Working Through This New Diagnosis

MissyALZ

I am now 57 and was diagnosed officially earlier this year. The doctors had an idea a few years ago, but after suffering the first Covid in 2020, they were unable to tell what cognitive impairment from the virus compared to dementia due to Alzheimer's disease. I had a 3-hour cognitive eval, the doctors agreed to wait to see if things improved. Meanwhile, I had to resign from a 35-year legal career due to cognitive decline, slow brain processing.

I have always had ALZ in my genetic testing, I knew what side it is on. I just never imagined it would happen this soon. Thankful for the knowledge of my docs and the fact that they didn't give up. The PET scan was amazing to show what areas of the brain the plaques are in.

I will be starting Leqembi, I had to have the Watchman implanted to get off of blood thinners first. I have not yet been able to speak to anyone who is on it. I am curious about how it makes you feel, have you noticed any clarity compared to how you were feeling before? I will be sure to post after I start so I can give people a little insight.

Meanwhile, I love Pilates, I have exercised since I was a teenager. I love to volunteer, and we have fostered animals for years. I love scary movies, since I was a kid. I have a list of at least 50 things I need to accomplish in the house, but it depends on the day whether my brain will focus enough for me to complete tasks and how many tasks. This is not just forgetting why I walked into a room. This is more complex with the brain, but I am aware that it is happening. One of the kids bought me a book called A Question A Day. I am determined to get through it to give back to her before I'm unable to finish it.

Currently, what I am struggling with the most is telling anyone other than my family about the diagnosis. It was a lot to go to each of our children and tell them. I have not worked up to telling anyone else we know. As a matter of fact, I have been more distant from all of our friends. How did everyone else tell people what they are going through? Did you wait a while or tell people immediately?

Thank you!

JulietteBee

I am so sorry to hear of your diagnosis.

I do not have it, thankfully. However, my 83 year old parent does. I have disclosed the diagnosis to 2 of her siblings, 1 friend, and 2 of my friends. She has told no one and she would feel betrayed knowing that I have told anyone.

I've watched her decline over the past 3-4 years. As an RN, I diagnosed her myself and have been begging our pcp to test her. He kept "forgetting." He finally tested her in December 2024 and gave her an official diagnosis.

For what it is worth, I would suggest that you disclose your own health issue. Your children are going to need emotional support, at the very least. If no one knows, no one will be able to support them.

The same is true for you. Friends can not support you unless you disclose your struggles with them. There is no shame in having dementia. Start the conversation!

blacksparky

My DW has EOAD. She is 55 and was diagnosed at 53 with the doctors saying it probably started a few years before. Early on we told family and close friends about the diagnosis. Our thought here was maybe down the road we would get some support. Also it gave a chance to them to spend more time early while she was still fairly cognizant. We also told our neighbors . There are a couple of neighbors that have stepped up and help me quite a bit. My DW has progressed from stage 4 a year ago to late stage 5 and early stage 6. I’m glad more people knew earlier and had time to enjoy the person she was then because the person she is now isn’t what I want anybody to know.

MissyALZ

https://alzconnected.org/discussion/comment/246235#Comment_246235

Thank you for responding. Each of our children had life changing events happening in their lives, so I told each of them when the time was right for them. Telling them individually prevented me from being bombarded with questions and comments all at one time. Everything is overwhelming for me right now and it was already 6 months ago. My 2 lifelong best friends know also. I don't want people to treat me differently if they know. I believe once I start on the infusions and see how things are going, I may feel more willing to be open about the diagnosis.

MissyALZ

Thank you so much for responding. It has been 6 months and I still feel like it is an overwhelming diagnosis. I will wait until I start on the infusions and see how I am feeling, I may be more willing to share when my plan is in place. Hugs to you for being a caregiver to someone with Alzheimer's.