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New member
Aug 18, 2011
Hey all,

Have only posted once or twice before. I'm the caregiver for my partner, Mike, who has been diagnosed since August 2011. He uses a power chair and a feeding tube (although he's fortunately still able to enjoy a beer every night), a sip and puff respirator as he needs, and we use a transfer/shower chair to bathe and toilet. He's had significant decline in the years since diagnosis, but we are thankful that he's still talking a bit (he has a tobii for when that's not the case), and that he's still in the house with me and our three wonderful pets.

However we've reached a point where breathing overnight has started to become more difficult. We give him alprazolam as the doctor has instructed, which does seem to reduce some of his anxiety about it. But we cannot use the bipap that has been prescribed because Mike says that he can't exhale, and then his breath gets "caught" inside of him. Too, he has a severe gag reflex, to the point where use of breathing machines with a mask make him throw up, because he can't take the mask off himself and his reflex is triggered. He's on the highest possible dose of baclofen that we're comfortable with, but it doesn't seem to help. At the clinic, we've been told they've never seen a patient with such severe reflexes.

The problem is this: my husband is now refusing oxygen. At night I've been putting oxygen on him (via nasal cannula) but now he says the oxygen is preventing him from being able to breathe. I know he has a strange/unusual set of breathing difficulties (the gag reflex plus his inability to exhale) but I can't understand the mechanics of his claim. I don't want to disbelieve him, because I've seen doctors and nurses scoff at his very real, very true symptoms, but I also just don't understand. Complicating matters is his reticence to accept new adaptive/assistive equipment, which is no doubt not an uncommon PALS/CALS tension, as even I can see from my occasional wandering onto this forum. (And surely I'd be the same, all of us likely would, as it is really, really difficult to accept the use of a device that sometimes seems only to draw focus on the loss in ability rather than to adequately substitute or replace the loss.)

I'm not really sure what to do. He can't use the bipap, claims the sip and puff is useless or just dries him out blowing on him all night, won't even use a cervical pillow even though his head slides uncomfortably to a very acute angle all night and he has recurrent neck issues, yet at night he can't breathe and it causes him to panic. Despite my reluctance to accept it, I know this issue is only going to get worse, and I 'm not sure how to deal with his refusal of all assistive devices/equipment. I can't force him to do any of this, it's simply not possible to do to a paralyzed, panicking person who gags and can't breathe when they cry (one of the worst things to witness—and something I'm sure many of you have experienced with your own wonderful PALS—my heart just breaks every time).

I am really tempted at this point to put him into the VA, where staff checks on patients every 30 min overnight. We are on the waiting list and our name comes up periodically, and we always say no, we're not ready, because he's only 35 and we want him at home as long as it's feasible. But I am in really deep and can feel my head going underwater, and the lack of sleep is just overwhelming. Luckily I have lots of help (nearly 8 hours 6 days a week!) but nonetheless I am approaching a breaking point.

Is it possible that we are seeing a decline in his capacity to do complex reasoning? I know frontal lobe degeneration can affect one's ability to make decisions, but there are also very real reasons why much of this equipment is not effective on Mike.

I just don't know what to do, and he's not going to suddenly decide to just go into the VA unless I prompt him. I'm so scared of all the changes that would cause, but wonder if I'm letting my fears and guilt about not being adequate to deal with his needs feed my feelings.

Have any of you moved your PALS to skilled care, and how did it work for you? Was the care there superior is some ways and worse in others? And how on earth do you deal with your PALS refusing necessary medical intervention? Staying up all night and talking him through just doesn't cut it when he can't breathe and is refusing (what seems to me to be) very real physical support that could alleviate some of the issue.

Why is he on oxygen? That is usually contraindicated in ALS and using it without a BiPAP is even worse. Have you tried different masks (I can only tolerate the nasal pillow and need to keep the humidity rather high so I don't dry out.)

My guess is that his BiPap is a Trilogy? Have you tried adjusting the settings. That is usually the problem.

Many skilled facilities have little or no understanding of ALS.

The first thing I would do is find out why he was prescribed oxygen. The second thing I would do is adjust the settings of the BiPap to make him comfortable. Then I would find a mask that is more comfortable. You might get very big improvements in his comfort level by doing these things.

I'm waiting for Laurie to post. She is on Seattle time but she will probably see this a bit later. She can give you sound advice on the breathing aspect. Please check back later tonight because others will weigh in and help you.
Hi, Liz! I also post infrequently, but this is a great forum for helping caregivers not feel crazy. So sorry for what you're going through! We have not considered skilled care at this point, but I face the resistance to adaptations (including hiring caregiving help) on a daily basis. He chokes and splutters through most meals -- Heimlich last week, 16 year old daughter who will definitely spend some time in therapy someday talking about her experience of "family dinner time." But will not discuss a feeding tube, says Thick-it it "gross." He's cold, but says it's a special type of "inside cold" that will not respond to putting on a sweater -- and therefore prefers that we keep the apartment at sauna temperatures. Requires me to help him pee, and will not consider a condom cathether (will not even try it) if I have to be out for awhile -- just doesn't drink any fluids till I'm back! Crazy making.

Despite my flip tone, I do appreciate that someone who is losing every function, bit by bit, wants to retain as much control as possible... But that said, we all have to find a balance that is achievable. That will be different for everyone -- I have decided not to go to battle over the pee issue, but did tell him that I needed some help and would be hiring someone with or without his support or input. And I have to say I'm often pleasantly surprised after a change is made that he comes to accept it pretty quickly. Yuck. Such a tough, tough disease. Anyway, just remember that it's ok for you to set boundaries, to say "I know you'd like this but I can't..." or whatever, and to stick to your guns.

I think bringing up the skilled care move during a non-crisis time is a good approach. (Just came off a horrible, sleepless night of mucus myself -- definitely not a good time to discuss anything!) From my experience with these places (as a hospice nurse), there will be upsides and downsides, and a lot of it has to do with the kind of place that is available to you -- here in NYC, it's slim pickins -- but I have a relative in a nursing home in PA that feels clean, warm, and loving. And I do believe that having the bulk of the care giving tasks off your plate could allow you to spend some more meaningful and pleasant time together. At least that's what I'm told :).

All the best as you face these challenges!
And will second Kim's opinion on the oxygen! ALS patients don't have trouble oxygenating because their lungs aren't working well (which is the main reason to use oxygen) -- they just can't get the air in. So not sure why oxygen would have been prescribed, unless he has another, pre-existing respiratory issue?

I can only second everything that Kim said. There are less invasive nasal masks that should not cause the gag reflex. The settings can be adjusted so his breath is not "caught." He should not be on oxygen, especially unopposed (no BiPAP). Sip and puff doesn't work for everyone and certainly not long-term. I don't think tranferring him needs to be considered unless/until the optimal setup has been proven ineffective, and honestly, even then, there would be no "superiority" in terms of the issues you describe.

I will pm you with my email so you can send me the current settings/issues if you'd like.

Could not find the term "sip and puff" in the acronyms and terms definitions. Are there other sources I can use for these terms?
It is not an acronym. It is a type of technology. Type sip and puff into google you should get full explanations
Liz, do you have skilled help, or a home health aide?

It might be time to contact the social worker or your guy's PCP and explain that you are at the breaking point. If more help will keep him at home, they will provide it.

Ditto what everyone has said about NO oxygen without the bipap, and then only if his o2 is falling. I'm told to bleed in a small amount when my husband's sat hits 91. We used to rotate between four different masks/nasal pillows (trached and vented last week). As my husband lost the ability to move his arms, he felt increasingly trapped in the complete face mask that he loved for a long time.

I so understand the difficulty of conceding to a pals wishes when you know the choice is not going to make things better. They must have control over something. A fabulous RT yesterday explained to my husband that he controls his breathing (he is over breathing the vent) so he can prevent shortness of breath by not panicking. It was the smartest thing I've heard said to him in a long time. Whatever the issue, our PALS must have control over some set of choices. Providing a number of good alternatives, if they are any, is a smart move.

When you talk about the waiting list fo the VA, do you mean a contracted facility, or the VA hospital? Perhaps some respite is in order. I've been told that if we elect respite in the contracted facility, the VA will provide an aide to sit with my husband all the time. Perhaps, if the facility knows ALS, that would be a good way to have them get him settled down and find a combination of masks and settings that will work. My guy loves and trusts me, but it's always better to have someone else introduce new ideas and changes...

Back to the o2/bipap. Is the VA hospital providing them, or are they coming from a home health company? Have you asked to have the settings checked on the Bipap? We make periodic changes as things progress. As Laurie often says, it's not a set and leave it kind of thing....

I'm glad you've asked the questions. This forum has been my best source of information over the past four years.

Hi All,

Thanks for the many responses and for all the encouragement. We've just spent four nights in the ICU after a battle with a respiratory infection. He is back home and we are scheduled to move him into the skilled nursing facility at the VA tomorrow morning, so our nerves are frayed. I'm looking forward to getting him established and to a new normal for him.

To answer some of your questions, we have had extensive in-home help, but unfortunately it is just not enough. Even on the seemingly generous monthly allowance from the VA, we cannot cover someone to be here 24/7, and I can no longer transfer him myself. Bipap is not possible for him because of his gag reflex. Unfortunately we cannot use the cough assist for the same reason. Important to note that these are not arbitrary decisions, as we understand the benefits of both devices are invaluable. Rather this conclusion has been reached after years of struggle and back-and-forth with two pulmonologists, multiple respiratory therapists, and lots of arguing (lmao). We periodically trial both machines to see if his spasticity has changed to allow it, but so far it's still a no-go, despite 90 mg of baclofen every day. In fact, he can't even wear a t-shirt without a v-neck because it causes him to gag, choke and vomit. Too, we have him scheduled to see the pulmonologist once he is transitioned into the VA to once again try everything and see if we can make specifically the bipap work for him, because things change all the time and we remain hopeful that on-hand medical professionals with access in space and time to both him and his records/history will be able to adjust settings and get him to a point where this kind of helpful therapy is possible.

His extreme spasticity and inability to be laid flat prevents me from being able to safely transfer him anymore, and because we do not feel comfortable with him being "stuck" anywhere (armchair, where he sleeps, as I can no longer transfer him in and out of his bed, or his power wheelchair, where he is most comfortable and mobile). He is not one to stay in bed all day and it was absolute torture for him to be in a hospital bed for the last four days, poor guy.

Anyway, feeling very lucky to have access to the VA, which is considered the top facility in the area, and where he will be well-cared for, and will have myself and his parents every day to fill in gaps, communicate needs, etc. etc. In fact, they have even indicated that a continuation of his blended food diet should be possible, as he does not tolerate formula well. He will have access to physical therapy every day. An aide to help him in addition to the nurses. A doctor available 24 hours a day. A wheelchair clinic in the same building. Hospice services and counseling. Socialization. Access to speech therapy on site, in fact every week day if he so chooses. Dental services if they are needed. Mental health professionals. Volunteers, therapy dogs, a harpist, access to the outside, etc.

I have been home with him for about 6 years now. My interest in is sustaining him, but also I need to be sustained. It is no longer a good situation in the house, so I am looking forward to changes and hopeful that (once we get everyone up to speed on his needs, desires, and body quirks) this will be a very positive new normal, and that he can go for at least another 7 years if not way longer, with support that doesn't tire, and that isn't expected to continuously do the impossible. Caregiving is valuable and rewarding work but extreme self-sacrifice is not healthy and not sustainable for any of us. I am not a believer in martyrdom at the expense of my PALS, I am interested in sustaining him and believe an environment where he has continual access to professional around-the-clock medical care is the best environment for him. He has simply outgrown the house, as much grief, sadness, guilt, and anxiety as that gives me. I have known this for the last two years but still continued on, and I am just thankful that new possibilities exist for him, as painful as it all is. I am sure we will have our problems at the VA, but I look forward to navigating the next stage of his care with a skilled support team and on-hand resources that will improve his quality of life.

Wow, Liz, thank you for your detailed account!
You more than deserve more than a break and I'm glad you found the VA facility. (The harpist had my laughing!) You have put together very good arguments, probably not only to convince your husband and others but foremost yourself.
Self-sacrifice can only go so far, two years over the breaking point sound brave. I'm not a great advocate of bravery.
Take care of yourself! Lots of strength for the transition period!
There is a recent thread talking about Biphasic Cuirass Ventiliation..... something you might just look into... sounds different, but..... ?
Yes, Liz...thanks so much. I so empathize with the difficult decision-making -- so hard to confront the realities that sometimes the solutions that exist just won't work for certain individuals. But the VA option sounds really, really great -- of course there will be hurdles, and sometimes "different hurdles" feel scarier to the hurdles we're familiar with -- but on the whole, sounds like a great option to get him much-needed care and to allow you to spend more time being a loved one instead of trying to do the impossible.

Please do check out the BCV -- don't know why I did not think of it when you described your situation in an earlier post. It sounds like it might be ideal for your husband, as it does not touch the face/neck area at all. I posted recently about the upsides and downsides. Please feel free to message me privately -- I am happy to provide the contact info from the rep who was very helpful to us. She covers NYC, but could certainly point you to a local rep, I think. Or you could go to the vendor (Hayek medical) site and call the 800 number -- that's how I found our rep.

And I agree 100% that being a martyr (or trying to impersonate one -- don't think anyone actually jumps naturally into that role) is not useful. Had a friend tell me the other day, when I was talking over the expected blow-back when I decide we need more care-giving hours, "You know, you don't always have to say 'I can't.' It's perfectly OK for you to say, 'I'm not willing...'" I sort of knew this on some level, but her comment shed some light on how hard it is to feel OK about saying "I want" or "I choose" when caring for someone who faces enormous and ever-increasing constraints on what they might want or choose to do. (And is quite vocal about issuing reminders if I appear to forget this, lol).

Best of luck with the transition!
Understanding that you have had access to various consultants, Liz, I suspect they may have tried different masks more often than different pressure, humidification or temperature settings. Let me know if you ever want to brainstorm the options, like a lower IPAP and more sensitive trigger to reduce "need" to exhale and likelihood of gagging.

I hope the transition to the facility is going well. I also meant to ask, can you not transfer him even using a Hoyer lift? Many of us have had to use those solo. Just wanted to clarify for newbies.

Many PALS, like Mike, find pressure at the neck uncomfortable and cannot wear crew necks or high collars. My husband for many years required sedation for imaging. He used a nylon Circadiance mask, which does not press against the nose or mouth.

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Good luck with the facility!

I'm just going to throw this out there...

The "no oxygen for pALS" is bullshit, scare tactics.

The correct statement should be "no oxygen for pALS NOT ON BiPAP, and barring other issues such as COPD that REQUIRE oxygen"

I am on, and have been for YEARS, 2 litre per minute (lpm) of O2 for overnight only.

Anyone can handle 2lpm , especially when on BiPAP. I live at high altitude.

I cannot count the times people have preached or screeched at me that oxygen kills pALS. Bullshit, I may smell but I'm not dead!

You simply have to be knowledgeable.

As I think we specified, it's "unopposed oxygen" (without BiPAP) that's the greatest danger.

But I would also stand by the statement that most PALS with optimal BiPAP shouldn't have supplemental O2 and believe you would agree. The abstract I linked to in another thread showed clearly that even low flow risks greater CO2 buildup.

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