Elliott’s Note:
After writing 9 Lessons I’ve Learned About Death and Money when my dad died, a reader said they would be curious to read an article from my mom’s perspective. They were interested in learning what would overlap and what would be distinct from a different generation.
I asked my mom if she wanted to write something. I don’t typically allow guest posts, but this is one exception I was happy to make. This is her creation with minor editing and a few notes.
Like much of my own writing about my dad, my mom told me, “Time for this to move on. I can’t continue to think about it! Finished it up. It was a bit cathartic but then it became a burden!”
I hope you enjoy my mom’s wisdom, reflections, and voice.
Introduction
I was asked by Elliott to write my perspective on the end of life lessons during the seven years my ex-husband battled with Stage 4 lung cancer, diabetes, broken bones, broken brain, and a multitude of other health issues.
Relationship Background and Caregiving Experiences
A little background of our relationship: I knew Darrel for 36 years. We were married in 1989, divorced in 1994. The divorce was a result of financial disagreements and his drug usage for a short time at the end of our marriage.
I was probably the most stable relationship he ever had in his life.
Upon divorce, I decided I would try to maintain a relationship for the sake of our son. I knew Elliott would grow up and see his Dad for what he was. Over time, Darrel and I became best friends. He could be loving and caring and also a very difficult person.
Some probably said I was codependent. What I know is that if the caregiving roles had been reversed, he would have done the same for me.
I have had other long-term care experiences with close family friends for whom my siblings and I were like family.
One of those friends chose to go live in skilled nursing care for her end of life. She seemed content there. Another friend was difficult when it came to the end of life. She also had cognitive impairments and refused care or assistance and lived in a 3-story old Victorian home where she grew up.
Each time she was hospitalized, we would try to find care for her. We were fortunate that she had not only one, but two, long-term care insurance policies, which covered her assisted living costs; however, it did not cover her private caregivers when she would return home from assisted living.
Because of her age, she had little monthly income from retirement and Social Security. She even had a live-in roommate for awhile but she burned out trying to care for our friend. Her last days were spent in memory care where she passed away from dementia at the age of 94. Because of the costs, we made the difficult decision to sell her belongings and home to pay for care.
Costs of Long-Term Care
I don’t know that I would say end of life care is lousy. I would say, no matter what type of care is chosen, it is incredibly expensive.
In Washington State, most assisted living facilities require two years of private pay before being able to pay with Medicaid. Because Darrel was kicked out of two skilled nursing and rehabilitation facilities (Elliott’s Note: This was due to a broken hip and later a broken shoulder.), two pain clinics, and one assisted living facility, finding assisted living was difficult.
Many facilities will not take a “difficult” patient.
At $6,000 to $7,000 per month, two years of care adds up to $144,000 to $168,000. This does not include other expenses including clothes, snacks, Starbucks, medication co-pays or over the counter drugs, dentures (lost at the hospital), and glasses.
Because Darrel was also kicked out of two pain clinics, he sought pain relief from the street. (Elliott’s Note: My mom and I disagree about the timeline. I’m confident my dad was using prior to his fall that broke his shoulder. While at some point he was using for pain relief, I believe it started recreationally.) With Darrel’s relapse, prior to entering care, he was spending up to $5,000 a week on drugs.
He did not have the kind of money needed to private pay for long-term care for years. This was explained to him for two to three years before the end of his life.
He was never a good money manager so the explanation didn’t matter to him, cognitive impairment, or not.
Simplifying Is Important
Simplicity does make life easier, in some respects.
One gift Darrel gave us was to voluntarily quit driving and selling his car about three years into his cancer diagnosis.
Because Darrel did not always tell the truth, I suspect his decision may have been because of a “close call” while driving. Parked in his driveway one day, I noticed the entire side of his car had been sideswiped. He claimed it happened while in a grocery store parking lot. I have my doubts.
However, choosing to give up driving was a blessing to us so we did not have to take away his keys.
Although we had power of attorney, we had to complete the forms for the bank’s power of attorney. This was all great except Darrel could revoke it at any time. Although it didn’t happen, I had visions of a revolving door of completing the forms, revocation, and on and on.
Having just one bank account also helped us easily track how much money he was spending and how much remained for care.
Additionally, Darrel was a renter and not a homeowner. Elliott communicated with the landlord about the issues we were facing with Darrel and continued to pay the rent even when Darrel went to an adult family home.
Darrel also had few belongings. I did coordinate three different moves for him in the last two years of his life (from one apartment to another, for his 48 hour assisted living stay, and to the adult family home).
Each move, I got rid of more items. Near the end, it was important for me to get his permission to empty his apartment.
Finally, several months into his stay at the adult family home, he gave his permission. I was able to empty his apartment.
This was much different than emptying our family friend’s 3 story Victorian home. She was a hoarder. After much work by her friends, we hired an estate company to sell or haul off the rest of her belongings. That process was overwhelming.
Difficulty of Setting Boundaries
Setting boundaries was probably the most difficult part of this journey for me.
I am, by nature, a giver. Hindsight tells me I did too much. When caught in the moment or the latest crisis, it is difficult to say no to a loved one.
Darrel made bad choices, again and again. I was trying to overcome those bad choices for him. It may sound simple, but it can’t be done.
With the help of counseling from an eldercare therapist and assistance from an eldercare case manager, I was able to set a few boundaries. This experience taught me that everyone has different limits. Whichever ones you choose are the right ones for you.
The times I walked away was when he chose to start using drugs again, when he got himself kicked out of the assisted living facility, when the daily demands were just too much.
I had neighbors and his family calling me telling me I had to do something. I had a hospital placement person suggest he come home and live with me.
It was easy for others to give advice, they were not the ones doing anything.
And yes, I cried so many tears, hurting for this difficult man who made bad choices. Choices I could not change.
My best support during this time was Elliott, who always answered his phone to listen, my rock who was many miles away. Other great supports were friends and my family who just listened to me (over and over and over again), the eldercare case manager who I could call and ask her to do some task that I just could not manage anymore, the eldercare counselor who said over and over, you have to let him fail.
It was hard. It was so, so hard.
The gift it gave me was to listen to others as they go on this journey with a friend or family member and to try and provide small hints that it might be time to take care of themselves.
Prepaid Burial and DPOA
The prepaid burial was definitely a positive in this situation. I was with Darrel when he met with the mortuary’s representative. When Darrel passed, it made it easy to decide what to do and the mortuary took care of everything. They communicated well with Elliott and met all of our needs.
I have only recently learned about the difference between springing durable power of attorneys (DPOA) and regular ones.
Springing DPOAs require a physician to declare the individual incompetent, or lacking capacity to make decisions. If there is no primary care physician, then two medical professionals would need to declare the person incompetent.
Although most lay people would have declared Darrel incompetent and unable to care for himself, there was no physician willing to declare incompetency even when he scored low on cognitive assessment tests multiple different times.
Processing Loss
Processing loss is a personal journey.
Our experience at the end was so filled with negative experiences, it was difficult to remember the good things about Darrel. Although I wasn’t quite ready to hear it, I did appreciate those who commented about all the good things he did for people.
How he stepped up to take care of an elderly friend of my family. How he cooked amazing dinners for my mother after my Dad died. How he helped out his neighbors and friends on a consistent basis. How much he loved his cats. And, how much he loved his son and daughter in law.
Inheritance
I have received three inheritances in my lifetime.
I did not receive anything from Darrel but that is okay because it went to our son. Inheritances are strange in that all of a sudden you have a certain sum of money that you didn’t do anything to earn other than know someone.
For the most part, I added that money to my investments. I know I bought at least one car with some of the money because cars are such a huge debt and I simply wanted to pay cash.
Because I invested that money many, many years ago, I am now quite comfortable in retirement. It was not a huge sum at the time, but over the years, has increased considerably in value. I am glad I did.
My parents would be happy to know I am comfortable now.
Processing Grief
Grief is very unique to the person experiencing it.
I think I will grieve for a long time, maybe for the rest of my life. Very few days go by that I don’t miss my parents. I think it will be the same with Darrel.
After all, he was in and out of my life for as long as my parents.
I will miss the things I can’t replace like our near daily conversations about what was going on in our lives and the world. I will miss his sarcastic and dry sense of humor. I will really miss his cooking. I cannot replicate his crepes, his lasagna, his macaroni and cheese or chicken fried steaks.
I will miss how the majority of the time, he was always there for me.
What I won’t miss are those last miserable years when he made so many poor choices about his life. He may have been medically compromised but the choices were his, and his alone.
I am still sad about that time and imagine the sadness will remain for some time.
End of Life Lessons Learned Through Caregiving
What were the lessons learned throughout the seven years of caregiving?
It hasn’t been quite a year since he passed. I believe there will be more lessons or take aways that will come to me, but these are the primary ones:
Eldercare Consultant
At the first hint there may be challenges, I highly recommend hiring an eldercare consultant and/or case manager.
They helped guide us through the challenges of a “broken brain”. They reassured us we were doing all we could. They showed up consistently to take on the “hard” stuff when I could no longer do it. They were worth every penny spent and then some.
Find Support
Find your support.
Whether that support is a listening ear, a lunch out, or someone to cry with, find it. For me, it was long distance support from Elliott and his wife who always offered an ear, allowed me to cry in frustration and anger, and listened with unconditional love. Elliott showed up when absolutely necessary and when I had more on the plate than I could handle.
My close friends and family listened, probably more than they wanted. Some of the caregivers, nurses, and doctors also listened. Medical care was definitely a hit or miss.
Take a Break
Take a break.
Even if it seems like there is no time in the day for yourself, it is imperative you find a few minutes for yourself. If that means a walk around the block, a few minutes to watch TV, listen to music, or just stare into space. Take that time for yourself.
Getting outside helped me a lot, including 20 minutes near Puget Sound where I could smell the beach and the salt air and feel the breeze and hear the silence except for the birds.
Set Boundaries
Setting boundaries is important if dealing with a difficult personality.
If possible, learn to say no. Practice saying no. Let go of your guilt for not doing more.
These are all very easy to say. Putting them into practice, for some, can be almost impossible. I was not very good at this, even with professional counseling.
Simplify Your Own Life
If possible, simplify your own life for your heirs or family and friends. It makes it so much easier on them when you pass.
They probably don’t want your belongings, but it makes sense to check with them first. I have been simplifying for five years now. I try to have more things leave my home than enter. We spend a lot of years accumulating things. At some point, it is time to say goodbye to those things.
Finally, give yourself grace. You are doing the best you can. Forgive yourself. Love yourself.
