What do we do as middle-aged kids in the middle who are trying to parent our children, even when grown, and find ourselves suddenly responsible for taking care of our aging parents who want to remain independent and age in their own homes? The situation can trigger battles between the generations over money, about not taking medicine, and with the aging parent who tries to remain independent but forgets to turn off the range, leaves the refrigerator door open, eats the wrong foods, or tries to make it to the bathroom alone in the dead of night and falls.
Amanda Lambert and Leslie Eckford, authors of Aging with Care: Your Guide to Hiring and Managing Caregivers at Home (Rowman & Littlefield), are big advocates of aging in place.
In this final Q & A segment, the authors address how to talk to elderly parents about bringing in help, what is fair to expect a caregiver to do, how to know if that caregiver is doing a good job, how to indemnify a caregiver who is not with an agency, when is the right time to consider assisted living or a long term extended care facility, and much more.
Q: What should be said in any talk with the elderly parent about bringing in help, when they resist? When do you take away their decision- making ability for what you perceive to be their own good? And when is that tipping point?
Answer from Amanda: We recommend being kind, respectful, but honest in communicating with an elder about what your safety concerns are and the likely consequences of poor decisions that jeopardize their safety. It is important to try and empathize with what you may consider an unreasonable point of view. Everyone is presumed to have capacity unless a court determines that they do not. To take away someone’s decision making ability would require petitioning the court for guardianship and that is a big step to take. States vary in terms of what they require for a person to be deemed incapacitated. And even in that case you can’t literally make someone do what they don’t want to do, so consider this step carefully.
Q: So, you hire a caregiver, but what are fair expectations for what the caregiver will do—and not have to do? Are food prep, laundry, light cleaning, massages, dispensing meds all part of their duties?
Answer from Amanda: We talk in great detail about this subject in our book, and provide a couple of examples of how different states are with regard to allowable tasks. Most care providers will be expected to prepare meals, do light housekeeping, provide transportation. Medication dispensing will vary state to state. You must check your state to find out what aides are allowed to do and what they are prohibited from doing. We have never heard of a caregiver providing massage and it is not something we would recommend. It would be better to have a licensed massage therapist if that’s a desired request.
Q: How do you know if the person is taking very good care of your elderly relative? Should you ever consider security cameras to protect valuables and keep an eye on your parent?
Answer from Leslie: In the beginning of managing care for my parents, they and I would have scoffed at the idea of using security cameras in their home. They would have resented the intrusion on their privacy. Sadly, we were victims of crimes by some unscrupulous caregivers. Now, we have security cameras inside and outside. It is also a good idea to ask family, friends and neighbors to drop by unannounced and contact you if they note anything that makes them the slightest bit uncomfortable. And, if you have suspicions of any fishy behavior, call Adult Protective Services. Trust your instincts!
Q: How do you indemnify a caregiver if one is not hired through an agency?
Answer from Leslie: There are a number of ways to go about this. Unfortunately, some are more costly and time consuming than others. We are often in a hurry in the hiring process and we can mistakenly convince ourselves that we can skip this step because we just know this caregiver is a great person. I know, because I did that myself! Don’t do it! You can go online and find websites such as My FBI Report that for a fee will give your caregiver their FBI report. Remember, you must have an individual’s permission to do this kind of check. I also recommend that people call their local law enforcement. Some of the best advice that I got was from a police detective who showed me how to look up the publicly accessible court records online for free. If your candidate is a local person who has not lived other places, you may find out a lot that way. I am a big fan of drug testing, at the time of the interview and make it known that employment with you may require random screenings during employment. This is the best way to have real time information about someone’s status. Many free-standing medical offices offer this testing at a reasonable rate and the results return quickly. It’s worth it.
Q: When might you have to move your loved one to assisted care or a long-term care facility, if ever?
Answer from Amanda: This can be a very stressful and difficult decision to make. I have a client now whose parents are just barely making it in their own home, but refuse to leave the home or increase care provider hours to help them remain independent. If an elder is open to the idea of moving to assisted living, much depends on need and cost. If the cost and complications of providing private caregivers starts to exceed what assisted living would cost, then it might be time to consider assisted living. Also, if a caregiver is not allowed by state regulations to provide certain services that are needed on a consistent basis, then it may be time to consider assisted living. If the elder is a two person assist, then long term care may be needed since most assisted living communities will not accommodate a person who requires two people to transfer. Utah requires that the resident be able to vacate the building in an emergency with one person assisting.
Q: What about legal steps to have in place?
Answer from Amanda: Health care power of attorney documents are critical. Rather than wait to prepare these documents during a crisis, complete them when everyone is calm and clear. If you already have these documents make certain they are up to date so that everyone knows who would be the surrogate decision maker if needed, and what the person’s end of life care decisions are. Sometimes a trust can be helpful so that a responsible family member can take over financial affairs if necessary. In lieu of a trust, make certain that a family member is on all accounts. We recommend meeting with an elder law attorney to plan out financial and healthcare documents.
Q: What about dealing with siblings when opinions about what to do differ?
Answer from Leslie: We have worked with many families of all sizes and shapes. There are some families that have consensus. More often, however, we see that one sibling takes the lead in care management or the responsibility simply falls on them by default due to proximity to the parent or birth order. It is not unusual for the sib holding the bag of care management to wonder, hey, what about the rest of you? She’s your mother, too! When are you going to help out? It can become all too easy for the non-manager siblings to criticize the decisions made by the adult child who takes the manager role. All the issues that we grew up with (control, jealousy, resentment) may come storming into this scenario. It can get really ugly when people sneak in to change Power of Attorney forms with an unsuspecting parent or get restraining orders against another sibling. Thankfully, this can be avoided. Regular family meetings are very helpful, if difficult at times. Open communication and support are skills that can be strengthened. It may help to have a geriatric care manager or another objective third party present at family meetings to increase productive outcomes.