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The very real need for trusted advisors in navigating eldercare




Betty is a very mentally sharp 93 year-old who, up until last month was driving, taking care of her home that she owns outright and has lived in since 1965, plays cards once a week, goes to church and grocery shopping on her own, goes out to lunch with friends often, and takes care of her beloved cat, Toby. Betty’s husband, John, passed away suddenly three years ago but Betty has made the most of staying in her home and living her best life.


Betty has two daughters and a son. Kimberly is divorced and has three adult children. Kim lives three miles away from Betty and spends time with her mom often. Patricia, the oldest, is single, retired and lives in Connecticut. Patricia is Betty’s health care power of attorney because she’s the oldest child, and before she retired, she was an emergency room nurse. This was set up before John Sr. passed away.


John Jr. is the youngest and he lives in California. He has very little to do with Betty on a day-to-day basis, but he helps her keep track of her bills because she let a few things slide after John Sr. passed away. They finally signed the paperwork to make him the financial power of attorney this past Christmas when he came east with his wife and their two young children. Betty calls him about once a month to discuss her bills and he usually rushes her off the phone because he’s so busy with his high pressure job.


Can anyone guess what happened to Betty last month? She tripped over Toby and fell in her living room. She didn’t have her phone with her but thankfully, Kimberly had purchased a life alert button for her mom and Betty was able to call for help immediately. When the ambulance arrived Betty was disoriented, unable to bear weight and in a great deal of pain.

They took her to the local emergency room and asked Betty if there was anyone they could call. She told them to call Kimberly who rushed right over. Kim called Patricia and John to let them know what was going on. Patricia was on a vacation in Egypt and said she would make the five hour drive down to Philadelphia when she got back from her trip. John told them to keep in touch and he would come out if he could manage it.


In the meantime, Betty is admitted to the hospital with a fractured hip. The doctors have her sign off on all sorts of tests and procedures because her insurance is pretty good and she is of sound mind. She has a combination of Medicare and a supplemental insurance that John Sr. had set up. She hasn’t changed it since then and each year just renews it because it’s easiest.


Betty is only on a few medications including a statin and a thyroid medication. She has been healthy for most of her life and has always been an avid walker. She has never spent a day in bed or at the hospital except for when her children were born.


Kimberly goes to see her mother immediately after the fall to see how things are going. Betty has decided to have a surgery on her hip for optimal healing. Kim agrees that it’s the best option that the doctors have offered. Betty has her surgery the following day. She seems to be recovering nicely at first but is frustrated with her inability to stand, walk or go to bathroom on her own. Her wound from the surgery is very painful.


The day after the surgery, the social worker from the hospital tells Betty and Kimberly that Betty will need to be transferred to a skilled rehab to continue her healing journey. The social worker is very nice but doesn’t offer any suggestions on where to send Betty other than giving them a printed out list of 50 different skilled nursing rehab facilities in the area. Betty knows of one that her friend Ann went to and was pleased with but they come to find out that particular one doesn’t have an available bed and Betty needs to be moved the following day.


They settle on one that is close to Kimberly’s home but they look online at the reviews and find they are horrible. By the time they inform the social worker that they don’t want that one, Betty is already being transported there. They decide to try to make the most of it and Kim promises Betty that she will do her best to get her transferred as soon as possible.


Betty is losing steam and though everyone is nice at the rehab, it’s a little bit dirty, and she spends most of the day sitting in a hospital bed. The therapy is incredibly painful and her wound is not healing. In fact, she is starting to feel sore on her bottom from sitting in the same position for so long and the doctor told her she now has a pressure wound. She’s not sure what medications they are giving her as there are way more pills than she usually takes, and the food is pretty terrible. She isn’t eating much and has stopped even finding solace in her crossword puzzles, or books. Her roommate keeps the television on full blast all the time and Betty just stares at the stain on the ceiling for most of the day when she’s not drifting in and out of a painkiller induced sleep.


After two weeks Patricia finally shows up. By this time, Betty has declined rapidly. She has lost weight, she is confused and disoriented from the pain medication they have been giving her. Her wound became infected and they put her on an IV antibiotic. Betty is now disoriented enough that she is convinced she can get up and walk and fell out of the bed twice already. She has become non-compliant with therapy and though Kimberly has been at her mother’s side, she can’t be there 24–7 and she doesn’t really know how to intervene.

Patricia asks her sister why they put mom in this horrible place. She starts making demands of the nursing staff and therapy department without much success. It’s becoming clear that they put Betty on a bunch of additional medications that she probably doesn’t need but Patricia is having a really hard time getting in touch with the facility’s physician who only comes in for rounds twice a week and never returns phone calls. The nurses at the rehab are overwhelmed and none of them seem to actually work there.


Because Betty has become non-compliant with therapy and has plateaued with her progress, her insurance days are numbered and they are looking to discharge her from therapy in three days. This means that she can stay in a long term bed, private paying $600 a day, go home with 24–7 care at about $720 a day or she can go to assisted living because she cannot live alone without care. Now that Betty is deemed unable to make her own decisions because of her mental decline, it’s up to Patricia to make the decision. Kimberly is adamant that mom go home with care, but Patricia knows that there are steps to get in and out of the home and mom’s bedroom and full bath are on the second floor. It’s just not practical to take mom home right away. They come to the conclusion that they need a respite stay at an assisted living.


Kimberly and Patricia have a big fight about where Betty is going to go and Kimberly tries to convince Betty to make her the Power of Attorney because she lives closer and Patricia is going to make Betty move into assisted living. Kimberly starts calling lawyers behind her sister’s back but the clock is ticking and Betty really can’t make any decisions about who is the better advocate in her current state.


In the meantime, they have three days to shop and decide on a place. Patricia gets online and sets up a few tours and invites her sister to come along.

Then, out of nowhere, John arrives, unannounced. He’s furious with both of his sisters for letting mom get this bad. The three of them decide to go on a tour at nice assisted living close to mom’s church.


These are the three people that get to make the decision for their mom with Patricia and John being the ones who can legally do so. They fight the whole tour, snipping at each other and trying to pretend they agree while the nice sales director is showing them around. John thinks the community is dark and depressing. Everyone is so old and sick. Kimberly agrees that it’s not what mom would love. They don’t even have anyone who can play cards and there isn’t transportation to the church on Sunday anyway. Patricia convinces them that it’s only temporary and that in a month or so mom will be back home.


Patricia decides that this is the place and they set up a transfer for a respite stay, only to find out that the assisted living doesn’t provide a wheelchair, hospital bed, or any medical equipment. Thankfully, the social worker at the rehab is able to order some equipment for Betty, but they will have to pay for it because insurance only covers some of the cost. John doesn’t want to sign off on the charges because he feels like he can get a better deal, which he finds he can’t. This delays the discharge and now Betty will have to pay $600 a day until she can be transferred safely.


The kids are sure that Betty will be walking soon and has always taken her own medications so she shouldn’t need too much care, since this assisted living charges extra for care and medication management. The nurse from the assisted living does an assessment at the rehab and determines that Betty is not capable of taking her own medications at this time and she will need a high level of care because she still can’t even transfer on her own and is almost non-weightbearing. The nurse also informs them that they will not be able to prevent Betty falling because they don’t provide one-on-one supervision and Betty is still convinced that she can get up on her own. John is furious at the price point which ends up being thousands more than Betty’s monthly income and decides to call five other places and goes to tour on his own to find that every place costs about the same. Kim contacts some home care companies and finds that one-on-one care 24–7 is about $720 a day for the least expensive option. That’s $21,600 a month. The other option is that Kim stay with her mom for 12 hours a day and have a caregiver overnight. This still will cost $360 a day.


Betty has some savings, social security, and a bit of her husband’s pension. She also owns her home outright. Her monthly income is about $3500 a month. The cost of the assisted living, for a studio, is going to end up being about $7150 a month with care, medication management, and additional respite fee. If she wants to bring Toby, she’ll have to pay $1000 deposit also. This doesn’t count what she will need to pay for her supplemental health insurance and co-pays that may arise as well as the medical equipment and her home costs.

John and Kim don’t want mom to have to give up her home just yet, so the kids decide to move mom into the assisted living that Patricia has chosen on a month-to-month basis and then they will revisit the options. Betty’s costs at home are about $2000 a month, so her income is really only about $1500 a month. This leaves a windfall of $5650. John knows that Betty’s savings account has about $80,000 which won’t last very long at this rate, but will hold them over for a little while.


The sheer overwhelm of all this new information has Betty’s three kids at each other’s throats about money, mom’s health, what’s best, and what about Toby? Kim has been going in to check on Toby daily but she can’t take him home because she has two dogs. The other two aren’t going to take Toby out of state. They aren’t sure that mom is ready to take care of Toby until her mental and physical health improves but they can’t rehome him yet because that would just kill Betty.


Then, just as they are getting ready to transfer mom over to the assisted living, the nurse decides that Betty really isn’t appropriate and will need to move into the memory care. She will have a roommate and the cost will be even more. They don’t really have much choice because it’s still going to be less than keeping her in the skilled nursing facility. Kim is really worried that her mom will decline even more if she moves into the memory care so the family pulls out of the contract signing and stalls once again while they try to figure out what is best for Betty.


The moral of this story, though fictional, but might as well be true, is that this family didn’t really know the first thing about what was happening and how much it would cost which led to a lot of stress. Just because they had powers of attorney, and Patricia worked in the health care realm, which is more than some families have, doesn’t mean they know the first thing about the process of dealing with an elderly parent that is getting passed around the system. They weren’t prepared for how quickly Betty would decline and what that meant for her and for them. The biggest mistake they made, out of many, and that many others have made, is that they didn’t really have an experienced advocate to help them through the process.


Where does one find an experienced advocate, you might ask? We call them geriatric care managers and they are worth every penny. Either that or placement agents that will charge the assisted living a referral fee and not charge the resident or the family anything. Some elder care attorneys also have a care manager that can help advocate for you or your loved one.


If Kim, Patricia and John had found a geriatric care manager, they might have learned that John Sr.’s veteran status means that Betty will qualify for aid and attendance, which will help cover some costs for care. They might also have had a better experience getting mom into a non-agency staffed rehab that would lend to improved outcomes for Betty. They might have been able to help get mom’s house ready for her to transfer directly home with care, instead of going to assisted living, or they could have had some resources to help get mom’s house ready to sell, if that’s the direction things would have had to go. All of the situations where the kids felt helpless could have been better handled by a professional.


If you or someone you love is struggling with an elder care emergency, I highly recommend finding a good geriatric care manager or trusted advisor that can help navigate the system. Feel free to drop a comment if you are seeking suggestions from me.



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