Dementia May Change Your Life, but It Doesn’t Have to Take Away Its Joy

Interview with Sharon Lukert, Author of “Until My Memory Fails Me”

Mrs. Luckert, thank you so much for taking the time to speak with us today. Maybe we could start with a few words about our organization. Our association is called Alzheimer Bulgaria. It was established in 2003, so we've been around for over 20 years now, and it is a patients' organization. It was founded by family members of people with dementia and Alzheimer's disease. We offer different services for people with dementia and Alzheimer's disease, such as support groups, including support groups for family members. Overall, our mission is to stand up for the rights of people with dementia and for older adults in general.

This is something that we have been working on for a very long time, and it remains our main focus.

I'm so glad that your association exists, because I know that here the Alzheimer's Association has been a big part of education for me and support groups that I attend regularly. It's a great organization.

That's wonderful to hear. So, the main topic of our conversation today will be about you and the book that you have published, which is being published in Bulgarian as well. You speak very candidly in your book about your experience with the diagnosis. Maybe we can start with that. What were the biggest challenges you faced in coming to terms with the diagnosis?

Going back to even being diagnosed, I started noticing some changes in 2019, and I didn’t actually receive the diagnosis of mild cognitive impairment until 2021. At first, my doctor thought it was just stress, and I think that happens for people a lot. When I got the diagnosis in 2021, I didn’t even know what mild cognitive impairment was, even though I’d been in healthcare for more than 40 years. I had never really heard that term before.

There was a lot of fear of the unknown. I was a little stunned, a little shocked, which took a couple of months to get through. One of the challenges for me was the uncertainty of knowing how quickly things would change, and whether I would even develop dementia or not. It wasn’t clear at that point, because for some people with MCI, it’s a stable situation or even one that can be reversed. But for me, that hasn’t been the case. I just had the blood biomarker that was approved in our country last March, and it turns out it was positive – my MCI is due to Alzheimer’s. So I finally have a full diagnosis, many years later.

So you would say that uncertainty was the most difficult thing to deal with?

Yes, the uncertainty and the fear. Even though I had worked with people with dementia before, when I got diagnosed myself, I realized that thinking of myself having dementia brought up a lot of stereotypes. Was I going to turn into a mean person? Was I going to have behavioral issues? Was I going to forget everybody that I love? All those concerns came up, and I needed to deal with my own personal bias about having this disease.

I feel like that is something many of our members face when they first receive their diagnosis. So would you say there were misconceptions you yourself believed about MCI before being diagnosed?

Yes. I think the biggest misconception was thinking that it was a very linear thing – that you either had normal aging, MCI, or dementia – and not realizing how inconsistent the changes can be. One of the difficult things, even since the diagnosis and even now, is the inconsistency of change. It’s very slow, and then all of a sudden something happens, and I suddenly can’t do something I was able to do before. And yet maybe the next day I can.

So one of my misconceptions was the either/or thinking – you either have this or you have that – and it’s not that simple, as I’m sure anyone going through this process realizes.

The unpredictability of each day – that is something you mention in your book as well, about good and bad days, and about learning how to plan around that. It’s a very important aspect of the diagnosis. You also mentioned earlier the people around you, communicating with them and talking to them about this. How do you feel your relationships with your family and friends changed?

It’s been interesting, because I have been very open about it, and I know that’s a personal choice. Not everyone is, and not everyone has insight into what’s going on if they’re diagnosed when they already have dementia, as opposed to earlier on. Most people have been accepting, but I find that many people still have misconceptions. Even my good friends would say, “But you don’t sound like you have dementia.” And I’d say, “Well, I don’t have dementia.”

So in most of my relationships, I have to do a lot of educating people about what is actually happening. I wrote the book back in 2020 and finished it in 2023, and now it’s another three years down the road for me. As things continue to progress slowly, but definitely with some changes, communication with my husband has become more and more important, because he can’t always tell from the outside when I’m having a bad day.

I’ve been seeing a social worker to help with that, and she suggested we come up with some code words. So when I have a bad day and feel like my brain just isn’t working, I call it an “Amy day,” short for amyloid. It’s a friendly name. I know some people use not‑so‑friendly names that I won’t repeat here, but even though it’s difficult, I still want to have a friendly relationship with this disease, because it’s a part of me at this point.

Another thing that changed early on for me was that I started having spatial issues, and because of that, I needed to give up driving. Many people don’t need to give it up right away, but I had a couple of near misses, and I decided it was best for everyone if I stopped driving. I’ve lost a certain level of independence that way, and I’ve had to rely on friends. A number of them have become my little group of people I can call whenever I need a ride.

That has actually been very beneficial, because during those rides we become closer. I spend more one‑on‑one time with certain people, I get to know them better, and they get to know me better. So that has been a positive, even though I still miss driving. It’s such a big part of our culture, but I know I’m not going back to it.

I’m sure it is a very big change, and as you mentioned, it’s a big part of independence as an individual. But it is very nice to hear that it has had such a community‑building aspect – reaching out to your friends and your circle of family and friends, and getting closer to them. That is a wonderful thing to hear. What advice would you give to someone who has recently been diagnosed with MCI or is concerned about their cognition and changes to it?

If someone is concerned about their cognition, I would really encourage them to talk to their doctor. That’s the main place to start and then see where things go. If you’ve just been diagnosed with MCI or dementia, it can be an overwhelming diagnosis, and I think it’s very natural to feel shocked and scared at first. But it’s important to recognize that there is a lot of support available, and that it isn’t the end of a good life. That’s one of the most important things.

People often feel like they’re going to suddenly lose themselves – I know that’s how I felt – and that’s a very dire feeling. Many people get depressed or struggle with denial because it’s a difficult diagnosis. But at the same time, as I mentioned with driving, yes, there are challenges, but there can be gifts within those challenges too.

I guess I’m a glass‑half‑full kind of person, but I think that perspective is important. And it’s important to know that the process is slow. You do have time, and that’s another gift of having an MCI diagnosis. You have time to adjust – emotionally, in your relationships, and also practically: getting finances and legal issues in order, finding the support you need, educating yourself. All of these things can really help support you through the process.

I also really encourage people to get involved, especially in support groups. Talking to people who are going through the same thing is incredibly supportive. Hearing others laugh, joke, and share tips about how to deal with different issues is a delight. And you find a lot of new friends.

That sounds wonderful. I think socialization is a very important aspect of staying part of the community and staying active.

Totally.

In your book, you speak very openly about your relationships, and you mentioned earlier that you had to do a lot of clarifying with your family and friends about what this diagnosis entails. Is there any type of support that you think spouses, children, grandchildren, or friends of people with MCI would need to navigate this challenge more smoothly?

Absolutely. And I’m sure you’re aware of this too, being part of the Alzheimer’s Association in Bulgaria – the Alzheimer’s Association is a very good place to start when looking for support. My husband read a book about caregiving very early on, and it emphasized finding your support group early in the process. Don’t wait.

Often the support caregiver – and my husband Frank and I have talked about this – will say, “Well, I don’t have to do much for you now. I don’t really feel like I’m a caregiver.” And I say, “Yes, but now is the time to develop that circle of help and support,” because things are changing, and we know they will get worse at some point, whether soon or five years from now. Either way, having that support is really important.

For young children, there are quite a few books now about “grandma having Alzheimer’s,” which I think can help normalize it. Speaking to children depending on their age, and not hiding it from them so they’re not wondering what’s going on, can be very helpful. Speaking to them in an age‑appropriate way makes a big difference.

One surprise area of support that I found was actually on YouTube. There are several people who are neuropsychologists and gerontologists who post short five‑minute talks on particular issues someone might be facing, such as sundowning for people with dementia. My mom had dementia and she passed away in January, and I found those YouTube videos incredibly helpful. They helped me understand what was happening when she had hallucinations and how to respond. And because they’re short, I could watch them for just a few minutes and get exactly the information I needed. So at least here in the U.S., that has been an additional source of support that I wasn’t aware of until recently.

First of all, my condolences. It’s a very recent loss, so yes, my condolences for your mother. And thank you for sharing such accessible resources – as you said, five‑minute videos that anyone can easily identify with and use. And also the matter of speaking to children and grandchildren – I thought that was a very important point, because often it’s seen as protecting the children by keeping the information from them. But the unknown is often scarier than actually having an idea of what’s going on, as you mentioned, in an age‑appropriate way, of course. Thank you for speaking about these very important aspects.

Something we were looking forward to discussing with you as well was your experience as a spiritual counselor. I’m not sure if that’s the term in English, because we were reading the book in Bulgarian. That type of support is practically nonexistent in our healthcare system. So we wanted to ask you about that and what its role in supporting people with MCI and their families could be.

Here in the United States, that’s called a chaplain, similar to a pastor. I’ll describe a little bit about the role of a chaplain in general. A chaplain is someone who has had some theological training of some sort. It doesn’t have to be tied to any particular religion – I myself am Buddhist, and most people in this country are Christian. The idea is that you have your own faith foundation, but you work with people according to whatever their faith is. I’m there to support someone else.

In hospice in particular, a chaplain is seen as an integral part of the team. There’s the nurse, the social worker, the doctor, and the chaplain, who supports the person through the dying process and supports the family in whatever way is appropriate for them. When I talk about support, it’s both spiritual and emotional support, and it can be whatever the person relates to.

Here in the Midwest, I live by the Mississippi River, and the river is very important to many people. So whether they have a specific religion or not, their spirituality may be connected to the river or to fishing – something that gives them joy and a sense of meaning and purpose. As chaplains, that’s what we look for: what gives you meaning and purpose. It doesn’t have to be “I’m Catholic” or “I’m Episcopalian.” It can be whatever is personally meaningful to you.

Of course, religion can also be very important. I often found that even with people with dementia, if they were Catholic or Episcopalian and I started reciting the Lord’s Prayer, they would recite it with me because it’s so deeply ingrained that they don’t lose it. It can give them a connection to something important to them.

I once had a client who was dying of Alzheimer’s. She couldn’t speak anymore, but her family told me the Bible was very important to her. I was reading the 23rd Psalm to her, and tears just started streaming down her face. I don’t know exactly what those tears meant, because she couldn’t speak at that point, but I could tell it touched her deeply. That’s one of the ways chaplains work here, and the same is true in hospitals. I worked in a hospital for about 13 years, and I also trained chaplains. There is specific training chaplains go through because it’s very emotional work. You have to have worked through your own concerns and your own emotional responses in order to be able to support not only the patient, but the family.

Most of the time we were called when a family was in crisis. Every family is different, with its own dynamics, and being able to enter into that family unit and see what might be helpful is a skill you really need to train for. In the hospital where I worked, our doctors and nurses became very reliant on chaplains to care for the family, especially in a crisis, while they were very busy caring for the patient medically. So that gives you a few ideas.

One more thing I’d like to mention: for my mother, whom I mentioned earlier, the two things that really gave her a sense of connection and purpose were music – she was musical her whole life – and a small photo of one of my Tibetan teachers, Pema Chödrön. My mom enjoyed reading her books, and she kept this small photo beside her. Anytime I saw her, she would point to the picture and say, “Pema’s with me.” Even near the end, when she wasn’t sure where she was – she thought she was in the wrong room – I held up the picture and she said, “Oh, there’s Pema.” And I said, “Yes, Pema’s here. This must be your room, because otherwise Pema wouldn’t be here.” She took the picture, calmed down, got into bed, and rested.

Knowing what those things are can be so helpful – whether you have a spiritual counselor or not – having someone who knows you well enough to know what is important to you as things change.

Yes, I believe that’s a very important point, as you mentioned. And that is something we also speak about when we do workshops for people who may work with individuals with dementia in the future. Sometimes it’s not about what the person is able to say, but about the emotional response. That is something that leaves a lasting impact. And that can be through music, or as you mentioned, a photograph, or religion. It can be such an important part of a person’s life and being that it can trigger a response, and it’s not about what they can express through words.

You spoke about chaplains in the healthcare system. Are there other forms of support that you believe are important for people with cognitive impairments?

Support groups are incredibly important – we’ve mentioned them already, but I think it’s worth stressing again. Being able to speak with your peers makes a huge difference. I’m not sure what it’s like in your country, but here they’re just beginning to create more support groups specifically for people with MCI and early dementia, rather than only for those further along.

We just started one in person in the city where I live. At the first meeting there were six of us, and now more than fourteen people have signed up. I think part of the reason is that people are receiving earlier diagnoses than in the past. Talking to your peers is so important.

Staying as active as you can in whatever brings you joy – whether that’s crocheting, reading books, watching funny movies – doesn’t matter what it is. Keeping those positive habits can really support people now and into the future.

Creating circles of help is also essential. I mentioned the friends I can call when I need something, and that may change as things progress. I might need hired help at some point. But knowing that your friends and family are around, that you can call on them when you need to – not only for yourself but for your family – is very important. I keep encouraging my husband to maintain his friendships and support network as well.

And finally, encouraging independence as much as possible, and looking for those moments of joy. Even when things are difficult and challenging, there can still be little moments when something sparks a laugh or a smile.

Those are very important points about socialization and staying active in the ways that are still possible for each person individually. One final question, perhaps: what do you hope readers will learn from or take away from your story – both those living with MCI and their families?

I think that a quality of life is still available throughout. It’s going to be different than it used to be, but that doesn’t mean there can’t be love or happiness. It may come in little snippets instead of a full holiday day, but it’s still there. I think that’s really important – that there can be hope.

I use this phrase a lot, but there are gifts within the challenges. Often when we think of dementia and MCI, we think only of the challenges. Being able to see the gifts too is something I hope people can take away from the book.

That is a very important point, and I think it’s a very good outlook to have. As you mentioned, many people see only the negatives, and that is mostly what people know about the diagnosis itself – MCI, or even dementia and Alzheimer’s. They only know about the negative effects. It’s very important to focus on what is still good, what the little gifts are, as you said, in everyday life. That’s a wonderful point to make.

And thank you for sharing the ways you manage to do that in your everyday life – for example, the approach with the code words. I hadn’t heard of that before, but I think it’s a very good way to deal with difficult days or moments.

I have a funny story about that. We just had the memorial service about a month ago for my mom. It was a very stressful time, and we had family visiting, so the next day I was pretty wiped out. When I got up in the morning, Frank asked me, “How are you feeling?” I said, “Like a Mack truck just hit me.” He said, “It’s a Mack truck day.” (laughs) I said, “Yeah.”

So the next day he asked, “Is it a Mack truck day?” I said, “No, it’s a small pickup now.” (laughs) We try to approach it with a sense of humor, and it helps. It really helps to work with it.

Interview by Maya Marinova, The Alzheimer Bulgaria Association