A question about my mom

[melalthia]

Hello everyone

I posted this in the "Is this ALS?" forum.. and this morning when i woke I realized that was not the best place for it.

First of all, hello! My name is mel and I just took my mom for her EMG test on wednesday.
Though the blood work and MRI came back ok.. and the EMG said her neurons are all acting under normal parameters.. the specialist still thinks its MND. More specifically she thinks either:

-ALS
-PBP
-Corticobasal ganglionic degeneration
-Progressive supranuclear degeneration

They want my mom to come back for more testing as they can't give a concrete diagnosis and are willing to put her up in a hotel for a week if she contributes to their research which would also include genetic testing, etc. My mom is in shock and understandably hostile. She doesn't want to do the week and when the doctor gently suggested a feeding tube my mom really lost it. A week has gone by and she doesn't really want to do it. She would rather just get "pneumonia and die quickly".

So my question to those of you who are in the know... what's a daughter to do? My inclination is to somehow strong arm her into everything because the sooner she has a real diagnosis the sooner she make plans. But is that just selfish on my part? I want her to go to Europe.. i want her to come live with me... i'm wracking my brain to figure out what i need to know to be a caretaker.. i want to be there for her. I figure her getting a true diagnosis is the only way to be sure about all this. But I am also aware that it's HER LIFE. Not mine. She is not me. If it were me, i'd fight tooth and nail to live every last moment I could before my body gave out. But she is choosing a different way.. and i'm struggling to accept it because i love her so much. She lives alone, and has no friends. She has me, my sister and her brother.. and we all live over 2 hours away. How can we just accept her wishes and just "leave it alone?" She's all alone.

So i guess my real question is.. how can i be there for her and be strong enough to accept what ever decisions she makes in how to deal with this?

sorry that was so long winded..
-m

 

[mare]

Hi-
I responded to your questions before this was transfered to this forum.
Hopefully the moderators will be able to retrieve it and post it here.

 

[joelc]

I just looked and there was no post from you on the other thread.

 

[melalthia]

Hi Joelc and mare

yeah.. i think the moderators deleted my mail on the other forum. I can't say i blame them as i really didn't have a question about whether or not my mom HAS an MND.. but it would have been nice if you hadn't lost your response. I'm sorry about that...

-m

 

[Al]

A deletion was made because of duplicate posts. I looked at the other post and there are 2 messages from melalthia but nothing from mare. I have no idea where it went. Sorry.

AL.

 

[melalthia]

Hi Al
Thanks for letting me know. I never saw Mare's response on the other forum so i feel really bad it disappeared. For her (for taking the time to write it) and for me. (for obvious reasons.)

I've been busy busy reading posts and trying to get up to speed on things. There's a LOT to learn and consider for the future. In the near future, my mom's neurologist is trying to convince my mom to get a swallow test. My husband and i are packing the kids in the car and going to pay her a visit to see how she's doing on Sunday. I guess i'll find out what she's going to do.

The good news is my uncle and I have managed to pool our resources and collect some money for her to take a trip! I'm really excited about it. My mom has been desperately wanting to travel for years, but she never had the finances to do it. It sucks that it has to be under these kinds of circumstances but better late than never. Its another thing I'm going to bring up when i see her. I hope it gives her some hope that life is not over yet.

Wish me luck!
-m

 

[Blubear]

Hi melalthia, Welcome to our forum! You mom is lucky to have you, you sound like a really good and concerned daughter. It is really really hard when your parent wont do what you would do for yourself, and you are right to respect their wishes. If this is ALS then she will eventually need help. There is no getting around that I am afraid. Right now in the diagnosis stage, everyone is in shock, scared and busy trying to get a handle on it, just as you are doing. You will need to just take things one thing at a time. There is a thread from Joelc on how to prepare that is really good, and I would take a look at that one when you get a chance. Please keep us posted on what happens this weekend and how your mom is doing and what her thoughts are. We are here for you hun!
Hugs, Blubear

 

[melalthia]

Thanks Blubear
It was tough meeting but some good came out of it. My mom is in a lot of denial and is understandably angry. She doesn't believe she has an MND and is rejecting the idea of going for the extra week of testing that UCSF has offered her. (Doesn't want to be a lab rat.) She IS going to talk to her local Neurologist again and get his opinion on everything the doctors at UCSF said, which is good in my opinion. Even though the EMG's came back negative... she's displaying a lot of the bulbar symptoms including choking, excess mucus production, excessive yawning and problems breathing after she goes thru a bout. The speech is hard to follow too and i've been trying to encourage her to save her voice while i research good speaking devices. (I'm encouraged that they make AAC for ipod touches and iphones as my husband and i are apple geeks!)

The good news is she's agreed to move in with us. Not quite as soon as I like but I'll take what i can get.

But it was hard. She is resentful that we are forcing her to find out what this is. She really would prefer not to know! The doctor prescribed her Elavil (antidepressent) to help her with sleeping as she's been depressed and suffering from the intermittent emotional displays... and she refuses to take it. She's fighting us on everything and i just keep trying to remember how scary and overwhelming this is for her. Having perspective and learning abut these diseases is everything right now.

-mel

 

[Blubear]

Hi Mel, That is great news that she agreed to move in with you! She is going to need the help and it will make life much more easy for you and your family. Its a bit strange that the emg's are coming back negative. Thats one of the major tests for ALS. (out of all of them, I hope that is NOT the one she has.) The emotional displays are to be expected right now. You have a great understanding and patience for what she is going through. The sooner you get a firm diagnosed the better prepared you will be. I know that being tested for a week will be very trying, but just explain, its just 1 week out of her life and just try and get through it. In the end there will be things they can do to help her along, especially if it is not ALS. She will have a better quality of life for the time being and that is so very important right now. I recommend her to get to a speech therapist and do "voice banking" as much as she can before she is to hard to understand. Is she having trouble sleeping due to the breathing problems? If so, a bi-pap machine will do wonders for her. She is in the denial stage, which is normal. She will come around, but the sooner the better. Hang in there hun, and please keep us posted on what is going on with her okay!
Hugs, Kari