Friday, April 12, 2013

Will Mom Get Better?

In the 2+ years since Marcia’s diagnosis, Ryan has never initiative any conversation with me about Marcia’s health and I’ve been selective as to what and when I’ve raised the subject.  Last week he did so twice!  I’ve written here before that I’ve not been sure if I’ve been handling things with my kids the right way.  I feel that I’ve considered the right things and have made informed decisions based on what I’ve felt was right.  But I’ve often wondered if I would regret not doing more or handling things with them differently.

With Riley, it seems we talk more often about a variety of things than we did a few years ago, but I’m careful not to push her farther than she’s comfortable with regards to Marcia.  I’m so proud of how she’s handling her emotions, how she’s helping out, and how she hugs Marcia from time to time.  In spite of her mom’s illness, she’s amazed me with how well she’s done in school.  She also seemingly knows what she wants to do in college and with her life (wish I did…).  She’s very comfortable in her own skin and has a good head on her shoulders.  Over the last 6 months, she’s definitely grown up as she’s been thinking about college and been more open and willing to let other people know about what’s happening with Marcia.

Ryan is only 12 and I’ve been much more cautious about how much I’ve shared with him.  Until this week, he’s sort of just lived with Marcia’s speech issues and hasn’t ever felt like talking or asking any questions.  Monday night, I took Ryan to the doctor to have his foot looked at (he’s had pain in his heel for a few weeks).  On the way home, Ryan asked “will mom get better?”  I’ve had two years to think about how to address Alzheimer’s with him and truthfully, I’ve not really had what I felt was the right way to explain it and I’ve not always been sure how I would answer any questions he might have.  I always thought I would be brief and only answer the question or questions he asked.  I’m not sure what prompted him speak up this night, but I suppose I am relieved to have this more out in the open.  How would you tell your son that his mom isn’t going to get better?  I just told him  “No, she won’t get better.  Right now there isn’t a cure or a way to make her better”.  I told him that because there is no cure, I am committed to help raise money to find one.  I’ll write more about the Branchburg Race Against Alzheimer’s soon, and Ryan is aware about the 5k fundraiser we are having in June in Marcia’s honor. 

On Wednesday, on our way to have an x-ray on his foot (no fracture), he told me he never realized how important communication was until “mom started having trouble speaking”.  This felt like such a mature thing for a 12 year old to say, and a revelation I didn’t have until much later in life.  Neither exchange with Ryan seemed to upset him and if nothing else, it seems he was just ready to talk about this ordeal.  I think I need to spend more time in the car driving Ryan to doctors’ appointments…..

It was just a matter of time before Ryan engaged more with me around Marcia’s condition.  Communicating with her is just harder than ever and it can be exhausting.    Marcia still ties very hard to get her message across, but she is relying more on hand gestures and pointing and less on verbal cues.

This week I also took Marcia to the doctor to see if they could figure out the cause of the pain she’s had in her right leg over the last few weeks.   One of my concerns about Marcia’s progressive speech deterioration has been if she would be able to explain pain or discomfort.  She couldn’t clearly explain to the doctor where her pain was, how often it bothers her or how long she’s had pain.  In fact, she pointed to parts of her leg that were different than what she has been showing me when the doctor asked her where she was feeling pain.  Marcia could not follow or understand the doctor’s request to resist pressure or move her leg in various ways.  The doctor was very kind and patient, but we weren’t able to give her a lot of information that would be helpful to her in finding a cause or making a diagnosis.  We are going to get two MRI’s (lower back and right leg), which hopefully can give us information that Marcia cannot.

2 comments:

  1. Not sure how to change this from anonymous. My name is Kathy Martin and we are from southeastern Il. I think it is best to be honest with your kids. This illness will just keep getting worse and its best to prepare them as much as you can. Kids can try to shield us from their feelings just as we do for them.The other day, I told my son that maybe we should not be so upset that this happened to our family but that we should feel blessed that God chose us to help his dad through this journey because he knew we could do it. I don't want to make it sound easy. I cry a lot of tears and get mad at myself for getting frustrated.
    I would also like to say that for me who googled Early Onset Alzheimer's and found your blog,I already know that you go through far more than you write. That's ok .A blog may make it easier for friends and family to know Marcia's progress and to know about those priceless good moments she will have.It is depressing but saying it is excepting it.It is a grieving process for all involved. It is hard and scary. Alzheimer's is a long road that I'm finding that not all can follow.We are in a small town so we pretty well live our blog. My vote-keep blogging.Hope you got good news on MRI. Blessings!

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    1. Hi Kathy

      Thanks for writing, and I'm sorry your family is going through this too. I wish i could write more often, as it feels good to write from time to time. Just don't have enough time to do it as often as I'd like.

      Hope you are well.

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