2020 was a year when we had more in common with our fellow human beings than usual. I could start ticking off the list—but you likely have the same top ten issues on the tip of your tongue. 

With powerful synchronicity, the personal issues I survived in 2020 have informed my professional life as an elder law attorney. Today was the first time I returned to writing a blog entry. I was surprised by the draft entry I started in February 2020 that reads as follows:  

"It will be one month tomorrow that my 93-year-old father-in-law, John has been living with me and my husband. Every time something extraordinary happens, I think, "I should blog about all the important things I am learning because it might be helpful to my clients." And if I hadn't been almost brain-dead from lack of sleep, I would have started this blog on day two. Now that I'm at day 28, it feels even more important for me to share my experience in hopes that others will benefit. So the good news is that at day 28, I am finally getting sleep and catching up on the lost sleep from the past several weeks. The foggy brain, dull headache and searching for a boost from food and beverage reminds me of when we had infants in the house. In fact, much about this experience--being a caregiver for an older adult--is similar to parenting. There are just twists that keep" [end of draft February 2019]

I am returning to this topic today because (a) I hope it is useful information for others, and (b) it shares a bit of my story for potential clients. I call it my top five lessons of 2020 that helped me survive (at least until today). 

1.  In-Home Caregiving for an Older Relative. Making the decision to live with an older adult who needs care is a process that needs to be considered carefully, prayerfully and repeatedly.  I could fill an entire book with all of the important things to consider when making this decision, but for this blog entry, I have narrowed the list to a few topics. 

• SPACE.  Is there enough and are there barriers that need removing? For twenty years, I've been living in the same 1300-square-foot ranch. Living in a smaller space with an older adult has many of the same advantages as parenting children and teenagers. You can hear what's going on without being physically present, you only have room for what's absolutely necessary, and you can get to someone who needs help quickly.
  
  We converted a screened porch into John's suite. It has room for his full bed, night stand, lift chair, armoire, china cabinet that serves as his office/desk, kitchen table 4 chairs, large screen TV, stereo with speakers, and bedside potty chair. The other major modification was to renovate our master bathroom to remove the tub and install an overly large walk-in shower and widen the doorway. 
   
• PROFESSIONAL HELP
  • Companion Care.  John is fortunate to have a long-term care insurance policy that pays for "companion care" in our home while my husband and I work outside the house. I have lots of advice about choosing, hiring and maintaining good caregivers.
    
    Because John's age makes him high risk, having outsiders come into our home to provide care was not an easy decision during the 2020 pandemic. For much of March, we provided 100% of care. We learned the risks to our own health were greater than the risk of exposure from a limited number of professionals coming into our home.
    
    I recommend choosing a "Home Health Care Company" who employs caregivers because the company assumes much of the risk you do not want to add to your plate, such as screening the employees for drugs and criminal history, training care providers with the knowledge, skill and experience necessary to do the job, providing insurance coverage for employees for worker's compensation in case there is an accident in your home, and providing replacements when caregivers call in sick.
    
    In my community, it is a buyer's market for hiring professional care. Therefore, good companies are highly motivated to provide all necessary services to meet the older adult's individualized care plan. If a company cannot meet your family's needs, look for another company that will. 
     
  • Aging Life Care Experts. I often recommend that my clients pay for professional assistance from members of the Aging Life Care Association.
    
    On their website, www.aginglifecare.org, you can search for an aging life care expert in your area. I've seen and heard of too many situations that went south when families reached out to the "free" agencies and "experts" from the 1-800 numbers on television who offer services. Aging life care experts have specialized education, training and experience that can help you assess all of the important issues that need to be considered as you decide, among other things, whether you can successfully provide care in your home. We made the decision for John to live with us before the pandemic hit, so it was not a factor when we decided, but it is a factor now in our on-going evaluation about whether we can continue to be successful providing in-home care. Periodically assessing your situation, identifying both strengths and challenges will help you support your efforts and provide a reality check before reaching a crisis situation when people often lose their ability to be objective.
    
    Aging life care professionals can help with this assessment as well as provide on-going practical advice about how you can achieve your goals. In my opinion, the cost is an important investment in your success.
      
  • NAELA:  Elder Law Attorneys. An elder law attorney can help with the legal documents an older person typically needs, Powers of Attorney (healthcare and financial), Wills/Trusts, and Advance Directives, but they can also assist in identifying and accessing information and resources about formal and informal care and how to pay for it.
    
    I always recommend choosing an attorney who is a member of the National Academy of Elder Law Attorneys (www.naela.org) because membership is an indication about the attorney's investment and commitment to elder law issues.   

2 & 3.  Out-of-Home and Long-Distance Caregiving for an Older Relative. My 93-year-old mother's health started declining sharply in February 2019. She spent time in the hospital and I was able to help convince her to take advantage of her MEDICARE benefits and allow them to pay for rehabilitation in a skilled nursing community before going back home. While she was there, the Rehab started their restrictions related to the pandemic. As agreed, my mother moved back home to live "independently" for about one month. Because her needs were not being met, on April 24th, my sister asked my mother if she was ready to die. When she said no, my sister invited my mother (again) to move into her home where her needs could be met. My mother agreed. 

• LONG-DISTANCE CAREGIVING.  The drive to my sister's house is about three hours. When I was younger, a three hour drive was not the burden that it was at this point in my life. While my sister experienced the bulk of the burden for the in-home care, I too came to appreciate the burden long-tern caregivers experience. Some suggestions.
   
  • When you are not on the "front-line" you experience strong feelings of responsibility, guilt, and even jealously and shame. These emotions can be triggers for childhood TRAUMA experiences. Especially when you are dealing with a parent or relative, you will likely need to support yourself. Find and pay for a good therapist. (Short-term, goal oriented therapy is much more affordable than most people realize.) If you cannot afford to pay for therapy, you need to share with healthy friends on a regular basis. In my opinion, the investment in yourself is also an investment in the care of your older relative.
     
  • My sister was extremely supportive of my need and efforts to be a long-distance caregiver. She allowed me to do the things that I could easily do from a distance like, pay bills, schedule appointments, participate in telehealth sessions, and call multiple times per day to check-in. For some families, using cameras can be a big help because long-distance caregivers can see for themselves (as often as they want) their loved one and this ability to be connected helps relieve stress and dimish the guilt of being absent. 
     
  • About month three, I began to see that I needed to travel more often to my sister's house to give her a break. I identified this need long before my sister did. She was gracious and welcomed me into her home. Toward the end, the hand-off for my mother's care happened within five minutes of my arrival because my sister was so sleep deprived. These visits allowed me to step into my sister's shoes as the caregiver and do things to support her as well as give me important time with my mother. The drive to and from became a bonus rather than a burden.

4.  Hard Conversations About Death. My mantra to my sister about my mother's care was "follow her lead."

I knew my mother was in the dying process, but my mother wasn't ready to see that herself until August when she asked my sister, "I'm not getting better, am I?" My sister broke down in tears and admitted that while she was committed to support my mother's efforts to get well, she agreed with my mother, she was not getting well. They cried all day. I did too because my sister shared this with me at the time.

This experience with my mother reinforces many experiences I have had with clients starting as early 1990 when I worked as a social worker with hospice. And that is, good things happen when you have the courage and the relationship to talk openly about death with someone who is in the dying process. It only took my mother one month to decide she had had enough of life and she passed peacefully on September 12, 2020.

There were lots of ways that my sister and I followed my mother's lead toward passing, but ultimately, I believe it was her decision. This same principle applies to the passing of my brother-in-law just three weeks after my mother. While I cannot prove it, I believe we all have much more influence over our death then we realize. Allowing for these very hard conversations can be a blessing both in life, and as we grieve the loss of a loved one.  

5. Becoming the Oldest Adult--and Acting Like It.  Many of us know how hard it is to lose our parents. Others also know what it feels like to lose the entire generation and become the oldest members of the extended family. My mother was the last survivor in her family and in my father's family. Both were from large families, so I have had lots of opportunities to work through grief and to support others during my life. When I was in seminary taking Pastorial Counseling classes, I learned about the importance of supporting those in the "grief process." It is always much longer than we want to admit, and like losing someone to death, it can suck.

I liken the grief process to being in the ocean riding the waves. You know they will not stop, that you must either jump or dive through them to get to the other side, and sometimes, dammit, they blind-side you and roll you in the surf. You get up. You keep "playing" because you love to be in the ocean.

Life is like that. If we want to experience the fullness of love in living, we have to be open to experiencing the loss. On good days, I'm able to be the adult. I suggest one reason for this is that I'm not afraid to allow myself to be childlike and "cry like a baby," "throw temper tantrums" and feel the fullness of my anger while I wallow in self-pity.

2021 is coming! I have high hopes for many more brighter days than 2020. I know that I am stronger and more motivated than ever to help others survive.

Even if I know the people who have come to my office to discuss an estate plan, I always start the meat of the discussion with a question like, "Tell me about your family?" When my clients are a couple, I always take note of who starts and which family members are identified first. Clients often begin with the children. Either, "We have x number of children," or "We don't have children." 

I like to draw the family in a genogram. My clients watch me carefully as I add my symbols to the picture of their family as the story evolves. Squares for boys, circles for girls, // for divorced, ---- for not married, and an X for death. That's often the hardest symbol on the page. Not surprisingly, I have more older female clients than male clients. And while women tend to live longer than men, I don't think their shorter life span means that they have any less importance than the women in the family genogram.

On this father's day, I'm reminded of my own father, and how much influence he had on my life while he was on this earth, and for the twenty-three years since the day he passed away at the kitchen table, sitting in his favorite chair and reading the paper. I still believe he had been reading the obituaries. He, like some of my older clients, joke about reading their names in the obituary. On the May morning he died, I would not be surprised if my Dad didn't have an inner knowing that his name would soon be in print.  

In my consultations with clients, as I draw the square for men who are also fathers, I've come to expect a story. The meaning of the story is often that fathers had an important influence on the lives of the other family members--even if the father "wasn't around much."  Like my clients, I'm sad that I didn't have more time to talk to my father, argue and disagree, and ask for advice. I believe it would be comforting to have words on a page that my father wrote for me that I could read again and again when I longed for a connection that has been forever broken.

This is one of the reasons that I strongly recommend that my clients write an "Ethical Will" or some other type of letter to their loved ones. I try to make it easy for them by putting all of their "important legal documents" in one hard-cover notebook that has plenty of room for growth. And while I assist clients in putting other documents in their notebooks such as car titles, beneficiary designations, pre-paid funeral contracts, and identification of financial accounts, I encourage clients give their meaningful possessions and words to those who come into possession of the notebook after they have died. 

So on this father's day, think about what you would like for your family to know once you can no longer tell them in person. Write it down. Spell out the influence someone has had on your life, and thank them. Describe the influence you hope you have had on their lives. Getting in touch with the profound gratification you will likely feel for the opportunity you had to be a parent, or a child, will not only help others with their grief after you have died, it will also make you feel good while you're still on this earth.

I often hear presentations about Websites For Attorneys and worry that my site needs some time and attention that I've not had to give. When I started my blog, I heard the same advice from lots of sources:  "You've got to keep it current if you start one." Well, that's technically not true. Mine hasn't gone away even though I've not made the time to post on a regular basis. My goal is to bridge the gap from information from the start of my practice to my life and practice now.

I love it when I learn new words or concepts that ring true for me the first time I hear them. That's what happened the first time I heard the word, deprescribing. We all know what it means for a doctor to "prescribe" medication. Deprescribing is the opposite of that. It means that a doctor is working with her patient to evaluate all prescribed, and over-the-counter medications, to determine whether any of them can be "deprescribed" or "discontinued" in a therapeutic manner. According to some authorities, it is important for older members of the family to periodically evaluate all of their medications with their doctor to determine whether there are some that need to be deprescribed.

I also love it when my profession overlaps with a family member's profession. It makes for very interesting conversations and learning experiences at family reunions. I have been spending time with my niece who is a pharmacist. It is fascinating to learn more about the important contribution pharmacists make in our community. Now, when I meet with clients and their families, I often encourage them to reach out to their pharmacist to ask questions and get clarification about the medications they are taking. Oftentimes, these critical conversations can lead to better management for ones’ wellbeing and inspire future discussion with one's family physician. 

I used to think the saying Time flies—and it speeds up as you get older! was just something older people liked to say. They always seemed to pull it out as a way to advise younger people to make the most of their time. And now that I am older, I understand the truthfulness of this saying in my own life and in the lives of my clients.

Since my last blog entry in January, I have experienced the untimely death of my beloved sister-in-law who was only 56 years old. Then a few months later, I had a serious biking accident that could have very easily led to my own death or serious disability. I flipped my bike, landed face down on the edge of the sidewalk, bounced, and flew through the air to come to rest down an embankment covered in soft patch of springtime poison ivy. Within seconds of confirming that my teeth were still attached and I was not disabled and still alive, I felt gratitude. I believed in that moment that not only had I been blessed by avoiding a head-on collision with oncoming traffic on one side and a light pole on the other, but that I would recover from my injuries and my life would never be the same.

I’ve already written about the practice of elder law and how my work with others requires conversations about death, disability, and loss. I’ve often referred to these conversations as sacred conversations. My experiences this year have reinforced the sacredness of these conversations in my own life and my commitment to my clients and their families. But there is only so much time and a limit to the number of clients that I can see. So, together with my office manager, Sandy, we have decided to experiment with facilitating a public gathering to see whether these conversations on a larger scale can be beneficial to those who attend. We are calling it Shaping Your Future: Decisions Only You Can Make. I am inviting others to meet with me from 4:00 - 5:30 PM on the third Tuesday of the month at The Mayton Inn, located in downtown Cary. The topics include:

Each month’s topic will be posted here on my website. At this time, we are asking for a $5.00 donation for the space and encouraging those who attend to plan to have dinner or a drink at The Mayton Inn’s restaurant and bar, Verandah. Please RSVP here. We look forward to seeing you: September 20th: What’s the Big Deal About Wills & Trusts? October 18th: Straight Talk about Long-Term Care Options

I'm older than some of my elder law colleagues, having lived a full life, experiencing marriage, divorce, births, and injuries and deaths of friends, family, and collegagues.  I'm fortunate to have an office manager, Sandy, who also has lived a full life, experiencing tough situations that enable her to understand the importance of our work with others.  As members of the sandwich generation, we both have cared for children and godchildren, parents and grandparents.  So, we've seen alot and we know the importance of understanding each family's unique situation.

I've loved country music since I was a kid. It’s a delightful pleasure when a song comes on the radio that warms my heart and motivates me to sing along. The other day as I was listening to Tim McGraw’s song, “Live Like You Are Dying,” I got inspired to write this blog that has been whirling around in my head for awhile now.

Tim McGraw’s song is a story about an encounter with someone in their early 40’s who has been looking at x-rays, talking ‘bout the options and talking ‘bout sweet time. When the song writer reflects that this might really be the real end, he asks his new friend something like, what do YOU DO when you get this kind of news?

That’s when the chorus, a joyful paradox, makes me sing even louder, “I went sky diving. I went rocky mountain climbing. I went 2.7 seconds on a bull name Fumanchu. And I loved deeper. And I spoke sweeter. And I gave forgiveness I’ve been denying. And he said someday, I hope you get the chance to live like you are dying.” I've had the privilege of getting to know many people who live life in the freedom and joyful celebration of life that Tim's song so artfully describes. And for the most part, these folks have developed a healthy appreciation of their own mortality. My theory is that this perspective about living life to the fullest is most pronounced in people who accept the certainty of death. It is for this reason that I love working with clients who are living their life in the full awareness that they are dying.

Practicing elder law like a social worker gives me a heightened appreciation for the importance of delving into a client’s life story. I never accept representation of a client until we have had a two-hour consultation. I know there are opportunities to purchase important legal documents for a flat fee with a limited time investment, but I believe that it takes time to fully assess a client’s strengths, challenges, needs, values and wishes in order to draft documents that accurate reflect the client's goals.

I’m happy that many families select me because I’m trained as a clinical social worker. I can often see hope and a sense relief in potential client’s eyes when I can sympathize, and often empathize, with their family situation. I find that the hard topics my clients and I discuss, in order from the easiest to the hardest, are: death, finances/budget, potential loss of independence, and finally, a family member’s or beneficiary’s mental illness, addiction, or disability. Just in the past two weeks, I've had two clients shared their revocable living trust estate plan drafted by attorneys who did not know that they had family members with some type of special need. While for the majority of my clients, a revocable living trust is not needed, I always explain the pros and cons of simple wills versus revocable living trusts. However, trusts are a great tool for helping clients achieve their goals when it comes to making plans for others with special needs or young (or immature) children. 

I enjoy taking the time to draft the important legal documents for clients that reflect their needs, values and wishes. For example, I do not use the standard statutory forms for the healthcare power of attorney or living will. When applicable, I like to include specific information such as contact information for the client’s pre-paid burial contact, or directions for contacting an agency such as BioGift when someone has contracted to donate their body for medical training purposes. Sometimes I include specific messages from my clients to their family members when our discussion about their end-of-life reveals a message too precious to only be share in my office.

Every day, I strive to live life like I am dying. In my work with others, I enjoy sharing this joy of living by helping my clients and their families achieve a peace of mind about their estate plan and healthcare plan so that they can put these documents on a shelf and enjoy living life like they are dying.

What are the costs to you and your loved ones if you fail to complete important life and death planning documents until it is too late?  Do you want to make your own health care decisions or leave them to doctors who know little about you or your family? Do you want your finances maintained if you are incapacitated? Do you want your heirs to receive your assets and property? Being proactive can save emotional and financial costs to you and your family, and give you peace of mind.

To Atul Gwande, life is meaningful because it is a story. “A story has a sense of a whole, and its arc is determined by the significant moments, the ones where something happens…and in stories, endings matter.”

Almost no one leaves my office without me asking:  “If you get to a point where you need health care support, what is your plan? Where do you want to live?

In Being Mortal, Atul Gwande, a practicing surgeon and author of three bestselling books, talks about the decision that elders have to make about where they will live when they are frail and need assistance. First of all, it is not easy to admit when we become frail and need health care support. We all want to be independent as long as we can and we sometimes deny to ourselves or our family members that we need assistance.  We want to stay in control of our own lives.

One way to stay in control of your own life is to think ahead and make general plans about your best future that is based on your resources—financial, informal and natural supports, and formal supports. A generation ago, it was understood that aging parents would either move in with their children or would keep living in their home and their children would assist them until they died there. Gawande discusses how aging has changed, due in no small part to medical advances that have increased longevity. Seniors control their own lives longer and children often don’t live near their parents. It is often a difficult process to figure out if it is best to live at home with physical accommodations and support from aides or nurses, or live with family with support from aides or nurses, or live in an assisted living community. When a parent becomes frail, the children often make the difficult decision about where the parent will live. The decision is seen through the eyes of the child not the parent. So facilities market themselves to the children of the elderly – creating beautiful, hotel-like entryways, touting their computer labs, praising their exercise centers, and emphasizing their trips to concerts and museums. These features speak much more to what a middle-aged person desires for a parent than to what the parent does. Their biggest selling point is how safe they are.

Gawande suggests that parents need to make their own decisions about their treatment, where they live, and how they live, until they can’t make those decisions anymore. He reminds us that the sick and aged most often have priorities beyond being safe and living longer. They want to share memories, pass on wisdom and keepsakes, settle relationships, establish their legacies, make peace with their god, and ensure that those left behind will be okay.

So, Gwande suggests starting a conversation now about where and how you want to live when you are frail, and revisiting that conversation over and over as situations change. Being in control of your life as you age starts with a conversation now.