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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.
 
God's comfort and peace to your Dear Mom, to you and to her loved ones. Thank you for loving her and taking care of her these past two years. I'll have you and your Mom in my prayers tonight.
Love
 
Thank you for sharing your feeling, your mother must be very proud of you. My thoughts are with you and your family.
 
Many prayers of comfort, peace and blessing going out for you, your mother and the rest of your family tonight.
 
Almondjoy,

The Pals and Cals learn so much about life together, we are so blessed to have each other.

Thoughts and prayers to you and your family.

Mounds
 
Dear AlmondJoy, my heart goes out to you and your family. God bless!
 
Autumn, for one so young, the grace you have shown in caring for your mother is phenomenal.

Although you may feel you need to be by her side when it is her time to pass, please do not feel guilty if she chooses otherwise.

Love to you and your family.
 
You're an amazing daughter, and a testament to your parents... it must be agonizing in this "waiting" period. May you all find comfort and peace.
 
Praying for you and the family as you go through this battle with your Mom. I know it is extremely difficult to go through all this. I lost my sister in December 2011. Please know in you heart of hearts that you are doing for your Mom all that you can. Please don't kick yourself if you are not in the room with her when she goes. A lot of people do this. You can have peace knowing that you have been there caring for her all this time..and know how very proud your Mom is of you. If you are not in the room when she passes, it is because it is meant to be that way. Besides, she won't be alone..Jesus will be holding her hand and taking her home. I was at work when my sister passed away. They called me, but she had just passed away shortly before I arrived. God knew it would be too hard on me to be there when she passed. Loving me as He does, the person holding her hand when she went was the hospice volunteer. I got there and I kissed her forehead and told her through my tears that her fight is over and that it is Jesus's turn to take care of you now.
 
Your mother is very lucky to have you .I thinl you both will be at peace,especially know how well you cared for her.My heart breaks for you as my journey into the final days with my husband is yet to come.God bless you.
 
So sorry for your pain. You are all in my thoughts!
 
That post was absolutely beautiful. When my mother in law passed we sat in the hospital with her for a week. We finally left the hospital to go and get showers and she left us. We figured she was waiting for us to leave. Prayers are with you.
 
You have been a wonderful child and now caregiver for your mother. You were a blessing to her from the day you were born.

Continue your education and know that she will be proud of you whatever you do in your life.

I hope I can approach the end of my husband's journey with the same dignity as you have afforded your mother.
 
What an amazing person you are. Such a wonderful daughter and sister. Your family is so fortunate to have you in so many ways. And, from what you've written, you sound so proud of your mum and your family as they are of you. You all sound like a great "team" now and always. Thank you for sharing your thoughts at this very unfortunate time. Sending you and your family warm thoughts. Yasmin
 
I am so sorry for your pain hon.

Know that you have been an amazing caregiver and daughter, as well as a great example and a great big sister to your younger siblings. Be proud of the amazing job you have done and have been such a great support to your Mom.

I totally understand how surprised at how quickly it changed. I took my sweetheart to a Dierks Bentley concert 2 weeks before he passed. The Monday, before he passed (on Sunday) was Halloween and he was a bit tired to go out trick or treating, and so I dressed him in a football jersery and we took pics of him and I with the kids, I took pics of the kids and videos of the kids trick or treating and then shared them with him when we got back. That Thursday he started asking for drugs on the hour, and Friday they were telling me he had a mere hours... he passed on our Daughter's first birthday (that Sunday). So within 2 weeks, we went from going out on a date to a concert, to him dieing. definately is not easy hon.

Just wanted I understand hon, and am sorry you are hurting and for you pain.

You and your family are in my thoughts.

*hugs* and much love,

~ Becca
 
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