4 Common Traps To Avoid in Making the Move to Assisted Living
I long, as does every human being, to be at home wherever I find myself
Maya Angelou
About two months after my husband moved out, I noticed an awful smell coming from somewhere in the kitchen. I spent a whole week trying to locate the source. My kitchen cabinets have never been so clean. Naturally, all it took was getting half a dozen nine year old boys over for a birthday party to find eight dead baby possums right outside my kitchen window.
Staying in the house after my divorce has been hard. Not only is the house bigger than I need, but something is always breaking. I’ve had to contract with a small army of people for upkeep and maintenance. Don’t get me wrong, I love the house but the only reason I haven’t traded it for a condo or apartment is because my kids have blackmailed me. Emotionally. They said they want “one thing to not change.” So there you have it. Guilt rules.
They’re proof of the fact that we attach a lot of meaning to our homes. It’s in our DNA. Getting back home is the focus of literature going back to Homer and The Odyssey. So, it’s natural that we do crazy things to keep our kids, ourselves and our parents in the place that feels most like where we belong. It’s captured beautifully when we say to ourselves, “carry me out feet first!” We don’t want to leave our home.
The problem is that our family dream homes — the ones with space and yards and stuff — can also be hazardous, isolating and tons of work to keep up. If it’s like that for me, single at age 47, you can imagine how much harder it is for someone who is frail and (if this is even possible) foggier in the head than I am.
This is, at least partly, why independent, assisted living facilities, and continuing retirement communities exist. They can be a good option for solving problems like isolation, danger and the hassles of home ownership. But knowing that these options exist and pulling the trigger are two very different things. Even if you find the most perfect place and your mom is fully on board, it’s likely that moving will be really hard on both of you. It just takes a long time for human hearts to process change.
There is another drawback besides the emotional one. These options cost a lot. Assisted living facilities charge in the range of $40,000 – $50,000 a year for a unit. So, unless your mom is one of the very few people in the U.S. who has insurance for long-term care, there’s no one to pay for assisted living except her or you. In most cases this isn’t covered by traditional health insurance, Medicare or Medicaid.
There’s no question that these options have a lot to offer. For example, most facilities provide communal dining, laundry service, transportation, and an environment that’s designed to make getting around easier. If you imagine all of the conveniences of apartment living — like no yard or house upkeep — and then add in a bunch of things specially designed for frail, older people; like planned social activities, a built in community, and a staff who are keeping an eye on your mom or dad and/or actually helping with a few hands-on tasks… that’s effectively what assisted living is.
Determining whether your parent really needs to move into some other type of home — one that provides support and safety like assisted living — this is very hard. It’s highly charged and there is no formula or easy answer. It’s a process of weighing the options and the trade-offs.
Having said that, I feel strongly that there are four traps I want you to avoid.
Don’t act out of desperation
If you google “should my parent move into assisted living,” the first FOUR search results will be for sources of information from organizations that make money off of referring people to expensive assisted living facilities.
Assisted living is big business, not just for the facilities whose main objective is to fill their buildings, but for the agencies that have popped up to extort hefty referral fees from these buildings. Desperate, crisis-driven families who call these agencies with the expectation of getting counseling and unbiased information are really only getting a thinly veiled sales pitch.
Despite their highly problematic business models, these agencies (e.g., A Place for Mom) cropped up to solve a real problem. That there’s no place to turn for advice and information on the best assisted living facility for your mom or dad. Nearly everyone with whom I talk describes this process as a nightmare — where at best you are being handed a list of dozens of buildings with no reference point for quality or cost.
Many women tell me that the informal networks of trusted girlfriends they use as benchmarks for other important life decisions — like which pediatrician practice to choose — are largely absent in this situation. I think this is because — in part — we are often dealing with parents who live far away from us. I could ask my neighbor in Washington, DC what she would recommend in California where her parents live but I need a place in Florida where my parents live.
Don’t overlook getting unbiased professional help
I am continually trying to figure out how we can create a valuable network to help each other. But, in the meantime, I remain convinced (see previous post on this topic) that hiring a geriatric care manager — even for some basic information and referral services — is a wise investment. That person can help you figure out whether a move is necessary, how to delay or prevent it, or the best place to move if necessary. And, when you consider that you could spend up to $50,000 a year on assisted living, a $200 – $300 unbiased consultation from a market insider is well worth it.
The other advantage I’ve heard from friends, time and time again, is that your mom or dad is much more likely to listen to and work with someone outside the family. You know how you’d rather eat nails than be in charge of your child’s college application process — same thing applies here. Sometimes certain intra-family decisions are really loaded and people get suspicious about each other’s motives. Your sister doesn’t live in town with your parents so she thinks it’s unnecessary to move them… but you live there and you KNOW that any minute your mom is going to turn on the gas stove without igniting the flame and fill the house with gas.
So, PLEASE — before you do anything — check out the listing of care managers on the National Association of Professional Geriatric Care Manager (NAPGCM) website and interview a few.
Don’t expect assisted living to solve all your problems
It’s important to understand that assisted living facilities are not nursing homes. This is good and this is bad. I could write book on this topic alone. But, for now, I’ll recommend Jane Gross’ NY Times blog for another short read on this topic. It’s content from her wonderful book reviewed on my resources page.
With a few exceptions, the nursing home model is a highly regulated institutional setting with a long cultural history of providing basic safety and skilled care at the lowest possible cost for the public program Medicaid. Assisted living evolved in opposition to this model and largely prides itself on giving residents some level of self-determination and comfort.
But as a result, assisted living organizations take a fairly narrow view of their role in residents’ lives. They leave a great deal of care management, organization and intensive personal care to families. So, for example, in assisted living it’s quite common for a family to hire, pay and manage a personal aide to provide additional support for an older adult or to have to engage in heavy management and coordination of care when a hospitalization occurs.
You can consider alternatives that may delay or prevent assisted living. Among these are modifying your parents’ home to put bathrooms and bedrooms close together, changes that make it easier to get around. You can hire people to help at home — which brings another whole array of questions and issues worthy of a separate blog posting. But it’s valuable to consider alternatives like adult day care or bringing in a college student to do some driving or light housekeeping and socialization, especially if it can keep your parent’s life stable for a little while longer.
Don’t feel guilty
There is not a perfect solution that you’ll find if you just work harder or know more. It doesn’t exist. There is no option that prevents really hard choices. And, unless your mom or dad is an enlightened being, some suffering is inevitable.
It’s hard to watch someone you love struggle and it’s natural to want to fix it. But please know only a small amount of this situation is actually controllable. There are just too many forces — the way our society treats aging, how your family relates to each other, what the choices are in your community — to be wrangled by just one person.
Half the job is showing up, and you do that by getting help from unbiased professionals, checking out the options, balancing everyone’s opinion, and then at the end of the day weighing which option is least likely to contribute to loneliness, helplessness and boredom.
The other half isn’t your job.
I was lucky to be able to choose a place two blocks from my Mom’s condo so her network of friends/church/activities could remain somewhat intact. We still needed to hire someone to do housework and laundry. There is minimal support at night so if there are medical issues, you will need to be involved right away. I had to do the move alone while she was in a rehab facility and fortunately the apartment that was open had a lot of windows and a nice view on the first floor. And, her cat could move in with her. I arranged the furniture as closely as I could to her condo so it would look like “home” when she arrived. She mourned the loss of her “real” home and her, independence and ability to drive but eventually was happy there and made many friends. When she had a catastrophic brain bleed, I moved her back there from the ER with hospice care. We even had her funeral mass in the small auditorium there so her more disabled friends could attend easily. I was very happy with how everything turned out. On the minus side, I was paying for my Mom AND her sister to be in the same facility — not in the same room. I am a physician and it took half of my income for a LONG time. And I have young adult children who were finishing college/getting established during those same years. Medicaid will help in some instances and it will save many families who can’t otherwise afford it.
I moved my mother an hour closer to me 18 months ago. She is still angry and determined to hate the lovely assisted living place and nearly everyone in it. My sister has not visited in a year and though she calls our mother, she rarely if ever checks in with me. Moms dementia precludes her ever living alone again and there are no other options in the small rural town she called home. I am exhausted, not so much from the physical and time consuming demands, but from having to carry 100% of the responsibility myself. My father in law is in memory care and my mother in law is cognitively slipping. Their 3 other children are in the wind, except for passing judgement. We are pretty tired, but so grateful for the local care givers support group we attended for about a year. This caregiving stuff is not for the faint of heart!
My sister placed my mom in one of these places, I’m having problems with being able to get her and spend time with her unless it’s there..She is not her only child and I feel that it wasn’t her decision alone to make, she knows my mom doesn’t want to be there not with her! I am the one that she wants to be with, she knows it!! It’s all about control..I’m needing help with knowing how to get my mom from there and have her to come live with me..When I did get to take her out, the lady that owns the place told me that if I didn’t bring her back that they could get me for kidnapping..How was my sister able to do this with my consent or my brothers..And how she she able to stop me from taking my mom out of there, even out for a ride or anything…Can anybody tell me how to go about any of this, As long as I’m able to care for my mom she shouldn’t have to where she is, and it shouldn’t have been my sister’s choice alone
You may want to check and make sure your sister didn’t get your mother to make her POA (power of attorney). Your mother should be able to choose where she wants to live. My mother lives with me and while it is hard, I have enjoyed the time together. Good luck. Also, talk to an attorney to see what the law is and your options.
I REALLY needed to read this. I have been struggling with the decision to move Dad to a NH for quite some time, and the guilt is overwhelming. FOr starters, I honestly don’t want to endure relocation trauma again. It took Dad forever to get used to his current ALF, and there are a few nurses there that he absolutely LOVES. I feel like I would be taking something away from him if I moved him out of there,
…BUT his needs are changing. Dad has COPD and is legally blind. He suffers from terrible anxiety and mild dementia. At the ALF they let him ride his motorized scooter around. He probably wouldn’t be able to do that in a NH, and he refuses to use a wheelchair. The NH’s I have toured are DEPRESSING!!!!! They smell bad. I see a bunch of pitiful seniors sitting in wheelchairs in their own excrement aimlessly staring out of the window. I couldn’t live with myself if I left Dad there.
So, at 40 years old, with a thriving career that is dwindling daily, I’m considering moving Dad in with me. I don’t have much of a life now as is (it takes two jobs for me to pay for Dad’s care and my own) and those places are awful. I’m trying to have an open mind, but sometimes I cry that I feel like the only way to be free from the pressure and for Dad to be free from the pain of this transition is … the end. How awful is that?
I think I’m suffering from depression as a result. I can’t think. I feel out of control, and I’m constantly on the verge of tears.
Dear TinyBlu,
I feel your pain. My Dad has Parkinson’s, his wife died two years ago, and he’s been living alone. It’s incredibly depressing to see him going downhill faster all the time. He lives an hour away from me. I’m the only one in the family who sees him; I go over every weekend to do what I can for him.
I’ve also been struggling with the decision to move him to an assisted living place. I can’t believe how expensive they are!! When I think of my Dad living in one of those places, my heart breaks. I’m single, 57 years old, work full time, and don’t have much of a life. I don’t own a home and the place I rent is small. On the one hand, I could rent a larger place and have my Dad live with me. On the other hand, I’ve lived alone most of my life because of my own issues with depression and anxiety. I love my Dad very much but I know my mental health will suffer if I move him in with me. I’m also afraid of becoming frustrated, angry and resentful. I also think about “the end” and I feel horrible about this. I go back and forth several times a day trying to figure out the best solution. The anxiety over this is consuming and exhausting; it’s on my mind practically every minute.