Sure, I know everyone's ALS path is different and yet, eventually, the end will be somewhat the same. The decisions we face, the guilt, frustration and exhaustion we feel, the extreme sense of duty and love that grows each day - these are the same although might be expressed in different ways.
Do I stay subscribed to these groups? Do I continue attending support groups? I think yes. As hard as it is to read, to hear, it's good to know there are folks out there who've been through this. That helps.
Here is an excerpt of just one of the messages posted on just one of the groups I subscribe to.
Original post from a woman who took care of her dad:
It's been two weeks since my dad passed away from ALS. I stopped working to be his caregiver for the last two years. I feel completely lost. Has anyone out there had to take their loved one off of the ventilator? The guilt has become overwhelming but he no longer wanted the trach or life support.
Each ** paragraph is just one person's reply:
** We are at one year today since losing my brother. My sister in law was at his side. They had made decisions and she stuck to his wishes. She's one of the strongest people I know.
** So sorry for ur loss, I lost my mother in 2011 after her battle with ALS, as the child/caregiver to my mother when she passed I too was full of guilt, wondering what I could have done more of, or how could I have supported her more, especially since she passed away just half hour after I left her, I focus on the fact that she is no longer suffering, and that she is at peace now... Time doesn't heal the wounds any, however learning to live again does... My mother choose not to have any life sustaining measures taken, so we honored her wish, which is what u done as well. My prayers are with u!! Hugs from ur ALS family!
** What I have learned doing hospice work, is abide by the patients wishes and never doubt yourself or your actions. I now have to do this with my husband who is 49 and has a hard time talking, swallowing and at times chokes.
** Yes my dad was on the vent. The last week was so horrible. We were suctioning nothing but blood from his lungs. He was starting to become out of it mentally. That Friday he was completely gone mentally. He would go through all of the facial emotions but would never focus on us. It was like he was seeing right through us. When we would walk by and the lighting in the room would change it would somewhat get his attention but he still wasn't there. He was grinding his meet so bad. That evening we called his doctor to come over. He asked my dad a fee questions to which he answered yes to even though he should have answered no to one or 2. We went out of the room and decided to give him pain meds to make him comfy. Then added in high doses of Ativan to calm him and slow his breathing. Once he was calm and pretty much sleeping with his eyes open, they began to turn off his oxygen and turn down the vent. The entire time this was happening it took all I had not to yell stop. But I knew it my heart that he would pass very soon and would suffer. Once the vent got to a certain point it was switched to automatic mode and within a certain amount of time, I don't remember exactly, it slowed his breathing until it shut off. He was no long able to breathe on his own, the vent was keeping him alive. He passed away peacefully with his family surrounding him may 10, 2014 at the age of 51.
** You gave him peace, my sister had to do it for my mom and sister.
She feels like you, I feel like she was an angel. I hope that she would do it for me as well.
** Hi, I'm so sorry got your loss. I was my mom's caregiver and it is very natural to feel guilty. My mom didn't want any medical assistance so not being able to help with a ventilator was excruciating but I wanted to honor her wishes. I also left my job to take care of my mom. I spent 2 years after mom left us to write and write and write. It helped my mourn and heal.
** My husband was not trached but I have guilt for other things...the 'sins' of a caregiver are overwhelming... Trying to keep your loved one comfortable as they die caused me enuf guilt to last 3 lifetimes... Why him and not me?!?! And endless other questions... 4+ years later all I can say is we do the best we can as caregivers and that is all there is...no right, no wrong, just our best...
** My.husband refused artificial breathing.
He died last January.
Diagnosed 4 years ago.
** I had to take my husband of 30 yrs off, it has been 3 yrs, and yes I still live with the guilt
** I think as caregivers we always say why them and not me. I think that all the time she had more to offer this world then myself. My wife choose to not even get feeding tube. I feel guilt and thought she didnt want to stay alive cause she didnt want to be with me. Women are so much stronger then men are i believe when it comes to death but my wife had so much faith. Had hospice nurse and tell me i should go tell her its okay to leave. I feel guilty cause i couldn't do that i felt like i was giving up on her. This ALS is so nasty to watch it suck the life out of someone like it does. When they told my wife i didnt believe it thought something like cancer we could fight it together i kept looking for it to be something else i was in denial the home time. been over ten years and holidays seem to get worse every year. I pray all the time for my wife to come to me in dreams and nothing. Really stinks just hope i meet her in heaven someday.
** My father was wide awake during the night in which he yelled and cried begging for someone to lift him out of bed to walk. Just sad.
** Sorry for your loss, my mother on law refused any invasive procedures to extend her life. She was complaining of shortness of breath 2 days prior to her death and i gave her the choice that either I would drive her to the hospital sans oxygen, or the ambulance would take her. She went via ambulance and never left the hospital remaining steadfast that we complied with her directives. My wife and I spent 8 months caring for her as well as my father in law and our 4 children. The point it, do not feel guilty, it wasnt your choice and you dedicated 2 years, we did 8 months and that was stressful, but it is out of love that we sacrificed and no matter how hard it feels, i cant envision what they went through!
** My husband died July 15-13. We were married July 15-1999 and had 3 beautiful daughters. My girls told me the day if his funeral, mommy we are sad and sorry that daddy died on your wedding day. I told them and I believe this to be true, God brought us together this day and separated us this day. Mommy is happy that your dad is no longer suffering and home with God. Take the days one by one. The pain is the same but the days do get easier.