Navigating the Swamp of Caregiving: Part Three: Bring a Map
Blog #5
I remember it like it was yesterday, but it was actually March of 2007. We tend to remember things that have strong emotions attached to them, and this was one of those occasions, although I am not proud of it. I was visiting my very best friend in Australia and she was my tour guide while I was there. For one day we explored Sydney and I vividly remember being just north of that beautiful famous bridge. What I remember next is actually embarrassing to admit because it shows a bit of my faulty character.
As we navigated the side streets and neighborhoods, we got a bit misdirected. To be clear, I have never been to this city before, but something in me, in that moment in time, without any map or smart phone in hand was confident that if we “just go that way” it will lead to where we want to land up. And it did not. I still feel that pang of embarrassment and broken pride. I still wonder where my assuredness of complete error came from when I had never been in those streets before. Why was I so sure of where I was or where I was going? I was completely wrong and, to be very honest, not very pleasant in my assuredness. Also, my feet were sore from walking far off the path that we belonged on. I had to eat a bit of crow and admit my shortcomings. Apologies and forgiveness are sacred and tricky parts of these situations, aren’t they? There is a little bit of healing required when something breaks in these moments.
When it comes to bringing a map into dementia care, it may be helpful to first discuss how messy and broken things can get without a map. All too often, caregivers find themselves struggling, afraid, tired and alone. I’m thinking of phrases caregivers have said to me in the past: “How will I know when it is time to get help?” “How will I know when it is time for memory care?” “How do I navigate breaking the promises I made to my spouse when we were healthy and young?” “Why didn’t I move her into memory care sooner? She loves it here!” “How do I filter through all the opinions of those (professional and unprofessional) around me without hurting someone’s feelings?” “How do I keep the peace when everyone is so tired and exhausted?” “How do I protect the inheritance I want to give to my children, yet justify using the funds we worked so hard for and saved for this rainy day crisis?” “I just don’t have the energy to navigate everyone’s drama and strong opinions!”. Sometimes they get too far down the path before realizing they needed a map in the first place. I think it’s important that we don’t beat ourselves up too hard if that is the case–this is the norm, not the exception, friends.
A great first place to start is always with a physician, followed by a neurologist and then a visit with a financial planner. Having decisions made and plans in place for health care and financial matters will help direct the path in dementia care. In addition, it’s important to have conversations early on about the wishes, preferences, and ideals of the person with the diagnosis. While it may not be possible to meet them all, it’s great to know what they are so they can be aimed for.
This is also a great time to meet with an attorney to complete all of your advanced directives, such as powers of attorney for health and estate, living wills, wills, trusts, etc. Some states recognize a form called the Five Wishes*, which is a great conversation starter when it comes to how a person wants to be treated in their last days. Conversations and written information make good reference points on our maps–the more we have, the easier it becomes to see our way forward.
Don’t get stuck having taken wrong turns and regretting bold, stubborn moves like I did in Sydney, Australia. Do the hard work of humbling yourself, asking for help and putting important things in order so you know where you are going and how to take the most efficient route there. This keeps everyone happy and energized with fewer proverbial blisters and fewer apologies later.
https://www.fivewishes.org/