I wrote this to my mother as a child.

Today I wasn’t sure what I was going to write about. I had that familiar pain inside which told me I had to write something.

Since I’ve been feeling Sonia’s pain, it seemed that this would be the time to continue sharing the story of my recent ordeal during my mother’s hospitalization. I’ve entitled my story “Trying to be Positive.”

That is a perfect title for me. I have been feeling a little overwhelmed with continuing stress in my life.

I may convey a lot of the pain, however, along my life’s journey I have met some wonderful people. They are my heroes and heroines; it gives me so much satisfaction to be able to write about them. I celebrate how blessed I have been to cross paths with kindness that has overflowed onto me.

Lately, I’ve felt much less humorous and I haven’t felt like sharing my daily trials and tribulations. Those trials are continuing, for sure.

Only today my mother called to let me know how uncomfortable her feeding tube has been for her. She is not a “complainer,” and I’ve seen first hand how the annoying tube has eroded her quality of life.

It has been over a month since I “strongly” requested its removal. I’ve spoken with many nurses, doctors, and staff at her facility. As I write this, I begin to feel the slow boil of anger welling up inside of me.

The “daughter bear” fury isn’t helpful for me at this moment. I did call today, and I barely contained my anger. I found out that my mom’s feeding tube is scheduled for removal in two weeks. It’s a shame I had to do that, because the facility should have informed my poor mom. It would have alleviated so much of her anxiety.

I’ve noticed how the elderly are treated like ignorant children. Often my parents receive little notice of an appointment. Usually they’re told the day before or that same morning. It’s as if planning and anticipation of an appointment is insignificant when you’re old!

I do realize how difficult it is to change this system, especially when I consider that their facility is significantly better than most.

Lately, my father hasn’t looked well at all. Today, I asked him if he could go to a meeting tomorrow morning regarding my mother’s care.

My father said, “I’m out of the picture!” He explained that he couldn’t deal with anything related to my mother’s care anymore. He was honest and direct about it, but he had a lot of sadness. He hates to add to my burdens.

So tomorrow I will attend a meeting regarding my mother’s care at her facility. There is no one else that would do this for my mother. There’s no point for me to ask either of my brothers to take off work. Maybe I will someday.

College Graduation day with my mom.

A DAUGHTER’S LOVE – PART 2

Dec. 3, 2009

We don’t know if she still has pneumonia. Being on a respirator, cannot be helpful. However, she was not oxygen deprived and I’m trying to remain hopeful that she can recover. Tomorrow, if she’s able to come off the respirator – that would be a huge hurdle. I’ll continue to keep you posted.

December 4, 2009

I called this morning at 5:30 a.m. and spoke with mom’s nurse. The process of weaning is still on going.

So far, I was told that mom is doing “okay.” She is off sedation, and they are going to check her blood gas to determine how things are going. The tube won’t be removed until they’re certain.

December 4, 2009

Boy I hate drama! I’ve been living practically all week at the hospital, and I’m looking forward to the brief break tennis offers. Especially to be surrounded by friends who understand and care.

I called starting at 5:30 (I hardly slept last night). The process is ongoing, and my mom is breathing with the tube still in. A doctor will evaluate things, and make a decision in a few hours.

I hope my problems won’t interfere with everyone else’s game on the tennis court, but honestly, it will be fine to just play a good, hard game – I don’t feel chatty.

December 5, 2009

A procedure was done this morning to have a scope put down my mom’s throat, and have the breathing tube removed.

The tube was put back, but a smaller one was used. It was determined that my mom is fighting pneumonia. She is being kept heavily sedated, and is not uncomfortable. Obviously, she has a tough fight ahead, and I appreciate your love and support. I will continue to keep you posted.

They are keeping her fully sedated with the same drug that Michael Jackson used.

December 6, 2009

I spoke to mom’s nurse last night, and she was exceptional. The nurse also said mom’s vocal cords were not swollen, just that there was a lot of pus. Mom is getting three antibiotics, which supposedly will cover the bacteria involved.

Mom has been having low-grade fever, which they are not treating with Tylenol unless it goes over 100.5. I will discuss this with her doctor, because she should be made comfortable. When you’re older, even a low-grade fever still hurts.

Advocacy never ends. I feel empowered when I can make a difference.

Still not sure how things will play out, but it’s still possible my mom might improve.

December 7, 2009

I did feel better in the morning.

The doctors seem to be optimistic, even though I realize that I either want this to not work out or for her to make a total recovery. It’s that grey area that will be so, so hard for me. It could be years and months of torture – for her and for me.

There I go . . . I’m going to stop that. Yesterday, I went to a baby shower. Although I was with friends, I was in my bubble. I smiled, and I ate so much bad food. I realized what I was doing, but didn’t stop. Of course, it made me sick. I haven’t binged like that in a long time. I feel sad that I am not treating myself too well.

Okay, I’ve got to run. I’ll be in touch soon.

December 7, 2009

My mom is also receiving nutrition through an IG tube (in her nose) to keep her strength up. Because she is sedated, I don’t think she is in any pain.

The doctors, in general, seem to be fairly optimistic that shecan recover.

Her airway is not swollen, and the pneumonia is being treated. I understand that patience is required to wean her off the oxygen tube. It is a delicate and slow process. Therefore, I probably won’t have any updates for a while.

December 7, 2009

My mom received a gamma-globulin treatment today.

Her culture taken for pneumonia did not come back with any serious bacteria. This is also good news.

Tomorrow morning, my mom will be weaned off the respirator and she will be closely monitored. Up until now, she’s been heavily sedated. For this process, she will be awake – it isn’t comfortable either. Let’s cross our fingers that she can get off the respirator.

My dad is very lost, and I bring him over to my home in the evening to keep him busy.  He is very frail.  If my mom recovers, he will be very happy.

December 8, 2009

I wish it were better. Just got off the phone with the nurse.

When they tried to wean mom off the respirator, her blood pressure and heart rate went up. So the process was halted. She’s back on sedation.

I appreciate your support. It is a roller coaster ride, and I’m exhausted. However, my mom is not in pain. I heard she was pretty agitated this morning when they took off the sedation. Thank god I didn’t see that. Anyway, it may be a long road, so I have to pace myself.

One of my many worries is that she will recover (with a tracheotomy) and won’t have her faculties or will have further loss of her eyesight and/or hearing. She’s a trouper, but I would hate to see her like that.

Anyway, the doctors are still optimistic, so I am trying to be positive.

My mom and her physical therapist. She has made all the difference.

Yesterday

The care meeting at my mom’s nursing facility was very reminiscent of an IEP (school meeting). What was most striking for me was the fact that my mom had an advocate. Her physical therapist was sitting next to her. This PT was definitely speaking loudly for anything that would benefit my mother. You could see how much she cared.

My mom’s eyes were dull and tired. She was very anxious.

The many details of her care were covered during the meeting. At the very end, I brought up an issue where my mom felt she was ignored and kept waiting for a long time in the lobby. This was because it was dangerous for her to be left alone in her room. She has had a few minor falls, due to her impulsivity.

When the meeting was over my mom said, “I feel sad and depressed about the meeting.” I had to agree with her.

I told her, “Mom, I know how hard it was to share your feelings. However, this way it can make something change. It’s far better to let them know how you feel, and give them a chance to fix it.”

I wanted to thank my mom’s physical therapist, so we walked over to the PT room. As soon as her PT saw her, she came running over attentively.

She pushed on my mom’s shoulder. “Shirley, down – put your shoulder down! You must remember the proper position!” My mother lowered her shoulder slowly. Then my mother told me, “She’s so strict with me sometimes!”

This physical therapist was responsible for my mother’s newfound ability to go out to dinner with me. Last Sunday, my mom was able to stand up from her wheelchair and confidently slide into my car. It was because this therapist has been working so hard with her!

I asked her PT if I could take a picture of them together. She obliged. I took two pictures. After each picture, she leaned over and kissed my mother. I wanted to cry, it was so beautiful.

A few minutes later, a new caregiver that was recommended to me came to meet my mother and I. She was warm and she was kind. I kept thinking how much it would have helped me if I’d had her assistance during the ordeal I went through in December. I finally have seen the light.

She will start next week.

8:30 p.m.

I spoke with my mother – she called. I told her I was busy writing, and completing online traffic school, all at the same time!

I told my mom how I completed an illustration assignment this morning, too.

My mother wanted to hear about my kids. Her love and concern for her grandchildren never ends.

After reading my emails above, I was very appreciative that she was still with me.

My mother ended the call with, “Honey, everyone has been so nice to me today! This nice man from the facility came over to walk with me. I can use a walker even better now! Are you sure I still need a caregiver? This man didn’t even charge me anything.”

I got off the phone. I was feeling positive again.

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