In 2013, I suffered a stroke at work and as a result of all the follow-up scans and tests I found out that I had Alzheimer’s. Through ongoing rehabilitation and monitoring of my stroke, the neurologist at the hospital realized there was something suspicious in an MRI of my brain so he sent me to a neuropsychologist for an evaluation.

Nearly two years after my stroke, I felt like I had made a good recovery, but was struggling to remember certain words and was having to put more thought into cooking. My husband, Ettore, had also noticed issues with repetitiveness, that I was forgetting recent conversations or having watched a television program, and that I was making more notes than usual. In speaking with the neuropsychologist, I also opened up about struggling to remember where things were located geographically, although I had never gotten lost outright.

The evaluation was a series of tests over the span of two days. When I went in for the results, it was obvious it was bad news. The neurologist had my husband and daughter sit to each side of me and asked that I sit in the middle. When he told me, I started crying and asked, “Are you sure?” The diagnosis came as a shock. 

My neurologist immediately enrolled me in clinical trials and I am on a combination of four medications. These immediate and experimental efforts seem to have been fruitful. My disease has not progressed as much as would have been expected in four years.

However, there are some noticeable changes. In the past four years, I’ve become more emotional and social situations have become anxiety provoking. I no longer travel by myself. I’m only willing to travel with my husband. Packing, itself, is an overwhelming task. Also, I recently decided to stop driving after seeing a yield sign and not understanding what that meant.

In the third year, I noticed I became more withdrawn. When you have Alzheimer’s, you start fading from life. I work hard to not withdraw completely. I try to keep in touch with my family and socialize as much as I feel comfortable with. My husband and I used to entertain often, but I find I can no longer cook huge meals. I can’t manage the same social schedule I once had, and to me it’s okay.

I choose to maintain my sense of humor and avoid negative thoughts as much as possible. What else can you do? I can think I won’t be around or lucid when my grandson graduates, or I can redirect my thinking to focus on what I will be around for. You have to accept the limitations and work with what you have.

I wish people understood Alzheimer’s is like other illnesses – you must adjust to the changes. So far there’s no cure, so for most people, Alzheimer’s feels like a death sentence. Your life, however, is not over just because you have Alzheimer’s. Live every day to the best, don’t just sit on the internet and cry because “he’s not the same person I married.” People should be allowed to cry, but then you need to adapt.

I accept the fact that I have Alzheimer’s, and I continue to fight its progression as much as I can. My loved ones are still struggling to come to terms. People deny it because when they talk to me they think, “You don’t have Alzheimer’s.” My attitude is: You better buckle up because we haven’t even hit the hard part.

I know how relentless Alzheimer’s is – I helped take care of my dad for the five years that he lived with Alzheimer’s before he died at the age of 76. Eventually, dad developed pneumonia, related to being bed bound which was related to Alzheimer’s. Dad was hospitalized and doctors mindlessly gave him antibiotics even though he was dying.

I don’t want to endure unnecessary or life-sustaining treatments at the end of my life. Although I’m Catholic, I don’t believe I should have to keep living no matter what. I strongly believe if someone is suffering and in pain, that they should have the right to decide what is acceptable and what is not. I have a DNR and have started having conversations with those closest to me so that they understand my wishes and can advocate for me when I can no longer do so for myself.

Healthcare providers are resistant to talking openly with their patients living with dementia. I wish doctors understood that we need to be educated on the stages of Alzheimer’s and told what to expect at each stage. I had to force my doctor to talk to me about what I can expect. Unfortunately, the patient and their caregivers have to assert themselves and tell the doctor what they want and need to know.

Information and resources for those impacted by dementia are woefully underdeveloped. There are walks for Alzheimer’s, but helpful materials are lacking. Once I got into it, I realized that there aren’t resources for what you should demand from your doctor and how to talk about your wishes. There’s so much guidance for those with cancer. Dementia is so prevalent, yet there’s still so much work to be done to help people like myself navigate the process through the end.

Resources for caregivers and those living with dementia:

Dementia Values & Priorities Tool

This tool walks individuals through the common stages of dementia and helps them to identify when, if ever, their goal for care may change from “do everything possible” to “allow for my natural death.” The tool allows users to create a Dementia Healthcare Directive to add to a standard advance directive, which empowers healthcare proxies to implement critical, informed decisions — guilt-free — on a patient’s behalf.

Dementia Decoder

This tool allows users to indicate the current status of their dementia diagnosis, specify what they hope to learn and accomplish from an upcoming clinical appointment, and customize that experience from a list of helpful questions. Responses can then be printed or emailed to a provider or family member to ensure that these high-stakes medical appointments allow for the important discussions that everybody in the room needs to be part of.