Thank God for Family and Friends

I'm really thankful for family and friends because I realize that some "caregivers" don't have this. It's unfortunate and I don't see how they do it. It's also funny because not until my mom passing did I even think of myself as a caregiver. I was just her daughter doing waht I needed to do.

Since I wasn't working, my brother in Alaska kept sending me money to live on and pay my bills. It wasn't a "loan". It was just his way of saying "thanks for taking care of mom" because a trip from Alaska to PA is not cheap or an easy task. He is the bread winner in his family and so he too is depended upon. We either talked or emailed daily on moms situation. It was a gift for me because at least some portion of my worry and stress of my own situation was taken from me.

My other brother Dan was having a very hard time with my mothers situation. It was almost like he was trying to "deny" it?????? I'm not sure and he would probably argue with me on this one. He does live close by and we did have "words". It selom happens and we have never stopped talking to each other but I just couldn't do it alone anymore. He needed to step up to the plate. And he did!

My moms sister was also a god sent. She spend nights with mom when needed and was just there to help out with whatever needed done. We did most of this with humor and laughter. It just got us through.

Moms friends were front and center. All you had to do was call unless they took it upon themselves just to do things without being asked.

We were very lucky to have these people in our lives during this time. Because it gets worse.

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Days and Nights/Nights and Days

By this time I had completely stopped working. I had no choice. Mom needed me. She could barely walk. We have no explanation for this except weakness. She also liked to grasp at things in the air. Medication. It makes you see strange things but she was able to laugh about it when she realized what she was doing. My days and nights began to blend into each other. Wake up at 7, shower and go down to moms. Clean, doctor appointments, medications, try to get her to eat, laundry. It was a full time job and one I cherished. The downside was my family wasn't seeing too much of me at this point. I knew the kids only had acouple more weeks of school left and I was still trying to get home before the kids, handling homework, cooking dinner...you know the drill. My step dad would come home to relieve me or a friend or family member.

Looking back I can now see that I was distancing myself from my family. Getting home I would be hounded with questions that I answered as brief as possible. I just didnt want to talk about it. This was my time away from the situation and I did NOT want to recall my day. I only wanted to slump into my bed, close my eyes and forget the days events. Unfortuntely my mother didnt have that luxury for she was up all night with the demands and pain that her body was inflicting upon her.

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Another Dose

A pet scan revealed that cancer had spread to other locations. Chest, spine, liver. They started her on a another round of chemo. Her symptoms continued. Night sweats, fevers, no sleep, exhaustion, fatigue and weak. We continued the 4 rounds of chemo and waited for another 6 weeks for the pet scan.

During that 6 week time mom seemed to really get bad. Her pain increased dramatically and she was terribly weak. She was no longer sleeping in her bed but on her recliner. The cough she had for months got worse and with each cough she was spitting up. She was put on tons of medication for the pain, etc all of which took its toll on her. She was no longer able to be left alone....hence me. My step father and everyone else needed to work. I did too but mom came first. She was the woman I loved and admired more then anyone. The doctors wanted to put her in the hospital but she declined. My step father was having complete knee surgery and she wanted to "be home to take care of him". It still cracks me up to this day. She couldnt take care of herself at this point but she did not want to be in a hospital bed when he came home.

Arrangements had to be made. Mom could not be home alone all night so we called upon friends and family to take shifts sleeping on the couch at night. I did my fair share but I did have kids that I needed to get up and ready for school because my husband too worked. We are very lucky to have a wonderful family and friends. No one even hesitated when asked to do this.

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Mom stopped working. It was just too much for her. She began getting chills and fevers that lasted for hours on end. Each fever had to be recorded and a call into the doctor. More medication was prescribed, tests ran and numerous visits to the doctors.

Radiation stopped and we had that 6 week wait til she could get tested again to see what was going on. They kept telling her that the cancer never should have come back the second time and that she was not "text book".

From this point on things moved very fast and the doctors really pissed me off. They really had no idea what they were dealing with and yet they would not consult with any other facilities for help.

"Don't put all your eggs in one basket" All too true!!!!!

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Getting back

Ok its time to getting back to our story. Last time I talked about how we found out that tumors on her spine were creating the pain in her back and she was starting radiation.

They started the treatments and started her on steriods. She continued working full time but she couldn't sleep at night. The steriods were keeping her awake and she was just drained all the time.

January 27th I was at work and got a call from her best friend there Kim. She told me that something was wrong with my mom and that Earl was coming to get her and take her to the hospital. My heart immediately started racing. She said that she thinks she might have had a stroke and that her BP was extremely high. I left work with weak knees and drove to the hospital where I knew they would go. I walked inside the ER and there they sat. They were making her wait with people throwing up around her. I was pissed. She was not to be exposed to sick people because of her immune system and there she sat with a little boy literally throwing up in a bowl 2 seats away.

She said she felt ok but I could tell she was worried. She said that she was at work talking to a co-worker and all of a sudden the papers that were in her hand fell to the floor and she couldnt speak or move. The co worker got the manager and they took her to an office where they took her BP.

The hospital visit ended up like this. Mom had a mini stroke. They said its a warning sign and that she could have more. She decided that she needed to stop working. The lack of sleep, working 9 hours a day and doing radiation at the age of 66 was just too much. I was soo relieved to hear this. At least maybe she could get some cat naps in the afternoon because she had been going for days without any sleep at all.

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January 18, 2008

One year ago this month we learned that mom had 2 tumors on her back. She was scheduled to have radiation everyday for 2 weeks then another MRI. She was having pain in her back at Christmas but did not want anyone to know for fear of "ruining the holiday". The things moms will do for their children. The tumors were starting to invade her spine which is where her pain was coming from so they put her on steroids to take the swelling down. Her first appointment was today. Mom felt very uneasy and unsure of her outcome this time. Many people tell me that cancer patients just "know". I don't understand this but I believe and respect it. Everyone is on pins and needles worrying if this is going to work. I'm going to start cleaning for her once a week so she can rest after her treatments. She is going to continue working as long as everything goes ok.

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Too much to remember

I was beginning to write again this week and just thought about going into my deleted email to see if there was anything there to remind me of what was going on at this time last year and WOW! I was amazed at all the SHIT my poor mom went through! It's just not fair and it really makes me sick to my stomach. First of all I forgot alot of information and 2 at the time I was just going throught the motions of everything, but as I read back I feel totally heart broken at all my mom had to endure. She was the best mom, grandma, friend and you have these pieces of shit running wild in the world harming others. It just doesn't make sense. However thats life right? So the story about mom will go on as I get all these email to my family members in order.

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