27 | November | 2013

Tomorrow is Thanksgiving and today, this very minute I am thankful for being here at home and not in a hospital with a heart attack or stroke. Today has not been a fun day. Al woke up with pains.

Pains everywhere from his feet to his neck. He struggled with breathing. Even when the Hospice nurse came today Al showed signs of breathing difficulties and pain. I don’t understand. I just don’t understand how they brush it off.

As his sister it was hard not to get overly stressed. He went through periods of burning all over he said to heavy sweating, to not eating. The helper was here today and she not only helped Al she helped keep me calm.

I got dizzy so much. My sugars dropped. I ate to bring the numbers back up and started to feel better than Al would start into a whole episode of pain all over. His head hangs so far down on his chest with all his skin hanging there it makes it so difficult to hear and understand him. His legs are contracting, his feet are contracting. His one arm won’t work anymore. It is just hard for me to watch.

This afternoon he started sounding like he was aspirating some. It looked like his mouth was drooping and he was drooling real bad. Breathing was hard. I finally called Hospice back and asked for a nurse to come. The charge nurse said alright but a few minutes later she called me back.

She stated the nurse that had been here three hours ago said when she left Al was nice and calm, that maybe I just wanted him to go to the Hospice house. I exploded over the phone.

That conversation of the Hospice house had been brought up with the nurse earlier today that was here and I made it perfectly clear that I wanted Al home for Thanksgiving. I was mad that this nurse of Al’s would imply this after our conversation.

I started yelling at the charge nurse. I don’t know if Al will be discharged from this Hospice or not for my yelling at her but stress, worry and crazy words from her made me tell her about MSA and how it can change hour to hour.

She said she would document that I called and the symptoms I had told her. Al was given higher doses of pain medications and he finally fell asleep.

I keep asking these professionals, what is happening? what is happening? I don’t think anyone knows. I think they suspect that I will just go with the flow. Maybe a part of them is right, he has this disease that is incurable and there is no way to help any longer except pain medications, but does that mean I understand?

I am scared when Al gets like this. I can’t help it. Burning all over, pain levels that are higher than a six out of ten. Not eating, tears, crimson face, sounding like he’s aspirating?

The helper is going to come tomorrow to get Al up and see how he is. I told her she then needs to go home and be with her own family for the holiday. I am tired, and am thankful that I got so much of the food preparation done for tomorrow.

I am thankful for being here and Al being here with me, but I am scared, I can’t help it. I feel like I am walking in a dark room feeling for familiar things but there aren’t any, and when I don’t have Hospice nurses to count on, I feel totally alone and lost.