After six years of navigating complete C-4 quadriplegic life I found myself in need of moving into assisted living two years ago.
I didn’t do any research before moving into the first place with a vacancy. I was just glad they would accept me, with my high level of care. Many assisted living homes are basically retirement homes and many residents don’t need a lot of care.
I had been warned this place was ran by rather negligent management and sorely understaffed, but the contract said ‘24 hour care’ and they had approved my medical records which attested to my level of need.
Rolling through the front door the look on the faces of the staff was a little alarming though. They hadn’t been warned the new resident was paralyzed from the shoulders down.
I taught the caregivers my care on my own. It was difficult due to my inability to gesture, and inability to communicate my care needs effectively because the two men were immigrants from the Philippines who knew limited English. They were the only caregivers and they shared a tiny bedroom in the house.
That first night after they retreated to bed and no night staff showed up I was shocked. I often need help multiple times at night. It was one of the primary reasons my family couldn’t care for me anymore, with my daughter’s new baby and my mom’s illness.
I used a baby monitor so they could hear me call during the day when they were in the kitchen but they hadn’t taken it into their bedroom. After that long, hot night with no fan or water I asked management about the alleged 24 hour policy and the caregivers were told to keep the monitor at night. I hated waking them though and can’t say they enjoyed it ether. They very rarely got a day off.
After they left, the next duo of immigrants arrived- two Jamaican women. Each set of caregivers stayed for 3-4 months. They saw nothing of the U.S. but between those four walls and were on call 24 hours, 7 days a week.
Some became dear friends and took care of the residents well despite these challenges but others were downright cruel, and made the home uncomfortable, a sad factor management would not address.
Management’s exploitation did not end with the caregivers.
As residents the 8-10 of us were charged the majority of our disability checks like the government allowed them, yet we weren’t fed a decent diet, caregivers were stressed and burned out, and the overall atmosphere was very depressing. I always had a roommate: usually a dying woman although I am in my 30’s and in college online. On the third death rattle I began applying for other homes even if it meant moving away from my hometown and family.
Last fall when I experienced dangerous hypertension due to a blocked catheter because the caregivers were angry I had woken them and refused to empty my bag, management hung up on me.
I knew my life was not valued there, and my Medicaid case manager came to my rescue, getting me into the only other local assisted living home.
A Welcome Change
Rolling into Faubush Homes after 15 months at A.C. Assisted Living the quality of my life improved in an instant.
My friends decorated my private room with my posters, pictures and precious things. I pay with Medicaid, which doesn’t cover private rooms, but I’m young and busy and this manager wanted to see me thrive. She could probably see that I would only deteriorate anywhere else in town.
The friendly, caring management made sure all my caregivers were properly trained and worked with my schedule. They insisted I inform them immediately of rude or negligent staff. Every day there was fresh fruit, real juice and home-cooked meals. They even bought my vegetarian staples which I had to buy on my own previously.
Best of all, caregivers worked 8 hour shifts and assisted all 24 hours, arriving rested and ready.
Never again would I call into the void with no response at night as many caregivers had made me do, some admitting to me management had approved their negligence.
It took me awhile to process the trauma the first place put me through. Advocating for regulation in long term care has helped. Filing complaints with my insurance and consulting an attorney about a lawsuit helped. Seeing the home I was in shut down felt amazing.
That’s one less home packed with neglected people. We must report the bad places!
The atmosphere here is beautiful. They make a big deal out of our birthdays, make us feel we belong.
Here I’ve got a couple grandmas, two para buddies and a quad buddy and about a dozen kind and efficient caregivers. My daughter is one of them.
I enjoy the back porch, listening to my smart speaker and smoking my weed, and often having my grand baby over to play. I enjoy working on grad school in my quiet room and having a snack while I watch movies at night.
I’ve looked into opening an assisted living home with a friend and examined some assisted living home budgets. I know these homes can be wonderful places on a budget because I’m at one. These homes can also be awful because there’s so little regulation. No one is checking to make sure there’s adequate staff, care or food. The state is supposed to but the only time they showed up was after a death and the manager had rushed to stock the refrigerator in time and hadn’t let residents speak with them.
A visual comparison of the two managers attests to where their budget goes. One of them has expensive hair, nails, clothes and cars, and it’s not the manager of the nice place I’m at now.
I got very lucky I know and I want to stay here as long as possible. Maybe I would have moved in sooner, had I known an assisted living home could be this good.
I spent my settlement money and all my disability checks on trying to survive for six years. I had to keep a roof over my daughter’s head then too, but now she’s grown with a baby.
Assisted Living is a perfect fit for me now.
My insurance pays for 40 hours of care at home, so maybe I could get a little apartment, but finding a reliable caregiver in my little rural hometown is next to impossible, and 40 isn’t enough, unless I’m OK with being alone all night. I’m not, although I use smart plugs for my air conditioning now and I’ve rigged up a water supply. I still get autonomic dysreflexia and could need help at any time.
I feel safe and comfortable here.
If you’re looking into Assisted Living
I would recommend that you get a good tour of the facility and have a good talk with the administration and look out for red flags.
- Make sure they know all your needs and also sign the contract stating they are willing to meet them.
- Observe caregiver demeanor and interactions with residents.
- Ask to see inside the refrigerator and kitchen cabinets.
- Ask how caregiver shifts work.
- Confirm that night caregivers will be awake and alert. (The awful assisted living home’s contract had made that claim but hadn’t fulfilled it, so make sure they know your expectations.)
- Read through the contract and confirm any questions.
After moving in, keep a detailed record of any negligence witnessed and don’t be afraid to make complaints. This is YOUR home. YOU make both the management’s and caregiver’s income possible. If you private pay it’s around 4K a month here. If Medicaid pays, assisted living homes can require you to chip in with all but about $100 of your Social Security Disability check.
We must advocate for ourselves! The quality of our lives is largely dependent on good care.
May each of every one of us in need find it, even if we must fight for it!