Hi, I am new to this board and to ALS, my 74 year old mother was diagnosed in November 2011 after becoming 90% paralzyed over the course of 5months. It is now December and she is in a nursing home under the care of hospice. She is on oxygen and can only communicate by nodding her head. She is on morphine and an anxiety drug. The breathing is tough, but my question is how long can this go on? It is so painful to watch her struggling and not be able to help her - she can't talk to us although she knows we are there. We have to spoon feed tiny drops of water to her and it is breaking my heart. Any insight would be wonderful as we really had no time to adjust to the diagnosis when she started to spiral downhill so rapidly. It's Tuesday and only Saturday she was sitting up in the wheelchair sipping soup through a straw and laughing with the family - 3 days later and she's near death. This disease sucks!
I am sorry for what you have been going through. It is heartbreaking to see those we love suffer so much. The one thing we can remember is that sometimes our presence and love is the most we can offer. You are right.. this disease sucks, and right now we don't know enough to change the outcome.. I guess it is like most cancer was 40 years ago. My husband was only 40 when he was diagnosed...I think age does come into play, because he lived with als for nearly 5 years...which is a long time to live with als. He took no medication for treatment and he ended up with respiratory failure.. he died of pneumonia about 6 hours after I took him to the hospital. It was strange.. after all those years of living with it and and fighting it.. 3 days before he died he was still going up and down two flights of stairs.. and he walked from the car to the ER and got up from the wheelchair and into the bed at the hospital the night he died. It was very sudden.. and after all that time myself and my kids were still not ready for it. I know families feel alone.. I know often we feel helpless, like no one knows how we feel. I know at least, I felt that way. I wish to everyone out there who is reading this that I could offer a real hug.. but this is all I can do. .. post on here.. so although technology has its limitations, it also brings people together in "spirit" to lend each other comfort and support to one another. Behind each of our postings is a real person who has gone through or is currently experiencing real sorrow and or fear.. so although it feels like ALS take everything, I learned more about the depths of love than I ever could of, simply because I had no choice..
The Following User Says Thank You to Jenny1267 For This Useful Post: mth629 (02-08-2012)
mth629 I am sorry about your mother's diagnosis. Last week after many months of wondering what was wrong with my mother she was diagnosed with ALS. She is 81 years old and at this time weighs approx 70 pounds having lost over 20 since June when we first noticed symptoms. We have her in her home under the care of hospice. I know that her doctor does not think she has more than 6 months and at her current weight I wonder if she will make it more than 2 but hospice says they cannot really tell us at time. We are hoping to hire nursing care in her home. mth629, is your mother still living? We are probably going through similar issues at this time. It is so stressful and frustrating to feel like every day something could happen.
Sadly (or thankfully) I still can't decide which, my mom passed away right before Christmas. I remember watching her final days and realizing that she would no longer be a prisoner but would be going home to her permanent home. It is such a horrible disease and my prayers are with you and your mother. My mom was put on hospice the Saturday before Christmas and expired the next Wednesday - her suffering was very short lived. Prayers and blessings to you and yours.
I am glad your mother's suffering was short and I understand what you mean when you say " sadly or thankfully". It is a double edged sword as you hate losing your parent but you do not want them to suffer especially when there is no hope. Please accept my sympathies on the loss of your mother.
i am so sorry about your mom-i feel for you and your family- i was diagnosed with als about 6 months ago-- my husband doesnot want me to consider a nursing home when the time comes-but i donot want this burden on my family- having your mom in a nursing home must be hard on you- but she is getting the best care that can be given at this time- god bless you
It has been almost 2 months since my mom's diagnosis. She was in late stage at the time of her diagnosis and the past few weeks have been very difficult. Her weight had dropped into the low 60's and her frame is now skeletal. She has 2 falls in recent weeks but thankfully has not broken anything. Her current calorie intake per day is under 600 and most of that is due to drinking Ensure or Boost. I am living with her and at night the sound of her breathing is terrible. It is almost impossible for her to have a conversation so now we relay on either her writing things or pointing at what she needs. I look at her and wonder how long this disease will keep her suffering and then feel guilty for hoping she passes soon. There is no quality of life and I only keep hearing it will continue to get worse.