u/idgafbwyt

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? :")

Is it just me or are they everywhere? Plastered on Luckin cups, cable cars, Miniso etc the budget is insane 😭😭😭

Hi everyone, seeking advice on the best approach for this situation. We currently have a helper, but she seems unable to cope with the caregiving demands over the past few months. My parent with ALS has progressed to choking episodes at night, which sometimes require someone to wake up at 3 AM. In addition, medication schedules must be followed strictly, as any delay can cause her heart rate to spike.

Our current helper becomes irritable when she doesn’t get seven hours of sleep and has expressed frustration about caregiving responsibilities (understandable, as she was originally hired to focus on household chores, but her scope of work has shifted significantly since my parent’s condition worsened).

Would appreciate any recommendations on reasonably priced live-in nurses. Alternatively, would it be better to hire a helper with nursing experience, or consider sending her to a caregiver day centre while the family is at work? Thank you!