Every night as I sit down to write, I struggle with balancing my need to be honest and share the truth about our situation and my feelings against my knowledge that so many people will be reading my thoughts and that I will be reading these entries to my mother. I worry about dumping too much truth, especially when so many want to hear good and positive things. I also worry about reading my words to her and causing her pain or upset over the things I say. Normally, I would give nothing but complete truth and honesty to my mother, even if it hurts. It is so hard to do that now when she doesn’t need my thoughts and upset weighing her down. I also have a desire to protect Mom’s dignity, and the truth of the situation isn’t always pretty.
Today was one of those days…not exactly pretty. Micah woke up on the early side around 7:45 this morning, so I never did make it back to bed for a nap. I waited until nearly 8:20 to go into his room, and Micah was in LOUD mode. I kept trying to quiet him down, but he just wanted to yell “Mama! Dada? Baby? Sit down!” over and over again. I finally picked him up and tried to pull him onto the glider with me, but he decided he needed to be free, and he made a run for our bedroom yelling “Daddy!” The minute he got to our room, he grabbed Elliot’s glasses from the night stand and handed them to Elliot. He ran around to my side of the bed and tried to climb up (but was frustrated because I had moved the doggy stairs away recently). So I scooped him up, kissed his cute little belly, and plopped him onto the bed. Micah quickly began his ritual of covering himself with pillows while shouting “night night.” He then looked across the room, noticed Maya in her bassinet, and started screaming “Baby!” We tried to quiet him down, but to no avail. Naturally, Maya was awake within a few minutes of Micah’s appearance. I quickly grabbed the baby, unwrapped her swaddle, and crawled into bed with Micah and Elliot to nurse her.
After a while, it was getting too difficult to balance Micah’s rambunctious energy with a nursing baby, so Elliot got up and took him downstairs to start breakfast. Megan arrived promptly at 9, and Elliot came upstairs to ask if Micah had a Kidville class for the day. I carefully transferred the baby to the bed and ran downstairs to check our new class schedule, and realized that Micah had a 10:15 gym class. I helped Megan finish up breakfast and get Micah dressed and out the door by 10. I just realized that I never even asked Megan how Micah enjoyed class today.
While Megan had Micah at class, Elliot and I got ourselves dressed and ready and left with Maya for Hopkins. I had hoped to go visit a friend before leaving for the hospital, but I realized I did not have enough time because I needed to be home early from the hospital today so Megan could leave for her second job at 5. I brought my computer with me today…but never even managed to turn it on, let alone do any work.
We arrived at the hospital to find my mother in pain and uncomfortable again. It is so frustrating to watch my mother go through this and not be able to help! My mom’s regular nurse, Donna, was off today, so my mother was feeling a bit out of sorts and alone. She was waiting for her nurse to come in and help her out, so I stepped out to the nurse’s station to make sure the nurse was on her way. I also requested that the doctor come in to talk.
While we waited, I held my mother’s hand and stroked her hair. I brought “Delicious” in close for lots of hugs and kisses, and I talked my mother through relaxing and breathing to try and relieve some of her discomfort. We were there for over an hour before the doctor finally came in to see us. She was quite kind, and Elliot and I asked all kinds of questions about why my mother was still in this kind of pain after nearly a week. She explained that the scan last night showed that my mother still had an intestinal blockage…in short, really horrible constipation. She discussed what actions they were taking to relieve my mother’s discomfort, and then she told me that she hoped the new medications would help my mother.
After speaking to the doctor, my mother’s food tray arrived. She asked for Elliot to make her turkey rolls (he apparently rolled her turkey and spread the perfect amount of Russian dressing the other day, and she wanted him to do it again). She actually ate fairly well – she had about half of the turkey and the bread, a few of the green beans, some soup and some fruit.
My father arrived a little while later while my mother was still in pain. She was squeezing his hand, and we tried more kisses from Delicious, but nothing was working. Then, the physical therapist arrived, and we decided to use the time to work on transfers. Because my mother was so uncomfortable, Molli (the PT) decided to help us try a transfer to the commode and practice the technique. Elliot left the room with Maya, and my father and I stayed behind to help and learn.
The reality of the situation is that my mother needs a lot of help right now. She is a tiny little thing, but it is definitely a huge challenge for us to help her even do basic things like use the commode. The process is frustrating, uncomfortable and exhausting for my mother, and frankly, not exactly easy for us to handle either. I think we all hoped that my mother would regain the strength she had pre-surgery, but that just has not happened, and at this point, it is unlikely to happen.
After we finished the transfer to the commode and back, my mother was simply exhausted, but feeling much better. We decided to transfer her to the wheelchair and take her out to the courtyard for a brief visit outside while they changed my mother’s sheets. Unfortunately, my mother was just too exhausted to stay outside in the wheelchair for long, and within 20 minutes, she was insisting that she needed to go back to the room and get in bed. I think some of it was exhaustion, but I also think some of it is fear. I think she feels safest in bed right now, and it pains me to see my mother so fearful.
I think the realization of how much help my mother needs right now really struck me today. After our little visit in the courtyard, I definitely broke down. I called my brother to try and talk through some of my concerns, but I was also afraid to be too graphic with him. I’m worried that we will not be able to manage my mother at home with just a single home health aide. Our training session today really set me off on a tailspin, especially as I realized how much will likely fall on my plate. I am worried about how that must sound…it isn’t that I don’t want to be there, but I am worried about how I will physically manage it, and I am also worried about balancing the other things in my life. I need to be there for the children and my mother, but I also need to be able to get away and get out of the house sometimes, too, and if it takes 3 people just to help my mother use the commode, how can we make that work? It is one thing to do for weeks, but what if my mother actually has 6 months or a year or more left? Can we really manage and live this way?
I finally confronted my father this afternoon and told him that I really needed to talk about some realities and start some planning with him because I’m scared. He initially tried to brush me off, but I think the reality of today’s practice run had him thinking a bit, too. I brought up some really tough subjects…like quality of life for my mother, and treatment options, and whether we are making the right choices. We discussed support care, and we talked about options outside of the house, and how we can make things work in the house. We then went in to talk to my mother about some of our concerns, and what the options were for her. She was clear that she does want to try both radiation and chemo because they are her only chance at some additional time. She said she is worried, too, about managing things at home. We decided not to take the discussion any further right now, because we really need to see how my mother (and us) handle the next few weeks before we figure out what is next.
I still did not feel like we had resolved anything about how we will handle things. It has become clear from the doctors and the therapists that they are all recommending my mother be released from rehab sooner than later because she is not making enough progress. They have started training us, and my concern is that they will try and release her this week before she can even begin treatment. We are nowhere near ready for that to happen. I told my father we need to find out more information about hiring caretakers…we need to pick the company, or identify a person, and figure out how long it will take from the time we first contact them until we can have someone start working for us. I feel like we need to be prepared – ready to jump in and “pull the trigger” at any time as soon as we learn that mom is being released.
While my mother was napping, Jeremy arrived, and then one of the occupational therapists showed up to visit with Maya before doing therapy. Jeremy, my father, Elliot and I all sat down with her, and we expressed our concerns about managing at home. She gave some honest recommendations, and said they would work with us on trying to simplify some procedures and make some of the tasks (especially bathroom and bathing) more manageable. That helped, but I am still worried about what lies ahead.
Elliot and I had to run out the door in the middle of our discussion with the OT to try and race back in time for the babysitter. I hated leaving like that. Naturally, traffic was horrible and we were running late. I ended up calling my friend Laurie to see if she could get to our house before us so the babysitter could leave on time. She bent over backwards to make that happen, and managed to get there a little after 5. Thank you, Laurie, for racing around and putting yourself out for those 15 minutes – it really meant a lot to me, and I know it was a huge inconvenience. Elliot drove like a crazy person (I think he ran a few red lights and nearly got us killed a few times) and we made it home around 5:20 or so. I think on days when Megan needs to be at work, Elliot has to stay home because we just cannot seem to get back in time from the hospital, and I hate feeling pressured to leave when there are things happening at the hospital.
When I got home, I texted with Jeremy a bit. He said that he and my father had practiced a transfer to the wheelchair using a special transfer board, and then Jeremy acknowledged that Mom is a bit heavier to move than you’d think just from looking at her. I’m much less worried about the transfers to the bed, couch and wheelchair – Elliot can certainly help with all of that. I think my biggest fear is managing the personal care part of things, and right now, that is a challenge.
Once again, my cousin Francine sent over dinner for us…this time, Chinese food! Elliot and I had quite a feast (Francine managed to order all of my favorite items), and even Micah did some eating…and a little throwing. My mother called at 6:45 to say goodnight, and we had a little chat. She said she was feeling fine, and I was glad to hear it. My father came by on his way home from the hospital and ate dinner, too. He stayed for maybe an hour before he went home. Micah went to bed early and easily tonight, and then Maya actually fell asleep early, too, around 9:00 pm. We’ll see if she makes it all the way through until morning!
Around 9:45, my mom called again. She said she was actually trying to reach Dad, and thought she heard him at the hospital. I told her that he was not at the hospital, that he had just left my house and was probably at home. I offered to conference call him so she could talk to him, but she said no, she just thought she heard him and wanted to hold his hand because she was in pain again. I did my best to talk her through the cramps and relax, and I told her to call the nurse and ask for a few things that have helped. When we hung up, I called my father and suggested he call the nurse’s station and ask them to try her on the commode again to see if that helped. He called me back around 10:45 to say that the nurses took care of Mom as we requested and that she was feeling better again. I hope when I go in tomorrow that my mother tells me that she had a good night tonight. I’m finding it frustrating that the nurses tell me how wonderful she is doing and feeling, but my mother tells me a different story. It makes me wonder if they are checking on her enough. She was scared last night because her regular night nurse, Jeanette, was not assigned to her, and she had a new day nurse today, too.
Tonight I’ve been sad again…worried about what the future brings, but just sad that my mother has to deal with this, too. She keeps telling me how she feels like she has lost her dignity, and I can only imagine how hard that is for her. I want every second of time we can have together, but I also wonder if we are doing her any favors. I’m worried that the treatment will make things worse for her, and that her last few weeks will be spent in misery. Then I think about “what if” the treatment works and we have 6-9 months or more of time left…will my mom be in pain from all of these “side effects” like constipation the entire time? Is that quality of life for her? Obviously, I want my mom to live as long as possible, but I don’t want her to be in pain. And right now, she is miserable, and I am afraid to see her have to live that way.
Mom and I have had more serious discussions again…about her funeral, about the future, and about choices. My father has been trying to handle some of the “housekeeping” issues…like purchasing cemetery plots (Dad – did you notice how I spelled cemetery? C-E-M-E-T-E-R-Y And for those of you who do not know why that is funny, I’ve been torturing my father about spelling for probably 25 years or more, much to my mother’s amusement, and for the past few years, his inability to spell the word cemetery correctly has been the source of endless amusement for us). My father has also been trying to focus on pre-paying for funerals, too. It has been a rough thing for him to face this week, and even harder for him to sit down and discuss these topics with my mother. She has very specific wishes, and we are doing our best to make sure that when the time comes, we carry them out as she requests.
She also started talking today about life for my father after she dies. A hard subject for all of us to think about. Today she told me that she was going to talk to my father about re-marrying after she dies, so he doesn’t have to be alone. When he came by tonight for dinner, he told me that she raised the issue…and it sounds like he dealt with the discussion through humor. I hope he heard what my mother had to say, and I hope she feels like she was able to communicate what she needed to say to him. She has been frustrated with him lately because she wants to have some serious discussions, and my father prefers to turn everything into a joke (who doesn’t prefer laughter over tears, right?). I also hope my father does not have to spend his life alone…but the thought of him moving on at some point down the road is just too difficult for me to think about right now. Even the idea of making room for someone else in our lives when that person should be my mother…well, it hurts to consider. I hope that if and when that time comes along that I am strong enough to handle it, because right now, all I can think about is how our family will forever be broken without my mother.
You know what else I am missing today? My mother’s smell. Sounds strange, but for as long as I can remember, my mom has always had this lovely scent…slightly citric, slightly floral. It is a subtle scent, a mingling of her perfume, her shampoo, her deodorant, her hairspriay, her clothing detergent, and probably a dozen other things. It never smacks you between the eyes, but it is just this understated, light scent, almost an afterthought. Most people probably never even notice it, but after years of sitting close and sharing clothing and visiting often, the scent is a comfort to me.
What I love most about it is the way she left a trace behind after she spent a day snuggling with Micah or Nugget, or napping on my couch. I loved waking Micah up on Friday mornings after he spent the prior evening with Grammy, because I could smell my mother’s scent as I leaned in to nuzzle his cheek. Sometimes, I would notice it as I scooped up his dirty clothes for the laundry, and I would smile as I thought of her kissing his belly and tickling him. I love how the scent still sits on her pillows, even after the cleaning lady changes the bed. And I love how the scent gives me a hug when I borrow a shirt from her closet. Because that is exactly how I feel when I catch her lingering scent…like her presence is giving me a big warm hug. It always makes me smile to think that my mom stamped her presence in a room, or on my children, or in my home – to know that she has announced her presence in our lives in such a beautiful way. And today, I am missing it, because after a day at the hospital of snuggling and kisses…Maya came home without my mother’s scent stamped on her, and try as I might, I cannot catch it lingering on my shoulder from her hug and kiss goodbye.
So, here it is, 4:45 am, and I’m trying to wrap up this blog post. I still have to put away the milk I pumped (for those of you wondering how I blog and pump, the answer is simple – a hands-free pumping bra – BEST invention EVER for moms who pump). I’m not feeling tired at all…just a little wound up and my mind is racing. I think I will probably try and do a little work before going to bed. Micah has preschool again in the morning, and then we’ll be off to Hopkins for the day.