The Long Goodbye

My father made the statement tonight that this is called the long goodbye and it struck me as such a simple and profound way to describe what is happening to my mother and us. Watching someone die is pretty taxing both emotionally and physically. Watching someone who has no idea that they are dying and yet can still communicate is even harder. We ask her how she is feeling and she tells us that she feels that she is getting better. It tears us up not being able to tell her to let go or to say goodbye. And although Hospice tells you to let them see you cry and to let them know they are dying, I guess it is different when you are a patient with Alzheimer's and even different when the patient with Alzheimer's still has her memory (sorta).

So how is she doing. Well not good which I guess is expected considering our only outcome from this ordeal. She has been in bed for two months now and has not eaten anything in 31 days. Her breathing has become more shallow with a few pauses. most noticeably is the sound of her breathing. It seems she has a lot of fluid in her throat and lungs and no longer has the strength to cough it up. She can speak in whispers unless she gets angry-and then she can talk much louder. She is hard to understand partly because she is so quiet and partly because she cannot recall words. She does not move her legs or body at all and has developed bed sores. I am pretty proud that it is only now that she is getting them and hospice said that they are going to get worse since she has no nutrition to help counteract them. She is so skinny-prob around 74 pounds and her skin is translucent. She has a medical smell about her and her breath smells like a hospital room. Thankfully she is still coherent most of the time (when awake) and I think it is due to the fact that she is on oxi not morphine. Tonight she started with some severe hallucinations and I could not figure out what happened. She started to scream and yell at someone and was reassured when I told her that I was there and would protect her. It was something about someone taking something. I managed to get it back for her and she was happy. She did it a few times out of the blue and then would go back to her vacant stare with her mouth open wide staring at the ceiling. She did talk with me for a few minutes and I even got a smile when I told her that Mackenzie starts kindergarten tomorrow. A weird thing happened to my father today and maybe someone knows what this is. Dad had to change mom and noticed that there was some very light pink jelly like material in her diaper. I did not see it but I am thinking some type of mucus from her bowels? Any thoughts.

This entire process is such a difficult thing to endure. I am not sure if the waiting or trying to figure out what is happening is the worse part or watching someone you love no longer able to do anything but lay there. The entire time I am with her, I think about what could have been and how she would have loved the grandchildren. I think of all the kid's extracurricular activities that she won't share and all the sleepovers that won't happen. I think about the fact that it might be me in that bed and am anxiously waiting for the results of the PSN1 test. Mostly I think of how much I am going to miss her and how much I want to hear her say she loves me. I want to have my mom make me supper and give me a hug. I want to hear her say it will be ok and that she will be there for me. Instead I have to be there for her telling her it is ok and that I am there for her. I rub her hair and bath her, I tell her I love her. She is not dead yet and I already miss her. In the late night hours when no body is up and no one can hear, I let the tears fall. I squeeze my fists and crumble wishing I could reverse this disease and bring back my mother.

Like the song in tangled...Flower gleam and glow, let your power shine Make the clock reverse and bring back what once was mine. Heal what once was hurt, change the fates design save what has been lost and bring back what once was mine. what once was mine. I keep hoping if I sing it long enough, maybe just maybe my mother's body and mind will be restored.

Ok well on a slightly morbid yet funny side of this horrible situation: The other night I was explaining everything to Mackenzie about my mother dying. Her response was...Mommy, when Gigi (my mother) dies, can we have her stuffed like you said they could do to kipper (our pet that she wanted to have stuffed so she could keep it with her). Gotta love kids for finding simple solutions and bringing humor into such sadness....