mom came home

[lms9258]

I realize I am doing the same things. I feel like I'm in a very similar situation. pbush is absolutely correct. Easier said than done though. Who will do it all? How does one just STOP caring for their mom, in order to take care of one's self? I have no answers. I know one thing to be true...I did not "create" any part of this life that ALS/Dementia has literally wreaked havoc on...caused pain, sorrow, extreme stress, uncertainty--need I go on? I wish for you (and myself), for mercy. Our mother's also deserve to finally leave this Living Hell! Don't mean to offend anyone. Also don't want my mom to go--but her quality of life is close to zero. You are an AWESOME person Dianna, I'm honored to have gotten to "know' you. Keep doing your best, as will I. This rotten disease is the "one" that causes "the ever next crises to appear", not your adrenaline. Please let me know how that "coasting" goes for you. If it works, I'll give it a try too.

Laura

 

[dian_na]

I need to top posting about my mom. I don't normally post about my own situation, I'm sorry, I will refrain from it.

 

[brooksea]

I didn't take pbush's post to mean stop posting! I think she meant you just can't expect so much of yourself. But, unless you have help available, that's kinda hard.

 

[jmchilindrina]

Dianna,
I know how you feel. I take care of my mom who is also on a ventilator (2years now) and only has movement in her eyes so she communicates via a Dynavox eyegaze system. We have had to do so much online research ourselves as most of the doctors in our area have never delt with ALS. I'm constantly having to train nurses on how to take care of her or print out information for doctors. It's so scary to think that the ones we are supposed to go to for help really don't know very much. Before she got the ventilator there were a couple of months when we were in and out of the hospital and it was always such a horrible experience being in the hospital because they didn't know how to take care of her (we ended taking turns spending the night with her while she was there). She is always so much better off at home than at the hospital. The paramedics didn't even know how to get her to the hospital the one time we he took her when her bipap stopped working so my brothers and I had to get her into her wheelchair and into our van and follow the paramedics to the hospital. I've lost so much faith in people who are in the medical profession and I know that's not a good thing but it's the truth.

 

[jwife]

Diana, I don't really know what to say except you are exhausting yourself. Can you change Doctors? At least maybe you can get one who can speak English. I am so sorry that you are in this place. It is so difficult to care for an ALS patient and then to have to be the initiator of her medical care is just over the top. I can't imagine what you are going through. Fortunately for him, my PALS did not reach this stage. This has to be so hard on you and for your mom as well.
Hugs & prayers are all I know to say. You are a SAINT!
Janis

 

[jwife]

Laura, I just read your post. I am not offended in any way. My PALS died almost 2 weeks ago and I wish that everyone could go before they reach the stage that your moms are in. I agree that it is not a quality life when it becomes this difficult. My husband's breathing muscles just seemed to stop working and he did not linger. It was a shock to our family to lose him so quickly, but we are so thankful that he did not suffer.
My thoughts and prayers are with you and the other caregivers who watch their loved ones struggle.
Janis

 

[dian_na]

My mom chose her vent, she still continues to choose her vent when asked therefore it is my resposibility to respect those wishes and that is exactly what I am and will contiue to do. Quality of life is a mindset. God will take my mom in time. In another forum I spoke of a doctor who pathetically told me I needed counsoling after a lecture about quality of life he says, "take it from a man who has a son with downs syndrome" My answer to him .........
"If you think for one second your life, because it fits into 'your' normal is any more valuable then your son's, I have to wonder who requires the counsoling here."

 

[lms9258]

Guess I've been told...sorry to have offended.

 

[Katie C]

Laura... you certainly didn't offend me. As horrible as ALS is, I think some CALS really don't understand the magnitude of difference caring for someone with the ALS/FTD combo. Dianna's mom is in some way still able to make decisions about her own care. It sounds to me like you are where we were with Glen... trying to care for a person with the same set of physical challenges but who is no longer the person you loved and who loved you. In fact there are times when they actively dislike you and let you know that. The quality of life truly is almost non-existent, and they don't understand why because they don't comprehend their disease. And so yes... when Glen developed pneumonia we did not actively fight the infection. We kept him comfortable, and let him go. Like I said.. there are those who don't/won't understand... and there are those of us who in fact totally do. Hang in there.

 

[dian_na]

I didn't type any of that to offend anyone. But my mom does blink in answers when she is welll rested, not always but never the less still does. I comprehend ALS more then I want to. I know for one she is still aware of everything, and my bet is even when she isn't able to ever again answer somehow, she will be one who knows exactly what is going on. I'm not a selfish person, I will continue as long as mom wishes, God will call her when its time with or without a ventilator. Anyone who can pull a vent on someone looking right at you isn't someone I would want to meet up with.

Anyways as I said earlier I need to stop posting things concerning my mom.

I think the most accurate response is from pbush, he or she is right, but I don't know any other way. And mom knows .....

 

[AKjo]

I'm learning there are NO right answers in ALS. Each and every one of the CALS on this forum has my utmost respect. Everyone has a unique story that dictates a unique response and everyone needs to feel free to share, vent, and seek advice.

I have benefitted from reading all posts on this forum, and thank everyone for their contributions.

 

[Katie C]

Jo, you hit the nail on the head... the one thing everyone should take away from this forum is that no two ALS stories are the same. So what works for your family might not work for mine. What works for my family might not work for the next family. I think because we all have to make decisions that we don't want to make and that are uncomfortable, we sometimes come away sounding critical and judgmental when really we're just confused.

The best thing to do is to read each post, glean what you can from it, and try to remember that each PALS and CALS is striving to learn and do their very best.

 

[LauraW]

I hate the dr's too. My doctor just recently fired me...and my husband. Yes, sent us letters saying he could no longer be our dr because I did not follow his orders. It was about me and I simply disagreed with something he wanted me to do. I know my body and I am allowed to dissagree...right? Aparently NOT. he is Mom's dr also so now I am going to have to find a new dr for her also. Not sure how that's going to go. I have felt from the beginning that I have to diagnose and treat Mom. I am sick of them all.

 

[jwife]

No one is saying that you need to stop posting about your mom. That would be the last thing any of us would want. What is so great about this website is that you can post about your PALS and communicate with others who have similar experiences. Not everyone's story is going to be the same and not everyone is going to have the same feelings, but everyone can relate to the circumstances that we find ourselves in. We can share our stories/feelings and hope that we won't be judged for those emotions. This should be a safe haven for us to be able to vent, rant, rave and celebrate.
I am not judging you or your mom for the decision to use a ventilator. Those are very personal decisions and not the business of anyone else. What I am trying to do is wish you & your mom the peace that is so hard to achieve when this monster of a disease is a part of every minute of your day. Thoughts, prayers and hugs for you both!
Janis