CALS Roll Call Continued

Hi all, like Regina, I'm not sure how this roll call works, but I'm here too. My most dearest beloved sister is in her final days, with cancer. Tomorrow I take my PAL mother to see her. She's not aware of this timeframe...yet...

I know this is devastating me: I've been barely able to stop crying since this morning when her husband called to let me know how far advanced it is: blood clots, multiple tumours...possibility of heart failure or stroke at any moment.

The worst is worrying how it will affect my mother. This sister is the golden girl of the family, so kind, so smart, so funny, so dear. She was/ and still is everything to me. And she's everything to my mother---don't ever let anyone tell you that a mother doesn't have favourites. She is everyone's favourite.

I'm gutted. And I'm worried my mother will really deteroriate on this news. She's 87, bed-bound, legs and trunk gone, starting to slur more and more...sometimes I don't understand what she's saying. I don't know how she'll deal with this. Emotional stress must make things worse for PALs, no?

I'm the main girl for her now. In addition, I'm having to coordinate the move from her current home to an apartment in my building. She moves in in 10 days. Disability contractor (the only one of three that responded to my request for quote) wanted to charge $3800 for an accessible sink, so now that's on our books too now, we'll do it ourselves. I guess we'll get these things done at night.

Hard times. Overwhelmed with anticipatory grief. So sad. Thanks for letting me vent.
 
Checking in. My husband seemed to have plateaued for a while at the end of the summer but now things seem to be speeding up again. His speech is much worse and I m having difficulty understanding him. We have options in place for speech alternatives but he doesn’t like to use them. His core is getting worse too and he looks thinner even though he is taking in plenty of calories.
 
I'm glad to see so many check in, even if it's to talk about how things go downhill.

When I started the roll call thread the idea was this. If you haven't been posting about specific stuff, just do a brief "hands up, I'm here" kind of post.

If you have a particular issue, question or topic to discuss, feel free to start your own thread. It does help to keep things focused and easier to find again later. If things get too specific in here and there are a few different things going on it gets really messy and hard to follow. No big deal though! If you aren't sure, just post away. Life for a CALS is hard enough without being worried if you post right. Our fab mods will pluck a post out of here and turn it magically into a thread of its own if it seems appropriate :)

I know I love to see that you are here and ok or not. There is another one for PALS, and these 2 threads are the only ones that we ask are kept for PALS and CALS alone. Another reason if you have questions or a real topic it's best in another thread so everyone can chime in as we all have at least 2c in our pockets :lol:

@ ReginaS it is indeed the ultimate heart break. My PALS, my husband, was rapid progression and I was truly running to try and keep up with the changes. We all feel the same about the 'how are you doing?' stuff. It's like people are fascinated or something. As hard as the end of life stuff is, I can truly say that this is wisdom. If you can both be really clear what his wishes are, and the health team, you will feel so much more confident if an emergency situation happens. Don't put it off, encourage him to say what he wants.

@ NinjaLady one does wonder how long this can go on, I'm so sorry. If he stops fluids the end will be hastened quickly however. We can manage without food for a surprising amount of time, but not without fluids. If you push him to just take a little here and there through the day, you are actually prolonging things. If he wishes to stop fluids, it is a kindness. Hugs to you as you take him through this final time of showing your love for him xxx

@ Katalin I'm so sorry, that is just too much all at once. For some reason it happens to many of us that suddenly we have a PALS and then others close to us are in crisis and we are stretched too thin. I hope you can help your mum through this, but also be allowed to grieve yourself.

@ ARCG I guess being thankful for any plateau is good, but it must seem over way to suddenly as you watch more losses. So glad you have checked in.

You are all amazing, this is the hardest thing you will ever do. I still don't know how I did it, I was in a total blurred haze I'm quite certain.
 
Kathy, I'm very sorry about your sister. But I know you know your mom deserves to know about her daughter even if the anticipatory grief, just as it is for you, seems cruel for a PALS. If it hastens her own decline, ultimately the mind rules a lot of this, and that will be her choice.

Ninja, what I just said about the mind goes the same way for your PALS. Anything he might be looking to communicate/do/have done, anyone/anything he might be looking to see/hear, this is the time you can help him ease his mind and let go, even if it's just holding his hand and telling him you love him and are at peace, as you told us.

Annie, people here have used a lot of high and low-tech speech alternatives; let us know if you need ideas to try.

Best,
Laurie
 
Thanks, Laurie and Tillie for kind and wise words. It is a lot to deal with. Sad times. Taking Mum to see Nancy today, and we'll be letting her know the full picture when we're all together. My other sister, and the two brothers in law agreed last night it would be cruel to tell her at night...this morning is it. And I guess we'll be dealing with the decline-aftermath of that, physically, for my Mum. Thanks for support.

Kathy
 
Thanks Tillie and Laurie. Not sure I can get through this part...as you both know how painful it is. My PALS will have his wings soon I'm sure of it and I feel like I've been ready for a long time, but now I feel emotionally unprepared. :(
 
Big hug, NinjaLady. I'm so sorry you're going through this.
 
Hi all; just checking in - one of those "hands up" kinda things, like Tillie says. Although I am no longer a current CALS, I feel for you all, and I am wishing you all strength as you battle this beast called ALS.

Katalin - I am so sorry about your sister. You have so much more on your plate than is fair ....... hell, none of this is fair.

ARCG - I am also sorry to hear about your husband's progression. ALS is truly a monster, and sometimes the stress of the "unknown" and what's next is the worst of it.

NinjaLady - wishing you strength and sending you a big hug. No matter how long you have felt ready for your loved one's release, it will still be a shock when it happens. I'm sure you want so much for his suffering to end ....... but perhaps a tiny bit of you wants to hold onto your PALS for a bit longer.

I have not been checking in much lately. I guess I should post more in the past caregivers section. I have been keeping busy and trying to not think too much about ALS. I haven't posted much here on the forum lately. So much sad news (as always) and I guess I need a break from it all, especially with this being the "Holiday Season" and my first Thanksgiving, birthday & Christmas without my husband/PALS Dave. I am keeping super busy and trying not to think too much about ALS, yet I feel a kinship to you all and I often think of the struggles you are all going thru right now.

Love and hugs to you all!
 
Two weeks into hospice and things are going okay. Some confusion about equipment, especially the Trilogy, but overall we are happy with the service.

Sibyl is struggling with her right arm and hand and she is using her left hand to write on her white board.

We have given up on the Tobii. Although I have experience with PCs I have been unable to effectively calibrate the Tobii. Help from local ALS orgs and telephone support have been spotty. Could be that Sibyl’s glasses plus many other issues are causing problems.

Daughters purchased, installed and decorated a Christmas tree in direct line of site for Sibyl. Smaller than previous years but very nice.

Christmas for the family will be celebrated at my daughter’s house and a follow on celebration here at our house. Dinner will be catered.

Our journey with this monster thus far is mild compared to many on this forum. We hope this continues.

Ernie
 
NinjaLady - huge hugs to you. I know your exact feeling having just gone through it. I will tell you, you will make it. Your love and strength you’ve given to your husband will pull you through.

Buckhorn - so glad you see you girl. Yes, this Christmas is going to be very different for many of us here. Sending hugs as you navigate you way.

Thinking of all of you and your current struggles. My prayers are with you. And each and everyone of you is going an awesome job!

Hugs
 
Bonnie, thanks for kind words. And I can totally understand why you'd want to have a break from here...having gone through cancer myself, I know I got a lot of support from the boards then, but then a time comes you need to move along. It can be a little triggering. It seems to me like a river we're travelling along, and there are islands in this river, and sometimes we float away from these islands, and on to other things. I will never forget the kindness and help I got on those boards, and I've gone back to reply to my old threads when someone wanted help, but I also know I couldn't actively stay there any longer, it was too hard. We do what we can.

As for the kind mods and other folks like you who are so often there to reply with support and information, I say thank-you so much.

Kathy
 
@Bonnie, lovely to see you! But don't ever feel guilty about not being here - this is the time now when you need to do what YOU need. There are no right or wrongs in whatever that is xx

@Chincoteaguer we used really low tech because with FTD my Chris couldn't cope well with many things. It is horrible losing the ability to communicate beyond basic needs.
The neuroswitch is becoming more common in Australia (it was invented here) and I don't know about availability over there. This article is a few years old, but they are friends of mine and still using it.

https://www.youtube.com/watch?v=ctk1jOAvTKM&app=desktop
 
We are five weeks into hospice here. For the most part I am happy with the help/guidance. It is an adjustment mentally on what we are doing now. The nurses have been very helpful and kind. I asked about respiratory therapist checking my PALS Bipap and possibly adjusting it. They were reticent to send anyone because his O2 was fine while on the BiPAP. He was very restless at night, calling out repeatedly for me. I thought it may be the BiPAP settings, but with the FTD it is impossible to tell what he is feeling. On advice of hospice started giving Dave 1 mg of ativan before bed and more in middle of night if he wakes up restless. That really seems to be helping. He is not restless during the day for the most part. He sleeps about 15 hours a day.

We had been disconnecting Dave from the BiPAP to go to the bathroom and shower (he still walks) but on Tuesday his O2 dropped to 55 while doing this. So, no more time off BiPAP at all. So now he uses a bedside commode. That did blast hospice loose on the RT, but found out they wouldn't touch our BiPAP. It belongs to us courtesy of the VA. So I told hospice to get us another BiPAP that the RT could work with. So we now have two, which is handy as we can keep one in the bathroom. The RT set up the BiPAP last night. Settings stayed the same as his neurologist and ALS Clinic RT think the issues need to be addressed with medication. Even though she really didn't need to do much, I was very unimpressed with the RT hospice sent. She didn't know what ALS is!! So if we need RT in the future I'm going to insist on someone familiar with ALS.

He hasn't had morphine yet, although we have it. That is now a topic of discussion with hospice.

My gut tells me this journey is winding down. But maybe that is just because I can't stand the thought of this going on interminably. The dementia is SEVERE. He calls my name and then can't tell me what he needs/wants. It breaks my heart. And I am so tired and feel so old :(

Any insight from those CALS who have gone before would be appreciated.

Mary
 
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Remember I am a past CALS too so I get to post here. Ernie, ask about eye control. I just had a talk with and mini demo from their rep. It doesn’t need calibration You don’t have to see a screen but you do have to move your eyes initially and then you blink. There is a way to wear glasses though you might need different frames

It is supposedly billable under medicare though if they already paid for a system that might be an issue. They only have male and female voices not different accents and you can’t transfer model talker. They are working on that. Everyone is telling them it needs to be an option.
 
O2 level on BiPAP most often has no relationship to how "fine" the settings are, Mary, since the major issue with ALS is CO2 retention, not oxygen saturation. I'm still happy to try to help you tweak them even though he can't articulate what's wrong.

Best,
Laurie
 
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