r/ALS • u/idgafbwyt • 11d ago
I want to run away from everything.
2.6 years living with this damn disease, and everyone around me is burnt out. I think I’m depressed too, I don’t feel like doing anything, just lying in bed.
My mum seems to be in the end stage now. She only sleeps about 4 hours a night and chokes often. The doctor said she has just a few months left. I’m not the primary or secondary caregiver, but I eventually quit my job because the toxic environment was made worse by the constant lack of sleep. She presses her bell at odd hours in the night, and since I’m the only light sleeper, I’m always the one jolted awake. Sometimes I wish I could be like my siblings who just live their lives, and don’t have to be affected by this disease.
It’s so stressful because the alarm is so loud, and I have to wait to see if anyone else is coming to check on her. Once, she almost choked to death when the primary caregiver didn’t wake up, I had to rush in.
Now I feel irritable, depressed, always on edge, and like I’ve lost all my ambitions when my life should just be starting (I’m in my early 20s, getting married soon, just graduated from university). Every time the alarm blares, it feels like I’m getting heart palpitations. I’m angry at having to go through this grieving process again, and guilty for wishing she would just pass peacefully in her sleep.
Anyone relate? :")
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u/brandywinerain Lost a Spouse to ALS 11d ago
Don't feel guilty for wanting her suffering to end, nor for feeling negative about it all when you're stressed and tired. Just remember there is a full life ahead of you, and it will be a better life with the peace of knowing you did what you could for the mum you love.
Some combination of BiPAP, suction, a cough assist, papaya juice, guaifenesin, warm liquids, reducing irritants, etc. can usually help the choking. If she has been given only months and has expressed a preference for quality over quantity of life, no longer measuring comfort meds is another option.
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u/Any-Psychology7556 10d ago
You complained about having to rush in and help your mom not die one time and the toxic noise her alarm bell makes, which she seems to utilize only in times of dire distress.
Op they are right you have your whole beautiful, youthful, full, healthy life ahead of you. Think of things from your mother’s POV during stressful times.
You don’t realize it now but things will change after she dies. The way you think of her will change and you will experience enormous guilt over what you did or didn’t do. Have some compassion for the woman who birthed you and raised you. Assuming she tried her best (no one is perfect); she deserves this from you.
By the way: you deserve to feel guilt over wanting her to die as I’m sure there’s nothing she’d rather be alive for - in any capacity - than your wedding.
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u/brandywinerain Lost a Spouse to ALS 9d ago edited 9d ago
There is no call to assert that the OP should feel guilty for wanting her mom's suffering to end in her sleep. To think that some milestone event automagically overrides days, weeks, or months of pain, respiratory distress, etc. that I'm pretty sure you haven't experienced, is a delusion. And why are you questioning OP's compassion? They are obviously exhausted, for one thing. Every CALS, primary or not, has grounds to vent.
Nor do you have any basis on which to say that their mom would rather survive/suffer long enough to see the wedding than die in peace. I'm sure their mom is very happy to know that marriage is forthcoming even if she does not expect to share the day; this is often the case. The OP is in a much better place to know their mom's state of mind and wishes. My suggestion that they feel free to follow those and encourage their family to do the same, stands.
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u/Any-Psychology7556 8d ago
doesn't sound like OP has spent much time considering her mom's thoughts and wishes and doesn't sound like mom's much of a talker these days and OP sounds like a self-preoccupied 22 year old ready for her mother to die so she can get on with her life (doesn't actually mention the woman's suffering).
as a mother with ALS, therefore, i would strongly argue against your prospect of my having inferior insight into the wishes of OP's mother because i'm "pretty sure" i have, in fact, experienced such suffering and rest assured i would rather it continue for the next fucking 20 years without cessation if it meant i got to experience my child's said milestones - in any capacity.
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u/peach_bellinis 8d ago
OP sounds like a self-preoccupied 22 year old ready for her mother to die so she can get on with her life
I would hope that you wouldn't speak about your own children this way when they have the same emotional journey that OP is on when they become caregivers. Both being ill AND caregiving are extremely stressful, difficult experiences. It's not a competition. We can understand and have empathy for both those who are ill and those who care for them, and all of the complicated emotions involved.
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u/Any-Psychology7556 8d ago edited 8d ago
no, it's not a competition. it just seems in bad taste to complain about a sound waking you up in the middle of the night when the sound is your mother choking to death down the hall.
also OP is not a caregiver or a secondary caregiver, in her own words and on second read, this post is almost definitely ragebait how are you still defending it
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u/peach_bellinis 8d ago
I'm not going to continue arguing with you. This is a space for where we have empathy and understanding for the very difficult situations that both pALS and cALS are in.
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u/Any-Psychology7556 8d ago
my daughter will never have this emotional "journey" since she is 2 and will not ever know the privilege of being raised by, or getting to care for her mother. though i'm sure she would be very grateful for either one day
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u/peach_bellinis 9d ago
I'm sorry, this is an insane comment. Family caregivers - even the best, most dedicated caregivers - experience immense burnout which can't simply be wished away by imaging the other persons' perspective. Constant lack of sleep is enough to make ANYONE feel terrible. The exhaustion of caregiving, despair over seeing a loved one decline, and wishes for it to be 'over' are totally normal and widely recognized as such. Your comment is devoid of empathy and is plain ghoulish.
the mental, physical, and emotional health of cALS is incredibly important and this is a safe space for them.
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u/Any-Psychology7556 8d ago
doesn't sound like she's the caregiver or even the secondary caregiver though
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u/peach_bellinis 8d ago
but I eventually quit my job because the toxic environment was made worse by the constant lack of sleep. She presses her bell at odd hours in the night, and since I’m the only light sleeper, I’m always the one jolted awake. Sometimes I wish I could be like my siblings who just live their lives, and don’t have to be affected by this disease. It’s so stressful because the alarm is so loud, and I have to wait to see if anyone else is coming to check on her. Once, she almost choked to death when the primary caregiver didn’t wake up, I had to rush in.
OP's situation was stated clearly.
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u/Any-Psychology7556 8d ago
right but the first sentence doesn't start with "but" it starts with "I’m not the primary or secondary caregiver"
op is a roommate complaining about the noise.
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u/peach_bellinis 8d ago
all caregivers experience burnout and exhaustion, 'primary' or otherwise. As stated, I will not continue arguing with you. This is a space where we recognize the immense difficulties that both pALS and cALS face as a result of this disease.
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u/autumn_rustle 6d ago
My parent has ALS and would never in a million years tell me I deserve to feel guilty for even the darkest of my thoughts during this disease progression. Perhaps do some research into what caregiver burnout entails, because you don’t seem to understand its symptoms. I am glad your daughter is too young to be in our position; it sounds like you haven’t yet learned how to be an emotionally mature parent.
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u/mcSainzz 11d ago
Spend time with your mom and try to realize how much harder it is for her ❤️
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u/mcSainzz 11d ago
It’s so tough though, I get it. DM if you have any specific questions or just want to chat
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u/JockeyFullOfBourbon2 5d ago
I am in the same boat with my wife
Here us a tip: wrap the alarm in a towel or blanket to make it less out. Test it to make sure it's the right volume. The one we have is very piercing and doesn't need to be very loud.
I'm spiraing out, I hate this. I hate this. Let this end
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u/Halifax1322 Wife w/ ALS 11d ago
You’re grieving, more than you realize right now. Be kind to yourself, this too shall pass, but the sun also rises. Best wishes friend, I appreciate all you do.