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Prohobo

Member
Joined
Mar 9, 2015
Messages
18
Reason
Loved one DX
Diagnosis
03/2015
Country
US
State
FL
City
Sarasota
I am in an awkward situation and I really don't know what to do.

I am the POA for my mother, who at this point can NOT speak and barely moves.

In October 2014 my mother's speech slurred and she had a funny gait (walk) - she had previously been dancing and swimming - so this was rather concerning.

By March of 2015 we have seen 3 neurologist on this rather bumpy road of diagnosis and frustration.

The latest neurologist - which I saw with my mother last week (Thursday) for the very first time had me step out of the room to "fill out some paperwork" as an excuse to tell me he thought my mother had ALS. I said are you sure - we saw two previous Neurologist that said they couldn't find anything and one subscribed her Keppra and to get some physical therapy. He said he was fairly sure - not only has he diagnosed it before, he has a brother-in-law that has it who he has treated and helped.

He spoke with the previous neurologist and they both agree it is ALS. However, the new doctor doesn't want to break the news to my mother because he doesn't really have a rapport with her. The other neurologist said he would - since he has seen her several times and has a rapport with her. Unfortunately he is over an hour away and I have NO way of getting her there - because her condition has deteriorated so quickly.

That was Friday - now it is Monday and I am in limbo.

I am the only one that knows what is going on - my mother asks me if I have heard back from the doctors and what is the treatment - she thinks she will get better. My sister lives in hope that this (whatever it is) is curable.

My mother is in skilled nursing (transported from the hospital) because she can't move too well (can't talk or walk) - she is losing weight rapidly. We communicate through her ever worsening horrible writing.

I use to be able to face her with a smile on my face, joke and laugh - as I too was living in hope that we would have a diagnosis soon and that this would just be another chapter in our lives. However - as I know now - I can barely look at her without breaking down.

The new doctor said he WOULD if there was no one else, but he is on-call at the hospital all this week.

ALS is horrible - now I am in an awkward position.... :-? :(

What to do?

I haven't even mentioned that her mother (my grandmother) is still alive (99 years old) and since my mother can't visit my grandmother thinks she is dead and I am lying to her, which I am her POA and Health surrogate. My mothers boy-friend is going into open-heart surgery, who had no other family which I am also the POA and health surrogate for.

While I am not a religious man, I sure do feel like Job.
 
He is " fairly sure" and he is not comfortable telling her? On what is the diagnosis based? Who did EMGs on her? Is anyone a neuromuscular specialist? I know it is not what you asked but I would want to be more than fairly sure and I would not take a diagnosis from a general neurologist who is only fairly sure
Is your mom competent mentally? Is she stable psychiatrically? If yes I think she has the right to know where things stand and the doctor needs to step up to the plate.
I am sorry this is a horrible situation for you
 
Agree w/ Nikki -- this is no time for "fairly sure" and she has the right to know as much as you. The timeline you describe sounds much more like a stroke or brain tumor, just to name a couple. Has she been evaluated by the MDA ALS clinic at Sarasota Memorial or is there somewhere closer? Regardless of her ability to transfer without help, there are wheelchair vans to get her somewhere for a definitive answer.

If she is losing weight rapidly, that should be the first priority. If solid food is difficult, they should be providing high-cal, high protein soup/smoothies/puddings and the like. If she needs a feeding tube whatever the cause, that should be discussed. If she loses too much weight, the diagnostic process really won't matter.

I am sorry that you are facing multiple family crises and would suggest that you contact the local senior services agency to see what resources they could offer, as well as the social worker at the hospital where your mom's BF is having the surgery. As for your grandmother, even if your mom can't talk, you could connect the two via video call and they could at least see each other; your mom could use blinking/a word board or whatever she is up to.

Let us know how things go.
 
Please let me clarify...

On Thursday he was "fairly sure" just visiting with my mother and reading all the reports and test results from the two other neurologist. On Friday he had her come in the morning for a nerve test (hooking up electrodes and sending small currents through the muscles of the legs, arms and back) and sent her in for another MRI. After the nerve test on Friday morning he was very sure. He said he would consult with the other neurologist. He called me back on Friday afternoon and the other neurologist concurred with his diagnosis as well. The MRI came back with nothing.

She has had several blood tests, MRIs, EMGS, checking proteins, etc. We have gone through a battery of tests with a rheumatologist and 3 neurologist. The current Dr has suggested also going to SMH (Sarasota Memorial) ALS clinic as well - but at this point he feels it is really about taking the next step and letting her know and the planning phase. I am going to get her SMH - but that seems more about dealing with what we already now know. Should I not say anything and let the SMH group run MORE tests just to confirm what now 3 neurologist have agreed.

They have ruled out strokes and brain tumors as well. They have ruled out GBD, LUPUS, and a host of other items too.

She is in Venice and the wheel chair van will NOT take her to SMH, so I am contracting with another service to get her there right now.


My mother is wanting a quick diagnosis and getting treatment to get better - she still thinks this is some temp disorder and she will be back to dancing soon. She is already distraught about not being able to see her own mother (who is in another nursing home). She is on lithium (because she is also bi-polar) and takes disasipain as needed for anxiety - because she breaks down and hysterically cries to a point of not being able to breath.

I am affraid to tell her about ALS because it could send her right into a depression as well. My sister visited today and couldn't deal - (leaving every few minutes to go into the hall and break down crying) - she hasn't seen mom since christmas and has no idea either. She too thinks mom is going to get better and is MAD that mom is not on any treatments yet.

Mom's boy-friend of over a decade is also on the belief she will be back to dancing and walking, but he is going in for major open heart surgery next week and already doesn't like doctors and is pissed there is no diagnosis and no treatment yet. Thinks all doctors do is play golf and couldn't be bothered - so I am dealing with his volatile temporment as well as dealing with him from a POA / Health Surrogate stand point.

Then there is grandma - witty, sarcastic, and so full of life at 99 (leaving in a nursing home). My mom hasn't visited since Christmas and grandma thinks she is dead - or she would come no matter how sick she was. I tried to explain she has problems walking and talking and the doctors are treating her and when she gets better she will come by. However that was BEFORE the ALS diagnosis.

Mom with ALS - who doesn't know it and thinks she is going to get better.
Boyfriend with open-heart surgery - thinking doctors don't want to bother.
Sister who is hysterical half the time.
Grandma who thinks I am lying about mom not being dead.
3 Neurologist who collectively agree that mom has ALS - but now they are drawing straws on who is going to tell her.

I am a strong guy - emotionally - Navy Vet and seen my ups and down, so I sail pretty even keel. However, I also have a family and a 10 year old son that I am taking care of, plus three businesses that I am managing and also traveling for.

I never thought - in my entire life - I would ever get tired and drained. However - this is a tiring process when you are the only one trying to balance all of this.

I have not reached out to anyone for help or told anyone except my wife, who has been a massive help. I don't like to share my feelings or personal problems with anyone - never much saw the point in it. However, for the first time in my life I feel hopeless and helpless. I have always been the man in the family (for grandma, mom, sister, and neice) - I pay for everything, take care of them, feed them, what ever is needed - because I love them and that's what we do for those we love - no complaints and never surrender. In the past I could solve any problem, fix anything, get it done - so they never have to worry about it.

But now - there is nothing I can do and it seems that the Doctors have left me adrift in a boat by myself. I know some horrible news and I don't know if I should say anything or let the Doctors (after they figure out the who/when/what/where) are going to. I also don't know how Sis, Mom, Grandma, and boyfriend are going to react - they are all in denial of anything serious and emotionally volatile.

I am seriously at my wits end.

If my mom was paralyzed, needed surgery, etc - no problem. We face it, deal with it, do what needs getting done and moved on. My mother has already lived through breast cancer (which she wasn't suppose to make it 6 months - but that was almost 10 years ago). So we have faced it together as a family - but ALS?

I have never felt so mad, frustrated, and hopeless in all my life and I don't have anyone to turn to that can help me FIX IT - because there is nothing TO FIX.
 
Please understand I am not looking for pitty, nor am I complaining.

I am looking for advice and trying to vent my frustration - because for the first time in my life I feel hopeless and helpless to do anything to make things better for the ones I love.

Everyone looks to me for support, help, guidance and I feel that I will let them all down in the end.
 
Thanks for clarifying a bit. Does your mom have a current mental health clinician? If there are worries about her handling it you might consult them but otherwise the tack I would take is something like " mom they are recommending that we go to SMH because right now the doctors think it looks like ALS and we have to be sure. "

If you tell your mom is that also telling her boyfriend? Given he is having major surgery possibly I would hold off until after the surgery. Maybe. Depending on dynamics. For his health.

Believe me I get how you feel. At one point I had three jobs and 2 catastrophically ill parents who lived an hour away from me and my work I thought I would lose my mind. But you will get through it. In general I think the sooner you are honest with everyone the better it will be part of what you are seeing is likely to be the panic of knowing something is terribly wrong and not understanding what is going on.
 
I'm not sure I'm qualified to advise you. You are in a bad spot. But then - none of us here are in a good spot.

You have three options on telling your mom: do it yourself, have one of your Neuros do it, or have the SMH Neuros do it.
On one hand it's unfair to keep this from your mom. On the other hand this isn't something that's painfully time dependent -- people don't say of als "we caught it in time". If your SMH appt is very soon (sorta common) you could wait, but you should consider easing that path by telling her that the other Neuros strongly suspect a neuromuscular disease and are calling in SMH for an expert opinion.

Either way you will need to sync up with her mental health provider. This disease depresses the hell out of the best of us and thoughts of suicide are common. This "normally" passes as acceptance sets in. Normally...

Finally call the ALS association chapter nearest you. They will be invaluable.

CALS feel free to flame me for this, but do it quickly.

Good luck to you.
 
This morning it has been confirmed that it is bulbar ALS - and fairly progressive/aggressive. She is no longer speaking and barely moving at this point. We are arranging a trip for her to see her Dr. for the diagnosis - I am scheduling a special van to take her, as she is now unable to move very well.

It is a burden to know and not tell anyone - I can't imagine how this is going to go down with her, as she has no idea. I am not sure if I will have anyone else, but myself and my mother with the Doctor - as I will not be able to handle it with everyone else. I think, literally, hearing the diagnosis will kill her and at best bring forth a wave of depression (as she is prone to depression and bi-polar).

Thanks for letting me vent and sharing your thoughts - I don't know who else to talk to.
 
I'm sorry that it seems to be official. But she should still hear it. Most BPD can be managed with drug combos. Did I understand that she is on Li w/ prn diazepam but not on something like Seroquel (quetiapine)? That would seem strange to me. I would certainly ask for a re-evaluation of her meds by a psychiatrist as should be done since she has just transferred into a new facility anyway. If her emotional state is already brittle, no, news of a terminal devastating disease won't be a cakewalk, but not knowing (and perhaps suspecting more than you think) is taking its toll as well.

As to whether it's the right place for the duration, questions would include whether they have a Hoyer lift, what their experience w/ quadriplegia/tube feeding/alternative speech needs is, among other things. If she has a pre-existing primary doc in the area, s/he could recommend someone w/ privileges at her SNF. You do not want to rely on the SNF medical director unless you meet her/him and find a paragon of virtue. You also want to start cultivating nurses, clerks and aides, if this is the place. They have a thankless job and if you treat them as you would want to be, you will likely improve your mom's care.

Close medical coordination by someone who gives a d--- seems very important in any case, the more so because of your many commitments. So to me, the priorities would be to establish (1) is this the right place (your local MDA/ALSA chapters can weigh in as well) (2) getting her more stable to deal w/ the rest of her life (3) getting ongoing medical coordination set up, wherever she is (4) looping the rest of the family and the BF/his network into the plan and getting support like an online calendar so she has visitors spread out over the days/weeks and things like that, who can also keep an eye out as to equipment that would help, training that is needed.

I think you said you were Navy, so you know the importance of planning before you move. If you get a basic framework set up (no, it's not fair that you should have to do it but it will pay dividends), I think the action plan will be more bite-sized for everyone. We will support you however we can.
 
Greg Iwould agree that depression and suicidal thoughts are not uncommon when pals first get the diagnosis. Steve was suicidal for a couple of weeks then I figured it out.(I am a slow learner I guess). Medication has helped him tremendously but I am not sure that if he stopped we wouldn't be right back in the same situation. As progression is happening for him, he needs a little more medication to deal.
 
I have rented a medical transport for her to visit with her original neurologist this Friday to give her the diagnosis. She is currently staying in skilled nursing, under medicare (for rehab - as she was admitted after a fall with no diagnosis). I was told by the Dr late yesterday as soon as she has a diagnosis of ALS, she will be given 48 hours to leave the current skilled nursing facility and will no longer be covered. Now I am on the hunt for a long-term stay facility as her house (nor ours) is prepared to receive her. So I am trying to figure out the logistics after the diagnosis. I have called Sarasota ALS clinic and they are calling me back to make an appointment. Nothing prepares the PALS or CALS for this.
 
> I have called Sarasota ALS clinic

don't forget to contact alsa and mda ...
 
I contacted the MDA clinic in Sarasota - the next visit for PALS I could get my mother into is JULY. I am not sure we have that long. Next support group is in MAY. So it was of little help.

I did contact ALSA as well - sent an email, but nothing back yet.

So far these forums (sadly) have been the most helpful and informative. I say sadly because it sure would be nice to have a strong local help, but I can't wait until MAY or JULY for a support group or doctors visit.

I see the neurologist with my mother tomorrow morning at 10:30am - at which time the Doctor will tell her the diagnosis. I have taken the rest of the week off and will spend the weekend with her as well. It will be a lot for her to take in....
 
See if the neurologist can call and possibly get a sooner appointment
 
Please understand I am not looking for pitty, nor am I complaining.

I am looking for advice and trying to vent my frustration - because for the first time in my life I feel hopeless and helpless to do anything to make things better for the ones I love.

Everyone looks to me for support, help, guidance and I feel that I will let them all down in the end.



We all get to vent here, so please don't feel the need to explain. You more than have your hands full, and it might be time to cut yourself some slack.

In our family, my husband is the one who has always taken care of everyone. Aging and dying aunts and uncles with no children--he stepped up. Nieces and nephews off the deep end--he reached out. Parents, well, he's always first in line to care for them. He's rescued our children over and over, and I can't count the friends and acquaintenances he's rushed to help. And now he's the one with ALS. Everytime I turned around, someone else was asking him to be their executor. Even now he can't understand why anyone feels the need to change that....

So, share the wealth. There truely IS a limit to what one person can do, just as there really is a disease that we can't overcome. You are clearly the rock in your family, but maybe it's time to let someone else grow up and share--if even just a little. As far as letting everyone down, well, if they feel let down it will be because they never chose to stand up and carry their share of the burden. Spoken as one who dreads a future where he's no longer taking care of me...

As others have said, your mom needs to know. This disease takes so much away, that often choice is the only dignity we can continue to give our PALS.

I'll be thinking of you and your mom....
 
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