"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!