In November 2018, my family physician, Travis Abbott, who had known me for many years, referred me for a cognitive impairment screening. It was very helpful that Dorsey accompanied me to that screening. It was helpful for her to see what happened and for her to ask questions that I did not think of. I clearly had some areas that were not so good, but I was not formally diagnosed with Mild Cognitive Impairment until January 2020.
Since then, I have told family and many friends. It has seemed much better to tell people rather than have them wonder what is up. I have noticed a gradual worsening of my memory loss since 2020. I take care to write notes for myself and rely on the calendar. Dorsey kindly writes her schedule for me each day. I still cook and play cards – Bridge with Dorsey and two friends (on-line during the pandemic) and Gin Rummy with Dorsey. We have kept a running score in our Gin Rummy games since the start of the pandemic. We play each game until one person hits 500 points. Currently, I am ahead 66,650 to 64,090! I do food shopping, laundry, and most of the cleaning. (Although, we do also have wonderful professional cleaners who come for two or three hours once a month.) Driving has not yet been a problem, although before I go somewhere by myself, I first trace a map in my head. It helps that I have driven around Seattle for almost sixty years!
I have now had a formal diagnosis of Alzheimer’s Disease. My mother lived many years with dementia, and I hate the thought that I will probably go down that path. She died at 96, and I have a healthy body like hers. A body without a brain is nothing to which I look forward. It is hard to feel like a burden rather than an asset to others. I have decided not to take any more positions in our Quaker meeting.
My family has been very supportive. I am blessed that they all live within an hour’s drive from my home, except for my youngest granddaughter, who lives in Northern Oregon where she is working on a PhD in Physical Therapy. She is getting married in Walla Walla this July, and we are all attending. My oldest granddaughter is a NICU nurse and has given us our first great-grandchild. My oldest child is a female, as is my oldest granddaughter, and my first great-grand. I like to talk about our matriarchal line.
I am sure I will continue to be cared for by Dorsey, family members, University Meeting, other Friends, and friends in our neighborhood and beyond. If you have questions, feel free to ask me.
2017: I’m not sure what helped me realize Ann was having memory lapses. For months, I had been getting upset with her over her failures to remember things I had told her. It took me those months to realize what was really happening. She was losing cognitive function, and I was losing her. The distress that had gotten activated in me was a very old pain – the pain of not being heard, of not feeling important. My reactivity took over, and I couldn’t recognize what was happening to Ann. I could only feel what was happening to me. This was the beginning of Ann’s journey with Mild Cognitive Impairment (MCI), and the real beginning of my worry and grief about losing her. I was lonely with the grief and my secret about this incredible woman. I needed more support, and so I told one friend about Ann’s memory problems. Ann was not telling anyone.
2018: I was diagnosed with breast cancer in April, then had surgery (actually, three surgeries) and radiation treatment through the end of August. Ann took incredibly good care of me, and all my awareness and upset about her memory lapses went onto the back burner. There was so much grief in our world that year. Not only did I have cancer, but other family members did too. Ann’s memory struggle wasn’t at the top of the worry list. Ann’s first cognitive testing at the end of the year indicated that she was not functionally impaired and that she did not need treatment.
2019-2022: We traveled to France and England in the fall of 2019, and I don’t remember Ann’s having problems. We did incredibly well during the worst of COVID and agree that we were blessed to have that time together. We maintained good contact with neighbors and with women from our Quaker meeting via online happy hours. Ann and I started our COVID-19 Challenge Gin Rummy competition and our weekly Bridge games with friends. At the same time, I thought I was noticing that Ann’s memory in general was slowly getting worse.
In early 2020, a neuropsychologist at Kaiser Permanente diagnosed Ann with MCI, stressing the “M,” that is, stressing the “mild” aspect of the diagnosis. She hypothesized that because Ann started at such a high level of functioning, her decline might be noticeable to us, but her level of impairment wasn’t functionally all that bad.
Ann has received cognitive testing yearly since then, and the 2022 results showed more decline. Dr. Wolfe said she was holding Alzheimer’s as a likely possibility. The testing is an objective measure of the drip, drip, drip of our loss. For Ann, at this stage, the loss is mainly of her memory. For me, the loss means losing some of her, and it means fear about the future. Ann says she is angry rather than scared – at this point!
By the fall of 2021, Ann would sometimes ask me the same question three times within a couple of hours. I began to tell others about Ann’s MCI. It had gotten to the point that, when friends asked how I was doing, I felt like I was lying if I said nothing about Ann’s diagnosis. I both hated that feeling and also wanted my friends to help me emotionally. Somewhere in here, I began telling my healthcare providers about Ann’s diagnosis so they would understand why I was so stressed. This sharing has helped me feel a little more accompanied as I navigate this new world.
Ann gradually moved to the decision to tell our family; we wanted our kids and grandkids to be able to spend time with her while her core self was still functioning. Every time we tell someone, I am relieved that now we can talk with them truthfully when they ask us how we are. The downside of “coming out” about this is it makes this journey more tangible and painful as we shine a light on it.
Somewhere in here, four of us who have spouses with memory problems, all from University Meeting, started getting together every month for mutual support. We share lunch and talk about how we feel and how things are going We even share names of lawyers and talk about the legal work that’s appropriate for the anticipated future. This is the one place we don’t have to explain how hard our lives are or how lovely it is to have wonderful moments with our partners. We laugh and cry and keep each other company.
2023: Anyone who knows Ann knows how competent she has always been. She has been wracked by the loss of competence, and I am wracked watching her pain. There is nothing I can do to make her dementia go away. I hate it that I get cranky when I’ve told her something several times and she asks again, or when I’m tired, or scared about the future. I have apologized the next morning quite a few times, and she always says she doesn’t remember what I’m apologizing about. I laugh and say I shouldn’t have said anything. Sometimes we do find humor, thank goodness.
I have been worried for a long while that I am not organized enough to take care of work, Ann, me, the house, the dog. Ann tells me how awful it feels not to be competent. Ironically, because I’m trying so hard to be more organized, I sometimes do things that make Ann believe I think of her as less competent than I know she really is. One day, I retyped her list of computer passwords; the original list was full of cross-outs and rewrites. I thought I would help by retyping the list.
Ann was very upset about this, although it took her a long time to tell me so. She assumed I thought she was not competent enough to redo the list herself – her list. She was upset, and when she finally told me, I felt awful. This time-consuming “gift” I had given was not only unwanted, it felt to Ann like a slap in the face. When we finally talked about it and hugged, I told her how scared I am that I’m not able to do what she needs – and how frustrated I am that too often I do things she doesn’t need. I keep thinking I’ve learned this lesson, but then, I find I need to learn it again. And that lesson? As long as Ann can think and as long as she knows what she wants, don’t do things for her without asking. Got it – I hope!
I have become less and less reactive to Ann’s forgetting things. My therapist says he notices that I have been working on patience. My hope is that, if Ann gets worse, as is expected, I will be more patient. I’ll be grateful for our time together and not so worried about organizing our life. She has taken care of me for years. I hope I can do as well for her. ~~~
Ann Stever has been a member of University Friends Meeting in Seattle (NPYM) since 1965. She has clerked the meeting and many of its committees, and has served in many leadership roles for American Friends Service Committee and Friends World Committee for Consultation. She has three adult children, five grandchildren, and one great-grand.
Dorsey Green is a convinced Friend, who joined University Friends Meeting in the mid-1980s. She has been the clerk of her monthly meeting, North Pacific Yearly Meeting, and the Friends Committee on National Legislation. She is a psychologist in private practice, as well as a wife, sister, mother, and grandmother. She is blessed to have many good friends.