In our caregiver support group that AFTD sponsors, our conversations cover the gambit of needs and none more so than the question of, “What should I be doing now?”
There is no singular FTD guide, because as of now, there are at least eight different types of FTD that all onset differently. When you look at the entire body of dementia, the popular online organization Agespace claims there are about 400 variants.
Many forms of dementia have a behavioral variant that can onset with symptoms of denial, confusion, and anger. If your loved one is in this state, convincing them to sign, or even understand, a Power of Attorney can feel like an unwinnable battle.
I would argue that it is never too early to get these “mundane” documents in place. I call them mundane as they are the things we would rather not do – tedious tasks if you will. However, they are vital to have in place to ensure the proper care of your loved one and to protect your own rights, future, and finances.
There are many such documents to have in place such as:
- Power of Attorney (Healthcare and Finances)
- HIPAA Authorization
- Medical POA
- Advanced Directives
- Revocable Trust
These are often prepared by an eldercare attorney. When looking for such an attorney, if your friends and family do not have recommendations, I would suggest going to the National Academy of Elder Law Attorneys where you can search by zip code: Find a Lawyer (naela.org)
You can check our website for suggestions that I recommend when choosing one: Legal Resources For FTD Dementia Patients And Caregivers – We Are Us
I waited too long with my beautiful wife. While Maureen had the semantic variant of PPA and it did not present itself initially with behavioral dilemmas, it did quickly rob her of her executive functions to the point, little did I realize, she could no longer sign her name. We had to put the house on the market when I placed her in memory care due to the huge financial impact, but both of our names were on the house.
She was still at a point where she could understand what I was saying and agree or disagree, but her words were scarce, and like I say, could no longer sign her name. Fortunately, our notary was understanding, could see Maureen was who I said she was, and allowed me to assist her with the POA questionnaire by reading it to her. After each question, I received her verbal ok, and he allowed me to apply her initial. Together with her hand in mine, she held the pen and printed “Maureen”. We made it, but I waited way too long. It could have just as easily been disastrous.
Document everything as early as you can, while you can. This will protect both of you and take at least one stress away. You will then be able to focus on making good memories – cherishing whatever moments you have left.