Normally, Grandma does not want to go out in the evening. Tonight, when my mom asks if she will go out with her, she readily agrees because she knows that she will be housebound for the next few days due to the expected extreme cold weather this weekend. By Monday, the temperature will be day time high at -29 C and night time low at -34 C. Grandma will have her first radiation treatment on Thursday. The weather will be a little nicer. Day time high on that day will be -16 C and night time low will be -20 C.
Emily and Peter will come home on Friday and Cousin Andrew's wedding will be on Saturday. Hopefully the weather will improve for them by then.
When it is so cold, it will be nice to go some place warm. I have no idea I am going to Florida soon. I will be very nicely surprised by the time I realize what is going on. It is very kind of Emily and Peter to be willing to invite me and my mom to go to Disneyworld with them from December 25 to January 5.
Friday, December 12, 2008
Thursday, December 11, 2008
Repeat
I went over to visit my mom tonight. When I saw my new CD player, I remember my mom taught me the word "repeat" last night. I said "repeat" to her, so my mom set it up for the CD player to play and repeat the song "Silent Night".
I watched for the song to finish and I jumped to search for the song. My mom tried to stop me, but she was too late. It was, then, my mom's turn to watch for the song to finish. She sat right by my CD player and stopped me from touching the buttons. She told me "repeat". Sure enough, I didn't need to do anything and "Silent Night" came on again. I think I am beginning to understand the meaning of "repeat" now. I didn't touch my CD player for the rest of the evening.
I watched for the song to finish and I jumped to search for the song. My mom tried to stop me, but she was too late. It was, then, my mom's turn to watch for the song to finish. She sat right by my CD player and stopped me from touching the buttons. She told me "repeat". Sure enough, I didn't need to do anything and "Silent Night" came on again. I think I am beginning to understand the meaning of "repeat" now. I didn't touch my CD player for the rest of the evening.
Tuesday, December 9, 2008
On the Mend
Yesterday morning, Grandma didn't even want her coffee. That is serious because she loves her coffee. She is feeling better today and she is eating reasonably well.
Grandma attended the Christmas celebration at church this morning. Many of her friends commented on how well she looks.
I am still fixated on "Silent Night" and sometimes I sing along. I have a new CD player for Christmas. I am keeping it at my mom's home so that I can play my CD's when I go visit. This CD player has a "Repeat" button. My mom is teaching me to set it to play my favorite song over and over again.
Grandma attended the Christmas celebration at church this morning. Many of her friends commented on how well she looks.
I am still fixated on "Silent Night" and sometimes I sing along. I have a new CD player for Christmas. I am keeping it at my mom's home so that I can play my CD's when I go visit. This CD player has a "Repeat" button. My mom is teaching me to set it to play my favorite song over and over again.
Monday, December 8, 2008
Radiation Treatments
The WW Cross Cancer Institute called and Grandma has an appointment on December 17 for some preparation work. Her first radiation treatment will be on the following morning. My mom will get a printout of the treatment schedule on the 17th. The 20 treatments will be on weekdays only because the radiation department is closed for weekends and holidays. The treatment appointments are not going to be at the same time each day.
Grandma started to have some feeling of indigestion yesterday. It is getting worse and her surgical wound area is also bothering her today. She is now in bed getting some rest. Please pray that she will get better before the radiation treatments start.
Grandma started to have some feeling of indigestion yesterday. It is getting worse and her surgical wound area is also bothering her today. She is now in bed getting some rest. Please pray that she will get better before the radiation treatments start.
Sunday, December 7, 2008
Christmas Party
Today is another long day for us - church in the morning, grocery shopping in the afternoon and a party in the evening.
My mom and I went to my uncle's Universal Dental Lab Christmas party. This is the first year we go without Emily. There were music, singing, dancing, and Santa Claus. I had a good time. My mom asked me several times if I were ready to go home. I responded with a "no" every time.
My mom and I went to my uncle's Universal Dental Lab Christmas party. This is the first year we go without Emily. There were music, singing, dancing, and Santa Claus. I had a good time. My mom asked me several times if I were ready to go home. I responded with a "no" every time.
Silent Night
I am currently fixated with the song "Silent Night". After the song finishes, I search for it to replay it.
Yesterday afternoon, a staff phoned in ill, so my mom had to take me home. I wanted to listen to my CD and refused to go with her. After she got me home, I rushed back to my room. We ran back and forth a few times and eventually my mom unplugged my CD player for me to take with me.
In the evening, we went to visit my mom's friend and had a turkey supper there. It was 11 pm. by the time we arrived home. I was tired, but I didn't want to go upstairs to sleep. My mom succeeded in persuading me to go to bed and I fell asleep fairly soon. My mom took advantage of the quite time to get some work done - work that she planned to do in the afternoon. I woke up before she could go to bed. I was up and down like a yo-yo from my bed, wanting to go downstairs to listen to "Silent Night". My mom kind of debated whether she should bring my CD upstairs to pacify me. She decided not to because she knew that I would be staying up searching for the song repeatedly. She kept hoping that I would give up and go back to sleep. I finally did, but that was more than 2 hours later.
I don't know how much sleep my mom had last night, probably not very much. When she woke up, it was already 8.35 am. She rushed and rushed to get me ready for church. I was such a challenge for my mom. At first, I refused to sleep. Then, I refused to get up.
My mom seldom has headaches, but she is having a tension headache right now.
Yesterday afternoon, a staff phoned in ill, so my mom had to take me home. I wanted to listen to my CD and refused to go with her. After she got me home, I rushed back to my room. We ran back and forth a few times and eventually my mom unplugged my CD player for me to take with me.
In the evening, we went to visit my mom's friend and had a turkey supper there. It was 11 pm. by the time we arrived home. I was tired, but I didn't want to go upstairs to sleep. My mom succeeded in persuading me to go to bed and I fell asleep fairly soon. My mom took advantage of the quite time to get some work done - work that she planned to do in the afternoon. I woke up before she could go to bed. I was up and down like a yo-yo from my bed, wanting to go downstairs to listen to "Silent Night". My mom kind of debated whether she should bring my CD upstairs to pacify me. She decided not to because she knew that I would be staying up searching for the song repeatedly. She kept hoping that I would give up and go back to sleep. I finally did, but that was more than 2 hours later.
I don't know how much sleep my mom had last night, probably not very much. When she woke up, it was already 8.35 am. She rushed and rushed to get me ready for church. I was such a challenge for my mom. At first, I refused to sleep. Then, I refused to get up.
My mom seldom has headaches, but she is having a tension headache right now.
Tuesday, December 2, 2008
Support Circles
My mom has learned about the importance of building a support circle for me some time ago. She thinks about it a lot, but has not taken any action yet. Reaping the benefits of a few not so good nights, she finished reading a book called "We Come Bearing Gifts" by Janet Klees.
The book lists some barriers to creating support circles:
Some of the above are true for my mom, not all. But, the main challenge for my mom is that she is constantly overwhelmed with the affairs at hand that she does not have the energy and time to devote to starting a support circle. There is always one crisis after another that she needs to deal with.
I am lacking in meaningful relationships with others. This makes me very vulnerable. This book describes helping the individual to connect to the community by facilitating the development of friendships as one of the most important responsibilities of the paid support worker. Caregiving and companionship roles are necessary, but are of less importance. The book suggests that paid supporters should evaluate themselves from time to time by asking the following question:
What really strikes a chord for my mom is:
The book lists some barriers to creating support circles:
* reluctance to ask people to become involved - we feel like we are asking a lot of the time any ways and this is just one more time commitment,
* uncertainty with just exactly what we were asking people to do or to get involved in,
* discomfort with taking charge of the group itself, or uncertainty about who should or would do so,
* some previous uncomfortable or unpleasant experiences in a support group,
* not convinced of the value of support groups,
* having trouble keeping the circle energized,
* having trouble hearing everyone's voice - facilitating the conversation well,
* finding a common time that is convenient to all of the busy members,
* having a sufficiently important reason to call people together.
Some of the above are true for my mom, not all. But, the main challenge for my mom is that she is constantly overwhelmed with the affairs at hand that she does not have the energy and time to devote to starting a support circle. There is always one crisis after another that she needs to deal with.
I am lacking in meaningful relationships with others. This makes me very vulnerable. This book describes helping the individual to connect to the community by facilitating the development of friendships as one of the most important responsibilities of the paid support worker. Caregiving and companionship roles are necessary, but are of less importance. The book suggests that paid supporters should evaluate themselves from time to time by asking the following question:
If I had to leave the country next week and not be able to continue to support this person at all. WHAT WILL I HAVE LEFT BEHIND? Will I leave behind only a good memory in his mind of someone who appeared on the scene and was fun to be with for awhile . . . or will I manage to leave behind something more lasting that continues to make an impact on his life for a long time to come (like: connecting him with a new friend, finding and supporting him in a volunteer position where his gifts are welcomed, or figuring out a business where he is truly involved and the central figure?)
What really strikes a chord for my mom is:
As human beings, we get tired. Families, especially those whose sons or daughters with the greatest support requirements, have maintained many hours a week of physical care and support for their children, including often the general running of a second home. In addition, all families are the main coordinators for scheduling, arranging, filling in and guidance of both paid and informal support persons. This is not only physically and emotionally draining, but continually provides food for the ongoing worries about "what happens when I am no longer here?".
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