Be Kind...and New/Old Traditions

I am thankful, and grateful for my family.  This next week starts a time of the year with which in my recent past, I have struggled. 

As time goes on, I am feeling more excited about the holidays! Still, I am aware that there are triggers in my life.  Just 11 years ago on the 22nd, my mom passed away from Brain Cancer; it was also a day on which I was celebrating my 20th wedding anniversary. Daily I think of my mom with joy in my heart, but I was older when she passed, unlike my sister who was still a young adult.  My sister was just 26 years old, a few years married and had a one-year old when our mom died. My sister and I talk, and I know she misses our mom a lot.  I think about my sister's three children, and all they have missed by their grandma not being around.  I do find myself recalling family traditions from my growing up days and I try to share those with my nieces and nephew, as well as with my sister, and my own children.  Two years ago it was impossible for me to even think about the holidays.  I know that wasn't fair to my own two kids, but emotionally it was just too much for me to handle.  As my children grow into young adults, and as I am becoming more distant from my past history, I am finding that I am able to re-invent how WE celebrate the holidays.  We are creating our own new, family traditions.  We blend traditions from my youth with traditions from my children's life.  I am able to choose all those traditions which I have enjoyed.  Thanksgiving is now MY holiday.  I have claimed it back as a way to help me enjoy life.  My sister and her family will come to my house to help continue building our new traditions.  I will be in my element as I work in my kitchen to create our feast.  We will dine on those traditional recipes that were ours, along with those traditional recipes that my children grew up on.  We will play games and laugh.  We will play music and dance.  We will take pictures and veg-out.  We will go to my downtown and be witness to my community coming together to kick-off the Christmas season with the official Canopy  of Lights lighting.  We will get out my Christmas tree and decorate my house.  Just a few years ago I couldn't do this by myself.  The life lesson I've taken away here...don't do it alone.  Count on others in your life!  

Another life lesson, is that we need to be kind to others.  We need to be kind not just to those in our community in need, but to our friends, our family, and to ourselves.  Heaven knows the holidays are hard, period.  Commercialism has made society feel we all need to have the perfect illusion of time spent together: thank you, NOT, Hallmark.  But, the holidays are extra hard when one has gone through loss, and everyone knows someone who is dealing with, or has survived loss.  One may know loss as death of a loved one or beloved pet, rough spots in a relationship, or divorce. Some people may be dealing with impending loss of life, financial stability, or family members struggling with addiction. When my mom died, it was the day before Thanksgiving in 2006.  Thanksgiving and Christmas were surreal that year. Dealing with loss can manifest as depression. Stress compounds feelings, too. As the year is drawing to an end, there are deadlines to complete, mid-year graduations making some wonder what they should be doing next in their life, or stresses in the workplace.  Please reach out to your friends and neighbors.  Just send hello, or hey, how are you doing?  My personal experience has been to hunker down in my house and to wallow in my own sadness instead of reaching out to others.  There were times when it was hard to adult, especially when others seem to have it all together and be so happy.  Illusion is a powerful weapon. I am happier now, but I do still watch those around me and judge myself against the illusions I see.   

Be kind.  

Don't feel you have to do something just because it's always been done a certain way.  There is joy and power in re-inventing happiness.  

Happy Thanksgiving my friends!  

~Lisa Kroll
     love warrior, sister, friend, etc. 

Crossroads...

Warning: 

Author Over Sharing Alert

 

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climacteric

/klaɪˈmæktərɪk; ˌklaɪmækˈtɛrɪk/

noun 

1.

a critical event or period

2.

another name for menopause

3.

the period in the life of a man corresponding to the 

menopause, chiefly characterized by diminished 

sexual activity

4.

(botany) the period during which certain fruits, 

such as apples, ripen,marked by a rise in the rate 

of respiration

adjective 

5.

involving a crucial event or period

-----------------------------------------

A.K.A. ...Really?  WTF????  Are you kidding me?  

Did I hear that correctly?  

I have reached a point where I need to write in order to move forward in my life.  I have tried to keep my thoughts private.  I have gone through my entire life keeping private journals, and periodically have branched out.  Now, I need to branch out once again.  

I am a positive person.  Bad things in life do happen...just 8 years ago I sat with my siblings as we helped, make the choice for, our comatose step-father to be taken off life support.  He had suffered an aneurysm while dealing with west nile.  He was treated with antibiotics just after his first test for west nile, so his results were inconclusive according to the CDC.  To test positive meant two tests back to back testing positive, without antibiotics to help.  Regardless, four weeks later, while still in a comma and having a temperature then entire time of 104 degrees plus, my siblings and I sat with him in a very small hospital room.  It was the middle of October, 2008.  That event alone would have been enough to suffer through.  

But that event happened five months into another life changing event for us.  Our mother had stage 4 brain cancer.  GBM.  Glioblastoma Multiforme.  My mom's GBM was the reason I started blogging.  Hopefully I helped others who were searching the web for info on what to expect.  I had done that and found little information to grasp hold of.  My step-father died 31 days before my mom.  

Rinse and repeat.  Except mom was allowed to pass over at home.  

Pretty crappy stuff for a positive person to live through.  But, I did it with my siblings by my side.  I did it surrounded by family, and friends at home (where my mom was).  I did it with the support at my own home; my husband and children, and friends back here.  Nourishment was all around me.  

Over the next year, my husband and I would move into a bigger house with our two growing teens.  We moved right next door to his parents, next to his childhood home.  His parents were starting to age, and we wanted to be there for them when the time came.  About three years ago my father-in-law started his rapid health decline, and passed away.  Little did I realize change in my personal life was on the horizon.  

In December of 2012, I started contemplating life with an empty nest.  Our baby would be graduating from high school in May.  It was time for me to fully enter back into the work force.  To do so, I decided to go back to graduate school.  I wanted to earn my masters in Elementary Education, become licensed and have my own classroom.  (Side note:  I have been working part-time for the past 13 years as a reading teacher. I have not been sitting around eating bon-bons.)

Long story short, I worked my butt off and was accepted into graduate school.  Somewhere along the line of life, my husband decided he wasn't attracted to me any more.  He has told me so at least a half a dozen times over the past year.  He has said I've never been the person he's wanted.  I haven't supported him.  I don't keep the house clean enough for him.  Living with me is hurting his health.

wow.  Emotionally I am spent.  I have been verbally abused behind closed doors for 27 years.  I have felt my role as a loving wife was to make everything perfect in our household for my hard-working husband. He really is hard-working.  He really is successful at whatever he puts his mind to.   I am puzzled as to why I have thought so highly of him for all these years though.  Nothing has ever been good enough for him.  

No more.  

Divorce is in my future.  I never thought my life would play out this way.  My husband has Narcissistic Personality Disorder. He has "dismissed" me.  Literally, I do not exist to him.  

The more I type, the more I delete.  So much to say, so little I want out for all to read.  I feel scarred.  Life has been challenging.  I long to be loved and respected.  I long to share time with someone.  I did not expect this.  

If you ask me in person what my husband said to me on Mother's Day 2013 while we laid in bed together, you'd understand the level of his verbal abuse and why exactly I needed to go, alone, to the Grand Canyon last summer.  I have been in therapy for over a year.  I was told I could continue to believe the things he tells me or I could go out into the world and discover what the world really thinks of me.  

I'm glad I ventured out.  Life is hard, but I can still smile...most of the time.  I am guilty of loving.  This is his problem, not mine.  At the end of November I will officially be finished with my student teaching.  Just a few more hurdles to jump!  Three of my five licensing exams are under my belt.  My thesis paper research is finished, I just need to write it.  

I will be reaching my dreams of being a classroom teacher by the end of the year.  I hope to have full time employment doing what I love shortly after that.  I am not the first person in the world to go through a divorce.  I know I can, and will survive and shine once more.    

My Hootie blog will become active again as my time allows.  The joys I experience in life need a place to reach others!  Until then, I do have a teaching blog.  Visit me there too, if you'd like:  It Takes a Village to Raise a Teacher. 

With Katy Perry!
Okay, yes, it is just a cardboard cut out. 

Life is short.  Family is precious.  Our faith gives us the courage to grow and love. 

~Lisa   a.k.a. Hootie!

May is National Brain Tumor Awareness Month

It was three years ago today when I found out that my mom had two brain tumors and needed to have immediate surgery.  

Tomorrow would have been my mom and Art's wedding anniversary.  It would have been 22 years for them.  I remember being with my mom three years ago as she woke up after surgery.  What a way to spend one's anniversary.  

I am not sad today.  No tears.  Last year, two Illinois State Representatives tried to have May proclaimed  as National Brain Tumor Awareness Month.  I bet with Senator Kennedy's situation soon more people will call attention to this disease.  In a few weeks the second annual Coach Hep Cancer Challenge will happen here in town.  I still have my red laces from last year.  I hope all who can will support Brain Cancer/Tumor Awareness.  If Brain Cancer touches your life it will change you mentally(no pun intended) and emotionally.  I meant as a bystander too.  Maybe that's a biased statement and any cancer/disease that touches someone changes them and their loved ones.  But I personally know that if BC enters your life it cannot be cured right now.  A lot of other disease seem to have more hope with them than BC.  A few months ago I ran across another cause site that sells Grey T-Shirts to support Brain Cancer Awareness.  I seriously thought about getting a shirt that says "I wear Grey for my Mom."  But I couldn't do it.   

I keep asking myself why?  Why couldn't I buy it?  The answer, I think, is because I am moving on.  I don't want to be doom and gloom.  I want to remember the good and not be dragged down by sadness.  Then that saying I use to say pops in my brain, "Life's too short!"  I will choose to suppose a cause, but to Enjoy Life!  

Challenges..."Don't Quit!" Attitudes

My gym shoes have a new look!

My red laces show my tie to cancer. This weekend, on Saturday, I will run/walk a 5K with my daughter. It is the first Coach Hep Indiana Cancer Challenge here in Bloomington. Here's the link: http://www.coachhepcancerchallenge.org/index.html

from the website: "IU Football Coach Terry Hoeppner faced every obstacle, even brain cancer, with a positive, "Don't Quit" attitude.

Help us as we apply Coach Hep's determined optimism to funding cancer research and treatment right here in Indiana. Sign up now for the first annual Coach Hep Indiana Cancer Challenge on Saturday, May 10 in Bloomington, Indiana.

You can run, walk or ride a bike. And when you register, you'll be helping to support the IU Simon Cancer Center and Olcott Center for Cancer Education.

If you can’t participate in a Challenge event, help out in another way. Donate online, volunteer or become a sponsor."
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Having personal experience with a loss due to brain cancer, I know how much - or really, how little - is known in this field. Helping fund cancer research is a small thing I can do to help make a difference.

I'll run/walk because my mom can't. Maybe my few dollars donated to research can find ways to help others beat GBM.

:)

Winning The Game...

Mom's last call:  Click on the link on left side of blog to hear. Deleted: Only on my phone now...

Once a month or so I get a reminder on my cell phone that I have an old message.  I can pretend that she is making the last call once again, and that I won.  

Truthfully, it wasn't much longer after this call before the brain cancer really set in and I was unsure if she remembered who I was.  It is so nice to actually hear her say she loves me.  Kind of weird, I know.  Validation.  It's what I needed from her.  

The tears flow freely now... I still miss her.  

FYI...

FYI, When your mom dies of brain cancer and then you get a headache, it ALWAYS makes you worry. It doesn't matter that the doctors said your chances of getting GBM are next to nil. A headache makes you worry. Doctors don't know everything.

Indiana's Coach Hep, another GBM loss?

So having all the knowledge I have of GBM and living in Bloomington, Indiana it wasn't a surprise to me that Coach Hep died this morning from a brain tumor. But information has been kept very private (rightly so), was it GBM? Only 18 months for his battle. He was 59.

I feel for his family. I am sure they were able to cherish their time together. I hope that with Coach Hep's battle maybe some more information about brain cancer was gleamed. There is a Proton Therapy clinic here in town, hopefully it was used and useful and can help others in the future.

I still have a lot of unanswered questions...what causes primary brain cancers? Can we prevent them? Am I at risk? Are my loved ones and friends at risk? Is it environmental or genetic? I have compassion too...it's hard to watch someone you love be unable to control what is happening to them. It's hard to know what to say and what to do to help them. What a demeaning disease brain cancer can be.

God bless you Coach Hep. We'll all say an extra prayer for your family.

Another loss...but another angel above...

I just found out today that a cyber aquaintance of mine who had GBM like my mom passed away on March 11th. I am so sad for his family.

I can imagine being in his wife's shoes - we are probably about the same age. Yet, I can't quite imagine being his wife. I know what this disease can do to people. How strong she must be to have witnessed and weathered Glioblastoma Multiforme. It steals from us who must go on, emotionally. It tires us out and makes us wish for things we know are inevitable. We don't want our wishes to happen, but we do, how torn this disease makes us. I wanted the end for my mom, but I wasn't ready even when that moment came. If it was my husband, I would be so lost. With my situation, I had my family to come back to. My heart is breaking for this wife I don't even really know. She's too young to have lost her partner.

I know what it's like to be a child and lose a parent to GBM. Quite frankly, it stinks. Did I tell her I loved her enough? Did I make her comfortable enough? Did she know it was me? Was there more I could have done?

And then there is the wonder...the doctor told me the chances of me getting this disease are practically nil, but what if? I am her flesh and blood. I have inherited lots of other things from both my parents. How can the doctor be sure? What if? What if? What if? It's too scary.

Life is too short. We do need to live each day to it's fullest. Being sad is part of the process of grieving - this I know. Those who have gone before us would want us to enjoy the time we have here.

Everyday I am trying to see God around me. Today I am seeing the change of seasons. New flowers are blooming and the sun is shining. I think I saw a smile in the little yellow crocus at my lawns edge. It's telling me to LiveStrong.

I need a bit more time to heal. I am working on it though. I hope my cyber aquaintences family will be able to smile again soon as they recall the fun and love they shared.

Looking for Joy

Depression is around me now. I feel abandoned. Yes, I have my husband and kids, but I feel like that's it. At times I feel blase about life. Who cares? Why do anything? It doesn't really matter in the end. And then at times I see the beauty and wonder in the little things...birds singing, gorgeous sunrises, the constellations.

I thought having 2006 end would help things. Maybe I need more of 2007 to go by to see the difference. I know I need to give things time. I really need to be able to laugh again and know it's okay to laugh. There are those constant thoughts in the back of my brain that I am alive and my parents aren't.

I need balance. This is normal. I know it is. Things will be fine, in time.

Paranormal Activity, Spirits visit us and What time is dinner in Heaven?

On November 10th, my mom suffered a very long seizure in relationship to her brain cancer. It started at about 4 pm and lasted until about 6pm. She was given valium to try to help relax her. Our hired helper, Follie, had instructions from Hospice. My sister showed up shortly after the seizure started, she was there with her father-in-law for the evening. He's from VA and wanted to visit with mom.

Mom wouldn't look at Bean and she wouldn't talk, or couldn't. Hard to tell. I was on the phone with Bean a lot of the time offering my opinions about things. Mom had told both of us that she wanted to stay at home, not go back to the hospital. We were hoping the valium would work that was in the "care kit" from hospice. If we ran out and she wasn't responding we'd have to send mom to the Hospice House for as bit so they could help manage this situation.

fortunately the at-home meds worked. Bean went home for the night and I made plans to come the next day.

I arrived Saturday, Nov. 11, late morning. Mom was still having lots of small seizures on her right side. I didn't realize what they were at first. It took a visit from the hospice nurse to enlighten me. She called them baby seizures. Mom had not eaten or drank anything since Friday morning. She couldn't swallow her pills. We needed to start giving her her anti-seizure meds via rectum. Not fun, glad we hired Follie so we could let her "do the dirty work".

Mom was fairly unresponsive on Sat. & Sun. I didn't even think she knew I was there. It was so hard to tell. I held her hand a lot, stroked her cheek and told her I loved her again and again. My Aunt Pam arrived from Virginia on Sunday early afternoon. Bean was able to come back on Sunday evening. Mom seemed to "wake up" once Eileen arrived. She started to try to talk a little. We all got very excited. We called all mom's brothers and put the phone to her ear so they could talk to her. Then we called our brother and had him talk to mom too. I had called him several hours earlier and asked him if he was sure he didn't want to be with us. He assured me he couldn't go through this again. He said he was fine staying away. When we called him to have him talk to mom I confessed to my Aunt and sister that I had all ready called Larry and asked if he didn't want to come. I also told them his answer. My Aunt got on the phone, told Larry she didn't think mom would make it through the night and he needed to get there. He arrived at 1am.

Shortly after he arrived the power went out at the house. It was out for two hours. That wasn't so bad except that mom was on a microfiber air mattress bed. It deflated quickly. We checked on her every 15 minutes. She slept through it all. Just before the power came back on we tried to go back to sleep. I was sleeping in the recliner by mom, AP was on the floor on cushions and Grams was on the couch. Larry was on a couch in another room and Bean was in the back bed, as was Follie - in her own room and bed. AP and I head someone talking just before the power came back on . I told her I thought it was Grams talking in her sleep and she was saying "I love you". The next day AP told me that's not what she heard. She heard, "I am the holy spirit."

Mom did make it through the night. She also made it through another 10 days. She went 12 days total without food or water. It was very hard to watch her waste away. My brother did not stay past Tuesday of that week. He could not handle it. My Aunt and I were there for the whole time. We needed to be there for Grandma. Bean was back and forth, she did have to work a bit.

During the next 10 days many unexplained things did happen. Mom told us on that first Sun, Nov. 12, that she saw my dad and Art but not Grandpa, her dad. She told us it wasn't time for her to go yet. We thought she left us on two or three occasions. She told us, Bean, Larry and me that we scared her all being together. Previously she had said that she knew Larry would only come visit her if she was dying. Bean and I blamed her fear on him! He deserved the blame, he couldn't mentally come and be with her like we could. We understood, but it still made us mad and sad. Bean and I were fine with Larry leaving. During the next days we tried rotating who was at home. We'd announce who was going out, who was staying, when "the coast was clear". We all knew mom was dying and felt she was waiting for something. Did certain people need to be there or away? We kept telling her we loved her and it was all right if she needed to go. We wanted her to be at peace. We told her she was a great mom, friend, daughter, etc. We told her we'd miss her, but we'd always have her in our hearts. We tried toasting mom, we told fun stories from her past and talked about what she had accomplished in her life. We did make funeral plans. We planned the church service, picked out flowers, worked on her obit and picked out her outfit. Morbid? Probably. Necessary? Absolutely. The "we" who toasted and laughed with mom were Bean, AP(mom's sister), Aunt Tammy(mom's sister-in-law) Grams, Follie, Carol (Dad's cousin), Colleen (Carol's daughter) and Angie (long time neighbor and friend). There was a lot of female bonding that happened. We laughed and cried together. We drank wine, mud slides and ate ice cream together. We all hugged on mom A LOT! In fact one of the hospice nurses told us that maybe we were being too encouraging to mom. She politely told us we stimulating mom too much. After day 10 we 'low-keyed' things more. The lights were turned lower and we were much more quiet. We tried not to touch mom when she was sleeping. Letting go is very hard for the living and the dying.

More paranormal things happened...

One night the TV turned on and off by itself. It was the night we were toasting mom. Grams turned to me and asked why I turned on the TV. I pointed out that the remote was about four feet away from me, and everyone else for that matter, and that I didn't turn on the TV. I did pick up the remote and turn towards the TV only to have it go off BY ITSELF! We all looked at each other and said, "Art is here!" It was creepy, but good at the same time. When I was sleeping I felt someone pull on my upper arm three times. It was like they were trying to get me up. No one was around me. All in the house were asleep. AP and I heard three voices whispering by mom one night...Not just one single voice. We were sleeping just 10 feet away! I could feel the hairs o my arms raising up a lot. It was actually a very comforting feeling. At my mom's house, which is just two miles from Grams, the TV in Art's former bedroom kept going on and off my itself when Bean and I would be over there. We'd just start talking out loud to Art. We'd keep telling him that he needed to come and get mom. We were going to be okay.

On Sunday morning, November 19th, mom woke up at about 10:30 and she seemed very alert and clear. She was counting, "50, 51, 52, 52, 52, 53, 54, 55, 55, 55, 56, 57. 57." I asked her 57 what? She looked at me and said, "57 people." She had only been barely answering our questions lately. She hadn't started any conversations in weeks. Just eight weeks ago or so I was at physical therapy with her and she couldn't count to 5. I asked her where the 57 people were and she said, "Here. 57 people are here." I asked her if they were people or angels? She looked puzzled and didn't answer me. I asked her if I would know them. She told me, "I don't think so." I asked her if my dad, her first husband was here? She looked around and smiled and said, "yes, he's here." I did get excited and said, "mom, I know dad!" I asked if Art was there and my Grandpa, her second husband and dad. Again she looked around and said yes. I told her that grandma would be pleased that Grandpa finally showed up. Truthfully, I was thinking he'd been down in hell, he was that sort of guy! I also asked mom if she was waiting for Grandma to go to heaven (emotionally this has all been really hard on Grams). Mom looked at me and said, "No, It's not her time." I asked her if it was her time and she said, "Almost". My cousin's wife was there and she said, "Aunt Penny, will you tell my mom and brother I said hi?" And my mom looked at her and said, "I will tell them at dinner."

On September 27th, my sister and her husband celebrated their third wedding anniversary apart. Bean was with mom when she got the sad news that her cancer was back.

On November 22nd, I was with my mom celebrating my own wedding anniversary. Twenty years. The night before I called my husband and I told him I really needed him and the kids to come north. After school on Wednesday he loaded up our 12 and 14 year old and they were on their way to see me. I had been away from them for two and a half weeks. I thought I was only going to be gone for one night.

My mom passed away with my sister and I holding her hand and telling her we loved her. We reassured her it was okay to go. We would never forget her. We kissed her cheeks and cried. Follie was with us too. Nearby were Grams, mom's sister Pam, brother Mike, his wife, Theresa, Bean's husband was there putting their son down for the night. My husband and children arrived just five minutes later. Perfect timing? I think so. On Tuesday, November 7th I had brought my kids north to spend the day with my mom. She had only been staying awake for 15 minutes at a time. When she knew my kids were there she stayed awake for over three hours. We had a great day and visit. On the way home my daughter thanked me for driving them up. I am glad my kids got a chance to see mom's bright eyes on that Tuesday. They could feel her love for them in her look.

It's been two an a half weeks since mom has been gone. I seem okay during the days. At night when I try to go to sleep I cry. I do miss her. I just can't believe that she and Art are both gone. He was only 58, and she 64.

Life is interesting how quickly it can change. I missed my dad a lot too. He's been gone for 21 years now. I feel that I did get to 'feel' his presence in the past month. I also know he and mom will see me again in heaven someday, a long time from now! I know mom is at peace and enjoying herself with dad and Art. Who could ask for anything more?

Dying sucks

I just got home last night from quick trip up north.

Mom is withdrawn. She won't engage in conversations. She won't look at me. She'll tell me she loves me when I say it first.

She's in the hospital right now and due to be released this morning.

She's so in her own thoughts it's very tough to be with her. I felt almost invisible.

I felt like I was trying to be there for mom and for grandma. At least grandma was genuinely happy to hug me.

I know this cancer and dying are the reasons for mom's behavior. It still sucks.

A "living" funeral...a celebration of life.

I went back up north on Friday, yet again. When I got there a nurse from Hospice was with mom. Someone from Hospice had been out earlier in the day to evaluate things. The nurse who came back was meeting with my sister and I to tell us what mom does and doesn't qualify for. Mom seems to be doing okay in her current situation. The health assistant we hired, Follie, can handle things right now. The hospice nurse asked mom if she wanted a catheter yet. Mom said no. She can't hold her urine at all, but I realize this is a dignity/last stage thing going on with mom. She asked me if my kids know she wears diapers. I told her yes, but we call them depends, not diapers. The Hospice nurse also was able to get mom more nausea meds. Mom now has a patch behind her ear - in addition to her pills she takes every 6 hours. The Hospice nurse asked if mom wanted a hospital bed - she said yes. On Saturday it arrived and we have mom set up in the living room. She's more involved with what is happening during the day. At least she can see what's going on and watch TV.

Mom can barely walk. In fact, standing is hard for her to do. She can't use her left foot/leg at all. When we get her to stand up it is so hard to get her to turn around so she can sit in the wheelchair. Mom signed forms for no CPR and to not be resuscitated, when those times come.

The Hospice nurse also gave us a booklet on what to expect during these next final months. Mom is definitely in withdraw. Friday night she wouldn't talk to Eileen and me nor would she look at us. Eileen kept pressing her for what she was thinking about and she wouldn't answer. I told them I thought I knew what she was thinking about. Mom looked at me with a sort of look that said, no you don't. I asked her if she wanted to hear my thoughts but told her they were brutally honest. She nodded yes. I told them I thought mom was scared to die and leave Eileen. Mom's tears confirmed this for me before she nodded yes once again. It was getting late. I was suppose to be the one staying with mom, but I could tell she really needed her baby. Eileen said she was going to head to mom's house to sleep for the night. I told my sister that what mom really needed was for her to cuddle with her. Again mom had tears and she held Eileen tight. As I was kicked out of the room my throat was dry and I couldn't swallow. Total rejection as a child. My relationship has never been like my sister's with my mom. Did it hurt? Hell yes. Do I realize the entire dynamics of the situation? Of course. It still hurts.

I had trouble falling asleep out on the couch. I woke up both times Follie woke up - I heard her door open as she went to take care of mom. I went back and helped anyway. It is after all still my mom.

On Saturday my sister had to leave by 5 am. At that time I was welcomed back into mom's bed. Her new bed arrived at about 9. After it was set up and made we were able to get mom into it. Now she can be more comfortable with her head up and down at the press of a button. She can look out the back windows at the leaves changing color and the squirrels playing in the trees. She can see the TV and control the remote! She can be near grandma who fiddles a lot with nothing in the kitchen.

At about noon Follie and I got mom into the bathtub - she sits on a chair in there - and she had a bath. What a task! I had to physically stand in the tub and hold her naked body as I helped her out of the tub when she was done. This might have been her last bath in the tub. She's just too hard to move around and she can't help us at all.

That afternoon my sister, her husband and young son arrived. My sister and I took mom and Follie up to see Art. What a mistake that was. He is much worse than I had imagined. Any doctor who tells my sister that he can pull out of this and be okay is out right lying to her. I think Art will permanently be this way, but that is just my opinion. What you see when you see him is a shell of an unresponsive person. He has had a fever again (off and on) of near 103. He has a trach, a feeding tube, a catheter and bowel bag. The room smells of feces. The nurse on duty said they did get him to open his eyes when they called his name and squeeze their hand just slightly, earlier in the day. In personthe nurse admitted that to rouse him you have to talk really, really loud right in his ear. The other day a nurse told me, "well, he does have some brain damage and some swelling, but he's just taking a few antibiotics and mostly meds. to control his seizures. " I thought the swelling was in his brain. He might have some there, but his hands are really swollen too. He has those pressure socks on his legs to keep his circulation working. As for the brain damage? No doctor has said anything about that yet. I am sure the nurse is correct.

Eileen was pissed because she hadn't heard from a doctor on Art in over a week. She asked the nurse to have a doctor call her on her cell. She got a call late Sunday afternoon, but she didn't say what the doctor said because we were with mom at the time. She gave me a look though. On Saturday she had said she was worried the doctors were going to tell her this is as good as it is going to get for Art. I told her I think that is what indeed they will say. Her look kind of confirmed that, but she still hasn't officially said anything. I think this has reached the point of "Too much" for my sister to deal with. She seems to be taking a few breaths right now to keep her head above water. Eileen commented to other family members that she is waiting to have a meeting with a social worker and a doctor to discuss Art's long term care and prognosis.

Another sad part of Saturday night was the fact that mom wouldn't look at Art. She wouldn't talk to him and only touched his hand once when we pushed her. It was horribly painfull to watch. Eileen commented that it may in fact be the last time they see each other and they couldn't even say a proper goodbye. Hopefully they were connecting somehow that we were unaware of.

Grandma's house has fleas. I had brought up some carpet spray and did the carpet once Grams went to bed Friday night. I was able to vacuum in the morning. Her bedding really needs to be washed. I know she is insulted that we all keep pestering her about how things are. I tried to play it off as the cat and living in the woods. Both things are true. Better house cleaning wouldn't hurt, but it's not the cause of this problem. I did treat her cat last weekend.

I spoke to Grandma last night. She said the Hospice nurse was out and checked on mom. She also told me the hospice nurse told her that once this cancer gets to mom's spine she will just stop breathing. And the nurse did tell Grams this is a very fast growing cancer. I know this may be the reality of things, but does Grandma really need all this information!!!!!!!!! Why can't she hear this information when we can be there to give her a hug!

Grandma was getting ready to take her trash down and I told her Follie could help her if she wanted. Grams was feeling argumentative and said, I don't think she'd do that. I reminded her Follie is there to help mom and do light housework. Grandma said she didn't want to be critical but...She doesn't think she, Follie, likes to do housework. I told grams that I would talk to Follie for her if she wanted and Grams went a little berserk. She started to panic that if I said anything to Follie she may not take good care of mom. I told Grams I was just worried about her too and she told me she's lived a long life and things are fine for her. Basically she's ready to go. Grams said mom should have a lot of years left and since she doesn't Grams doesn't want anything to interfere with Mom's care quality. Grandma asked me not to say anything to anyone about this - obviously I am not keeping that promise. I won't say anything to our uncles or aunt, but I did tell my sister about what seems to be happening.

On Saturday, when U.Joe was there, he asked me to go get gas for him for the mower for next week. I did not go get gas. The lazy bum can drive the 2 miles to the gas station himself. My time up north is meant to be spent sitting with my dying mom. I did hear Joe telling Grams about the "home" near him that he wants grandma to come and live in. He said he's going to be getting her a brochure and send his siblings one too. Personally I think he's putting too much pressure on Grams. What she needs is support for what she's going through right now, not plans for her future. I don't think he realizes that taking care of mom is Grandma's reason to live right now. Also, A.Tammy called Grams on Sunday - just before the celebration. She said to grams, "what party? We didn't know about it". I told grandma that she was feeding her a line that EVERYONE knew about it - no invitations were sent out, it was all by word of mouth and e-mail and that we had just talked to Joe on Saturday about it. UNBELIEVABLE!!!!!

A Celebration of Life on Sunday.
Why do you invite people to come see a person who is dying?

The answers are for closure, to spread love and hope. To be reminded of your blessings and what a blessing you are and have been. To smile a bit, to cry, to support. To take pictures.

Last week my sister and I decided we needed to have a party to celebrate mom. Eileen made a phone call to just the right person who reserved a hall - free of charge for us for a few hours and took care of getting refreshments provided too. Dad had been a volunteer fireman over 2o years ago when he died. Mom had been a member of the Ladies Fire auxiliary for as long as I can recall - at least the past 30 years. The current president of the auxiliary knows what is going on and was able to offer us the fire house and had the other ladies make the food. Blessing! Someone else put together a power point presentation honoring mom and all she has done for the firemen and the community. It was awesome. How do you thank others for the gifts of love they gave us that day?

I had brought paper, pens, markers, tissues and hand sanitizer up for us to use. We had people record their memories for us to read to mom over the next few weeks. Eileen got the place together - bringing memorabilia: quilts mom made and a ton of pictures.

I had the job of getting mom together. I put make-up on her and a wig. We got her into a nice outfit. Grams, Follie, Mom and I arrived fashionably late. Mom really didn't want to go especially as the event drew closer. I think she was scared she might throw up in front of everyone. But, Mom seemed to enjoy herself - especially the food. My husband asked me during the event if we needed to watch what she's eating. Mom is after all a diabetic too. The good news is, we don't. She can have whatever her heart desires. Mom truly looked beautiful. My children have seen her funky Mohawk-do and my daughter's, "Grandma you look beautiful!" was extremely sincere.

The celebration was to last for three hours. Mom only made it for about 1 1/2 hours. My husband took her back to grandma's while we all stayed to wrap things up. When we returned to grandma's an hour later mom was extremely tired and snoozing in her new bed. She woke a bit and we all told her we had to leave. I am very glad we did this for her and for us. She may not have been at the right "stage" in this process of dying for what we threw at her, but given what this cancer will do to her in the next few weeks or even days, it was right.

When I talked to her yesterday morning mom was still sounding very tired. I think that is just how things are now with this cancer. By the end of our three minute conversation she was asking me weird questions...Where did I sleep last night? I am not sure who she thought I was by then in our conversation.

I called her today on her cell and she didn't answer at first. She called me back and it took her a long time to say hello. I could hear the TV in the back ground. I think she was distracted by what was on the tube. It sounds like she's not sleeping through the night anymore, but she hasn't been for the last month of my visits. It also sounds like even with the new nausea meds she is still getting sick, more than ever actually. Is this what the cancer does?

I will not be going back up north this next weekend. I feel guilty that my life is continuing as normal. I missed a lot with my own children last weekend. I need a weekend here. I have decided that unless things up north change drastically, I will be heading up in two weeks. I wonder how quickly and much mom will change by then. This whole think really stinks.

Cancer sucks.