Thinking of moving my mom out of care facility

smcgrth

My mom, 87, is in the later stages of Alzheimer's. She was never formally diagnosed, but it has been at least a decade and probably closer to 15 years since she first started noticing she was having memory issues. Unfortunately her concerns were dismissed as just normal aging memory loss.

She lived with my brother until about 18 months ago, when she started wandering in the middle of the night, became incontinent and refused to shower etc. She hallucinates all of the time and lives in an alternate reality where her parents are still alive and her children are young. She doesn't know who I am and believes her and I work together feeding hungry children and caring for the downtrodden. She is quite chatty and likes to laugh, and make me laugh, but says a lot of non words. She currently goes to bed around 6 pm sleeps through the night and gets up around noon. She takes trazodone in the evening and seroquel as needed. She takes no other prescription meds, and other than Alzheimer's, has no other diagnosed health conditions. She is currently living in her second facility and it has been a bit of a nightmare. I was completely unprepared to navigate the insanity of the elderly care system.

Initially, It was the hard sell from the facilities that was off putting, but the most shocking was the predatory nature of the hospice/home health agencies. I also had no clue how dependent the facilities were on these agencies. My mom was on hospice for a year, discharged and now receives home health services, basically a nurse visit once a week. There were several conflicts between the agencies and the owner of the first facility. I was often stuck in the middle. Although there where many issues, It was the owner frequently switching agencies and constant staff turnover, that led me to move my mom to her current facility, two months ago.

I was hoping things would settle, but no such luck. Just in the last 3 weeks, they've had a Covid outbreak, lost my mom's medication, lost this months rent check, both of which they found, but not before insinuating that I never paid or delivered her meds. Just over a week ago, the owner called me to let me know, they had called 911 because my mom was vomiting, her blood pressure was really high and she was taken by ambulance to the hospital. Turns out it wasn't my mom, but a different resident. To top it off, today I got a registered letter, letting me know my mom's monthly payment was going up $1000 as they have determined she needs a higher level of care. This was the same bait and switch the owner of the first facility pulled. Both said they would never raise their rates, even as my mom's needs increased. I was very clear about the severity of my mom's condition, that she needed help with all of her daily living tasks, and can get agitated and combative, but they insisted the rate would never go up. It's not so much the increase that bothers me, but the shadiness.

There is so much more, but it would take too long, so what I am really trying to get at is, is it realistic to maybe bring my mom home? My husband and I are both retired, my daughter, her partner and my 13 year old granddaughter live with us. My daughter currently works as a nanny, but is open to the idea of caring for my mom. We also have the ability to make the necessary modifications to our home.

When my mom entered her current facility 2 months ago, she was walking, she would do this little shuffle dance, and would sing "Boop Ditty!"Now she spends her waking hours strapped in a wheelchair "for her own protection."

terei

You clearly have had bad luck with facilities. I’m not sure what you are spending a month, but it sounds as if you would be willing use the money to pay your daughter to be her main caregiver? She may be susceptible to burn out pretty quickly (all of you, frankly) . With both you and your husband caregiving at night. You are describing your mother to be in the last stages of life so I would expect that this care would not be long term. I would also try a new hospice organization that was recommended by someone who has used them. A good hospice organization is invaluable and I would attempt to find a good one. I would certainly not be spending too much money on ‘modifying’ your home unless you feel it would benefit you and your husband also.

I honestly would be more likely try to find a better facility than to try to do this at home, but I am painfully aware that I dont have the skills or the emotional bandwidth to attempt this

SDianeL

most people can’t care for someone with dementia 24/7. If she is incontinent and wheelchair or bedridden it takes 2 people to change her and lift her. You would probably need to hire more help than your daughter.

harshedbuzz

@smcgrth

What you are proposing to do is something my mom wanted to do with my dad. He'd been placed primarily because of dangerous behaviors; her plan was to move him home once he was beyond that, but he passed before she set things up. TBH, even with hired help I don't think she was up for turning her lovely home into a single-bed nursing home.

A couple of thoughts. Who would be funding home modifications and paying your daughter to be her caregiver? If your mom is on Medicaid (and I doubt it based on the hard-sell at the MCF), there may be a program in your state to facilitate this that would include pay, insurance and other benefits for your DD as an employee of a licensed care company. Otherwise, you would have to consider your DD's lost contributions to her own SS, retirement planning, health insurance, and workman's comp and whether what you're proposing is best for her and her child.

My other concern is your mention that mom is "strapped in a wheelchair". In most places that is considered the use of restraints and is generally not legal. I would look at your state's licensing laws for facilities and explore this. This comes up a lot as many folks here wish they could keep their LO safe using bed rails, seat belts, etc. and are frustrated that facilities can't.

HB