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All -- My mother is in her late 70's, has no ability to move her legs and has limited use of her arms, which means she has limited strength in her hands and forearms and that's it. Her breathing is okay but below 50 percent. She is only beginning to have trouble swallowing. She lives with her older husband and gets help from day time attendants.

I have two older siblings who are involved in my mother's care. The oldest one, who has a strong personality and is influential but lives abroad, is in complete denial of the diagnosis. She believes that the paralysis is a combination of lumbar nerve root compression, anxiety and a failure to properly do PT exercises. She has advised the caretakers that my mother needs to be encouraged to do things on her own as much as possible (e.g., attendant should not hold the cup for her when she struggles to drink and should have my mother try to push the wheelchair forward even if she can't make it turn corners).

I am concerned about this. This sibling's denial contributed to my mother declining to get a feeding tube. Her breathing levels are now too low to get one. It also led to my mother refusing to switch from a walker to a wheelchair at a point when she clearly needed a wheelchair: she fell trying to walk to the bathroom with the walker and fractured her leg, which landed her in a miserable rehab place for 4 months.

I would like to insist to the caretakers that they help my mother to the maximum extent possible. This is not the time to change my mother's personality and make her less anxious or more inclined to be independent. The key, in my opinion, is to have her be safe, not tire her out, and maximize her time with family and friends. It kills me to see her attendants refuse to help cut up her food even while she is struggling. They are good attendants, but they are just following my oldest sibling's advice.

Has anyone else dealt with a situation like this? Any suggestions on how
to advise the attendants? Some would say that it's up to my mother to push back. But I think that, at times, she takes hope from my oldest sibling's denial. Then she gets upset with the attendant for not helping out more and the lack of help feeds her anxiety and depression.

Note that I am the one child in town with my mother. Other siblings visit for a few days and then return to their homes.
 
You're in a tough place, but you're the sib on the spot. You are spot on that continuation of your sister's dictates will lead to much sorrow by the end of your mom's life, and opportunities wasted. If your local family pays the attendants, they have to answer to you, no? If not, make it so. Tell your mom that you are not going to watch her deteriorate faster than she needs to just because your sister rules unwisely from afar.

Call your sib and walk through the diagnostic paperwork, the symptoms and how they match up, these Forums, conference calls/visits with your mom's docs, whatever you have to to help her believe. At an academic medical center, they may have a social worker with expertise in cases like these. Go as a trio to a counselor together (this denial sounds pathological if she has all the facts). Whatever it takes.

As for the feeding tube, that is very likely still possible in Radiology with an FVC considerably lower than 50%, as you will perhaps have read here already. There are case series with an average FVC of 17%. Is she on BiPAP? For that matter, how does "lumbar radiculopathy" and "anxiety" fit in with impaired respiration even from your sister's perspective? How bizarre. Where is your mom's husband in all this? Does she listen to him? Does he get it?

I feel for you, and you're welcome here to grab a slug of courage any time -- you'll need it twice over, sounds like. But we can't improve things for your mom. Only you can do that.

Best,
Laurie
 
Laurie gives good advice--one way or the other, you need to put an end to this right now. Overexherting will only make things worse for your mom and possible speed her progression. It's cruel.

My heart goes out to you-this is not an easy road, especially when other family members don't understand.
 
I am guessing that lack of assistance will lead to not eating enough and weight loss which can also speed up progression.
 
Hugs Anxious - I am so very sorry to hear of the troubles. Laurie's advice is spot on. I wish I had a magic answer for you. Maybe also show the medical information to the attendants. They should have some medical background and may be willing follow your wishes, as opposed to your sisters, once they read the facts. A good nurse/aide should. You would not be doing anything or asking them for anything that is unacceptable. While Dr.'s are the only ones to take the oath, all medical people are of the "first do no harm" philosphy for the most part.

Hugs,

Sue
 
Hi Felix,

Sorry you are in such a tough spot. A couple of things.

Who has your mother's medical POA? If no one does, that needs to be resolved so directives on her care are clear to everyone involved. Even with the POA in place, if your mother is competent, she directs her care not you or your sibling. The POA speaks for her when she is unable to.

The first time a caregiver refused to help would be the last time they were in my house. Unless your older sibling is your mother's neuro, her advice is only that, advice. I'd make that very clear to the caregivers. They are there to assist your mother whenever and with whatever she asks for so long as she isn't putting herself in harm's way. Regardless of who is paying for the service, it is your mother's right to ask for or refuse any part of that service.

Your mother has already experienced one serious fall. Continuing on on this way is just dangerous and even with the best of intentions, not in the best interest of your mother.

I had similar issues with my PALS family. I hold the POA and after discussing it with him, we told everyone involved in his care. directives came from him or myself. Anyone else who had concerns were referred to the two of us. Ultimately I think they are relieved, now everything they don't like is my fault. Don't care. Like you, I'm the one on site, day after day. If they want to be involved, be involved, not just a quick drive by now and then. It's always easy to offer advice and suggestions when you aren't the one dealing with it every day. They don't have the whole picture.

Talk with your mother first. Find out what she wants, what makes her comfortable and happy. That's your plan. Everything else is just noise. I'm very protective of my PALS wishes even if I don't agree with what he wants. He trusts me to look after things and keep him as comfortable and happy as possible. He has also refused a feeding tube and I respect that choice.

I'm lucky, I probably won't see my PALS family after this is over. You are dealing with siblings who have different ideas of what is best for your mother.

My heart goes out to you. I hope you find a solution that can keep everyone happy.

Paul
 
Thank you all so much for the comments and the support.

Laurie -- I didn't know that a feeding tube was a possibility at such low breathing levels. I will follow up with my mother's neurologist about that. My sense was that 50% was the cutoff. My oldest sibling's denial is quite deep. We have sat with her and gone through the Hopkins and GWU EMGs. I have pointed out the symptoms and threat of denial to taking appropriate safety measures. She still denies the illness. Her view is that the lower extremity symptoms are caused by herniated discs in the lumbar spine. Recent, upper extremity symptoms are the result of inadequate PT in the last couple of months. Breathing and swallowing difficulties are psychological. My siblings and I did not have a very good relationship with my mother growing up; my mother is an extremely anxious person and did make us feel guilty for things that were really the fictional product of her anxiety. So, I see where my oldest sibling is coming from on a theoretical level. I can see why she, in particular, would not want my mother to have a terminal illness that gets her a lot of attention. But the evidence is so clear as to the illness in this case. My view is that the priority should be comfort and safety.

Nuts and Soonerwife -- yes, I'm concerned about speeding up progression. Right now, the thing that is of concern is my mother overdoing PT in the hopes that it will delay or eliminate atrophy. The feeding part will potentially be serious in the future. Right now, my mother has no appetite. She is getting her nutrition through protein shakes and small, frequent bites of food. But doesn't it raise the risk of her choking if she's struggling to keep her cup near her mouth? The attendant is a caring person. However, I hate to see my mother struggle with utensils and almost drop her cup -- the attendant, who is not a trained professional, really wants to push her to be independent. The oldest sibling has talked extensively to her about this. The crazy thing is that, much of the time, my mother actually likes the tough love approach because it gives her hope.

Narrow-minded -- The weekday attendant does not have a medical background but is one of the most efficient and fast learners who has helped my mother. She is also the most caring (she thinks that what she's doing is in my mother's best interest). She cooks, cleans and is proactive about getting stuff for my mother. Other attendants who have medical training tend to do far less (will only cook basic food, don't really talk to my mother, won't push her wheelchair down the street because of agency "liability" issues). So, there is a tradeoff.

Paul -- yes, I have the durable POA. But that hasn't been triggered yet. And family dynamics seem to survive legal arrangements. Folks can come in from out of town and create direct relationships and trouble (even while contributing positively in some ways). Right now, given that my mother can talk and has complete intellectual capacity, I am deferring to her preferences. But she is vulnerable to overzealous optimism and fear of things like feeding tubes. I probably should have been tougher in advising on the feeding tube. But the "starvation vs. suffocation" arguments are extremely tough to have, particularly with an anxious person, and also would play into the oldest sibling's argument that there is too much focus on future deterioration and not on maximizing the present.

I'd love any further input.

Thanks!
 
1) You don't have to work with an agency; you can hire your own caregivers, who will not have ludicrous restrictions like not pushing a wheelchair.

2) Yes, definitely connect with neuro re a RIG (that is the term for a feeding tube placed in radiology)

3) It's not suffocation vs. starvation -- in your mom's case, it's probably both at the same time if nothing changes, and that won't be pretty -- sorry to be blunt. I'm also sorry to say that probably nothing will change if you don't make that clear to your mom, who is the most affected here. Show her this page if you like, which only says that you love her and your sib is sadly deluded in a harmful way.

Best,
Laurie
 
My father was in denial and mother who is the one with ALS was still in denial. It was until it was absolutely necessary to have a feeding tube that it was done. She can see know what a help it is to get the medications down that they choke getting down or even just a sip of water. Its hard to make someone face the reality of it. I still don't want to as a daughter but I knew how much easier it would make medications and getting the nutrients and hydration her body so badly needed. I pray they see the emergent need for it. It was a simple procedure and they didn't even fully put her under due to her condition and she tolerated it well. There is so little knowledge of this disease and its hard to accept. God Bless You All
 
PALS can refuse peg and breathing assistance and not 'die of starvation or suffocation'. Well maybe not exactly true but having a peg or bipap does not mean they are kept fully fed and breathing perfectly to the end either.

I advocate both peg and bipap, but I also know that my husband had a peg but refused feeds more than he took them and still ate a little by mouth and suffered an aspiration pneumonia that signalled 'the beginning of the end'. It was 4 weeks after this that he passed.

He totally refused bipap.

He had a very peaceful death at home. He passed because the muscles supporting his ability to breathe declined and failed. I would never describe anything that he went through as 'suffocation' as though it could have been avoided. I had 2 very close friends who were PALS here in my small country town who both used bipap and had far more traumatic deaths so far as their breathing declined. Mostly this was due to how their palliative care was handled in general.

Maybe you could see your main job as the child on the frontline being to advocate directly to your mum about her choices, then to uphold what she wants as it is her choice.

The great thing about talking here is that you will get many options and opinions. I know sometimes that's a little confusing, but this disease is really quite individual. We don't even all agree on every strategy here, but then what works for one person does not always work for another.
 
It is a tautology that BiPAP doesn't prevent respiratory failure in ALS. But it does prevent a great deal of suffering for as many months or years that breathing is suboptimal without it. I was being literal about suffocation, but it need not entail suffering.

It is also true that a feeding tube doesn't prevent malnutrition, since some people don't tolerate it well. But managed properly, it saves considerable choking, aspiration and pneumonia for as many months or years as food and drink are impossible without it, if someone wants to go on living past the point of needing one.

So we can say that skipping either the BiPAP or tube, to the extent that they are replacing lost function, will increase the body's workload and therefore suffering, before the end is reached.

At the end of life, PALS who experience respiratory impairment despite all available respiratory support or having chosen to opt out, lose the desire for food, however administered. Tillie makes a good point that it is the overall care and family plan that is most important to a peaceful passing.
 
We can all expound here about yeah or ney for a PEG, a Bipap, a vent, a trach. What kind of suffering your PALS may or may not have based upon decisions regarding all of those. The very hardest part of this disease is that it hits every PAL differently. In Tillie's case it was fast and furious, in others it's slow, or slower. Each PALS makes their decisions for what they do for all different kinds of reasons.

The other thing is no matter the decision they make, they still follow a path unique to them. My Brian chose to vent, he's been so for 6.5 years. There are things I know he would not have had to go through, had he not made that decision. He was still up, going to work in his PWC the day he went in. His Dr. had warned us that time was extremely limited if he chose not to vent. Told me that he could go at any time. After he was vented, he never set foot or wheelchair if you will, back into our shop. I truly believe that he would have gone, still doing what he loved if he had not decided to vent. I know he would not be here today. He would not have been confined to his bed, save maybe a short week or two. He would still have movement of his upper extremities, he was still talking, he would have gone still being able to talk. He has lost so much over the past 6.5 years. But that is his story and his alone.

Diane on the other hand has had her trach much longer and still works and gets around in her chair. That is her story.

No one can predict the future or what we fill face based upon the choices that are made. It makes me cry at times to see what has become of his body. Yes, I still have him with me, but most times that thought does not bring me comfort because to me he is struggling. To him, however he doesn't see it that way.

All we can do is respect our PALS wishes to the fullest. But we can make sure those choices are made with full information, or at least as infomed as possible.

Hugs to all as we face unknown futures and choices that we hope are the right ones.

Sue
 
A peg or rig does allow for easier administration of medicine if that need arises. My husband had one put in for just that purpose. He only used it for feeding maybe 6 times.

I would kindly suggest your local als social worker or one from clinic have a frank discussion with your sibling. Frankly if they dont live it with you, theyntruly dont get what is happening. I asked my husband each time a decision needed to be made, what he wanted to do. I provided an ear, soundingw board, and information. Then he made his choice. His siblings lived in denial and wouldnt tell me when he fell. One wrenched his back badly trying to get my husband up and my husband ended up sore and bruised.

Just remember who uou are there for...your mom. Let her make informed decisions and talk with her now about what those decisions are.
 
Sue that was so beautifully said!

It is the reason I totally advocated for what Chris wanted rather than the choices I wanted him to make. I could have taken over and made choices for him, but there was never a guarantee my choices would have made his time left better or even longer. Had my choices made his life longer but even more miserable had that been possible, I would really find that hard to live with now. But because they were his choices, well that gives me a lot now as it was so much his journey.

There are some basics that are fairly true (eg you can safely put fluids and meds into a person through a peg), but they still don't guarantee as much as we would like.

How we wish there were standard answers that would give standard results so we could cling to something solid!
 
Thank you for all the input and perspective. It's tough to be frank with my mother given the denial all around me. I've learned that denial is contagious.

Thank you for all the information about feeding tubes. I had no idea that a vent could provide an extra 6 plus years of life. At age 79, my mother might not want that and I can now advise on the point when the time arises.

I'm thinking now that the best thing I can do is to get the attendant, who is in denial, some strong advice on what she should and should not do for my mother. Does anyone know whether it's possible to have a nurse shadow her for 12 hours and advise on what the attendant should be doing (e.g., transferring is not safe so hoyer lift needed; or must help with tilting cup because of choking risk)? How much would that cost? Any services that you guys know of. I guess I could contact the ALS social worker, but I get more practical advice on this forum!!
 
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