When is it time for long-term care?
My 92 year old mum has been in assisted living with vascular dementia since 2016, but is now hospital waiting for emerg. hernia surgery. I've been with her from morning till 10 pm, hoping to stave off the hospital and pain-triggered delirium that is so impossible to deal with. She's still on low-dose Risperidone, an antipsychotic, since knee surgery in 2018. It's wonderful, and restores her normal personality, albeit with dementia. When I stopped by her nice little studio flat to pick up some personal items, it became clear that she has never done "her part" of the assisted living dynamic. She's never dusted or cleaned or tidied, only had occasional baths for the first year or so, and said she "cat washed" after that. Over time, it was clear she didn't, and it was a struggle to get her to gradually go to the in-house stylist for a shampoo once a week. Staff helped convince her to have a weekly assisted shower about a year ago, and most recently, morning help to dress. She'd wear the same outfit for weeks if it was up to her. No surprise to all of you. I've noticed that the soap doesn't go down in the bathroom, so she forgets to wash her hands, and she needs to be reminded to brush her teeth. She's solitary by nature, and only leaves her suite for lunch and dinner. She has few /no interests, "reads" the same magazines and books over and over, and watches the birds on her balcony. She's a bit mobile with a walker, but is overweight and weak from lying down much of the day. She's losing her balance. I have been managing everything for her for the past 21 years. She lives 25 miles away, and I see her twice a week, plus any appointments. My 78 year old partner has just been diagnosed with his second type of leukemia, this one expected to be more aggressive than his ongoing first one, and I want to support him. He's brilliant, gentle, but high functioning autistic and very challenged in relationship. (Leukemias are LGL, CLL, if anyone knows them, comments welcome. )
I do not want to take on an extra burden of care for mum, and I expect she'll survive the surgery but will need some kind of residential convalescent care when she's discharged. She's so weak she can hardly shift her weight.
Leaving her home, which she is very anchored to, will be terribly painful for her. I don't want that. But realistically, is a move to long term care inevitable at this stage? She's not disruptive, so hopefully not a dementia ward.
I need some experienced counsel. Thanks for your prudent advice.
The truth is that the time has come when caregiving takes over the family and their own well being, isn't sustainable anymore, is too much of a mental, physical, emotional or financial burden, when one of more family members no long sees caregiving as sustainable, over all satisfying and doable, when care cannot be managed anymore safely.
YOU are the best one to answer this question for your own situation. We aren't you and we all have situations as individual as our own thumbprints. I can only wish you the best of luck in future decisions.
You have every right to decide where your energies will be spent.
1. The Core Standard: “Level of Care” (LOC)
Eligibility for long-term care — especially Medicaid-funded nursing home placement — hinges on meeting your state’s Level of Care (LOC) criteria.
This means the person must need daily, hands-on assistance or supervision due to physical or cognitive decline. The goal is to determine whether the person’s care needs cannot be safely met at home even with services.
2. Medical and Functional Criteria Used
Most states use a combination of Activities of Daily Living (ADLs) and medical needs to make the determination.
A. Functional (ADL) Impairments
A person usually must need help with several of these ADLs:
Bathing
Dressing
Toileting
Transferring (e.g., getting in/out of bed or chair)
Eating/Feeding
Continence
Typically, if an elder needs assistance with at least 3 or more ADLs, it strongly supports nursing-facility level of care.
B. Medical/Nursing Needs
Evidence that the person requires ongoing medical management or supervision, such as:
Regular medication management by a nurse
Wound care or catheter care
Oxygen therapy or tube feeding
Monitoring for unstable or chronic conditions (e.g., diabetes, congestive heart failure)
Frequent professional oversight to prevent harm or complications.
C. Cognitive or Behavioral Needs
For dementia or Alzheimer’s, even if physical abilities are partly intact, facility-level care may be justified if the person:
- Is disoriented to time/place/person
- Wanders or poses safety risks (leaving stove on, leaving home unsafely)
- Is unable to make safe decisions or follow care instructions
- Has behavioral disturbances, paranoia, or aggression that need structured supervision."
Source: ChatGPT5