A Week of Ups & Downs

I want to give you a warning up front - usually my posts are of stories about my mom, that you can laugh & giggle at, even though its because of the Alzheimer's.  This post is somewhat different, & more emotional, at least for me.  Its long too - my way of talking it out.  Sorry!

Early last Sunday morning, I woke up to Hudson screaming & Wes calling for me.  Hudson had fallen off the bed at my parents' house.  Wes & I originally took him to the Minute Clinic Sunday morning thinking he had strep throat, only for Hudson to start complaining about his arm hurting while we were waiting to be seen.  They referred us to Urgent Care to get x-rays.  We were heading home that day with my mom & dad following us to spend a few days.  I ended up dropping Wes & Hudson off at Urgent Care & went back to get our stuff & Sadie & still made it back before they doctor saw him - turns out a cracked collar bone & most likely strep by the way it looked.   My parents waited until the doctor was almost done & just met us at the drug store to head on down the road.  So, at 4:45 PM, off we took on our adventure home!  My mom, looking annoyed, wasn't sympathetic like a Nana/Mom normally would be.  She was just tired of waiting & wanted to go!

We got home around 11:30, after several unexpected stops due to my daughter's car sickness - good times.  My mom was still in a good mood & I guess she had asked my dad several times where they were going, & I'm assuming his answer was "Jennifer's house!"  As I was bringing only the necessary items in from the car, she looked at me and asked, "well, Where's Jennifer?"  Lol, not sure who I was at that moment, & I was too tired to even go there.  

Monday was a good day.  My parents kept Hudson while I went on a field trip with Sadie, then we went out to dinner that night.  Tuesday, we ventured off to St. Augstine, just 30 minutes away, to look around & have lunch.  I could tell she was off that day.  She didn't want anything I had for breakfast (first time I felt like I had failed her that day).  We tried to walk around one of the national forts, but when we got up there, we discovered it was closed due to the stupid government shut down - slightly annoying!  We went to lunch then & the real fun began.  She talked about how many times she & my uncle Bob had been to that place before as we waited our 20 minutes for our table.  Once we got to our table, Hudson was getting fussy with his meds wearing off.  Mom insisted the place had fried squash because she had gotten it she didn't know how many times before.  They did not have fried squash by the way.  After 15 minutes & only a few looks from others around us in a small restaurant, we got our food ordered, ate, & got her a to-go drink to take with us.  We got back to my house about 1/2 an hour before I needed to go & pick up Sadie from school.  She had her drink & while I was busy doing something with Hudson, I heard my dad say, "take your drink back into the kitchen hun, they don't drink over here".  Mom got very defensive & said she was fine that she doesn't spill.  (We have a brand new house with carpet & Brand new furniture on top of that!)  I jumped in bc usually my sisters & I can redirect her easier than my dad (I look at it like I do my kids - they listen to their dad better than me because I'm with them all the time!).  I quickly explained that we don't allow Hudson to drink over there, & to make it easier for him to understand, we just don't drink over there.  Well, my mom quickly declared that "THAT ISN'T MY PROBLEM & THIS USE TO BE MY HOUSE THAT BOB BUILT & I DON'T SPILL SO I CAN DRINK OVER THERE".  Well, while I was trying to collect my thoughts on this & decide where to go next, she declared she should was just going to sit in the floor because I didn't think she was good enough to sit on the new furniture.  Have to admit, I did chuckle at that!  But then came the punch in the gut - my mom looked at me then look at my dad & said the words, "I can't stand her.  She's so hateful."  Wow.  The words "its the Alzheimer's, its the Alzheimer's, its the Alzheimer's" were repeatedly going through my head, but it didn't stop the tears from leaving my eyes or the hurt that hit my heart.  I quietly got up, rushed to get Hudson's car seat back into my own car because at this point, I can't leave him there with them, & with 5 minutes before school is getting out, head to get Sadie with Hudson.

Then, the sky opened up & it started to pour - figuratively.

Two minutes from the school, my phone rings.  I'm still trying to collect myself to answer it & find the school calling who has Sadie in the office crying hysterically from a sudden headache while packing up for the day.  I had to sit in car line because I couldn't get through & I finally got her in the car & they told me she had drank some water.  A minute in the car, she threw up everywhere.  Deep Breath, Jennifer, Deep Breath was all I was saying at this point.  I switched to mommy mode & pulled over, cleaned her up as best as I could & drove home.  I got Sadie changed, tylenol given, & into bed.  I knew at this moment, it was my fault, she had her first migraine, which with out a doubt, she inherited from me, which I inherited from the woman who currently can't stand me.

At this time, I go back out to clean my car, calling Wes to see if he could just pick up some pasta sauce on his way home from work.  Guess what?!  He had been to minute clinic that morning & was already on his way home because his boss sent him home because he sounded so terrible.  Joy!

Need a recap - 3 year old with strep & a cracked collar bone, 5 year old with a migraine, husband sick, & a mother who currently is so mad at me over not being able to have her drink on my new sofa, & nothing in my house to cook for dinner.

At this point, no matter how old, its pretty safe to say, that all I wanted was my mama.  Just a hug, someone to take over dinner, or just say it's going to be ok, none of which I got of course.  Sometimes I feel really selfish saying the words, "I miss my mama."  I have friends & family members, that don't physically have their mama & would do anything just to sit beside them, look at them, hear their voice, or see their smile.  And I was so lucky to get to have my mama for as long as I did because others haven't been as fortunate.  But I don't have my mama either, no matter if I can sit there and look at her.  She doesn't know me as her daughter, doesn't hug me like she's my mom.  And its so frustrating, looking at her & not seeing that love back.

At this point, I did the only thing I could do - I prayed, & I prayed hard.  I took a deep breath, then got started.  I stripped the car seats, & got the covers in the washing machine.  I cleaned the seat, floor, & floor mat of my car.  I checked on Sadie to find her still sleeping away & luckily with no fever.  Wes had gotten home & went straight to bed.  I put Hudson in the bed with him & turned on a movie.  I checked on my dad & mom & told them I was running to the store.  He suggested he could take me to get my mom out of the house.  I agreed, because a change of scenery usually helps when my mom is upset.  When we get to the store, of course its too cold for my mom & they go back to the car.  I find myself hurrying, just getting the essentials, not wanting to make her any more frustrated with me.  Of course, it didn't work!  I get home & whip up some spaghetti, my mom's go to meal on busy nights when we were growing up.  Sadie woke up, headache free & smiling.  The day might be looking up.  Spaghetti, even though I had gotten small penne pasta to make it easier to eat, did not turn out to be a good choice.  My mom kept dropping it on her, & with each drop, I got a dirty look (lost count by now on how many times I felt like I failed her that day).  By now, thank goodness, its time for my kids' baths & bedtimes.  When they finally went down, I had to put the car seats back together, that's never fun, & get them back in the car, then make Sadie's lunch & get everything ready for the next day.  I was exhausted.  I finally got in bed, cried a little, prayed a lot, & fell asleep.

I'm not sharing this to get any sympathy.  I don't want any.  I'm sharing it so you can see what a day is like for someone who has Alzheimer's & their care givers.  I truly don't know how my dad does it.  Granted, I was dealing with a sick family on top of her, but still.  It was just one day, not 24/7.  I know her days are full of ups & downs like this - some days are full of lots of ups, others are full of lots of downs.

Wednesday morning was somewhat better.  We all went to Sadie's school first thing to see her in her fun run for their school fundraiser.  I'm not sure if mom enjoyed it or not, but she seemed ok.  Sadie was happy that they were there to watch her run, & that made me happy.  We went to breakfast & then dad has decided they would go ahead & leave after that.  Mom was still off, I could tell.  I was sad to see them go.  I was sad that she didn't have a good experience the first time & possibly the only time, she visited my new house in Florida.  As a daughter, I want nothing more to protect her, & make her feel safe & happy as she goes through this journey of Alzheimer's.  I know I can't do that all the time, but I felt like a huge failure with this visit.  I felt like I failed my mother, even though I know it was things out of my control.

We don't use the word 'stupid' in our house, nor do we use 'hate'.  With that being said, I truly, with a passion, hate this stupid disease known as Alzheimer's.

Keep praying for a cure my friends & for strength for my dad & all care givers out there.  

Jennifer

Heard from Jennifer lately?

For those of you that don't know, I'm in the middle of a move. The movers came & packed us the end of last week, but we don't close on our new house until the end of this week. Who wants to spend a week in a hotel with 2 young kids?!  So, for the week in-between, my kids & I came to the beach to spend some time with my sister & brother-in-law.  I asked my dad if he & my mom would come down as well so we could spend some time with them as well before our big move (we'll be a little over 6 hours from them).  They came down & we've all been together since last Thursday afternoon. 

I have to be honest, it's been hard seeing my mom this week. Don't misunderstand me; I love seeing my mom, & for 90% of the time this week, she's been happy & in a great mood. But, she's slipping farther & farther away from us.  This week, I'm a friend from high school, not her daughter. The same thing goes for my sister Lisa & brother-in-law Tom. We've been "reminiscing" all weekend. She's constantly saying things like, "gosh, I'm so glad we're all back together", or " remember when we use to do this in high school?", no matter what the activity is. I've found myself having to say "Mary" a lot more to get her attention rather than the normal "mom" or "nana", which even if it's a day I'm not her daughter, she's always responded to.  My heart breaks most for my dad. I can't imagine what he feels when she looks at him & saids, "well, where are you living now?", or as she said a few days ago, "well I married somebody else." when we were discussing the family that she has right now. 

Here is the conversation we had this afternoon after I came down from putting my kids down for a nap:

Mary: "Have you heard from Jennifer lately?". ( FYI - I'm Jennifer!)

Me:  "I actually just talked to her."

Mary:  " How's she doing?  I think she's moving again.". (she remembered that I'm moving!)

Me:  "she's good, you know with her 2 kids she stays pretty busy. She's coming down to see us here really soon." 

Mary:  "well, good. It's about time. But she's moving & she takes forever to pick out a house." (what?! What does that mean. Lol!  I'm a pro at house hunting)

Me: (defending my house hunting skills) "well, she had to look at school districts this time because Sadie is starting Kindergarten & this move is further away, so I think it took a little longer than in the past."

We kept exchanging small talk about Jennifer for a few more minutes until Sadie came down from her rest time for a snack, then it was on to something else. 

I know some of you are thinking right now, "why didn't you just tell her you are Jennifer?". If I did that, I risk making her feel very confused, stupid, or she could get angry at me. There was no harm done just playing out the conversation even though it was very difficult. I was chuckling inside, bc after all, it's weird talking about yourself in the 3rd person, but here was my own mother asking me about myself. I'm still not sure who she thought I was during the conversation. 

Now, here's a good laugh for you: tonight, we went out for ice-cream. Mom's favorite is peppermint, but it's only seasonal around Christmas. As she was eating hers she wondered outload if "they had peppermint in the wintertime". Lisa & I said we would all have to come back & check. Lisa added that we could maybe come back for her birthday since it was during that time, but that she couldn't remember the exact day. To our surprise, mom said her birthdate!  I then asked if she was going to be 21?  She automatically agreed, then it clicked a few seconds later & she laughed!  Lisa said you're only as old as you feel, to which mom replied with yep, at least I'm healthy.  (here's the funny part-) then she said, "and there's nothing wrong with my memory!". Bless her!  I almost spit ice-cream in her face, lol. 

I'm glad she's in a place where she doesn't realize anymore, because when she knew she was losing her memory, she was in turmoil.  But with that comes losing her more & more moment by moment it seems.  And now, here I am, moving from 3 hours away to 6 hours away from her, as she's slipping further & further away faster & faster.  All I can do is ask for prayers friends, & be thankful for my Skype!

Jennifer  

We're at the Beach House

Hi friends.  Its been a while.  Things have been crazy for my family - we're in the middle of a move to Jacksonville, Fl, in which Wes has been there since May & my kids & I have remained in Moncks Corner until we found a house & all that goes along with that.

I've talked very little to my mom about our move.  I know at the stage she's at, she won't remember, & it could very well become a huge stressor for her in that moment.  Even so, between over hearing moving talk, & Lisa currently traveling, I think she's a bit confused at where I'm actually at.

Last night, we called on Skype, like we do most evenings.  As soon as she sat down, the house phone rang, & my dad went to answer it.  It was then just me & my mom.  She was very cheerful (a nice surprise!) & asked me how I was & then asked where I was now.  I replied that I was at "home" & told her we had been to the grocery store, etc.  One of the hardest things I've had to learn to control over the past couple of years is my laughter, & I'll tell you why.  Her next sentence was, "we're at the beach house & wish y'all were here too!"  She was sitting in their living room of 30 years in Inman.  I know they've had a lot of rain lately, & their backyard very well might look like an ocean.  Who knows!  Or maybe that beautiful view of the blue ridge mountains they have looked like the blue of the ocean on that particular day?  Which ever it was, she was happy & told me they were having a great time!  You learn to go with it, especially when its a happy moment.  I told her I wished I was also at the beach house.

What makes it an even better 'laughing through the tears' moment is that even though she didn't recognize her house of 30 years, my daughter jumped in my lap about a minute & a half after the beach house comment & she automatically said, "well hey Sadie Grace!", without skipping a beat.  Once again, the crazy world of early onset Alzheimer's has given me a headache.  She doesn't remember she's at her house, but she remembers my 5 year old's name?!  Don't get me wrong, I'm ecstatic she remembered Sadie's name, there are times when she has trouble getting it out, & I know they'll be a day when she won't know it, but its so frustrating that she remembers something so new, but forgets something so familiar, & doesn't feel like she has a home even when she's at the house she & my dad planned & built 30 years ago.

By then, my dad was back, & they went on talking to Sadie about her day & trying to get Hudson to come over & say hey (he's 2 & doesn't really like to sit still to Skype!).  Sadie was my typical silly 5 year old who can read her Nana J's mood so well & kept doing stuff to make my mom laugh over & over.  I have such an amazing little girl!  & my mom's laugh, such a beautiful sound!  I don't get to hear it enough anymore.  I think the biggest lesson this horrible disease has taught me is to treasure every single moment of joy, no matter how big or small, & make as many memories as possible, even with the little stuff.  I know for the rest of my life, God willing, I will be able to look at the computer & "see" my mom & daughter on Skype making silly faces back & forth to each other, & both of them giggling like crazy.  Isn't it funny how silly faces can bring tears of joy & sadness to my eyes?!

Cherish every moment you have with your loved ones friends!

Jennifer

How's Wes?!

A few weeks ago, I went up to Inman by myself, to spend a long weekend with my mom & dad.  At this point, I hadn't heard my mom say my name in several weeks.  Here it was, the middle of January & it was before Christmas since she had called me Jennifer.  Usually, she would refer to me as "mom" if Sadie or Hudson were in view or just wave her hand at me so I would know she was talking to me.  I was okay with this.  I knew she knew who I was, not necessarily her daughter, but she knew me.  Most of the time, she was still able to call my kids by their names.  Every now & then, I would hear kids, or girl if she was talking to Sadie over skype.

I drove up on a Friday afternoon, so I just met my parents at a restaurant for dinner that night before going to their house.  We order our food, sit down, & start to eat.  She had told me hello & asked how I was in the parking lot, but never said my name.  So, imagine my surprise, when she just looks at me & said, "How's Wes?"

Now, for those of you who don't know, Wes is my husband.  We are coming up on eight years of marriage in May.  Granted, we started dating when I was eighteen, & I'll be (yes, I'm going to say it) 33 on Tuesday (feel free to send me a gift, lol!).  So, Wes has been around a while.  But, I have been around for almost 33 years, not to mention the nine months & 10 days (because I was 10 days overdue!) that she carried me before giving birth to me.  See, in most Alzheimer's cases, the newest memories go first, & they usually remember the memories from childhood the longest.  In my mom's case, its not like that.  There have been gaps, big ones at that.  Why can she remember my kids' names but not mine?  Its crazy!  Then, she asks me, "How's Wes?" when he's not there, she hasn't seen him since Christmas, and neither myself or my dad has mentioned him!  I've always known they love Wes, but this takes it to a whole different level.  

Wes, of course, thinks its the best thing ever!  In his mind, my mom confirmed that he's her favorite!  I approach it as at least she knows Wes is part of my life, and she cares about him.  We have to take the reminders anyway we can now.  I know there will be a day, when she won't remember Wes' name, or my children's names, or who I am.  But for now, I'm cherishing every moment, even if that means that Wes is her favorite, lol!

Jennifer

Big Tummy

I've had lots I can write about from the past couple of months, and I will soon, I promise.  But tonight's story is more about my sweet daughter, Sadie, & her thoughts on my mom, or Nana J to her.

Sadie will be 5 on Valentine's Day.  She has one of the biggest hearts I've ever known, especially from someone so young.  Back in the fall, I knew Sadie was beginning to pick up on my mom's Alzheimer's, mainly the repetitive questions, & lack of interest in playing with Sadie when she asked.  God gave me the words to explain Alzheimer's to Sadie & what that meant for us & Nana J.  I, of course, explained it as simply as possible, letting Sadie know that Alzheimer's is something some people develop when they get older & that it causes you to repeat yourself a lot & forget things really easy.

She understands that is a sickness, but not one that Nana J can go to the doctor for & get medicine to make her all better.  She remembers the word 'Alzheimer's', & can say it probably better than most adults.  She was very involved in the Walk to End Alzheimer's last September.

The past several months, Sadie has begun to get into chapter books.  I love to read, and she told me a while back that she wanted to read a big book like I do.  Last time I was up in Inman at my mom & dad's, I went to the basement to my old childhood playroom, and checked out my bookshelf.  There is was, my copy of Charlotte's Web, from when I was in elementary school.  I brought it home & we started reading it that evening.  We read just a chapter every night at bedtime, sometimes even just half of a chapter depending on the length.

Tonight as we finished up her chapter, she asked me what I did when I was a little girl.  We talked about how I liked to play games, play outside, do puzzles, & read.  She asked who read Charlotte's Web to me when I was little & couldn't read yet.  When I told her Nana J did, her reply was, "so she didn't have Alzheimer's then?"  Isn't it amazing the level of understanding children have?  Just one little question blew me away, and took me back to sweet memories of my mom & I during my childhood.  Of course, Sadie always asks more & I cherish these times when I get to tell her about her Nana J, the true Nana J, that she doesn't get to experience.

Just as I was beginning to get teary eyed, in true Sadie fashion, she then asked me, "Did Nana J have her big tummy when you were little too?"  I love that little girl!  We laughed, and then she told me how much she loves Nana J's big tummy.  She then went on to inform me, "that sometimes when you get old, that means you've been around a long time, your tummy can get really big like Nana J's."

I imagine telling my mom this story, & I can hear her say, "Gah" as she's laughing with her wonderful laugh.  I miss conversations with my mom so much.  I miss getting a phone call from her just because she wanted to call.  I miss getting a real hug from her, & not just a "copying everyone else because they're hugging"hug.  I miss hearing her tell me she loves me, and not just saying "love you too" after I tell her.

Now, I focus on the memories from throughout the years, & making new ones, just on a different level.  I also have to focus on the things that I can, like loving her big tummy!

Jennifer

Taking the Hurt Out

Hi everyone.  It's been awhile, huh?!  Things have been crazy with our family here lately.  We've found a doctor in Charlotte for mom that we all really like.  Although, she's having more bad days/moments as of late.  We're just taking things one day at a time & cherrishing everything!

A few months ago, right before the end of summer my mom & dad joined the YMCA.  We thought it would be great for them to be able to get a little exercise while also getting a little socialization & getting out of the house.  We got them going to the Silversneakers classes specifically geared towards their age group.  They love it, especially my mom.  She talks about going to the Y all the time.

Well, not long after they started, I joined my local Y & go to some of the classes while my daughter is in school.  I was talking to her one day about it & telling her how sore I was after a core class.  She then proceeded to tell me, that her brother, my uncle, had figured out a way to take the hurt out of working out.  I literally had to put my hand over my mouth to keep from laughing out loud.  My uncle is & will probably be the smartest person I have & will ever know.  With that being said, he's still not smart enough to take the hurt out of exercising! =)

She told me that one day, her brother (this is how she refers to him, even though I know him) asked her why she thought people didn't like working out & exercising.  Her answer was that they were sore afterwards, so he & some friends figured out how to take the hurt out!  Then he taught the ladies that teach her classes at the Y how to lead the exercises without making people sore.

Of course I didn't have the heart to tell her that the reason she isn't sore was because she's not pushing herself & all of that good stuff.  I'm just glad she's moving some, meeting new people, & has something to look forward too.  My dad on the other hand, has been sore several times from the same classes, lol!  Everytime I mention being a little sore from working out, she'll tell me that her brother figured out how to take the hurt out! =)

Jennifer

Retired at 34?!

As you know from my last post, my parents came down for a one night visit close to the end of February. I've lived in the Charleston area now for just a little over a year.  So, just like every other time she's visited, my mom asked if she thought we would stay here & how we like living here.  My husband works in management with the railroad.  We move a lot.  In the past 5 years, we lived & owned 4 different houses in 4 different cities.  So, of course, we aren't going  to stay here.  My answer every time she asks is, "We really like it here, but I'm sure we'll move somewhere else eventually, but hopefully not too soon."  Somehow though this last time, she got it in her head that we loved it here & we were not going anywhere else.  In fact, we love it here so much that Wes, my husband, retired & we're staying here.  Wes of course thinks this is the funniest thing ever.  He said he would love if he could & had enough money to retire at the age of 34.  Of course, this is absurd since my husband isn't anywhere close to retiring age, & anyone in their right mind would know that.

We were on vacation a couple of weeks ago.  We went to Tennessee to visit Wes' grandparents.  We split the trip up, and went to my mom & dad's for the night, then on to TN the next day.  Of course, the first thing my mom asks Wes when we get there is how he's enjoying his retirement, & its even harder to explain because he rarely gets to travel unless he's on vacation.

The funniest thing though, is when she asks me what Wes is up to when we are skyping.  When I say, "working" without thinking, she looks at me like I've lost my mind.  =)  Who knows how long Wes will be retired for.  Hopefully not too much longer, because we will, eventually, get transferred again, & I'm sure that will be very confusing for my mom.

The hardest thing about this situation though, like many other situations we deal with with my mom, is understanding why she can remember things she has made up to fill in the blank spaces, but can't remember things that she likes to eat or our birthdays.  The brain is an amazing thing.

Until next time, I'm enjoying my husband's retirement......

Jennifer