End-of-life Planning: Plan Ahead

First published in April 2018, this updated article includes updated information (see epilogue below).

I usually write about the many ways to heal your body. However, after my own recent experiences working through the trauma of an aging parent, I wanted to pass on my newfound knowledge in the hopes that it helps someone else. My brothers and I wish we had had a better map to follow as we negotiated the twists and turns of decisions that needed to be made as we tried to do what was best for our dad.

If you have an aging parent or if you are a parent with older children, I would strongly encourage you to do the uncomfortable — to have those end-of-life discussions with your loved ones before it is too late. Talk about options, preferences, wishes, etc. (See links below.)

I had some of those discussions with my parents over the years, but as my four brothers and I have come to find out these past couple of months, these discussions were not enough. The legal documents put in place were also not enough.

It has been a rough couple of months for my family, especially my dad. Below in the epilogue the story continues during the last two years of dad’s life. 2018 began a new chapter in my dad’s life. My brothers and I had helped him pack up and sell his home of 20 years and in early January we helped him move into an independent retirement community. It was a nice place with lots of things to do, but the January winter in upstate New York was a rough one that year. It was difficult for dad to get from his villa to the main building.

Somewhere along the way, Dad had a stroke. So minor that his five children did not notice any signs. When the symptoms of the stroke finally became apparent, he was brought to the hospital. Within a few days of being monitored, Dad had another stroke and lost additional ground. He also broke his hip while in the hospital, which resulted in a partial hip replacement.

After 5 weeks in the hospital and 4 weeks in rehab, Dad found himself in an assisted living facility with enhanced care. By the time he landed here, he had been in 9 different homes and/or rooms since the beginning of January. He was also on a slew of medications for the first time in his life. (He had only been on a low-dose blood pressure med and eye drops before the stroke.)

Naturally, there is confusion and uncertainty as he continues to try to recover as much of his previous self as possible. It takes time for the hip to heal and the brain to create new connections. However, at the age of 85, it all takes longer.

During this whole process, my family learned many lessons, some of which I share below.

• With the constant change of caregivers that naturally occurs in a hospital setting, we found ourselves having to be Dad’s spokes persons, staying with him during waking hours and repeating his story over and over so that the next caregiver would do the things necessary to keep Dad comfortable and safe.
• Coming from a more natural lifestyle where wholesome foods and daily natural supplements were a way of life for my Dad, we were not used to letting go of Dad’s health decisions and putting them in the hands of doctors we rarely saw. (Supplements are not allowed in a medical setting.)
• Although Dad had a Health Proxy that indicated he wanted no heroic measures to save his life, we found that this very detailed document did not clearly state “do not resuscitate.” It took a week to figure that out and get it in place. In most states you need a MOLST or POLST document to make it official. (You can also obtain a DNR bracelet to wear.)
• Dad had a Power of Attorney drawn up years ago but it still had my Mom (who is no longer living) as the primary. New York State laws changed since then as well, making the document out of date. Although still legal, it is not easily being accepted by insurance companies and other entities that need to be contacted and many unnecessary hours have been wasted trying to communicate and document changes.
• Dad has always been adamant about not wanting to live with one of his children as he got older. However, we never discussed other possibilities in more detail. If we had visited other options sooner, he may have thought differently.

I am sure there are more lessons. One lesson more personal to me is the fact that Dad did not want heroic measures to save and/or prolong his life. I question how many medications he has been given over the course of the last 9 weeks and if that in and of itself is not a heroic measure. Some may be helping him live longer, but known and unknown side effects are creating other health issues that are making his quality of life worse.

As the oldest sibling in the family, I look back and wish we had done some things differently. It is much more difficult to make decisions and changes once a tragedy occurs. I am writing this now in the hopes that it helps someone else better plan their future.

In the course of our searching for answers I came across a great book by Dr. Jessica Zitter, titled Extreme Measures: Finding a Better Path to the End of Life. The book provides you with many questions and issues to consider as you talk to your loved ones and plan for the future. In addition, it helps you better understand the current healthcare system and how to work within “the end-of-life conveyor belt.”

There is also this podcast interviewing Dr. Zitter. I highly encourage you to listen to the podcast and/or read the book. Dr. Zitter really does a good job of explaining the details, including the paperwork you should have in place.

It is never too early to think about these things. It is my hope that Dad can recover more of his previous self and still live a quality life. Time will tell. In the mean time, may you benefit from the lessons of my family and be more prepared.

Epilogue. . . . almost 2 years later. . . 

Dad passed away the second day of 2020, almost two years after his first stroke.

Dad was always about helping others. So, in memory of him, I want to pass along some additional wisdom we gained as I helped dad take care of his paperwork and as my brothers and I worked together to care for my dad in his last few years.

It was two years ago that dad ended up being “in the system” of old age. The system of getting older and having to rely on others. The system of retirement facilities and more medical intervention. The system of slowly relinquishing control of things in your life.

Mom died in 2010 and dad continued to live on his own. We had just help him move into a retirement villa where he could still drive and live on his own. He exercised close to an hour every morning. (His favorite exercise equipment included the mini-trampoline, rowing machine, and glider.) Until then he had also done his own cooking and cleaning, kept a vegetable garden, and did all his own yard and garden work. He even continued to help a friend with her yard work.

When he first had his stroke at the age of 85 and then fell while in the hospital and broke his hip, my brothers and I still had hope that he could recover. His physical body had been strong when he entered the hospital. He was a different man when he left the rehab center, but we wanted to give him the best chance for recovery.

Throughout this process we asked many questions, spoke with many people, and figured out a few things by trial and error. To continue what I started above, below I will share some of what we found. Some of these topics are more personal than others, but I hope that some of this information will help others have a smoother end-of-life journey.

Rehabilitation Centers – Even though dad stayed in a rehabilitation facility for four weeks after his hospital stay, it surprised us to learn that the actual rehab only consisted of under two hours a day. He actually ended up sitting or lying around much of the day, often in front of a TV. He was not your typical rehab patient. After breaking his hip and being in the hospital for so long, he had lost a lot of ground. We wish we had been able to offer him more. He needed much more stimulation both physically and mentally earlier in his recovery to rebuild his body. (This is proven to be especially important after severe brain traumas to help the brain rebuild neuron connections.) We wished we had asked more questions upfront to see if we could supplement their therapy.

Finding the Right Care Facility – When it comes time to look at care facilities for your parent, look around and check out all your options. Dad was run down mentally after his stroke and physically after being in the hospital and rehab for 4 weeks, so there were several facilities that declined him. No one knew exactly how much brain capacity he would recover once he was able to stay in one place, get the many medications out of his system, and have time to readjust. We knew he could recover at least some of his brain and strength over time, so we wanted him to be able to live as independently as possible for as long as possible. With the help of a consultant, we were able to find one assisted living facility willing to work with us by allowing us to bring in extra care at night as dad adjusted. We temporarily paid a separate care service to come sit with dad during the night as he worked on recovering.

Home Healthcare Options – Home healthcare might have been an option, but because dad had slipped so far so fast we were hesitant to take this on. If home healthcare is possible for your own loved one, I would suggest at least looking into it. There are pros and cons, but the biggest pro is that you have more control over his living environment (ie: food, movement, sunshine, etc.) and more flexibility to bring in your own team of experts to supplement the standard protocol. You are not tied by the rules in a particular facility. The biggest drawback is that one person in the family needs to commit to being the overseer of the schedule. As it turned out, a facility was a better fit for dad. Because there were multiple caregivers on the floor at a time there was more opportunity to interact with the staff. He liked making people laugh and flirting with the ladies.

More Physical Therapy- Physical therapy was prescribed on several occasions but only lasted about 6 weeks each time and only for a limited time each day. There was a wonderful physical therapy room in the last full-care facility that included exercise equipment, but it was not accessible unless physical therapy was prescribed. We asked. The room was often left unused which was a shame because extra stimulation would have been helpful. Instead, we visited and walked with dad as much as possible. Dad loved to walk whenever he could. After the stroke and hip replacement he needed a walker, but he continued to move around every chance he got.

Long-Term Healthcare Policy – Dad had long-term health insurance. In the full-care facility it covered about half of his monthly costs. If you or someone you know is looking into long-term care, there are a few things to consider: (1) Many policies restrict you to stay in the state where the policy was made; so, if other members of the family live elsewhere, relocating the parent may not be possible. (2) Long-term care policies are expensive. Two ways to keep premium costs down is to obtain the policy at a younger age and/or opt for a longer “elimination period” (i.e.: 6 months instead of 90 days). (3) You can also save on policy premiums by reducing your daily rate. However, at $266 per day, dad’s policy only covered about half of the facility costs, so you need to think this through. (You may want to call some care facilities to determine their daily costs.)

Medicare – If you live in the United States, make sure you sign up for Medicare when you are supposed to at the age of 65. If you sign up after that, you will incur a monthly fee for life. Dad signed up late and was paying $12 to $14 each month for years. Medicare can be great if you have an existing health condition or have a medical emergency. However, if you are trying to live a more natural lifestyle you should also know more procedures and/or medications may be suggested by your medical provider because these things are much cheaper and/or free on Medicare. You may need to be more discriminate when you have healthcare checkups.

Hospice – The end came for dad more suddenly than expected. He had had pneumonia several times these last few months, but kept pulling through each time. Luckily, we had dad in a full-care facility that could also provide hospice care, which was wonderful. However, we were so caught up in the moment, it did not occur to us to request this until another family member suggested it. Remember this when your loved one is nearing the end. The hospice team was there to make dad as comfortable as possible the last few days, shifting the focus of his care. They also provided comfort to the rest of the family, telling us what to except and keeping us informed until the end.

Funeral Arrangements – When it came to dad’s wishes after he passed, he was very clear about what he wanted. He made sure to have multiple conversations with me, telling me that he wanted to be cremated and set next to mom’s casket in the crypt. He also told me how he wanted his funeral. That was so helpful to the whole family as we went through the trying time after his death. Right away we knew what to do and it made planning the funeral arrangements so much easier. We gladly met all of dad’s wishes. He wanted it simple and kept small. However, to also help us in our healing, we added a “celebration of life” gathering after the services. The whole day could not have been more perfect!

Cremation – I also wanted to take a moment to discuss cremation. It is something my dad knew he always wanted. It may not be for everyone, but it is worth mentioning since there is a big cost difference between a cremation funeral and a casket funeral. We had the latter for my mother and it was almost twice the cost of dad’s funeral. It is something to consider. (We also found out that there are cremation-only funeral homes that can save you additional money if that becomes necessary.)

Finances –  You may not think it is appropriate to talk about the financial side of things so early after dad’s death, but pre-planning this part is a crucial part of any end-of-life planning. As I mentioned in the earlier part of my post, we had to have the Power of Attorney (POA) redone in order for me to call on dad’s behalf for insurance purposes. It also allowed me to fully take over the rest of dad’s paperwork. I could close accounts no longer needed and check the status of other items. I also knew that dad was in the process of updating the beneficiaries on his remaining investments. The updated POA allowed me to helped him finish this task. The other smart thing dad did was make me a joint account holder on his bank accounts. This not only made it easier for me to pay dad’s bills, but it allowed the family to have access to this money after his death. (If there is a safe deposit box, you should add a family member who can sign for it; otherwise you will need a lawyer to access the box after a person dies. With dad’s permission we emptied his box while he was still alive.)

Assets – Dad had already sold his home two years prior. We also sold his vehicle for him when he could no longer drive. Because we had done enough pre-planning, everything was accessible after dad’s death and anything that was left was easy to distribute according to dad’s wishes. An attorney was not even necessary to take care of the will. (This would not have been possible if there were still assets to sell or if my name was not on the bank accounts.)

These past two years, before he passed in January 2020, were tough for dad. They were tough for the rest of us too as we watched our strong father slowly fade away. He was strong in many ways. Whether he fully realized it or not, he had done quite a bit of end-of-life planning. He had determined certain things ahead of time and put others things in place that help us through some of the toughest decisions, especially in the end.

What makes it even more special is that dad’s planning helped to bring our family closer together. A small family-only funeral allowed each of us to speak openly about dad and we bonded from that. Easy funeral arrangements allowed us to concentrate on grieving and notifying other family and friends. A cleaned up financial situation allowed us to bond over the legacy that mom and dad left behind, rather than cause friction that you hear about all too often. We are a better and stronger family for it all.

Overall, dad lived a good life — a life with purpose, married to his true love, and a life that will continue through his children and their families. I so am thankful he was my dad. And, I believe he is in a better place, with his loving wife once more.

Many Blessings to you and your family.