Advice for an AID

[GXTrex]

My father (PALS) is getting an aid from Medicaid starting early June. I assume he/she will have experience helping people with ADL's, but not with ALS as it is rare. What are good questions/discussions to ask if he/she is familiar with to see if it is a good fit?

As of now my father needs help preparing foods (that he can eat), and some dressing so this is more questions for the future. Thanks

 

[Nikki J]

You don’t necessarily need someone who has ALS experience. You need someone with basic skills. A good personality and work ethic and willingness to learn and to understand that ALS needs may be different than what they have been taught. My sister had a pt an ot and an aide all want her to exercise to gain muscle. Pt was fired ot quit when I told him why it wouldn’t work and aide listened and learned and accepted

 

[GXTrex]

The PT and OT wanted her to gain muscle? How does someone with a science/medical background not understand that is unfortunately impossible with ALS? Did you try to put them in contact with her neurologist?

 

[Nikki J]

You will run into plenty of people with various health care licenses who know virtually nothing about ALS. This will even include some nurses and doctors at hospitals. The good ones know they don’t know and research. We never did get a pt with experience in ALS but we got one who put in the time to learn

 

[GXTrex]

We have an interview next week. Is any sort of aid strength required for transfers? I know an electric Hoyer lift does not require any, but what about in the intermediate step before that is used?

 

[lgelb]

I would be very wary of an aide transferring a person who may (if you consider it at that point) be better off with a Hoyer. It's not just strength, but maintaining support to protect joints, etc.

From what you've said, your dad still transfers on his own, so I would roll with that for now and not make strength a criterion for an aide. Instead, I would stay ahead of his needs as regards the Hoyer.

 

[affected]

An aide should understand how to do standing transfers as many PALS use a combination of hoyer and standing transfers while they can. It is not so much strength, as technique. If you need brute strength to do a transfer the PALS should only be transferred with a hoist.
I also would strongly recommend you get the hoist asap because then you have it on hand if his standing ability changes suddenly.

 

[GXTrex]

Who would teach the technique to us when the time comes?

 

[lgelb]

An occupational therapist can be ordered to come out (usually from an agency) via your clinic. Or you can learn in advance from YouTube/Vimeo.

It is true that standing transfers can sometimes go on for a while assisted, but it is not the safest pursuit if standing is already difficult.

 

[affected]

True that standing transfers are not always the safest pursuit, but if the person helping is capable of judging then they are well worth doing while they can be done. It doesn't have to become an argument, each PALS and CALS team work out where the line is drawn.