CALS Roll call

[Barbie]

definitely feeling sassy Tillie!

 

[Barbie]

welcome Autotelic. sorry you felt rebuffed--sometimes folks get testy here if they are feeling overwhelmed, but I am sure no insult was meant to you. Please, join in anytime. we can definitely help you and comfort you. if you have a specific question, start a new thread. this is a good thread to just chat and get your feet wet, get comfortable with everyone. if you have a specific question, always best to start a new thread.

how are you? tell us about your situation...we have folks with every back ground here. hugs to you

 

[affected]

Ridiculously warm Alana - I've been out gardening in shorts and T Shirt everyday!

Yay rego done - tick!

Hotel living - who woulda thought it would be ok? You are so great adjusting to it this way and it will be so worth it!

love ya Barbie

 

[avnl]

Autoletic-I too posted on the PALS roll call and seem to lummox each new online skill. I can now post pictures and try to respond to the roll call. I will never get to know people otherwise.

Barbie I liked how you expressed the coming of death's hoof beats. This process is like grieving in little pieces, readjusting, and waiting for the next loss which gets bigger each time! I cannot imagine life without M but I do not desire him to suffer! You are a wonderful CALS!

To those doing construction, it will get done! Have patience and a drink!

Green Queen. I was not a fan of the dentist without MND. Wow!

M is overecoming a cold and is over the hump, thankfully. I am kayaking and trying to stay cool. Photo is my neighbor paddle boarding and I am in the kayak. He took M sailing last week. I love all my neighbors.
Anna

 

[gooseberry]

Thinking of you Barbie....hope you are managing okay.

 

[gooseberry]

Autotelic it happens to all of us. People just have bad days. Please take no offense. Sometimes we all get a little snappy

Tillie when its not raining here it is like a sauna. Not particularly comfortable to be outside and I swear the mosquitoes always snack well when I am outside.

Avnl sam adams and I are fast friends

Janelle I feel the dental pain. Nothing worse than the dentist.

Just extended our hotel stay a week. Then we will be off to a wedding. Depending on the state of affairs, we may be back in a different hotel when we come back. Saw the construction guys using jackhammers on our house yesterday. It was disturbing.

 

[AZmujer]

I am so exhausted and spent and emotionally numb. My husband has been in hospice since late April, takes morphine and Ativan among other drugs. Paralyzed from the neck down but still talks and can eat and swallow. Uses a biPAP but no peg. He dozes a lot during the day and has been battling compression sores. He's been talking to himself a lot. When I ask him what he needs, he says, "I was just narrating something in my head." PALS cries a lot, which messes up his breathing and the biPAP, and he is also snappish and directive to me and the caregivers we're fortunate enough to have. He was only diagnosed a little over a year ago, and this all feels so surreal. It's really hard to know what to want in this situation. I don't feel ready to let him go, but I don't know how I can keep doing this. Do others feel like this? How do you all deal with the guilt and the emotional stew we swim in? How do you know when the end is near? I realize I am rambling but I am posting this any way.

 

[rosec]

AZmujer, I understand your feelings perfectly. My husband uses a trilogy when he sleeps and has a feeding tube. He can barely speak. I just take one day at a time. About an year ago I thought the end may be near. But he is still here. So far he has not had any major infections or anything. Never had to go to the ER or hospital. We have had Hospice care for about 18 months now. This is my 'normal' for the time being.

 

[Atsugi]

AZmujer, you've been through a lot in a short time. Wasn't your PALS walking just a year ago? Such a quick progression.

I can only hope to give a clue on one of your questions. "How do you know when the end is near?" For most of our PALS, it's about breathing. If his chest muscles are mostly paralyzed and he's not on a vent, perhaps his breathing will be more and more shallow. The hospice doctor might order a small dose of morphine to open up and relax the lungs to make breathing easier.

You mentioned guilt. There's no need for that emotion. Forgive yourself unconditionally with total absolution for anything you might feel guilty about. You've courageously fought this when you could have run. You bravely signed on to care for him all the way to the end in your own home when you didn't have to. You're selflessly doing the hardest job on the planet with no benefit to yourself. You're truly a hero now.

 

[avnl]

Thanks Atsugi. That is advice we all need from time to time.
Anna

 

[Barbie]

beautifully said Mike. I love you and your attitude!

AZ--it is so tough and the worse I think is wanting it to all end and know what that really means. to be torn like that is so awful and please believe me when I tell you that every single one of us deals with that daily, so you are not alone.

I am completely over any guilt. can't do it anymore because I know I have done my best even when that was not good enough. It wasn't easy as I was raised a good Catholic girl and filled up with guilt! LOL

One thing that has helped me deal with my demons is positive self talk. I was always the best at looking in the mirror and seeing my flaws, my extra weight, all my imperfections. I would look at my husband and children and see all the things I didn't do right and beat my self up mentally. I decided that had to stop--I had to love me first! so when I start thinking negative thoughts about myself, I mentally stop myself and tell myself that is not true. I look in the mirror and tell myself I look good. I look at my children and I tell my self I done good and they are good adults because of me. I look at my husband and tell myself I am doing a good job and he is getting good care. the more I do it, the easier it gets to believe.

probably TMI, but just wanted to share my strategy for dealing with all this.

it is so horrible and hard for our beloved pals, as well as for ourselves. you can't take it away from them but you can release it from yourself.


Hugs

 

[AZmujer]

Atsugi, Thank You So Much. I think that is exactly what I needed to hear right now.

 

[cheerleader]

How does it happen that the world's smartest people are on this forum? Thanks to you all for sharing your wisdom.
Barbie, think you could write a self help book!

 

[Barbie]

love u donna!

 

[rosec]

These days, almost every night as I start getting him to bed, my hubby will say thank you for everything. Sometimes he will add 'sorry for the ALS burden' Of course he has to spell out each letter and since I know what is coming I will complete the sentence. .....sigh.....