Grandma passed away tonight……will update shortly. Have not been at work this week.
grandma is in her last day or two. blog hiatus a little longer.
Grandma is officially on hospice, and was sent home to Aunt Julie's house, where she has her own little suite that they recently built for her. She has round the clock caregivers (not sure how that is being done financially/insurance wise etc, but yay). She got transferred via ambulance from the SNF (prounounced SNIFF, skilled nursing facility) earlier today. She has a hospital bed set up in the corner of the room towards the TV and window looking outside. She has a Hoyer lift to mechanically lift her/move her in the suite too. I last saw her last Sunday in the SNF, and while she didn't look too hot then, she has declined significantly even since then. Her eyes were open and she would occasionally track or focus on objects, but her face was slack into a permanent frown, and her eyes were mostly vacant. She could occasionally rouse enough to say a word or two, but for the most part, was completely silent.
When I first got there, I immediately noticed her left hand (which she had recently broken) was starting to clench, I think mostly due to her continuously having a protective reaction, not so much neurologically, but I got her a rolled up washcloth and put it in her left hand, which was the right thing to do as she wasn't using the hand at all and it stayed within her hand all evening. We're not worried about contractures or anything (her left arm is really stiff) because we don't think she will be around long enough for it to matter. Honestly, at this point, it could be hours to days. I think Grandma has already left the building, so to speak, for the most part, and her body needs to catch up to her mind's desire to move on. My true hope for her is that she passes soon and peacefully, before the pain catches up to her too much.
It was nice to see her occasionally rouse enough to speak a word or two, and when I told her I'd see her tomorrow, for example, she said “Thank you, darlin'”. There were a ton of family members at Aunt Julie's (that's what happens when you have such a huuuuge family), and many, many visitors to Grandma's bedside. She seemed to be more or less taking it all in. Right around dinner time the suite emptied out for people to get food, and it was just me, Aunt Julie, and Aunt Debbie. We put a rosary on her chest (I also tied one around her hospital bed railing), and put on a recording of the rosary. Grandma is very, very, very super super Catholic. It was so powerful, to listen to the repetitive chants of the rosary, and to hold grandma's hands and sit with her. It was such a beautiful and painful experience all at once. We sat there in silence, all holding onto her hands, watching her, absorbing the peace of the rosary. The tears were streaming down our faces. I struggled to not completely lose it as I wanted to enjoy the moment of love and peace with her. Her face stayed expressionless, but her eyes lingered on our faces. it was such a lovely, cherishing time we all spent together, in our own little world of love and grief intertwined.
It was interesting to watch all the different personalities at play while interacting with Grandma. Some family members had an instinctive ability to know how to act around her, while others were clearly uncomfortable. It's disconcerting to have your beloved family member not be able to respond to you. I wish people would understand that it's not about a give-and-take relationship at that point – it's not like you are throwing a ball and are then at a loss because it's not thrown back to you to volley again. At that point, it's about being in the moment and being present for that person in a spiritual sense – you can just “be”. There doesn't have to be an action. The simple act of holding a hand, or gently touching a cheek, or even just calmly sitting with them, is quite possibly more than enough. Hearing is often one of the last senses to go, so you can always just chat a little and tell them things. For example, I told Grandma about seeing a pig on the beach yesterday. I didn't need a response or acknowledgement.
From an occupational therapy standpoint, I felt a little helpless in the arena of physicality because that arena is really not my forte in terms of positioning, etc. I've had enough experience to have SOME understanding of what is helpful, but not enough to feel confident about physical issues. From an occupational therapy standpoint mentally, however, it has certainly been helpful to have been around a lot of sick people, as it has helped prepare me to not be uncomfortable or scared. Too bad it hasn't helped me with the being sad part…
I got to feed Grandma a tiny, tiny bit of ice cream tonight. She only tolerated small sips and probably had a total of a 1/3 small scoop total. So ironic that she has always LOVED sweets and ice cream and now that we would give her all she wants, she doesn't even want it, which is typical at end-stages.
I've always had a special relationship with my grandmother, and it's so incredibly hard to watch her slip away. While I'm not particularly religious (ok, not at all), I do take solace in the idea that soon she will be able to join Grandpa in heaven, and her suffering will end. We will grieve for her, but we will rest in peace knowing she is finally Home.
Dear OT Diary,
I am staying home on a Friday night to teach my cat how to type. I'm getting tired of his accuracy being less than 1%, especially when he is texting. I never understand if he is trying to tell me to “bring home milk” or “there is an alien under the bed”. Unfortunately, even after three solid hours of typing games, his accuracy is still only at 0.2%. I feel like such an OT loser. Maybe tomorrow we'll try Dragon dictation. After all, how hard can it be to dictate “meow meow meow” ?
I think I overwhelmed people with my rules. It's actually quite simple.
1. Print out in color.
2. BeeLine/Skyline: Bees attack if you go above the sky – NOTHING should ever be that high.
3. Middle/Lava line: “Baby letters” have to stay under the lava-line or they get burned. Only capital letters/tall babies can go through lava safely. (ie a is a baby, b is a tall baby)
4. Dirt/worms: Only tail letters like y, p, g, can go below the line. All other letters get attacked by worms if they go that low.
5. They can “save” their letters by erasing and fixing the mistake. 🙂
Have some new product ideas for OT fine motor games – would love to talk to someone who knows the next step!
I was in a Google+ video chat meeting tonight with Anita Hamilton, Cheryl Morris, and Christopher Alterio tonight (Army OT guy was absent – something about this thing called a Super bowl??? ;)) – we are presenting at the AOTA conference in Indiana in April, on the Saturday morning, about social media, so we are getting our ducks in a row….we hit quite a few different topics and it suddenly occurred to me that it was ANITA HAMILTON who had once called me out on not presenting myself as evidence-based! I went back and re-read the exchange that took place and I felt like doing a blast from the past, because she spoke again today of “learning out loud” and how it takes a brave person to do that.
I love the idea of “learning out loud” which is exactly what I have done with this blog, but I never would have thought of it that way, and I certainly wouldn't have thought of it as brave. If anything, I very much admire the more formal blog presentation that are much more succinct and professional, rather than my typical blabbery stream of consciousness with ten thousand ideas in one long never-ending paragraph. So in comparison I feel quite inferior. It meant a lot to me when she praised me for being brave! I do know I LOVE LOVE LOVE LOVE LOVE when I get e-mails from people telling me I helped them decide to go to OT school, or when I learn of new blogs that mention me inspiring their own blogs. Makes me feel like an OT bunny, multiplying….hahahaha.
I HAVE been SUPER SUPER SUPER bad about responding to e-mails/comments lately though. I did email AOTA and asked their social media dude about whether there was someone there who I could perhaps forward the questions to. It seems very Centennial Vision, and I get great questions from prospective students, but it sounds like they don't really have the resources to take on all those questions randomly. He recommended sending y'all to their monthly prospective student chat and checking out www.aota.org, and I think otconnections.aota.org is partially accessible as well. I have a new good idea though – they should pay for my AOTA membership and maybe that incentive will help me respond in a reasonable amount of time! HINTHINTSUBLIMINALHINTTHISISNTOBVIOUSATALLRIGHTIMVERYSUBTLEHINTSUBLIMINALHINT
All those e-mails I've gotten remain untouched in my email box until I have time to respond – as I always say, I ALWAYS respond, it just sometimes takes me up to a year… yeah not very chronologically helpful I know. :X I also need to update my blog sidebar again, so if anyone has some suggestions/additions/deletions that they want to offer, let me know…..
Gearing up for another week…..trying to decide my focus for this week….and need to email Tonya of TherapyFunZone.com about getting our newest handwriting paper up and running……the lava/worms/bees paper works nicely but I had some new ideas and I need Tonya's amazing Photoshop skills to make it work! I thought about making a version of Angry Birds paper (but calling it Angry Words) but I couldn't “make it fly”, excuse the pun….but seriously guys, turn handwriting into a game and see how much better the kids handwriting gets!
I am about to go make a green monster smoothie with my Vitamix….spinach, chia seeds, almond/coconut milk, banana, apple, orange…..that's probably it for this one. I'm trying to walk or do Pilates or work out pretty much every day plus eat MORE OR LESS close to a gluten-free vegan diet. Of course I've had quite a few missteps but overall doing pretty well. Trying to be kind to my body and soul as I struggle with personal life issues. And btw, I am happy to report that I was wrong, they decided NOT to place Grandma on hospice quite yet. She does have inoperable cancerous lesions throughout her abdomen so she is by no means in the clear but she is actually looking pretty good right now. Hoyer lift level though. 🙁 Wish that wasn't the case, but glad she can still joke around with us! She did a little shoulder shimmy for us today! As my friend Kim commented tonight, “You don't do a shimmy when you're in hospice.” We visited Grandma again today and it was lovely to see her laugh. I feel blessed to have an OT background and be comfortable in a SNF (skilled nursing facility) or hospital or wherever she is. 🙂 Actually I kind of lie, I THANK GOD I do not work in a hospital or SNF because it is so NOT my passion ….I feel the gifts I was born with are much more suited for pediatric work! Although I do love pediatric hospitals. Anyways. Tangent.
Oh one last tangent (is this a secant now? I'm a dork) is that I have been really interested in grief and its relationship with religion lately. Being in healthcare means I do see a lot of grief (although a lot of beauty as well) and now with the advent of blogs and caringbridge sites etc, there are a lot of “grief journals” out there so to speak. I'm fascinated with how people's grief evolves, especially in correlation with their religious faith – would make an interesting PhD dissertation. Wonder if I could make it correlate enough to OT to make it MY PhD dissertation one day! First I have to start hating my job though as I don't plan to start a PhD program until I'm unhappy, AHAHAHAHA. Just kidding. Kind of. No seriously, love my job, love that I get PAID to do something I love so much! I say that now, of course I won't say how much I love my job when it's 3am and I have a meeting with an advocate the next day, but hey, overall, LOVE LOVE LOVE! LOVE occupational therapy!! Rah rah rah, sis boom bah, I am clearly getting delirious, time to go drink my spinach!! And go to bed. Wow, 10pm, time flies when you're writing ridiculously, ridiculously long blog updates. CoughIwon'tmentionallmylaundryIstillneedtodocough.
A lot has been going on in my personal life lately and it's um, to put it mildly, SUCKED. Some of it's in the private personal realm that I won't share here, but the other part I can share, which makes me very sad, is that my grandmother was put on hospice. I hope to be able to use some of my OT tricks to help ease her time left! I am going to go see her Saturday or possibly Sunday. Grandma was my best friend when I was a little girl and I've always been close to her.
Going to work has been tough lately because I've been so sad about her + the other stuff, the teachers have noticed I'm really down. I had a total meltdown on Tuesday, but at recess time in my room so no kids saw me. The kids don't notice because I can be cheery to them, but in the between times I'm just so low/sad until it's time to put on my fake smiley face.
The last week or two I've focused a LOT on lefts/rights (writing it on their hands and mine, then having them lead me turn by turn) as we walk to OT, and then also a LOT on shoe tying, because the shoe tying can be used as an exercise of frustration tolerance, visual spatial skills, following directions, etc. Anybody have any really nice video tutorials or something they enjoy using? I'll have to put up what I am doing soon, it involves using two different colored laces plus some markings on the laces.
I can't remember if i already talked about all that, but it's easier to me to re-write it than to go look back (I write my blog posts in my email program). Today I used some of the things i learned in my primitive reflexes class on Saturday with some kids, and it was not too surprising to see how hard things were for them. For example, lying on their back with their feet in the air, and using their bodies to wiggle to another place using lateral and reciprocating movements. Hard to explain. I need another video. lol.
Using gum continues to be very popular with some of my kids for concentration, as well as theratubing on their chairs.
I'm also starting to do more handwriting of NUMBERS instead of letters. Numbers often get overlooked and there are lots of reversals there.
Plus as I mentioned before I am doing a lot more academic work with the kids, tips and tricks, for their math, science, etc. Also starting to teach kids to use a ruler and draw their own lines when none are given, for kids who struggle with handwriting if no boundaries are given.
I don't really have much else to say right now. Behind as always on OT life with blog comments and emails, am preparing for AOTA conference in Indiana in April as part of a social media presentation (come say hi to me!!!), and am trying to “be kind to myself” by eating healthier and working out with friends/co-workers, as I struggle to get through this trying time.
As always, I conclude this by saying I love OT, rah rah rah, OT is the bomb, yay OT, yay Centennial Vision, OT is an awesome profession, blah blah blah, OT rocks. 🙂 It is forever my passion!