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Help journaling
I am care giver to my husband Todd. He was diagnosed 2 years 4 months. His ALS mostly in his balbar area. Starting to show weakness in arms. I am the only one that can understand him. He drools, on vent, feeding tube. He is struggling with energy and daily living.
Can anyone tell me of a journal to guide me and help me deal with the anger, daily struggles, trying to be present at work, and dealing with losing your soul mate. I am lost and need an outlet. I don’t want him to leave me alone.
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2 Replies
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This website always has excellent and helpful information. This page is for caregivers.
https://www.youralsguide.com/caregivers.html -
I lost my wife to bulbar ALS after 39 months. I was her primary caregiver. I found information from the ALS association to be very helpful in preparing to deal with the progression.
You might want to check out als.org/navigating-als.
Things that you will need include:
Text to voice program for his phone and a blue tooth keyboard. You should also look into a Tobii device which will enable him to use his eyes to communicate. There is a learning curve and the sooner he starts to use this type of equipment the better. If you don’t have a power wheelchair you should start the process as it can take 6 to 9 months to get one made for him. In the meantime you can get a loaner from the als association.
The emotional side is very difficult to deal with. It was hard to see my wife continuously lose her abilities and be ready to help her 24/7.
If you would like to talk to me please feel free to call. 516 652 8314
Len
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