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JamieL

Active member
Joined
Feb 19, 2013
Messages
51
Reason
Loved one DX
Diagnosis
02/2013
Country
US
State
Texas
City
Dallas
I've been hanging back, but reading quite a bit. I feel like I tell y'all my mom isn't
"that bad," and then I go visit them and I find myself consciously forcing myself from visibly showing my reaction... my reaction to how thin she is... how slowly she moves... how slurred her speech is. Then after a bit, she seems "normal" to me again. So I don't know if she's getting worse each time, or if it is the same as it was the time before, but the shock is repeating itself. I think that I have come to terms with reality, and intellectually I think I have, but then I hear the words "terminal" in relation to MY mother, and I start to panic. She left me a voice mail and I have been obsessively freaking out about NOT deleting it in case it is the last one. I want to record her reading to my kids, but not sure how to say "hey Ma, can you read to the girls so I can record it... you know, for after you're dead?" It's just awful.

So I was feeling good about tomorrow. Then last night called to firm up arrival time with my Dad so that I'm home from work to meet them at my house. He has very bad anxiety and I don't think his meds are right. I don't think the Ambien is what he needs since he can GO to sleep but not STAY asleep. From what I can gather, he found some drug distributor company that sells you Rilutek based on a percentage of your income. But he is getting the run around on forms, them saying the doctor faxed but didn't sign a form, etc. So he is all agitated about that. He basically created a 5 minute tirade whereby he somehow managed to work in his hatred of Nancy Peolosi, the drug company, Rilutek in general, any clinic that does drug studies because they are trying to make you think there's a cure when there isn't, how he is not having anything to do with it if it is "from the government" (?) and how he will just leave if they confuse him. Um. Ok. Sooo if confusing him is the litmus test for if we fly out of there in a rage or not, I suppose we shouldn't even go.

I know he is exhausted. He actually IS a very intelligent man. But I don't even know what to do with that. And at this point, I am afraid his attitude is going to be of detriment to my mom. Because if he freaks out and storms out, she'll be hot on his heels. Or at least as "hot on ones heels" as she can be at this point. :( I felt good about my list of questions. I had planned to let everyone else do their talking first, and listen to the doctor. Then ask any of my questions not answered. But now I'm terrified my dad is going to get overwhelmed and thrown off guard at the first little thing. And if he DOESN'T, I'm afraid anything I ask is going to overwhelm or upset him. Can't very well ask him/them to leave the room though! Ugh.

Thanks for letting me vent. Please pray for a smooth visit tomorrow.

Jamie
 
I can relate, my mom had open heart surgery and she had always taken care of my dad. He is a disabled vet from viet nam and is a take charge kind of guy, I had to repeatedly apologize to the hospital staff for his gruff manner. He is used to barking out orders and my mom jumping.

He was lost and couldn't comprehend my mom being unable to do for him and the staff looking at him like he was stupid. Even walking to and from the hospital room to the hotel (which was connected) he would get lost. My son tried to tell him he was going the wrong way and my dad kept going, my son let him go and came to the hosp. room with out my dad and my mom went into a panic. After about 20 minutes my dad showed up and boy the fireworks flew.

I don't know what to tell you. All you can do is what feels right for you. Get the answers you need so you can be there for your mom. If your dad gets upset then he gets up set. Its scary I know but you need to know what to do and how to go about it when the time comes. Most of the staff will understand. Everytime I felt I needed to apologize to the staff they would say it is not the first time and they understood. I am sure it will be that way for you too.
 
Jamie,

Sorry for everything you're facing.

My impression of the clinic we attend is that these exceptional care givers are highly trained and can deal with the myriad of people and emotions and family dynamics which make up ALS. They are quick at assessing reactions and the very first thing I was told is that I'm in charge of my care. After the initial assessment, I decide which member of the team I want to see again. For the most part, I decide how deeply I want to discuss a subject, how far off in the future I want to look... Well you get the drift. If your clinic follows a similar protocol, your Dad will recognize that your Mom is in the driver's seat. It's totally about her.

Your Dad, I sense, really wants to fix the problem and is frustrated at his inability to do so. Hopefully, he will find the appointment (s) a relief and get the respite he needs. Even if momentarily sharing the load. The staff will let him know he's not alone in this and will give him and you also, a ton of information and support. It's really quite remarkable, in my opinion. The first visit is truly draining, so brace yourself. Personally, I was scared silly prior to my first visit. Two forum members assured me it would be OK. They were right!

Remember, we are here for you too. So, if you don't get all the answers you need, maybe we can help fill in the blanks!
 
Thank you both.

I am actually not sure that this will be entirely the same. I said this in an earlier post, but the ALS clinic is actually the first Friday of each month, so not until this Friday. But after getting all of her test results sent in, the doctor (neurologist at the ALS clinic) had his nurse call my dad and say he wanted to schedule what he called a meeting (not like an actual doctor's appointment with an exam I guess) first. Hence our visit today. But it IS at the ALS clinic with that neurologist. The fact that it's a 3pm appointment also tells me it is more of a meeting. What has me thrown, and one of the reasons I inisit on GOING to these things now, is what my dad said the nurse told him. He said "well, the nurse called back after they got all of Barbara's records. She said Dr. Heitzman isn't sure about this so he wants to meet with her first." So I was like, "isn't sure about what?" My dad says "Oh I don't know" <insert 10 minute ramble about totally unrelated stuff>. So then after patiently waiting I said "you said he wants to meet with her first, so like before something else? Do you mean meet with her before he admits her to the clinic for treatment?" He rambled on, never answering that question. It's like he has become totally unable to even glean WHAT is important information he receives and what questions to ask! What I did pick out of the rambling was that the nurse apparently told him that normally if a patient has a defninitive diagnosis of ALS from another neurologist, Dr. Heitzman does a cursory review of the patient's records, and then they schedule them for the next available clinic appointment date. Clearly not what happened here. So. Now for an entire month I have gotten to fret over this. As my friend told me, "it's like you're on the roller coaster ride of terminal illness." And that's what it feels like. But I mean how do you not ASK "why is she not being scheduled for the clinic if she has a diagnosis and what is he 'not sure about' after seeing her test results?" I guess it's neither here nor there. I'll know in a few hours anyway, right?

The real kicker here is my mom seems to be in a much better place to handle her care than he is. But he is very protective of her, which is GREAT, and taking care of her every need. But she has to force him to leave the house every day. He's a gym rat still, even at 74 years old, and she makes him go. I think for his own good, but also because he is driving her a little nuts. ;) But seriously, it has gotten to where he screens phone calls and visitors. He won't even tell her someone called until he hangs up. Or will say "so and so just came by to see you" but he doesn't ASK HER if she wants visitors before he sends the person away. And she WANTS visitors. He acted like it was just too much for a bunch of us to come to visit at once. But she insisted and even invited her sister and her sister's boyfriend over too. It's like she is still trying to live her life and he is trying to keep her in a bubble.

Ok. Enough unloading on you folks for one day. Thanks again.
 
So, Jamie, how did it go? You are probably exhausted but thought I'd ask.
Ambien and similar meds can cause confusion and so can lack of sleep (duh). Not knowing anything re your dad, an antidepressant might be a consideration, or making sure he's getting to vent w/ his friends.
When the clinic nurse follows up w/ you, you might want to ask that someone reinforce to your dad that "living life" is what you do w/ ALS 'cause it's generally what people want. If you haven't yet, you might want to steer him to the MDA, ALSA and other sites (try Googling ALS and Texas w/ him, for example) that illustrate that the best quality of life for terminally ill people (or anyone else) is most often achieved by asking what they want, then doing it, and that, so supported, people w/ ALS accomplish some pretty amazing things.
 
It went very, very well. I really liked this doctor, as did my parents.

I supposed the most important part is the "not sure about this" comment. Ugh. So here's the deal. My mom signed the form to release her records from the diagnosing hospital to the ALS clinic doctor's office. She checked "all records" like she was supposed to. Dr. H had his staff call this hospital to make sure that really was all of it and they said yes. Um. Ok. Except that he got the results of 3 of the 24 blood tests she had done, NOTHING from her EMG or any record that one was done, and neither of her MRIs. Yeah, other than THAT, all of it was there. They did include one page from her chart with the handwritten words "ALS diagnosis 2/18/13." So he could see that she did indeed have that diagnosis, but no backup for it and other office insisting they sent all they had. Nice. He did another comprehensive physical exam, having her push against him, raise her arms, walk on tiptoes, etc. Then asked 17 million and one questions, listen attentively, type frantically. Wash rinse repeat. So he was very thorough. He didn't 100% "commit" to an ALS diagnosis until he officially sees all the results. I stepped out and called their records office. I was not nice. Or quiet. They are sending everything else today. ;) In the meantime, he did admit her to clinic on May 10. He said maybe 1 or 2 times a year he gets a patient where he disagrees with the diagnosis. In her case, he said he's seen nothing that would make him question it, assuming her EMG was read correctly and all those blood tests were really negative. I'm sure both of those things are true and this was an administrative issue and not a medical failure. I had no idea that so many illnesses, including HIV, can mimic ALS!

Lastly, he said he thinks she a candidate for a drug trial they are starting. I'm not sure which one it is? One where you have to have no breathing issues and at least SOME weakness in your arms. She seems to fit the bill. Can I just give another example here? Because THIS is what I'm talking about. The doctor talked to HER, not ABOUT her like she wasn't there. Loved that. And she was hanging on every word. When he mentioned the part about needing to come in weekly for a blood draw for 4-5 weeks, then monthly after that, she didn't flinch. Just nodded and seemed interested. But my dad (sitting next to me) starts that "no, no, no, now we aren't doing that." Like with a child, I tried to lead by example, and I just said "Ma, do YOU want to do it? I'll come get you and take you home every week if you want to. Just say the word. If not, that's fine too." And then he was like "I didn't mean it like that! She just gets so worn down... it's too hard on her..." so in his protectiveness, I think he unintentionally keeps her from something that might be GOOD or helpful. But most importantly, he prevents her from making her own decisions.

Well that's the meat of it. The icing on the cake for me was that he walked out with her, hugged her, and said "we are going to take care of you." Aaaaand I started bawling. ;)
 
moderated. Short answer- went well. Thank you for asking!
 
So glad it went well and that you got a great doctor.
It sounds like he was talking about the ck trial. There is a thread discussing mexilitene and ck in the research news section. I hope it works out for her
Best wishes
Nikki
 
So glad the doc made a grand impression!
 
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