CALS Roll Call Continued

[Marnes77]

Hi all.

Mana, thanks for checking in.

A bit of temporary relief from stressors thankfully, but not from the sadness and horror. There is no way around that, as you all know.

PALs and I taking a time out for a couple of nights as things got very intense and we both needed respite. He is with family and I am home alone. DD with friends as I am not the best at parenting right now. Or caring. Or anything. The silence is deafening. And a foreshadowing of endless griefy and lonely weekends to come. Used to love Fridays. Dread the future ones with every fibre of my being.

I can't get into details of the latest s***show within a s***show, but suffice to say the universe just keeps on kickin'. I am beside myself without him beside me. Even though I know we both needed the break. All the terrible feelings with no joy or relief in sight.

Sense of humour gone too. For now.

Love and strength to all.

X

 

[Mary2]

I have a sign I purchased years ago...Always Kiss Your Cowboy Goodnight. I have this in my bedroom. I admit there were evenings I was so exhausted from the day and evening routine that I didn't do this. But the more evenings you kiss good night, and days that you say you love each other and time you spend holding hands the better. Caregiver burnout and exhaustion is a real thing, but on the other side there is regret. The less regret the better. A goal to aim for is pride. Pride in the physical care you give and in the emotional care. I am convinced this pride like your love for each other can last a lifetime.

 

[Doing My Best]

Wise words, Mary. I have to confess the burnout is getting me down lately. Diagnosis was in Feb. 2020 and although I'm grateful for relatively slow progression, I am very, very tired and, I admit, I feel like my life has been hijacked and there are times when I resent it. My PALS has been quite disabled from the very beginning because the first thing he lost was use of his hands and arms. It was an eye-opener to me to realize how much more disabling that is than losing use of your legs. If you are in a wheelchair but fully able with your hands and arms you can be quite independent. But he has needed a great deal of assistance for 3 ½ years now, and of course with progression to all the other needs us CALS know and love, it has been much more than a full time job the last couple of years. I do take pride in doing everything I can for him, and I feel guilty for the moments when he calls me and I think "NOW what?" (not that I would ever in a million years say that aloud). And I do have paid help part time, without which I don't think I could have managed, so I'm grateful for that.

I guess I'm just venting. But thank you for the reminder that regret is something I don't want to have, and so far I can honestly say that I won't; I know I've been a very good and loving caregiver. I just get anxious sometimes about how much longer I can maintain and it's impossible to say how long I'll need to. And at the same time I dread the loss and the "afterwards." I appreciate this forum and I think you'll understand, although I even feel ashamed writing this. Guess it's just one of those days. A good night's sleep would help and I have a caregiver staying overnight tonight, so I am optimistic I'll wake up in better spirits tomorrow. Thanks for being a place I can dump all this....

 

[RinT]

Hi all, crazy week. Just had our ALS clinic nurse suggest on the phone that we look into hospice. I was shocked as my mom is still functioning pretty well but then thinking about where she is vs even 2 months ago.. it is hard to think about. We are just past the one year anniversary of my dad passing to Alzheimers and Parkinsons as well.

Yesterday had a home caregiver cancel their overnight shift same day because "it's a 45 minute drive, and it gets dark early now" (surprise, it's fall! Where do they find these people??)

But, I know I have much to be thankful for. She can afford home caregivers for much of the week and I can work remotely from her house. There was a bad month where I was working FT and also trying to care for her 24/7, getting up every 2 hours at night, and am glad we survived that. My health is good and our finances, while not good enough to be able to move any closer, are stable. And she has lots of friends who call and visit. I wish I had more friends who I could talk to about things like this but it's a lot. Browsing these forums has been a help. Hope everyone has good holidays