To get my mom's jaw to unlock, they had to use a lot of sedation which isn't great for a person with ALS. Sedatives can decrease respirations and increase possibilities of complications such as pneumonia.
They attempted to call me but unfortunately that was the night Dave and I decided to distract ourselves and go to a movie. We never made it to a movie after all. When I got home, I got a message from an emergency room doctor to call them. I called after all the trauma had already been completed. Her jaw locked open again that same night but they were able to get it back in place.
The Occupational therapist had to create a nylon mask to hold her mouth closed. My mom hated wearing it because it was quite hot on her face.
After my mom went into hospital I called my brother Chris. I mentioned to him that if he wanted to come and see my mom to say goodbye that he should come soon. I really could not predict how long it would be but I wanted him to have the opportunity to see her one last time to say goodbye. He chose not to come but I think he wanted to remember my mom the way she was rather than seeing her in the hospital.
Now, we were just waiting for the home care to be set up to bring her home. One Saturday we had a pass for her to come home. We had a wheelchair to use to transfer her from the car to the house. We watched a movie but after that was over she just wanted me to talk to her. All in all, at this point, she was doing pretty well.
On return to the hospital there were times she seemed a little confused. I was wondering if the confusion was related to the decrease in oxygen getting to her brain. Whenever I was working I would check in on her and she always seemed awake. I was really afraid that she was having pain but she wasn't able to tell us.
Friday morning at the end of my nightshift, she was pulling at her feeding tube and the nurse mentioned to me that she had vomited. I was wondering if she was really telling us that she didn't want the tube feeding anymore. At the end of life, there is a huge decrease in appetite and so I was really questioning if we should stop the feedings. I called the woman at the ALS society and I talked to her about the feeding tube and asked her if we should stop it. I then called the hospital and requested it be stopped and that the focus would be on comfort.
Unfortunately with everything going on, we still didn't have her will signed. We attempted to have that signed but it was too difficult to get her to sign it. My mom really didn't have a complicated estate anyways and my brother and I planned to split things evenly. Thankfully no reason to fight.
At the same time, our friends were in the hospital having a baby. Wow what a mixture of emotions...one floor happiness and new life and the next floor down the end of life.
The realization that the end was near was revealed to me too late in the day so I had to go in for my nightshift. In retrospect I think that was best because I was at the same hospital she was in just four floors above her. It allowed me to have more time with her because I had been at the hospital.
I called down to the unit to check on her in the middle of the night. The nurse told me that she was resting but when I went down to see her, her breathing was faster and her eyes were open. It broke my heart and it made me incredibly angry at the nurse I had talked to just a couple of hours before.
Nurses, do not lie to your patient's family so they can have a false sense of comfort for their loved ones. I immediately asked for morphine for her and the nurse seemed dumbfounded. He may as well have asked why she needed morphine?
I went to see her at the end of my shift and then went home to bed. I told her I would be back. My eyes were opened to her suffering and I realized that there wasn't anymore quality to her life. She was a strong independent woman much of her life and her independence was gone.
I returned about eight hours later. I stayed with her for a couple of hours. The very next day was mother's day. I selfishly wanted to have her for mother's day but knew that the best mother's day present was for her to go.
Prior to leaving....I gave her permission to let go. I told her that she had suffered enough and that it was okay to go. I told her that I would be back the next day but that she could go and be with Jesus. Why didn't I pray with her?
Two hours later she died! I truly believe I helped release her. I told her it was okay and I meant it. It had only been two weeks since she had been admitted into the hospital for her feeding to be changed. I had prayed all along that she would be great but when she started to decline that she would go quickly and not suffer. Wow! That was pretty quick. Be careful what you pray for!