She Just Let Go

I think it's about time I stop putting off this blog post.

For those of you who don't follow me on Twitter or Facebook, my mom passed away on Sunday.

We were all expecting it to happen. Honestly, I am so incredibly amazed and impressed with my mom for staying alive as long as she did. She fell into a very deep sleep on July 19th and never woke up. She went 10 days without any food or water. And as she requested, no feeding tubes or IV fluids either. I didn't know that was even humanly possible! How does someone survive 10 days without food or water? I know I couldn't do that.

We don't know why she was holding on for so long. After a week, my dad starting telling her that it was okay to let go. But she just didn't seem to want to leave us. We all told her over and over again that we would be okay and that we love her very much. But she kept hanging on.

On Saturday, I decided that we should watch my mom's favorite movie. It's an Italian film called Cinema Paradiso. She absolutely loved that movie. I knew she couldn't see it, because she was asleep. And I know she couldn't she couldn't understand what they were saying because it's in Italian. But I know she loved the music from the movie so I moved a tv into her bedroom and played the movie for her. Here's the trailer for the film:

It was a women's movie afternoon. It was me, my mom, my sister, both my grandmas, both my aunts, and my friend's mom. I really enjoyed it and I think my mom did too because her breathing slowed down.

That night, I wanted to stay awake with her, but I was so exhausted, I just couldn't. My aunt and I slept in my parents' bed, which was next next to the hospital bed. And my dad and my sister slept in sleeping bags on the floor.

My dad says he got up at 2:30am to give her a half dose of morphine. (He was so worried that she was in pain, even though every nurse said she looked peaceful and pain free.) He sat with her as her breathing became slower and slower. Sometime just before 4:00am, he must have started dosing off because just at 4:02am, both my aunt and I woke up. I'm not sure what woke us up, but I opened my eyes and was listening. I knew not to get too worried when I didn't hear any breathing because my mom had been taking up to 20 second pauses between breaths. As I was laying there counting the seconds, my aunt jumped up and yelled at my dad "She's not breathing anymore." She was right. My mom slipped away just when no one was watching.

We woke my sister up, which is always very difficult - she's a really deep sleeper. She later told me it felt like a dream. I told her it did for me too. And she said "No. Like it REALLY felt like a dream. I wasn't really awake."

My sister and I sat with my mom while my dad and aunt called hospice and the funeral home and all the family. She and I sat next to her and my sister said "Look! Isn't she smiling?" And she was. I couldn't help but take a picture of it. It was just so beautiful. I compared that picture to several pictures from when she was in the coma thing. That was the only picture she was smiling in. She was happy to finally go to a better place. She didn't have to fight anymore. She just let go.

We talked to her. I told her "I know you probably think this is really stupid. We know that you're looking down on us now, and what do you see? Your two girls talking to a dead body that isn't you anymore. I know you're always with us now."

Of course I broke down crying once or twice too. We all did. But after an hour of that, I just wanted to go back to sleep. I wanted to dream of something happier. But unfortunately, my dad is that kind of person that just babbles when he's uncomfortable or doesn't know what to say. He wouldn't let me sleep. After about an hour, I was finally dozing off when the hospice nurse arrived. She was way too cheery to be dealing with a death at 5:00 in the morning.

We chatted with her. Too much small talk in my opinion. After she left, the men came to take her body away.

I was terrified of that moment, but it didn't seem to bother me as much as I thought it would. I sat in the living room alone as I watched the men carry her out of her bedroom and out the front door in a black bag.

It was about 7:00am when they took her body away. My sister and I just sat on the couch. We really didn't know what to do with ourselves. We turned the TV on and it happened to be the start of the Olympics. We watched the Olympics all day. I think it was the perfect distraction.We left the Olympics on the TV for several days. I think I'll always associate the London Olympics with my mom's death. But not in a sad way. In a way that the Olympics has really helped with through this time. It's given us something to focus on that wasn't about death. And it's something that everyone can relate to and talk about. So thank you to the London Olympics.

For the next few days, I felt like we were all just waiting around the house for people to come and bring us flowers or food and give their condolences. It was awful. Staying inside all day because people expected us to be there. I don't think my dad left that house for over a week.

We were able to transport my mom's body to UCSF so that her brain could be donated to research, just as she requested. It was her dying wish and I'm so glad that we were able to make it come true. UCSF did an MRI of her brain and then took her into surgery and removed the brain. They will compared the MRI results to the actual brain so that they will hopefully be able to better read MRI scans. I hope my mom's brain will benefit other brain tumor patients. I remember about a year ago when my mom had an MRI and her oncologist said, "There is something growing, but it's probably just swelling, not tumor growth." Then 4 weeks later, another MRI and the oncologist said "It's still growing so I'm guessing that it's no swelling, but actually tumor growth." The next week they took my mom into surgery, and what did they find? It was just swelling. But because we had to stop the chemo for the surgery, the tumor cells that were there had developed a resistance to the chemo that was working. I was so mad. I couldn't believe that scientists and doctors could know so little. Give me the MRI scans, and I could tell you just about as much as the oncologist did.

I know it's not the oncologists fault though. There just isn't the research to know more. I really hope my mom's brain will be able to solve this horrible problem. I don't want anyone else to have to go through that.

The Wednesday after my mom's passing, we had the funeral. We all drove to the funeral home where my mom was being kept and two older Iranian women arrived to wash my mom's body, as is Muslim tradition. All female friends and family were invited to participate in the washing, but I chose not to do it. I was too scared at the time. Even my aunt didn't do it. Only two of my mom's very best friends went in to help. I spoke with them after, and they said that it was very spiritually cleansing. Like this was the final thing that they could do for her. They cleaned her body and prepared her and made her look nice. Looking back, I kind of wish I had participated, but I think my mom understands that I just didn't feel comfortable at the time.

As my aunt had insisted, a Muslim man came to recite the prayers and oversee the Muslim burial. I understood most of what her said, and trust me, he rambled on for about 15-20 minutes longer than he had too. It was so hot that day and I swear I almost fainted standing in the sun while he was just babbling. Don't get me wrong, I'm grateful that he volunteered his time to lead the prayers. I just don't think my mom gave a shit. I sure didn't.

After he finished speaking, several people each read things in front of everyone who was there. I read the excerpt from the Richard Bach book There's No Such Place As Far Away that I included in one of my previous posts Now Death Is Really Near.

You have no birthday because you have always lived.You were never born, and you will never die. You are not the child of the people you call mother and father, but their fellow adventurer on a bright journey to understand that things that are. Fly free and happy beyond forever, and we'll meet now and then when we wish, in the midst of the one celebration that can never end.

 My mom's friend read a poem that we actually found saved onto my mom's computer. It's called She Let Go

She let go. Without a thought or a word, she let go.
She let go of fear. She let go of the judgments.
She let go of the confluence of opinions swarming
around her head.
She let go of the committee of indecision within her.
She let go of all the ‘right’ reasons. Wholly and completely,
without hesitation or worry, she just let go.
She didn’t ask anyone for advice. She didn’t read a
book on how to let go... She didn’t search the scriptures.
She just let go.
She let go of all of the memories that held her back.
She let go of all of the anxiety that kept her from moving forward.
She let go of the planning and all of the calculations about how to do it just right.
She didn’t promise to let go.
She didn’t journal about it.
She didn’t write the projected date in her day-timer.
She made no public announcement and put no ad in the paper.
She didn’t check the weather report or read her daily horoscope.
She just let go.
She didn’t analyze whether she should let go.
She didn’t call her friends to discuss the matter.
She didn’t do a five-step Spiritual Mind Treatment.
She didn’t call the prayer line.
She didn’t utter one word. She just let go.
No one was around when it happened.
There was no applause or congratulations.
No one thanked her or praised her.
No one noticed a thing.
Like a leaf falling from a tree, she just let go.
There was no effort. There was no struggle.
It wasn’t good and it wasn’t bad.
It was what it was, and it is just that.
In the space of letting go, she let it all be.
A small smile came over her face.
A light breeze blew through her.
And the sun and the moon shone forevermore.

While preparing things for the funeral, I remember that years ago my mom had emailed me a worksheet that she had done at a workshop about finding your "primary aim" in life. She encouraged me to also fill out the worksheet, but I never did. I should probably do it now. I searched through my old emails, and found it. She listed these five things as the most important things she wanted in her life:

1. I want a life full of new learnings everyday. I want my life to be filled with personal growth and understanding.

2. I want my mom to accept me for who I am not who she wants me to be. I want us to relate to each other.

3. I want my children to be independent, intelligent and capable to make decisions in their lives that best suits them.

4. I want to surround myself with people that I love, respect and trust. I want to live in an environment free of hatred where people could accept and respect each other's differences.

5. I want to grow old gracefully, with dignity and self-respect. I want to die while I am still healthy and active.

 I can't explain the feeling of reading this list of things most important to my mom the day after she died. She wrote this list over 5 years ago.

I will do my very best to make my mom proud and fulfill her #3. I'm sad to report that I don't think my grandma ever fulfilled #2. She such stubborn lady, just like my mom was. Like mother, like daughter. My mom worked so hard to make sure she developed good relationships with her daughters.

#5. I wish #5 were true. My mom was never able to grow old. She was not able to die will she was still healthy and active. Brain cancer took that away from her.

The last assignment of this worksheet is to write your on eulogy. We also read this eulogy at the funeral. This is what my mom wrote about herself:

Throughout her life, through hard work and persistence, Noushin managed to grow from a fearful follower to a fearless leader! She enriched our lives with her sense of restless conviction to her beliefs and values. She was a creative visionary who saw beyond appearances through the depths of the people around her and was able to bring out the best in them. She had the strength to pursue her dreams despite insurmountable barriers and limitations surrounding her. Her highest sense of truth was her commitment to her friends and family. The gift she left behind is the beauty of her character that touched us all.

 This is my mom. This is her.

I also made a slide show of my mom:

Her Dad's Waiting For Her

My mom's childhood best friend had a dream last night that she was in a meadow. My late grandfather was there (my mom's dad, he passed away 10 years ago). He was wearing a crisp navy blue suit.

She asked him how she can help my mom during her journey. He said raise your hands in the air and asked God to forgive her and to take care of her. He told her that God can hear all prayers, no matter what religion.

My dad's Catholic family is here. They're praying quietly. My mom's family is reciting Muslim prayers.

I know my mom never really got along with her dad, but I know she's missed him. I know he's waiting for her.

A Smooth Transition

Two years ago, I was preparing to attend DePaul University. I was preparing both physically and mentally. I was packing everything that I needed (but mostly just wanted) to take with me to college. Mentally, I was getting ready to move away from home. I was leaving my home of 15 years to go to a school that was over 2,000 miles away. Perhaps I wanted to go so far away, even though my mom wanted me to stay in state, because my mom moved far away when she went to college too. But she moved much farther than I did. She moved from Tehran, Iran to San Francisco. And also unlike my mom's transition to college (she traveled by herself to the US), I asked my mom to come with me to Chicago to help me move in and get settled.

Looking back on it, the two weeks before college started were a very close time for me and my mom. The week I was supposed to leave for Chicago, I somehow got shingles. I know all the doctors and commercials say it's a disease that only affects old people. But I got it. And it was painful. And on top of the shingles, I also had the stomach flu! That was a horribly painful and uncomfortable week for me. Sleeping was almost impossible. But I quickly figured out that my parent's mattress was much more comfortable than mine. Laying their bed was the only chance of sleep I was going to get. So I convinced my dad to spend the nights in my room so I could sleep in his bed. For the next week, my mom and I laid in her bed and chatted before falling asleep. (Though most of the time she wanted me to stop talking so she could get some rest!) That's a memory I'll never forget.

As I started feeling better, my mom and I got ready to leave for Chicago. She helped me pack everything up. We headed to Illinois, but instead of staying in Chicago, we drove to the suburbs where one of my old friends from preschool (yes, you read that correctly) lives. She had actually already left for college when my mom and I got there, so we slept in her bedroom. She had a very comfy queen-size bed that my mom and I shared for a few days while my friend's mom took us out shopping for dorm stuff. (this is the same friend's mom who staying with us right now)

After a few days in the suburbs, it was time to move into the dorms. My mom and I drove into Chicago and started moving everything into my dorm room. My roommate wouldn't be moving in for a few days, so my mom decided to spend two nights with me in my dorm.

At the time, I remember thinking "Okay... When is she going to leave? I'm in college now." It kind of felt like she was one of those mom's who stuck around at their kid's preschool to make sure everything was okay. I remember feeling so free when she finally left.

I tell this story because I feel like it really relates to what my mom's doing now. My mom and I spent a week together in Illinois as a transition. She wanted my transition to college life to be a smooth one. Perhaps because hers was not smooth at all. (On her way to San Francisco from Iran, she had to change planes in New York. There, some stupid airlines person told her that her connecting flight was not at JFK airport, but at LaGuardia airport. My mom rushed to LaGuardia only to realize that the airlines person was very wrong. She missed her flight and had to spend the night at JFK airport, sleeping in an empty gate. That was my mom's 'Welcome to America!' Did I mention she was only 18 years old? She's so incredible.)

So here we are. My mom has been in this coma-like state for ten days. Just wrap your mind around that. She has not had anything to eat or drink in 10 whole days. But she's still breathing. Not as steadily as a few days ago, but still breathing. I always knew my mom was courageous and brave and certainly hard-headed, but I had no idea that she was this strong! I don't think I could possibly last more than 3 days without food or water, even without brain cancer!

So I have this idea that my mom trying to make a smooth transition for us, just like she did when she was taking me to Chicago. She didn't want to be awake one day, drawing and eating with friends, and to be gone the next day. She's been asleep for 10 days. At first I was a complete mess, sobbing when I was alone with my mom. I was kind of angry at my dad for telling her that it was okay for her to die. But now it's been 10 days, and I'm not sure how much longer I can just sit in this house waiting for my mom to die. Everyone who's been coming to visit are always to sad and it almost feels like this is the house of death. I try desperately to lighten the mood. I joke with my mom. But everyone else doesn't seem to think that's appropriate.

In a way, this smooth transition thing has kind of worked. I feel more prepared for her death. Now that I've had 10 days to get used to her not being awake to react to what I'm saying or to take care of her (like making sure she cuts her food into small bites). There's not doubt that I'm going to miss her and that I'm going to grieve her death. But I'm seeing this long coma as a way of he preparing us for her departure. She wants us to have a smooth transition.

Now Death Is Really Near

Sorry is this post doesn't seem very coherent. My thoughts are jumping all over the place.

On Wednesday, five of my mom's high school friends from Iran came to visit her. They weren't all supposed to come on the same day, but it worked out that they each traveled from different parts of the US and arrived at our house all within an hour of each other. Soon our house was filled with what I call "The Noisy Persians". Their chatter woke my mom up from her nap and we could tell that she wanted to be with her friends. So we got her out of bed and into a wheelchair. Though she didn't say anything, I knew she was happy to see them.

We all spent several hours having a good time. I found my mom's old vinyl records from Iran and she and her friends reminisced about the songs being played at their school dances. I also pulled out the lego set that I had bought for her that morning (Thank you to Tashi from Learning To Hope for giving me the idea). I think she had fun with the legos:

She had been eating throughout the day with relative ease. Sometimes you just had to remind her that there was food next to her, and then she would reach for it. She ate a whole plate of watermelon (her absolute favorite thing to eat) and then reached for the plate of cookies with the same fork. She knocked a few of the cookies off the table that way, but it was nice to see that she wanted to eat. That was in the afternoon. By the evening she was having a little more trouble. She didn't seem to want to eat her dinner. The only think she was interested in was watermelon. But she would bring the fork with watermelon up to her mouth and just pushed it against her lips. It was as if she was trying to get the watermelon into her mouth, but she couldn't remember that you have to open your mouth first.

We all just figured she was really tired. She had had an extra short nap that day because her friends got here. So we put her to bed and let her sleep.

But she hasn't woken up. That was on Wednesday and that was the last day I saw my mom eat. It was the last day I saw my mom's eyes open.

It's now Monday and each day things seem to be getting worse and worse. At first she could definitely still hear us. I would ask, "If you can hear me, squeeze my hand." And she would! But then that stopped. Then she would occasionally tense up her shoulder. I told it was because she could hear me, but the nurse seemed to think it was a sign of distress or pain. Well now her right side is just as limp as her left side has been for so many weeks.

I'm sitting in my parents' bed right now. My mom's in the hospital bed next to me. She seems to be sleeping peacefully. I know everyone says that hearing is your that sense to go, so everyone's been talking to her. I try to be funny when I can because I'm sure she's tired of this depressing stuff. I told her "You know Mommy, you stopped eating on the first day of Ramadan. I know your secret. I know you're just doing an excellent job at fasting. No hiding the truth from me!" My dad doesn't seem to think that's appropriate, but think it's better than what he does - just crying everytime he looks at her.

Her body seems to be slowly letting go. My sister was removing my mom's nail polish to do a different color when she noticed that her nails are turning dark brownish blue. Also, my mom's body isn't swollen anymore. You can actually see her veins and joints now. My sister also noticed that the whites of my mom's eyes are turning yellow. And now this morning, her face looks really really pale. We all know what these signs mean. We all know that they're pointing to death nearing.

Most of the time I feel like I can't think about it. But what seems like the most random times, I just begin to sob. I need my mom.

I found an email my mom sent to me last year. It's dated November 10, 2011.

My dear lovely Misha daughter,

I got off the phone with you last night saddened by your grief about my situation. Then it came to me that there is no such thing as death, there is no such thing as dyingJ! Remember Richard Bach’s book called “There's no such place as far away”? As long as you have me in your heart, I will never be far away. I will never die because I will live in you. We have had 19 very nice years together and I am thankful for having you with me all along. I am glad I got to hold an active role in your life and I am glad that you were receptive to my input. You are my lovely dokhtary (daughter in Farsi) and always will be. Don’t fear that because you can’t see me and talk to me that I will be gone for good. Death does not separate us from our loved ones, it only brings us closer. Trust that I will always be with you and I will. Remember that you will forever be surrounded by love…

My unconditional love to you,

Mommy

My mom has always loved Richard Bach. He's an author. I think my mom owns everything single one of his books. She keeps them all in her nightstand right next her bed. She was always reading at least one of his books. I think she must have reread some of those books at least 20 times. The book There's No Such Place As Far Away is a short book. It's written like it's a children's book.

It's about an unnamed person who's on their way to their friend's birthday party. The concepts of growing up and birthday parties and traveling long distances are all questioned in this book. My mom and I read this book several times together. The end has always been my favorite part. It ends with:

You have no birthday because you have always lived.You were never born, and you will never die. You are not the child of the people you call mother and father, but their fellow adventurer on a bright journey to understand that things that are. Fly free and happy beyond forever, and we'll meet now and then when we wish, in the midst of the one celebration that can never end.

I think this quote captures my mom so perfectly and everything she's always believed in. This is my mom.

I know I'm going to miss her, but I know she'll always be with me. I just know she will.


I want to thank everyone who's been thinking about me and my mom. It's really help me feel supported. And I tell my mom that she has people she doesn't even know praying for her. I really want to thank Rochelle Bugg for writing such a wonderful post dedicated to me mom. (http://thisisabuggslife.wordpress.com/2012/07/22/reflected-grief/) It means so much to me.

I'm just trying to spend as much time as I can with my mom. I talk to her and play her music.

My dad talked to the nurse yesterday, and she said that my mom would probably die within 72 hours. It's not what I want to hear, but it's what I expected.

I've been so anxious the past few days. I've been so nauseous. I haven't really been able to eat anything. I get especially anxious when I'm alone with my mom. I hate the feeling so much.

It's kind of weird, but focusing on planning the funeral really helps me. I feel like it's the only thing we have any control over. And it helps me not feel so helpless.

My sister still hasn't cried, but I think everyone's glad that she didn't go to camp.


Again, sorry for the jumbled post. Welcome to my mind right now.

What do I have to look forward to?

I found out last week that my 15-year-old sister is going away to camp for two weeks (July 23 - August 3rd). This has upset me on several levels.

1) OUR MOMMY IS DYING. How can she not understand that? I'm not sure if someone has actually said those words to her yet. Your mom is dying. But I thought it was pretty clear when my dad told us "If this next MRI doesn't show improvement, we will stop treatment. It might be time for hospice", it was pretty clear. I don't know. Maybe she doesn't know what that means.

(We had that MRI today and the results were pretty bad. The tumor has spread a lot. None of the three chemos we were trying have seemed to have worked. The original tumor in the right frontal lobe has spread to the other right lobes and even on the left side. There are also small tumors now growing in the back of her brain. Every lobe of her Cerebrum now has some tumor growing in it. The only parts of her brain that don't have any tumor are the cerebellum and the brain stem. There is a spot near the right frontal lobe that looks like the tumor is now growing in the gap between the brain and the skull. I didn't even know the tumor could do that. Also, the neuro-oncologist thinks that some of the spots on the MRI may not be tumor, but might be swelling, bleeding, or infection. None of those options are good. So the neuro-oncologist thinks it's time for palliative care.)

How could my sister go away for TWO WEEKS will our mom is DYING? I dropped out of school when I first learned that my mom had cancer. I would NEVER leave even for a few days! I told my sister this and she said "Why wouldn't I go to camp? I love that camp!" I responded by saying "Because our mom is sick?" She didn't have much to say to that.

I understand that she's in denial and that's one way of coping with everything, but should my dad or somebody tell her "I don't think you should go to camp this year." Would that be the responsible thing to do as the parent? But no. All he says is "We need to let her have a normal teenage life." I don't understand.


2) She's not allowed to bring her cell phone with her. So if something does happen to our mom, there really won't be an easy way to reach her. This just sounds like a horrible horrible horrible idea to me. How will my sister feel if my mom dies while she's at a stupid camp? In 30 years, how will she feel? Now maybe she hasn't thought about this, but again, shouldn't my dad have thought about this?!


3) The camp costs $2000. And I know for a fact that our family does not have the money to spend $2000 on a stupid camp. I'm so outrageously tired of watching my dad spend the tiny amount of money we have on stupid shit like a Kindle for my mom, a brand new laptop for my mom, a leased car for my mom. None of which she's every actually used!!!! And now this camp. I'm over here worried that there won't be enough money for me to even graduate college, and he's off spending it willy nilly. And then complains to me when I ask for money for some shoes! (Read about that here.) I still haven't saved any money for new shoes. I've been wearing the same 3-year-old sandals for months now. I have to go beg my college for more financial aid (again) next week, and I kind of feel uncomfortable telling them that my family can't afford this school, even though I now that we could if my dad didn't spend the way he does.


So I've been thinking about all this for the past week. I haven't been understanding my sister at all. But then today I was at Trader Joe's grocery store and the cashier asked me how I was doing. I was honest and said I wasn't having a very good day. He was very cheery (as most Trader Joe's employees usually are) and said "Well at least it's Friday! Everyone always looks forward to the weekend!"

That made me think. At first I thought "I don't have anything I'm looking forward to this weekend. Just a midterm in my summer psychology class." Then I thought "Do I have anything in my life that I'm looking forward too?" and I realized that I really don't. I mean I really really enjoy spending time with my mom, but I don't really have anything that I'm actually looking forward to. And you know what? My sister does. She's really thrilled about going to this camp. She really loves it. And who am I to take that away from her?

Okay. Well now I'm thoroughly confused. Should I try to stop my sister from going to her camp? Is it my place to do something like that? Will she hate me for it in the future? Or will she be grateful?

One thing's for sure. I really care about my sister.  Sometimes I'm not sure so she cares about me though...





UPDATE: My sister has decided not to go to camp!

KEEEEP IT UP IT UP!!!!

I spent the afternoon shopping with my sister while my mom was at the hospital for an Avastin infusion. It was unusual to hang out with my sister. We don't usually send much time together. We haven't always gotten along.

When my mom got home, I told her that my sister and I had had a good time shopping. And she just stared at me (she hasn't been talking much), but I could tell from her eyes that she had something to say. So I offered her a pen and paper and told her to write what she was thinking. This is what she wrote:

I know it's hard to read. It took me awhile to figure out what it said. So I'll type it out word for word (more like letter for letter):

"1. I am gladlalad that yu 2 2 hhadh a a gooood timtimartatime!
2. Keeeep it uppp it up! Keeeepit up!!!!!!it!!!!up!!!!????!!!!!"

Translation: I am glad that you two had a good time! Keep it up!


I'm so glad that she's writing. And that I can kind of read what she's writing. Now if only anyone could figure out what the Farsi says!!!

August 20th is Arbitrary

My mom's been talking a lot about her "After Party" - the term she uses for her memorial service. Read about how this whole "After Party" thing got started at my previous post here.

I told my therapist about my mom's After Party plans, and she said that my mom is actually handling death extremely well. My mom isn't scared at all. The only thing she seems to be worried about is that her After Party won't go as she planned. Although, I still can't get her to tell me what she specifically wants at her After Party.

I did get a few more details out of her. My dad asked her when she wanted to have her After Party and she told him August 20th. She said August 20th because that's the day she's going to die, so she wants to After Party the same day. Well that was really tough to hear. The fact that my mom has chosen a day that she's going to die... Wow.

So a couple days later I asked her if she's thought anymore about her After Party and she said that she's decided that she wants one of her employees from her business to be the DJ. I thought, okay, now we're getting some details.

Then she told me that she wants to have a rehearsal After Party so that she can make sure everything will go as planned. I thought this was such a cute idea, even though it is about death. I also thought it was a good idea because I've been trying to convince her that we should have the party while she's still alive, but she won't budge. So I thought with a rehearsal After Party, she could enjoy a party that she planned.

I couldn't get any other details out of her about the rehearsal After Party. I asked her when she wanted to have the rehearsal, and again she said August 20th. I said, I thought that was the day of the real After Party? She said "It's all arbitrary." I'm not really sure what she meant by that, but I asked her how she chose august 20th, and she said "Well I had to pick something to work towards."

I thought about it, and at first I though August 20th seemed like an accurate guess for when she's actually going to leave us, but the past few days she's gotten a lot worse. Things seem to be progressing quickly.

I work with my mom with activities and stuff, things to stimulate her mind. (I've been labeled the recreational therapist of the family) But every day I see her, she can do less and less. Two weeks ago, we were doing 2nd grade level math. I printed out multiplication, subtraction, and addition worksheets. After a few days, she said "I can't do the subtraction." No she can barely do the addition.

Last week I moved her down to pre-school level activities, like matching games and simple paint-by-numbers. This was one of the matching games I did with her:

I asked her to draw a line between the matching whales, but instead she connected all the whales on the right side only. So I folded the paper in half and I had her circle the purple whale on each side. Then I unfolded the paper and ask her to connect the two whales that she just circled. And she just couldn't do it. I ask her to point to the two whales she circled, she did that. But she couldn't draw a line between the two.

So now it's this week and I'm just trying to get her to draw anything. I experimenting with what she responds to best: still life, drawing pictures of photos, drawing pictures of building, etc. So far I've figured out that the best thing for me to do it to get a picture, usually a family photo, and quickly sketch a picture of it. Then I ask her to color it in. This has been working relatively well.

Yesterday I tried doing still life. I sketched a bowl with apples and oranges and told her to color it in. It didn't go well...

You can see that she just seems to be contemplating drawing. But she never actually touches the paper with her pencil. And it the end she just puts the pencil down. I never got more than a few lines of orange out of her. I think drawing is becoming too hard for her.

I feel like she's reverting back to infancy, at least cognitively. We were watching my baby videos yesterday, and I totally see similarity in how I was developing and how she seems to be un-developing. She seems to be at the infancy stage of cognition when she just likes to fiddle with things. You know when newborn babies like to just touch everything? That's what she does. If you watch the video agove, you can see near the ned that she becomes more interested in the tape on the pencil, than actually drawing with it.

So I'm think that drawing may now be the best activity for her anymore. I want to continue trying to stimulate her brain, but I don't want o buy her baby toys. But I can't think what what else to do. In some ways she at the level of a new born baby, but if I buy her babies toys, she'll recognize that they're made for babies. I don't want to hurt her feelings or anything. I just don't know what the next step is.