VMI in action

I always take a picture of the child's pencil grip (avoiding the face) during the VMI or a handwriting task, and include it in my report for the IEP meeting. It's popular.

Tower of Bunnies in OT action

tower of bunnies in action

Tower of Bunnies by CVS found near Easter, great OT game

It only cost 3 dollars, and the game itself of stacking the bunnies in disc towers and then hooking them out is pretty hard and so I am not a fan of that, but seeing how high they can stack them, and/or having them balance the bunnies, etc, is fun. I think it’s worth it just for the bunnies to do sorting, counting, whatever. CVS has it.

augh

i have SO much to share but I get overwhelmed!

Today's quote of the day by a 3rd grade boy with autism: “That's Miss Karen, and she is not an alligator.”

Somebody comment telling me how much they live for my updates and how they'll die, simply die, if I don't do it. It's okay if you're lying. I just need the guilt trip.

🙂 and also mention i better rspond to my emails!!!

and also mention i better buy my tickets for conference. and um, do my part for the socia media presentation. cough my battery is at 6% gotta go sweet dreams

Grandma

This is what I posted on Facebook right after Grandma passed….

I have lots to eventually write about, but for now I just want to write about the last few days. Grandma was brought home from the skilled nursing facility on Saturday, for hospice care. They were estimating about 3 weeks to 3 months. They brought her back to the suite she has been living in for the last year, at Aunt Julie's house. It is a beautiful suite with lovely large windows and lots of light. They positioned her hospital bed by the window, so she could look out. We kept rosaries all around her, and there was a never-ending parade of friends and family. Her daughters Debbie and Julie were her main caretakers, attending to her around the clock. When she came home Saturday, she was still looking at people, talking a little bit, and drinking/eating a small amount. I remember carefully spoon-feeding her tiny spoonfuls of Oreo ice cream, she had about 1/2 a small scoop at best, and didn't want anymore. Pretty shocking as even a few days before she could easily down a large vanilla milkshake, which my dad was bringing her daily. 🙂

By Sunday, she wasn't really eating, and was becoming increasingly non-responsive. At one point it was time for her oral morphine but she latched her lips closed. We were trying around it when dad showed up with a milkshake. We dabbed a little on her lips with a straw, and she went to lick the milkshake off. We did this several more times with miniscule amounts, then snuck in the morphine at the same time. If you came up to her, she'd turn her head to look at you, and you could get possibly get a few words out of her, but not for more than a second or two at a time. She might say something like “Thank you” or “Hi darling” but that was the extent of it. It was as if the fog could lift just long enough to say that, and then she would retreat back again. She was clenching her fists, elbows, limbs etc, with really high tone. We put rolled up washcloths in her hands to keep her from clenching her nails into her fists. She was not using her hands at all or moving on her own more than an inch or so. She was getting morphine every 4 hours on the clock and frequently in pain, but we were working on managing it.

I got her to “laugh” three times that day, which I am proud of. The first time was when I teased that my cousin's fiancee actually wasn't as perfect as I thought. The second is when I pointed to something on the TV screen and made a sarcastic comment, and the third time was when I repeated a Carol Burnett TV show joke, “It's raining cats and dogs. I know because I just stepped in a poodle.” That was the last laugh I ever got from her.

The next few days kind of blend together. I didn't see her Monday, but I was there most of the day Tuesday and Wednesday. We spent a lot of time making sure she was comfortable, and she had so many visitors. She was becoming increasingly non-responsive, withdrawing from this world. Wednesday night she had some rough patches and we encouraged her to go be with Grandpa, but she wasn't ready for the end. We couldn't figure out what she was waiting for. It was clear it was time for her to pass. Everybody had said goodbye to her in some way, and we kept talking to her, telling her it was okay. We all spent a lot of time by her bedside, holding her hands, stroking her face, talking to her, singing to her, playing music for her, loving on her, comforting her. We all had our highs and lows, times where we could laugh and other times where we could only cry. It was such a gift to just sit with her. We all thought she would pass on Ash Wednesday, but we were wrong.

On Thursday, I came back to see her sleeping deeply. She never once woke up and her breathing was loud and labored with her tongue blocking air in the back of her throat. We continued her morphine and other comfort measures but she remained fully non-responsive. At one point we rolled her over to do some repositioning, and a tear pooled in her eye. I had more or less been okay, but this absolutely broke my heart. I had a huge crying melt-down for a while, but eventually calmed down. All of us were experiencing crying jags hitting us at random times.

All of the family that could make it was there that night, as we knew the end had to be near. Her kidneys had stopped functioning and she hadn't eaten or drank since Sunday.The house was filled with people, all hanging either in her suite or in the kitchen. We all rotated around, spending time by her side, in her room, and just hanging out with Grandma in spirit. She was unresponsive but who knows what she could hear. We were all having our moments of tears and sadness but we were also doing our best to have a festive atmosphere, because that's how the Dobyns family rolls and Grandma always loved a good party. We were all ready for her to go Home to God and Grandpa, to be out of pain. We just wanted to be with her, making sure she knew how INCREDIBLY much she was loved by so many.

I spent most of the night right by her side. Those of us next to her were gently teasing her, saying things like “If I am your favorite grandchild, keep your eyes closed”. Somehow I ended up pulling out a “fart for free” app on my iPhone, which Aunt Julie and I started playing with. We were working on saying things with a straight face while making utterly inappropriate farting noises. We got Grandma into the action, and we were all laughing. You can see in the video that Tricia posted (on my Facebook wall) that we were all being silly and festive. I know it may look disrespectful, but I promise to you with all my heart it was the kind of thing that would have Grandma laughing hysterically. She would have been loving it, and it was all done in love. We were all having so much fun, and it was such a party, and I think Grandma knew it was time, that we were all together and loving each other, and ready. Minerva, her acupuncturist, had recently appeared, and said she felt confident she was within hours of passing away, and that one reason she was perhaps still holding on is that nobody familiar to her had shown up to take her. Minerva talked to her, letting her know an angel would come for her, and that she could go with that angel and go to Heaven. Well, somehow everything worked out, maybe an angel or Grandpa came for her, and maybe she was content in hearing all the laughter and party centered all around her. Her breathing began to stop, as it does in apnea. The first time it happened, I was seized by fear. We had just been playing with the “fart” app and I didn't want to be like “Hahaha, fart, fart…hey everyone, she just died”. Because as much as she loved a fart joke, that would have definitely lead to years of therapy, at least on my part!!

Luckily, she took another breath. We spread the word that her breathing was beginning to stop. Everyone gathered around her. Her hands, her forehead, her legs, everything that could be held onto was. We talked to her. We told her what a good mother she was, a good grandmother, a good person, etc. We praised her. We loved her. We prayed. We stroked her. We encouraged her. Her breaths became increasingly spaced out. And as we all were around her, not a single dog barked, no phones rang. We were all in the moment. And she took her last breath. It was beautiful, it was peaceful, it was sweet, it was loving. It was such a gift she gave us, allowing to laugh with her, but then letting us surround her with peace and joy and love in her final minutes. What an amazing experience, holding her, sitting with her, knowing she has ushered so many lives into this world, and we were able to help usher her out.

paper

The lava/worm paper is spreading which is awesome. It really can make a difference. I'm proud to say we just got some new paper that is Star-Wars related that a friend made for me – very similar concept to worms/bees/lavas. But I am not sure about how that works from a copyright perspective……

Have lots to say and share and am just so behind on work and catching up – lots of late nights and early mornings writing reports. So still thinking fondly of my blog and wishing I had all the hours in the world to catch it up.

OT returns

I have 383 new mails I haven't opened. And 400+ to deal with that I have opened. On gmail alone. Let's not even consider my 1,000+ work mails to file. 🙂 I've been in a sad place with my grandmother passing away, but I'm starting to feel the sunlight again. Will hopefully be writing soon…

End

Grandma passed away tonight……will update shortly. Have not been at work this week.

grandma

grandma is in her last day or two. blog hiatus a little longer.

Grandma – grief from a patient side

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.