Important Things to Have Now, Planning for Overall Care
In our last article, Making Sound Healthcare Choices and Decisions in your Lupus Battle, we talked about health care agent directives, medical directives and health insurance. We discussed how important it is to make choices that help you battle lupus more effectively. Making healthcare choices that will help when you are hospitalized or unable to advocate for yourself. In this article, let’s talk about planning for end-of-life care and the important things we need to have in place.
Planning for end-of-life care
We know that planning our final days is never easy. It conjures up so many emotions and makes us fearful of what’s to come for us with lupus. Talking about death and planning for it is extremely hard, but a necessary discussion to have. Putting things in order and planning ahead is always important to keep your mind at ease about your care towards the end of your life.
Why end-of-life planning
I won’t lie, I have had a hard time discussing plans that I want when I transition to the spiritual realm. It kind of makes me feel my journey with lupus is just leading to my demise. Even though I know death is inevitable, I often don’t want to talk it out. Having those discussions forces me to think about when my own demise would come. This has brought some anxiety and fear in me that is hard to shake.
I had to get over myself. Get over the fear and remove the anxiety and just jump into the discussions with my spouse. We discussed how important it is to really prepare and plan so when the time comes it is not stressful for him and other family members. I found the most important reason to plan this all out is to communicate my own wishes beyond my medical directives.
Smart ways to plan
I had to charge myself with a challenge. Learn as much as I could about it all and execute a plan. I started with several items as listed below.
Access to medical records
Throughout my medical directives, I made a point to give access to those I trust for my medical records. If I wasn't able to advocate for myself, believed it was important to name someone else access that I trusted fully. Not a necessary step but it helped me early on in diagnosis to feel secure.
I checked to make sure I had a life insurance plan that would cover at least my funeral costs. Ultimately learning from experience, funerals could cost at least $7,500. Being in situations where I had to beg for help to bury loved ones was horrible. I wanted to make sure I didn’t burden my family with having to worry about that expense. Having a chronic illness can make it difficult to get life insurance so make sure if you don’t already have it to find someone to help you acquire it. No one should have to raise money to bury their loved one.
Living will and trust
We worked on getting a living will and trust in place. When I was diagnosed my son was a toddler and we just moved to a new home in a new state. It was important for us to make sure we had a plan as to who would look after our son and assets.
These things were helpful in giving me peace of mind. It ultimately helped me feel less stress about lupus simply because I knew there was a plan. After I started the conversations and plans it was much easier to vocalize my wishes and be okay with doing it.
I know you don’t want to think about dying or how your funeral will be paid for. It’s a hard subject but it’s an important part in our healthcare planning. It can help you learn more about yourself as you deal with your wants and needs for your transition.
How much has the financial burden of lupus negatively impacted your life?