The biggest enemy to care partners is self-doubt. I covered this recently at the AFTD Education Conference in Baltimore and see it every day.
Care is born out of love and a desire to do the right thing for your loved one. We understandably do not want to screw it up and worsen things physically or mentally for our loved ones. We want to do right by them. As such, we seek counsel from others that have walked this journey. If you are reading this, you are doing the same right now.
You are not perfect – you never were. FTD, for now, is eventually fatal. You are trying your best. Trust in your instincts.
We want to know about medications and therapies and run those by the medical professionals in our network. We want all those life hacks that others have tried with success and hope and pray they work for our loved ones too. We worry so much about quality of life because we love them.
Understand that if you have gone all-in as their primary care partner, then you likely know them better than most anyone else. What does your heart tell you? What does your gut say?
I hear MANY care partners worry that they are not doing enough or simply do not know what to do. I say again, “Trust your gut.” That does NOT mean trying medications without the supervision of a medical professional. I mean if you are wondering if they would like a trip to the beach – get prepared and try it. At Maureen’s onset, I was worried whether we should take this pre-planned Route 66 trip. We did and had a wonderful time, but the trip was different than past trips, and we adjusted fine. I did not let the self-doubt get in the way.
I mean if you are putting safeguards in place at home to protect them, and they still get hurt because of something you could not anticipate – do not blame yourself. You tried. Share with others on the journey, get input on alternate approaches, and trust yourself to try again.
Related, do you know when you make your best decisions? When you are well rested. To stay nimble on this caregiving journey, you need to take care of you. You need those breaks. Everything that I have shared here to ADJUST is designed to help you weather the challenges, give you support, and build your confidence. Again:
Assemble your network – an ongoing effort.
Document the mundane – just get it out of the way.
Journal your moments – give yourself happy memories and reflect on what you did well.
Understand your care options – there are steps that you can take, so it is not all on you.
Sing, smile, & celebrate – an FTD diagnosis is not the end.
Trust yourself – believe in what your heart and gut tell you.
I have faith in you and am always available to talk or find you resources. You’ve got this.