almondjoy
Member
- Joined
- Feb 11, 2012
- Messages
- 10
- Diagnosis
- 09/2009
- Country
- US
- State
- Ohio
- City
- Bellevue
My mom is in her final days and quite possibly her final hours now. She has not eaten anything in 2 weeks and 4 days, stopped drinking 5 days ago, and since then has only had a few bites of crushed ice each day. She has all of the typical signs of end of life - the darkened urine, dark blotches on extremities, shallow/difficulty breathing, increased sleep and lack of interest in what is going on around her. She has chosen not to have oxygen but started taking adavan several days ago to help with air hunger and allow her to relax enough to sleep. At this point, she can occasionally summon the energy to smile or open her eyes and acknowledge one of her loved ones, but most of the time, she keeps her eyes closed and just responds to our talking by raising or lowering her eye brows, the signals we have worked out for yes and no since she can no longer talk.
I have been her fulltime caregiver since her diagnosis over two years ago, and the speed with which she began to decline three weeks ago really caught me and the rest of our family off guard. She went from sitting in a wheelchair, eating, laughing, talking, playing games and sharing life with us, to laying bed, unable to talk, unable to summon the energy to even open her eyes, just wasting away. It caught us off guard because up until now, her progression has been very slow. Now though we have prepared ourselves for her to pass and have said our goodbyes. All of her brothers and sisters came to see her last week and my brothers and sisters have all come also and had a chance to say goodbye. My dad is sad but at peace about her approaching passing. I have a little brother and sister who are 16 and 12 and they are here at home with mom and I, and we are having a hard time with this end-of-life vigil also. The Hopsice nurses who came out at the beginning of the week at my request to check her vitals said that her oxygen is very low and her blood pressure will no longer register. Now I guess it is just a waiting game, but this part is just agonizing. I am so thankful that she is not in great discomfort and seems to be comfortable as long as she is on the adavan, but for over a week now, they have been saying that she could go at any time and the stress of waiting but not knowing is exhausting. I have traveled this 2 years journey with her through ALS as her only caregiver and although some people feel that I have given up a lot to do it, it has been my pleasure because my mom is truely amazing! If i am ever blessed with a family, I pray that I can inspire and teach them as much as she has inspired and taught me. I know that it is her desire to go home to heaven, because the last days that she could talk (almost a week ago now) she asked her family and all of her visitors to pray that God would take her home soon. Now I feel that she could go at any minute and as i sit here and watch her chest move in tiny breaths that are barely visible, I am afraid to even leave the room or lay down and sleep because I really want and feel that I need to be here for her at the end, and also to have closure for myself. I moved home after college to care for her and my younger brother and sister and before moving on after she passes, I want to know that I was there for her at the end. Maybe that is a selfish thing on my part...I hope not. I know that she is ready to go and I just want for her battle with this awful disease to be over and to have peace that i was with her at the end. When she passes, our tears will only be for our loss because i know she will be happy with her Lord and able to walk and talk and eat once again.
I guess that is all I need to say. I know there is not much that anyone can do, but I appreciate the chance to voice my feelings to people who i know understand. I only found this site about 3 weeks ago, but I have appreciated reading what many of you have written. God bless each of you as your fight your own fight against this terrible disease.
I have been her fulltime caregiver since her diagnosis over two years ago, and the speed with which she began to decline three weeks ago really caught me and the rest of our family off guard. She went from sitting in a wheelchair, eating, laughing, talking, playing games and sharing life with us, to laying bed, unable to talk, unable to summon the energy to even open her eyes, just wasting away. It caught us off guard because up until now, her progression has been very slow. Now though we have prepared ourselves for her to pass and have said our goodbyes. All of her brothers and sisters came to see her last week and my brothers and sisters have all come also and had a chance to say goodbye. My dad is sad but at peace about her approaching passing. I have a little brother and sister who are 16 and 12 and they are here at home with mom and I, and we are having a hard time with this end-of-life vigil also. The Hopsice nurses who came out at the beginning of the week at my request to check her vitals said that her oxygen is very low and her blood pressure will no longer register. Now I guess it is just a waiting game, but this part is just agonizing. I am so thankful that she is not in great discomfort and seems to be comfortable as long as she is on the adavan, but for over a week now, they have been saying that she could go at any time and the stress of waiting but not knowing is exhausting. I have traveled this 2 years journey with her through ALS as her only caregiver and although some people feel that I have given up a lot to do it, it has been my pleasure because my mom is truely amazing! If i am ever blessed with a family, I pray that I can inspire and teach them as much as she has inspired and taught me. I know that it is her desire to go home to heaven, because the last days that she could talk (almost a week ago now) she asked her family and all of her visitors to pray that God would take her home soon. Now I feel that she could go at any minute and as i sit here and watch her chest move in tiny breaths that are barely visible, I am afraid to even leave the room or lay down and sleep because I really want and feel that I need to be here for her at the end, and also to have closure for myself. I moved home after college to care for her and my younger brother and sister and before moving on after she passes, I want to know that I was there for her at the end. Maybe that is a selfish thing on my part...I hope not. I know that she is ready to go and I just want for her battle with this awful disease to be over and to have peace that i was with her at the end. When she passes, our tears will only be for our loss because i know she will be happy with her Lord and able to walk and talk and eat once again.
I guess that is all I need to say. I know there is not much that anyone can do, but I appreciate the chance to voice my feelings to people who i know understand. I only found this site about 3 weeks ago, but I have appreciated reading what many of you have written. God bless each of you as your fight your own fight against this terrible disease.