November...

I was doing pretty good with this whole "monthly" blogging thing...then August happened...and I've been at a loss for words.  And really busy.
This disease is really horrible...I mean, really.  I don't know when it happened, but it has...I'm uncomfortable around my mom...like I feel like I'm with someone I know...yet not....it's weird.  I don't think you're ever supposed to feel that way around your parents.
I dont see mom as much as I used to...it's just hard....and I feel bad that I don't see her often....but when I'm with her....I just don't know what to do anymore.  When she was able to do stuff, it was a little easier...but now that she isn't able to do as much...it's become quite the challenge to know how to spend time with her.
And I still miss her...a lot.  I miss seeing her - what she looked like when her hair was longer, the gestures she made, the way she would talk to me, the way she would criticize me...yes...I miss her criticizing me.  Who would have ever thought?  I miss just talking to her about life.  I miss being able to pick up the phone and calling her...like after a hard day and you just want to cry...I mean sob...and know that she would understand...or when you have a good day and you want to celebrate that...or you find out good or exciting news...that was always the first call...and now here....almost 3 years later....I still miss it.  I miss her.  Her absence is still very much noticed...
I mean, I know she is still here and this is all stuff I could still talk to her about...but it's not the same....like I can't pour out my heart to her like I used to...it's weird to pour your heart out to someone and not know what her reaction will be...will she smile?  Maybe laugh?  Cry?  Be overly worried about me?  I don't want her to be overly worried.  She obsesses about stuff so easily...I don't want her to obsess about me having a bad day and end up hurting herself.
Speaking of which...she is falling more frequently...which is weird considering she is in a wheel chair most of the time...but still...they keep coming.  I hate that part of this disease too...I never know what to say or do when that call comes...because you know its part of the disease, so you know that it's going to happen...but also, you hate that it happens and are concerned because who wants to hear of their mother falling - ever - much less often??
Ok...I think that I'm finished venting...for now....I may pick up later.

where I'm at right now

I miss my mom.  I miss talking to her - like really talking to her...I mean, we talk now...but it's not the same.  I don't know that I remember the last "real" conversation that I had with her.  I mean, I know that she still knows me...but I feel like she doesn't "know" me...if that makes any sense.  I mean, it makes sense to me...not sure if it makes sense to anyone else.

All I know is that I'm sad and I miss my mom.  I am fighting to not feel forgotten - not by her...but by God.  I know that He loves me.  I know that He is Good, and Wise, and Generous, and Loving.  I know that He cares...that He is faithful...but sometimes getting those connections from my head to my heart....well, I'm a work in progress.  But I'm struggling with feeling forgotten by Him.  The pastor who preached at church tonight mentioned this verse in a side-story, "Can a woman forget her nursing child, that she should have no compassion on the son of her womb?  Even these may forget, yet I will not forget you."  Isaiah 49:15  Right now, my mom remembers me...but our relationship is completely different.  Right now, my mom is like every other sinner that has walked the earth...this disease is killing her...and she may forget me one day - not because she wants to...but because her brain and her body are fading away.  She may forget me...but I have a perfect, heavenly father, who sent His son Jesus, to die and beat sin and death...and one day...those who love and trust Him will be with Him forever.  He has not forgotten me...but loves me...pursues me...wont let me get away from Him - even when I try hard to run away...He won't let me go.

God's feelings for me forever were settled on the cross.  He loves me.  The cross proves how much He loves me.  Now to get all of this from my head completely to my heart...He's working on me.

updates

So, mom has been off the seroquel for about a month now - maybe a little longer and I think she is doing better.

She started physical therapy and occupational therapy a couple of weeks ago.  They want to try to get her walking again and feeding herself again.  We will see how that goes - but for now I am very hopeful.  After her first physical therapy appointment, the PT called me and told me that mom's body wants to move - which is a good sign.

Warning about Seroquel...if someone is prescribing it for you or a loved one...don't fill it.  It's so bad...I think it does more harm than good.  It's so frustrating to think that mom possibly lost the ability to walk and feed herself because of the side effects of Seroquel.  I thought those came from her disease - but apparently, they seem to think that they are side effects of the Seroquel.  SO FRUSTRATING!!!

But, what's done is done, I feel bad for allowing them to give that medicine to mom, but we are moving forward now...no need to dwell on the past.  I'm just going to move forward and warn others to avoid Seroquel at all cost.  

That's really all that is going on here lately.  June has been a very busy month for me.  I haven't seen mom in a couple of weeks - hopefully I will see her this week since I am out of town next week.

Sunday will be my third birthday that mom will not know that it's my birthday...which is hard...a weird day...wanting to celebrate another year that the Lord has allowed me to live...yet wishing my mom was there to join the celebration.  

Time Flies

So, do you ever look up and notice its been two months since you last updated your blog?  Well, that is what just happened to me.  My intention is to update at least once a month....and I just signed on to see when the last update was...and notice it has now been two months.  Crazy...hate it when that happens.

So, now that I am finally updating...what do I say???  I feel like a lot has happened, but nothing, really.  It's crazy how quickly I feel like mom has declined.  I mean, a year ago, she was feeding herself and walking all over the place.  Now she has to be fed and walking seems impossible for her.  Watching her decline has been so heart-breaking.  I struggle when I see her...with the fact that I don't want to see her in the current state that she is in, however at the same time, I don't want her to be alone or feel alone.

She had a bad reaction to one of her medications.  She was shaking/trembling uncontrollably.  We got her off of the medication...but still it breaks my heart knowing that she had that reaction and it took several days for the reaction to cease...

Visiting her can be hard at times mostly because she can't communicate verbally...so we have to be creative.  I know just sitting with her...knowing that we are there is huge for her.  I hate that she can't say my name anymore, but love that her face lights up and she smiles when she sees me.  Though I have to admit that there are many times that I feel like she doesn't really know exactly who I am.  I think she still knows exactly who sister is....but I'm not convinced she always knows exactly who I am.  Familiar to her?  Yes.  But knows that I'm her daughter??? Not quite sure.

It's The Little Things

I'm not sure what it is about new fonts and colors, but they excite me.

Sister and I decided to have a party for mom - and we are having it this weekend.  I'm getting really excited about it.  Shan ordered the cake last night and it sounds yummy.  Hopefully it will be a good weekend for all and mom will really enjoy her party.

Two Years Ago

This past Thursday marked two years since mom was diagnosed with Dementia with Lewy Bodies and Alzheimer's disease.  

It's so crazy... how much has changed in two years. 

It's so crazy... how it seems like it was so much longer than two years ago in some ways.  

It's so crazy... in other way's how it seems like it was not that long ago.

I remember when the doctor made his prognosis, looking at Shannon...we both were very overwhelmed and fearful...and wanted to ask as much as we could...yet at the same time, did not have time to ask him much because mom was angry and darted for the door.  We left the office knowing that she could never be left alone...and had no clue how that was going to look.  

The last two years have been stressful, overwhelming, and exhausting.  We have both grown up more than we could have ever imagined.

I don't like the disease or the prognosis, but I'm thankful for an answer.  I'm thankful for people who take care of those with dementia.  

Letter to Mom

This was a very hard and very therapeutic exercise for me.  I'm not sure that it completely makes sense, but lately I've had this longing to have a conversation with my mom...to let her know the ins and outs of life lately.  I apologize in advance if this is too much to read...or not enough...but felt like I should post it...for now.

Hi Mom.  It’s been forever since we’ve talked, but I figured that I should let you know how I’ve been doing the last few years, since we last talked.  I don’t remember our last conversation together…but I know it has been at least 3 years.  I think you would be proud of me these days.

I’ve quit trying to be happy…rather I’ve started to search for joy.  I’m learning that happiness is fleeting and depends on circumstances, and our circumstances are always changing so I’m searching for joy…and it comes from the Lord.  He has been my constant, unchanging, faithful when I am faithless.  He has protected and provided for me.

I view life much differently now.  I want to live it as much as possible, make the most of the days that I have here,  travel to as many places as I can, and love others well.  I’m learning how to do this as much as possible…it’s a slow process, but I’m trusting the Lord to help me with this. 

I’ve changed my diet…I eat mostly organic or farmers market foods consisting of lean proteins, veggies, fruits, and healthy fats.  I’m also a regular at the gym.  (I know you never thought that would be me.)  I was starting to do this the last couple of years that we were able to talk to each other…and have continued it.  I’m almost at my goal weight.  My “girl days” used to be me unable to find anything to wear because my clothes were too tight…but now my “girl days” are me not being able to find anything to wear because my clothes are too big.  (Don’t worry though – I still enjoy an occasional unhealthy meal and love brownies and cookies for dessert.)

I feel blessed to work at a job that I really, really like, but that also, I feel does not define me.  I have actually been there for five years this last August.  Can’t believe that…never thought I would be there that long. 

I’m not sure if you remember this, but I bought my first car a couple of years ago.  That was pretty scary…but Civie is holding up well.  But I also miss the CR-V.  I think I’m meant to be a SUV driver.  I remember the first time that I told you that I wanted a SUV and you flipped out…telling me how unsafe they were…but after a little time…you gave in…and bought me my first SUV for high school graduation.

I bought my first house a little over a year ago.  I wish you could come see it.  I wish that you could have gone around town with me as we searched for the house…I know that you would have enjoyed that.  

I know that you always wanted for Shannon and I to be close and be good friends…and we have definitely become much closer the last several years.  And I definitely consider her my friend.  Mom, you would be so proud of her.  She graduated college, and is now on her second post-college job.  She’s a successful, hard-working girl.  She has two cats…and they are her world.  You’ve met them once before…you loved them. 

I’m allergic to cats…I had very strong suspicions, but we found out for sure the hard way about six months ago.  My air conditioning went out, so I went to Shannon’s apartment to stay the night…I fell asleep and felt that my eyes were really, really itchy.  I tried to sleep it off because I was very tired, and ended up getting up about an hour later to find that my eyes were completely red, and swelling up.  I moved to the couch and put a wet washcloth over my eyes…by the time that Shannon got home, my eyes were swollen shut and I was having a hard time breathing.  Shannon took me home to my hot house (it was 90 degrees at 3am) and helped me open windows (it was 3 in the morning at this time) and turn on fans and get wet washcloths to lay on my face.  So, now I don’t hang out around the kitties for too long.

Oh, I almost forgot to tell you…Shannon and I are both running our first half marathon this month.  We are in the middle of training….it’s almost down to crunch time!!  I still can’t believe that I’m doing this…but I’m excited about it…most days anyway.  Crazy, huh?

Can you believe that I’m going to be 30 in a year and a half????  I can’t either.  My hair is the longest that I think it has ever been.  I have decided to grow it out until I’m 30..and then I will go from there…don't worry - I'm still trimming it occasionally, keeping it neat, you know.

I still watch Gray’s Anatomy…honestly that’s one of the only shows that I “commit” to.  I remember we used to watch it together…I mean, I was in Lewisville and you were in Wichita Falls, but we’d call each other at the end of the show to “discuss.”  I really think they should have a warning these days for those that have a family member that has been diagnosed with dementia. 

Mom, I know that I say this a lot…but usually not to you...I really miss you…a lot.  I am so thankful for the times that we had together.  I have so many sweet memories of you.  Losing you is the hardest thing that I have ever gone through and watching you suffer has been the most heart-breaking thing for me.  The Lord has been there with me when life hurts and doesn’t make sense….and that has been quite a lot these past couple of years.  I just want you to know that I love you, and am so thankful for you, and so thankful that you loved me…that you still love me.

It's Hard To Remember Blog

This month has been kindve hard.  What can I say...I hate, hate, HATE this disease.  It's hard, it's frustrating, and it's painful.  I can go on, but right now, I have no other words - other than I hate it.

This month started with quite the scare on my end.  I was talking to the head nurse at mom's assisted living place, and she said "the only thing keeping her from qualifying from hospice care is the fact that she has not lost weight."  I was not sure how to process that.  I asked her for more of what she meant by that and she said that mom has severely lost several abilities really quickly: feeding herself...she can eat, but feeding herself rarely if ever happens, she's losing the ability to walk.  So, that kind of freaked me out quite a bit.

Found out later that it's not hospice how I typically think of hospice but rather a medicare benefit that gets her more care that typically occurs that last 6 months to 12 months of the disease.  Not a good thing by any means....but not as bad as I originally thought.  But still...processing all of that has been quite hard this month.  

We are planning a luncheon party for mom.  I got the invitations in the mail yesterday...they look really good...excited about getting those addressed and stuffed this weekend, so they can get out early next week.

Really that is all...it's been another difficult month...but I'm excited about planning her party and throwing her a little celebration.