A Journal of Suzanne’s Journey with Dementia
Kept by George, for family and close friends
Summer 2024 - ?
I want to keep this journal so that I can pay attention to what is happening both to Suzanne and to me.
Some people ask what causes it. There are no clear, proven links to things like diet, smoking, alcohol, or exercise for most cases.
There are various types of dementia. The prominent behavioral and personality changes I have seen — public jealousy outbursts (“She is after you. That is the way women are”), rapid flipping obsessions (hormone pellets, moving to Clearwater), post-nap rages, disinhibition, and perseveration — are hallmark features of damage to the frontal lobes, especially the areas that control impulse control, judgment, empathy, and emotional regulation. Memory problems (like not knowing the state, date, or president) and functional issues (writing numbers, using the wrong utensil) can also appear as the disease progresses.
Here is the medical reality. The brain undergoes neurodegeneration — progressive death of nerve cells — primarily in the frontal lobes (behind the forehead) and often the temporal lobes (on the sides, near the ears).
Protein buildup and cell death: Abnormal proteins (most commonly tau or TDP-43, sometimes FUS) accumulate inside neurons. These proteins clump together, disrupting the cell's normal function, damaging its internal transport system, and eventually killing the neuron.
Brain shrinkage (atrophy): As more and more neurons die, the affected brain tissue shrinks. On an MRI, you would typically see noticeable atrophy in the frontal lobes (and often anterior temporal lobes). This shrinkage is visible in moderate stages and worsens over time.
Disrupted connections: The frontal lobes normally act like the brain's "CEO" — handling judgment, impulse control, emotional regulation, planning, social behavior, and decision-making. As cells die and connections break down, these executive functions fail.
This is a progressive, irreversible process at present — no current treatment stops the protein buildup or cell death, though medications and strategies can help manage symptoms and behavior.
Understanding this can make the behaviors feel less personal ("it's the disease, not her"). The good moments of connection and intimacy you still have occur because not every circuit is destroyed yet — emotional memory and some personality aspects can remain surprisingly preserved for a while.
Although we have talked about going to a neurologist, which is what our PCP has suggested, Suzanne has not wanted to go.
As of May 14, 2026, I am beginning to look for the legal documents I need, such as Power of Attorney.
In the following account, I want to keep the record, but I also want to incorporate the events into the context of Christian faith.
Summer 2024 — First Signs
Signs started in the summer of 2024. Suzanne began having trouble remembering the precise places she’d been. We turned it into a game of charades when she couldn’t recall names or locations. It was playful then, but looking back, it was the beginning.
Reflection: “Even to your old age I am he, and to gray hairs I will carry you. I have made, and I will bear; I will carry and will save.” — Isaiah 46:4, ESV
I didn’t know it then, but God was already carrying us into this.
Late 2024 — Memory Tests
By the end of 2024, it became more noticeable. She could not remember any of the simple three-word memory tests often given to older people. Names, places, words — they were slipping.
Reflection: “Do not cast me off in the time of old age; forsake me not when my strength is spent.” — Psalm 71:9, ESV
Late 2025 — Anger and Suspicion Emerge
By late 2025, more concerning behaviors emerged: sudden outbursts of anger, throwing objects — pencils, glasses, a calendar, even a Coke bottle. Strong suspicions began.
One memorable incident happened at the Cheesecake Factory. A friendly waitress smiled at me. After she walked away, Suzanne said loudly, “She is after you. That is the way women are.” Similar comments were made about Amanda, a woman who moved into our apartment complex whom we knew from Clearwater. Suzanne became convinced Amanda was pursuing me and brought it up repeatedly with suspicion and resentment.
Reflection: “A soft answer turns away wrath, but a harsh word stirs up anger.” — Proverbs 15:1, ESV
“For God gave us a spirit not of fear but of power and love and self-control.” — 2 Timothy 1:7, ESV
I’m learning not to argue with the fear. It isn’t about the waitress or Amanda — it’s the illness.
Ongoing - Good Moments Continue
Throughout this period, life goes on. I still have my physical fitness moments in the morning. I love to study and learn. Together, there are many sweet and meaningful moments. We still go out to eat with friends. We still go to the beach, even if not as much as I would like. We can still be passionate with each other. We still go to Dunedin and Trinity Farmer’s Market. There is always the pool. And of course, the weather is awesome during the winter months. We have our quiet evenings listening to news on YouTube, and then listen to some music concerts on YouTube as well: Rod Stewart, Celine Dion, BeeGees, Carly Simon, Neil Dimond.
Reflection: Every good gift and every perfect gift is from above, coming down from the Father of lights, with whom there is no variation or shadow due to change. — James 1:17
Ongoing — Sleep and Mood Swings
Her sleep pattern has changed dramatically. She now sleeps 10–12 hours or more per day, often in multiple long naps. On the personal side, this gives me plenty of time to read and study. She can sleep through anything, even horror and Syfy. She frequently wakes up from these naps in a negative or angry state. Out of general frustration with not being able to remember words or places, she can say sarcastically: “Thank you, God.” She can express the wish that she could die. Her emotions have become highly unstable — she can swing from pleasant and joking to furious or tearful within a short time. She has directed increasing anger toward me, sometimes with clenched fists, telling me that I don’t care about her or to “back off.” On one occasion, she gripped a shake glass so tightly I thought she might throw it.
Reflection: “Come to me, all who labor and are heavy laden, and I will give you rest.” — Matthew 11:28, ESV
“Let us not grow weary of doing good, for in due season we will reap, if we do not give up.” — Galatians 6:9, ESV
I pray for peace in her waking, and strength in my watching.
Ongoing — Shifting Repetitive Concerns
She has strong, shifting repetitive concerns. For months she was fixated on hormone pellets — first blaming them for making her legs “big,” then insisting she needed them back because stopping them made her legs weak. She has gone through multiple hairstylists and doctors, quickly becoming dissatisfied with each one.
Most recently, she became excited about moving back to the Clearwater area, closer to the beach and a favorite masseuse, only to flip back to wanting to stay, then flip again. These fixed beliefs can change direction in just a day or two.
Reflection: “Do not be anxious about anything, but in everything by prayer and supplication with thanksgiving let your requests be made known to God. And the peace of God, which surpasses all understanding, will guard your hearts and your minds in Christ Jesus.” — Philippians 4:6-7, ESV
Ongoing — Functional Decline
There have been clearer signs of functional decline.
One morning she stood in the kitchen trying to cut sausage and pulled out a spoon, then a fork, before finally realizing she needed a knife. Another time she tried to write down a 12:30 appointment but could only write the “1” before freezing, unable to remember the rest of the numbers.
She has also shown increasing difficulty following directions while driving on familiar roads. Once she became panicked and near tears when briefly separated from me. This might be a one-off because the traffic was unusually heavy due to an accident.
May 13, 2026: After a nap, could not remember how to write the correct day or the 2:30 pm appointment time on her calendar. She verbally called herself “stupid,” threw papers around, and cursed vociferously at doctors. This is a textbook example of the current stage: a good stretch with intimacy, followed by sudden post-nap functional failure and agitated outburst (self-directed anger + doctor cursing). The contrast between her “good self” and the post-nap confusion highlights the patchy, fluctuating nature of late moderate dementia.
Reflection: “God gives power to the faint, and to one who has no might God increases strength.” — Isaiah 40:29, ESV
When she can’t find the word, the number, or the way home, I ask God to be her strength.
Cognitive Fluctuation – May 13 vs May 14, 2026
On May 13, during an eye examination, Suzanne was unable to state what state she lives in, what day it was, or who the current president is. The doctors strongly recommended establishing Power of Attorney.
On May 14, when asked the same questions at home, she answered them correctly. This highlights the significant day-to-day (and even hour-to-hour) fluctuations common in her stage of dementia.
Ongoing — Moments of Self-Awareness
Suzanne still has moments of self-awareness and even humor. She has asked me, “Was I mean today?” She has said, “I need some doctor to fix my brain,” and once looked at me sadly while watching another man caring for his wife with dementia and said, “That could be you.” She can still joke, flirt, and have pleasant conversations on good days.
Reflection: “For I am sure that neither death nor life... nor anything else in all creation, will be able to separate us from the love of God in Christ Jesus our Lord.” — Romans 8:38-39, ESV
“There is a time for everything... a time to weep, and a time to laugh; a time to mourn, and a time to dance.” — Ecclesiastes 3:1, 4, ESV
These moments are grace. I write them down so I don’t forget.
Medical Notes — May, 2026
Medically, she is on levothyroxine, which doctors have reduced because her levels are too high. She also has liothyronine (T3), which she wants to increase against medical advice. She tried donepezil for memory once but had nightmares and refuses to take it again. She cycles between wanting hormone pellets and blaming them.
Ringing in her ears (tinnitus) has been one of her more consistent complaints. The ENT visit on May 11, 2026 ruled out any obvious structural problems, but confirmed hearing loss, particularly in the right ear. They still don’t have a clear explanation for the ringing. This is common at her age.
Reflection: “My flesh and my heart may fail, but God is the strength of my heart and my portion forever.” — Psalm 73:26, ESV
When medicine can’t fix it, God is still her portion. And mine.
Ongoing — “Legs Getting Big”
This has been one of her longest and most consistent repetitive concerns. She believes her legs have become noticeably thicker, huskier, or “big.” She primarily blames the hormone pellets. She has gone through multiple flips: “The pellets are making my legs fat” → wanted to stop them. After stopping: “My legs are big because I stopped the pellets” → wanted to restart them.
She often ties it to specific doctors, claiming they “did this to me.” She frequently compares current photos of her legs to older ones and insists they look bigger, even when others don’t see a difference. The complaint often comes with frustration, anger, or tears. It is one of her go-to topics when she wakes from naps or is in a negative mood.
Reflection: “You will keep in perfect peace those whose minds are steadfast, because they trust in you.” — Isaiah 26:3, ESV
Her mind can’t rest on this. I pray His peace guards her when mine can’t.
May 12, 2026 — Overall Assessment
Overall, Suzanne is in the later part of the moderate stage of dementia and showing signs of moving toward the severe stage. Her good days still exist, but the difficult behaviors — heavy sleeping, rapid mood swings, anger directed at me, and shifting repetitive concerns — are becoming more prominent.
Reflection: “I praise you, for I am fearfully and wonderfully made. Wonderful are your works; my soul knows it very well.” — Psalm 139:14, ESV
Even now. Even here. She is fearfully and wonderfully made. And so is the love we still share.
Reflection
Some who read this are people of prayer, and I invite you to do so. I hope this helps you to pray.
“There is a time to weep, and a time to laugh.” Ecclesiastes 3:4, ESV
We are in both times at once. And by God’s grace, by philosophy’s help, and by love’s stubborn habit, we are not alone in it.
I am not one to wonder why “this” happened to us. As Zen would put it, “this too is it.” Marcus Aurelius: “Accept the things to which fate binds you, and love the people with whom fate brings you together, but do so with all your heart.” It is easy to question God or to think that somehow life should be something other than it is. As for me, I tend to take life as it is. I do not pretend to know fully, and embrace that I know only in part. This is a chapter in two lives that have had many chapters. We do not know the final chapter.
“All conditioned things are impermanent.” Such is the Buddhist principle of Anicca. Thus, clinging to things as if they are permanent is a path to suffering. Moods will change, whether anger or sweetness. This means love itself must not cling to what was, but must willingly embrace what is now. Compassion understands that sometimes it is the disease speaking and acting. No one can control the disease or its progress, but I can control my response, which I hope is usually with gentleness.
Aristotle could write of human flourishing, by which he meant living well and acting with virtue as the direction of one’s life. He saw virtue as mean between two extremes. In this case, between self-sacrifice and abandonment is caring for self and for her.
“Therefore do not be anxious about tomorrow, for tomorrow will be anxious for itself. Sufficient for the day is its own trouble.” — Matthew 6:34, ESV
Jesus wasn’t talking about calendars. He was talking about today. One only has to carry this afternoon. Grace isn’t distributed in 4-year blocks. It’s daily bread. And as God said to Paul while at prayer, ‘My grace is sufficient for you.’ — II Corinthians 12:9, ESV.”
Expected Progression Over the Next 1–3+ Years
Remaining time in late moderate stage:
Typically, people spend 1–3 years total in the broader moderate/moderately severe range, with the later part (where she is now) often lasting 6–18 months before clearer severe-stage features dominate. Given her mix of preserved awareness and increasing functional/behavioral issues, a reasonable estimate is that she could remain in this late moderate phase for another 6–18 months (roughly through late 2026 to mid/late 2027), though it could stretch longer if she plateaus.
Transition to severe stage (late/severe dementia):
This is when full dependence on others for most or all daily activities occurs, communication becomes much more limited, and physical/mobility issues increase. Average duration of the severe stage is 1–2.5 years (sometimes shorter or longer).
Rough date estimates (these are not predictions, just typical ranges centered on her current trajectory):
Late 2026 – Mid 2027: More consistent help needed with dressing, bathing, meal prep, and toileting. Obsessions and mood swings may intensify or shift. Word-finding worsens significantly; she may repeat phrases or have longer periods of confusion. Driving (even as passenger in unfamiliar situations) becomes riskier. Increased fall or infection risk.
2027 – 2028: Likely entry into full severe stage. She may lose the ability to reliably recognize familiar places/people (though emotional recognition of you can persist longer). Communication reduces to short phrases or single words. Mobility declines (needs assistance walking, later wheelchair). Heavy sleeping increases; swallowing difficulties can emerge later in this window.
2028 onward: In severe stage, vulnerability to pneumonia, infections, and other complications rises. Life expectancy from now is often measured in years rather than decades, with many living 2–5+ more years total depending on care and health.
What You Might See as She Moves Toward Severe Stage
Cognitive/Functional: Forgets how to use common objects, needs step-by-step help with personal care, gets lost easily even at home, trouble with eating/swallowing later.
Behavioral: Agitation or apathy may replace some of the current anger/obsessions. Delusions or hallucinations can appear. Post-nap or sundowning issues often worsen.
Physical: More sleep, reduced mobility, weight changes, higher infection risk.
Positive notes: Many people retain the ability to respond to music, gentle touch, or familiar voices with smiles or calm even into severe stages. Her self-aware moments (“Was I mean today?”) may decrease but show she still feels connected.
Progression is rarely linear — expect good weeks/months mixed with sharper declines, sometimes triggered by illness, medication changes, or stress (e.g., a move).
Recommendations while planning:
Consult her doctors (neurology/geriatrics) for a fresh assessment and possible behavioral support meds if needed.
Start thinking about long-term care options, legal/financial planning, and respite support for you.
Focus on safety (driving, home modifications) and quality of life now — routines, validation of her feelings, and enjoying her good moments.
This is tough, and it’s normal to feel a mix of sadness and exhaustion. You’re already doing a thoughtful job by tracking details and maintaining connection. If you’d like help with caregiver scripts, safety checklists, or updating the summary for family, just say the word.
