When to stop using hoyer and stay in bed?

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Lifeofpi

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My 80 year old mother in law is now entering what we believe are the final stages of the disease. She is almost completely paralyzed from the neck down and needs the bipap 24 hours a day. No trach or stomach tube. Her voice is relatively strong, however, and we have done the maximum to give her access to her friends and family. To that end, we have been using a hoyer lift for the last couple of years. Once in the wheelchair, she is pushed by an attendant into the family room where she can interact with her friends. My question is at what point do ALS patients stop using the hoyer lift and remain in bed all day?

We have a new attendant and she is struggling with the hoyer lift. It is one of her chief complaints. She often asserts that the hoyer lift requires two or three attendants in facilities. Prior attendants have adjusted to handling the lift, but I don’t know whether my MIL is now reaching the point where the hoyer lift involves too much risk for her and her attendant. How do I know? Is the test really how comfortable my MIL is in the wheelchair itself such that, if she’s okay in the wheelchair there should always be a way to get her into it?

This is a tough moment for the family. We want her to get out of bed and interact. We also don’t want a new attendant’s anxieties to drive our strategy with the hoyer lift. Attendants would be happier to leave the patient in bed than manage the transfer I’m sure. It makes for an easier job. On the other hand, we don’t want to risk a fall or ask the attendant to do the impossible.

I would appreciate thoughts from any and all.
 

lgelb

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You hit it exactly, LoP: as long as your MIL wants to transfer, she should be transferred. True, there are policies in facilities where the aide may have worked that require 2 helpers for legal reasons.

While the procedure/accommodations for transferring may require adjustment, such as using a cervical collar for a drooping neck, perhaps the aide just doesn't want to do it for whatever reason. Further exploration about what she ostensibly finds difficult, or maybe just doesn't like going against what she thinks is a policy, is warranted, but if after frank discussion, she still doesn't want to do Hoyer transfers, you need a different aide.

I would watch another attendant do it and see if your MIL seems at risk at any point, and if you are using an agency, ask a supervisor to assure the aide (assuming she meets your standards in other respects) that it's OK to continue transfers, and perhaps observe to ensure proper technique. If you are not using an agency, you can ask one attendant to speak with another and provide a little peer training, at the usual hourly rate. Worst case, perhaps a family member can be the "other side" person just for support? It's not really that complicated.

It would be a crime to confine your MIL to bed before she has to be, if at all. Many of our PALS only "took to bed" in their last week, and indeed, being too weak to transfer can be their own threshold for going on. Thank you for asking the question, and let us know if this is unclear.

Best,
Laurie
 

GregK

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Totally agree with Laurie.

Your current attendant is a loser. Consider changing.

My 63-yo wife can and does use our lift all alone. Without issue.

I was stuck in bed for five straight weeks waiting on my PWC repairs.
I progressed more in those weeks than in the preceding six months.
 

wishmobbing

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Your mother should be the only person deciding that. If she doesn't feel up to it, she could have visitors at bedside, too. But I tend to agree with others in that the lift and it's operator shouldn't be a hindrance.

Greg, that's awful!
 

Jrzygrl

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I was told by an OT that came to our house that any Hoyer lift was a 2 person transfer. I got rid of her.

I transfer my 6'1, 225 lb husband several times a day - by myself. We have an aide that comes in 2x a week for a few hours. She also transfers him without issues. My husband talked my daughter through it one day when I had kidney stones. I would NEVER confine someone to bed because an aide found it difficult. See if you can replace that attendant.
 

KimT

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Yes. If your MIL wants to be in another room, she absolutely should! I knew a PALS who weighed 300 pounds and his skinny wife transferred him alone. His teen grandchildren did as well.
 

Atsugi

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Lemme pile on. My 13-year-old girl did the whole transfer job for her totally paralyzed mom, including pushing the loaded Hoyer over carpet.

We put the hospital bed in the family room where everybody spent their time watching TV. I put a little bed next to hers so we could sleep "together."
 

Lkaibel

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She probably has a background in working at facilities rather than in homes. My experience was that facility aides wanted everything to be a two person job. In homecare, it does not work that way. Yup, to pile on some more send that one back.
 

Lifeofpi

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Thank you all for your responses. Watching the process of Hoyer Lift transfer and realizing that our mother gets incredibly anxious and irritable and takes it out a bit on the attendant. Additionally my mothers neck is less stable. Is there a c-collar that can be used for this? We will work with her therapist for the anxiety bit.
 

GregK

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There are soft collars for general use.

There also are slings with neck support.

:)
 

lgelb

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The sling should have back support, but there's no sling that's going to substitute for a neck (cervical) collar if needed. I favor medium density foam to start with. Measure her neck for the right height; you can find these on Amazon.
 
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