My mom helped me cope with the challenges of my cardiac child, Jason. Her positive energy and love buoyed me.

In December of last year, my mom was on a respirator for two months. During that time, I wrote frequent, email updates regarding my mom’s condition. I received back so much love and support that continued writing to my friends after she recovered. This is what inspired me to begin my blog! My mother’s birthday is approaching. I have written a lot of stories, but very little about the ordeal with my mother. I cannot yet write about the experience, but my email messages can tell part of the story.December 17, 2009

It’s probably the hardest thing to love someone, and bear their illness. I can hardly imagine how it is done over a longer period of time. I know my mom wouldn’t want me to fall apart, and I can’t afford to.

It does help to reach out. Email is definitely helpful for me to stay connected.

I am so exhausted from everything going on. I feel so vulnerable, even sharing with you how hard this has been and the mistakes I’ve made.

I want to go and visit my mom again, but I know I have to conserve my energy. Her disposition has been so sweet, but it is obvious that she is uncomfortable. She keeps trying to mouth and talk to me, but I can’t figure out most of what she is saying. It is very, very hard.

All day long she just looks at the ceiling; she cannot see or hear the TV at all. I am going to try and bring her some headphones and music, but when I’m not there, I don’t know if the nurses will play it for her.

December 18, 2009

I just spoke with mom’s night nurse. My mom was very, very feisty last night. She wants to be done already with all the tubes and all the discomfort!

Mom chewed off her mitten three times. Aside from pulling out the urinary catheter yesterday, she pulled out the NG tube in her nose for a second time. It is a serious problem getting it back in.

Mom almost pulled out the trachea tube also. I feel so helpless. I know when I’ve been visiting her, she’s been all smiles – I can’t bear the thought as this goes on, of seeing her depressed and unhappy.

I asked about the vent settings, and the nurse said they were at the lowest possible setting. I wonder at what point she will be taken off? I sure wish it could be soon.

Today was rough. My mom’s teeth were clenched in a grimace, and her eyes had a far-away look. I am really trying to prepare myself.

December 19, 2009

Thanks for your warm message. I know how it is with “the hole.” I still miss my five-year-old son that died 17 years ago. I am going through such a rough time with my mom right now. It’s hard to be positive. She’s 84, and has a long climb just to get off a ventilator and eat again.

The last two days she has not been comfortable, and her progress has slowed.

The doctors have no answers as to when my mom will be able to get off the ventilator. This morning when she was weaned, she lasted until about noon. I visited her, and she was visibly exhausted. She nodded to indicate she could hear me, but would not open her eyes.

In the evening, I went back a second time to visit with my father. My mom was in terrible pain, she can’t moan – but she was grimacing and pointing to her stomach (which is hugely bloated for some reason).

I ended up going to the charge nurse, the doctor was paged, and my mom was able to get some morphine. I didn’t leave until I saw her brows relax. My dad tried to rush me to leave and he told me not to bother the nurses. That made me crazy! My dad has become difficult, and is very critical and irritable with me. He is having a lot of trouble coping.

I have let her know how her friends and family are all thinking and praying for her.

December 20, 2009

My mom was very uncomfortable this morning; I think her back has been hurting her. She was literally sliding off her bed all morning. Because of this, her blood pressure was up. It was disappointing to hear that she was not well enough to be weaned at all from the ventilator today.

Although she wasn’t able to make breathing progress today, I was there when a physical therapist came to work with her. My mom still has a lot of motivation and will to get better. Gritting her teeth, and bearing the pain – she was raised to sitting position, lifted to stand, and then placed in a chair. She was able to sit for about ten minutes, and smiled through her pain

She’s still not getting any “formula” (food), until her stomach issue is resolved. A gastro doctor ordered some medication for her, to see if it improves her stomach situation. Some new antibiotics were ordered today also.

I’m going back to the hospital to bring my dad tonight.

December 21, 2009

I took dad with me to see mom, tonight. It was a tough visit. She had been given morphine; she didn’t open her eyes. However, she was visibly in pain still – just unable to move much. I untied her hand, and she showed me that her back was hurting, and also the back of her head. I think the trach was too tight.

I asked the nurse if a cold pack could be put on her back. The nurse was not helpful, and was too busy to talk to me. I went to the supervisor, and I was told the doctor would have to be called in order to have anything cold put on her. I told them to make the call!

Finally, mom looked slightly more comfortable when I left – she was enjoying listening to the music.

I am glad I helped her tonight – I can only imagine what goes on when I’m not there. The day nurse mentioned my mom’s agitation is sometimes about her not realizing where she is and having a panic attack. I hope the morphine isn’t messing with her mind.

I wish it weren’t so up and down.

This was taken ten years ago, on my 40th birthday. I am much happier today, than I was when this picture was taken.

December 22, 2009

It was a very, very difficult morning. I held her hand, and she was shaking.  It was and still is hard for me not to cry.  The pulmonologist came by, and he wasn’t happy with her heart rate – a lot of irregularity going on. I was scared. My mom was shaking a bit, still aware, but obviously discouraged and in pain – she kept touching her chest; I could feel her heart beating strangely. I was able to talk to her for a couple of hours, and when I left she gave me a slight smile.

Perhaps she is weak from not having nutrition through the tube for three days. Supposedly, the stomach doctor will check her again today – she is getting some stomach meds. Maybe her electrolytes are off, and that is what is affecting her heart.

She knows exactly what is happening, and can hear me speak to her. I get very sad and frustrated that she can’t talk to me; often she tries, and I don’t know what she’s trying to tell me.

I remember seeing the movie, “The Diving Bell and the Butterfly.” I just always let her know that she’ll be able to talk soon, once she’s strong enough to breathe on her on. Part of me thinks that she is losing this battle, and it may be soon.

The nurse told me that some patients never get of the ventilator. They go back to the nursing home on a vent and with the feeding tube. They can never go anywhere. I hate to think of that scenario for my mom!

December 23, 2009

This morning was a mixed bag. To be honest, it didn’t feel too great when I saw mom this morning. She was totally drugged; unable to talk or open her eyes. I was very upset, because yesterday she was smiling and aware.

I sought out the nurse, and charge nurse. They told me it was necessary to give mom morphine because she was writhing in the bed and “very uncomfortable.”

So during my two-hour visit, my mom was expressionless and miserable and unable to open her eyes. I think her back was really bothering her. Her stomach was bloated, but the feeding is continuing. So far, she seems to be tolerating it, as far as they are concerned.

December 25, 2009

I’m very exhausted – it’s about 1:30. I’m not sure if I’ll go back later in the afternoon or evening. I know my mom really needs me there.

I was there all morning – my friend, Janis, visited with me most of the time. It is remarkably sad, but in the room across from us – the woman is dying very slowly. Janis is a friend of the woman’s daughter, so she actually could visit both of us at the same time! Each day I am hoping it will be over for the other daughter, but it’s been continuing. I am so lucky that my mom is aware of my presence.

She is still on the partial ventilator setting, which is good. Janis was there, and my mom did try to muster a smile. She got her hair shampooed, some ice was put on her back, but even that didn’t help much. She cannot get comfortable, and is gagging a lot.

I left her with music on, but noticed a bedsore on her ankle that was bleeding. That was the first time I had ever seen one. It was hard to even find her nurse, because during holidays the staff is minimal. Her gastro doctor came, and I signed the consent forms for the gastric tube procedure, which will be scheduled sometime on Monday or Tuesday.

Being in the hospital so much is like a different world; I’ve been there before, and I wish I could escape.

My mother, my best friend.

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