My PALs Fell Friday - Scared and Searching for Next Steps

[my3sunz43]

Our PALs has been living with ALS for almost 8 years --- he is now to the point where is upper body, neck and breathing are the most affected. His legs still supported him but he had to move slowly.

While caring for him on Friday, he got up to go to the bathroom. I walked him in, helped drop his pants and he was standing at the potty and I gave him privacy by leaving the room. While standing outside the bathroom door I heard a 'thud' and knew what happened. We were home alone with his 9 year old daughter. I rushed into the bathroom to find him face down, arms at his side with blood coming out of his head.

He was unable to breath, so I rolled him over and propped him up on my lap while his poor, screaming daughter retrieved the phone so I could dial 911. I was stuck below him propping his head and neck up --- he was wheezing. His BIPAP was in another part of the house hooked up to his wheel chair. Therefore I couldn't help him and screamed for his daughter. The little hero jumped in Dad's chair and drove it into the bathroom - saving her dad's life.

To say that falls are bad is an understatement --- this is a living nightmare. He broke his left clavical, 3 bones in his face (including his cheek bone), and his right wrist. Has stitches over his left eyebrow. Fortunately no brain injury or hip issues.

He was in the hospital Friday night and transferred to a dump of a rehap center allowing us a night of sleep to get our thoughts together on next steps.

Have spoken to our contact at the ALSA - unfortunately most of our options are limited due to insurance (like the dump rehab). He desparately wants to go home, but there is NO way we can do transfers there just yet. Hoyer lift needs to be put in place along with more nursing care.

Not sure what I'm asking for ... are we getting towards the end? Should I have our college sons come home? How do we manage the care he now needs? His little children are terrified to be alone with him now. His wife is stoic but a mess. And while I'm actively a part of their life (btw, he is my first husband --- we are a new age 'brady bunch' family) I'm struggling with my role.

Slept last night without having nightmares reliving the fall over and over ... but I think that was exhaustion. Praying for peace for all of us.

Thank you for listening.

 

[Atsugi]

With such a slow progression, it seems difficult to predict the end. Usually the end involves severe difficulty breathing, pneumonia or such.

My PALS was rapid progression. She lost her legs first, then arms, then torso and neck, and finally breathing was very shallow. The diaphragm muscles were unable to give her a deep breath. So she remained bed bound with only very shallow "autonomous" breathing, and no voluntary deep breaths.

Even that was not the final "end" sign for us. Once the organs began shutting down, her urine turned foggy and her skin turned gray from lack of oxygen.

I hope this experience helps answer your question.

 

[Nikki J]

I am sorry for this. Hopefully you will get through this and then you can adjust to his new needs. Yes it sounds like you need a lift. Somewhat confused here though. You were here in August 2014 with a slightly different username and it sounded as if he was end stage then. When you get a chance perhaps you could fill in the gaps? I don't feel as if I have a clear picture of his overall status. I obviously did not last year!

This is the thread that confused me
https://www.alsforums.com/forum/current-caregivers-cals/26277-scared-end-life-planning.html

 

[my3sunz43]

Last August his breathing took a turn and we thought he wasn't going to make it through the winter ... he's a fighter and somehow was able to rebound. As for my user name --- I lost my password and had to create a new name in order to sign back up had to take out another user name after many tries to reset my password. Wanted to keep my name similar to maintain some of the history on the board.

Apologize for any confusion ... let's just say there are quite a few things going on these days and this damn disease is a roller coaster ride.

Cheryl

 

[my3sunz43]

by the way ... here is my PALs story (will probably go into moderation due to the link):

>>>Sorry, my3sunz43. Fundraising links are not allowed no matter how worthy the cause. --Mike (Atsugi)<<<

 

[Nikki J]

I realized about the user name issue. It sounds like, to answer the question about is this the end that his breathing may be the deciding factor. If he has fair breathing still and he does not get any more complications from the fall he might regroup to a point a little less mobile if you are lucky. Preventing further falls will be paramount as you well know. My sister had a nasty fall a couple of years ago. Not quite as catastrophic but bad. She came back. Then she fractured a vertebrae in her neck and pretty much recovered except for one function that was 98 percent gone. She never regained it but it was going anyway.

 

[my3sunz43]

Nikki and Mike - thank you for your responses. His breathing is already compromised since he required bipap 90% of the time prior to the fall. You never know though ... he bounced back last year and he has been a real slow progrosser so far. Will continue to take things a day at a time. for all other caregivers ... learn from me ... even if your PALs has lower body strength, never let them travel without assistance. I can't begin to describe how haunting the sound of his fall followed by the vision of him lying on the floor, arms to the side with blood pooling by his head is.

 

[lgelb]

Cheryl,
I don't see this as necessarily signaling the end unless he himself loses hope or will to live. And it is not that hard to learn how to use a Hoyer lift (we have many threads on this).

Your local ALSA or MDA chapter likely has a loaner but if you need to order your own (let us know if you need resources for that), you may well swing reimbursement for a power lift even if the policy calls for a manual (in which case you would make up the difference), given the fractures. The doc will need to write a med necessity letter. I would contact or identify a case manager with your plan with whom you can walk through the post-discharge plan in conjunction w/ the discharge planner at the center.

However, transfers and positioning will be more delicate/painful for some time given the nature of his fractures. I would get a home health order for OT assessment for transfers and skilled nursing to monitor the fractures (your doc can write this) and coordinate home discharge w/ the rehab center such that you have a lift and know how to use it, and how to protect his fractures, when he arrives. I would also be prepared to do bed baths/cleaning with wipes while the fractures heal. I don't know how you've handled showers but those are adjustments the OT can help with if you need, for example, to select a shower chair.

But he has progressed slowly on the limb side and as Nikki says, it's really about his breathing; now that he will at least stay closer to his wheelchair (I hope!), he need never be separated from his BiPAP and can use the other 10% if/as he needs to. He could live a year or more even on pretty much 24/7 BiPAP. It is also mental and I don't know where he stands there.

I'm so sorry you are in this scenario, while applauding you for stepping up for your ex for evidently a long period of time. I would encourage all of you to talk and consider what kind of future you see, take stock of your resources, including each other, and plan from there.

 

[my3sunz43]

Thank you! He was in greater spirits yesterday, talking a bit and opening his eyes more. I have contacted our local ASLA and they do believe they have a loaner lift --- will be confirming & picking up today or tomorrow. I also scheduled an appointment for his wife to meet w/ an in home care provider today as he will need 24/7 care at this point & she needs to work to maintain insurance coverage. The unfortunate part, is she doesn't believe insurance will cover that care. I believe he's on medicade. Does anyone have advise I can share with her to find out if/how she can obtain some cost offsets?

 

[Barbie]

Hi Cheryl,

I sort of remember you as well from last year. Try to remember and encourage him that the rehab center is not forever--just until he is healed enough for you guys to care for him. If insurance doesn't cover a hoyer lift I have a manual one that you can have for the cost of shipping, but if he is on Medicaid or medicare they will cover it. (it cost us $12 a month for a year on medicare). Home health care will show you how to use it--very easy and helpful.

It is the breathing that gets them in the end of course, and sometimes you don't see it coming. This disease is hell. I am so glad you are there helping out.

 

[lgelb]

Every State's Medicaid has its own rulebook. He should be eligible for some in-home care esp. in the post-discharge period. He will not be eligible for 24/7 care. The rehab center and the State's Medicaid office should know more. Another important question is whether he is on Medicare also.

I'm a little confused about "maintain insurance coverage" re the wife's work unless you are referring to her coverage, in which case you could remind her that if she loses her employer coverage, she can enroll via her State's exchange in an individual plan and could be eligible for subsidies based on her income.