Won't go to the Hospital Bed!

[Emily B.]

Cals here. Husband dx in 2013. For the last two years, he has lived in a recliner (sleeping there). Of course, goes to the power chair when need be. But, now he has zero neck muscles and needs suctioning several times a day. We have a wonderful hospital bed with all the bells and whistles, but he refuses to get in it. My neck and back are hurting trying to give him milk, etc. while he is in the recliner and I am on the floor on my knees. I'm ready to have an intervention with all concerned including our two caregivers who take care of him while I'm at work. Thoughts? I've already told him I will not feed him while in the recliner (have to actually hold his head while he chews). It's very hard.

Thoughts, tips?

 

[Jamesgol]

Hi Emily,
I not nearly as advanced as your husband, but....
I hate the hospital bed. It's just far more uncomfortable that my recliner.
On the other hand, I feel a responsibility to do what I can to make my caregivers job easier.
The answer is to balance your respective needs. Your husband shouldn't demand his way all the time.
James

 

[Katalin]

Hi Emily, this may not be much help, but can I suggest you get into the hospital bed yourself and see if there are any issues with its comfort? I say this because my mother complained bitterly about some discomfort in her hospital bed mattress...the nice ALS closet supplied us with a few different mattresses to try out, and we finally found one that worked. I thought she was just being a little princess. Sadly she passed away last month, and I actually climbed on the bed to rest while I was clearing out the apartment. I had a better idea of what she was experiencing stuck in that bed all the time. When the closet came to pick up the bed, I saw that there was actually a bar at the point where it bends, right under the butt area, when you raise the head-end of the bed. With the mattress cells running side to side across the bed, she'd actually wind up resting her butt on the bar, as it protruded side to side between the cells. It was excruciating to her, and I just sort of didn't understand it. If I had gotten in the bed when she started complaining, I would have understood it better. She wasn't able to articulate "why" it was so uncomfortable. In hindsight, if I had known, I would have ordered a bed with solid base sections, instead of the less expensive one which had a spring base.

I did get Hoyered a few times to see what that was like, and I know it wasn't too smart, but I tried the Bipap machine too for a couple of breaths (which was a shock)...but I think it might help to empathize a bit with our PALS by experiencing what they experience, when it comes to comfort.

I hope you can figure out what might be keeping him out of the bed, whether it's comfort, or just the idea of being in a hospital bed.

 

[Emily B.]

It's the idea of the bed. He thinks that's the last step in this journey and I can't convince him that being in the bed isn't going to change anything.

 

[wishmobbing]

Seems like you'll have to fight for work safety's sake alone. Of course if he's less comfortable in the hospital bed it might be improved with a softer mattress and proper cushions and pillows so his weight is supported evenly. I wasn't super good at positioning, a therapist showed me a couple moves. My PALS liked it best to sit in bed a little reclined and with pillows under his knees, arms and shoulders

 

[ctollar]

Emily,
My dad was the same way. No matter what we did he refused to get into his hospital bed. We thought it was a fear of choking at first, but even with the bed almost at a 90 degree level he refused to get near it. I feel that he was terrified if he got in it he would never get out. Unfortunately, when he was transitioning into actively dying he did end up in the hospital bed.

 

[ctollar]

Is there anything you can do to help hold his head upright?

 

[Katalin]

Can you ask him just to "try it" for an agreed period of time, say an hour, and if he doesn't like it he can go back in the chair? It might be the thin edge of the wedge. So he would have some agency to "try" it. Then you can escalate later into an intervention based on safety of you and the caregivers?

 

[lgelb]

We fed my husband in his wheelchair, using a height-adjustable H table (also goes over a hospital bed) for the food. We gave up on suction, but we did that in the wheelchair, too. I would highly recommend an H table (which I am using as I type this, for my laptop desk).

I certainly would start with the idea that he could sleep more comfortably/avoid spine damage/pressure injury risks that sleeping in the recliner raises the odds of so it's a health intervention, not just a convention or comfort thing (assuming you try it and find that's true; yes, I would literally sleep in it so you can find/eradicate any issues).

Beyond that, most PALS are just as comfortable in a well-set up wheelchair during the day, and that gets rid of the argument that using the bed is giving up.

Best,
Laurie

 

[ReginaS]

Hi all,

not sure if I should start a new thread but a few people have recommended a hospital bed for us and we have a recliner that is definitely better than the bed for breathing and getting out of it.
What are the advantages of a hospital bed? We could get one but space is limited and if it is uncomfortable it will simply be sitting around.

Thanks,
Ina

 

[Emily B.]

To me, the advantages are the height - I will be able to stand to do personal care. I will be able to stand to do cough assist. I will be able to stand to take the Trilogy on and off. If we need to suction, then I'm not trying to move around on my knees around the recliner to get it ready. We can change his clothes and pull up his pants in the bed. We can roll him over to prevent sores on bottom. Some of this can be done in the wheelchair as well, but he's gotten to where he doesn't like to be in the chair. And, the chair does not solve the problem of swallowing and holding his head. The bed may not solve that either.

 

[lgelb]

If a soft cervical collar is not working in the wheelchair, I would look into a Savant head rest. In bed, a more structured plastic shell collar may help when he's sitting up. Neck Solutions has most of the major options that you can look at.

 

[wishmobbing]

Taking care of your back is so important and the height adjustment is a huge deal. I hope you can find a solution that works for the both of you.

The savant headrest for the wheelchair is great.