Monday, February 22, 2010

Rest In Peace, Mazha

Dear Lois,

Joyce "Mazha" Dudek, 63, entered into eternal rest at 11:44 am on Monday, February 22, 2010.

Memorial services will be held on Friday, February 26 at 1pm at Jackson’s Burks-Walker-Tippit Funeral Home chapel in Tyler, Texas, with Father Tim Kelly officiating.

Born and raised in Ludlow, MA, Joyce moved to Tyler, TX with her family in 1977. She was an avid gardener, motorcycle enthusiast, and loving grandmother.

She was preceded in death by her father, Paul St.Onge of Ludlow, MA.

Joyce leaves behind her loving family including her husband Eugene; daughter, Simone and husband Randy of Tyler, Tx; son, Paul and husband Christopher of Bushkill, PA; mother, Lillian St.Onge of Wilbraham, MA; sisters, Carol Pollitt and husband William of Tyler, TX, Paulette Bergeron of Whitehouse, TX, and Lisa Tenczar and husband John of Chicopee, MA; granddaughters, Jordan Nicole, Roni Elizabeth and Kensington Grace; as well as many extended family members and friends.

Visitation will be on Thursday, February 25, from 5-7pm at the funeral home.

Potted flowers are welcomed or contributions may be sent to the ALS Association of North Texas at


Saturday, February 20, 2010

So help me God...

Dear Lois,

Nothing much changed for Mazha today. She slept for a majority of it. Since she’s been here, each day someone has gotten her sweet-tea to drink. In the beginning, we’d hand it to her and she’d drink it from a straw. Over the past two days, it’s been hard for her to build up enough energy to take a sip. The nurses have been giving Mazha her pain meds either through her feeding tube peg, or by syringe… so I asked a nurse for a couple syringes so I could shoot the tea down her throat. She seemed to like it. Actually, by the look on her face, you can tell she loved it.

I ended up changing my flight. Originally when I booked the flight – before I saw her, this was just a visit (hoping she’d get better and go home). I though I could spend two weeks down here, go home for a couple weeks, and head back down. My, how thing have changed. I was supposed to fly out this evening. Now, who knows when we will return back to PA / NJ.

On the way back from the bathroom this afternoon, I ran into one of the snack volunteers. Each day someone pushed a cart around with juices, candies, chips and muffins, all free for those visiting (or like us, setting up camp). I went top grab a juice for Kensi when I looked closely at her. I knew this woman… she was my fourth grade teacher, Mrs. Harrell. I haven’t seen her in over twenty years. To be honest, I thought she had passed some time ago. She lives down the street from my parents and I would see her a couple times a week taking an evening stroll. After twenty years of not seeing her, even though my trips back have been brief, I just assumed. She asked my if I had married ‘a local’, and not to get into how things have changed over the past twenty years (though she’d have to have known that back then I had the hugest crush on my friend Cody), I told her I married someone from the Dallas area.

Hey… it’s the truth, just not the whole truth.

Friday, February 19, 2010

Dear Lois,

“Where’s Miss Diva?”

This is the question we get from the nursing staff when they don’t see Kensington making the rounds in the morning. She knows every little nook and cranny of the facility. She been to every veranda and swing set, every gazebo and birdbath. Today she took organ lessons in both the chapel and the west patient wing.

She’s hid in the cabinets in the playroom and under the tables in the soda shop. She loves her daily wagon rides… that started just around the hallways until it started getting warm again, and now consist of ever memorial walkway and concrete path.

Little Miss Diva has also befriended the therapy dogs. Bailey, who is smaller than Kensi, broke protocol when he licked her. It wasn’t his fault though. No matter how many times we put a bib on her during feedings, she peels it off and food goes everywhere. Today she wore most of her snack – honey gram crackers. It was just calling his name so he helped clean her up a little.

Mazha’s fever is still over 100. They’ve continues to change her pain patch and check in on her every other hour. It’s gotten to the point where she knows we are in the room, but she’s not communicating that much. In the past, at night, she would smack her lips and the sound would get our attention. The smacking has stopped. She’s now only able to squeeze our hand and raise her eyebrows.

Last night Simone and Auntie Paulette called Memé, our grandmother, so she could talk via speakerphone to Mazha one last time. With the phone propped by Mazha’s ear, Memé was able to say some final words. She was happy to know that Mazha was alert enough to know that she was on the phone and knew what she was saying. It was an extremely touching and emotional moment… one that made Memé’s day. She told all of the nurses at the assisted living center, as well as all of the residents, about how fortunate she was to have that opportunity to speak with her daughter one last time.

   [sorry for the picture formatting. It was getting late and I couldn't stand dealing with it anymore!]   

Thursday, February 18, 2010

I love to shop... but this was too much!

Dear Lois,
This morning as I wrapped you around my legs and watched, in a daze, Kensington eat her breakfast Kashi, I realized that the end is closer than we had hoped. Mazha is starting to say things that are not making sense. Some of her forced-whisper statements could just be chalked up to confusion, “I don’t want a bath, I had one yesterday” (which she didn’t), to “I just dropped the cup” as she looked down at her hand that hasn’t been able to hold a cup in over a month followed.
I made a quick trip to the alteration place to pick up our suits and then Simone and I headed out to visit with a couple funeral homes.
The first place we stopped at was a place that Simone and I had both been to a couple times throughout the years. They were very accommodating with their packages… Since Mazha is going to be cremated (with a portion of her ashes spread in the ocean which she loved - except the fear that a shark may attack, which in Gulf of Mexico is a high probability - and a portion spread on her fathers grave) there wasn’t a need for a limousine to transport us to a gravesite. “Is there a way we could use that cost and roll it into a nicer urn, or more flowers?” “We could do that… or do either of you have kids in high school?” Do I look like I’m old enough to have a kid in high school? “Um… no. Why do you ask?” “Well, if you did, we could transfer the use of the limo to a prom or some other event. Anyone getting married soon?” Actually, yes. My niece is. “Marilyn, I do have to ask one question, and I hope this doesn’t seem rude… but please tell me the name of your funeral home isn’t plastered of the back window or along side the limo. Using it in a wedding would just seem, oh, I don’t know… a little tacky.” Thankfully, it wasn’t. So, it’s something to think about. We walked around and looked at the staterooms and the chapel. They all seemed okay, but Simone wasn’t happy with it. When we got in the car she asked me if I had looked at the ceiling of the chapel. “Paul, there was mold. Seriously, mold. How could you not see it?” “If we ask them to keep the lights down low, maybe no one could tell. We could ask the priest just to tell everyone to keep praying so their heads are constantly looking at the floor and not the ceiling.”
GRADE; Pricing = B, Package Choices = A+, Staff = A, Facilities = M (for mold)
The second place we went to was impressive. As we walked through the door, we were greeted with our own personal choir of angels, shipped directly from heaven. Roman columns adorned the hallways and the sitting area was stocked with soft clouds to sit upon. Their pamphlets were created with hand-made paper etched in gold-leaf lettering. Robert greeted us and brought us to the office. He started asking us some general questions about mom, and then we realized that he’s not asking for their general intake form. He’s filling out the death certificate. He starts asking for personal information for Mazha and we said that we didn’t have some of it with us. I grab my blackberry and text Chris to call me in a couple minutes. Robert wanted to know who the ‘informant’ - key contact – was going to be. I let Simone take the reins (thanks sis). She gives him her contact info and the then the phone rings. “Excuse me a second” and I step outside the door, but left it open. “Did you have me call you to get you out of a meeting?” “Yes. Oh. I see. Okay. Tell her to give us tem minutes and well be on our way.” I head back into the room, “Robert, I’m sorry to have to rush this, but the doctor is there with our mom and she wants to meet with the family, so we’re going to have to wrap this up. Can you please go over the packages and show us, quickly, the facility and we’ll get back to you at another time.” Will you be coming back today?” “Probably not. Maybe tomorrow.”
He brought us into one of the other rooms with the urns and showed us the packages. Well, the lack of packages. “Here is our price list. This is the starting fee, and then all of the different components are listed here on this page. While you can use a rental coffin for the viewing (which most people who are being cremated do, since there is an insert that the body lays in and everything else is just ornamental), you can buy one. Here’s that price list. We recommend that you buy one (and of course he did, for an additional $6,000), and we have a great selection to choose from. Now let me show you the rooms.” The staterooms were all gorgeous, as well was the chapel with stain glass windows. Simone whispered that while it would take some major convincing, this is where Jordan should get married. I agreed. As we headed outside Simone asked if someone really called me or if I made my phone ring. “No, someone really called me.” “Does the doctor really want to see us right now?”No, that guy was just to high pressured and he was getting on my nerves. You owe me for saving us back there! And by the way, you now have to tell him we’re not using him because he has your cell phone number.” I get a look, followed by, "You ass!"
GRADE; Pricing = C-, Package Choices = D, Staff = F, Facilities = A+
The third and final place that we went to today is next to Simones office. We where greeted by an older man and I told him we had an appointment with Ben. Ben was downstairs (hopefully not embalming someone) and would be with us shortly. I ran to the bathroom since the large sweet-tea that I had about an hour earlier had started to kick in. When I got out, Simone said that she was told this was a great day to be viewing the facility… since the pricing are going up after today. [Great! We’re going to get another hard sells pitch]. That right there put me in a defensive mood. We get in the urn room and Ben goes over the list, in detail. Okay? Where is the hidden cost? We start asking some questions… it’s all included. “Let me itemize it for you so you can see what’s built in.” He pulls out and does the math wrong [Ahah! I say to myself. Here comes the kicker… ] Oh. He’s off only by hundred dollars so he recalculates. Okay… the pricing is good, but how are the facilities? He shows us the staterooms. Nice. Very nice. Simone and I both comment on room number 3. We don’t get our personal angels playing the harp, but the area for the viewing is more than acceptable. We headed to the chapel, and with fingers crossed, I pray for no mold or asbestos. Nothing of the sort. Very nice chapel and it’s glassed in, so if Kensi starts getting loud, someone can take her out, but still see the services.
GRADE; Pricing = A+ Package Choices = A, Staff = B, Facilities = B+ (If we would have seen this place before the second place, it would have been an A, but come on… they had floating clouds and one of those drive-up window tubes that the banks have that shoot the soul directly to heaven.)
When we got back to hospital, Dr. Ferguson did want to speak to the family since this was her last day at this facility for a couple weeks as she was on rotation. She has such a convivial and calming voice. We knew what she was going to say, and would have preferred for the room to remain silent. She told us that she had such high hopes for Mazha when she first saw her two weeks ago, but the disease has rapidly progressed. She said it is most likely that Mazha would pass from an infection/pneumonia because of the way her body is functioning. Her fever isn’t going down and she has water in her lungs. While they’re going to try to dry it up, there isn’t much more that they could do. They would ensure that she wasn’t in pain and that she’s comfortable. Dr. Ferguson was fighting back her own tears. She told us that while she wasn’t going to be here at the facility, she was going to be in town and would only be a phone call away. While she’s only that phone call away, she has been as comforting to this family as you have been.


Wednesday, February 17, 2010

[tap, tap, tap] Is this thing on?

Dear Lois,

Today started off as sad day. Chris, Kensington and I arrived about 8:30 this morning. When we walked in the door, a new volunteer was stationed at the door. We were greeted with alarm. The questions of ‘who are you?’ and ‘where do you think you going?’ were barked in request. While I understand she was just doing her duties, I wanted to inform her that for the past 10 days no one has questioned our intentions and her role at the door was to be a greeter, not a member of the Hospice Gestapo [sorry, just had to get that off of my chest. Plus, I know I’m hypersensitive right now, so I apologize to you, Mrs. Volunteer] As we passed Mazha’s room, Chris asked me where I was headed. I told him that I wanted to check on something… as I got to the door a moment of sorrow hit me. Fredrick was no longer with us. He had passed away during the night. I haven’t seen many visitors in there with him. My fear is that he passed away alone like so many people here do.

Today Mazha had a couple good spells. She looked to be more alert and started kidding with Chris, saying that he was her favorite. She ‘played’ with Kensington for a bit, and clearly recognized everyone that was in the room. It actually made me question (and hope) whether or not Dr. Ferguson could be wrong. Until later we found out that she has started to go into renal failure. Her fever, which has been steadily at 99.3-99.6, has spiked to over 100.

Tonight was the first night that we actually used the family kitchen for what it was intended to be used for, instead of just our coffee depot. The entire group of us, minus Mazha of course, took control of the facility and started telling stories and jokes to help release some of our pain. You could hear us throughout the center. At first I thought we were irritating the nursing staff, but we found out that they actually enjoyed listening to us and they started laughing as well. They said they don’t hear much laughter in the hallways here, so our dinner conversation was actually uplifting for them.

[Papa and Kensi taking a nap with Lois]

Tuesday, February 16, 2010

Inbound Flight

Dear Lois,

Today was a good day for Mazha, compared to some of the other ones. She was a little more alert than normal and was trying to talk a little. She’s still in a lot of pain and the nurses have tried to alternate her medication a little (hopefully it will make her more aware during the day and sleep better at night).

Chris arrived tonight, though only by the grace of God. Due to weather patterns and airplane malfunctions, he had a couple canceled flights and spent the better part of his time in the airport trying to locate a flight that he could get on. He ended up taking a bus from one airport to Philadelphia, and then was able to get a flight to Dallas. The first thing he did when he finally walked in the door around 9:30 was wake-up chickpea to her the biggest bear hug ever.

Kensi calls it quits on trying to stay up to see daddy. She crawled to the pillow, rolled over, and crashed.


Monday, February 15, 2010

Empty Vessel

Dear Lois,

My bud Frederick in room 104 is still here, unfortunately the woman in 103 and the one in 107 didn’t make it through the night. It seems like the occupants on this wing are departing quickly. Which leads me into the conversation I had with Dr. Ferguson this morning.

After coming back in to check on Mazha after the weekend, she asked me if I could step outside of the room… so with Kensington in tow, we stepped into the hallway.

“I want to apologize if I gave you any false hopes last week when I said that I thought she had short months left. It was very hard for me to give an answer with only seeing your mother for two days… she is showing signs that she’s reaching her final days. I would be very surprised if she is still here in a week. Her lucidness is quickly fading. If there is anyone that would like to see her and spend time with her, it really should be done in the next three days… after that, she’s not going to know, or fully comprehend, them being here. I’m so sorry. If you would like, I could talk to your mom, and apologize. I just couldn’t tell how fast this disease was progressing without seeing her, and her patterns over a span of time. She has increased respiratory congestion and she’s starting to have fluid buildup in lungs, as well as a decrease in urine output. I want to reduce the amount of food we’re giving her, because her stomach is elongated, and I want to work on adjusting her pain meds. [holding back tears] I know this hurts. I know you’re trying to stay strong… but it’s okay to feel pain. Again. I am so sorry.”

It took everything in me to pick up the phone and relay the information to Chris. He’s now making arrangements to be here tomorrow. I called Simone and told her the same. Aunt Paulette arrived and I gave her the news… the hardest was telling dad. We all knew that this day would come, and prolonging it seems selfish, if not on our end, on Mazha’s. This isn’t the woman we know and love. While there are brief moments of her being alert and talking (which gives us hope that she will be here longer), the majority of the day she is an empty vessel plugged into a ventilator.


Saturday, February 13, 2010

Dear Lois,
Unplanned and completely unexplained, I drove through your hometown today. A town that I can’t recall ever being in. If I was ever there before, it certainly wasn’t in the last 15 years. (For those of you up north – or across the globe - this is what us Texans would call a ‘one horse town’, with less than two-square miles of a land, and six hundred or so people calling this place home). When I realized I was here, I had to pull over to the side of the road just to catch my bearings and wonder if there was a purpose for me being here. There was no reason for the GPS to bring me here. I was headed to Marc’s father’s funeral in Mabank, about 60 miles from Tyler… a town that I had been to (or at least through) several times in the last couple of years when heading to visit with friends. I checked the GPS unit, expanding the map to see where my ‘point a’ and ‘point b’ locations were. Looking at the overview, it should have never brought me to your home. It was out of the way by 20 miles. Right now with my faith distraught, I don’t know if I should look at this as a sign or a coincidence, or a signal that there is a spiritual presence in the afterlife, whether or not a higher power exist.

Whether a deity exists or not, it made me feel like I will have the opportunity to be in contact with Mazha again after she passes… or at least have those moments that make me remember her and think of the good times that we’ve shared.

While headed to the funeral, I needed to stop to use the restroom. I ended up finding a mini mart type gas station and went inside. To get to the bathrooms, you had to go behind the counter (with the cash register), through a doorway, down a small hall and in the back of the storage area. As I headed out, I heard someone screaming, “Help me… Lord, Help me!” Holy crap, the place is being robbed. I run back into the bathroom and lock the door. Just my luck - I left my phone in the truck, along with my wallet. I didn’t want to bring either of these into the funeral home because the wallet makes my butt look big in slacks and the phone I was afraid would ring in the middle of the service. What do I do?!?! With my ear placed against the dingy door, I heard, “I can’t believe it. Oh Jesus, thank you!” Ummm… normally when someone is getting robbed, you don’t hear him or her say thank you. I unlock the door and creep out slowing, still willing to run back into the small bathroom and hide in the cabinet under the sink. It ended up one of the customers won a hundred dollar scratch off ticket. Yes, only a hundred dollars. I risked almost pissing myself (and possibly worse) on a hundred dollar scratch-off. I would understand if it was the Power Ball or something. Maybe even getting excited over a grand, but 100? Hey… it makes a great story, right?

When I came back I picked up munchkin from Simones and headed back up to Hospice. We visited for a couple hours and then I went back to the house where I hand washed you… or at least the pieces we’ve dirtied.

Anyway, today Lois, you’ve made me think. Think long and hard about the road ahead. It’s not going to be an easy one, I know. But I’m starting to brace myself.

Friday, February 12, 2010

Every breath I take...

Dear Lois,
Sleeping at home, or trying to sleep at home, was the best decision. I would have made it miserable for Mazha if I were there with her. Because of my throat, I didn’t get any sleep last night. That’s not being dramatic (what’s to follow is).

Because of the ‘snowstorm’, the TV kept going out every 90 seconds. I decided by 9:30 that I would just call it a night and try to catch up on my sleep. I quickly realized that it was going to be an extremely long night, and catching up on any rest wasn’t going to be done. My throat closed up… well, there was a small gap for air to come through, but that was about it. I couldn’t swallow. [If needed, you can skip this part… it’s kind of gross] It seemed like every time I was about to drift into sweet bliss, the salvia would build up and I would have to swallow. It would cause so much pain it would take another 10-15 minutes to get me to that resting place again. And then the same thing would occur. I started to have night sweats, so I would kick you off me… but would get the chills so I’d reach for you on the floor and cover up again. I got up and went to the kitchen to grab a cup. I thought if I could spit instead of try to swallow, I wouldn’t be in the same amount of pain. No luck. I was getting tired to reaching to the nightstand so I placed the cup in between two pillows on the bed. Every time I would reach for the cup, I would hit the headboard (which would hit the wall), and it would wake Kensington up. I would go to comfort her, which would only be about 30 seconds, and then start that process all over.

Around 2 am I decided that if I got a towel and placed it on the pillow and positioned my head just right, I could drool the salvia out. That only made my lips tickle. I tried this for about an hour or so, and then I contemplated on whether or not I should take a sleeping pill. The fear rushed in me. “I’m going to fall asleep and die by choking on my own slobber.” I decided not to take a pill. I folded you up and placed you on the nightstand and tried to sleep where my head was on you, my body was laying diagonal across the bed, and my mouth was positioned over the floor. This lasted all of two minutes before I gave up. Stupid idea. I then tried sitting up in the bed. I placed three pillows against the headboard and thought if I was positioned just right, my drool would go directly down my throat and there wouldn’t be a need for any muscle involvement. Because of being over exhausted, my mind started playing games. What if this wasn’t a viral infection? What if this was a symptom of ALS? I mean, Mazha is going through the same pain right now that I am. There are three types of the disease, one of them being called ‘familial’ (inherited). Simone and I have discussed getting tested, but we have to find out if Mazha’s genes have a SOD1 defect. If it does, then we should get tested to see of we have the same defect. If it is defected, it could lead to a 5-10% chance of being dx with ALS. Familial ALS is a small percentage of the ALS cases.

I decided to get up and go into the living room next to the hospital bed to see if I could find the suction that MDA gave us so I could use it. Then I realized I had no clue how to use the suction or what I would need to plug it into. I know the one in the hospital is connected to her vent… there is a portable vent here as well, but that would wake up Kensi if I turned it on – in the living room or the bedroom. So I decided it was back to drawing board… well, more like back to spitting in a cup. I did this until 6:30 when Fazha called and said there wasn’t a need to come to the hospital as early as I had planned. “What… why? Did something happen?” He told me to look out the window. Snow. A lot of it. Well, a lot of it for the state of Texas. “Good. I’ll try to be up there by 9:30 – 10”. Kensington got up so I feed her and wheeled her playpen into the living room. I went to turn on ‘Yo Gabba Gabba’ and the TV was still out. All of her toys were either at Hospice or at Simones. Looks like we were both SOL. No Tv. No Toys. No papa willing to hold her constantly. She decided to cry. As did I. [this is where I failed at parenthood] I went back into the bedroom and with one pillow under my head, placed two pillows over my head to drown out her whaling and went to sleep. Yes. I actually was able to go to sleep for a whole 2 hours. When I woke up, Kensington was asleep, so I got dressed and went outside to clean off the car.

When I arrived at Hospice, Fazha was waiting outside to help me with Kensi, the diaper bag, duffle bag, and you. Fazha said that she just work up and had a burst of energy. Her color came back, her eyes were wide open and she was talking up a storm – in a way that he could actually understand her instead of trying to read her lips and try to make out what she was trying to say. I thought this was great news… but when I got into the room, her eyes were rolled in the back of her head, her color was gone, and she was out for the majority of the day. When she did wake up, it took all three of us (Fazha, Paulette and myself) to try to make out what she was saying.

Fazha refused to go home, so I wrapped Mazha’s legs with you before I left and headed back to the house. Chris has been missing his little girl so much that I finally installed Skype so they could talk before it was time for Kensi to go to bed. I'm sure over the next couple of days, we'll be doing this a lot :)

Thursday, February 11, 2010

Let it snow, let it snow, let it snow...

Dear Lois,

Mazha was sedated all day. I think it’s the patch that they placed on her. From 9am-7:30pm, she was probably up only about 2 hours total.

After arriving at Hospice this morning with Kensington, I quickly realized that I needed to get some medical assistance for myself. Throughout the night, I found it not only difficult to swallow, but to breathe as well. I left munchkin with Fazha and headed to the emergency clinic to go get checked out. They ran a Streptococcal pharyngitis (Strep throat) test and it came up negative. The doctor said it’s just a viral infection. I’m hoping Kensington doesn’t get sick. She has a habit for ‘sharing’ her pacifier with her daddy and me. She’s not really a paci-child. During the night she’ll use it and when we travel in the car (or plane), we give her one. [Funny Story - At her first day in Toddler One, I didn’t take the pacifier out of her mouth when I brought her into the daycare. When I put her down in the room, all of the kids came running to her. Surrounded by OPM (other peoples munchkins), she took her pacifier out of her mouth and went to hand it to Peyton. “Chickpea don’t do that. Cooties.” Then I realized what I just said. I just told all of these kids that Peyton had Cooties. I tried to back-peddle. “Don’t share YOUR cooties” Great. Now I just told all of the kids that SHE has cooties. Thank God they’re too young to fully comprehend what I was saying.] Anyway, the doc said there wasn’t much he could do for the pain in my throat. He prescribed a Z pack for me, but told me to wait 48 hours before I take it. He’s reasons are unknown, and my throat hurt too much to even ask him.

The gentleman in room 105 passed away today. He was the husband of one of the Anatomy&Physiology teachers at the local college. They brought him in the night before and he only lasted here a couple hours. It looks like God is working backwards. First room 106, now room 105. Mazha’s in room 102, so hopefully we will be getting several more days of her being around.

I had to go into town to buy a suit… the one thing I didn’t pack for this trip. When I was packing, something told me that if I didn’t prepare for a funeral, I wouldn’t have to attend one. Unfortunately, our friend Marc (from the Marc&Dean duo) lost his father yesterday to a silent heart attack. Chris called me early this morning to let me know. I know the services will be soon and since I’m down here, I feel like I must go. I don’t know how I’m going to do it, emotionally, I mean. We’ll see.

Before I left, I covered Mazha up with you. You spent the majority of the day on the floor, again. Kensi had another tea party with Fazha. More counting with her moo-moo cow, and tearing apart Legos. They don't get Nick Jr in the room, but we make due with the Cartoon Network in the background. It's better than The Beverely Hillbillies that Fazha keeps putting on. I think Auntie Paulette and I (Along with Mazha) have suffered countless hours to that show, along with Gun Smoke and Ponderossa.

Tonight it’s snowing here in Texas. We (they) don’t get that a lot down here. I headed back to Mazha and Fazha’s house to sleep here again. I was planning on staying at Hospice, but because of my throat, I think it’s best if I try to get some rest tonight.

Words that consume

Wordle: Mazha

Mazha is American Royalty

Dear Lois,

Not a lot happened today. Dr. Ferguson came in again to check on her. This is a once-a-day occurrence. Here it is just symptom management, so there isn’t a need for more than the nurses that are right outside the door. Because of the pain Mazha was in throughout the night, Ferguson wanted to put her on a pain-patch, something that releases the medication on a timer so she can be ahead of the pain, instead of playing catch-up and having to wait the 20-30 minutes for it to kick in.

Fazha has barely left her side. I made him go home last night to get a good nights rest. He’s constantly rubbing her legs, brushing her hair, massaging her hands, and every once-in-awhile pressing against one of her tubes… in which she mouths the word ‘asshole’ to get him to move. She says that he’s spoiling her. Earlier today, one of the nurses even commented on how good he’s treating her, I jest with a “Oh, it wasn’t always this way. Trust me!” Mazha chuckled… then choked. It’s a dry choke. No noise escapes her. Her eyes just tighten up and her lips tremble. You can just see the suffering running through her.

Around noon, there was a knock at the door. They were delivering a FedEx package from my cousin Debra. Her church group and her put a wonderful care-package together; lotions, wooly socks, inspirational quotes & books, along with numerous cards and words of encouragement. Also inside were two sachets of herbs, one lavender and the other eucalyptus. I laid the lavender one on her pillow and she was able to squeak out a smile. The scent filled the room and made it a more calming resting place.

Since my time here, I’ve been trying to joke around with Mazha. She’ll try to tell me where it hurts and I will say, “Yes, I know that Barack Obama is the best president we’ve ever had.” A grunt would follow. One of the nurses would come in and say to her, "Wow… you have lovely brown eyes" (and they’re looking better… on the first day they were bloodshot and glassed over). I followed up with, “Do you know you have American Royalty here? She’s Hillary Rodham-Clintons second cousin. You better be good to her or I’ll have this place shut down.” Mazha tries to flip me off, to no avail. When the doctor came in yesterday and Mazha asked how long she had, I told her that if she’d vote Democrat in 2012, the staff would do everything in their power to keep her alive. She shook her head no and mouthed, “Take me now.”

After Ferguson put her on the patch, she pretty much slept throughout the day. The Chaplain came in once when Auntie Paulette and the nurses where in (Mazha was having issues breathing and started to have a panic attack). He stayed for a couple minutes and said they he was here when we needed him. I don’t trust him though. Kensington was sleeping, in a pink outfit covered with a pink blanket, and he asked if I had a girl or a boy?!?! “A little girl”. “Oh, that’s nice. I raised three of them.” I guess he’s colorblind. That's always a good thing for a man of faith :)
We also had a visit from the pet therapy dogs. They were cute, but Mazha was out cold. We’ve learned to treasure our time when she’s not in pain.

Kensington and I made a fort out of you and one of the reclining chairs. She’s starting to take up more space in here than Mazha is. Toys spread out everywhere. Straws placed all around the floor (don't ask... she loves straws). Her little feeding chair that she now crawls to and puts the tray on it to let us know she’s hungry or wants a snack. For about thirty minutes, Kensi and Fazha had a tea party on you. With her Fisher-Price Laugh & Learn Say Please Tea Set, she’d pour the tea, stir the cup haphazardly, and pretend to drink it. She’d then try to stir Fazha’s tea as well. It was a great moment… I wish I would have caught it on film but the nurses have me petrified to leave any personal items out. On the first night, I left my wallet on the sink and was scorned by one of the nurses. “I’m not saying anyone here would take it, but I wouldn’t chance it. Lock all of your personal items up.” So my camera and wallet is at the bottom of a duffel bag that is hidden behind the cot. If they can get through the fort, over the table and chair and behind the cot without someone catching them, then the items are all theirs!

Mazha’s feeding tube keeps getting clogged. Whether it’s the food, the crushed pills, or the liquid medicine that is gelling with everything, the nurses kept coming in to try to clear it.

I ended up going home about 7:30-8pm. My throat is starting to kill me. Hope I didn’t catch something.

Lois, I found out a couple things about you today… you were a seamstress for 15 years. I wonder if you made this quilt. I assumed you did, and knowing that you had a passion for sewing, it makes sense. The amount of detail that when in to creating my comfort is superb. I took you home last night, once again. You’re a little tattered around a couple of the edges… I’m sure it’s because this masterpiece has wrapped you in love in your own time of need. You lived to be 77… had four daughters, eight grandchildren and 11 great-grandchildren. Oh, the things you can find out with today’s technology. Having such a large family, I can see why you’ve brought me my own sense of reassurance. I’m sure you had to be a strong matriarch with so many children grappling for your attention.

Well, Lois, tonight is another night. Thank you in advance for your touch. It’s like being held by a foster-grammy.

Wednesday, February 10, 2010

Unspoken Words

Dear Lois,

Last night another church here in East Texas was burned down. This makes the tenth church on the past month. On the way to get breakfast before I headed up to the Hospice center, I passed by one of the churches that was torched last week. It doesn’t make any sense. Right now, in this phase of my life, I’m mad at God. I’m mad at life. I’m mad at the horrible disease Amyotrophic Lateral Sclerosis and the fact that it takes its victims one piece at a time. I’m mad that Mazha will never see my little girl grow up and jealous that Simone had that opportunity. While I have this anger in me, I would never demolish the faith that others have. I wouldn’t take their feelings of peace and comfort away from them. Watching the news, I saw one of the local pastors recite 2 Corinthians. "We are hard pressed on every side, yet not crushed; we are perplexed, but not in despair; persecuted, but not forsaken; struck down, but not destroyed.” I envy him - for someone who has gone through such heartache to have so much optimism. For me… I am crushed. I am in despair. I feel abandoned and destroyed.

Walking up and down the halls of the center, it’s nothing but silence. You pass people and you glance at them, you may nod, but you don’t say anything. No 'hello.' No 'hi.' No 'how are you?' All cordial greetings. You know how they’re doing. The same as you are. You see them in the kitchen or the soda shop and again, a nod. You see them on a couch in the hallway. Exhausted. Worn out. Emotionally shattered. They look up and again, it’s a nod as you’re biting your lower lip. This says, “I know. I’m sorry.” When they see Kensington trotting down the hallway, they finally smile. An older couple stopped me in the playroom today and they wanted to hug her. Her mother was in here and she said she needed some brightness in her day before she left in so much pain. It tore me up inside.

Dr. Ferguson came in to check on Mazha. She moves her lips to talk, but we can only make out every other word, if we’re lucky. I’ve started to hold her hand and ask her to squeeze it when I get to the letter of the word she’s trying to say, and then I go through the alphabet. I finally figured out what she was asking.

“How long do I have?” Again, I feel crushed, in despair, abandoned and destroyed.

“Do you mean in here? Or do you mean in general?”


“Short months”

“Short months?”

“It could be a month. It could be two. It’s not going to be a year, or even six months. It will be short months. But that is going to depend on you. If you give up, it will be sooner. If you fight, it will be longer. But I will tell you what… I’ve only seen you for two days and you haven’t given me much to go on. Why don’t you ask me in two weeks and I can give you a better answer. You’re going to have good days and you’re going to have bad days. Don’t focus on the bad days. Don’t take things one day at a time. Focus on a five-day span. You mave have a bad day or two, but focus on trying to have a good day at the end of that time. Or focus on the good day that you just had. I have bad days… I sleep in late, I call in sick to work, I move slower than normal. I know it’s a bad day, but I don’t let ruin my entire outlook. I focus on what I’m going to do in the days ahead.”

She was then given some additional meds through her feeding tube to help with the pain. She quickly feel asleep. I later found out that Dr. Ferguson lost her grandfather to ALS, so she has taken a special interest to mom because of her diagnosis. “This is the fastest progression of the disease that I’ve ever seen or heard of. I hope I didn’t lie to her when I said short months… but she doesn’t look good." And she doesn’t.

In the early afternoon, I bring Kensington back to Simone’s house. I ran to McDonalds to grab dinner for Fazha and Me. When I entered through the front door, a young man, about my age, was sitting on the floor. I’ve seen him since Sunday. We’ve both wandered into the kitchen in the wee hours of the night in our PJ’s to get something to drink and in the early morning hours to get coffee. It seemed like we were on the same time schedule. Again, each time we’d just nod. It was the unspoken words that we all shared in common. He was on the phone holding back his tears. I overheard him say that ‘she passed twenty minutes ago’. As I turned the corner to go into Mazha’s room, I can see the entire family, and what looked to be the entire congregation of their church, standing in the hallway. One-by-one they were going into room 106 to say their goodbyes. She was finally at peace, with so many left behind in pain. It’s funny… one of the churches I passed on the way back here (we call it Church Boulevard because you have 15 churches in a two mile stretch, and a total of 200+ in town), had the following on their marquee. “Heaven: No Tears. No Pain. No Death” and yet, in one room tonight, all three were present.

I stayed the night on the cot, again, you kept reassuring me that everything would be okay. The sweet smell that was vacating you, comforted me. Mazha tossed and turned all night. She was in so much pain. Even though the wonderful nurses would come in every two hours, it seemed like every other hour I was standing at the nurse’s station asking for something else. Help moving her. Help adding pillows under her. More muscle relaxers. More pain meds. I didn’t, and haven’t, cared how I’ve looked. Tonight was my UVA shorts, slogan t-shirt and socks. Hair in a hot mess. Unshaven for the past week. They’ve seen it all before, I’m sure. Every time I would come out, they’ve gone to get another nurse or nursing assistant to read my shirt: Fiscally Republican, Socially Democrat, Sexually Liberal. One of them gave me a high-five. Something I wasn’t expecting, or desired, at 3am. I would have changed it, but the only other thing I had was covered in cheese ravioli from a little chickpea who wanted to share her lunch with me.

The room has been set to freezing, by Mazha’s request. Around 5am, she said her legs were cold, but she still wanted the fan on and the temperature at stay set at the level it was at. So I shared you with her. I wrapped you around her legs hoping you would give her the same compassion as you’ve given me.

Lois, who were you? How did you pass? Why did you choose me? Us? I don’t know these answers, yet, but I can only say thank you.

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.

Sweet Numbness

Dear Lois,

Kensington and I arrived in Dallas late Sunday night and headed straight to Hospice, where Mazha was admitted on Saturday morning. A lot has happened over the past couple of weeks. On Monday, January 25th, Mazha went into the hospital due to breathing problems, as well as problems eating. They told her that her only option was to go home, call 9-1-1, and come in through the emergency room. Otherwise, it would be hours before they would be able to help her. They brought her home and did that, even though transporting her in the vehicle caused so much pain. After being admitted, they ran numerous tests and early on Tuesday, they preformed a tracheotomy and inserted a feeding tube in her. She stayed in the hospital through the weekend and was breathing fine on the trach/vent and was taking the liquid food quite well via the feeding tube. We called the local Muscular Dystrophy Association and were able to secure a hospital bed, feeding tube pump, IV, and vent with bipap as well as several ‘meals’ that she could take through the tube. Once she got home, she started regaining her energy and finally started to fight the disease. When we’d call, I could hear her talking past the trach and she even talked about wanting to make a trip up north during the summer to see us. She had this type of strength for a couple days and then started having breathing problems on Thursday. They brought her back to the hospital, where they were told they could do no more for her. On Friday night, Dad and Simone got her admitted into Hospice as she's needing 24 hour care and it's something that they can't do on their own, and a home health aid is not going to be able to assist because she's on a breathing machine. In order for her to be able to be admitted, she needed to sign a DNR order… something that she said from the very beginning that she wouldn’t do. Once she fully understood that Hospice would be able to manage her pain, allow us to stay with her 24/7, and provide the care that only a doctor would be able to give her and that the DNR was only stating that if her heart stopped, they wouldn’t resuscitate her, did she decided to sign it.

Kensi and I decided to head down there now (originally, we were coming down at the end of the month to visit) for the next couple of weeks - to either be with her to help her get better or to make the final arrangements needed. Before we left, which was delayed because of the potential winter storm the east coast was going to get, I spoke to the nurse at Hospice just to get an update. They stopped feeding her since she arrived because she was vomiting, which was occurring the last two days she was at home. They had sedated her through the night and were waiting for her to wake up. The plan was to start feeing her again on Sunday and it will go two ways: 1) she take to the food and regain her strength and she will be back to the way she was prior to being admitted, or 2) she won't take to the food and this will be the end.

When we arrived Mazha’s room was filled with the Hospice staff, along with Simone, dad, Auntie Paulette, Jordan and her fiancé Chase. Mazha was up and semi-alert because of the medication that where injecting through the tube. I had braced myself for the trach, but didn’t realize the number of tubes that she would have coming out of her. She smiled the moment she heard Kensington. Looking around the room, you could see numerous pictures of Kensi taped to the walls so no matter which way she was looking, she could always see her. She took a moment to touch with Kensi’s feet and gruelingly wave towards her a couple times.

About a half an hour after we arrived, you could tell that the entire day spent traveling was taking a toll on Kensington. Simone and the girls decided to take her to their house so I could stay the night with Mazha. I tried to get Fazha to go home to get some rest, since no one had slept in days, but he refused to leave her side. He went outside to the linen closest and brought me a thin sheet and a thick sheet for the cot. He tried to convince me that the thick sheet was a blanket. I wasn’t buying it.

When we first entered the Hospice center, I noticed a door that was labeled “Clean Linens”, so I decided to try my luck to see if I could snag something, anything, which was going to help provide me some warmth. When I opened the door, there were numerous shelves with sterile whites; sheets, pillowcases, towels, and blankets. Off to the side, I noticed several quilts and afghans so I grabbed the thickest one… the one located on the very bottom of the pile. There you were. White and green with a starburst pattern. Throughout the night, in the cold, freezing room, you kept me warm. It was more than being wrapped in warmth… it was about being wrapped in love. You allowed my hand to burrow through so I could hold her hand all night. The sound of the breathing machine working going off every 8 seconds and the light of the full moon coming in the window barred me from getting any sleep. The nurses, coming in every two hours to relieve Mazha from her pain would creep in, turn the lights on and go to work. I would sit up and try to assist whenever I could, but through the night I felt helpless. All night she ached. More pain meds through the feeding tube. Around 5 am, they came in to flip her on her side to help relieve some soreness. At 5:45 they came in to clean the room (are you freak’n kidding me), and at 6 Marla came to visit before she headed to work. Dad stayed asleep, on his makeshift bed on a reclining chair and a visitor’s chair. Marla stayed about thirty minutes and when she left, I tried to get some sleep. You were there, on the cot, telling me everything was going to be okay. You didn’t smell like the sheet below me…that was hygienically clean. Bleach. You smelled like Japanese cherry blossoms. A fragrance that Mazha often smelled like. For the next three hours there was peace. I heard one of the nurses open the door, but she quickly shut it. I was able to shut my eyes and sleep. Forget my surroundings. Feel your embrace. I finally felt the ‘sweet numbness’ that I had heard about.

At 9:30 when another nurse came in, we realized that it was time to start the day. I had to go to Simone’s to pick up my little chickpea and return to Hospice so we could spend our time with Mazha. After I put the cot away, I went to fold you and that’s when I saw your name. In the corner of the quilt, “In Memory of Lois…” was penned. Well, Lois, thank you for the rest, thank you for your gentle embrace, thank you for your healing touch. I’m sure we’ll be in contact soon.