Alzheimer's disease is the only top-10 cause of death without any way to prevent, cure or even slow its progression. In 2012, the first Baby Boomers turned 65. Out of this population, currently estimated to number close to 76 million, it is projected that 10 million will develop Alzheimer's.1
The goals of this article are two-fold: to bring about a greater understanding of key estate planning and legal issues for families, as they relate to cognitive decline and memory loss in their loved ones; and to raise awareness of the practical and emotional challenges that lie ahead for caregivers.
Alzheimer's is just one type of dementia, which is defined as a group of symptoms affecting intellectual and social abilities severely enough to interfere with daily functioning. Thus, the information imparted in this article applies with equal relevancy across the cognitive decline and memory loss continuum.
A Personal Story
My approach to this discussion does not fully derive from a legal estate planning background. Rather, it is my own journey of caregiving and loss that gives shape and meaning to the information and guidance provided here.
In January 2008, my wife Nancy was diagnosed with early-onset, multi-infarct dementia. She had just turned 65. I was her at-home caregiver until July 2010, when the progression of her illness necessitated that I place her in a memory care residence. I continued my very active involvement in Nancy's care over the next two years, up until the moment of her death on July 4, 2012.
Over the entire term of Nancy's illness, I maintained a full-time professional family law and mediation practice. At the same time, I immersed myself in the process of learning and understanding her illness, and how best to manage her care - whether provided by myself or by professional care providers.
Along the way I ensured that all necessary legal and estate planning preparations were accomplished, through both my own limited background in these areas and by reaching out to professionals who could provide me proper assistance.
Here is a little of what I learned along the way.
Early Estate Planning Musts
Common estate planning documents should include a last will and testament, durable power of attorney and healthcare directive. If a family member has dementia, these documents become absolutely critical, with one notable enhancement: the durable power of attorney should include authority over healthcare and financial matters. If these documents have previously been prepared, now is the time to review and update them as needed.
There is simply no way of knowing when the point will be reached where competency becomes a concern. Individuals with dementia for whom the documents are drafted must be able to clearly articulate their wishes during the drafting process and fully understand what they are agreeing to, so time is certainly of the essence where these matters are concerned.
Several years before Nancy's diagnosis, we had an estate planning attorney prepare all of the above documents. By 2009, it became apparent my wife had a very progressive illness. I realized our estate planning needed to undergo a rigorous review. Nancy and I discussed our individual and mutual needs. By the summer of that year, all documents were updated in line with our wishes.
A further word about two important instruments:
Durable Financial and Health Care Power of Attorney (DPOA): The DPOA proved to be an absolute golden key to my making ongoing decisions around Nancy's care. It was crafted in such a manner as to be fully operative immediately upon execution, without the need for any independent verification of incompetence. Without this valuable document, it is very likely that a guardianship action would have been required for me to effectively make health and financial decisions - at great personal and emotional cost to Nancy and me.
With the DPOA, I was able to manage Nancy's care seamlessly and make a wide range of decisions that impacted both of us, such as: filing long-term-care insurance claims; obtaining a disabled-parking permit; arranging for professional caregiving; addressing innumerable medical decisions (which included several emergency room visits); allowing gero-psychiatric evaluations at two different hospitals; placing Nancy in a memory care, assisted-living residence; and, finally, arranging for hospice care.
Physicians Orders for Life-Sustaining Treatment (POLST): "The goal of the (POLST) program is to effectively communicate the wishes of seriously ill patients to have or to limit life-sustaining medical treatment as they move from one care setting to another."2 The POLST is intended to complement the health care directive and people should have both. The POLST, however, is prepared and signed by a healthcare provider, and is based on end-of-life conversations.
When a loved one with dementia is living at home, it is important that a POLST be prepared and situated in plain view so that it is readily available to emergency medical personnel who have occasion to come to the residence.
Nancy's transition from living at home to residing in a memory care setting included a three-week, in-patient, gero-psych hospital evaluation. A requirement of her discharge was the preparation of a POLST by her treating psychiatrist. On her arrival at her new home, the POLST was posted in her room.
Further Financial Planning
The road is long and complicated when delving into a discussion on how to plan financially for the care of a loved one with cognitive impairment. It is too broad and important a topic to be adequately treated here.
An excellent resource for both the legal and financial elements of care planning is the Alzheimer's and Dementia Caregiving Center on the Alzheimer's Association website: http://www.alz.org/care/alzheimers-dementia-financial-legal-planning.asp.
The Emotional Challenges of Caregiving
It is very easy for caregivers to lose focus of their own needs in the midst of the busyness - and occasional chaos - surrounding the care of a loved one with cognitive impairment and memory loss. Things are constantly in motion. Nothing is ever static.
Just when you reach an "Ah hah! I've got a handle on this now!" moment, the disease does its thing and, just like that, any semblance of control and order disappears. However, one can't be all-in as a caregiver if at risk for caregiver burnout. "Being a caregiver while also taking care of yourself can be a difficult balancing act."3
A significant challenge a caregiver faces is how, and when, to share with others the difficult news of a loved one's dementia. A caregiver is deserving of support, understanding, love and care, not just from family, but also from friends and neighbors. It is possible - in fact quite likely - that non-family members have noticed changes in the loved one. They very much want to provide support, but really have no idea how to reach out. In truth, they need permission.
A caregiver's journey may thus become a lonely and isolated experience without some degree of transparency with family and friends with respect to what is going on. Understandably, there may be embarrassment and uncertainty around what to do. The caregiver may even feel that it is an unbearable stigma to reveal that dementia has entered their family's life.
I really began to understand the dynamics of caregiving when I decided to join a professionally facilitated support group in the fall of 2008. I was nervous, believe me. This anxiety, however, gave way to relief, as I found myself surrounded by others who were, in essence, my peers in caregiving. I could ask questions, share my difficult moments, learn invaluable tools, shed tears and receive true empathy.
Early on, I learned the importance of reaching out for support from family and friends. To this day, I am discovering how many people knew or had a sense of what was happening with Nancy. They desperately wanted to reach out to me, yet could not until I opened up to them.
The Alzheimer's and Dementia Caregiver Center has an excellent "Get Support" link with a treasure trove of information on caregiver assistance, including links to support groups and services.
It is my fervent hope that this article has shed some light and understanding on the legal, practical and emotional challenges associated with dementia care planning. Most certainly, my journey over the last five years has been infused with sadness, despair, grief and loss. Paradoxically, this same journey has also been filled with discovery, hope, growth and transition. It has been all the more enriched by the loving and tireless caregivers I have come to know and respect.
Don Desonier is a collaborative family law attorney, divorce legal coach, FasTrack Divorce™ attorney, and family mediator. He can be found at: http://www.desoniermediation.com. Desonier publishes articles on dementia caregiving at: http://www.transitionsindementiacare.com.
1 "Generation Alzheimer's: The defining disease of the baby boomers," Alzheimer's Association, 2011.
2 Washington State Hospital Association, "End of Life Care Manual," section 6.
3 Pauline Boss, Ph.D., Loving Someone Who Has Dementia (Jossey-Bass, 2011).