Cognitively, there are many changes and advancements happening lately. Some listening/speaking/comprehending functions have simply left Vanessa. Sarcasm is now undetected by her, and merely is confusing. Teasing or joking comments, or subtle humor, she reads as serious comments, so we try to avoid that now. Direct and simple sentences seem to work best in communicating with her. It really fluctuates, too – something she might follow with no problem one moment might be really confusing the next, and then vice versa the following day. She can’t find the right word a lot, or uses one that is close enough to follow, but not quite right. (“I am looking for my winter hands,” saying “hands” instead of “gloves.”)
We do still have nice conversations, and she is definitely interested in hearing about our days, our families and our daily lives, and hanging out with us all. Vaness is able to communicate her needs and wishes to us for the most part, although her short term memory loss is increasing at a noticeable pace – she frequently forgets things within minutes. She is almost always confused on what day or time of day it is.
V now says things more simply, and laughs at things kids generally find funny. She will un-self-consciously make goofy faces to absolutely any baby she sees (including my Leo, who adores her). She stands in her house’s doorway and waves to the kids walking down her street on their way home from school. Vanessa’s sense of style has changed – she now alternates between walking out the door in too tight sweatpants with an old holey sweatshirt (a sort of outfit she wouldn’t have been caught dead in in public, before!), or choosing an outfit that head-to-toe matches in color from sparkling huge necklace down to her thick colorful socks and open toed flats (in a style a bit more matchy-matchy and matronly than Vanessa 1.0).
If you are Vanessa’s friend on facebook, you may have noticed this next one – as nuanced and sophisticated thinking and speaking begin to exit, she is a lot more literal these days, which is best evidenced by her posted photo’s captions! Sometimes she is being her creative self and aiming for funny, but a lot of times she is truly just describing very specifically what she is seeing in the photo, or whatever thought pops into her head as she looks at that picture. Here are some examples of captions she wrote herself, for pictures we took for Cancer Fighting Princess:
Adorable – and also revealing, right?
Something else we’ve noticed is that logic no longer always really resonates with Vanessa. You could tell her one or more simple, easy, clear reasons why __, but if that logic is in conflict with what she wants or thinks… the logic makes no sense to her. V listens (or not, sometimes :P) to what you say, then looks at your with this eyes-open and mouth-disgusted look, jabs her head forward, throws up her hands and just says “SO? So what?!!!!” over and over. It’s not really like she hears what we say and just doesn’t care (although, truthfully, she likely is being stubborn, too!), but more that she thinks (feels?) that whatever her brain seized upon is right and true and should therefore happen or be, and for us to say anything to the contrary makes no sense to her and is therefore really confusing and frustrating for her.
Behaviorally, these cognitive changes in Vanessa present some new challenges for us. Think 3-year-old not getting what they want, but as a grown up person with grown up strength and anger, and who is aware of and sensitive to being treated like a child… and you’ll have the right visual. These episodes could come as a desire to leave someplace that we/she can’t leave just yet, wanting to go somewhere when no one is able to take her, wanting to do something that we can’t really do, etc. As an example, if we’re in a store, she might be loading things into the cart that we/she really don’t need or make no sense to buy (such as water filters for a water pitcher she doesn’t own) – and if we mention that or try to explain, or put the item back, we’re likely looking at a tantrum of sorts.
This is enhanced by her loss of independence – often times (like anyone), when she feels mad like this, she just wants to walk or drive away/to the store/wherever and go and be alone, and she can’t. Talk about frustrating.
Of course, we don’t just walk around throwing logic at her nonstop! Many times we are able to accommodate what she wants in some moment no matter how illogical (let her make huge holes in a wall when she doesn’t like our smaller hole picture hanging suggestion, just plan to return an item later, chalk up a few (or few hundred!) dollars here and there towards some questionable purchases, make many trips as a whim strikes her, leave places early/late/whatever) and thus prevent the flare up or her negative feelings and emotions. But also, of course, there are other times when we just have to draw a line (for money or being reasonable or for our own sanity reasons) and can’t indulge her in whatever, and that’s when the anger episodes come.
Unfortunately Billy bears the brunt of these moments, as who V sees as the primary “enforcer” (for example, the times she has been mad at him for not “letting” her drive, although it’s hardly his “fault”!), but Mom and Christina and I have certainly seen this rage in action too. We’re all learning how to redirect (only sometimes works for V), distract (only sometimes works for V) and stay calm (only sometimes works for us!), but in all situations our main goal is to keep her and us safe while we get through it. Crazily, often times after some horrible screaming or stomping or upset episode, Vanessa might retreat to another room, and then emerge from it a few minutes later and have no memory of the incident, asking some totally calm question like “So, Jess, what do you want to eat for lunch today? :)”…!
With the poor-sleep issue I mentioned last post – we’re really hoping that V getting some better sleep might help with preventing the grumpies, too. Being the parent of some young kids/toddlers right now, many of these behaviors, and techniques for dealing with them, sure feel familiar to me! (Add to this Billy being fairly sleep-deprived these days as well – he’s practically “living the lifestyle” of a brand new parent!!)
However, these angst-filled moments, while stressful and difficult and awkward and frustrating and sometimes scary, are certainly not every moment. The majority of the time, we are with sweet and calm Vanessa who is happily and intensely working on her random tasks, enjoying lunch out, etc. She is generally loving and kind, telling us all the time she loves us and enjoying spending time together with us. A few days ago we shared a nice giggle at my insanely-growling stomach; we work on projects side by side (see tomorrow’s post!); she listened to Harry Potter on CD with Mom; Billy and V visit friends and have dinner with family. She is able to participate in many ways with the world around her, but I would say that her world is shrinking daily. We don’t spend a lot of time in any deep places on conversation – life is quite surface-level now for her, for the most part.
This is part 3 of a series of update posts for November. (You can start here to read them in order.)
Tomorrow’s topic will be: Vanessa’s “projects”
We’ll add one post a day for the next few days until we’ve covered everything, so please stay with us through them all!
I do not, personally, know Vanessa but we have
talked many times about TheSCAR Project LA which I am producing.
What you are writing, describing, I have been through with
four of the twelve girlfriends I have lost to Breast Cancer.
Jessica, as painful, frustrating and difficult this must be for you, Billy etal., I can
only say, God bless you all. Your love for V is heartfelt. She is very blessed to have you
for a sister. I wish you courage and strength for what lies ahead.
Vanessa, you have touched my life in a way that makes me enjoy every day that I am given. Thank you sooooooooooo much.
Vanessa and her entire family are so very inspiring to me. I look forward to Jess’s blog posts and altenately laugh and cry through each of them. Thank you for sharing.
I continue to be so impressed as to how well the family seems to be handling all this. Although I will admit that I have not spoken to any of you personally and writing can be deceiving. I admire Vanessa’s philiposhy of living sincerely and her always thinking of other people. Considering her state of affairs, I don’t think that I would care about anyone else but myself. I really admire all of you and continue to pray for all of you.
I am so appreciative of these thoughtful insights into what life is like for Vanessa and her family these days. We all love V and I am truly treasuring this act of love you are doing for her. I hope it is as therapeutic for you to write as it is for me to read.
My heart goes out to ALL of you and is just absolutely breaking for the pain I know you are going through. Reading this post especially brings back SO many memories of my mom as her brain mets spread. We documented everything too and I know it’s hard, even just finding the time but not only do the people who love V who can’t see her get to know how she’s doing, but I promise you all will go back and read and re-read these. It is quite interesting tho to see sooooo many similarities in what V is experiencing and what my mom went through. Please know that I am praying everyday for not only V but for you all too as I know, unfortunately first-hand what struggled you’re going thru. Especially to billy, I pray he stays strong and keeps in mind that its not V being so harsh with him, it’s that BI*CH we call cancer! my mom was the same way with my dad. She always wanted him there with her but literally did nothing but be mean (especially in the last few weeks) to my sleep-deprived emotionally wrecked father. Stay strong and pray–that’s my advice for right now :) GOD BLESS!!