Old 08-04-2015, 12:15 PM #1 (permalink)
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Default Mother-in-law diagnosed

Good day,

My husband and I have just moved to central California to care for his 83-year-old mother. We had been concerned for a while because we noticed she has begun slurring her words in our daily phone calls to the point that we can barely understand her. When we arrived, we found that in addition to progressively deteriorating speech, she also has great difficulty swallowing, especially thin liquids, has excess phlegm that she can't cough up because of a weak cough, excessive drooling, unexplained crying, and probable trachea spasms that make her feel as though she's choking. She's also lost quite a bit of weight, but has a voracious appetite. Her mind is quite clear and witty. According to her nurse practitioner, a recent MRI showed no lesions on her brain. A swallow study showed moderate motility issues. After researching, it seems fairly possible that this is bulbar onset ALS.

She's on Medicare, and so doesn't see a GP but rather a nurse practitioner. She has an appointment today to see a speech therapist, which my husband will take her to. He is going to ask the speech therapist if she can recommend to the NP that Mom see a neurologist.

I am at a loss because I've never had to deal with the medical system before. Can I just ask the nurse practitioner for a neurology referral? Mom is so afraid of being kicked out of her clinic, and so we have to tread lightly. There is a clinic about 45 minutes from us in Fresno that specializes in ALS. Can I ask for a specific referral to that clinic? Any advice on how to proceed?

I thank you all that you are willing to help others who are facing a similar future, either as a PALS or a caregiver.

Jennie
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Old 08-04-2015, 12:43 PM #2 (permalink)
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Default Re: Elder mother - possible ALS - how to proceed?

Sure you can ask for a referral. Around here the NPs can certainly make referrals independently without having to ask anyone. If the NP is providing primary care then they must either have the power or just need a collaborating MD to rubber stamp

It might be worth a call to the clinic you want to go to to see if they see people who have not yet had an EMG or have seen a neurologist. Some clinics review records before accepting a patient I know but I am not sure of their criteria which obviously vary anyway. If you do call it is possible they would offer to make an appointment and actually if she has medicare ( as opposed to a medicare advantage plan) she can go wherever she wants without a referral. A really good thing now would be learning all you possibly can about her insurance. Just original medicare? Is there a supplement? What does she have for medicare part d? Or does she have medicare advantage plan? Or medicaid?

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Old 08-04-2015, 01:40 PM #3 (permalink)
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Default Re: Elder mother - possible ALS - how to proceed?

Thank you so much, Nikki J. I think the most difficult thing at this point is I don't know how to approach this, so your suggestions opened a door, and now I feel like I at least have a starting point. Mom has a supplemental, not Advantage and Medi-Cal, which I believe is California Medicaid. I'll call the ALS clinic this afternoon and ask some questions. I'll also call Medicare. Any advice on what to ask them specifically?

Thanks again,
Jennie
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Old 08-04-2015, 01:52 PM #4 (permalink)
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Default Re: Elder mother - possible ALS - how to proceed?

I suspect any barriers that might or might not exist would come from medi-cal about which I know nothing at all. Medicare itself will let her go anywhere that the doctor accept medicaid. I would start by finding out how the medi- cal works. But you could call the clinic you want ask the questions I mentioned and also mention she is on medicare with medi-cal to supplement if I understood you correctly

Edited to add. Read this if you have not already done so
http://www.cahealthadvocates.org/low...al.html#covers

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Old 08-04-2015, 02:50 PM #5 (permalink)
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Default Re: Elder mother - possible ALS - how to proceed?

Here's my humble opinion, because I don't know your/her situation.

First, Jennie, think about what your mom will need. Long term care, nursing home, or just occasional nurses at home? Be painfully honest and do your best guess on how long will she live. Does the family history show they tend to die at 86 or 96? Is her ALS progressing quickly? Can she walk? Are her hands getting weak?

What are her attitudes? A few people honestly don't want to live anymore after a diagnosis. Does she usually eat and hydrate well enough to stay otherwise healthy? Does she have other medical complications?

What are her wishes for end of life? Will she be living at home or a facility? You may need a hospital bed and power wheel chair and a patient lift to move her to the bathroom.

Once you have a fair view of the future, you can explore options with insurance to see if they'll cover it and what the copays will be.

Again, these are just my thoughts on the matter. I approached my own wife's diagnosis in a very logical, fact-finding way. That doesn't suit everybody.
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Old 08-04-2015, 03:59 PM #6 (permalink)
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Default Re: Elder mother - possible ALS - how to proceed?

Thank you both so much for the time and information. I suspect I will find out some answers today that will be very useful.

Mom is one smart cookie. When we arrived, she immediately gave us a paper that explained her wishes for her remains and an NDR form. She knows that something is terribly wrong and is frustrated that the folks at the clinic are moving so slowly. My first impulse was to call them immediately and ask for a neurology referral, but she is so afraid of being dropped by them. It's a very difficult line between respecting her concerns and wanting to get something done! I expect there will be many opportunities for me to practice restraint.

My husband and I have decided to care for her ourselves. We are in the process of finding a place to rent and will then move her in with us. The progression of her illness has been quite rapid. Within four months she has lost about 85% of her ability to speak and can only eat soft foods/pureed food/no hard bits. I am most concerned right now at her weak cough and her totally backwards sleeping pattern (awake all night, sleeping all day). If this is ALS and continues like this, I doubt she will be here in August next year. As I have read though, ALS is unpredictable. I fear that her age, general health also contribute to the speed of progression.

Before we can discuss anything like feeding tubes and bipaps with her, we need to have a diagnosis, so I am completely focused right now on getting her to a neurologist and learning what insurance will cover. Then at least she will have options. Right now she has none in terms of medically assisted care.

I am practical by nature, so I can speak of all of this logically, but it is like a knife in my gut, and I just want to cuddle her and tell her it will all be okay. Thanks again for the words of wisdom and for your kindness.

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Old 08-04-2015, 04:14 PM #7 (permalink)
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Default Re: Elder mother - possible ALS - how to proceed?

Jennie, you're obviously a treasure, both smart and compassionate. I have no doubt you'll do all the right things to help your mother through this. (Some folks just never get it right.)

Thanks in advance for helping your mother so well. Good luck with the diagnosis. --Mike
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Old 08-04-2015, 05:30 PM #8 (permalink)
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Default Re: Elder mother - possible ALS - how to proceed?

Jennie, you are a treasure! Until you get a diagnosis, please consider adding Thick it (available over the counter) to her liquids. That will help prevent aspiration for those with difficulty swallowing. She may need to eat thickened smoothies or Boost Plus rather than choking on food particles. (Loaded with calories to keep the weight up!)
A side note. My husband's initial symptoms were swallowing, weight loss- and we searched for 2 years for a diagnosis. Finally flew to en ENT specialist at Johns Hopkins Hospital- who realized it was neurological, not a throat problem. Ironically, he said to us, "we can rule out ALS because you are too old for it!" He was 72 at the time! Since, have seen a couple other PALS that are a bit older- but none as old as your mil. Good luck in your quest. We are here for the difficult months that lie ahead. Donna
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Old 08-04-2015, 06:34 PM #9 (permalink)
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Default Re: Elder mother - possible ALS - how to proceed?

Thank you both. I feel more like a kid playing pin the tail on the donkey though.

Cheerleader, I'm so sorry that you didn't have an answer for so long. This is such a tricky thing to diagnose until later stages it seems. I'm sending you a big hug for strength!

Thank you also for the thick it advice. I will try it. I got a good dysphagia cook book, so I have been working to introduce new foods for her. She has IBS, so she is reluctant to try new things. It is going to be a slow process to put weight back on her.

I made an appointment with her NP for tomorrow, so hopefully we'll have a referral in hand by the end of the day. I pray this is the right course and that I'm not putting a needless strain on an already difficult situation.

Nikki J, thanks for the link. That was very helpful. The clinic in Fresno no longer specializes in ALS, and the closest ALS clinic is in LA, which is a three hour drive and not feasible. I will have to find someone locally.

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Old 08-04-2015, 06:58 PM #10 (permalink)
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Default Re: Elder mother - possible ALS - how to proceed?

Hope the appointment goes well.
I expect you are specifically looking for handicapped accessible housing for yourselves. Try not to settle. If you must, as we had to for my parents' really consider exactly how it would work with a wheelchair. We almost picked one place then fortunately measured the interior doorways.

Too bad about the clinic. Is LA really impossible? Bulbar can be tricky to get a diagnosis and general neuros are not always well enough versed in ALS. BTW one of our members is in the LA area and found Cedar-sinai preferable to the other clinic there if you do head for LA.
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Old 08-04-2015, 08:05 PM #11 (permalink)
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Default Re: Elder mother - possible ALS - how to proceed?

Thank you, Nikki J.

My husband and mother just got back from the speech therapist who said that all of her symptoms were due to her advanced age. My husband is happy with that diagnosis, and although I am less than confident in the therapist, I am very happy to be wrong. Diagnosis or no, I will do what I can to make her comfortable.

Thank you very much for your support,
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Old 08-09-2015, 12:00 AM #12 (permalink)
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Default Re: Elder mother - possible ALS - how to proceed?

Jennie,

Not to make anyone less happy, but I don't see any way that a speech therapist can rule out ALS, much less without an EMG. The unexplained crying is a hallmark of MND, as is loss of speech. The only other possibilities that come to mind as fitting both might be a silent stroke, less likely given the progression you describe, and dementia, which you have seemed to rule out. A brain bleed or tumor is another possibility, though the coughing/phlegm fits less well.

All these differentials call for a neuro consult, whether the SLP is right or wrong (you know where my money is), and I'm sure I left some out.

These symptoms are not normal for advanced age. My parents are in their 80s. One is still a full-time professor and the other is an expert witness. I'm sure you know many examples yourself. 83 is not the end of life, unless she wants it to be, and while Mike's points about quality of life becoming paramount at some point are well taken, no one can make that decision without knowing what is really the prognosis.

And even of your MIL doesn't want to go on, with dual eligibility (Medicare + Medi-Cal is what I am presuming?), she would be eligible for more services with a neuro disease and certainly would be able to access services in whatever location you settle her, to at least be more comfortable and able to make informed choices.

I would also be concerned that as her symptoms progress to her limbs, which seems likely, you will be behind the 8-ball in getting her equipment in a timely fashion. In fact, ALS progresses generally faster in older pts and bulbar disease. And even before that, as you point out, she needs a feeding tube, if she wants to continue life (a conversation you three should have once you really have a context) and probably BiPAP even if just for comfort if her breathing/coughing is impaired (and one often follows the other).

There appear to be places in Bakersfield that could diagnose ALS, if that is closer--I'm not clear on her location right now. If your MIL is sharp, she knows this is not the answer. I would ask her for permission to help get her the right answer and access the best care for her future. Then I would also contact the ALSA's and/or MDA's social worker in your service area and ask what resources they recommend. Every Medicaid plan has a way to transfer PCPs, if you don't get action from her clinic. First, you need to have her cards, with the current PCP and the number to call.

You can also flat-out call Medi-Cal and ask for a case manager to expedite, explaining that you are caring for an unstable and undiagnosed frail elderly woman who is likely to crash (acute respiratory failure, coma and stroke are all non-zero probabilities) and cost them a lot of money. I would also call the executive director of the "clinic" where the SLP committed malpractice and say the same thing. The goal is a timely referral to the right, accessible practice with an EMG lab and appropriate expertise. It's up to you, but I'd also file a Board complaint about the SLP. I shudder to think about her advising other pts similarly.

Jennie, I'm sorry to be blunt, and for the burden I am implying you [and your husband, of course] should assume, but there are good ways and bad ways to die, you obviously care about your MIL, and knowing the truth before having to deal with it is something we all deserve, when it can happen.

Best,
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Old 08-10-2015, 11:54 AM #13 (permalink)
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Default Re: Elder mother - possible ALS - how to proceed?

Thank you, Laurie.

I have quietly continued researching, and will pursue Bakersfield as the clinic in Fresno no.longer specializes in ALS. At this point I am watching Mom closely to see if her symptoms progress. I am very grateful for your insight into Medicaid, and will certainly proceed that way if I see a further progression of symptoms. Her NP's office is agreeable to giving us a neurology referral, so I will push for that after things settle down a bit.

Thank you, Laurie.
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Default Elder mother - possible ALS update

Hello All,

We finally got mom in to see a neurologist. It's ALS.

It's a long and wretched story, but we were not able to stay in California. The short version is that my husband and I live off grid in Montana. We own our property, and our income is very small. In fact our income is so small that we didn't qualify for any housing in California. After staying on Mom's couch for a month, we headed back to Montana. Had we stayed any longer she was in danger of losing her housing.

At this point her speech is 85% gone, her swallowing is very poor, and her arms are starting to weaken. What to do first? The neurologist said she needs a feeding tube post haste, so we're looking into that.

Now that we have a diagnosis, we are working to get her into a nursing home. We are also going to call Medicaid and ask for a case worker as lgelb advised on the original thread. I would appreciate any advice and/or prayers.

Thanks for your help,
Jennie

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Old 10-22-2015, 10:37 PM #15 (permalink)
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Default Re: Mother-in-law diagnosed

Jennie,
I've consolidated your posts and moved the thread here, where you will get much helpful advice. I've never been sorrier to be right.

Re looking for a nursing home, am I understanding that you are looking in Cali or MT? Anyway, I posted a couple of links on that topic today.

Before she transfers to any facility, I would focus on the feeding tube and a speech-generating device. While the SGD process is pursued, she could use an iPad or smartphone with an app; every state has a technology assistance program (TAP) that may be able to provide a loaner since it sounds like finances are tight. Often universities have programs as well.

A BiPAP, suction machine and Cough Assist should also be discussed. I would not trust that a facility would have or procure them on day 1, as acquisition can be complex (apart from the suction machine, which it sounds like she needs now, anyway). Be clear in your inquiries that she will have these, as they will limit the consideration set.

Thanks to you and your husband for stepping up for her.
--Laurie
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Mother has been diagnosed with PBP bailey85 People With ALS - "PALS" 6 08-17-2012 10:12 AM
Mother-in-Law just Diagnosed noairfear Current Caregivers (CALS) 3 12-02-2010 08:46 PM
My mother-in-law was just diagnosed with PLS WorriedGirl General Discussion About PLS 3 11-17-2010 01:51 PM
Mother In Law Just Diagnosed JJBroc General Discussion About ALS/MND 6 03-10-2008 06:09 PM
My mother may be diagnosed soon kylisa General Discussion About ALS/MND 4 02-18-2008 09:34 PM
mother in law diagnosed with ALS texgrl General Discussion About ALS/MND 11 10-31-2007 07:04 PM


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