Despite all of my concerns, today went surprisingly well! Both children slept through the night, and Elliot managed to leave the house this morning without waking the children. Maya woke up first, I think around 7:30, and I brought her into bed to nurse and sleep. Micah woke up around 8:15, with a very insistent “MOMMY, MOMMY, MOMMY, MOMMY” shout that would not abate. I tried leaving Maya to sleep in bed and take care of Micah, but the minute I got him downstairs, Maya started crying. I ran back upstairs to get Maya…and Micah screamed at the bottom of the stairs until I returned. For a few moments, I had a bit of a panic…how could I possibly handle an entire day like this?
I put Maya down on the play mat for a few minutes, and Micah joined me in the kitchen. I poured him a sippy cup of milk, strapped him into his high chair, and gave him cereal and a banana for breakfast. While Micah ate, I quickly ran downstairs to the laundry room and grabbed a clean outfit for him, and another one for Maya. I came back upstairs to find Maya crying, so I transferred her to the swing.
I spent the next hour trying to keep both children calm and occupied, and much to my amazement, it worked! Maya fell asleep in the swing, and Micah ate his breakfast, let me dress him, and was busily playing with his toys. I was on the phone with my friend, Heather, around 9:30, trying to figure out how to get upstairs to get showered and dressed when there was a knock on the door…it was our babysitter, Christin! Apparently, Elliot had mentioned to her that I might need help today, and although we never called her to make arrangements, she decided to come over. I was relieved to see her.
Just as I thought I had things covered, it dawned on me that Micah had swim class at 11 – I had completely forgotten! I ran around gathering our stuff…I put myself in a swim outfit and packed a change of clothes and some showering supplies. I asked Christin to change Micah into his swim suit and to pack up the clothes he was wearing and put his diaper in the swim bag. After I sat and debated the best plan of action for a few minutes, I decided that Micah and I would go to swim class, and Christin would stay behind with Maya. I asked Christin to pack up a sandwich, some cheese, fruit, and some cereal for Micah while we were out so we could easily give Micah lunch and leave right when we came home.
On the way to class, I spoke to my father – he said he would be leaving shortly to go see Mom. Neither one of us had received any phone calls, and my father had checked in with the nurses to make sure she was doing well.
Swim class was fun – we worked on floating, blowing bubbles, using our arms, climbing out of the pool and kicking. Micah had fun and was participating the entire class! He gets a bit scared when he floats, but he seems to calm down quickly if I sing to him. He is never afraid to put his face in the water or put his head under, and he really seems to love swimming.
After class, we gathered our things and went to shower. I quickly rinsed myself off and focused on cleaning Micah. He is not thrilled with the idea of a shower, so keeping him under the water is challenging. He did a good job, and put up very little fuss. I managed to get his hair washed, his body cleaned, and I threw out his swim diaper. I wrapped us both up in towels, and moved over to the dressing room area. As I was getting Micah dressed…I realized that Christin had forgotten to put a diaper in the bag, and I had forgotten to double check before we left! As I sat there trying to figure out a plan, I realized I had only one option – put Micah’s pants on, sans diaper, and hope he didn’t pee in his pants before I got him diapered. Once we were both dressed, I ran out to the car thinking “please don’t pee, please don’t pee.” I checked in the car, hoping to find an extra diaper, and much to my amazement, we had one! I managed to get the diaper on Micah while he was standing in the parking lot, strapped him into the car seat, and we went home. We took a quick pit stop at home so Micah could eat some of his lunch and I could nurse the baby, but we were back on the road by 12:30. I was lucky that Christin showed up today – there is no way I could have managed getting Micah to swim class without a little help.
The car ride was uneventful…Maya screamed, but fell asleep for a while, and Micah got bored about 30 minutes in and started sticking his fingers down his throat to choke himself. I hate when he does that! Instead of yelling at him (which NEVER works), I tried singing songs with hand motions. Micah started doing the hand motions and singing with me! We sang Twinkle, Twinkle, Little Star, then we sang If You’re Happy and You Know It, Clap Your Hands, and then we finished our trip with The Wheels on The Bus. Micah was actually doing all the motions, and he was prompting me with which sounds/motions he wanted to do next. It was so cute…I knew he could do the motions, but I always thought he copied me – I had no idea he knew the words and could do the motions and sounds without following someone.
We arrived at Levindale around 1:30…just as Arleen and Lorin got there. They helped me load the children into the double stroller and walk them inside. Lorin wanted to do much of the entertaining himself…you see, he is a G.I.T…Grandpa in Training! He kept telling me how he needed practice for his soon-to-be grandson. We got upstairs to find a small crowd forming…Diane and Joey and my father were already there. Arleen and Lorin brought egg salad, rolls, and cucumbers for my mother to eat (yum!) and Lorin, of course, made my mother a smoothie.
My mother’s room is small, so we ended up transferring her to a wheelchair and bringing her down to the sitting area to entertain visitors. Gail and Steven also joined the crowd, and they brought my mother chicken salad from Panera. She was there for a little while before she had to attend physical therapy. While everyone kept Micah occupied, I joined my mother for her therapy.
I was a bit frustrated to learn that this therapist (who is not my mother’s primary therapist) thought my mom was paralyzed on her left side…and had not been bothering to work that side much. I had my mother demonstrate that she had significant use of the left side, and explained that she suffers from neglect (the brain forgets the left side) not paralysis. Another problem – apparently, they think my mother is unable to keep up with the exercise because she tends to close her eyes a lot. The minute they lay her down on any equipment, she closes her eyes. I think some of it is her vision, and some of it is comfort. I also noticed that the minute she closes her eyes, they ask her if she wants to rest, and she responds “sure.” I think my mother believes she is cooperating with whatever they want her to do, but they think she is quitting or too tired to go on with the therapy. Again, I explained to the therapist that she was agreeing with him, not in need of a rest. He worried about her and put her on a heart monitor – he thought she was faint or weak. Once he realized that she was fine, he pushed her a bit harder – she sat upright for over 10 minutes.
I told him that she had been walking at Hopkins with support – that the biggest challenge with walking was keeping her left leg from buckling, but that she had a lot more strength and needed help utilizing it. After speaking with him, I think they have not done such a great initial assessment of her capabilities, and now I’m even sorrier that I did not go up to Levindale in the mornings last week to meet with the therapists. I need to figure out how to switch shifts with my father so that I can be there to meet the therapists – someone from the family should have been there during the evaluations. I know that we will get to meet with them on Tuesday for a “care plan meeting,” but we will be almost 1 week into therapy at that point. As we have learned from our experience at Hopkins, our ability to get any more time extended in therapy depends on these evaluations, and right now they do not think my mother is capable and participating in therapy.
After my mom’s therapy session, we went back upstairs. My friend Heather joined us for a visit, and we had a nice time. My mother went back to her room briefly, and then they brought her back out to the sitting area. The therapist had asked me to keep her in the chair for another hour after therapy. From the moment she came back upstairs, however, she kept asking to go back to bed. I know she tires, but for the most part, my mother wants to go to bed because she is anxious and afraid – she has become fearful of being anywhere but in bed. That is perhaps our biggest challenge right now – she just cannot stay in bed all day. It is bad for her physically, and the more time she stays in bed…well, the more time she wants to stay in bed. After her surgery, she was able to be seated all day long, and was more interested in getting up and about. Now, she spends most of her day lying down – it is moving backwards. She says she wants to travel and do things when we get home, but if we cannot convince her to attempt a day out of bed, well, she will never be able to do any of the things she wants to do. I am worried that there are 2 more weeks left before we are even thinking of taking her home – and if she spends those next 2 weeks lying down, she will become weaker and weaker and become unable to leave her bed. She still has plenty of time left to live, and I’m starting to feel like she is sitting around in bed waiting to die instead of living during the time she has left.
I know that sounds like a harsh statement, but I’m frustrated. Every day, she asks me if I’ve brought her the things she wants in her coffin. Every day. Her latest obsessions are a picture of the family and the afghan from the family room. Today she asked me for the afghan about a dozen times, including several times when we had visitors present. When I ask her if she needs it because she is cold, she says “No, to take it with me.” Instead of being in the moment and interacting with friends, she was asking me to bring her things for her coffin. Aside from the fact that there will be no room for her in her coffin with all the things she wants to take with her, or that her family might want some of those things to keep here with us so we can think of her and hold her close, I don’t understand why she needs those things NOW. If it will bring her comfort, I’ll bring her those things from home, but this is not about comfort. Frankly, I don’t think that Levindale is the ideal place for her cherished personal belongings – things go missing, get ruined or soiled and lost very easily there, and I would rather save the afghan for her use when we bring her home. But, my mother keeps trying to pack her bag to die, and I am frustrated, because she is not dying yet.
There is a line from the movie The Shawshank Redemption that seems appropriate to me right now…Morgan Freeman’s character says it a number of times, but the critical moment is after he is released from jail and is contemplating suicide. He says there are two choices, to “get busy living, or get busy dying.” I think my mom needs to make a choice here, and it is time for her to get busy living. I’m not saying she doesn’t have things to decide, but we’ve done most of the big things already (like funeral planning). And now is the time for her to LIVE the rest of her life, not wait to die. How do you help someone live the life they have left?
By 3:45, my mother was unwilling to continue sitting in her chair – we made it 45 of the 60 minutes she was supposed to sit. She transferred back to bed and just sat there, not really talking, for the rest of the afternoon. Elliot showed up around 4:00, and we kept the children busy. By 5:30 or so, we were packing up to leave for home. Elliot took the kids and I went with Heather out to dinner. It was my first child-free dinner in…well, probably more than 3 months. We just grabbed a quick bite of Italian food for dinner, and I got home in time to nurse the baby and help put Micah to sleep. Both children cooperated, and we had a quiet house by 9:20 again.
Tomorrow, we have our appointment at the Wilmer Eye Institute – I am hoping that they can do more to improve my mother’s vision, and possibly offer up some therapies – even just mobility and orientation training (which would help her orient herself with her more limited scope of vision). I think tomorrow will be a long day for my mother between the early morning appointment and the radiation. I hope it goes smoothly – with so many hours away from Levindale, I’m concerned about them remembering to give us all of her medications and getting them administered as needed. Missing doses can really cause some issues for my mother.
Most of the week, they plan my mother’s therapy in the morning. We then head to Hopkins around 12:45, and my mom is usually back by 3:00. Visitors are welcome to stop by…I would guess that after 3:00 most days is really the best time to catch my mom at Levindale, but she does have some time in the mornings and lunch time.