Planning Care for Aging Parents
Reasonable thoughts from a Geriatric Nurse Care Manager & Daughter
By: Hildy Sheinbaum, RN Director of Senior Placement Services, Sterling Care Senior Living Choices LLC
A majority of the calls I have received over the past ten years are from individuals who are in a crisis and have an immediate need for help, either for themselves, a spouse, a parent, or for a loved one who is “alone.” The situations are all varied. For example, a parent undergoing major surgery has a stroke post-operatively, and can’t go home; One parent dies suddenly and the other can’t care for himself; A spouse is diagnosed with stage IV lung cancer and his wife has dementia and needs to be moved immediately; A friend without any significant others can no longer take care of herself. As different as the circumstances are, the sentiment expressed is one in the same— panic and an overwhelming feeling of paralysis.
My first bit of advice is always to “take a deep breath” in order to clear the mind of disjointed thoughts and of the jumble of options floating in space. And then I ask a whole lot of questions in order to begin to piece together a solid plan. Quite honestly, I often think to myself, “If only a plan had been in place for this family….” Many of us take the time to develop financial plans….be it a budget or a retirement plan. We hire accountants to help with our taxes. Others take time to consult attorneys for our businesses or personal affairs, or to ensure that we are “covered” so that we don’t find ourselves in a precarious legal situation. Unfortunately, too few of us take the time to fully plan for aging and/or sickness. I can’t help but wonder why that is…. Is it because the inevitable is too difficult to face? Or does it simply take too much effort to coordinate a plan for our often-stubborn aging parents…. And ourselves?
There is one prevailing indisputable principle, no matter how difficult it is to accept: we do not live forever. And if you can keep this principle in the back of your mind as a reality check, care planning will be made that much easier. The truth is, it is never too early to begin to think about how you want to live in the future. While no one can explore a “what if” for every possible scenario, a good solid plan will cover a multitude of bases. I am always reminded of my own experience as my 12-year old self, waking up to my 38-year-old mother’s screams…. that my 40-year-old father was in bed and not breathing. Young. Healthy. Sudden. A recent bout with the Hong Kong Flu. Disbelief. Ill-prepared. Life-changing.
What follows, will provide guidelines to help you plan, plan and plan. If it’s too late for you to plan effectively for the future because you’re already in the middle of the storm, it is my hope that you will use the information to make it a bit easier to get into the clearing.
A Step-by-Step Guide to Care Planning:
1. Set realistic goals
Keep in mind that the purpose of care planning is to optimize and maintain health and function in order to maximize the quality of life. Care planning allows for thoughtful decision-making regarding health care while preserving financial security. That said, my Russian grandmother, with all the wisdom in the world, expressed it best, “Man plans, and God laughs.” We set ourselves in a direction and on a course, but due to circumstances completely out of our control, we can easily get turned around and have to start all over again. So, be sure to re-visit those plans and goals, keep an open mind, and modify as circumstances change over the course of years.
2. Explore your/your loved one’s wishes and desires:
This requires deep thought and reflection. How would I want to live my life if…
Who would I choose to assist me in executing those wishes if something were to happen and I were unable to make decisions for myself? It can often be a painful realization that perhaps your spouse might not be the best person to carry out your wishes, but rather your child or your brother, who are medical professionals, might be the better choice given their knowledge base and ability to separate emotions from medical evidence. I once had a client call me to discuss her feelings surrounding her wish to have her daughter become her “person” to make medical decisions on her behalf. She felt her daughter understood her feelings in a deeper way and would be better equipped to carry out her wishes in the end. Lots of emotion, but ultimately, after sitting down with her husband to explain her reasoning, she made the right choice for her peace of mind and her husband completely understood.
3. Gather necessary documents to ensure that those wishes and desires can be executed:
A. Power of Attorney (POA): A POA is a legal document which assigns one person the power to act on behalf of another when circumstances deem it necessary to do so. There are a variety of POA options that one needs to understand. The assigned “agent” can have either broad legal authority or limited authority to make decisions about finances or medical care. You can assign one individual to take care of your financial and/or legal matters, and yet another to take care of your health care matters, or one to take care of both. A power of attorney typically remains in effect until the person who initiated the POA becomes incapacitated. A specialized power of attorney for healthcare issues is also known as a “Health Care Proxy” (see below). While power of attorney templates can be downloaded from the internet, it is advisable to work with an attorney on this very important document as requirements and laws differ from state to state, and issues can be complicated.
In the case of elderly parents, be sure to consider the state of mind of both if you are planning to have your mother be your father’s POA, or vice versa. Its prudent to have an alternative listed so should one or the other become incapacitated and unable to make sound decisions, someone else can step in (that is usually a child).
B. Health Care Proxy: A Health Care Proxy is the individual you select to make medical decisions for you. A health care proxy is valid indefinitely, so it is important to either have an alternate or keep it up to date over the years. You do not need an attorney to assign someone to be your health care proxy. There are forms online that can be downloaded, printed, completed, and kept in a safe area in your home, with a copy given to the individual you have designated as your proxy. Social workers, hospitals and at times physician offices may be of assistance in helping you to complete the necessary paperwork to execute a Health Care Proxy. If you are your parent(s) health care proxy, remember to bring a copy along with you if/when they are hospitalized so that hospital staff know to call upon you should a decision need to be made.
C. Advance Directives: An advance directive is a legal document that allows you to express your wishes for your care and medical intervention should you become unable to do so at a point in time. A Living Will provides very specific instruction regarding how you wish to be treated in a given circumstance. Do you wish resuscitation if your heart stops? Do you want to be assisted by a breathing tube and placed on a ventilator if you have difficulty breathing? Some of you may have given thought to this in the face COVID-19 complications; in this case, if you are young and healthy without any previous history or illness, it is likely that you would choose use of a ventilator as a life-saving measure. On the other hand, if you are at the end of your life and have multiple medical problems, you might not choose to have a ventilator used to prolong life should respiratory failure occur. If you have a parent who is 95 with multiple medical problems and in a nursing home, there are so many things to consider in how a medical crisis should be handled. If this situation is relevant to you, then I’m quite sure you have been asked, “does your parent want to be resuscitated?”
Folks may be dumbfounded when the DNR (Do Not Resuscitate) issue comes up. What is often unsaid but perhaps most important, is that there are choices. A person doesn’t unequivocally have to proclaim that he/she is a “DNR’ just because he/she is “old” with medical problems. There are qualifications— for example “do not resuscitate” can be supported with “if there is brain damage and I have no chance of waking up,” or “do not resuscitate if I have no chance of returning to the level of functioning I had at a particular time” or “do not resuscitate if I have metastatic cancer to my major organs.” While professionals may neglect to explain this at the time, it is important to advocate for yourself or a loved one to make sure that a statement of “DNR” is qualified if relevant.
I am often asked about feeding tubes for elderly parents. There are a number of situations where an aging individual cannot recover from an illness, or where life cannot be sustained, unless enteral nutrition is initiated. In such cases, physicians may present an option to have a feeding tube inserted directly into the stomach (gastrostomy tube) in order to provide a person with the necessary nutrients when normal eating is compromised. The decision to begin enteral feedings can be a difficult one; it is an invasive procedure that may prolong life, but not necessarily add to the quality of it. This is a topic that is best served with a candid discussion in early years, and it is a good idea to include one’s desires into Advance Directives.
Advance Directive forms can be downloaded from a variety of sources on the internet. AARP offers templates by State and can be downloaded on their website: www.aarp.org. Five Wishes is an easy-to-use advance directive template available online (www.fivewishes.org) that allows individuals to specify how they wish to be cared for at the end of life. It is thought provoking and can be a great help in guiding difficult decisions about aging and end of life.
It is also important to mention that States have different nuances for carrying out DNR orders when a person is in the home or in a community setting and there has been a decision for a Do Not Resuscitate order. So, for example, Connecticut requires that individuals wear an orange bracelet identifying themselves as a DNR, and that a physician signed “Transfer of Do Not Resuscitate Order” form be retained in the setting. In New York, a Medical Order for Life Sustaining Treatment (MOLST) must be completed by a physician and retained in the home. Be sure to check your State’s requirements for carrying out DNR orders as they do differ from State to State.
4. Perform a comprehensive and objective assessment on your/your loved one’s health and finances
Utilize the resources of physicians and their staff to assist in gaining an understanding of health status, or a new diagnosis. Don’t for one minute forget that Health Care is a business (unfortunately!); shop around in order to get second and even third opinions and ask questions when things are unclear. There are specialists and sub-specialists for almost every diagnosis. It is important to seek out those practitioners who have a broad base of knowledge relative to the illness/condition of concern. Usually your internist can be helpful in referring but do utilize the internet in getting insight into resources. In the case of Memory Impairment, a local chapter of the Alzheimer’s Association can be helpful for getting recommendations for specialists and care. Be mindful that Alzheimer’s Associations do differ from State to State, and their resources may differ accordingly. Gaining a clear and thorough understanding of an illness will assist in planning for the future; as I mentioned before, however, do keep in mind that unpredictable events do come up.
Geriatric Care Managers can be hired to assist in objectively evaluating a situation and developing a plan. Care managers with backgrounds in nursing (like myself) are often helpful to families in increasing their understanding of medical conditions, situations, and options. They can provide insight into developing a plan of action, in addition to serving as a non-biased and educated advocate. Care managers with backgrounds in social work typically focus on advocacy, and coordination of services.
I recommend consulting with an eldercare attorney if there is a complicated family or financial situation. Elder attorneys have a wealth of knowledge regarding assets, disbursements, State tax codes and wills and estates, and can assist with understanding the best path to take in order to maximize finances and ensure that everything is being done in a pragmatic and legal way.
5. Evaluate whether Long-Term Care Insurance makes sense for your situation.
Long Term Care Insurance is designed to cover the cost of care either in the home or in a facility/community when a person can no longer care for him/herself. It typically covers costs that health insurance does not. Be sure to seek assistance from individuals who specialize in Long Term Care policies who can present and explain in detail the various options and relate those to your personal financial situation. Read policies thoroughly, and shop around if you think this is something that you want to pursue. Long term care policy premiums are often expensive (especially if purchased after age 65) and may have restrictions that dictate what type of care can be used, so again, read carefully and ask many questions.
6. Gain a Thorough Understanding of Community Resources
Many communities provide a host of services that can be very helpful to individuals who are ill or elderly. Some towns sponsor senior centers that offer wellness screenings, lectures, and activities during the day and even a hot meal. Subsidized transportation services may be available to transport a disabled or elderly person to local appointments, and even deliver food. I strongly suggest that a call be made to your local town hall or city center to understand what services are available locally.
Additionally, get to know the assisted living communities in your area if consideration is being given to community living for you or a parent at any time in the future. Communities offer tours, and a meet and greet of key staff. It’s a wonderful way to get a glimpse of what it’s all about. Please keep last month’s blog on hand for reference in order to make a distinction between the types of care settings available to the aging population.
Until next time…. Stay Well!
Hildy
Be sure to read the first article in our geriatric guide here.
