Monday, February 8, 2010

A looong Day

Dear Lois,
Today was an extremely long day. I picked Kensi up (she stayed with her cousin Roni last night) and headed back up to the Hospice center. We spent a little over seven hours their before I had to evict Kensington from the room. The nurses here have all fallen in love with her. We’ve set up a little play area in Mazha’s room, in the corner, with you laid out to keep her little tushie warm. Our routine has been to spend about 40 minutes in the room, and then wander the center for about 20 minutes. This place is amazing (minus the patients on their deathbeds). We’re in one of the patient wings where right next door is a small ‘family kitchen’. Down the hallway, they have a playroom for kids, movie theater, soda shop, chapel, conference room, library, solarium, and a quite room. We’ve been to all of these, and this is only our first day here.

Kensi loves the quite room because they have a saltwater aquarium with colorful fish and a rocking chair. I’ve rearranged the room so she can be right up on the aquarium. She’s not the kind of child that taps or smacks the glass. She just sits, points at the fish as they swim by, and laughs a lot. Her second favorite place has been the chapel. I went in there earlier today to say a prayer. Our little angel is the most amazing thing ever… as we knelt down I asked her if she could hold papas hand and she did. She stayed silent until I was done, and when she realized that it was time to leave, she made a b-line to the organ. In a stern voice, I whispered, “no ma’m” and she stared at me at pointed to the keys. “No. That’s not a toy,” but she didn’t care. And to be honest with you, I was too exhausted to care as well. I sat her up on the organ bench and let her strike a few keys. More giggles and screeches came out of her.

Back in room, I could tell that Kensington needed a nap, so I placed her up on Mazha’s bed. Mazha reached out her hand to her and tried to tickle her. Kensi took this as a sign that it was time to play, so she proceeded to initiate a game of “peek-a-boo” with the sheet. After a couple moments of this, she started pulling on Mazha’s hand as if she wanted to be held. Unfortunately, she’s too weak to do this, so I laid her down on one of the dozen pillows on the bed. She tossed and turned a bit, but you can tell that Mazha was enjoying her little girl being so close to her. She kept mouthing, “Tell her I love her”. Kensi’s foot hit the control on the bed and made the top portion move. While this was uncomfortable for Mazha, Kensi thought it was the best thing in the world. She went to hit it again. I repositioned her away from the side rail, but Kensi wasn’t having it. She wanted to play with the controls. Okay… off to the soda shop it is!

The soda shop is set-up with the staples anyone would need during their stay here; sugar, sugar, more sugar, and some food. You can get breakfast (eggs, biscuit, gravy, and bacon) for $2.50. Dinner will cost you $3. Snacks… well, that depends on what you’re craving. I decided that I would get an ice-cream float for Kensi to try. Back to the room, we laid out on you in front of the TV and I spooned strawberry ice-cream and coke to munchkin. You would have thought she was in heaven. She could not get enough of it… until she experienced her first brain-freeze. She screamed. Off to the not-so-quite room we go.

By the time we came back in the room, Fazha was back and I met Mazha’s new doctor, Dr. Ferguson. She looked Mazha over and stated that her rotation was for two-weeks and that if there was anything that we needed, to let her know. Mazha mouthed that she was having problems speaking. Ferguson stated that she’s been using up all of her energy and that she needed to ‘store’ it up for a couple days so she wouldn’t get so exhausted so quickly. What has been happening is that she gets some rest at night and through the early morning, and during the first couple hours she’s up, she talking a lot and wears herself down. Ferguson said that she’s also talking around the trach and that when she’s ready to go home, she’ll provide her a piece of equipment that will allow her to talk better. When she was done doing her eval, she headed out and I followed her to the hallway. I told her that there is no way that we could take her back home. Simone, the girls and dad have been giving her 24/7 care and it’s too much. It takes three people to flip her on her side, and though my sister is a nurse, she doesn’t have access to the medications that Mazha needs without an ongoing prescription. Dr. Ferguson said that she fully understood, and that she’s trying to give Mazha hope, and a reason to continue to fight, but clearly said that she will be here until she passes. She told me that she’d send Regina, the social worker, to speak to me once she was available.

About thirty minutes later, Regina showed up and asked to speak with me in the quite room. She said that while this center is a temporary place, they’d keep Mazha here as long as it’s needed. Their philosophy is to either help their patients pass peacefully, or to get them better to send them home. Knowing that we’re at the end stage, but not knowing how long that stage actually is, they will not release her if the family refuses to take her home because they can’t manage her care. Then Regina did what all social workers are charged to do… talked about the plans for the future, the families emotional state, and talked about the educational piece of Hospice and the stages of grieving. I sat there and listened, but I wasn’t paying attention. I zoned. She realized it and quickly changed the conversation to Kensi. I perked up. She said that I was now part of the 22 percent of the American population classified as the Sandwich Generation… meaning we’re dealing with parenting our own children and taking care of our parents at the same time. After some tears, we hugged it out and she walked me back to the room. Mazha asked what we were talking about and I told her we were discussing Medicare. Yes, I lied. I figured that if I’m going to hell, St. Peter has more volumes than the Encycloaedia Britannica on me and that this would not the reason for my eternal darkness.

Around 5:30, Kensington had enough of this place. I took her back to Simone’s and headed back to Hospice for a couple more hours. When I left, I grabbed you to take you home with me. To provide me more comfort. I know that in theory, you’re scrapped fabric but in reality, Lois, you help me. At the center, all I want to do is go through the motions can try to carry on… when deep inside, I just want to cry. I know that one day this experience will make sense, and I will learn from it. But for now, nothing is clear.

When I laid you out on the couch, the one that my mother had claimed for so many years, I noticed that you had strawberry ice-cream and macaroni and cheese stains from Kensington. I don’t have the heart to clean you… you’ll loose your smell. You’ll loose your touch. You just wouldn’t be the same.

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