New Diagnosis

salsavive · August 9

Hi Everyone,

Yesterday we received a moderate ALZ diagnosis for my father. The diagnosis was a long time coming. He had received an ALZ diagnosis before the pandemic, but then he had some significant movement problems that led to a change to a movement disorder. However, then the movement disorder did not progress as expected and the doctor referred him to a specialist who works on movement and cognitive disorders. She was very definitive in the ALZ diagnosis. So now we are back to square one.

This is hitting me much harder than I expected. When there was a rare neurological disease, it felt like maybe there was a glimmer of hope or at least that his decline may not be so rapid since what he was originally diagnosed with was so rare it was difficult to have a prognosis. Now, the new doctor sees a very clear progression. We are probably between stages 4-5 (I would say closer to 5), and I am terrified of what’s to come.

I should also say that I am not his primary caregiver, my mother is, but her judgment is medium at best and she struggles with a significant mental health illness so I am also terribly concerned about her.

My anxiety is off the charts. Any advice for resources or things that helped you cope when this all started?

H1235 · August 9

Welcome! I would strongly recommend making sure legal matters are in order. An elder law attorney is best. If they will fight you on it just suggest it’s something that needs to be done because they are getting older vs bringing up dementia and any deficits. If your mom is struggling it would probably be best if you or a sibling are named DPOA for your dad. I would also recommend your mom do a dpoa. A living will is also a good idea, for both of them. A lawyer can also help advise you regarding Medicaid and protecting financial assets. Do you know what kind of shape their finances are in? Is you mom still able to manage finances? It would probably be a good idea to get involved so you know how things stand. Scammers can cause all kinds of problems and she is probably very vulnerable now. Dementia is expensive! I would start looking into your options for everything. Looking at things like… What does medicaid cover in your state? Will they qualify once they spend down? What kind of in home care services are available? How expensive is assisted living and is there a waiting list to get in? Can they afford assisted living? Are there things that need to be done around the house to make it safer for him? There is a lot to do, but you will get through it. This site is wonderful. So many knowledgeable people. It’s also a great place to vent frustrations. A local commission on aging may be able to point you in the direction of local resources. So sorry you have been forced to join us on this awful journey.

New Diagnosis

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