Something's gotta give

Oh my I feel for you. ALS is a horrible disease, so that is stressful already, but I have learned being a full time caregiver is a whole other beast. I was in the best shape of my life a year or two ago. Belonged to several gyms, lifted weights, ran, hiked. Enjoyed being healthy and fit after a near lifetime of overweight and tired. It was awesome.

Then a year ago, my mom and her husband had to move in with me because they couldnt live alone anymore. He had all kinds of issues (heart failure, severe diabetes, gangrene etc) in addition to weighing 300 pounds. She was his primary caregiver but she had a lung disease of her own that was progressing to the point she had to quit work and increase oxygen to a point we could barely support outside the hospital. Then she went in for a lung transplant. During the surgery she had multiple strokes. In the 6 months she was in the hospital and rehab, I inherited taking care of her husband full time (in addition to a full time job) as well as being at the hospital for her every day, talking to doctors, rehab etc.

A week before she came home, her husband died. Then she came home. My aunt stayed with us for a few weeks to help but in March she had to leave. That left me alone with a mom who could not take herself to the bathroom, get food, get meds etc. She needed to be in a nursing home, but I was determined not to do it.

Eventually I got some help but during the months from March to June I gained 10 pounds and nearly lost my sanity. I never got more than 2 hours sleep. I was running nonstop all day and night every day. I would try to go to work, have to run home to take her to the bathroom and feed her, run back to work. A few emergency room visits, etc. I ate nonstop - I ate to keep myself awake, I ate for energy, I ate for stress, I ate for nerves. I had something in my mouth at every minute. I could not stay awake more than an hour. I ate up to 6 donuts and 4 snickers in one day once - desperately trying to get a sugar rush. I drank monsters non stop.

Things are better the last month or two, I now have two people who do the nights for me so I get real sleep and dont lose my job We have a neighbor who comes 3 times a day so I can work. Its still stressful, dealing with her meds, insurance, the house, my son, my job, my relationships. My whole life has turned in the past year.

I am grateful I did not start out overweight. I just started back to the gym in the hopes of losing those ten pounds I gained in 3 short months. It is a struggle. I have to make it a priority, which is hard when you have 100 other priorities. Its not like I can just tell mom "Hey - I need a few hours today, try not to pee!" I cant imagine trying to lose weight during that rougher time. Even now, its not anywhere near as easy as it was before all this - I just have no time or energy.

I dont have any real advice for you other than get help. I went door to door in my neighborhood and put a flyer describing what I needed and what I could pay. I put ads on nextdoor.com to find people nearby. I couldnt afford to pay by the hour so I offered things like $40/night but you can sleep most of it. I dont require my helpers to clean or anything since I cant pay much - jsut take care of mom. Still, we are spending over $2k a month on helpers. But I really had no choice if I was to survive without sacrificing my life in whole. If you cant afford it, and have relatives or friends, ask them to commit to a "shift" on a regular basis. I.e. one friend comes every Monday evening. One comes every Sat morning. To give you a break. If you need sleep, find someone who can take the nights for you at least occasionally. Google how other people solve issue.

Good luck. I hope you work things out. This is tough.

You can do this. We can help. yes to honesty... yes to patience... yes to faith.

You are strong and amazing! We'll help remind you sometimes