Advice to Future Family Caregivers … Protect Yourself

Yesterday,  I wrote a satirical Facebook post about the woes of being a family caregiver.  It read:

“Ladies, if you have an aging husband or one who insists on bringing his sickly parents to live with you, get to know your local bartender VERY well. Better yet, start your own bar so you will have handsome, hard bodied young things to look at on a regular basis. Besides, you will need to drink a lot. Do you know what it is like when you have to put handicap rails all over your bathroom? Or what your house will smell like when adults have diarrhea and can't make to the bathroom quickly. You home will be too depressing for words.”

While much of that post was all in good fun, there was an underlying truth. Being a family caregiver is not easy and certainly not for everyone. Those of us who have been family caregivers often have very mixed emotions about our decision.  There are decided advantages to caring for a loved one in the home in terms of the quality of time spent and care given.  However, too many of us were ill prepared for the legal and financial aspects of providing long term care.  As the song says, “sometimes love just ain’t enough.”

From an emotional and psychological standpoint there is little that can prepare anyone for having to feed and bath the parents who once fed and bathed you. Nor are most of us prepared to have our parents look at us as if we are complete strangers one moment and with resentment the next because they cannot understand why their child is telling them what to do.

From a financial perspective, most of us may have developed a plan that included saving for a new car, education or for a home but in the majority of case those plans did not consider the potential need to remodel a home for the special needs of an elderly parent, paying $18-$20/hr for respite care or, paying for the special transportation of persons who are immobile. The average working class family has little wiggle room in their budget for hiring an ambulance to take a loved one back and forth to doctor appointments or for installing walk-in baths or stair lifts. These are expenses that are not covered by Medicare or most health insurance plans.

Yet, the most difficult and heart-wrenching challenges of being a family caregiver are the legal ones. When and how do you decide that you have to take over managing the financial affairs of your parents?  This is not a prospect that most people with good intentions look relish.  However waiting too late to make decisions about power of attorneys and guardianship can have disastrous consequences.  While there are some legal protections in place for spouses, there are few for adult children or other adult family members when it comes to caring for a loved one.

In 2004, my mother was diagnosed with Normal Pressure Hydrocephalus (NPH); a condition, which left untreated, causes dementia and progresses in the same manner as Alzheimer’s.  Due to concerns about her other pre-existing conditions and my mother’s concerns about the surgical procedure involved in treating NPH, she opted not to have the shunt implant at that time.  Understanding my mother’s prognosis and knowing that without corrective surgery my mother would need long-term care, I began considering all of the options for providing for her care. Based upon our earlier discussions, I knew that my mother did not want to spend her last years in a nursing home, nor did I want that for her.  So in 2005, while my mother was still mentally competent, and after having researched my options thoroughly, I came up with an action plan for caring for her.  Since her condition would impair her mobility, my mother needed to relocate from her multi-floor home to a more manageable single floor residence. In addition, since she did not have long-term care insurance she needed to sell her home, pay off her mortgage and put the money into an escrow account for her long-term care.  That, along with her retirement pension and social security would have been enough to provide for her care. On my part, I had planned to use my 401K savings as a down payment on a home, put in for a job transfer and relocate us both to an area with an overall lower cost of living and in a closer proximity to family members. Unfortunately that is not what happened.

Instead of approaching the situation logically, my mother was not ready to part with her home and make the move in 2005. As a result I spent the next seven years trying to make the best of an impractical situation.  By the time that my mother did recognize the wisdom in my original plan, market conditions adversely impacted real estate values and her house was in need of major repairs.  The end result was that upon my mother’s death, I was left in the position of being without income, savings and not only unable to hold on to her home but my own possessions.

The sad truth is that as a family caregiver you run the risk of not only losing your loved one to their illness but also ruining your health and your finances.

Here are the cold hard facts about being a family caregiver:

“According to the National Alliance for Caregiving and the American Association of Retired Persons, in 2009, 19 percent of U.S. households were providing care for an older adult — some 43.5 million family caregivers nationwide. 

That same survey revealed that 67 percent of those caregivers are women, with an astonishing 55 percent being employed while providing care. The average caregiver spends 19 hours per week caring for her parent, according to the survey.” 

Of those who do end up being caregivers, the financial costs are not often realized. According to AARP,  20 percent of caregivers have to quit work in order to provide care; of those, 31 percent lose their life savings doing so.” 

- See more at: http://thegazette.com/2013/07/17/caregivers-need-care-too/#sthash.7wSfL8Gc.dpuf

As part of their series on family caregivers, The Takeaway analyzed statistics from AARP, the National Alliance for Caregiving and the Family Caregiving Alliance, which show:

•    51 percent of care recipients live in their own home, 29 percent live with their family caregiver, and 4 percent live in nursing homes and assisted living.
•    40 to 70 percent of family caregivers have clinically significant symptoms of depression. Approximately a quarter to half of these caregivers meet the diagnostic criteria for major depression.
•    More women than men are caregivers: An estimated 66 percent of caregivers are female, 34 percent take care of two or more people, and the average age of a female caregiver is 48-years-old.
•    73 percent of family caregivers who care for someone over the age of 18 either work or have worked while providing care. 66 percent have had to make some adjustments to their work life, from reporting late to work to giving up work entirely. 1 in 5 family caregivers have had to take a leave of absence.
•    The value of the services family caregivers provide for "free" when caring for older adults is estimated to be $375 billion a year. That is almost twice the amount that is actually spent on home care and nursing home services, which is estimated to be a combined $158 billion.
•    Women who are family caregivers are 2.5 times more likely than non-caregivers to live in poverty and five times more likely to receive Supplemental Security Income.
•    47 percent of working caregivers indicate an increase in caregiving expenses has caused them to use up all or most of their savings.
http://www.thetakeaway.org/series/caregivers/


As someone who has been through the experience of caring for a loved one with a slowly debilitating illness that required long-term part and subsequent full-time care, I would like to offer this advice to future family caregivers.

1.    Start thinking about the possibility that you may end up having to care for an aging parent or other relative, now.  Once they are in need of care, it is too late.  While you may be in your 20s now and your parents in their 40s and in great health, it is tempting to think that discussions about long-term care can wait.  They can’t.  It is important that your loved one's wishes be made clear and the more that they can put in writing the better.

a.    Most of the most important financial and legal decisions involving long-term care need to be made long before care is required. If you should find yourself in a position of caring for a person with dementia or who is otherwise unable to speak for themselves, you must make sure that all legal documentation was drafted at a time where there is no question that they were competent.  This is for their protection as well as yours.

ARAG®, a global provider of legal solutions provides this list of questions to use a guide to discussing long-term care plans with your parents:  

1.    What is your parent's financial situation? "This includes knowing where checking and savings accounts are held, as well as if any financial planning has been done to deal with a long-term care situation," says Healy.
2.    Does your parent have a Durable Power of Attorney? This document gives someone else decision-making power if the parent becomes incapacitated. Everyone needs to know who can write checks for your parent and who is responsible for paying bills and manage finances when it's needed.
3.    Does your parent have a Healthcare Power of Attorney? Who will make medical decisions if the parent is unable to do so?  Does that person know that he or she is responsible and the preferences of the parent?
4.    Does your parent have a Living Will? Different from a Healthcare Power of Attorney, this document spells out a person's wishes about medical and life-sustaining procedures. Who has been named? Does he or she know the parent's wishes?
5.    Is there a plan in case the parent becomes incapacitated? Does the parent have preferences on where he or she will go?  Has any financial planning been done to manage this possibility?
6.    Is there a Will? While this can be one of the toughest questions a person asks a parent, simply knowing where it is located and who is responsible for managing the estate can save everyone some stress.

Read more here: http://www.heraldonline.com/2013/07/30/5067273/arag-offers-six-questions-to-ask.html#storylink=cpy

b.     Life, health and long-term care insurance are much less expensive to purchase when you’re young and in good health.  Once you’re past 50-65, the cost of insurance increases significantly. 

2.    Talk to other family caregivers and get a full understanding of what caregiving entails. There are a number of groups that you can join online as well as in person, which will allow you to gain insights into the day-to-day routines and experiences of other caregivers. Joining a group with other caregivers will give you an opportunity to listen and ask questions in a supportive and non-judgmental atmosphere.  It also gives you an opportunity to talk to others who have no vested interest in the care of your loved. Be aware that many health care professionals and “caregiving counseling agencies have a bias toward in-home versus nursing home care.  “

In his analysis of the recent study conducted by The Pew Research Center, Drew DeSilver discusses the evolving role of family caregivers. He writes:

  “Caregiving encompasses everything from buying someone groceries and managing their finances to helping them with bathing, dressing and other tasks of daily life. But a 2012 survey by the AARP Public Policy Institute and the United Hospital Fund found that in recent years, the role of family caregivers “has dramatically expanded to include performing medical/nursing tasks of the kind and complexity once only provided in hospitals.” In fact, nearly half (46%) of family caregivers reported performing such medical/nursing tasks, three-quarters of those said their tasks included giving injections, administering intravenous fluids or otherwise managing medications”

You might be surprised to know that most in-home health aides are not allowed to perform the most basic tasks like applying anti-rash cream, changing a bandage or administering nasal spray.  If your loved one needs these things, you as the family caregiver must do the things.

3.    Dispel the idea that you are being selfish for thinking of protecting yourself.  We have all heard the horror stories about people who take advantage of the elderly and mentally infirmed. They are enough to make your blood boil. However, for every one of those stories there are thousands of people who every day are doing their very best to care for their loved ones.  Protecting your health as well as your legal and financial interests is simply good sense.  I know that my mother never wanted me to end up homeless or penniless and neither would your loved one.

4.    Learn to put your emotions on hold. As a family caregiver you will have to make some of the hardest decisions that you will probably ever make.  You are your loved ones advocate, the best and,  sometimes the only one they have.  You have to be able to communicate clearly and decisively on their behalf as well as your own.   Displays of emotion will make you appear weak and vulnerable in the eyes of health care professionals, lawyers and other people.  Don’t expect sympathy for your situation.  There are predatory loan and scam artists that are just waiting to take advantage of your situation.  Don't be a victim.

5.    Seek Counsel from professionals: Estate Planners, Financial Consultants, Tax Advisors,  Real Estate Agents and Caregiver Support Counselors.  Get references and check their credentials before paying retainer fees.  Don't allow one lawyer to handle everything.  You need a lawyer to represent your loved one and one to represent you. Allow both lawyers to review all documents.

6.    Realistically assess your support network.  Ask for help from friends and family but don’t count on it and don’t get your feelings hurt when people are busy.  Remember that everyone’s life is just as busy as it was before you took on the role of caregiver.   Make sure that there are people in your support network who care about you and not just your loved one.  So much of your time, attention and energy will be focused on your loved one that it will be easy to become a mere shadow on the stage of your own life.  You will need a people who will just pick up the phone and inquire about your health and well being.   That is not being selfish.  Being a caregiver can be very isolating and very lonely especially if you are caring for a person with dementia.

7.     Understand that ultimately the buck stops with you. Develop a long-term care plan that works best for your loved one and yourself and stick to it. The opinions of others who are not actively involved in the day-to-day care of your loved one do not count.  No matter what you decide or do you will never please everyone.  In my case, I should have followed through with getting my job transfer and moving in 2005.  My mother would have soon realized that she could not live on her own and would have moved to live with me.  I would have worried about Mom living on her own for awhile.  However by following through with what I knew was the right course of action,  I would have been a much happier and less stressed caregiver which would have been better for both of us.