Mom update

[Erika]

So, as you know, my mom was going to go to Mexico to compare and weight her options on both sides of the border. She is still there, but will return after Christmas for her clinic day Jan 4th. As of right now, she wants to come and go until she is no longer able to, but has decided she wants to stay here once she can't travel. The traffic and lack of ALS knowledge and support there have her feeling stressed. She's afraid she won't get treated fast or adequately should a crisis occur. Were supporting her and have told her we do everything we can to have her visit as often as she wants, but honestly, I think this may be her last time. We think even she know it, just doesn't want to make her return feel so final.

She is now using a wheelchair full time. She is able to stand, but only for transferring and short periods of time. Weakness began on her right leg and arm, and now it is in her trunk area and more recently her left arm and leg. Getting her into a vehicle is becoming increasingly difficult. Eating is a little more difficult, but only because she gets tired, not because she can't swallow. Although, her appetite isn't that great. Which is another thing were dealing with. We can't get her her calorie intake to go up. We've tried smoothies, protein shakes, juices, but she only takes a few sips and just doesn't touch the rest of the bottles left for her. In September, when she left, she would get tired and sweaty after a shower but was still doing it herself. Now my dad helps or my sister because she can no longer use her right arm and her left one is weak. Even with all the help, she is exhausted and needs to rest and laydown afterwards. Which brings me to my next point. She can't get used to that bipap machine. She hasn't used it at night once. She uses it when she feels tired and winded, like after her shower or after having company over. That's a total of about one maybe two hrs a day. I wish she would try it for longer periods of time, but she seems to use it less and less. About 3 weeks ago she told us she doesn't want any feeding or breathing tubes. She was pretty down those days but she said she doesn't want to prolong this illness and that she doesn't want to get to where she'll only be able to stare at her surroundings. She wants to let this illness run it's course. It breaks our hearts to hear her say that, because that shortens her time with us , but we also know it's her decision and only she know really how difficult this is. Already got in touch with a lawyer who will get her decision and wishes on paper so doctors will care for her accordingly.

She has her chair evaluation Jan 6th, but its going to take a few months to be ready and we're going to need it before we thought we would. I hope the ALs loan closet will have one available when she gets here. I think she feels her world closing in on her. She is now using a hospital bed over there and her lazy boy was moved from the living room to her bedroom along with her table to eat and her portable toilet. I want her to have the opportunity to move around on her own again.

I'm sorry making this go for so long. I hate that we are loosing our mom little by little! For a while now I've signed in to read and learn from all of you but couldn't bring myself to write without feeling sick to my stomach. Now I can't seem to stop! Thank you so much for all you share. You're in my thoughts and prayers. I hope you all had a great Thanksgiving!
-Erika
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[Erika]

Her voice is fading too. I've saved old voice messages, afraid I'll forget her voice....ALS sucks! ��

 

[affected]

ALS truly does suck.

I could really feel your love for your mum in your words, and your willingness to just try to meet whatever her needs are.

No matter what we want, they are the ones truly living the hell. I know this sucks completely, but know that you are making a huge difference to her in her darkest time.

 

[soonerwife]

I agree ALS sucks! Your mom is lucky to have you Erika. I wish I had some advice but all I have are hugs! Hang in there.

 

[Erika]

Thank you. I'm so glad I found this forum! I don't post much but the virtual hugs and words of encouragement(event rants!) really do help one feel understood and less lonely in all this.

 

[Narrowminded]

Hugs Erika. Praying for you. This truly does suck.

 

[JennyC]

Erika, I am so sorry, this disease sucks so bad. My mom started having symptoms last November, was diagnosed at the end of April, she was still walking at that point but starting to fall. Now she is completely wheelchair bound. Its so difficult to watch your parent die little by little, its just grief over and over and over, there is no healing until its over. Its such a cruel disease both to the PALS and those around them

 

[Erika]

It really is difficult Jenny. Seeing her scared is what really gets me. Her biggest fear is drowning or dying from some kind of breathing difficulty....and she gets this. Ough! I just pray her passing is a peaceful one after all she's going through. I'm sorry your mom and you are on this journey/nightmare also. I do think of you and everyone here often and keep you all in my prayers.

 

[scaredwifetx]

Erica, Steve's biggest fear is the breathing. I have talked to him a lot about the peaceful passings here. I let him know that we will know when the time is near and that I will make sure he doesn't feel any pain. It has helped to calm him. Big hugs! I know it's rough watching your mother go thru this.

 

[Erika]

Hi Deb,
Yeah we do that too. We talk about the ways meds will keep her comfortable and that we will do everything in our power to do the same. It does give her some comfort, for at least a while. It really is hard to see your love ones so vulnerable and not be able to protect/shield/or make it better. Thank you for the hugs! Sending hugs back and wishing you a great, restful weekend.
-Erika

 

[Atsugi]

Ericka, my wife also chose no tubes, not even a saline drip. She used he mask sometimes but not much. She went very quickly, painlessly, fear-free due to morphine. Very comfortable. Very dignified.

You should probably get hospice involved. We had hospice in our home.

 

[Erika]

After reading through some threads and now that you bring it up, I think I will Mike. Just to make sure, getting them involved doesn't necessarily mean registering, correct? She is still due to get her chair and other equipment and from what I read, she needs to get that first before being placed in hospice.
-Erika