Just started caring for a man with ALS.

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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


Ruth, someone with ALS is certainly one of the tougher people to care for. I had a friend with ALS. He battled the physical part for a couple of years before it won. I don't know if it would have been possible to care for him at home without the hoists, chairs, and handicap van. His muscles became progressively weaker, so he couldn't provide any help. It sounds like the man you care for is already to a later stage of the disease. Is he still able to speak?

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.
JessieBelle - I provide most aspects of care. For now, he has a male caregiver for showers. That may change. He is unable to assist at all in transfers, other than being able to lock his knees. When this is accomplished he nods slightly. Tell you what - it's not easy AT ALL. They do have a Hoyer (?) lift, but do not use it YET. He is able to speak, very slurred, and very softly. After 8 hours i feel like my cells ache from leaning in to catch every word. YES I engage him intellectually. I used to work for people in his profession (I am going to be careful not to give away his identity here) so we have a good basis for some conversation.

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.
I know what you mean about it being tough on the wife. My friend's wife went from being young to old in a few short years. They raised funds to have their whole house reworked and to buy the van. Their lives revolved around the ALS. I have been around many sad illnesses, but ALS must be the most difficult I have seen. It is a most cruel disease.
Hey Ruth, good luck with your new client. I helped my friend who went down the ALS road. She used a transfer board. She was afraid of the Hoyer lift. She did ultimately need 2 people to help her move at all. Contact the local MDA/ALS center. I thought they were WONDERFUL. They had speech therapists that helped you set up communications boards. They taught us how to do yes/no questions. And how to help the client narrow down the response possibilities. He can use his right hand for any choice if you teach him that for the 1st choice he keeps his hand in position and for the 2nd choice he moves it (for example). BTW there is no charge for the services.

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.
Thanks to all for support and comments. What I've been doing so far, is I made flash cards for the various chair position changes so he only has to begin a word, and out come the cards! He loves this. I can then push the buttons in order, and he nods when the chair is in the position he desires. We do tend to use yes and no questions, however he LOVES to talk. For now, I'll keep conversing with him as he is strong enough and able, since it gives him great pleasure. I know they are hooked up with the MDA/ALS center, as I go through his email for him and answer them through dictation. I've seen the emails from that center. Hospice is such a great resource, but I'm afraid they will view that negatively. I probably won't bring it up - unless it really seems appropriate. I really like the slight hand moving as an answer if he is completely unable to speak. The AudioVox machine is AMAZING - and we tested the alarm on it yesterday. With the nod of his head he can initiate an alarm which I can hear anywhere in the house - even though it's a HUGE house. Sure got their elderly dog moving yesterday! :-) One of the coolest things is the AudioVox machine can run the household sound system. He is able to select and start a play list, through the surround sound speakers. Yesterday we listened to classical music. The "problem" with this is he keeps taking to me even with the music on, and of course I have to filter out the music and hear the weak and slurred speech. I'm getting good at it. Ha ha. Takes a bit of practice. Thank you again for input. Still hoping they realize he's a two person transfer. Yesterday I managed two of the moves alone, but I've been sick with a nice virus so I was weaker than usual. The wife was there, and we did fine. Thanks again.
Update in case you're interested! I have pretty much mastered the transfers by learning to deeply bend my knees and stand "with" him, basically. Trial and error, and great patience, does pay off. Again - I do not know how family caregivers do this full time. Even evening pill taking is a 20 minute ordeal.
Ruth, thanks for the update. On the pill giving . . . the AL where my Mom is crushes the pills and mixes them w/apple sauce. It works for all of the folks there . It's a memory unit and (believe it or not) people forget how to swallow the pills so the apple sauce seems to work. A word of caution . . . not all pills should be crushed . A call to the pharmacist can clarify if this is all right with the meds you are giving.

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.
I posted a blog about my feelings caring for this guy. Previous entries are stories of my caregiving. I had massive difficulties again with the transfers. So tough. I want so badly to do all of this perfectly. I'll keep trying... HAVE to give that wife some time off.
Are you still caring for this man with ALS Ruth?
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

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