One month ago, we lost my dad after a short time with a cancer diagnosis. Don’t worry. I’m not going to use this space for trauma dumping or grief competing. I am, however, interested in sharing some of my experience about the end of life with a parent, especially for those of you who have not yet lost a parent. To me, very little of this month (and certainly the preceding three months) has been what I had expected it would be. The biggest comforts, though, have come from the few times I knew what to expect. I’m hoping this post might provide you some help in the future with your own parents.

There is no wrong. This is perhaps a bit hyperbolic, but stick with me. When faced with impossible situations at the end of life, you have to make a ton of really big decisions and you can’t be slowed down or stuck by fearing that you are making the wrong choice. You just have to do the best you can in the moment with the best information you can get. 

The internet is actually helpful. Whatever your aging parent faces at the end of their life or whatever unique situation you are in, you will surely turn to the internet for some additional guidance. Do it. I became an expert in many more medical areas than I had ever wished for, but I’m grateful to have had the information. I have consulted the internet for definitions, advice, expertise, research, crowd-sourcing, and also escapism.

Know what you don’t know. This falls into two categories: financial and medical. I cannot stress this enough. Have a conversation with your parent(s) before it’s too late. Honestly, doing it ridiculously early, when your parents are healthy and cognizant, is way easier for a million reasons, but either way, the time is now. Today. Seriously, after you read this, call your parent. 

You, as their offspring, should know where their money is (investments, accounts, debt, insurance policies, social security, pensions, assets, properties, etc.), how to access it (passwords, account numbers, determine Power of Attorney, keys to safe deposit boxes, etc.), and who the people are that they deal with (lawyers, accountants, financial advisors, insurance agents, etc.). You should know who ALL of their doctors are, be listed on their HIPAA forms at EACH office, know what their medications are and when they take them, what pharmacy they use, what health insurance they have, what their detailed medical history is, have a healthcare proxy in place, and know their end of life wishes (DNR, Living Will, Hospice). You should know what their funeral wishes are, including burial/cremation and if a cemetery plot/deed exists. Also, ask if they have things hidden (valuables, paperwork, keepsakes, letters) so you don’t accidentally give them away or throw them out. Ask them who people are in their picture albums and about their own personal history. 

Seek out help. If you aren’t already in therapy, get thee to a therapist. Shit’s about to get real real.

Invest in tissues. I honestly had no idea my body could produce so many tears for so many weeks. Embrace learning how to cry publicly. I mean there’s nothing really to learn, but you will discover you will do it even in front of complete strangers. Just let it happen. It’s actually quite cathartic and people are surprisingly generous about this.

Say no. When you are going through hard times with your aging parent and/or end of life with your parent, just say no to everyone else and be okay with it. Say no to the regular things you wouldn’t even consider saying no to previously. You don’t have time or energy to be a regular person in society. Guess what? No one expects you to be, so just focus on your family and return to the rest of your life in small chunks when you’re feeling up to it.

Pay attention to who shows up. People will come out of the wordwork to help you. They will most likely be people who have already gone through this. You can often identify them because they are the ones who start a text with, “You do not need to reply to this text. Just know I’m thinking of you.” They know how impossible it all is and they know how much they benefited from the kindness of those who went before them. It’s a terrible, horrible, miserable club to be a part of, but once you’re in, it’ll change your life and how you support others.

Hard conversations will become the norm. I am still floored by the things that were discussed out loud in the past four months. Most of them were things I don’t want to relive in my memory, but all of them were necessary. Lean in to these, even if they are uncomfortable, because conversation is the thing you can never get back after your parents pass.

Be open to new experiences and people. You will meet the most incredible people in your path through this end of life stage, if you are open to that experience. Look for these angels and when you find them, thank them and then let them help you. Be that person for some other stranger in the future. You’ll know when you know.

See siblings as cherished companions in this journey. No one knows your parents like your siblings. And yet, they know your parents differently than you do. Capitalize on this. Divide and conquer using the personality strengths and relationship strengths you all possess. Be open to increased communication and find a system that works for you. We started a digital folder that organized everything we needed to share with each other or would need for dealing with administrative duties. We also (still) keep a daily shared digital journal about what we need to document about our parent or any discussion items that can be solved through the journal. If you are an only child, you will have the disadvantage of handling things by yourself.  But you will also have the advantage of not having to negotiate with others about shared decisions.

It’s not as simple as it seems. I have lost people I have loved deeply. I have witnessed others lose parents. And yet, losing your own parent is a whole different ballgame. I’m not sure if it’s because you’re losing literally the person who has been with you your entire life (either as a supporter or a dysfunctional figure) or if it’s because you are also dealing with all of the medical and financial administrative nonsense that comes with being the child of a deceased parent. Either way, it’s more emotionally and administratively complicated than I had imagined.

Learn about death. I read an incredible book after my dad was diagnosed called With the End in Mind by Kathryn Mannix, a palliative care doctor. It was a really hard subject that was really easy to read. It gave me the information to know that my dad was actively dying and the tools to help me help him have a dignified death. Because of that book, I had the courage to sit vigil with my dad (and my family) for the last four days of his life. I bore witness to his passing, with my hand on his chest for his final breath. That book taught me how to give comfort and have comfort in the naturalness of death. 

Learn about grieving. Grieving a parent is WILD. My therapist shared her copy of Good Mourning by Sally Douglas and Imogen Carn, also hosts of a podcast with the same name. It is not a hard read. The book’s greatest strength is its ability to help you see the universality of the grieving process. Side note- losing a parent to dementia is its own cruel type of grief. This book will give you permission to grieve healthily.

Work on your own legacy. Whether you are nearing the end of your own life or far from when you fantasize that will be, you can work on building who you want to be in this world before leaving it. There’s no time like the present.

Make life easier for your kids. Full disclosure- we haven’t done this for our kids yet (because we are still drowning in taking care of afterlife administration and actual care of one parent, BUT we will set up all of this information sharing, wishes, and access to everything for our kids. Yes, we already have wills and life insurance (get both if you don’t already and you have kids of your own). But we’d like to make this as easy on our own kids so they are not hunting around for everything when we “join another party.”

There is no perfection in death, but everything doesn’t have to be so hard on everyone. If you can do some of this work beforehand it’ll give you more time and energy to live in the beautiful moments at the end of your parent’s life. Take steps now. I mean it. NOW. 

Hope this helps.

-D