Dementia Journal

A Journal of Suzanne’s Journey with Dementia

Kept by George, for family and close friends

In the following account, I want to keep the record, but I also want to incorporate the events into the context of Christian faith. Patterns emerge, which I think is important for any diagnosis. These patterns are consistent with some form of dementia. The focus is upon what is happening to Suzanne, but I will also note what is happening to me as well. 

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 seems consistent with the current stage of a progressive form of progressive dementia: 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 this stage of progressive 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.

May 15, 2026: Spent much of the day looping on wanting the hormone doctor in Clearwater to stop her from “getting fat.”

May 20 – Dr. MacKay Visit (Palm Harbor): After months of Suzanne talking about Dr. MacKay as having the “perfect mix,” you drove her to the appointment. The office said they would call her. When they didn’t, she called them. The doctor requested a mammogram and records from previous doctor Dr. Ibrahim before proceeding. Suzanne interpreted this reasonable request as the doctor being “mean.”

She immediately began considering going back to Dr. Ibrahim (the same doctor she has cursed for months, blaming him for making her legs “large/thick” — which they are not).

Now flipping again to her January plan: Working with Mike at GNC to get the “right mix” of vitamins and minerals.

June 1 - June 1, 2026 (Evening): After a good week and a pleasant day shopping together, Suzanne suddenly became angry while listening to the news. She stormed around, announced she was going to bed, yelled at you to “get away” when you said the episode was over, and angrily took the dog for a walk.

The June 1 evening outburst is an example of sundowning / sudden agitation that often occurs in progressive dementia. After a prolonged good period, a minor trigger (news) led to rapid escalation and anger directed at you. These swings from pleasant to furious can happen with little warning and are very exhausting for caregivers.

This latest incident shows how quickly things can shift even after good days. The fact that she took the dog for a walk suggests she still has some ability to channel agitation into action, but the sudden rage is concerning.

June 2, 2026, she woke angry about last night, angry about Joy and her friends who exclude her, and angry that she had a home health care worker coming today. She softened over the next few hours. Jeff Hazard was the nurse who came, visiting from 9:45-11:45. She failed the clock test and the three word test. He persuaded her to see a neurologist. He was direct that her memory issues were dementia. He said several times that she has a husband who loves her and that she needs to trust him to make some decisions for her. Afterward, she brought up two persons whom we know who have dementia, did not want to receive medication that made her gain weight, and said it would be better for me if she would just die and get it over with. That last phrase comes from seeing what happens to people who have dementia and not wanting her life to end that way.

June 3: Woke up angry, repeatedly saying “that man messed with my mind” and that he had no right to speak to her that way. Continued looping on this throughout the day. It was a particularly sad day watching Suzanne briefly confront the reality of her condition. Her current anger at the nurse is a form of denial and grief. Wisdom and compassion would say that she needs more physical comfort and embraces rather than arguments about what was said. This is a textbook grief response (anger/denial) after a moment of painful awareness. The fact that she had a genuine, sad recognition of her situation — followed by a hug — shows she still has emotional depth and connection with me. 

June 9:

Woke mad about female leaking and wanting to restart hormone pellets with Dr. Ibrahim.

Quieted somewhat after the home healthcare nurse visit.

Became angry again upon waking this morning, returning to the hormone/leaking topic.

The June 9 events show the continuing cycle: morning agitation tied to physical complaints (leaking), strong perseveration on hormone pellets, and rapid flipping between contradictory solutions (Dr. Ibrahim vs. GNC/vitamins). The temporary calming after the nurse visit followed by renewed anger upon waking is typical of her current stage. Her attribution of symptoms to stopping pellets reflects both real possible side effects and the brain’s tendency to fixate on familiar explanations.

June 14–19 Son Tim visited deciding to leave early (subtracting two days). Tim stayed with us. Saw Kelly Monday night and Thursday night.

June 14: Frustrated before visitors arrived because she couldn’t remember something; said she wished she could die.

June 17: Became aggravated with me, pointed her finger, and showed increased suspicion. I noticed “something changed in her eyes” and that normal social barriers were breaking down — she was more openly vocal about her thoughts.

June 18 Morning: Asked me for the name of her other son, Randy (significant memory lapse).

Suzanne wanted me present during time with Tim rather than having one-on-one time.

I took the Jeep to Trinity Collision for radio diagnosis and walked to the fitness center for a workout, giving Tim and Suzanne some time together. Tim watched the movie Gran Turismo while Suzanne was aggravated with him. She was very vocal about her irritation, but Tim calmly ignored it and continued watching.

You noted she was getting close to “outlandish” behavior but has not crossed that line yet.

Dinner Cruise in Clearwater (June 19 evening): The family went on a dinner cruise. Suzanne turned around at one point and panicked when she didn’t see anyone. She called you (you were at the kiosk paying for parking), while Tim and Kelly had stepped into a store. When you returned, she said Tim was mad at her but that she “did not care.”

The cruise itself turned out pleasant with a nice meal and music. Tim drove everyone home.

The next day, the 19th, Tim and Kelly spoke with Suzanne about dementia without me present. After they left, Suzanne mentioned that Tim had given her some information about food and put it on her phone. However, she felt Kelly “jumped in with her brilliant ideas,” and said she “could have cared less.”

After some research, I found no credible scientific basis that certain spices can reverse dementia. It’s what a lot of adult children do when they see what’s happening but don’t live with it daily: they go searching for hope and land on something that sounds promising. Unfortunately, there is no credible scientific evidence that any combination of spices (or herbs, supplements, etc.) can reverse dementia. Some spices like turmeric (curcumin) or cinnamon have been studied for possible mild anti-inflammatory effects, but nothing comes close to reversing the disease process.

I anticipate that some of what they discussed may return as perseveration in the coming days, though it might be less intense because the conversation was initiated by Tim.

Post-visit: After Tim and Kelly left, Suzanne crashed — slept on the couch for ~2.5 hours and remained in and out of sleep, showing clear exhaustion.

June 19 Evening: As we went to bed, I asked if she was sad. She said “Yes” but did not want to talk about it. I believe she is processing the direct dementia conversation Tim and Kelly had with her.

Overall Pattern During the Visit

The visit highlighted increasing disinhibition and family strain. Suzanne’s reduced social filtering (pointing, open aggravation, vocal complaints), memory lapse with her son’s name, and expressed wish to die show the disease progressing in the frontal and temporal areas. The contrast between her agitation and Tim’s calm response is notable. These episodes are emotionally draining but consistent with late moderate dementia. Suzanne’s increasing dependence on me as her main source of security, heightened anxiety when separated from me even briefly, and growing disinhibition. There were pleasant moments (the dinner cruise), but also clear strain, panic, and family tension. Her mixed reaction to the dementia conversation with Tim and Kelly (some acceptance of info, dismissal of Kelly’s input) is typical.

Highlights. This was another challenging stretch, especially with Tim visiting. The increased vocal disinhibition and family-directed frustration are hard to watch. The unsolicited dementia discussion by Tim and Kelly appears to have left her sad and reflective in the evening. Based on past patterns (e.g., reaction to Nurse Jeff Hazard), this sadness may shift into anger or denial in the coming days as she processes the conversation. I continue trying to approach memory/dementia topics gently with her, while outside conversations (from Tim/Kelly or medical professionals) often trigger stronger emotional backlash.

Pensacola Trip (June 23–26) Me, Suzanne, and the dog Collette drove to Pensacola (10-hour trip each way) to watch grandson Henry play on his travel baseball team. Suzanne repeatedly complained about the long drive and stated we “will not do this again.” I attended three games on June 24 and 25, had dinner at Flounders, and spent some time at the beach. Suzanne did not attend any of these activities because she did not want to leave the dog alone in the strange hotel room. She stayed in the room with Collette, taking her for walks and watching Game of Thrones.

Moments of Anger: Both days there were episodes where she became angry that you were out with Henry. She pointed her finger at you, accused you of “giving in to my sons,” and on June 25 said, “Go ahead Collette, bite his dick off.” She was also angry about driving the Jeep instead of Michael’s car. In both cases, she seemed to get over the anger relatively quickly.

Positive Moments: We had some passionate moments. When with Henry and my sons, Suzanne was generally pleasant and tried to stay engaged in conversations. Michael was sensitive to her situation and conversed with her; David largely ignored her.

Overall Pattern During the Trip: The trip highlighted Suzanne’s increasing difficulty with long separations from me, strong attachment to the dog, and lowered tolerance for disruption of her routine. She showed clear disinhibition when alone with you (pointing, explicit angry comment), but could still present pleasantly in social/family settings for short periods. The 10-hour drives were very taxing for her, and the whole experience reinforced her resistance to similar future trips.

Caregiver Note: I was able to spend meaningful time with Henry, but at the cost of managing Suzanne’s anger and frustration during the trip. This trip was a mixed bag — good family moments with Henry, but also clear signs of increasing strain on Suzanne (and me). The explicit comment toward me is a notable escalation in disinhibition. I also note that my surprise at how much enjoyed being with Henry, watching baseball, seeing my last name on his jersey, and talking with the other dads, shows that my world has gotten small. I need to find ways of broadening my world. I have been so deep in the day-to-day grind with Suzanne that even a simple thing like sitting in the stands, talking with other guys, and watching a baseball game felt surprisingly good. The fact that it caught me off guard says a lot. It shows how little breathing room and normal social connection I have had lately.

That moment of enjoyment became a mirror. It showed you how much you’ve been missing — and how small my life has quietly shrunk. That’s a heavy realization to sit with.

July 3 Suzanne woke from an early afternoon nap focused on a specific supplement for regularity that needs to be ordered from Amazon. There was confusion because we had recently purchased a similar product. This escalated into a ~45-minute rage. Key escalation: She grabbed the bottle we had bought, slammed it down hard on the counter, and crushed it, shattering glass onto the floor. She accused me of trying to kill her, expressed hatred for this place, and lashed out at the dog. I listened without arguing, stayed calm, ordered the product she wanted, and cleaned up the glass. The episode eventually de-escalated, and she became nice and passionate again.

This is a notable escalation in intensity, even if physical outbursts like this are still infrequent. Throwing/crushing objects (I have noted pencils, glasses, calendar, Coke bottle in the past) combined with the glass shattering adds a safety layer—risk of cuts for her, me, or the dog, plus cleanup stress. The rapid shift from rage to connection remains consistent with her fluctuating pattern.

Reflection:

These incidents feel personal and frightening in the moment, but they stem from physical damage in the brain—loss of impulse control and frustration from confusion or perceived threats. I hope the choice not to respond showed both wisdom and love. “Let us not grow weary of doing good…” (Galatians 6:9). The passionate reconnection afterward is grace amid the storm.

This fits the late moderate stage without indicating a sudden overall acceleration, but the physical element is worth watching.

July 5, 2026 

Suzanne woke focused on her weight, which has gone from 112 to 116. She had told me yesterday it was 125, and when I gently pointed out the discrepancy, she threw a shoe at me. Later, she began cussing and said she wished she could just die and get it over with.

I tried to persuade her to go to church this morning—for distraction, a change of scenery, and time with others—but she was not interested.

Pattern notes: Perseveration has shifted again (now weight, following supplements/hormones/legs). This includes exaggeration of numbers and frustration when corrected. The shoe-throwing is another instance of physical acting out (following the July 3 glass-shattering incident), though still relatively infrequent and not highly injurious. The “wish to die” comments reflect ongoing grief, self-awareness, and emotional lability common in this stage. Resistance to outings is increasing, especially when fixated.

I tried redirection and social/spiritual engagement (church)—this sometimes works but not always, particularly when she’s locked into a negative loop. It’s okay when persuasion doesn’t land; forcing it can escalate things. The disease is making her world smaller and more frightening, and corrections (even gentle ones) can feel like attacks in the moment.

Practical thoughts:

Weight perseveration: Similar to past fixations—may loop for days/weeks. Physical outbursts: Shoe, glass, previous thrown items—monitor frequency. If they increase or become more targeted, it’s useful data.

This remains consistent with late moderate stage.

July 10

Suzanne had a moment of anger and frustration over not remembering simple cooking tasks. We went shopping with her driving the Jeep. During/after this, she expressed deep despair: “If you wake up and I do not move, just let me die. Throw my body in the ocean.” (Paraphrased—she indicated a desire and need to figure out how to die.) She added, “There is no God. I must have been such a rotten person to deserve this.”

Pattern notes: Preceded by functional frustration (memory lapses in familiar tasks like cooking)—a common trigger. Outing (shopping, driving) provided some activity but did not prevent the despair. This is a deeper, more explicit expression of suicidal ideation and existential grief than prior “wish to die” comments. It includes self-blame, spiritual despair, and passive/active thoughts of death. These can stem from physical damage affecting emotional regulation and insight, combined with grief over losses. However, I will need to track this carefully. It might be a one-off, but if it becomes a pattern, I will need act differently. She is still driving short familiar routes, but with functional decline and agitation, this carries growing risk. Reassess regularly. 

This continues the late moderate stage pattern—

A favorite passage comes to mind: “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).

July 15 Mid-Afternoon Insight and Post-Nap Despair - Suzanne looked at me directly and asked what would happen to her because of her increasing difficulty communicating her thoughts. When she struggled today, she cursed (“God damn, fuck”). I told her that at some point she might stop trying to talk as much. She seemed okay with that until a brief nap. When she woke up, her mood turned very dark: “I cannot stop myself from falling asleep. I do not accomplish anything during the day. So, I will just be dead. You would be better off anyway. Just give me a pill and let me die.” This was surprising after a reasonably good day—nice lunch at home and a trip to Sam’s Club for shopping.

Pattern notes:

Rare moment of clear self-awareness and insight into her communication decline, followed by frustration (cursing). This was insight colliding with frustration and the sense of the burden she is caring. 

Post-nap shift to profound despair, helplessness, and explicit suicidal ideation (“give me a pill”). This is more direct than previous “wish to die” comments.

Contrast with a pleasant day beforehand underscores the unpredictable, nap-triggered fluctuations.

Caregiver reflection:

These glimpses of insight are bittersweet—she still senses the losses. The post-nap darkness is a recurring trigger I have documented. Hearing her say you’d be “better off” and asking for a pill is painful and carries extra weight. 

Important: Statements like “give me a pill and let me die” are serious, even if they come from the disease. 

As for myself, last night I had some time at a brainstorming event for At the Movies, an annual event at the church. It was refreshing and replenishing, where I could set aside for a couple hours the smallness of the world as I experience it now and expand it with interacting with others through laughter and sharing ideas.

All this is still consistent with late moderate stage dementia.

July 16 After taking Progesterone 200 mg (prescribed by her hormone doctor to aid sleep), Suzanne concluded it “made her crazy.” She was very angry at our standard poodle Collette. She perseverated on the idea that Collette does not eat. When I pointed out that the dog poops daily, maintains a healthy 35-pound weight at the vet, and is clearly eating fine, it set her off further. She yelled at Collette, calling her a “stupid little shit,” saying she could “just die,” and that she wasn’t going to feed her today. (She did feed her later.)

New escalation: She took her fists and beat me three times on the chest with full strength. (Because I lift weights, I barely felt it physically, but it was a clear act of aggression.) Later that morning, after we bought new dog food, she struggled to open the bag, tried a knife without success, and threw the knife on the floor.

Pattern notes: Attributing her distress to the progesterone appears to be a new variation of her recurring perseveration around hormones and diet.

Intense focus on the dog’s eating — classic shifting perseveration.

Verbal aggression toward the dog and physical aggression toward me (chest hitting) and objects (knife) represent an uptick in disinhibition and frustration-driven outbursts.

Some self-correction later (feeding the dog) shows the fluctuations are still present.

The physical contact (hitting) and throwing a knife are concerning new elements, even if I was not hurt and the knife incident didn’t cause injury. These build on the recent glass-shattering and shoe-throwing. They signal increasing impulsivity and loss of control when frustrated. 

Safety note: With physical aggression appearing more often (hitting me, throwing objects), it’s wise to prioritize safety. 

July 20–21, 2026 – Confabulation and Word/Object Mix-Ups. During shopping, Suzanne repeatedly said we needed milk. We don’t usually buy milk, so I asked for clarification. She eventually opened the refrigerator, pointed to the eggs, and said, “We need milk.” After going out for lunch and getting chicken wings, she complained that we got chicken out because we already had it at home. Since we had just shopped, I knew we didn’t have chicken. Later, she referred to the Steakhouse hamburger we had just bought as chicken.

Pattern notes: These appear to be examples of confabulation (filling in memory gaps with incorrect but believed information) and semantic mix-ups (confusing related items: eggs/milk, chicken/hamburger). This is a clearer sign of language and memory processing difficulties beyond simple word-finding. It fits with the functional decline you’ve tracked (e.g., calendar/numbers, cooking tasks).

Significance: This is noteworthy. It shows progression in cognitive symptoms, even if the overall day included normal activities like shopping and eating out. These mix-ups are common as physical damage progresses, but they can be startling when they involve everyday objects. The fact that she was insistent and pointed to the “evidence” (eggs) shows she genuinely believed it at the time.

July 28, 2026 The book 101 Brain Hacks to Prevent and Even Reverse Dementia (Including Alzheimer’s) by Dr. Clint Steele is a popular self-help/lifestyle title that leans heavily on the word “reverse.” Tim sent it to Suzi. I’ve looked it over. A lot of the practical suggestions (sleep, movement, reducing stress, etc.) are sensible and line up with general brain-health advice. The stronger claims about “reversing” dementia go beyond what current medical evidence supports for progressive dementia once it’s in the moderate stage. 

August 3–10, 2026 Suzanne was angry almost every day. The anger targeted me and the dog. She accused me of trying to kill her at points. Then she would shift and want intimacy—we had sex three times during the week.

She slept a great deal. When awake, the anger cycled through familiar themes: a doctor, the dog not eating enough or not acting the way she thought she should, her legs, and now her tummy. She keeps grabbing her stomach and saying it is too big.

In earlier months her outbursts usually lasted ten minutes or less and then passed. This stretch lasted days.

All this is having an effect on me. My sleep dropped to five or six hours a night instead of the usual six-and-a-half to seven-and-a-half. I have started biting my fingernails again—something I had not done in decades. The sustained anger is wearing on me physically as well as emotionally.

August 14–16, 2026 Entry - Suzanne has developed a new set of symptoms around her bowel movements. The doctor prescribed three different things to help, but I cannot tell whether she is actually going or not. She will say she did, then later claim it has been three days. This has quickly become another perseveration: the prescriptions are not working, the doctor does not care, and the cycle of blame continues. She now wants to see her primary care doctor first and then a specialist. That path makes sense and may finally get the bowel issue checked properly. At the same time, it feels familiar. Just yesterday she was locked onto the hormone pellets and how bad that doctor is. The target keeps shifting—legs, tummy, pellets, now the bowel meds—but the pattern is the same. Even through the long stretch of anger earlier this month, she retained enough self-awareness to discuss what she had done, acknowledge the chest-hitting and the accusations, and apologize. She said the anger is really about what is happening to her, including anger at God and church. That insight is still present, even as the loops grow longer and harder to interrupt.

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. Even when she was angry almost every waking moment from August 3-10, 2026, at the end we could have a discussion about how angry she has been, how she beat my chest three times as strong as she could, how she accused me of trying to kill her, and she apologized, stressing that she is angry about what is happening to her, including at God and church. Yet, when Saturday night comes, she is ready to go.

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.

Although we have talked about going to a neurologist, which is what our PCP has suggested, Suzanne has not wanted to go. However, in August 2026 she agreed to go. We have a date set for the end of the month.

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 — resemble descriptions of frontal lobe involvement, 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. However, I will refer to the condition as progressive demential until I receive an official diagnosis of the type of dementia. However, Primary Care persons and Home Health Care Nurse are clear that she has a form of dementia.

Perseveration (per-SEV-er-a-tion), according to Encarta Dictionary, is a noun meaning a response repetition in inappropriate situations, a tendency to repeat the response to an experience in later situations where it is not appropriate. The word is relatively recent, formed in the 20th century by analogy with the word with which we have more familiarity, persevere. It describes a brain condition that causes people to be stuck in a particular pattern of behavior. Perseveration is a brain dysfunction that causes people to persist in a task — to carry on in a completely illogical way, even when the chosen strategy is doomed and could lead to death. Perseveration can be a problem for all of us. Fatal fixations can pop up in our work, our parenting, our friendships and our faith lives, causing us to pursue strategies that are doomed and even disastrous. It is not limited to dementia. 

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).

Understanding What Happens in Dementia

Dementia causes physical changes in the brain. It is not simply forgetfulness or someone choosing to behave differently—it is a disease that gradually damages brain cells.

As the disease progresses, abnormal proteins build up inside brain cells. These proteins interfere with how the cells work, preventing them from communicating normally with each other. Over time, the damaged brain cells die.

As more brain cells are lost, the affected parts of the brain begin to shrink. In frontotemporal dementia, this shrinkage mainly occurs in the frontal lobes, which are responsible for judgment, self-control, planning, decision-making, emotional regulation, and appropriate social behavior. Brain scans, such as MRI, can often show this shrinkage.

The frontal lobes are often described as the brain's "CEO." When these areas are damaged, it becomes harder for the person to control impulses, make sound decisions, regulate emotions, or behave in ways that once came naturally. These changes are the result of damage to the brain—not a change in character or intention.

At this time, dementia is a progressive and irreversible disease. No treatment can stop the buildup of abnormal proteins or prevent the loss of brain cells, although medications and supportive strategies can help manage symptoms and improve quality of life.

Remembering that these behaviors are caused by the disease—not by the person—can make them feel a little less personal. The moments of warmth, love, humor, and connection that still shine through are real. They happen because some parts of the brain remain healthy for a time, allowing emotional memories and important aspects of the person's personality to continue even as the disease progresses.

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.

Legal Notes

June 9: Completed Health Care Surrogate and Living Will forms. Witnesses and notarization still needed. She did well, but at the end she was very tired.

Reviewed Florida statutory Durable Power of Attorney form — recommended to complete this soon as well.

As of May 14, 2026, I am beginning to look for the legal documents I need, such as Power of Attorney. She did sign them, but I have yet to ask two persons to witness our signatures as of August 2026.

Support Resources 

RELIEF Program (Respite for Elders Living in Everyday Families): Provides free in-home companionship and respite care using screened volunteers. Especially useful for evening and weekend breaks.

Community Care for the Elderly (CCE) and Home Care for the Elderly (HCE): State programs that can offer community-based services, small subsidies, homemaker support, or personal care aides to help elders remain at home.

SMMC LTC (Statewide Medicaid Managed Care Long-Term Care): Comprehensive in-home or facility care for those who qualify financially and medically.

Access: Call the Florida Elder Helpline at 1-800-96-ELDER (1-800-963-5337). They will connect you to the local Area Agency on Aging in your region (Pasco/Pinellas) for a needs assessment.

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.”

Reflection on the Journal

My intent is not to document incidents, but to document patterns over time. I trust this will be more helpful to a future neurologist. I realize that I blend observation, context, and interpretation at points, although I have tried to get better at separating them. My intent in this journal is to seek understanding of what is happening both to her and to me. Thus, I include evidence that does not fit a simple narrative.

* unusually good days

* affectionate moments

* lucid conversations

* improvements after certain activities

* your own uncertainty

I trust that increases the credibility of my observations. I am not forcing every event into a preconceived explanation; I am allowing the pattern to emerge over time.

I want to keep this journal so that I can pay attention to what is happening both to Suzanne and to me. Her memory issues have characteristics of a form of progressive dementia that I hope to describe in the following account. The patterns described are consistent with the kinds of patterns neurologists and geriatricians look for when evaluating a progressive dementia. This journal reflects longitudinal observation rather than isolated anecdotes, which I hope a future clinician would value.

So far the patterns are the following.

1. Progressive cognitive decline The journal doesn't simply record forgetfulness. It documents changes across multiple cognitive domains over time.

Early on, I describe:

* difficulty recalling names and places

* failing three-word recall tests

* word-finding problems

Later I observe:

* inability to write "12:30"

* selecting a spoon and fork before realizing a knife was needed

* confusing eggs and milk

* confusing a hamburger with chicken

* asking for Randy's name

That progression—from relatively isolated memory problems toward impairment in language, executive function, and learned tasks—is consistent with a progressive neurodegenerative disorder.

2. Functional decline - Neurologists are often more interested in **loss of function** than memory complaints alone. The journal repeatedly documents changes in everyday functioning:

* writing numbers

* using kitchen utensils

* shopping

* driving

* following appointments

* organizing thoughts

3. Fluctuation - I note fluctuations.

For example:

* unable to answer orientation questions one day, answers correctly the next

* severe post-nap confusion followed later by affection

* periods of unusually fluent speech

* days of relatively normal conversation

People sometimes assume dementia is a smooth downward slope. It rarely is. Many dementias have surprisingly good days and surprisingly difficult days.

4. Emotional dysregulation - Another consistent pattern is frustration triggered by cognitive failure. Examples include:

* inability to remember a word

* inability to write numbers

* throwing objects

* pounding the desk

* clenched fists

* tears

Importantly, the journal shows these episodes usually arise after hitting a cognitive wall. That temporal relationship is clinically meaningful.

5. Perseveration - Examples include repeated looping around:

* hormone pellets

* leg size

* moving

* doctors

* supplements

* the dog eating

I don't merely mention perseveration. I document how the subject changes while the pattern remains the same. This helps distinguish personality from disease.

6. Preserved emotional connection - I repeatedly note:

* flirting

* intimacy

* humor

* smiling

* asking "Was I mean today?"

* enjoying music

* trusting you to guess words

Those observations are important because dementia is rarely "all loss.” The journal reflects that complexity.

7. Increasing behavioral symptoms - Over time I describe increasing:

* suspicion

* jealousy

* verbal aggression

* physical aggression

* disinhibition

* impulsive throwing of objects

Again, the important thing is not one incident. It's the progression.