The Following remarks were given by JFS Director of Clinical Services, Rachel Lazarus Eriksen, LCSW-BACS; at the Hadassah and NCJW Spring Study Group “If Only I’d Had A Plan… The Facts of Life and Death” Tips and Tools for Our Families and Ourselves on Tuesday, April 30th, 2019.
Thank you for being here today. This is a topic near and dear to my heart, personally and professionally. I have been a social worker for 12 years and have worked with seniors and their families both as a hospital discharge planner and for the past 8 years at JFS in many different capacities, including a senior care planner. In that capacity, I help individuals and families explore and navigate options during the aging process as needs change. This can include Medical, Mental Health, Memory, Legal, Financial, Support System, and Housing. I know this is a very challenging topic, so please listen, ask questions and feel free to reach out at any time.
The majority of families that we work with for senior care planning are in crisis. An individual has had a medical event and the family reaches out wanting to know the options. For those
of you who have not been through this (either yourselves or a loved one), essentially you are told by a doctor that it is no longer safe to live at home, and you have 48hrs to come up with a plan. 48hrs is the generous version. Another call we receive a lot is from an adult child who comes to visit from out of state and had no idea “how bad things had gotten” with their parent. A lot can be masked over the phone. Yet another scenario we hear a lot is from a burnt out caregiver who has taken on more than they can handle and doesn’t know where to turn.
So the family member reaches out, comes to meet with us, and we begin the process. At this point for many, the patient is no longer in a position to state what their preferences of care are, designate a power of attorney or even participate in the process. Difficult decisions are made by loved ones, usually adult children, trying to agree on what the patient would want and what works for them, the adult child, and what they can afford. And if you can imagine, sometimes the adult children don’t agree! It can all get very complicated, to say the least. If only they had had the difficult conversation before things got to this point, it would be infinitely easier.
In his bestselling book Being Mortal (which if you haven’t read, you need to), Dr. Atul Gawande (Gawanday) says, “Hope is Not a Plan.” He goes on to say:
“Our concerns and desires may shift. But whatever happens, we want to retain the freedom to shape our lives in ways consistent with our character and loyalties. The battle of being mortal is the battle to maintain the integrity of one’s life—to avoid becoming so diminished or dissipated or subjugated that who you are becomes disconnected from who you were or who you want to be.”
What I think he’s saying is that everyone wants to age with dignity, our challenge is to work together to allow that to occur.
Approximately 47 million seniors live in the United States. The senior population will soon double, according to the Population Reference Bureau.
According to the National Center for Health Statistics, the average American life expectancy is 78 years.
The CDC reported in 2016 that in a given year about 25 percent of Americans age 65 and over fall down, and that falling is the leading cause of senior injury and death.
The prevalence of depression increases with age. In 2008, the proportion of people age 65 and over with clinically relevant symptoms were higher for those 85 and over than for people in any of the younger groups, according to the Institute on Aging.
The good news is that we are living longer but with that comes the need for planning and appropriate care.
In Being Mortal, Gawande said, “People with serious illness have priorities besides simply prolonging their lives. Surveys find that their top concerns include avoiding suffering, strengthening relationships with family and friends, being mentally aware, not being a burden on others, and achieving a sense that their life is complete.”
Whether you are the patient or the caregiver, don’t wait for a crisis to start the conversation about how to help someone age with dignity. It is infinitely easier to make decisions and plan ahead of time when emotions aren’t heightened and there is not a rigid timeline.
When you sit down to plan ahead of time you can make decisions based on what the patient actually wants and needs as opposed to rushing into a quick fix. Important caregiving decisions that are made in a crisis situation are stressful and may not provide optimal results because arrangements often have to be made hastily with limited resources.
I know I’ve repeated this a few times, but if there is anything you take away from today, it’s Don’t wait for a crisis! Making a plan with a senior starts with a conversation….who do you want to make your decisions if you’re not able to, what are your goals as you age, when will you know that you need help, who is your support team, how will you afford it. While this might seem overwhelming and daunting, these are all important points to discuss with our loved ones while they are capable.
We often hear from families, “I promised her I’d never send her to a nursing home! Or why hire someone to do things that I can do for my parent.”
As a caregiver, adult child, or friend- Don’t make promises you can’t keep.
There is a massive emotional, social and financial impact of aging in place vs. moving to a facility, both for the patient and their family, there is a lot to consider. Many see moving to a nursing home as the last resort, but I have seen many seniors flourish moving to a facility and relinquish the stress of living independently in the community and depending on loved ones.
Personally, I watched my parents agonize over how to talk to my grandparents about moving to a nursing home 7 years ago and then saw how my grandparent not only quickly adapted but thrived in the new environment. My grandfather’s quality of life in particular, was significantly improved once he was not isolated in an apartment with my grandmother who had Alzheimer’s and I attribute his living to 100 to this move, well that and his motto that, “if it tastes good, you should probably spit it out.” At the end, he mostly survived on chocolate ice cream.
In addition, there are many benefits of hiring in-home care: such as companionship, transportation, supporting independence, peace of mind, and accountability. I think we often feel the need to take on the caregiver role ourselves, and that is not necessarily the case. There are options! Especially when you plan ahead.
One of the things that falls into planning is sometimes called Five wishes or advanced directives. This includes:
- Who I want to make my decisions
- This is the Financial and healthcare POA, two separate documents, one controls your assets and the other makes your medical decisions. They do not have to be the same person and make sure the people you do designate know your wishes
- What kind of treatment I do or don’t want also called Living Will
- What kind of comfort I want at the end (where, who, what kind of care)
- How I want to be treated
- What I want for my loved ones and health care team to know
If you do not have these documents on file, ask your doctor or go to the JFS website.
Louisiana also has a LAPOST (Physician Orders for Scope of Treatment)- this goes even further and into more detail than just the living will about what types of treatment you do or don’t want, should the need arise.
A recent study published in Health Affairs found that only one in three Americans has documented advanced directives. In response to that statistic an article published by NPR said “In some ways, the public’s lack of excitement about this is related to the reality that it’s very hard to make decisions about the kind of care you want in the future when you don’t know what that will be like,” she says. While this is true, avoidance is not the answer.
Just to give me an idea, how many people here are caregivers. Statistically speaking, most of us in this room will be a caregiver to some capacity at some point in our lifetime. (not to mention a patient)
There are 4 identified types of caregivers- the long-distance caregiver, the sandwich generation caregiver, the spousal caregiver, the working caregiver, all bringing different levels of stress
The Institute on Aging found that as of 2011, some 43.5 million adult family caregivers were taking care of someone 50 years of age or older. As more people live long enough to experience multiple health issues and dependency, more relatives will be facing this responsibility.
Sixty-five percent of older adults with long-term care needs rely exclusively on family and friends to provide assistance.
And 84 percent of women with parents who needed care did not plan for it. Plans were only put in place after a need for care became obvious.
To reiterate, don’t wait for the crisis to occur to start planning.
We are often asked by families; how will I know when it’s time to intervene with a loved one.
Here are some things to look for:
Difficulty keeping track of time, poor diet/weight loss, loss of interest in hobbies/activities, changes in mood, difficulty walking or with balance, unexplained bruises, forgetfulness, missing appointments, poor judgment, poor hygiene, neglecting household duties
There are lots of options in terms of care and various levels and payor sources. Before blindly rushing into to caregiving, be sure to identify your own needs and limitations as well as those of the patient.
If you do become a caregiver, it’s important to develop a strategy and self-care plan to make sure your needs are met. Some things to consider:
Do you have children that have needs? Do you have a partner; how will caregiving affect my relationship? When do I draw the line and say “I can do this much and no more”? Will I maintain my own health?
Taking on more than you can handle out of guilt or obligation is not good for your wellbeing or your loved ones.
There is a 63% increase in the mortality rate for people who suffer from caregiving-related stress according to Research by Ohio State University.
Self-Care as a caregiver is so important, learn to accept help, Be Kind to Yourself, Know Yourself, there is no perfect caregiver, get connected with resources, join a support group, keep a Positive Attitude, Don’t forget your friends, Be Proactive
Many families come to us for help with having the difficult conversation with a loved one. We are always happy to consult or meet with families to help guide the conversation.
Here are some tips on gently convincing a Loved One to Accept Help: Ask what they need help with, show respect, let them contribute, don’t do it for them
When Dealing with Taboo Topics (like driving)
Don’t give advice unless it’s asked for, pick your battles, listen to what they’re saying, accept differing viewpoints, speak calmly and clearly, Don’t patronize, choose your setting carefully, Put yourself in their shoes
Caregivers often agonize over whether to accompany a loved one to the doctor. A recently published study from John Hopkins Bloomberg School of Public Health says research indicates that elders who were escorted to the doctor by someone else tended to be more satisfied with the overall care they received and were more likely to remember important information after the visit. There are a host of benefits to having an extra set of eyes and ears at the doctor’s office, particularly if a loved one is struggling with conditions such as hearing loss, or dementia. This same study found that doctor visits involving a companion generally lasted 20% (about five minutes) longer.
If you can’t attend, don’t be afraid of communicating with your loved ones’ doctor, you can call ahead of time or write a letter.
I told you earlier about our Senior Care Planning, in addition JFS offers Counseling, Homemaker- someone to come into your home and help you cook, clean and run errands, Lifeline, personal emergency response which triggers a loved one first before automatically sending in EMS and sending you to the hospital, CAC, cab vouchers, and Bikur Chaverim- where a volunteer visit monthly with a homebound client. Further, we have information and referral services, helping you find the resource that you’re looking for even if we can’t provide it.
In Tuesday’s with Morrie, Mitch Album says, “As you grow, you learn more. Aging is not just decay…it’s growth. It’s more than the negative that you’re going to die, it’s also the positive that you understand that you’re going to die and that you live a better life because of it.”
In closing, don’t wait for a crisis to begin the conversation, start now! A popular Chinese proverb says the best time to plant a tree was twenty years ago, the second best time is now.