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peacecomesfromwithin

Active member
Joined
Jan 31, 2016
Messages
35
Reason
Lost a loved one
Diagnosis
01/2016
Country
US
State
DC
City
Washington
Hi everyone. I hope you are all doing well and are in good spirits.

So, we did it. Miraculously, my mom and I organized ourselves and got a condo in DC and I moved her in on Sunday. I drove her from Santa Fe most of last week (we've gotten to a point where she probably shouldn't be driving) and spent all of Sunday unpacking and deciding what should go into storage. On the drive there I started to understand what it means to be a caretaker. I make three trips to and from the car to unload her stuff and my stuff and the animals. I find us appropriate food. I talk to the front desk and get her anything she needs. I try and hoist her up the one stair into a restaurant with her walker, but it doesn't work and the owner finally materializes with a ramp. We both kind of hate all of it.

In terms of moving, not only is it very hard to fit a lifetime's worth of stuff in a two bedroom condo with zero storage, she has reached this point where she doesn't want to throw anything away. Interestingly, before my grandma died she was the queen of purging things.

So, we are currently surrounded by boxes. Thank god I had friends come over to help unpack on Sunday! Thank god the comcast guy could come and install internet and TV to keep her entertained while I'm at work. Thank god InstaCart can do the grocery shopping for us!

But, the biggest news that I have to share is that I called the Neurology Department at GW University, which is the only ALS Association Certified Center of Excellence in DC and explained her situation to them. She is still 100% in denial and thinks she has copper poisoning and thyroid nodules and arthritis and and and... She refuses to request her records from the neurologist who diagnosed her. She is getting worse. I can hardly understand her when she talks and she has to take a breath for every word and the walking with the walker and the foot braces is even more slow and belabored.... and they got her an appointment next week! They were so nice!! It was the most amazing experience. I cried with relief. Now, to convince her to go and to try and remain patient and kind. Those last two, I wish I had more of.
 
Peace you are truly a brave soul to drive clear across country with your mom. You will find lots of help and support here. I'm sorry you have to be here, but this place is definitely a blessing. Everyone here understands you, you can rant, rejoice, cry, celebrate whatever here.

I think you will be fine. There is nothing you can do to make your mom accept her DX. She may never accept it, only time will tell.

I will be praying for you,

Sue
 
peace I remember your posts wondering what decisions were best.

What you are doing is what life is about, this is the important stuff. You have a lot ahead of you, and lots of learning. Most of us here had no idea what being a CALS was all about until we found ourselves hurtling through the situation.

So many things falling into place on arrival is a real blessing, and I hope the ALS can help.

I truly suggest you see a counsellor, it really helped me to have that someone I could dissemble with. Don't underestimate your needs in what you are taking on.

Maybe patience and kindness is what you are meant to learn now, so keep focused on that. These are two of the most amazing virtues we can aspire to :)
 
Thanks, Tillie. I am seeing a therapist and he is amazing! I am so happy to have found him. It also really helps that he works at NIH and so knows the system and has good contacts. At the end of the sessions, he gives me tasks to follow up on, and then he also gives himself tasks to help me. It is truly amazing. Right now I feel so lucky that things are falling into place.

I just wish my mom believed in therapy. I think it could really help her too.

The highest of highs, the lowest of lows. What a roller coaster!
 
Great that you have a therapist that you can talk with and that can help you.

I remember my counsellor saying to me at the end of the first session - well I can't fix any of this, but I do know how to walk along beside someone. That was exactly what I needed!

Keep talking here, it's just as important a form of therapy!
 
Wow, you have made progress!! I'm so glad that you are getting settled and that you have an appointment at the clinic so soon! Let's hope you can get your mom there. If she wants to call her condition something else, well, it still needs care and those folks can provide it.

Keep us posted!

Becky
 
Kudos, Peace. It's not easy to do what you have done. And, of course, it's true that whatever your mom thinks she has, she needs help with it. It sounds like through your therapy there will be opportunities to help her, indirectly, as well as yourself.

Best,
Laurie
 
Peace, glad to hear from you again, and that it went well. Your mom is so lucky to have you. Remember to take care of yourself as well as I'm sure your therapist will tell you. Peace be with you...

V
 
Thank you all for the words of encouragement! She has agreed to go to the appointment... SO hoping that it goes well.
 
It's wonderful that your mom has agreed to go to the appointment! You are a wonderful daughter!
 
Today, the diagnosis was confirmed. My mom says she still doesn't believe it, but she'll accept the diagnosis to get the benefits from medicare for the PWC and the BiPAP, which she didn't even know she needed until today.

Separately, the doctor pulled me aside and said that it appears to be very advanced and that she doesn't know how much time she has.

I feel like I'm in a bad movie. How does one pretend to be a normal functioning human after this, get work done, take care of the PALS, not fall apart entirely?

Today sucks.
 
Sorry it is tough to get the confirmation. I was my mom's caregiver too. There will be moments when you feel like falling apart and then you realize the fact that this is "temporary" and you want to do the best for your PALS so you get relief where you can- like from this forum and fantastic that you have a great therapist on board- and you keep going.

You will not regret the responsibility you are taking on and you will treasure the time that you spent together.
 
I'm sorry it was confirmed as this monster.

However it may help your mum to move from denial - don't expect her to make that shift today necessarily, but let her move into acceptance herself. I have no idea how I would take it in.

As for how you will manage. <sigh> I felt like I was just bumbling along, I took antidepressants, I saw a counsellor, and I leaned heavily on peer support here and in a closed CALS group. We will support you, and you will find your own way to help your mum.

You are not a normal functioning human being now, even though you are each of those concepts separately - life will never be the same. Just one day at a time now, if it's too much, just an hour at a time xx
 
Today we went to the ALS clinic for the first time. It was an overwhelming yet incredibly helpful experience. One nurse chided me for saying "oh my god" under my breath when my mom got on the scale and weighed only 90 pounds. She had told me she weighed 100, because she knew it would freak me out. It did. All of the doctors and therapists were such warm, positive people. I feel so blessed to have them.

Before the clinic visit, we had an appointment for a PWC fitting and test drive around the neighborhood. We even took the dog. My mom hasn't really been outside since we moved since we moved in a month ago. It was amazing, although I think she's intimidated by the chair.

At the clinic, we also had her trilogy delivered and got trained up on it. Also intimidating.

So many changes just in one day.

The neurologist also brought up putting in a feeding tube now. My mom has always been against this, and says that she would only get it if I wanted her to, because I am too young to lose my mother. I AM TOO YOUNG. But I will be regardless. What I want is good quality of life for her. And for me too. But obviously none of it is that simple. I don't want to decide. I want her to decide what she wants!

I have these moments where I feel just so overwhelmed by it all - by the level of responsibility I have with her AND at work, that I don't even know how to take it. The future terrifies me.

I'm going to my first caregivers support group tomorrow. I feel like I'm doing most of the things I'm "supposed" to be doing, but none of it really helps me feel better.

What do you all do to make yourselves feel better? I'm sure you've discussed this many a time, but it would be nice to hear a few tips for keeping your spirits up or coming back down from crisis mode.
 
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