Saturday, September 29, 2012

Take that Alzheimer's!


So I mentioned in my previous post that people left comments and sent messages that meant a lot to me. 

Here are a few of them (without names). 



      I wanted to message you privately because I want you to know I am sincere in what I am 

      saying. I love your family so much and feel like we've all known each other for way longer than 

      we really have. I also know (because of many of my own personal and family struggles) that 

      nothing anyone says really helps, at least until you have had the time to adjust to the loss you 

      are experiencing/have experienced. Remember that you get to teach your future children about 

      who your mother was by showing them what she taught you and who she helped you to be. I 

      know that thought won't fix it or make it hurt any less. But I love to see you and everyone in 

      your family and how much compassion and love you learned from both of your parents. I can 

      see just from watching as an outsider that your mom taught you to love your faith and stand firm 

      in your testimony and I hope I can teach that in my home because it is amazing. Please know 

      that I mean it when I say that *husband* & I care about you and your family and how you 

      are feeling. We love you.


      Glad you are working through it, keep talking it out.


      Maquel I cannot even imagine going through what you and your family are experiencing. I am thinking/praying for you and your family.


      My heart goes out to you and your family. I am thinking of you all.

      So yeah blogger is tweaking out because I copy and pasted from Facebook and Word so the format is a little weird. Once again I appreciate all the support, and all of those who shared such thoughtful sweet words (those that are on this post, and elsewhere). The first comment on this page gave me an "ah ha!" moment when she says, "Remember that you get to teach your future children about who your mother was by showing them what she taught you and who she helped you to be." Aha! Alzheimer's can't take that away, so I win! That is one of the best feelings in this situation, feeling in control of something related to it. I feel that is part of the key to surviving it, finding the things you can do about it and doing it so you don't constantly dwell on what is out of your control. Life is full of  both things we can change and things we cannot. The key is finding those that we can change and doing something about it. Which usually ends up being things we can do that will make those things that we cannot change more bearable. I refuse to accept the notion that there is nothing I can do about this or any other thing in my life. There is always something. 

Wednesday, September 26, 2012

Thank You.

So I have received many comments through Facebook of love and support and I cannot tell you how much that means to me. I hope you realize that I post these for me, and I am not trying to get attention. Although I really appreciate the comments, a lot. I just don't want people to feel like my blog is all "WHY ME? POOR ME!". My main reason for doing this blog is to vent things out and work through my feelings. I'm starting to find that it is becoming more than just that. Many people have told me how much they appreciate me sharing my feelings on the situation, how I have opened myself up. To those I say, your very welcome. Many times I have wonder and still wonder "Why is this happening to her?". I think those who have been touched by my story are one of the reasons "why". So thank you for that, it is beyond words how refreshing it is to find answers to my "why" question. For those who have reached out to me I will get back to you, sorry it is taking me a little while. Last post was very...draining? is how I can best explain it. That is why I have not responded and I promise I will in time.

I went to counseling today. I have seen a counselor off and on throughout my life for varying reasons. Today we talked about the "Alzheimer's Can Go To Hell" post. He is the one who encouraged me to post it. I wasn't sure if I wanted to display such strong emotions of anger but that is all apart of the grieving process. I read him the comments and messages people gave/sent me. He told me that I should keep at it, because it could help a lot of people. With Alzheimer's you feel so helpless and hopeless. There are so many unanswered questions, and no cure. There is still SO much that they do not know about it. With so many other diseases there are treatment options, but with Alzheimer's there are 0. As in nothing to try to cure it, only medications to mask the symptoms. Which do not get me wrong I am very grateful for. I am not looking forward to the day when my mom no longer responds to medications. One day at a time right? Anyways, what I am trying to say is I have found a glimpse of Hope. Hope that through sharing my thoughts, feelings, and insights I can help others in whatever circumstances they are in. Hope that one day their will be treatments for those with Alzheimer's, doubtful in my mom's life but someday. One may ask why do you not have hope that they will find a cure for your mom while she is still alive? Well my mom could live anywhere from a couple more years to many more years, so for the sake of not driving myself crazy I hope that there will be options someday,  instead of a specific time frame. Also the damage is already done to my mother's brain and I'm guessing the first step will be finding a way to stop the progression, which it is already to late for her.

So the plan is to keep chugging along by writing in my blog and just living. The last couple of days since finishing writing/posting the "Hell" post have been rough. Has anyone ever sucked at feeding themselves? This last week has been a struggle. I have been depressed so I don't really want to eat, I don't really want to do much of anything. Which is okay, it is healthy to get depressed now and again and not surprising given the circumstances. So yeah I have been kind of feeling like an infant unable to take care of myself, okay not that extreme. Although the fact that I sharted myself yesterday begs to differ. Yes you heard me right, it happened. First time for everything am I right? I share this with you because it is FUNNY and I have decided that humor is my second love. It has been really helpful this last week. It also helps to be married to a goofy/funny guy who is a blast to be around. Go Nate! If you can't find the humor in life then accidently poop a little in your pants and you will, that is my mantra for the day (possible life) . Oh and I have a job interview Friday, yay! Crossing my  fingers this will be the one! Over and out.


Maquel

Saturday, September 22, 2012

Alzheimer's can go to Hell.

This is the thought I have had on this trip home when she (written while home);
  • Doesn't want to see her grandchildren because it is to much for her to handle.
  • Gets lost at the age of 56.
  • Can no longer shower herself.
  • Needs me to button her pants.
  • Needs someone to cut her fingernails.
  • Can't form a word while speaking.
  • Can't dress herself.
  • Gets confused.
  • Asks if it is her fault.
  • Forgets what I just told her.
  • Has to go up and down the steps one step at a time very slowly.
  • Gets an emotionless glazed look on her face as though absolutely nothing is going on in her brain.
  • Can't read.
  • Can't write.
  • Has a hard time following conversations.
  • When I try and guide/hold her hand it tremors and twitches.
  • After showing her exactly how to use a soap dispenser at a gas station her trying so hard but not being able to do it by herself.
  • Her throwing a two year old tantrum twice (fortunately this does not happen often).

(Cont. After getting back from trip)  What is difficult;
  • Not being able to talk to her on the phone because she doesn't know how to use it anymore.
  • Not being able to talk to her about my worries, concerns, and fears because I don't want to burden her and she will most likely forget it next time. 
  • I long for my mother who is no longer there.
  • I have to watch what I say so she doesn't get upset about something.
  • Aching and longing for someone who is no longer there but is still there physically.
  • When I remember what is going on to the full effect and acknowledge what is, what is to come, and what has been lost already.
  • When I find myself racking my brain trying to figure out why I feel so crappy only to realize it is because of my mom dying.
  • Avoiding seeing the parts of me that are from her because it reminds me of who she was and no longer is.
  • Keeping my distance from my religion which deep down I have a passion for, because it hurts to always be reminded of her and what she taught me/showed me was true.
  • When my heart aches more than words can express, and I feel so much loss.
  • When I get angry, and bitter. 
  • When I get so frustrated as to why her.
  • That my children will never meet my mom, and that Nate didn't get to meet her when she was fully herself. So not even he fully understands my loss when I am struggling and need to be comforted.
  • When people ask how she is doing when they don't really want to know the details.  
  • Watching my dad through it all, amazed at how positive and strong he is most of the time.
  • That I lost one of my best friends.
  • That I lost one of my sure voices of reason.
  • That I lost my mother. 
  • Not being able to have any closure, despite the great loss.
  • Not knowing what to do, and feeling so helpless.

Tuesday, September 4, 2012

I talked with my mom the other day...no really.

   So I am pretty sure I am on the brink of my period and the week before it I am always insane. I wish it would start and then I get go all crazy so I could pinpoint exactly why I am feeling so nuts. Okay so I am not really insane it's just that my Anxiety, OCD, and Depression reach a whole new height the week before. I take medications which do a pretty good job of keeping things under control along with getting good sleep, exercising, and eating well. Thank heavens for modern medicine otherwise I would most definitely be in a loony bin or worse.


   Anyways, so my point is I was having a rough day. My illnesses where off the charts and I was miserable. I don't really talk to my mom about my daily struggles or any struggles for that matter. I use to but with this disease of her's it: 1. Causes her to be able to hold the phone and talk into it anymore because she can't figure it out for the life of her. 2. Her memory is very hit or miss with things that haven't been for a long time, which struggles then to be current and new. 3. I don't want to upset her because depending on how she is doing she can get very upset about things. 4. Even if I do manage to talk to her on the phone I can't read her so I don't know if  it is a moment of clarity for her or repeat where we have the same conversations a couple times in a row.

   So that night she could tell I was upset and I told her how my brain was telling me I was fat and had gained a bunch of weight on the trip. She grabbed me by the arms and pulled me into her room putting me before her glass sliding closet doors and said "Kelli you are thin, you are just fine. It is just your brain, your just fine." In that moment I knew I was fine and my brain backed off for the rest of the night. My mom was there in that moment and she has done it again, she had given me peace. In high school I struggled with my brain in this manner constantly and she was always reassuring me that I was doing just fine when it came to school, homework, church etc. She was my daily sound board and quite honestly got me though those years before I got on medication. Her voice was the one thing that could stop the OCD from torturing me constantly, the voice of reason. In that moment of need for me Heavenly Father had blessed her to be well enough to be that voice of reason again, and to bring me peace.

   I went into my room and sobbed. I cried because of the wonderful moment we had just had and because of how much I missed that. Being comforted and consoled by my mom and her helping me in my times of need. I had forgotten what it was like and it was bitter-sweet. At that moment as I was crying in my old room and I wanted her so bad, and ended up crying out for her. I didn't expect her to come or even hear me but soon enough I heard her walk up to my closed door, I stopped crying because I wasn't sure if I wanted her to know something was wrong. She said "Kelli, are you alright?". I opened the door and told her how I wish she wasn't sick. At first she thought I had said that I wish I wasn't sick. I remember her saying; "Kelli you are such a wonderful girl, and you have a good heart. I am so sorry you have to go through this, I love you so much." After I told her I meant I wish she wasn't sick she went on to say, "Oh Kelli I am fine, it's not that hard. I'm fine you don't need to worry about me." She really meant it. I really felt like I was talking to my mom, like she was peeking out from the Alzheimer's haze and it was wonderful. It was as if I was talking to her how she was years ago when the disease wasn't so difficult and she was mentally aware.

   I really hope I have more moments like that where I feel like I am talking to my mom without her Alzheimer's. The mom I cherish and remember, and hold on to seeing again in the next life. Gotta love the Counting Crows lyrics; "Don't it always seem to go that we don't know what we got til it's gone?." Isn't it so true? Ah...life.


Maquel