Untethered

Every day, my mother has been asking me how she is going to live without our faces, especially the children. She seems to be thinking about death as banishment...being sent away from us, aware, alone, scared and far away, buried under ground. She worries about how she is going to live when she is buried...she is concerned about being cold, animals getting in, bringing pictures of the family, etc. Part of our discussion each day always includes a list of things she needs to "take with her." - Yesterday, she wanted to bring the ipod - wouldn't Steve Jobs be thrilled? Today's item was her cell phone (and her charger). She wants to be able to call us if she is scared or lonely.

I think what she means when she asks me how she is going to live without our faces is how can she possibly leave us? I keep telling her that she doesn't have to live without our faces, and I keep telling her not to go anywhere. Each time, I can only think "No, mom, the real question is how are we supposed to live without YOUR face in our lives?" Some days, like today, she talks as if death is already here, or that she has an upcoming expiration date. I keep trying to explain that there is more time, but sometimes, just sometimes, the thought creeps into my head that perhaps she knows something I do not. I hope it is just her fear of the future and what it will bring, and that we can work on assuaging that fear.

This morning, Maya woke up at 6:00 am...a rarity for her! The good news is, she slept through the night, so I'm guessing she is feeling some better. DH thinks she might have sneezed herself awake...I bet that would have been cute to watch! DH got himself up and out early today to attend a conference up near the hospital. My mom also called around 7:00 or so to tell me that she was miserable - I felt awful that I couldn't help her. Her nurse came in, so our conversation was brief.

Maya fell back asleep nursing, and I kept Micah in his crib until 8:15. At that point, he was getting really loud, so I decided to let the baby sleep and take him downstairs to give him his bottle and start breakfast. Once Micah realized that DH had already left for the day, he started to melt down again. The only thing that worked was to turn on Elmo for him.

Our babysitter arrived today, right at 9:00. She was able to take over with Micah, but he was definitely grumpy today. At 9:30, the baby woke up, so I brought her downstairs to nurse. The babysitter helped me juggle the children, get them dressed and fed, and gave me a break so that I could also hop in the shower. We left the house a few minutes before 11 so that I could drive Micah and and the babysitter to class for Micah. Unfortunately, dropping them off might not have been the best idea...Micah started to scream when she was putting him into the stroller. I am amazed that no one tried to stop her and accuse her of kidnapping with the fit he pitched!

As I drove up to the hospital, I received another call from my mother. She was again quite upset and told me that she was miserable both from the cold and the intestinal pain. She told me she just needed to talk, so I chatted with her a bit while I drove, and explained that I was already in the car and would be there with her before lunch. My mom seemed relieved to know that I was on my way, and she again hung up when her nurse arrived.

I arrived at the hospital a little before noon (and no, I had no issues driving today). I forgot to mention that they finally re-arranged her room a few days ago. They turned her bed 90 degrees and pushed it up against the side wall so she can now face the door. She says she doesn't notice the change, but I think she can see more of the room now and the people in it. Before, anyone who entered the room was in her blind spot, and it often made her nervous that people were coming and going and she could not see them.

When I first got to the hospital today, my mother was in her speech therapy session, but she was curled up on her side with her head buried in the pillows. She seemed very sleepy, but she was participating in her therapy. I stood quietly in the corner to avoid disrupting the session and nursed Maya. Just as she was finishing her therapy session, her lunch arrived.

I got Mom to sit up and eat her lunch, and she told me that SIL had been by to visit her this morning. She said they had a nice visit, and she mentioned that she likes having the morning company. I don't always remember to post when SIL stops by for a visit, but she has been great about stopping by in the mornings 1-2 times each week, and that means so much to my mom!

Some days, due to the steroids, my mother has a voracious appetite, and today was one of those days. When it kicks in, there is no slowing her down or convincing her to think things through so she can better use her left arm. Today she was very focused on eating her fruit and her ice cream, but because of the diabetes, we are supposed to make sure she eats the proteins first. My mother was never the most patient person, but what little patience she once had is now gone. She was grabbing at food and trying to eat and asking me about it before she was even sitting upright. I kept telling her we needed to sit her up and arrange the food, but all she kept asking about was her ice cream and fruit. She had hummus and pita, a shrimp tortilla wrap, fruit, and chocolate ice cream with chocolate sauce.

She seemed to enjoy her meal, but was having a bit of a struggle eating the chocolate ice cream. I tried to slow her down and get her to think about using her left hand to anchor the ice cream dish, but I could not even get her to put her spoon down for a second - she was hyper-focused on that ice cream! I think that they need to work with her on using her left arm during meals at a time when she isn't going crazy for the ice cream.

Right after lunch, my father arrived - he had taken a trip up to one of the rehab centers to check it out. He said it was nice and that he thought it would be a nice place. He was very...out of sorts...all day. He just seemed snappy and fidgety and upset, but I couldn't get him to tell me what he was thinking and feeling. He kept getting defensive and telling me to leave him alone and that he was fine. I wish it was easier to get him to talk about his feelings...he was clearly upset today, and did not seem to be able to express it.

The three of us waited a little while longer for Mom's transport to radiation. It finally arrived (late again) and we headed downstairs, where DH joined us. For once, they took her back immediately after we arrived, and then we had to wait another 30 minutes for transport to arrive and return her to the room.

We returned around 3:00, and my mother seemed pretty sleepy. She was a bit cranky this afternoon, and kept wanting us to put her "ears" in (that is how she asks for her ipod). At 3:45, the PT arrived to set her up in a better wheelchair and work on her strength. My mom went to PT and worked on pedaling (she is doing much better now) and standing. At 4:30, PT returned mom to her room, and all she wanted to do was nap. DH left during Mom's therapy session to try and get home for Micah and relieve the babysitter.

During my mom's physical therapy session, my brother called. Apparently, my niece is sick and had to be taken to the hospital. As if he hasn't spent enough time in the hospital lately. Add that to the list of bad karma, right? She is doing well, and it looks like she might have an infection, but she may need to stay there for a few days (and it may prevent my brother from coming to see Mom for a few days). So, in case you were wondering, so far this week, my sister-in-law (married to one of DH's brothers) had a stroke (I don't think I've mentioned that yet...she is doing well and is now in rehab) and now my niece is in the hospital - as my brother posted on his Facebook status, "the hits keep on rolling." I think I'm afraid to ask what else can go wrong, so perhaps I should ask instead "Why us?"

Mom was pretty flat today...not so interested in chit-chatting or interacting. She seemed annoyed during therapy sessions (but participated), and all she wanted to do was listen to her ipod. The good news is that over the course of the day, her cold seemed to improve. She was barely coughing or sniffling by the end of the day, so I hope it means that her cold will be gone tomorrow.

Around 5:00, my mom's visitors began to arrive. My mother ate dinner while they were visiting, but the entire time she kept asking me to turn on her ipod. I kept telling her that she should wait until everyone left to turn it on, but she kept getting annoyed at me.

They have repeatedly told us not to turn on too much stimulation at once for my mom...either the tv or conversation, only one conversation in the room at a time, ipod or visitors, etc. and we often forget that advice. Because it can increase her fatigue, I've been trying to control the over-stimulation while I'm in the room, especially when she is tired (not that anyone else cooperates). My Dad has a bad habit of talking to her while she is listening to me read her your posts, or dialing the phone and shoving it in her ear while she is trying to eat and have another conversation. Our guests often engage in side-conversations with me or my Dad, and my brother, DH and I are often guilty of that same mistake when we are there together. In the end tonight, I gave in and turned my mother's ipod on while her visitors were there. She seemed fairly uninterested in talking to anyone, and I wonder what was going through her head...exhaustion, too many thoughts, sadness? I hope she was just tired and wanting to sleep.

With all the other bad things happening and seeing my mother down a bit today, I've been thinking again. For all these months that my mom has been ill, I've been feeling quite lost. Untethered, really, as if I am being tossed about at sea without an anchor, just managing to keep my head afloat. But from May until August, the one thing that got me through was the belief that my mom would get better soon, and I'd have my anchor back. Since we got our diagnosis of GBM, the realization that my anchor is forever lost has been devastating, and each day it hits me like a breaking wave, trying to pull me under.

I never thought that I would have to give birth to Maya without my mother there to whisper words of encouragement and wipe my brow as she did when I gave birth to Micah. I never thought I'd have to hear her crying over the phone while I was in labor, apologizing that she just couldn't be there. I never thought that I'd spend my first week at home with two children without my mother there to help with the night shift, or take over a portion of the day shift so I could just nap. I never thought the one babysitter I would trust with my newborn child would be unavailable. I never thought that during such a rough adjustment period I would be spending all of my time running back and forth to the hospital worrying about her instead of selfishly having HER worrying about me and making my life easier. But most of all, I never thought this change was permanent.

When Micah was born, I was able to breastfeed him for 10 months because my mom came with me all over the country to work conferences to take care of him. I just assumed she would be there to do it all over again with Maya. I was able to go away to a work conference for 5 days when he was only 9 months old because she was able to watch him for me. And I never had a moment of worry, because I *knew* my mom would take care of him exactly as I would. I just always assumed that I'd have my mom to lean on for the next 20 years while I raised my children...and I always assumed that they would be up for the babysitting for at least another 10-15 years - heck, my grandparents were!

How am I supposed to go through life without my anchor? Even worse, how am I supposed to become an anchor for those around me? Some days, all I want to do is to curl up in bed with my mom at the hospital, have her stroke my hair, comfort me, and tell me this is all going to be okay. Because some days, it just doesn't feel okay. Today, it doesn't feel okay. Today, I miss my mom, even though I just spent the entire day with her. This is different than dealing with my grandmother's dementia...I missed her for years because she was gone before she died. My mother isn't lost, she is right here with us, personality and all...and yet, I still miss her. Or perhaps I just miss how she anchored me...is that something different?