Preparation after Diagnosis

LimitedTime

Two days ago my PA confirmed I am in early stages of dementia. I've always been one to prepare in advance, but this is unchartered territory as you all know. Still any comments will be welcome.

1. Prior to the diagnosis, I had arranged and prepaid for my aqua cremation.
2. I am in the process of re-doing the advance directive because my partner has Lewy Body Dementia and Parkinson's and I am responsible for his everything. (Don't ask about his sister!) He was listed as the one to notify, so I have to change that.
3. I do not want to become like he is: bedridden and living in a fantasy world, often very scary. He is on hospice and they have been wonderful.
4. This may be unanswerable, but when do you know it's the right time to end your own life? I have read Final Exit and will prepare, but with dementia, what is the timeline? (And no judgment, please as we each get to believe what we wish and act on it.)

Iris L.

Welcome Limited Time. I am sorry you have been given a diagnosis of dementia. May I ask hiw this diagnosis was reached by the physician's assistant? Were tests done to rule out medical causes? Were your medications reviewed for cognitive side effects? Did you undergo extensive neurocognitive testing? Have you seen a neurologist who specializes in the dementias? I thought for several years that I had early Alzheimer's Disease, but an Amyvid PET scan determined that I do not have Alzheimer's Disease.

I'm sorry your partner has Lewy Body Dementia and Parkinson's Disease, and I am glad that he is receiving good hospice care.

This board recently underwent a change in the software and many years threads were discarded. There had been many thoughtful threads regarding what you are wondering about. I cannot replicate any of those discussions.

Be aware that not every person has the same journey with dementia. As you have noted, thoughtful planning and being proactive is a benefit. Please continue to post, peer support does help!

Iris

BadMoonRising

Hold on, there! I was in your shoes about 15 years ago. At that time, I was under an enormous amount of stress. I started losing words, etc. I had a two day neuropsych evaluation and was diagnosed with Amnestic Disorder, i.e. Mild Cognitive Impairment. The stress continued. Several years later, I had another neuropsych exam and an amyloid PET. MCI again, and a positive PET Scan. Damn! And yet, here I am!

I am unable to sleep well the night before a test, and I have not yet figured out how to conquer the pretesting anxiety. YOU have a partner who requires 24 hr dementia care. I cannot imagine a cognitively stable caregiver testing well while caring for a partner with dementia. I fully understand your desire to end it all, especially while witnessing the ugliness of dementia. BTDT. I had/have a plan, but here I am. If it brings you comfort, keep in mind, that plans can be modified as warranted.

Give yourself plenty of time to heal before making any major decisions. There is no do-over.

AlzWife2023

https://alzconnected.org/discussion/comment/203267#Comment_203267

@Iris L.

I’ve been wondering about my DHs diagnosis of Alzheimer’s and would line to get the PET scan. May I ask what diagnosis you got after they ruled out Alzheimer’s?

mkoscik

https://alzconnected.org/discussion/68651/preparation-after-diagnosis

It took 18 months for me to be diagnosed with Vascular Dementia. I took multiple "mini-mental" tests. Had CT Brain scan. MRI of brain. PET scan. Worked with a neurologist, who referred me to Byrds Lazheiner Clinic in Tampa. I then went through comprehensive evaluation by a professor of neuropathic disease and a 4 jour cognitive test , I think called MOCA. Results were sketchy and not totally conclusive, but due to my extreme change in work behavior abilities as a Project Manager, I was diagnosed with Mild Cognitive Impairment, MCI. It can be a very lengthy process to be correctly diagnosed, and to be treated correctly. Please get second opinions,always.

Iris L.

https://alzconnected.org/discussion/comment/204575#Comment_204575

AlzWife, my diagnosis remained cognitive impairment not otherwise specified. This means the CI is due to a disease process other than Alzheimer's or the other common dementias. In my case, the CI could be due to hypertension, systemic lupus, antiphospholipid syndrome or sleep apnea or combinations of the above. But I believe my neurologist is focusing on sleep apnea as a cause.

Iris

AlzWife2023

https://alzconnected.org/discussion/comment/204786#Comment_204786

@Iris L. thank you for replying. I wish you the best!