New to both parents with cognitive decline - sole caregiver

0Athena0

I really don’t know where to start. Maybe with my father. Around 2018 (age 63) he said he was diagnosed with organic dementia by a VA specialist. He suffers from confusion at times, word finding issues, incorrect word substitution, anger/lashing out and more. He can function normally most days. He is in denial of his cognitive decline. He is secretive about whether he is being treated some days and other days he will mention he takes memory supplements and a prescription (no idea). Mom had the sharpest memory of anyone (of all ages) that I had ever known. She never had to write anything down and would remind everyone of everything. She always reminded dad to take his meds and things he needed to do throughout the day.

Fast forward to 2021 - noticed mom getting frustrated easily. She started screaming, shouting and banging things when she had difficulty doing something like opening a can or swiping on her smart phone. We noticed some changes but around this time she is 80 years old and we brushed it off as aging. At this time I was dealing with an illness and was not able to observe and help my parents as I use to.

2022 - Mom is diagnosed with a large brain tumor. At 81 years old she had brain surgery to remove the atypical meningioma. There were changes in her behavior immediately after surgery. She had seizures and was put on larger dose of Keppra anti-seizure meds they initially started her on before surgery. She ended up having edema, pulmonary embolisms, infection..you name it. She pulled through it all. I took care of her and my father did what he could when he could. Most days he took off because he couldn’t handle the stress and her lashing out. Which in turn had me worried about him as well.

2023 - Mom’s changes become more apparent or have progressed more. The “bad days” are happening more and more. She put off seeing a neurologist/neuropsychologist for about a year now. Finally, was able to get her primary doctor to get a referral but still waiting on that. I know we need a diagnosis so that we can make a plan and implement that plan, right?

I have no support from siblings. I recently had to block my sister on mom’s phone at her request because she would incessantly call to harass mom either directly or through our father. She’s still able to reach Dad and myself but I had to make that very hard decision.

The only family I have willing are in Greece. It is just me. No one I know is or has gone through this. I am 45 years old. I have taken on trying to care for my parents as they do not have anyone else.

Right now I am waiting on mom to see a specialist for diagnosis. From there I think establishing a plan with her healthcare providers once we know what is happening for sure.

My father only recently allowed me to look at certain medical results of his after he had a colon cancer scare. He also has bad days.

At this point I feel like I’m trying to fish with my bare hands trying to catch one or both on a good day so that I can reason with them. It’s hard because I have an analytical background and I try to reason a lot. I recently started reading the 36 hour day book. I realize reasoning is a bad idea when they are in a confused and or frustrated state. I think reasoning and trying to solve problems is not only a big part of who I am but also may be a coping mechanism. I’m trying hard to learn to redirect, walk away.

How do you force a smile, redirect, and be supportive when they take off walking in the rain for 2 miles and you’re desperately trying to make sure they are safe. I have anxiety and ptsd that I manage. Anyone else in a similar position?

Are there online caregiver for cognitive declining (alz/dem) loved ones chat room or virtual meetings. Anything that is in real time, unlike posting in a forum and waiting for responses?

If you read this long post, I’m sorry but thank you for doing so. Any input of any kind is much appreciated. I have the utmost care and respect for people caring for others and or dealing with this disease/disorder.

JeriLynn66

Others will chime in but for an immediate connection you can call the 24 hour ALZ Hotline and ask for a Care Consultant.. trained and licensed Social Workers who can listen and assist you with problem solving/finding resources. The number is 800.272-3900.

M1

Welcome. You need to get power of attorney for both of them. For healthcare and finances. That will give you the authority to act.

Anonymousjpl123

Yes the most important thing, right now, is making sure you have power of attorney for both of them. It’s relatively straightforward and if you don’t have it already, I highly recommend that be the first priority. You can just say you’re doing your own paperwork, taxes, etc and that is part of it.

The next step is starting to figure out their finances, and what kind of help they will need. It doesn’t all need to get done at once, and you don’t have to do everything perfectly. But getting them lined up with regular health care is key. If you ever worry about their safety - like they walk 2 miles in the rain - never be afraid to call 911. Dementia is a “safety first” kind of diagnosis, so you should be prepared. Also not sure where you are located, but if you find your local Alzheimer’s association chapter they should have online and in person support groups.

I’m so sorry you have to deal with this, but there are resources! The hotline is also an amazing resource. I have called a few times in a pickle and they have always helped.