interestingly, my Mom has the belief that most people do not know that she is having trouble with her memory.  It upsets her to think that the Bishop and other people know that she struggles with her memory, or that people will find out.  She does not want to be treated differently!  Of course the Bishop and most people know and have probably known for years, but I’m glad that my Mom thinks otherwise.  

    I’m afraid that my Mom’s driving days might be coming to an end fairly soon.  My older sister went somewhere with her the other day and says that she doesn’t feel she should drive much longer.  That’s a hard one!  I went driving with her on her birthday a few weeks ago and I thought she did just fine, but what do you do?  If she causes a horrible accident by entering the freeway going the wrong direction or something like that, we would all feel terrible!  Yet how do we take her license away?  How do we tell her she can’t drive anymore, and take away that freedom?  She did lose her car in a parking lot a few weeks ago and my bro Steve had to drive down there to help her, and maybe it’s things like that that we should help her avoid.  I hope she comes up with the idea herself of not wanting to drive anymore, but that might not happen!  But how hard will that be too for my Dad to have to drive her to all of her activities?  He'll feel like a chauffeur!  I guess I’ll just let my Dad make those kinds of decisions!   

    I’m going out today to get my Mom a new calendar.  She has a calendar with little 1 inch by 1 inch squares that she tries to write her whole day schedule in, and no wonder she gets confused and can’t figure out where she’s supposed to be . . . and when!  I think a good calendar would help her feel more organized! 

Always so full of life!

April 15, 2014

Happy Tax Day!  My family is on a spring break trip in Southern Utah for the week.  I called my parents before we left . . to find them in their car on their way home from going out to dinner.  They had me on speaker phone.  I love how my Mom's social skills are still pretty great.  In the background, I could hear her saying, "What's new with you guys?"  "Be sure and drive careful," "What have you guys been up to?"  I didn't have a chance to really talk to her since there were others in the car and we were on speaker phone, but I love that she's still as thoughtful as ever!  

I just talked to my parents again on the phone this morning.  Unfortunately I am not going to be around to help my Dad out with my Mom today while he goes to his usual Tuesday meeting downtown!  He doesn't know what he'll do with my Mom, but my guess is she'll end up staying home alone . . and that makes me a little uncomfortable.  I joked with my Dad that he could fly her down here for the day?! :) haha  Wish it was that easy! 

My Mom was very happy on the phone and wondered what we are up to.  She said she wished she was down here with us vacationing, and then in reference to my Dad in the same room as her, she said "this guy is being very nice to me!"  I'm wondering who she thinks my Dad is??  

2009 in my backyard!

My Mom has always been so full of life . . and active and energetic . . and I never want to forget that!  Years ago I remember her doing hand stands and even headstands.  I remember being so amazed at how long she could hold her hand stands and would try and try to be as good as her!  She was a cheerleader in high school and college and so I guess she got a lot of practice!  Quite recently, in the last 5 years or so, I have seen her doing cartwheels and jumping on a trampoline.  Keep in mind that she is around 65 years old in this photo! 

When she was younger, like in her 30's and 40's, she tap danced with a group of ladies and started up the game of tennis.  I don't think she took up tennis until she was about 35 but then she progressed very quickly.  Her and her tennis team were very good and even played in National Championship tournaments! 

Through even the last 10 years she has continued to play tennis, hike, bike, walk, dance and sing! :)  We decided long ago that we are going to sing and dance in heaven together!  Can't wait! :)  I hope there's hiking too!


Flashing back to 5.5 years ago . . .

September, 2008

My Mom is a primary teacher, which I believe might be the first time she has taught primary in all her years.  She's always worked with the youth (Young Women's) and with the women in Relief Society.  I think she quite likes it in primary (with the 11 year old girls), but I also think it's a bit of a challenge for her right now. She has told me that "teaching primary is just so hard with all the distractions . . . but I don’t want to ask to be released.  I don’t want to be treated different."  She's afraid to ask to be released, or to be released without asking, because then what?  What calling will she get next? 

Right before leaving on their mission in 2000 . . with my 3 oldest!

My Mom had an incident a little while ago where she went shopping at a strip mall.  When she went to leave and find her car, she could not remember where she parked!  She walked all around and never could find it, and ended up having to call my brother Steve who went and rescued her.  I feel so bad for her!  How frustrating would that be to not be able to find your car after shopping?  I think we've all lost our car briefly at some time or another, but to not find it for a long period of time? 

I'm so thankful for all of my Mom's friends who have stuck by her.  A few that come to mind are Faye, Margaret P., Suzanne L. . . . who all continue to call her to do things . . to go hiking and biking and other things!  I've got to remember to be a good friend like this to my friends . . . even if something happens to them that makes them not so fun to hang out with anymore. 

"I have had a great life!"

April 9, 2014

My Dad had his usual Tuesday correlation meeting in downtown Salt Lake yesterday afternoon.  Tuesdays are my usual day lately to go hang out with my Mom while he's in those meetings! Yesterday I met my parents downtown and decided to just stick around down there with my Mom, instead of going somewhere else with her. Downtown Salt Lake is a fun place to hang out, especially on a beautiful day like yesterday! There are numerous shops and places to eat, and just pretty scenery to see!  I need to go down there more often . . . very therapeutic!

I found a few coincidences from yesterday . . . first, my 17 year old son was asked to fill in playing the piano at a restaurant located on the roof of a building right next door to where my Dad's meetings are . . at the very same time of his meeting.  They both had to be there at the same time and so it worked out so well to drive down there with him, and then go spend time with my Mom!  And the other coincidence . . . while my Mom and I were just walking around this outdoor shopping center, we ran into some old friends of my parents, the Wheelwrights, who are living in Hawaii right now, but are here visiting for conference.  

Running into the Wheelwrights in downtown Salt Lake, April 2014

The Wheelwrights were mission president in the London Central Mission at the very same time that my parents were mission president of the London South mission, (2000-2003) and that's how they met and became fast friends.  The Wheelwrights are now next door neighbors to my sister and her family in Hawaii where they are president of BYU Hawaii.  They just happened to notice us as we were walking past the restaurant they were eating in yesterday afternoon.  I'm not sure my Mom remembered who they were, but if she didn't, she really fakes it well.  Her social grace is not gone and she's still as friendly as ever.

Throughout the day I found it interesting that my Mom kept bringing up her parents and grandparents and how she would love all of our family to get to know them.  She asked me a few times if I was the one that hiked up "that mountain", Ensign Peak, with her recently.  "Yes, that was me.  We had a good time, didn't we?" I said. 
"I really want our whole family to hike up there and hear the stories of my parents and grandparents . . . that was my stomping ground . . that's where I spent a lot of time when I was little." 

Temple Square, April 2014

While eating in the food court at this City Creek outdoor mall, my Mom and I had a good little chat.  Although she didn't remember seeing the Wheelwrights 30 minutes earlier, her mind seemed fairly clear.  A few minutes into our lunch, she said, "This life is really interesting, isn't it?" 

Me:  "Yes, it really is!  You just never know what is going to happen in life, do you?"  We then went on to talk about these two men (young Dads) that were just recently hit and killed while riding their bikes to work and how sad and unpredictable life can be.  I asked her, "Up in heaven, before we came to earth, do you think we got to choose our trials?  Do you think you agreed to having Alzheimer's disease?  Do you think you might have said, 'YES, I will volunteer to have that horrible disease!  In exchange for my great life, I will suffer Alzheimer's at the end of my life!'  
Or is life more random than that?  Do things happen more by chance?"  I'm not sure what I believe concerning this!  Are coincidences just coincidences or do things happen for a reason?  

View from Dad's cousins condo, April 2014

Mom:  "I think it's just random . . .You know, Alzheimers hasn't been all that bad for me.  I've been able to do what I want to do and go where I want to go."  This is so true.  For over 10 years with this disease, she has been able to ride her bike and take some beautiful hikes and travel with her friends and my Dad.  Interestingly, her feelings used to be so different!  She has told me numerous times how she would much prefer having any physical ailment over losing her mind.  I'm so glad she has forgotten about this! 


My Mom went on to say, "I have had a really good life.  I've been blessed to have good parents and good friends and a great family!"  

I'm so happy she feels this way! 



Flashing back to 5.5 years ago . . .

September 18, 2008

    I am on a little 3-day getaway with my hubby and some friends in St. George, Utah.  My parents own a condo there and we go down there as often as time will allow. (3 or 4 times a year)  I haven’t been sleeping great lately.  I’m often up and awake very early in the morning.  Since I'm up early before everyone else, I thought I’d take this time to write down the thoughts that have been on my mind!

    My Mom met me at a tennis clothes store a little over a week ago to help me pick out some tennis clothes since I've decided to take up tennis again after many years.  My youngest child, Josh is now 3 years old and just started preschool a few weeks ago, so I’m enjoying some "childless" time a few days a week.  Don't get me wrong . . I love my kids more than anything, but you know what I mean!  We all enjoy our breaks!  I thought this would be the perfect time to take up tennis again after 15 years of not playing much . . . through 6 pregnancies, nursing 6 babies, etc.  I never thought I’d reach this stage of life! Yahoo! 

    My Mom knows the owner of this tennis store because her and my Dad have shopped there for years.  My parents have been big into tennis for almost 30 years now and I think have shopped there all along!  Josh and Spence, my two youngest kids, were with me when I met my Mom, and then we all then went out to lunch at Café Rio after.  As we pulled into the parking lot, we were very pleasantly surprised to find my youngest brother, Steve, and his wife Jenny, and their little Ashley coming out of the restaurant.  They had met there in the middle of Steve’s work day for Jenny’s birthday.  Of all restaurants in the whole Salt Lake Valley, I couldn’t believe what a coincidence that was to see them!  

    Anyway, my Mom and I had a very open and nice and difficult conversation during lunch.  She confided in me about how hard it is to not be able to remember things.  She said that she would rather be enduring ANYTHING else right now, namely any physical ailment (cancer, etc.) than to be losing her mind - as she says she is.  Like I’ve mentioned before, that has been one of her very worst fears in her life - losing her mind!  She doesn’t understand, of all her four other siblings, why her?  It's a good question, but I believe it's just how life goes!   

    By the way, I was proud of myself for staying strong during our chat.  I was able to hold myself together during most of our conversation, until the last few minutes.  I broke down and tried to express to her how sad I am that SHE is so sad.  I didn't tell her this part, but I'm also obviously sad because I know that my Mom, who I love so dearly, is slowly dying and will not always be with me here on this earth, to call her anytime I want and so she can watch my children grow up.  

Out to lunch with extended family in about 2010

    My Mom’s perspective is amazingly clear.  She clearly knows what is happening to her.  I even brought up the word ‘Alzheimer’s’ for the very first time with her.  I asked her if she thought she might have Alzheimer’s, and she said “Oh yes!”  There is no question in her mind. 

    “I’m not afraid to die”, she said, “I’m just afraid of how I’m going to get there!”  The last thing she wants to do is be a burden to anyone or to have someone else have to wipe her bottom, she has told me many times.  “I wish I could just die of some other cause . . . soon. . . I wish I could just die before it all gets worse . . . Now I completely understand why my Dad took his own life.”  I’m not exactly sure what brain disease my Grandpa had (I believe Picks disease), but I guess he went through similar forgetfulness before he turned on his car in an enclosed garage and took his own life.  He just couldn’t take it anymore!  My Mom keeps mentioning that her forgetfulness reminds her a lot of her Dad.  I assured my Mom, through my own tears that I would make sure she is taken care of with all of her dignity intact.  

It surprised me that my Mom even mentioned the fact that she never wants to be placed into one of those homes . . assisted living homes where she could possibly be abused by one of the employees there.  How sad that she's even thought of that and has that fear!  I will do everything in my power to not allow that and I’m sure the rest of my family will do the same!  I would take her into my own home before I would allow her to go into a home.  

    That day at lunch my Mom clearly made it known that she understands the big picture of all of this.  Although she’s unsure as to why she has this particular trial, she knows that this earth life is just a short little part of eternity.  “We have the gospel and we have our family”, she said.  Together we decided that we need to take it a day at a time, appreciate the good, and help each other make it through.  

    A few other things my Mom said that day at lunch that I don’t want to forget . . . She expressed how much she misses her parents and looks forward to seeing them all again!  Her Dad, my Grandpa, died about 40 years ago, before I was even born, and my Grandma died when I was 10.  I’m now 39.  That was a long time ago!  My Mom has also mentioned a couple of different times lately that she hopes we will all remember her when her mind was good.  Of course we will!  I am going to make sure of it!!

    It made me sad that my Mom apologized for putting all of us through this.  “The last thing you want to do is have to babysit your Mother!” she said.  That’s true, I don’t want to do that, but I'll certainly do it for her!  I’d do anything for her!

My youngest bro Steve and Mom in St. George, summer 2010

    My Mom’s birthday was on the 10th of this month.  She turned 65 years young!  My Dad went on one of their medical trips, alone without her, right over her birthday and so he had arranged to have a dozen red roses delivered to her that day.  Way to go Dad!  I think that meant a lot to her!  I took her to get a pedicure and a manicure that day, and to get a slushee from Sonic.  She deserves to be pampered like that and she loved it!  She went right home after she got home and wrote me a thank you note and mailed it.  It read: 

“Mardi,   
What a wonderful daughter I have been blessed with. with (crossed out)  I have had such an enjoyable birthday thanks to you!  I was pampered and spoiled as I received my manicure.  I also had a chance to visit with you in a quiet setting. 
I’m still enjoying my slush as I write this card.  You are truly a special child of God, and a great blessing to me.                                               
This day will be a wonderful memory for me.
                        Much love,
                            Mom
It will be a great memory for me too!  It made my cry and I’m going to keep it forever!  

    Although I think this whole process of watching my Mom slowly lose her life over a period of many years, is the hardest thing I will ever do, I am grateful for the many cherished memories I will have of her.  I am grateful for the lessons I have learned from her and the time I have to spend with her.  I do and will have many opportunities to spend time with her and to tell her that I love her.  I would not like it if one of my loved ones died suddenly without a chance to show and tell them how much I love them!  My Mom is the best!

They are more aware than we might think!

April 8, 2014

My Mom said they had a good time in Colorado with my brother and his family last week.  When I saw her on Sunday, her finger and toe nails were all painted and pretty, and when I asked her about it she told me that "someone just pulled me aside and wanted to do my nails the other day."  I'm pretty sure it was my sis-in-law Jennie that painted them. :)

My Mom appears thinner to me lately.  She's always been thin and in great shape, but I wonder if she's losing weight?  I know she went through a time that she craved her sweets and would occasionally forget she had already eaten a dessert, and would have another, and probably gained a few extra pounds.  Maybe she's now forgetting to eat sometimes . . . I don't know! 

We had a fun family gathering on Conference Sunday with my sister and her husband who are moving back to Utah after living in Hawaii for the last 5 years with their 5 girls. My Mom was in her usual mode of being in the kitchen most of the time, cleaning up and doing dishes.  For the most part, she still takes part in our conversations at the dinner table, although much of the time she doesn't hear us right and often asks us to repeat back what we just said.  Is that part of the disease or is she just a little hard of hearing?  I'm not sure, but maybe it's a little of both!  I think a little hearing loss may run in her family.  I love the fact that my Mom still has her sense of humor, and even when she might not get a joke (as I don't either sometimes :)), or understand exactly what people are talking about, she is really good at faking it.  My Mom still has her usual social grace and that is a great thing! 

Me, two of my sisters, and MY MOM . . . April 6, 2014

Memory Book:  A few years ago, over a period of about a year, I asked my Mom a series of questions from a "Memory Book" and recorded her answers in a book. Here is one of the questions I asked:
"If you could change something about yourself, what would it be?" 
At first my Mom quickly said, "I don't think I'd change anything."  But then after thinking about it for a few minutes, she added: "I've always been a little jealous of people that are confident to speak out.  I haven't been as "glib" and well spoken as I would like to be. . ."

"I was a school teacher . . a good teacher . . I think the kids liked me and I had a good time teaching and was always comfortable there . . so it was mostly with my peers in social situations where I wish I was a little quicker on my feet!" . . .

My Mom and her sis, Deanne in the early 50's . . in the gully behind their house!

"I was pretty confident growing up.  My big sister Deanne was popular and paved the way for me.  I had a lot of friends and always felt that I was in the "in" crowd . . . until now!  People now think I'm weird.  I don't drive and need rides everywhere I go.  I feel more in the "out" crowd now.  This is the hardest time right now because I feel so darn lonely!'

"Hot Mama" sisters at the commissary in the 80's?

That just makes me sad!  People just don't realize how very aware some of these people are who have Alzheimer's!  From the initial diagnosis of Alzheimer's, I think many just assume that one's insight is completely lost . . which is definitely not the case!  I think a tender mercy is when one finally loses their insight and doesn't realize that something is wrong.  I believe we might be getting closer to that point! 




 Flashing back to 5.5 years ago . . .

August 7, 2008
    One of my Mom and Dad’s really good friends just recently found out she has colon cancer and just went through surgery to remove it!  What an interesting part of life it is to grow old and to watch your own body and your friend’s body’s fall apart.  Amongst my parents and their friends, there has been cancer scares, strokes, Parkinson’s disease, etc.  These are the people that my parents have known and loved and traveled with for years!  I’m not looking forward to that day when myself and my own friends start to fall apart!  Actually, I’m only 39 and I already feel my body getting older and somewhat falling apart! :/   

    I know I've said this many times, but I can't get over what an interesting disease Alzheimer’s is!  It is fascinating!  I’ve also mentioned before that I am so grateful that my Mom, for the most part, is just her normal, great self.  Talking to her lately, I honestly hardly know that anything is wrong.  She is still just as loving and caring and fun . . . and sometimes I find myself wondering if this is all just a huge mistake, and perhaps she really doesn’t have anything wrong with her at all.  She seems so 'with it' and good.  It’s just that darn short term memory that we’re all noticing, and thank goodness, she is not aware that she asks the same questions repeatedly!  She is definitely aware that she can’t remember like she used to and that frustrates her, but I’m grateful for the fact that she believes all is well with everything else!  I talked to her on the phone a few days ago and we were talking about her friend that had a few complications with her colon cancer surgery and she said something to the effect of, “I would much rather have to deal with something like that than lose my mind . . . your Dad would probably say that I am losing my mind!  I sure hope not!”  I assured her that she sure seems normal to me . . . and she was glad!

Tennis in St. George, 2011

     Well, my Mom continues to go on many bike rides up Emigration Canyon and all over the place.  Her bike is her best friend right now and I’m grateful for her physical health and for her ability to do that, as long as she never gets lost!  She loves it!!  That is her therapy.  

     She expressed to me yesterday on the phone that she’s very frustrated with the game of tennis right now because she can’t ever keep track of the score and she feels bad that she always has to ask her friends what the score is.  “No wonder they don’t ask me to play very often anymore!”  That makes me sad!  I think her tennis days might slowly be coming to an end.  She also says her eyesight and hearing aren’t what they used to be!  I will continue to pray that my Mom can do what she loves for as long as possible!  

    I feel bad that many people are talking behind her back about her having Alzheimer’s disease and she has absolutely no idea.  She would be mortified in her totally right mind to find out people are talking about her!  I know when I meet her back in heaven one day, she’s going to be mad at me for keeping it all quiet and pretending it wasn’t happening.  I think she’ll understand though that we’re just protecting her and her feelings because we love her so much!  She’ll forgive me!  I really believe she will!  

    When my Mom tells me the same thing over again, I’ve been wondering if it’s best to say, “Oh yea, you mentioned that earlier”, or just to pretend it’s the first time she’s telling me.  For example, the other day she called me to tell me there’s a great sale at a clothing store called Chicos and that she had already bought some great items!  (The clothes are 50% off the already sale prices.)  She then called the next day to tell me the exact same thing and we had the exact same conversation.  In that case and in moments like that, I decided it’s best just to go on as if it was the first time hearing it!  Why make her feel stupid? 

    I am grateful that my parents continue to travel with their friends quite a bit.  I’m happy that they’re keeping busy and having some great times!  This next month they will be going on a bike trip with their dinner group friends and then up to Seattle to spend some time with my Dad’s cousins.  I hope both their health allows them to do it for many more years! 

    It’s becoming more and more common that my Mom will set out in her car to find a certain location and she will not be able to find it.  She has never had trouble finding addresses until now!  A few months ago one of her best friends, Anne S., invited her to a big fundraising luncheon that she had planned.  It was in downtown Salt Lake and after an hour or so of looking, my Mom gave up.  The problem is, she does have a cell phone, but often forgets it or doesn’t remember people’s numbers.  Anyway, that really frustrated her.  She had a similar experience a few weeks ago where she set out in Utah County somewhere to find a baby shower for one of my parent’s missionaries.  A few hours late, she finally arrived.  I told her when things like that happen, she needs to call me and I can help her.  She was literally around the mountain from me and I could have gotten to her in 10 or 15 minutes.  I would have gladly helped her but I’m not sure she had her phone with her that day anyway!  

    Again, I am grateful for you, my computer friend that will let me "cry on your shoulder".  It really helps to get these feelings out!  Thanks! :)

The future scares me!

April 5, 2014

Mom and Jennie in Colorado!

My parents are on their way home from Colorado as I type.  I talked to my sis-in-law who they were staying with and she said "overall, we had a wonderful time!"  It is very much like Jennie to be so positive!  Knowing her and my brother, they made some great memories with my parents.  She mentioned that they did pedicures during General Conference and Jennie went on a bike ride with my Mom, and my Dad got some good quality time with my brother too!  The reality is, they don't think my Mom really knew or understood exactly who they were.  She kept talking about how she was wanting to just ride her bike home to see her family, and she was worried about her family back home and how they were probably worried about her.  I think they ended up calling my older sister Paige a few times so that my Mom could "check up on things at home."  She was sure that family at home was missing her!  Yes, or course we miss her, but SHE WAS WITH FAMILY and didn't even know it! 

 We are going over to my parent's house tomorrow for brunch (between conference sessions) and it will be interesting to see what she says about their trip! 

 

Pedicures in Colorado with one of the twins!

I talked with Jennie today about possibly planning a big family trip with all my siblings this summer in Jackson Hole.  It's hard to plan something like that when we have simply no idea what condition my Mom will be in in 3 months!? What do you do?  I have no idea!  

The future . . what's to come with this disease . . scares me!




Flashing back to 6 years ago . . . 
 


June 18, 2008

  
     This morning I read an obituary that hit me pretty hard.  “Diane England, 63, died peacefully Sunday, June 15, 2008 at home due to complications of Alzheimer’s disease.  She was surrounded by her family who loved her dearly. . .”  I cried as I read the whole obituary, thinking of the family and what they have gone through in the last few years.  And she was so very young!!  My Mom is 64 right now and I think it’s just way too young to be going through this!   

My daughter, sister, and Mom, April 2013

   Things continue to be going pretty well with Mom.  There are still occasional days that I think, “Oh no, could she be taking a small turn for the worse?” because she has her days that she’ll tell me the same thing over and over again.  Like a few weeks ago, they returned home from one of their medical trips and we were having dinner at their house.  She repeated over and over again how they hadn’t eaten for 24 hours and how hungry she was.  Other days like last Sunday (Father’s Day), they had just returned home from Africa earlier in the day, and she seemed really good and with it!  I’m so grateful for days like that.  The only thing I noticed that day was that she asked me about three times if I wanted a bowl of ice cream within just a few minutes, and I told her “no thanks” every time.  That short term memory is just where she struggles the most, but she was able to talk details about her trip and about things from her past.

    Something I’ve noticed quite gradually with my Mom is how she’s not as neatly dressed as she always has been.  She has always been such a nice and classy dresser and I always used to enjoy the fact that we are and were the same size and have always been able to share clothes.  Also, her hair and make-up aren’t done with the same effort as from years before.  She continues to get her hair done on a regular basis, which is helpful, and right now her hair is cut pretty short, which is probably for the best since it doesn’t require much effort to do it.  She still looks good, but I wonder at what point we need to step in and help her?? 

    An interesting thought . . . my children have never asked about my Mom’s memory loss or if anything is wrong.  I think it might be for the best for them not to know for as long as possible.  Why worry them?  What would that help?  My older kids might be aware of it, but they might not too.  Maybe they’ve heard me talk about it on the phone and they just don’t want to face the facts by talking about it.  I was fully aware of my Grandma’s memory loss for years, and so were most people, but we just didn’t talk about it much.  In fact, I didn’t realize until after her death that it was probably Alzheimer’s disease that she ultimately died from.  (Some have since said it was just dementia, so I'm really not sure at this point.)  I just knew that she had memory loss that got worse and worse through the years. 

    One of the things I worry about most about with all of this is my Mom being left out amongst her friends.  She’s been super sensitive about this lately and has felt a little left out.  She’s always been so social and has always had a lot of good friends.  She told me about an incident a few months ago where she was at a book group or something with a group of her lady friends, and two of her very best friends left early together, without saying anything, to go somewhere.  She was fully aware that they were going somewhere without her and that hurt her feelings.  I asked her if she said anything to them later and she said, “No, it wouldn’t be worth it to bring it up again!"  I also mentioned that I saw a few of her friends at Women’s Conference down in Provo and I think she might have wondered why she wasn’t invited.  I hope her good friends stick by her and realize how aware she is! 

    Another one of my biggest worries is that one of these days my Mom is going to get lost and we’re not going to find her.  I really hope that never happens!  We had a few instances with my Grandma years ago where she went to take a walk around the block and got turned around.  We lost her for a few hours.  I also dread the day that my Mom can’t be left alone and we all have to take turns watching her.  I know that is the very last thing that my Mom would ever want . . .  to have to be watched like a child!  If and when that day arrives, I will do my best to help her to keep as much of her dignity as possible! 

In a couple of weeks my Dad is going to take one of those medical trips across the world without my Mom.  I’m a little nervous about her being home alone, but fortunately my brother and his wife and little daughter Ashley are living in their basement right now and so hopefully between her and my sister Paige who lives close by, they will keep an eye on her. 

    I really shouldn’t dwell on all these negative points.  I need to be talking more about the positive things for my own good.  All those negative thoughts really get me down and at this moment I have big elephant tears dropping off my face.  I need to pull myself together now since my kids will be waking up soon and I have to go to a primary meeting.  Until next time . . . I love that I have my computer friend to share all my feelings with! :)