you know what bugs me?

KarenNWendyn

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Also since this is a rants section, I’d like to see people be free to rant without others trying to offer fixes in this section. We can offer fixes in other parts of the forum. The purpose here is to hold the space so people who want to rant can do so without fear of being judged.
 

affected

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As a CALS what really bugged me was the evil stepdaughter who no less than THREE times was to come and spend time with her dad, while giving me respite, and FAILED TO TURN UP (yikes sorry that is yelling but hey three times?)
Each time, I would have had a paid carer here, but cancelled them because she was going to be with him. The last time it was his birthday (the last birthday he had of course).
Now it irked me no end, caused me enormous inconvenience and I was already constantly exhausted. But I always wondered how it must have felt for Chris. He always shrugged it off, and would be upset if I had his kids doing anything at all, but it must have been awful for him.

Of course she still came for dinner the night of his birthday, which I had to prepare for everyone, and which he couldn't eat...

Kim that's so awful to have 2 cancel out at once. You have to wonder truly.

Without places like this to vent that out at the time I think I would have gone under.

Sometimes you just gotta get it out.
 

KimT

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I think it's because I'm always putting on a happy face. They don't see me as sick. They seem surprised when I don't go to yoga class or do water aerobics. They still come to me for medical advice for minor sh*&.
 

Kristina1

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ive lost my mojo. i feel such low motivation. i sleep a lot not because im tired, but because i cant think of anything else to do. i know im depressed, and i started an antidepressant but this where i am. i think the realities of my life have finally sunk in. the other day i cried to my mom that im not even physicially capable of killing myself anymore, someone else opens my meds and administers them by tube. if i wanted this to end id need help and thatt could put someone in jail (plus what an awful thing to ask of a loved one). i think the whole rant upset my poor mom. its not that im suicidial right now, but im terrified of losing the control of a future "out" if i eventually cant take it anyymore
 

affected

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Kristina all you say is so valid, it does truly SUCK.

Remember palliative help can be done completely legally though.
 

blitzc

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Kristina, I totally understand as well. I often don't care how I look or dress because it takes so much effort.
Hugs to you-wish they could be in person! 🤗 🤗 🤗 🤗 🤗🤗🤗 (one for each day of the week)
 

KimT

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Kristina,

I'm sorry. It's so unfair and it's so random. I think about all kinds of things. I have a friend who can and will help me, if that is my wish in the future. I made a promise to my brother I'd not let him go into a nursing home if he loses his mind and I have a way to make sure he will go out peacefully......if I'm capable when the time comes.

All that said....you do matter. Never forget that. You brought some pretty amazing kids into this world and a piece of you will live on. Things have a way of working out.
 

lgelb

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I will "rant" about the fears around death that keep it in a cone of silence even in a terminal disease community, that let you, Kristina [we have corresponded since] think for one moment that jail was a possibility for titrating morphine to full comfort near the end of life. And while we are here, that same sense of denial seems to regularly produce atypically slow progressors as the "poster children" of ALS, who perhaps understandably spew happytalk, while care for the progression that most everyone else has, languishes in obscurity.

And now, a bonus rant -- the current season of a network legal series includes an episode full of ALS falsehoods. A married guy is paying $50k a month for care even in early stages? "Sudden onset ALS" is a formal dx? Seizures soon after dx that require lifesaving measures are a symptom? Diagnosed with no "outward" symptoms? Is the reality of ALS just not glitzy enough for primetime? Guess not.
 

KarenNWendyn

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I’m glad I didn’t see it.

The myth of the happy smiling PALS sitting in a wheelchair, doted on by his/ her loving smiling CALS used as publicity photos for ALSA and other publications is just that — a myth. Not that we don’t have periodic moments of happiness and smiling... but it waters down the reality that this is f—king hard.
 

nona

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@Kristina1 , you are so not alone with these feelings. I think I could have written that post, except for the part about telling your mother. My mother could not have handled that conversation and then I would have to provide her with comfort and assurances. That's a separate rant... Sometimes I would rather people not show up than show up with tears and excuses and essential oils.

I don't so much think about actively ending it, because short of driving myself into a swimming pool, I physically couldn't. I thought about that when I was depressed in AZ, but returning to NH saved me. Literally. But every day I want it to be over, and those feelings magnify on days when my computer freezes or I have a wet diaper or I hear about a party I couldn't attend. I know I will feel it more when I need a hoyer. I try to remind myself of the milestones I want to reach: graduation of my nursing student caregivers ( though their leaving gives me great anxiety), my friend's long awaited wedding in July, my 50th birthday.

Anyway, it is enormous comfort to be able to share those thoughts here. I recall Kay's post before she flew free and I'm not afraid to join her.
 

vltsra

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Nona I had to laugh at your essential oils comment...my cousin tried to sell me some of those from her latest multi-level marketing scheme as if they were going to help.

What's currently bugging me is the number of people who have to come over to "evaluate" my PALS to get approval for a power chair. I do not need you to come here and take blood samples and review all of his prescriptions for a power chair. I just need to move forward on this so he can have some independence and freedom. Oh and the guy who called today to set up the next group of people that need to approve the power chair and explained to me that "we just want your husband to get better". Do you understand WHY he needs the power chair? You are from a home health company????
 

ARCG

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The suggestions from well meaning folks can be draining. Last year I got a call from someone in Californis who recommended a ‘wellness’ guru who, according to them, had enabled him to go off his seizure meds by going totally organic, ‘detoxifying’ his home, etc. and this person was willing to consult with us for $150 an hour .... I researched the person, who had no medical or nutrition education, actually was only trained in real estate, go figure. Needless to say, I didn’t follow up. A few couple months later my friend who recommended this ‘expert’ had a seizure because he stopped taking his meds. You can’t make this stuff up.
 
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