Reflections: Chapter 5 - Finding a Place to Live
Lessons learned from my mom's final years.
This is Chapter 5 in the series. In the Introduction to this series I provided a brief background on the passing of my mom and why I’m writing this. In Chapter 1, I covered my mom’s growing hoarding problem and our attempts to help her out of that hole. Chapter 2 told the story of when Mom’s urinary tract infection made her delirious and how I called the police to check in on her. Chapter 3 discussed aging and medical care, and Chapter 4 dove into some things I learned while helping her through medical issues. In this chapter, we’ll cover a few options for living locations.
Reflections: on Caring for an Aging Parent:
Chapter 5 - Finding a Place to Live
I loved Mom, but we knew, for everyone’s sake, that living with me and my wife wasn’t really an option. During shorter recovery stays with us she ignored some of our basic house rules and acts of common courtesy, which was frustrating. Given our personality, political, and lifestyle differences, having her live with us indefinitely would have been a recipe for conflict. But more than that, I didn’t think my wife and I could provide the physical support and medical care that Mom regularly needed.
I have a great deal of respect for families who can make multi-generational living work. It is not for everyone. If you are an older person wondering why your adult children may hesitate to have you move in, it may be because living with others requires adaptation from everyone. Growing older does not give you a free pass. This is especially true if you’ve been living by yourself for years and doing things you like to do when you like to do them. Living with people is difficult—all parties must be willing to adjust. No one has “earned the right” to be stubborn or stuck in their ways, nor, frankly, is it healthy.
As we sorted through Mom’s house, we were also beginning deeper conversations about independent living and assisted living. She did not want to leave her house, lose her freedom, or pay thousands of dollars per month for care. However, she agreed to visit one independent living place in Austin a few weeks before the urinary tract infection incident. At the time of that visit, she did not want to move out of Austin because all her doctors were there (she had quite a few), and she did not want to find new ones. After the urinary tract infection and rehab, she was open to moving closer to us in San Antonio.
Types of Places to Live In
Here are some of the options we learned about:
Independent living is essentially an apartment complex for older adults who can still do most things on their own. These facilities usually have a dining area and provide activities for residents. Many times, they may also have a doctor or nurses available in the facility. They may also have a full kitchen, to include oven and cooktop, in the apartment.
Assisted living is for those who need help with Activities of Daily Living (ADLs) or Instrumental Activities of Daily Living (IADLs). ADLs are the basic functions of daily life—things like bathing, dressing, toileting, eating, moving around, and getting in and out of bed. IADLs are the broader tasks that allow a person to live independently, such as managing medications, shopping, preparing meals, handling money, keeping track of appointments, using transportation, and dealing with household tasks. Normally, assisted living will have nurses in the facility, and may have a doctor as well. For safety reasons, assisted living rooms do not normally have ovens or cooktops.
What I learned is that many older adults can hold on to a sense of independence longer than they can actually hold on to the practical abilities that independence requires. A person may say, “I can still live on my own,” and what they mean is, “I do not want to surrender control.” But if they are missing medications, falling, unable to manage paperwork, living in filth, or unable to prepare food safely, then the issue is not whether they feel independent. The issue is whether they are safely independent.
Your price for assisted living will usually be based on a base rate (typically determined by the type, size, and location of the room you want) as well as how much help you need from the staff. The more ADLs you can handle on your own, the lower the price. There are usually ADL “levels of care,” or tiers, each with its own price. Some facilities use a four-tier system, some use a five-tier system, and I’m sure there are even six-tiered systems out there. The more help you require with ADLs, the higher your level/tier will be, and the more you will pay on top of the base rate. Unfortunately, it is not always clear what type of ADL care falls into each tier; instead, the tier you fall into it is often based on a holistic assessment and determination by a nurse.
Your ADL tier can also change. It could go up after a major surgery, when you need someone to help you get dressed until your arm gets better, and then it could go back down once you recover. Generally, though, as you age, your ADL needs will increase, which means your price will likely increase as well. Regardless of whether your ADL requirements and costs go up, the overall cost of assisted living, independent living, or memory care will also likely increase annually with inflation.
A nursing home, also referred to as a skilled nursing facility, is focused on intensive, 24/7 skilled nursing care. This is full support with multiple medical staff and orderlies. Though Mom had numerous medical issues, she did not need to go into skilled nursing.
The higher the level of care a facility, like a nursing home, provides, the more efficient the facility must be with their staffing and layout, which usually translates to more communal and open areas where staff can keep an eye on multiple people and rooms at the same time.
A memory care facility is specifically focused on individuals with Alzheimer’s or dementia. Sometimes, these residents may be in fairly good physical condition but still cannot safely live on their own, or sometimes even with others, because of risks to their own safety or the safety of others.
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When we started discussions with my mom about independent living and assisted living, we led with independent living, but we knew that she likely didn’t have the physical autonomy to be able to be there. Once she began to see that, we were able to transition our discussion more toward the support that assisted living could provide her.
One of the hardest parts of this process is that to an aging parent, assisted living can feel like surrender—of privacy, freedom, money, routine, and identity. To the adult child, it can feel like a plainly necessary step. Those two perspectives usually collide. We learned that the conversation went better when we framed assisted living in terms of support rather than loss. Meals. Medication help. Fewer risks if she fell. People nearby. More safety.
With my mom agreeing to explore locations to live in around San Antonio, we went on various websites that rated assisted living places, talked to family members who had walked this road before, and did a ton of research. Ultimately, we ended up narrowing it down to three locations near our home, and we visited each.
Each location did their best to “sell” us on their location. The more they put their sales hat on, the more I was turned off. The more genuine they were, the more I listened. If they were disorganized or late for our appointment, I was unimpressed and wondered if it was a sign of larger mismanagement.
If you’ve never been in an independent living or assisted living facility before, it can be depressing. People sit in wheelchairs, some staring off into the distance, a few doing older-people activities like arm circles and leg raises from their chairs. Very few people look happy. They generally stare at you as you walk by. I’m sure they are wondering if you’re someone’s child or if you’re about to “commit” your loved one to this facility. I should note, though, not all places are like this. In some, the residents would greet us and talk with us about things there—this was encouraging sign.
In the end, we narrowed it down to a place that we were pleased with and that had an immediate opening. In hindsight, we chose the best place possible. The staff were great, the residents were outgoing, and the location was 15 minutes away from our home, far closer than the two-hour drive to Austin.
But even in the past few months, the facility underwent new ownership, then new management.
And this is the trouble with assisted living and independent living facilities--there’s a lot of churn in ownership and management, so today’s best place may not be tomorrow’s best place. It’s hard to figure it all out. The best you can do is stay engaged and communicative with the staff so they know you’re paying attention to what they’re doing and how they’re treating your loved one. You can always move to another facility, as most are on a month-to-month lease, but that means doing more research, visiting other locations, and moving.
After Mom passed, I revisited her assisted living facility to pick up some mail. I thanked some of the staff there who had a positive impact on Mom and told them how grateful I was for their kindness and support. We talked about how hard it is to find a good facility, and I asked one of the staff members what they would do if they had to choose a facility for their loved one.
“I had to put my dad in a facility,” he said, “and despite being in this industry, I ended up having to move him because I realized we made a poor choice initially. My biggest advice is to go visit the facility numerous times and at different times of the day. If the staff have good attitudes and you see them around at all times, day and night, that’s a good sign.”
How to pay for It
Aside from the overall change of moving out of her house and losing some of her freedom, Mom’s biggest concern about moving to assisted living was the cost. The average cost in the U.S. for AL is about $5,500 per month, or $66,000 per year, though prices vary widely. It is expensive. And that’s just for base-level care. Depending on the additional ADLs you need help with the price will go up hundreds of dollars per month. The figure also varies based on location and quality of care.
When it comes to independent living, assisted living, or memory care, do not depend on the government to pay for this. Know this: Medicare does not cover assisted living.
Medicaid, however, might cover assisted living costs. Like most things regarding insurance, it’s complicated how and what they’ll pay for. Every circumstance is different. As I understand it, there are income limits and asset limits for Medicaid to be able to pay for assisted living. Your income must be at or below the poverty level, and you cannot have more than $2,000 in assets—this includes your home and bank accounts.
There are ways to prepare for this, but it’s not simply as easy as transferring your loved one’s assets to another family member, because Medicaid and the IRS pay attention to this. You should definitely talk with a financial professional to see what options are available to you.
To see what Mom could afford, I would need to understand what finances looked like. We’ll cover that in Chapter 6.
Advice
When it comes to choosing an independent living or assisted living location:
Visit many locations.
Visit at different times of day.
Ask about staffing turnover.
Understand the pricing structure and how care levels affect cost.
Ask what happens if care needs increase.
Ask how often rates increase.
Do not let a polished lobby fool you.
See what activities they offer.
See what the dining area looks like and what food options are available (and what the actual food looks like!).
Watch how staff interact with residents when they don’t think they are being evaluated.
Proximity matters more than you think—being close enough to visit often is a real advantage.
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