Preventing bed sores, transfers, and breathing issues while lying down

[Adviceseeker1]

Hello, I have three main questions and I'm also curious how other families are handling these issues.

1. How do you prevent and/or treat bed sores? My dad is mostly sitting upright in bed and there's always pressure on his tailbone. He can't lie down or on the side because it makes it too hard for him to breathe. It's difficult to find a position that will relieve the tailbone because it seems to be the only position he can be on when he is in bed.

2. Does your family member transfer from bed to chair and if so, what kind of chair and how do they transfer? My dad is able to slowly slide himself from bed to chair in the afternoon and then we hoyer lift him back into bed at night. The downside is that we have to use a regular wooden chair with no arm rests so it's not the most comfortable.

3. My dad can't breathe if lying flat or on his side. I'm wondering if this is something experienced by all ALS patients because of their weakened diaphragm?

Thank you.

 

[lgelb]

Does your dad have a hospital bed? Does he use a BiPAP? He should not have to sit up to breathe. And if he needs a Hoyer for assisted transfers, he probably shouldn't be doing unassisted transfers -- remember, the idea is not to use up unrenewable energy in routine activity like transfers, but to save it for things that are more enjoyable.

I'm sorry, why is he not transferring to a wheelchair or lift chair? A regular chair does sound very uncomfortable.

Best,
Laurie

 

[Nuts]

An alternating air mattress on a hospital bed and a rehab wheel chair with an air cushion are important! He should not be sitting in a hard chair, and eventually he will need a rehab chair that reclines in order to take pressure off his tailbone. Once the pressure sores started, we used special pads and diaper cream. It's essential that you keep the area clean and dry and change pressure points routinely (tilting the seat of the rehab chair 45 minutes out of every hour, for instance).
As Laurie mentioned, a Bipap is needed to help with breathing. Is your dad seen at an ALS clinic? They should be able to assist you with the appropriate equipment.

 

[swalker]

Preventing bedsores is much more important than it may seem.

I had bedsores on my heels, and it was very unpleasant and required a long time to heal. Don't underestimate how they may impact your dad's life and how difficult they may be to heal. Prevention is everything!

I use a hospital bed with a sophisticated air mattress (designed for the hospital bed) that automatically adjusts the inflation level to reduce the likelihood of bedsores. Since I have been using it, I have not had bedsores recur.

I also use a Roho air cushion as the seat in my wheelchairs. They are much more comfortable than foam and do a better job of reducing the likelihood of getting bedsores.

I would not be able to lie flat, whether on my back or on either side, if I did not use a bipap. I am less affected if I am on my side than if I am on my back, though.

If your father cannot breathe adequately, it is time to seriously consider a bipap. He does not need to use the bipap all the time, only when he is sleeping. I resisted using a bipap for a long time - much too long, really. I now find the bipap brings great relief and I have gone from not liking it to liking it a LOT.

Steve

 

[Adviceseeker1]

Hi everyone thank you for the advice. It's hard to find time to come on the forums and respond. I forgot to mention that my dad does use a bipap and he also does have the air mattress that goes on top of the hospital bed. I've taken your advice and convinced my dad to try to take some naps by lying down more and also turning to one side to give on side of his butt some rest and it seems to work well because he realized that he can still breathe with the bipap. I think he was afraid to try to lie down. However, he is concerned that he can't sit up to pee and will end up waking someone. Currently, if he is sleeping while sitting up, he can still use his urinal on his own.

As for sitting, I will have to think about using the hoyer lift to get him down. For now though, I think he prefers to slide from the bed to the chair and at least maintain some independence while he is still able to move himself a little. We do have a roho cushion for the chair but for some reason he likes using a donut shaped cushion. I did consider everyone's advice and I know that we might have to consider a lift chair or rehab chair in the future. The main reason he slides to the chair, is so that he can slide onto the commode and back. After a couple of hours, we hoyer lift him back to bed.

 

[affected]

We kind of slow transitioned to the hoyer and at first I would use it to get Chris into bed, but do a standing transfer to get him out.
There is no reason not to use combinations that work.
Would he consider a condom catheter while he is sleeping at night so he doesn't have to worry about urinating?

It sounds like you are doing a great job. I always felt like I was just bumbling along from one solution to the next change. In hindsight, I managed things pretty darn well. It doesn't always feel that way in the middle of the fray.

 

[Adviceseeker1]

@affected:

Yes I think you're right about using combinations for now. But I also do understand what everyone else meant about using a hoyer primarily because of safety and energy. It's good to know there are options on what to do next. Also thank you for the advice about the catheter. I don't know if it's needed yet but that's something I could probably ask the doctor about. But I also need to ask if his urinating schedule is normal or something that is concerning.

I've still tried to get him to try sleeping on his side like he used to do but he tells me that his leg feels numb after a while. I think we will have to keep trying different or slightly different sleep positions because he still complains about leg and butt skin irritation at night.

I feel the same way. I think we just have to find solutions as the issues come up. My dad is pretty good about finding his own solutions (but sometimes its tiring because we always have to do exactly how he wants it). But overall its going okay so far. And in hindsight, there are things I wish we knew earlier and also things that I think we did do a pretty good job on too.