New Member-Mom has ALS

[ccsam15]

Hi,
My mother was diagonsed with ALS November 2007. Since then she is no longer to walk, feed or bathe herself. She is totally dependent on my father to lift her in and out of bed and to and from her wheelchair. This is very hard for my Father where my mother is dead weight. When she decides that she would like to get out of bed it is a task.She is sore to the touch therefore when my Father goes to transfer her from the bed into the wheelchair it is a task.....she cries in pain. She was on Morphine for the pain but that wasnt working.She is now on the Ratio patch, it is helping with the pain but you still cant touch her...she says taht she is sore to the touch but she is no longer in Chronic pain. I was wondering if anyone could recommend and lifting and transfering devices that would help my dad? My mother has no movement what so ever and her neck droops when she is in the wheel chair....any info that you could pass on would be greatly appreciated!

Regards,
Carissa

 

[Steve100]

Hi Carissa

Sorry to hear about your Mother. My Mother has it too.
Can you tell me what a ratio patch is?

Thanks

Steve

 

[CindyM]

Hi Carissa- I am sorry to hear about your Mom. THis is tough on everyone, esoecially an older CAL (Caregiver for person with ALS.) I am glad you decided to join us! Folks aroudn here are very caring and very helpful! We've actually had some discussion on how to transfer folks - you might try searching previous threads from the tab at the top of this screen. And there is a thread on how to make a neck brace that you might find helpful as well.

Plus, as folks check in you should start to get lots of hints. Write back anytime and let us know how things are going! Cindy

 

[ccsam15]

I am not very familar with the Ratio patch but it is a sticky patch that we put on her that last for three days. It releases a certain amount pain killer every hour.

 

[Steve100]

ok, thanks Carissa

 

[Al]

Hi Carissa. Have you registered with the ALS Society? They have a loan closet where they loan equipment to patients. The numbers are at www.als.ca and they might have a Hoyer Lift for helping move your mom. They may be able to help your dad get some help with other things as well.
AL.

 

[beaner1]

Hi Carissa,
I don't know what resources you have there, but I know that our ALS Society provided us with a lift for moving my husband - you're right about the dead weight, and difficulty in lifting! I couldn't move my husband prior to getting the lift, and was dependent on my son to move him - that was tough! The lift we received on loan from the society is a sling-type - they installed things - a track - in my ceilings (sorry if I'm not explaining this very well!) for the actual lift - they put a track in my living room, bedroom and bathroom. The lift itself is movable from track to track - it has a device that hooks to the sling that you wrap around the patient, then raises and lowers the person in it, so you can move them from bed to chair, toilet or tub to chair. It's really quite slick. My husband complains that it compresses him, and is sometimes painful to sit in, but there really is no other alternative. The complaint I have is that it can take a bit to get the patient all strapped in and moved - if the patient needs to get to the bathroom quickly, it can be a problem!

Hoepe this helps - sorry, I can't remember the name of the lift!
Beaner

 

[ccsam15]

Thank-you for your relies......We are registered with the ALS society and they are in the process of looking for a Hoist type life....but I believe that this will not suit my mother if she is so sore to the touch! I was wondering does anyone know anyhting about the easy pivot? Do the patient need any strength in their legs?

Regards,
CArissa

 

[fiddleplayer51]

Hello Carissa,
In the hospital where I worked we used Total Lift chairs which are basically padded stretchers which convert into chairs. The Total Lift chair is placed directly beside the bed, and then a crank sends the mattress part of the Total Lift out to the side and onto the bed mattress. Prior to cranking out the Total Lift mattress, the patient is rolled onto his/her side facing away from the Total Lift. Once the Total Lift pad is cranked over onto the bed mattress the patient is rolled back onto the Total Lift pad and then pad and patient are cranked back onto the Total Lift chassis. There is minimal patient handling. Here's a link to a picture and description of the Total Lift:

http://www.wyeastmed.com/lateral/totalift-2.shtml

I'm not a representative of the company; I don't own any stock in the company. LOL I'm just a hospital nurse who has had many patient transfers simplified by this stretcher/chair. This item has been a godsend over the years. I don't know if ALSA has such an item.
All the best,
Jane

 

[Xtina1217]

Carissa,

Another possible option that you have regarding the transfer is a beasy board. This is something that was brought to our attention a while ago. Although it was not what we were looking for (my mom was trying to transfer my dad who is much different in both weight and hight, so she did not feel comfortable) it was an option that we had reccommended to us more than once from different health care professionals. It is basically a transfer board but is fast moving and smooth so its not as rough as it would be for your dad to pick up your mom and move her. It may not be wonderful, but if it's better than what she is experiencing now... its a start.

They can be pretty pricey, but when we were thinking about getting one I did look on ebay and found them to be much more afordable. Before purchase I would go to their web site and see if you can find some type of video, you really have to see how it works before you concider it as an option.

hope this helped!

Christina

 

[ccsam15]

Thank-you...We actaully looked into that....Our Local ALS Society is providing us with a Hoist so we will see how taht works!

Thank-you for all your responses!

 

[MtPockets]

This is the type system that I have used for about 6 months and I love the way it works. It works off a battery the size of a cassette tape, and my wife does not have to do any lifting. It is called the Voyager Lift System. The rails can be in any room and when you need to lift someone you just move the small motor and strap harness to that room.
It takes no effort on my part to get in the lift sling, and is comfortable if you adjust the straps to fit you properly.
You can see it at
http://www.southwestmedical.com/Pat...Ceiling_Lift_w_2_Pole_Easytrack_System/1539p0
I tried the lift vest but it did not work. I had to have someone lift me and it kept riding up under my arms and hurt. http://www.liftvest.com/buy.html
I hope this helps.

 

[terryscare]

Hi Carissa, My husband has ALS. I am a brand new member to this forum. I have been using the Hoyer lift for about 2 years. It works great. Of course, I am exhausted all the time but that is ok. It will probably still cause your mom some pain when the sling is put around her.

terryscare

 

[nspoc]

RE: Easy Pivot

Hi Carissa -

We had the Easy Pivot. Our PALS thought it was comfortable and you do not need any strength anywhere to use it. It is good to take off pants and clean someone's behind.

For us it took much longer than using the Voyager lift. It is quite something to get someone strapped into that.

The next problem is the feeding tube - Pat has a feeding tube and the position you end up in put too much pressure on the tube and resulted in pain and bleeding.

Another significant problem - breathing. At a certain point Pat could not tolerate the hunched over position - made her short of breath and panicky.

I don't recommend the Easy Pivot due to the progressive nature of ALS. They are expensive - and eventually you will be unable to use it. We ended up giving it away. Go directly to some kind of ceiling lift if you can afford it. We, also, have the Voyager and really LOVE it.

A note on getting to the bathroom: our experience is that no lift is fast enough for urinating. We lift our PALS and bring a commode under her. We never try to get on the toilet - too time consuming. If possible a urinal is a better solution than trying for a quick toilet transfer. In women that can be tough. We were most successful with the Freshette (not sure if it is still on the market) - but that is not perfect.

Good luck! Beth