This gentleman is a professional, and is only 50 years of age. He is about 2 years into the disease, and is able to slightly move his right hand (enough to propel the wheelchair if positioned correctly) and can move his head.
Does anyone out there have any advice for me as the newbie caregiver? We seem to have begun to share a great bond already.His wife requires some time away, of course.
They do not utilize any hoists or two-person transfer techniques, which, as you can imagine, makes the job physically demanding. He's super smart, so being quick-witted and on the ball really helps in his care. Monday I thought I would not survive. I actually eyed the front door and considered grabbing my things and making a run for it. But Wednesday went very well, even with some bumps along the way.
I appreciate any input.
I am using compassionate touch with hand massage for his fingers and some slight swelling of the right hand. I plan to do a scalp massage Monday. I am at home with a really nice cold right now, so not working (as I should be).
Input welcome!
Thanks, all,
Ruth (professional caregiver)
PS: This is my first non-elderly assignment
My mom has ALS. She has been one tough lady! She has been in an assisted care home now for 2 yrs & very much 'bucked' the system. Really didn't want to acknowledge she even had this disease even as she has lost all mobility. She is just this year saying this is what she has. We finally made the call to have a Hospice program come get involved. It has been a God sent!!! If the wife of the man you care for would want to talk with me at all I am here!!! The A LS association is amazing at providing tools & support. Now the Hospice people provide a caregiver to come out twice a week for bathing. They have helped incredibly to make my mom more comfortable & are an angel support system for all. I encourage you to be careful physically that you don't injure yourself. His wife too! Learn proper ways of transferring etc. so many things I could write here! I am available anytime for any questions or concerns you may have. Lisa
This is why there are employment opportunities for you and others, families really can't do this And those who haven't been in the situation, have no clue as to the toll it takes physically and mentally. Folks like you are a blessing to all of us. It gives the family some time to take care of themselves, the family, etc.
ALS patients are desperate to control any part of their lives. Keep this in mind by offering simple choices. Good luck, I am sure he appreciates all you do, as does his wife. Many hospice groups will accept ALS patients immediately after diagnosis. This typically provides additional services and may benefit the family.
I do the urinal (not sure why I can't think of the other word for that) toileting only. The bowel portion is reserved for his wife at his request. The toughest transfer (other than simply getting a man who is larger than me to stand up with no muscle control) is putting him into bed. I feel that they may soon have to realize it's a 2-person job. Thanks for the concern. I will probably be reaching out for help a LOT. I am so very worried about his wife. Wow. It's taking a toll on her.
One thing that may be important to him, since he is an intelligent man, is to be engaged intellectually. My friend continued to want to learn and to teach as his disease progressed. He wanted to talk to others about his field. His body failed him, but his mind never did.
What are your caregiving responsibilities other than massage? Do you have to lift him or do any toileting? Or is there a catheter? Taking care of someone with ALS is hard, but if you connect mentally, it can also be rewarding. Please let us know how it goes with him.