Rant - CALS only please

Status
Not open for further replies.

affected

Guru status reached
Joined
Apr 26, 2013
Messages
16,096
Reason
Lost a loved one
Diagnosis
05/2013
Country
OZ
State
AU
City
lala land
I am so terribly saddened to tears to realise from that incredible PALS thread that there are so many who are in what I find a less than ideal, sometimes less than acceptable situation.

I'm not wanting to talk about specifics of any PALS here, definitely not. I'm talking in a general way only.

What I have noticed in the closed CALS group I am a member of is that over the past year there has been an increasing number of members joining there who purely just vent about how hard it is, how angry they get, how much they fight with their PALS. It dismays me beyond belief as they go on and on about things that are, well, just what you do for someone who has a progressive disease.

How can we help CALS to realise that this is the last journey they have with their PALS and that they need to make the most of every moment?

We know how hard it is to be a CALS, but at the same time, I would do it all again in a heartbeat for my Chris. I always felt that I had met Chris so that he would be looked after well and with love. His first wife had died of cancer (at only 41), and his kids certainly were not even remotely up to the task. As much as it was horrific that I was losing my dreams, losing my man, and having to do all the caring role, what he went through was just shocking. I still some days just stop and shake my head with a tear and think - my god, what he went through! Not, what I went through, but what he went through.

Now he has been gone more than 2 years, and I'm still around, so really my time as a CALS was 'just' one phase of a whole life. It was the final one for him and he deserved, as does every PALS, to have dignity and a high quality of care.

Maybe I'm naive or something, but I'm shocked that anyone can forget or neglect the most basic of care needs for someone they love.

I was not a perfect CALS, but I am proud of the level of care and love I gave to my Chris and I believe that has helped me heal afterwards.
 
It breaks my heart. My PALS has always been a giver and a doer. He deserves the best he can be given which I intend to give him. It is heartbreaking to see what this monster is doing to him. I can't even imagine how hard it is for the PALS. Just heartbreaking!
 
Agreed in spades, Tillie. I had to stop reading that PALS Rant because I was so disturbed by how some people were being treated.

My PALS may be just starting with this, so he does not need extensive care but I have done health care with 100% disabled people. I know it's hard but I read that stuff and think REALLY?! Here's the bottom line, when this is over, the CALS will still be here, alive and with a whole life ahead of them. The PALS is losing that, completely. My PALS talks about being fortunate compared to young PALS, and he is but that does not really diminish that fact that after working his whole life he got a terminal illness 18 months after retirement. This man who was still installing decks and painting his house is even today wearing orthodics, compensating for his left hand and treating his constant cramps. My loses do not compare to his.
 
I totally agree Tillie. I also had to stop reading the thread because it was disturbing. Certainly, as a CALS, I have been frustrated and overwhelmed, but I can't imagine taking that out on my PALS to the extent that has been discussed on both facebook and other sites. Not to say I haven't had normal spousal disagreements with my PALS since his diagnosis, but perhaps the difference is that even when he was well, our disagreements never descended to ugliness.

But I too am glad that I am able to provide this care to my PALS. He was always so giving and loving and thoughtful throughout his life, and continues to be so, that I am glad to be able give back. That's not to say that at 3 am when he awakened me needing to go the bathroom that I cheered and clapped, but neither of us was ugly about it. I might have teased him in the morning about his impeccable timing in the midst of my awesome dream about Matt Damon, but hey, it was Matt Damon after all ........... :p
 
Thanks for this post, Tillie. I agree so much with what you said. My caregiving is very minor at this point, but I know it will increase. I know it will be frustrating and difficult for me, but it is not because of my PALS. He is lovely and sweet, wonderful to be with, patient and kind to me, and understanding. That's why it's so hard on me to see him suffer. This is the worst thing I can imagine, seeing him dealing with this terrible disease and not being able to fix it for him.

I haven't read the PALS rant because it was labeled PALS only please. I'm trying to respect their privacy.

V
 
Frustrated, confused.,hurt, alone probably describes every cals at some point. But it also describes the pals. It bothers me when I read that thread because some seem so overwhelmed and others selfish.

I worked so hard to provide love and support and care for Steve. I had my moments for sure but I didnt have much real help.
 
That thread totally stressed me out. I couldn't imagine reacting that way to my dad's situation. I would do it all over again in a heartbeat.

Our family had a lot of turbulent times because there were three of us trying to care for him and frustration would get the best of us, but we never took it out on him. So sad.
 
Thank you, Tillie, for this thread. I don't know when something as affected me like the PALS Rant thread. Talk about raw truth--it ought to be shared with anyone who knows anyone with ALS. I am so sad, as you say, that so many of our PALS are treated this way. It's so hard to truely imagine life in their shoes, so reading it in their words is an eye opener.

I love my husband with all that I am, and I'm committed to doing everything I can to make his days as comfortable and pleasant as possible. I know that I don't have the distractions of children at home or other people to care for--nor do I have to work, and all of that makes things infinitely easier on me, yet I have been guilty of rolling my eyes a time or two.

Now I feel like dirt. I know that I need to get my act better together, ironically enough take time to care for me, so that I don't do the things we read about with such pain.

I've doubled my Lexapro so that my responses will be more appropriate. Again, I have life so much easier than many CALS. I am horrified, and yet I understand. This must be the most awful thing about this monster. To feel uncared for. To feel a burden. To be helpless without help.

I just don't know how to process this.

Becky
 
I normally give any PALS ONLY threads a lot of privacy, but as a Mod, it was my duty to make sure people were being appropriately civil, so I looked. I was appalled to see some of our wonderful PALS are really being mistreated at home. I won't comment inside the PALS ONLY area, as they deserve their privacy, but I am sincerely stressed. We're reading of vulnerable people being mistreated; abused really. My God, what to do?
 
These responses have warmed my heart again on the one hand, and yet on the other I have this burning feeling of what Mike said - my god, what to do?
 
I dont know if there is a fix. My feeling is most cals involved are out of their league...or feel they are. Unfortunately I think past caregiving experience helps to deal with the beast.
 
I agree Tillie and Mike...I try to stay clear too, but this time I had to at least say sorry...I can't believe some of the things either, blows my mind. There will be a special place for folks like that I think.

tc
 
What to do? OMG, there's a question.

I want to say there needs to be some kind of training for new CALS, and then ongoing training as things progress, but what are the chances of rolling something like that out to where the folks who need it the most would get it--or have the time or energy to take it.

I'd love to see some kind of sensitivity training wrapped up as a challenge. Challenging people to sit perfectly still for 20 minutes, or even allowing themselves to be wrapped up tight so they must ask for everything they need (drink, itch, blow nose, toliet...you get the picture). This could be a dual challenge...the "PALS" and the "CALS" as a team. Which team lasts the longest?

I only know that after reading that thread I took a very different approach with my husband on something tonight. I wanted to treat his big toe with antibiotic cream and he wanted me to lift him out of the bed and onto the chair first. Well, that made it harder for me, but instead of insisting I explained my preference and asked his permission. He hesitated--I think shocked by my approach--and then said move him first. I think he was shocked that I did it without negative comment. I hope I remember the lesson, because the rest of the evening has been very pleasant.

Becky
 
Anyone have ideas on what can be done so the pals arent isolated even more?

Steve accused me of this at one point. We talked it out and he realized I was making his bed, fixing a snack, getting his meds ready, etc. Basically I was taking care of things that needed to be done. He thought I was avoiding him. He told me he would rather I sat with him than make his bed. So I did.

It seems like a big hole in the communication area exists for many current pals and cals. It is so sad for all involved.
 
I find myself mulling this over a lot!
 
Status
Not open for further replies.
Back
Top