Enough rambling through background and onto how. Almost two years ago we moved into a custom built home to accommodate current level of disability and tried to anticipate progression. In addition to physical structure we hoped we would be able to get some extra help with home care moving closer to Patti's original home turf, family and friends.
Gamble for help never materialized and in new environment old standbys had been left behind. Classic case of the grass is always greener and when you are desperate, boy is it always greener.
More accessible environment began to backfire as progression of MS developed more dementia like symptoms and Patti could not be left unattended safely. One level home versus previous two level home really backfired as incontinence became near total for bladder and bowels. Daily accidents nuked the home environment for all especially if occurring during hours of unattended time. Patti was not only unable to help herself but even unable to understand what had happened.
Home assistance or waiver type programs were not applicable because Patti could not direct her own care. Her progressing mental challenges left her unable to even clearly understand where she lived. Intermittently she would even leave the home over night dressed only in pajamas in below zero wind chill winter temperatures. Sadly I had to begin to latch her in her room at night by installing a latch on the outside of her door.
Soon I had to latch her in every time I had to leave her alone. It was ludicrous.
We talked and talked to insure conversations were taking place on some good days. Long term care seemed the only solution for both Patti and me and our daughter.
Daily bowel and bladder accidents and latching Patti in was destroying any concept of family environment. Regular bowel accidents will isolate you from family, friends, and neighbors faster than anything you can possibly do.
Pattis quality of life was non-existent and her personal safety was too often at risk. Falls were increasingly frequent when unattended. Experiments with a catheter failed dangerously as Pattis increasing mental confusion caused her to rip it out for reasons unknown.
We began shopping elder care attorneys for advice.