New to the group

Lgb35

Hi everyone. I am new here. My husband has been diagnosed with Neurogenerative Brain Disease. We are unsure the official diagnosis at this point as he is presenting atypical for Alzheimer's and FrontoTemporal Lobe dementia however they do feel it is one or the other. He is currently diagnosed with MCI. We are in our mid and late 50's. He is still working. At times I see things that make me think he won't be working much longer but at other times I am just not sure. I am worried and scared about our future and what that will look like or when things will become difficult. I feel a need to get things in order but don't even know where to start or who I should be getting in touch with.

CorrieG

I'm so sorry you are dealing with this. I can't imagine what it's like to not at least have a firm diagnosis. Getting hit with this makes it so difficult to move forward and know the 'right' path to take.

I'm a year into the journey and the two biggest things I did to help deal with this:

1. We hired a lawyer to get power of attorney, our will, advanced directive, etc. in place. We didn't have any of that together- it was a pain but I feel relieved that we have a framework to rely on when he's in the hospital or since he has trouble making financial decisions.
2. You have to believe that no matter how screwy things get and how inadequate your efforts seem, you are doing better than anyone else can to deal with YOUR situation. I still struggle with feeling like a failure and I constantly have to remind myself that I am doing enough and no one else knows what's best for us.

tgeno

Stacey, I totally agree with Corrie about getting with an attorney, especially one that specializes in wills and estates, and get your wills, advance directives and medical and general powers of attorney in place. We did this when my wife was diagnosed with AZ (early stage), and it took a huge load off our shoulders.

SDianeL

https://alzconnected.org/discussion/65486/new-to-the-group

StaceyL23 - Welcome. So sorry you are going thru this. This is the place for help and support. My husband still doesn't have a firm diagnosis after 2 yrs. He can't have an MRI and the VA is stalling about a PET scan. They "think" it's vascular dementia. A diagnosis may or may not help. Each person progresses differently and there is no cure. There are medications that may help the behavior when the time comes. Definitely go to an attorney NOW while he can still agree and sign his name. You will need it sooner than you think. There are 5 documents that our attorney recommended: 1. Last will & testament. 2. DPOA (Durable Power of Attorney). 3. Power of attorney for health care. 4. Declaration of Living Will & Designation of Health Care Surrogate and 5. Authorization for Release of Protected Health Information. Some you will want to designate an alternate in case something happens to you. Our attorney did the entire package for $400. We live in FL. Change can take years or can come quickly so be prepared. They can mask their memory loss and look like they function but when you look back you can see they weren't. About 5 years ago I noticed that my husband could no longer spell simple common words. (he's 78) I bought him an electronic spell checker device but he couldn't figure out how to use it. He misplaced items like glasses or pocket knife constantly & started blaming me. He started driving very slowly and became obsessed with organizing the trash. Still I didn't connect the dots. One day about 3 years ago, were were at my daughter's house and were talking about my son (her brother). He looked confused and asked me what was his relationship to "her" and pointed to my daughter. (He's their step dad). He also started not being able to think of words and said to me "help me out here" and I had no idea what he was talking about. He could no longer tell time on an analog watch. He said the watch "wasn't working" The reason I noticed these things was because we were no longer traveling in our RV and were together all the time due to COVID. The VA did the 3 hour Neuro-Psyche cognitive test and called me and said he could no longer drive a car. He had visuospatial issues and couldn't tell time, space & distance (hence the slow driving & hitting curbs). So please ask them to refer him to a Neuro Psychologist to have the 3 hour test and speak to them yourself after the test. Now he can't remember the names of his grandchildren & couldn't remember his deceased daughter's name. He can no longer use the phone or stay alone. He can't recognize certain foods. I can't get him to shower. He has a meltdown when he tries to do his meds. Please read the book "The 36 Hour Day" A nurse recommended it and it helped me understand and gave tips on what to expect. Please keep us posted.

M1

Stacey, agree with all the others that an attorney needs to be high on your list, and it should be a certified elder law attorney (cela) who can help with powers of attorney, wills, applying for disability, and financial planning to preserve your assets and plan ahead for institutional care should he need it in the future. These things need to be done while he is still competent to sign, and it will help you feel a bit more in control. Since he is still working, you need to move quickly on the disability piece so that he doesn't get fired and lose access to any retirement benefits to which he may be entitled. As you are doing this, you will need to update your own documents also since he should not serve as your power of attorney or executor. Sad i know, but important.

Read a lot of threads and you will learn a lot. This forum is a lifeline for a lot of us here.

Joe C.

Stacey, Welcome but sorry you needed to seek out our community. I echo all of what others said above but strongly suggest that you find CELA to handle your legal matters. You need someone who specializes in elder law issues not the firm that does wills & trust as a sideline. I interviewed 5 attorneys before picking on and some were offering standard will/trust packages that would not have met my needs as this journey progresses. I also recommend seeking out an local caregiver support group, they are a great resource for finding what help might be available in your area. You can search for support groups on the ALZ. Assoc. main page. I wish you the best.

Ed1937

Stacey, you found a great place to get help and understanding. I'm sorry you need it, but to make things a little easier, learn about the disease. The 36 hour day is recognized as one of the best books, as mentioned above. I also firmly agree about the CELA. You don't need a lawyer who handles a lot of different things, but one who specializes. A CELA will have all the knowledge of how to handle things best for you. And they will be up to date on changing laws in your state.

Here is an excellent link to an article on understanding dementia. https://www.smashwords.com/extreader/read/210580/1/understanding-the-dementia-experience#hlangandcommun