Mom newly diagnosed

kac3526

My 79 year old mom was officially diagnosed with frontotemperal dementia on March 5.
Putting a name to her condition is helpful, but devastating at the same time.
How can I as her 56 year old daughter be a help to her and my Dad at this stage, where her symptoms are getting worse, but she's still pretty functional.
I'm the oldest child and living closest to my parents. My brothers are both 3-4 hours away.

caregiving daughter

I am sorry to hear. Please try to learn everything that you can. Investigate community resources that can foster education but may also be options in the future for respite and other needs. Even though your brothers are 3-4 hours away, I am hopeful that they are fully aware of the situation—both in terms of diagnosis and how it presents each and every day. Quite frankly, our loved ones often sound better on the phone that how the situation is in person.

SDianeL

welcome. Sorry about your Mom’s diagnosis. First thing is to meet with an elder care attorney and get DPOA and other documents like Medical POA, wills, living will done for both parents. Next, learn all you can about the disease and how to care for them. Is your Dad physically able to care for your Mom? Read the book “The 36 Hour Day” and have your Dad read it if he will. Also search online for dementia caregiving videos by Tam Cummings or Teepa Snow. They are very helpful. If your Dad is going to be the primary caregiver, he will need help. Lawn care, housekeeping help, groceries delivered for starters, and he will need respite care so he can get a break. Where will that help come from? Medicare does not cover care. That's another discussion to have with the attorney when you meet. Please don’t delay in meeting with the attorney. Things can change rapidly. Don’t tell Mom that it’s due to her diagnosis. Just say it’s because they are getting older. I would speak to the attorney privately before the appointment. Come here often for info and support. 💜

H1235

Welcome. I’m glad you found us. The beginning of this journey is difficult. Well, who am I kidding the whole thing is awful. Anyway, one of the most important things to do is get legal matters taken care of. Someone (probably your dad) needs to be appointed durable power of attorney with a backup. Since your mom can’t act for your dad if there were a medical problem with him, he should also appoint someone other than your mom as his DPOA. Dementia care is very expensive. He should talk to the lawyer about the possibility of Medicaid, the possible need to protect money in a trust. A living will is also a good idea. These are things you can learn more about and then explain the importance to your dad. It’s helpful to learn all you can about dementia. One of the most important lessons I have learned is never try to reason with a person with dementia. They are not capable. Trying to explain why they can’t do something will usually cause them to become very upset. Anosognosia. I will attach a few resources for you.

DBAT.pdf

Anosognosia and Dementia - AgingCare.com.pdf

understanding-the-dementia-experience.pdf