What to expect during late stages?

[firefly34]

Hello,

I made a post a few months ago suspecting my Dad had ALS. Six months ago he was up walking, doing perfectly fine. It has been a steady decline to this point, and we have waded through rehab facilities and hospitals like they were hotels.

My Dad was finally transferred to UAB Hospital after developing breathing difficulties. He is currently on a ventilator and feeding tube. The neurologist said the whole team suspects whatever this is to be ALS or MMN (Multifocal Motor Neuoropathy). He said he sees some signs that this is not ALS, but you and I both know this is an uncommon disease that is different for every soul it touches.

We believe it will be ALS. I am my Dad’s sole caregiver and I also have been able to hold a full-time job because this has moved so rapidly. I’m wondering if someone can tell me what to expect in late stages. If he has already advanced to breathing difficulties, I know the prognosis is not good.

When I say “what to expect,” I don’t mean symptom-wise. How are ALS patients cared for? Are there special facilities where they are sent? Are they going to dump him from the hospital and make me take him back home? Everything is a blur right now.

If there are any other family members of people who have has ALS that could offer any input, I would greatly appreciate it.

 

[lgelb]

Firefly,

People with ALS (PALS) are generally cared for, and die, at home, including those who have breathing support and/or a feeding tube. They most often use a wheelchair and therefore need an accessible home that a wheelchair can enter/exit safely (which may require a ramp), turn and navigate in, though not all rooms may be accessible.

Their caregivers learn how to use the wheelchair, feeding tube, breathing support and patient lift, among other equipment. It sounds like a lot and is, but part of what we do here is help caregivers (CALS) "fill in the blanks" of training and provide tips and tricks. I would expect an order for an OT and/or PT training you at home/helping with home adaptation once he is discharged. If that is not mentioned, ask.

Other equipment besides the breathing machine (BiPAP) and feeding tube that they typically use includes a floor (most common) or ceiling lift to transfer between wheelchair and bed, that is also used for toileting; a hospital bed that provides more comfortable positioning and works with the lift; a shower/commode chair if they are able to tolerate that position, for showers and/or toileting.

It is important to understand whether he has a tracheotomy or not. "Ventilator" is a general term that may mean he has a mask connected by a hose to a machine that provides air, all or part of the time, which most PALS ultimately have, or it may mean that he has a tube in his throat (the trach) providing the air, without a mask. The latter requires more care and forethought in taking him home.

I am puzzled as to why your dad does not have a diagnosis yet and what's going on in the hospital. Do you have a copy of the EMG report that you could post? What is the current plan of care? Is his breathing/oxygenation stable? Do you know anything about his CO2 level?

You seem to be lacking critical information at this stage. Your question references "late stages" and that may be true, but I would speak honestly with the team about his decline, care, diagnosis and his prognosis. They will be guided by how frank you encourage them to be.

Best,
Laurie

 

[Atsugi]

The diagnosis matters a lot. ALS is treated quite differently than other diseases and the complications along the way can be quite different than other diseases.


That's why the EMG and report are important to see if you don't have a solid DX yet.


If you haven't already, get the paperwork done. Advanced Directives, Will, Estate Plan, Health Care Power of Attorney, etc. Google Five Wishes for a guide.


Did he serve in the military at all. Makes a difference.

 

[firefly34]

Hello both,

Thank you for your replies. We still have no official diagnosis. The neuro said he wants to rule everything out before making that call, though it gets closer everyday. This has been a fairly rapid process.

I said “late stages” because he has already reached the point where he is unable to move any of his limbs independently, save for some movement in his hands and neck. The breathing tube is down his throat with no mask. He is alternating in and out of consciousness and trying to come to terms with what is happening.

It has gone so quickly that we were not prepared.

We have started discussions about
the paperwork.

Yes, my father did serve in the military.

 

[Atsugi]

Yes, my father did serve in the military.

VA benefits are second to none.

A veteran with ALS can get a lot of help for him and his survivors.
Is he getting a check from the VA (direct deposit each month? This is to ask if he already has file at the VA benefits office, or perhaps he is "rated" by the VA for some percentage of service-connected disability?


This can be important to all the survivors as well as the veteran, so I suggest looking into this quickly. Do you have his DD-214 discharge paper from the last time he was discharged from the service? Everyone gets one on the day they leave any military, and it is what I call a "million-dollar paper" more important than a birth certificate.

 

[mrsharris]

my dad has ALS and also presented with respiratory onset. (drastic weight loss and foot drop were his initial symptoms and he was diagnosed in May 2017). He lives at home with my mam as his primary carer and that's where he will remain. my brother and i take turns to look after him 2 days a week to give my mam some respite. Currently he is in a wheelchair but can still stand to transfer from chair to bed or tp go to the bathroom but we have already got some lifts and transfer boards ready to use when the time comes.
My dad is lucky enough that he can still speak relatively clearly, he can still text and use his phone he can still swallow most foods and since he got the motorised wheelchair his quality of life is great they go on lots of trips and holidays and we are trying to make the best of the time we have with him. My advice is link in with paliative care and your local ALS support group they will provide invaluable information and support. Its not the life that Anyone would choose but with the right support people can be "living with als" as opposed to "dying from als"

 

[Jhettinger]

Please follow advice of ATSUGI regarding VA SUPPORT. I use ATLANTA VA,
There is good support for VA in dollars and equipment. You need an ALS Diagnosis from your dr, or a VA dr.
The VA DOES NOT TRUST DX FROM CIVILIAN DRs. You must get this started as soon as possible. If your dr is hesitant about
an ALS Dx, get a second opinion. Do not let the VA put you off with your initial appt, tell them it is ALS. KEEP GOOD RECORDS
AND GET A WRITTEN DIAGNOSIS.

 

[MVFinVA]

We had no problem with a civilian doctor's diagnosis of my husband's ALS. The VA approved the disability claim within a week of diagnosis. My husband had two diagnosis, with the confirming diagnosis being from the University of Virginia ALS Clinic.

We got help from the Paralyzed Veterans of America representative. She assisted with the forms, walked it to the proper office at the Regional VA and the determination was made 7 days later.

 

[Statius@]

My diagnosis fm Mayo was accepted by the VA readily (with help from PVA). I've not ever seen a VA neurologist.

 

[DaChief]

My diagnosis fm Mayo was accepted by the VA readily (with help from PVA). I've not ever seen a VA neurologist.

Same experience I had.

 

[chally]

PVA. Now! Best thing ya can do

 

[DaChief]

PVA. Now! Best thing ya can do

They had my back for sure!

 

[billybob]

Same experience I had.

Ditto. My diagnosis was made @ University of Florida Health/Shands in Gainesville and immediately accepted by the VA with a DBQ form completed by my neurologist. The PVA in Lake City, Florida was outstanding in getting benefits in place within 7 days. May I take a moment to commend Mr. Ernest Hill, regional PVA North Florida/Georgia. Outstanding man! He was actually present at my first VA appointment at the Malcom Randall VAMC in Gainesville.