My mom has had MS for over 50 years. For the past 25+ years, she lived with a partner who (as his own health declined) became incapable/unwilling to make sure they BOTH had the care they needed.
Horrible nutrition, spoiled and out of date foods, doctor visits ONLY when something became a crisis (i.e. pressure wound on foot wrapped up in duct tape instead of going to the doctor, etc.). My mom was down to about 80 pounds and spent her whole life sitting in a recliner. They had moved out of state away from family and were very secretive about their situation and health. My mom didn't see an "MS doctor" or neurologist on a regular basis, if ever. They basically would wait until an injury, illness or other situation became critical and then would take her to the hospital.
Her partner and caregiver passed away a couple of months ago, and we brought mom back to the town where we (my brother and I -- I am older by nine years) were born and grew up. We set mom up in independent living, but it quickly became clear that she needed much more care than that, and my brother, niece and I took turns/shifts of staying with her.
Long story very short, the house next door to me went up for foreclosure auction a few weeks ago, and we were able to buy it for very little money. It's a lovely home that I'm very familiar with. We plan to install stair lifts (three), and my brother is going to live there with her. My partner and I will be right next door, and we will all be pitching in to do what needs to be done. She was released from rehab the other day, and my brother is staying with her at her independent living facility until the purchase of the house next door is complete and we can get it cleaned up and get it "MS Friendly". I anticipate that within a month she will be moved into the house.
Part of my mom's ritual with me all the years I was growing up consisted of her extracting a daily promise to her that I would never, EVER put her in a "nursing home". Acquiring the home next door is the only option we have left other than an extended care facility.
Over the past three months, I've been untangling her finances, managing the closing on her out of state home (it had been on the market for 3+ years and FINALLY got an offer soon after she moved to Ohio), trying to get a handle on her (totally unmanaged) health issues, dealing with health emergencies (three hospitalizations in as many months), learning about BCBS/Medicare/Etc, not to mention my mom's venomous outbursts and downright nastiness and her threats to end her life.
Between all of the mom stuff I'm having to take care of, plus my high-stress job (I am the primary breadwinner in my own family), plus the challenges of my COPD, I am falling apart. My job has suffered. My personal relationship (with my partner) has been strained, but thank goodness it is very strong. My physical well-being is being hammered. I've had some disturbing symptoms over the past couple of months, and my doctor has scheduled a carotid doppler and an MRI. Ironically, the MRI is to investigate the possibility of MS.
How do I do what I need to do for my mom, while not allowing my own life to be destroyed? I've worked so hard to build a secure, happy, peaceful life, and I feel like it's being ripped away from me.