Trouble with transferring

[Maryl08]

My mom has progressed a lot within the past couple of weeks. She went from being able to get to the bathroom on her own with a walker to being able to only stand and we would push her in her wheelchair and help transfer her onto the toilet.

Now she is not able to stand anymore and my sister and I (we're pretty petite) are having a lot of trouble lifting her. She has also started to become anxious and yells at us for everything. She cannot talk because she is bulbar onset but she screams and we are starting to go a little crazy here. She screams every hour for us to get her up. Hospice and pressuring us to move her to a facility but I know that is not what my mom wants. I'd like to keep her home if possible.

How does everyone else do transferring, toileting, dealing with anxiety, etc?

 

[gooseberry]

Meds and a joyer lift. Is hospice not providing the hoyer? If not the als association may be able to loan you one.

 

[lgelb]

Yes, you need a Hoyer lift. Providence should be able to access one, but the ALSA lent us ours. She is probably anxious that she may be stuck or trapped if you are unable to lift her, so I wouldn't delay. Is she in a power chair where she can tilt/elevate her legs to get a position change? I remember referring you to a DME here but not sure what happened after that.

 

[KateEmerson]

I don't know how large your bathroom is but a Hoyer wouldn't fit in ours. We use a lift and a commode .

 

[Maryl08]

Which Hoyer lift would you recommend? I'm looking at them from this website: HoyerLift.com - Hoyer Lifts and Slings

I'll ask our hospice tomorrow and email ALSA today. I've been trying to get a power wheelchair from them for a while but no news.

Laurie - we ended up not ordering the wheelchair because we felt we needed the help from hospice right away and the wheelchair would have taken a few months to get here.

Hospice is pushing for us to transfer her to a facility but I would really like to keep her at home if it's possible. I've read many stories of their PALS passing peacefully at home and that's what we are hoping for. Our hospice said that we should be focused on comfort and safety and happiness doesn't fall into that.. That just doesn't seem right to me.

 

[lgelb]

We did that too, Kate. The bathroom was big enough but the threshold was too rough, try as we did to smooth it out. Still, either way, Mary, you need a lift. Only buy one if neither the ALSA nor hospice can help. If you have to, the cheapest "power lift" will probably do, as long as it fits where you need it, including when the legs are open around the wheelchair for transfers.

 

[sunandsea]

We are at the point of using the lift more and more as well. Unfortunately, my husband's arm strength is diminishing and transfers are becoming a problem. He has no use of his legs at all. The lift fits in the bathroom but it's tight and we're trying to figure out new ways of doing things, including showering. I sometimes wonder if we should be contacting hospice services. I feel like we could use more help than we have (which is none at the moment) but probably not hospice yet. I'm glad if we aren't at that point but it would be nice to have some help. We had it when I was working and now that I'm home, I've been doing all the care without help. It's time to find some help again, however. Today was especially hard so this thread hit home.

 

[Maryl08]

Sorry to hear you are having a rough time too sunandsea. Hospice has helped us a lot. An aid comes twice a week to help with bathing.

Is sufficient arm strength needed to use the lift? My mom only has one good arm and no lower body strength. Her other arm is very weak and hurts to move.

 

[lgelb]

Mary, no strength is required to use the lift (although being able to shift the torso, to make applying the sling easier helps). Your mom does not need to help. You guys do all the work. Check out a YouTube video and you'll get an idea of how it works. Note: to use a floor lift, which is what we are talking about, you have to have a sling as well.

 

[affected]

Mary my Chris could not move his arms at all really, and his neck and torso were bad.

Using a hoyer lift allowed me to move him so easily and place him in bed just right. He did nothing, I did it all. It was pretty much effortless, just go slow and they are amazing things. I'm only 5' tall, and the hoyer was amazing.

 

[sunandsea]

Mary - Sorry - didn't mean to confuse you with my comment about arm strength. As others have explained, no arm strength is needed - that's why we are using the lift more than we did. I think I need someone to come and show me how to get the sling positioned and how to get more use of it. I also need to remove the carpets in our house so it moves easier in a couple of the rooms. Each day brings new changes.
So glad hospice is helping you!

 

[Diane H]

The type of lift is far less important than the type of sling you use with it. There are other types of lifts besides the Hoyer type, such as lift to stand. These are not useful for ALS patients who will need upper body and head support. The choices in Hoyer lifts are wether to get a manual hydraulic lift or a powered lift. The manual takes a bit more effort to raise the patient but is a lot more expensive. The type of bar the sling hangs from can be a two hook bar or four hook, often called a cradle rather than a bar. The cradle is heavy, awkward, and a real head banger. The two hook bar works with nearly any sling, even if it has four straps. Hoyer lifts can often be gotten free from ALSA or MDA loan closets.

The type of lift is far less important than the type of sling you use with it. The sling you need is called a hygiene or split leg sling or U sling. It is the only one that ALS patients should even consider. It is far less bulky than the others so it is easier for the caregiver. It does not fit under the patients bottom but under the thighs for lifting. That leaves the patients bottom open for sitting on the toilet. Unlike "commode" slings that have a hole in the seat for going to the bathroom, the hygiene/split leg sling/U sling, the patient can be hoyer lifted into their chair and the sling removed and put back on as need. Leaving a commode sling in place all day is not comfortable and can interfere with pressure relief cushions. The hygiene/split leg sling/U sling can be left in place without these problems by simply moving the leg straps out from under the thighs for comfort. Get the one with the headrest.

 

[Maryl08]

I spoke to hospice about the hoyer lift today and they are going to have OT come in and assess it. However they think it will be impossible to use in her room because of the carpet and that the OT will not approve it. Is it true they are impossible to use on carpet? The nurse also said 2 people are needed to operate the lift..

 

[lgelb]

No and no, unless it's thick shag. In facilities, there are often [frequently ignored] rules about operating a Hoyer w/ 2 staff members. At home, many of us petite women regularly lifted our spouses solo, much larger than your mom. Ask what documentation they have to deny this (it's probably a money thing -- remember the hospice/equipment thing) and if they are intractable, ping the ALSA if you haven't already.

 

[Maryl08]

Thanks for the quick reply Laurie. That is what I suspected but I've already contacted ALSA just in case. Fingers crossed we can get one soon because the way we're just sort of winging the transfers right now and I can't imagine it's all that safe. The nurse has suggested diapers so we don't have to transfer her as often but my mom is refusing as of now.