"How Do You Navigate Difficult Topics Like Mortality?"

Tagged: Advocacy, ALS, ALS advocacy, ALS and mental health, ALS and preparing, ALS assistance, ALS association, ALS awareness month, ALS caregivers, ALS clinical trials, ALS research

This topic has 2 replies, 2 voices, and was last updated 1 day, 21 hours ago by Gideon.

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- May 20, 2022 at 7:19 am #21959
  
  Amanda
  Keymaster
  
  On our forum, we try to tackle all things ALS, even though some topics are scary and challenging to discuss. We all know that ALS is a terminal illness even though many pALS are living longer. We try to focus on having a good quality of life now!
  
  Everyone, pALS and otherwise, have to face our mortality. When you are diagnosed with a terminal illness, and you can see and feel the disease progressing, you will likely experience a wide range of emotions. Most of these will be experienced not only by pALS but also by the caregivers and loved ones.
  Anger
  Grief
  Fear
  Searching/Meaning
  Guilt
  Anxiety
  Depression
  Loneliness
  Confusion
  
  How do you deal with these emotions? Have you reached out to a mental health care provider for yourself, your caregiver, and or your loved ones? Have you or will you reach out to Hospice or other organizations for support? What things can you do to help address some of these emotions so that you can focus on having the best quality of life possible now? What organizations have ways to support the mental health of pALS and their families as their illness progresses?
- August 3, 2022 at 7:37 pm #22452
  
  Jerry Fabrizio
  Participant
  
  Hi,
  
  I have watched my mother and cousin die of this disease I have C9orf72 genetic ALS, Bulbar. I know what is coming. When I first received the diagnosis, I would cry every time I talked about it. Some of that was the ALS. I have watched what will happen to me and it breaks my heart to be honest. I like to help people and I do not like having people have to help me. I have lived 60 yrs. like this. Nuedexta has helped me not cry as much…
  
  I am not afraid to die, I think that is important, I will fight until the last day. I was going to say breath, but I am not sure if I will be breathing by myself when I die.
  
  I deal with the mortality talk with my friends and family by explaining how I deal with waking up each day. I praise God and then start the fight for the day. I take my pills and sing to help my speech, then exercise and search for new drug trials. Then all of the sudden the day is over. Ready for the next day if I wake up. Repeat…
  
  Now I get to look at these Forums and try to help also.
  
  Everyone will die someday; I will die someday. It may be ALS or maybe another heart attack or something else that comes up. I am not promised tomorrow….
- August 5, 2022 at 1:53 pm #22461
  Gideon
  Participant
  Hi
  
  My name is Gideon ,and I caregiver for My wife with ALS
  
  Anger : Ever hour
  Grief: every day
  Fear: every Moment
  Searching/Meaning : All over the world try to find any answer
  Guilt: Do I do good enough?
  
  Anxiety: Every day dealing with the health insurance to provide my wife with right care
  
  Which they didn’t have any knowledge about the ALS, (98% don’t know what ALS is)
  
  Depression: When sun go down and you just laying in bed and your eyes just looking at the Celling wonder WHY
  
  Loneliness: No Family support , jut old friend far a way from us,
  
  Confusion: If I am doing right or wrong
  
  So sad to see love one just disappear in front of you
  
  Yesterday my wife told me : I know see thy end ,and I am scared to die
  - This reply was modified 1 day, 20 hours ago by Gideon.
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