Post hospital Rehab?

GXTrex

Distinguished member
Joined
Dec 2, 2020
Messages
128
Reason
Loved one DX
Diagnosis
12/2020
Country
US
State
NY
City
Long Island
My dad should hopefully come out of the hospital in a few days after his uti/pneumonia is treated. It made him extremely weak, much worse than his baseline beforehand. The hospital social worker said the hospital doctor recommends an inpatient rehab center. Is this a good idea with ALS? I know too much exercise isnt good for him, but what about some physical therapy and occupational therapy to recover from an illness? Anything I should be aware of beforehand?
 

lgelb

Moderator
Forum Supporter
Joined
Nov 5, 2009
Messages
10,387
Reason
Lost a loved one
Diagnosis
00/0000
Country
US
State
WA
City
Seattle
Unless they can demonstrate expertise/success in ALS specifically, I would bring him home, honestly, if you could handle it. He would qualify for in-home PT and OT, and possibly some hours of skilled nursing, under Medicare, with the right doctor's order. Then you could pick up from there on range of motion exercises, etc. to try to return his joints to baseline function. Stamina/energy should build with proper nutrition and rest -- of which there is often more at home, while trying to build his walking and general activity back up.

It is common for a hospitalist to recommend a post-acute facility when someone has lost strength, but the realities of ALS are not generally appreciated by hospitalists because it is not something they encounter that often.

Infectious diseases such as Covid, and the spread of antibiotic-resistant bacteria such as MRSA and worse, is high in rehab facilities. I would also be concerned that it is very easy for a lab tech or transfer aide to pull too hard on a joint, etc. and cause permanent damage, when ALS is not fully appreciated by everyone on staff. Granted, these risks exist in any hospital, but in close quarters, with staff who can moonlight, it can be higher still. That is why Covid ran rampant through nursing homes.

So I guess I would want to see more evidence of likely benefit before considering the proposed transfer.
 

Nikki J

Moderator
Joined
Mar 22, 2012
Messages
10,820
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
City
Boston
The question is really can he be managed at home ? I think he lives with his wife ( your mom) who has some challenges of her own. How available are you and your sibling to respond to issues? If it can be done safely I agree home is best
 

GXTrex

Distinguished member
Joined
Dec 2, 2020
Messages
128
Reason
Loved one DX
Diagnosis
12/2020
Country
US
State
NY
City
Long Island
I understand all of your points. Nikki you are correct he lives with his wife and she struggles to use the feeding tube. We would like to get another feeding tube so she can practice using it without hurting him.

We are working on getting a wheelchair and eye gaze but cannot until he is out of the hospital due to Medicare I think. We have no means to safely transfer him at all either as he was fully mobile a week ago.

We are not set up to care for him at home currently as we figured these declines would be a ways out and would have progressive along the way to see how it's going and make changes.

I will speak to them in advance regarding als and to go slowly and plenty of rest. Is there anything else I should mention in advance? I know at home would be best but i don't think that's possible in his current state. Has anyone on here used a rehab facility?
 

lgelb

Moderator
Forum Supporter
Joined
Nov 5, 2009
Messages
10,387
Reason
Lost a loved one
Diagnosis
00/0000
Country
US
State
WA
City
Seattle
You can ask about a loaner Hoyer-style lift from ALSA regardless of where he is, or buy one, often cheaper with cash, so you are ready whenever he gets home. Sometimes they also have loaner wheelchairs. You can also get the wheelchair evaluation process started, potentially, at least by selecting a vendor and having a discussion about models given the home setting. It is when the claim is adjudicated for reimbursement that he has to be in a non-hospital setting.
 
Last edited:

Nikki J

Moderator
Joined
Mar 22, 2012
Messages
10,820
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
City
Boston
speak directly to the facility therapists preferably be there while he is having his assessments. Be clear on what his limits were prior and that while he hopefully can regain a good part of what was lost due to acute illness he can not regain what was lost to ALS. Befriend the hospital social worker and the facility one if he goes to one
 

jonico

Distinguished member
Forum Supporter
Joined
Feb 21, 2017
Messages
155
Reason
Lost a loved one
Diagnosis
12/2014
Country
US
State
NY
City
Central
Excellent points made by Nikki and Laurie! Home is best unless you can find a high caliber Rehabilitation Hospital. There is only one in our area, and our insurance didn't include it as an option the one time we needed to go there. For us, that was when my wife got her tracheostomy. We didn't need it after the g-tube surgery. As I alluded to in your other thread, this was one of several times I had to advocate hard... all the way up to the Chief Medical Officer's office to get approval from the insurance company for Nic to rehab there. This hospital is an excellent, top tier rehab hospital (hence the insurance company not wanting to cover it, I gather). Still, to Nikki's and Laurie's points you never know what you are going to get as far as individual staff are concerned. I was there almost all the time during my wife's stay. I slept on an extra bed they placed in the room for me every night. I supervised all PT and OT visits... and we had some great ones, learning a lot of ALS appropriate stretches, and range of motion work that we used every day in the following years.

Bottom line? If you find the right place and can keep an eye on things, the rehab hospital can be optimal, especially given all the lack of preparedness/intermediary challenges you and your Mom are facing due to not expecting these complications with your Dad. But it has to be a high caliber place, you have to be mindful of Covid surging, and someone has to be there almost all the time to keep a close eye. Your an amazing son...Jon
 

[email protected]

Distinguished member
Joined
Jan 3, 2016
Messages
299
Reason
PALS
Diagnosis
11/2015
Country
US
State
Iowa
City
Iowa City
I spent 3 weeks in a rehab center after my pulmonary embolism after 3 days in the hospital. Both were VA facilities on the same campus. The rehab staff were familiar with ALS, tho not expert, and I regained a lot of lost function with PT and OT. It was worthwhile but I expect it depends on the quality of the facility and its staff.

Ed
 

GXTrex

Distinguished member
Joined
Dec 2, 2020
Messages
128
Reason
Loved one DX
Diagnosis
12/2020
Country
US
State
NY
City
Long Island
Update for those interested/for future knowledge:

My dad's rehab went pretty well. He was in the rehab facility for about 6 weeks. By the end of it, he could walk short distances on his own with supervision or a walker, and was fairly understandable verbally. He was in the process of being discharged back home when one night he tried to walk to his wheelchair on his own. It was out in the hallway instead of next to his bed as it should have been. He should have used the call button to call for help but he tried to do it himself and fell.

He went to the SICU at a nearby hospital for 3 days for a small brain hemorrhage. Luckily it did not increase in size so he does not need surgery. Today he is going back to the rehab facility to be re-evaluated.

He made good progress and now he has to do it again it is so not fair. Everyone please do all you can to avoid falls. Go above and beyond with precaution it isn't worth the risk!
 

affected

Guru status reached
Joined
Apr 26, 2013
Messages
13,596
Reason
Lost a loved one
Diagnosis
05/2013
Country
OZ
State
AU
City
lala land
Sorry to hear dad had a fall, it truly can be so dangerous and life changing.
 
Top