Hospital bed or not?

kljack16

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Hi All,

What is the benefit of a hospital bed over an adjustable bed? My husband has decided he does not want to do a trach. He currently is thinking about a PEG, but doesn’t “need” it yet.

His upper body is where the ALS has presented first, which means his breathing is declining incredibly fast. So - if I get a bed that allows me to raise his upper body and lower body, is there really a need for the hospital bed?

Thank you in advance for your advice and experience.

Kelli
 

lgelb

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CALS may differ here, but I think most agree that a hospital bed is best. You can raise the entire bed to get a Hoyer lift underneath it, you can lower it for transfers, you can make the bed almost vertical for urinal use, and of course there are more options for overlays, slip sheets, special mattresses, etc. that may help with transfers and caregiving.

The head/leg adjustable beds are missing the part where you need to move the whole body in certain ways, and the entire bed likewise. You don't generally need a headboard or footboard which many DMEs will try to sell you, and it may well be more economical and easy to buy your own bed with a medical foam mattress to start with.

I am sorry to hear his breathing is declining. Let me know if you need help with BiPAP settings.

Best,
Laurie
 

swalker

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I have a hospital bed, but have never had a regular adjustable bed. Therefore, I have no first hand experience to discuss the differences between the two and will not attempt to do so here.

My bed (Hill Rom Advance 1135) has power actuators for head, knees, elevate, trendelenburg, and reverse trendelenburg movements.

What I can discuss are the pros and cons of a hospital bed.

Pros for my hospital bed:
  1. The bed elevate feature allows us to position the bed at a height that is better for my wife when she is doing passive range of motion on my shoulders and hips
  2. I have a special air mattress that adjusts the air pressure to reduce the likelihood of pressure sores. I can confirm that this is very effective at preventing pressure sores.
  3. The bed automatically raises the head and knees in unison so that I don't wind up with too much weight on my tailbone
  4. I can easily put the bed in any position I need. It is wonderful and is easily the most comfortable place for me to be
Cons for my hospital bed
  1. We cannot fit the hospital bed and a regular bed in our master bedroom, so we sleep in separate bedrooms. This is the biggest disadvantage. But, it is necessary to have access to both sides of the bed for medical equipment, range of motion, etc. So, even if there was room for another bed in our master bedroom, the two beds could not be next to each other.
  2. It is a hospital bed. It looks like one and contributes to the whole aesthetic of the master bedroom leaning toward hospital room.
  3. Hospital beds are complex things and they can fail. We have had one significant failure that we were able to repair by ordering a part and installing it. We have had several minor failures that we just live with. Note that my bed is around 2 decades old and was donated to us, so these issues might not be as prevalent with a newer bed.
Steve
 

GXTrex

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@swalker

How much space is needed on each side of the hospital bed?
 

lgelb

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We had my [narrow; more like a cot] bed ~4 inches from my husband's bed and delivered care from the other side. There were about 2 inches from the wall from the head of the bed if the head was elevated, so we didn't deliver care from there, either. The only thing we did from the "tight" sides was pivot turns to get him into the sling in the morning, which we had just enough room for because the bed was obviously flat, to pivot him using a slip sheet.

Without a headboard or footboard, with a blanket, quilt or bedspread on it, a modern hospital bed looks like ...a bed, unless you look underneath at the undercarriage. We had a small side rail on the spacious side that we used to hold the wired control, but that's not really necessary.

Modern new bed motors, if Linak, shouldn't fail. But the kind of bed capabilities Steve describes are the best kind to have.
 

swalker

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GXTrex, enough room for my wife to position herself so that she can do passive range of motion on my arms and legs. That is probably about 3 feet.

I don't yet use a hoyer, so if you do you would need to factor room for that as well.

I have a stand that holds my bipap, humidifier, and associated equipment. It is positioned to the side of the bed and takes up a couple of feet.

So, I would guess about 3 feet on each side would be the minimum I would want to have.

Steve
 

GXTrex

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What humidifier do you use? What does it help with? What other accessories do you have? I want to know what's available to help my dad. Thank you so much
 

swalker

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My bipap is a ResMed Astral 150 ventilator with 2 external batteries.

There can be a humidifier in the circuit to prevent dry air from causing issues. Without the humidifier in the circuit my mouth and airway gets beyond uncomfortably dry.

I use a Fisher & Paykel Healthcare MR 810 humidifier.

The output from the Astral 150 goes to the humidifier. The output from the humidifier goes to the face mask I use.

I really like this setup and would not want to change anything about it. It took too long to get the settings on the Astral 150 right for me, but once it was dialed in, it has been wonderful.

All of this is mounted on a ResMed stand that has 5 caster wheels on it. It is sort of like a short, heavy duty IV stand. It has brackets to mount the Astral 150 and the humidifier. The stand was stupidly expensive, but Medicare paid for it and it has really been a great addition. Before having the stand, we had this stuff sitting on a dresser next to the bed. That was totally impractical for us.

I also have a cough assist (I can't remember the brand, but think it is respironic). It is very helpful.

In addition, I have a corner of the bedroom devoted to circuits, masks, and fittings for the Astral 150 and cough assist. It is amazing how big of a pile of stuff we have accumulated!

Obviously, I also have a collection of 5 wheelchairs, along with more chargers than wheelchairs, a stack of spare wheelchair wheels and tires, and spare tubes (for the pneumatic tires). Along with that goes several toolboxes worth of wires, connectors, insulation, wire looms, etc. for dealing with wheelchair electronics. A key item is that I have a Permobil programming dongle that allows me to connect a computer to my Permobil wheelchairs and configure them they way I like. Likewise, I have a programming dongle for the Dynamic Control DX system on my Magic Mobility X4 wheelchair. Most people will not need those dongles, but they have been essential for me.

I also have a backpack on each wheelchair outfitted with rain gear, tools, bicycle pump, and necessities. That way I don't have to reconfigure anything when selecting a different wheelchair to take out for my day's adventure.

On top of all that, I have somehow managed to build an amazingly large collection of wheelchair spare parts. I have kept all my worn out motors so that I can have them rebuilt, if needed. I also have push handles, transfer handles, side supports, back shells, seat plates, headrests, and various other fittings. It is great to have all that, as it allows me to tinker with my wheelchairs and get them set up just right for me.

What I don't have yet is a hoyer. That will be the next big piece of equipment. I don't think I am ready for it yet, but Al's recent post has me rethinking that. I may move toward getting one so I have it when I need it.

I am sure I have left out a lot of stuff.

Steve
 

kljack16

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Thank you Laurie. He’s on an AVAPS right now. We go to the Pulmonologist Monday. We’ll see where we are after that.

Thank you for the advice on the hospital bed. I really appreciate your insights. I didn’t think of the whole body movement … we seem to plan what we can, but I generally feel like I’m in reaction mode.
 

kljack16

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Thank you Steve. Very helpful, and again, things I didn’t know or hadn’t thought of. I truly appreciate your insights and advice and I wish you all the best. 💞💕
 

GXTrex

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@swalker

Thanks so much for your response Steve.

My dad's problem is too much saliva, and phlegm. His mouth does not seem to be dry. We are getting a medication to help with saliva. For the phlegm we have a cough assist and suction machine.

Did you pay for all those wheelchairs? They can get very expensive and Medicare only covers one every 5 years I believe. We currently have a loaner manual wheelchair and will get an electric when we need too.

We are getting a loaner electric Hoyer and loaner electric hospital bed. We do not need the Hoyer yet but want to have it on hand for when we do. How do you do transfers?

Do you have an eye gaze? We are waiting for it to ship but cannot yet as he is cant get Medicare part A and B at the same time which is frustrating.
 

swalker

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GXTrex,

My first wheelchair, a Permobil C500s VS was covered by private insurance (United Healthcare). I paid a copay and for the seat elevate function, so my out of pocket cost was around $4,500

When it was in the shop a LOT during the first 6 months of ownership it became apparent to me that I would need a backup wheelchair. We found a used wheelchair that suited my needs (Permobil C500). Total cost to purchase it and configure it for my needs was about $4,500.

The day before we were scheduled to buy that backup wheelchair, I found a Magic Mobility X4 (four wheel drive) wheelchair on craigslist for $500. We scooped that one up too. Over the years I have put an additional $3,000 into it (batteries, lithium battery conversion, tires, tubes, leg canes, motors, brakes, etc.)

A couple of years later I saw Permobil C350 on craigslist for $800. That is a rear wheel drive wheelchair and I really wanted to try one out. It is more compact than my other wheelchairs, so works better in the house. By the time I got it all sorted out and fitted to me I had spent a total of about $1800 on it.

When my original wheelchair (Permobil C500s VS) started to show signs of wearing out I started the process of getting a replacement through insurance. By then, I was on Medicare and it had been 5 years since getting the wheelchair. I worked with NuMotion for over 9 months to get a Permobil F5 VS approved. Unfortunately, they were unable to establish what my out of pocket costs were going to be unless I actually committed to buying the wheelchair. Their estimate was $18,000 to $20,000. I was unwilling to pay that amount (and potentially much more) and coincidentally found a used F5 (non VS) on Craigslist a couple of days later. By the time I bought that and had it set up for me I had spent about $5,000 on it.

I have generally found it to be far easier and very cost effective to buy used wheelchairs. I am fascinated with the technology, which is why I have so many. Working on them is a lot like working on bicycles, which is something I used to enjoy doing. So, it is a bit of a hobby for me. What makes this work is having a good friend who does all the heavy lifting and wrench turning on the wheelchairs. He is a former bicycle mechanic.

I would not recommend my wheelchair addiction to others. It is great for me, but if it gets any worse we are going to have to get a bigger house:).

I do not have an eye gaze because I am still able to talk, though with a very diminished voice and slurring. Unfortunately, eye gaze is not much of an option for me when the time comes, because the muscles that control my eye movement have been affected. My doctors have called it extraocular opthalmoplegia. I can still move my eyes some, but not enough to work an eye gaze device.

Steve
 

KenM

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thanks to all, this is hugely helpful for planning purposes.
 

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We started in a regular bed, then went to a split king adjustable, and from there to the hospital bed (over the course of five years). The adjustable worked for quite some time, but eventually we needed capabilities that it did not provide. The height adjustment is a must for caregivers--our backs take a beating. The hospital bed also provided the footboard for hanging the motor and controls for the alternating air mattress, which will go a long way towards preventing bed sores, and the hospital bed articulated in ways that the adjustable did not. Trendelenburg and reverse Trendelenburg were very helpful. Using the split king (which was two separate Twin XL frame and mattresses that are pushed together and bridged with a pad) for the first few years allowed me to move one of those beds out to make room for the hospital bed. My "half" was on wheels, so I pushed it against the wall during the day and over next to his bed at night.
 
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