Carrie's Diagnosis Story: From Darkness to Acceptance

In this interview, community member, Carrie, shares her experience being diagnosed with Alzheimer's, coping with her new diagnosis, support, and advice for others diagnosed with this disease.

Before my diagnosis, I was a college professor teaching disability studies to medical college residents. Yes, I miss my work. I have 5 children, 10 grandchildren, a perfect husband, Bill, and 2 horrible dogs, who are with me all of the time.

I was diagnosed with MS in February of 2003 and have been with the same neurologist since that time. In July 2023, I mentioned that I could not remember Our Father prayer to him, something I have known since I was 3 years old. I told him I just couldn't remember it, and it was funny - I had the hardest time trying to find my way to his office today. He immediately ordered an MRI with contrast and a PET scan, which, due to MS, I just thought, "Okay, I'm having a flare-up." We had the scan the following weekend.

The results are in

On the way to my brother's lake house, I opened my healthcare portal and saw my test results. I started to scream, and I cried the rest of the way. We called my doctor and met with him on Tuesday. I begged to be put on the new infusion therapy for Alzheimer's, but I was already in stage 2 or 3. Sure, I was absent-minded, and maybe I had overspent a little, but stage 3? No way.

Then, I started to overthink and became very, very depressed. I started not eating, not speaking, not showering, not wanting to live. I reached out to the suicide hotline and talked to someone who really helped. Soon after, I went on a picnic with my family, and it was one of my best days. This helped to pivot my mindset.

I began to find my voice again. I got a home healthcare agency that helps with my speech, showers, and physical therapy. I schedule time with friends, family, my counselor, and my doctor routinely. I spend time with my husband, and at my doctor's advice, I no longer worry about remembering anything. I have a wall of pictures to keep my memories.

Coping with those who don't understand Alzheimer's

In my experience, people don't understand Alzheimer's disease at all, and they have very little patience for it. I find that as long as I am behaving myself, people are perfectly happy to help me, but if I get frustrated, then they cut me off. The best thing to do is have your own friends and schedule time with them, have a counselor so you can reason with someone, and find a support group like AlzheimersDisease.net, so you know you are not alone.

We can be taken advantage of or mistreated, so we need help. We need compassion, patience, love! We do need hugs! We do need the same things you do; we may not remember we do. If we are not your "thing," that's okay - just don't be mean to us; let someone else take care of us.

I had a really bad situation with an agency housekeeper who was mistreating me and my dogs, but it was hard for me to explain to my husband. I finally had to document when she was here and get one of my friends involved to advocate for me. We fired her and got our trusted housekeeper back, but I needed my friends to help me.

Finding comfort in connection and legacy

I feel most seen when I can share on this site. That's when I can really be myself, and I don't have to sit and be good, which I love. However, it can be very long and boring, so I get to play on my phone, which is nice. Public outings are horrible for me. They can be confusing.

I'm constantly buying for my grandchildren because I don't want them to forget who I am, but it's okay because you raised their mom or dad and did a great job doing that. You don't have to worry about your grandchildren because their parents will tell them about you.

My advice to others living with Alzheimer's

I have an incredible counselor. She has an extremely intense resume as she worked with our service men and women who suffered from PTSD. She has worked in our community to open shelters for homeless veterans. I was fortunate enough to be seeing her before being diagnosed with Alzheimer's, and so it has been a Godsend for her to treat me for the depression associated with the disease.

I think when grief criteria were created, they left out the first real stage, which isn't denial - it's fear. I was really paralyzed with fear for 6 months. My counselor helped me to move out of that stage and slowly go into the other stages of grief. I would not have gotten to acceptance without her, my faith, my friends, your website, and my family.

Fighting this disease like any other

I want people to know that if you are newly diagnosed with Alzheimer's and you are in stage one, you should fight for the infusion drugs with everything that you have in you. They are making real breakthroughs each day. Fight for yourself like you have cancer!

If you are in stage 2 or 3 like me, get support. Fight your insurance company for in-home care. We had to fight and have to fight every 8 weeks to continue our services. I don't believe our adult children should have to be my caregivers; it's too much stress on our relationship. Plus, I love my staff. They are professional, loving, and trustworthy. They understand my disease, and they don't take it personally.

Financial planners are your best friends to help support your needs during the long haul. You planned a different type of retirement, so they will help you get through this type of retirement. Lean on your God and your church. Our priest encourages us and has a special place for me to sit where I am not crowded.

Do not keep your disease secret. We sent a letter to our entire condo association. What if I get lost with the dogs? Well, friendly neighbors will guide me home. Friends schedule time with me, and we keep it to one hour. I don't ever try to remember anything about anything - ever! Who cares who that is or what I had for lunch? I have opinions about topics, and I share interesting and very dull things.

My reality living with Alzheimer's

The good news is I don't always cry like I used to. I guess it was just a sadness for the loss of myself, or my counselor said the death of my ego. I don't remember why I cried so much; I am so happy now. So, if you are very sad, remember that you will forget that you were sad - that's Alzheimer's humor.

I appreciate being allowed to share any thoughts I have about the disease of Alzheimer's and the diabolical impact it has on the entire family. Make no mistake - it has robbed me of all dignity and all energy my husband ever had taken everything from us. It has destroyed our lives in every way I ever predicted and feared, and maybe even worse. However, somehow, we have managed to find love and happiness together.