Generated by All in One SEO v5.0.0.1, this is an llms.txt file, used by LLMs to index the site. # Here & Not Here An FTD Journey ## Sitemaps - [XML Sitemap](https://hereandnothere.com/sitemap.xml): Contains all public & indexable URLs for this website. ## Posts - [Slow Moving Diagnosis: Part 3 - Consult with neuropsychology](https://hereandnothere.com/slow-moving-diagnosis-part-3-consult-with-neuropsychology/1118/2023/07/10/) - Brain imaging can tell us what parts of a brain may be impacted by diseasebut it takes some additional testing to come to a more accurate diagnosis... - [Before Dementia: Part 3 - Magic and Leprechauns](https://hereandnothere.com/before-dementia-part-3-magic-and-leprechauns/748/2023/06/26/) - Tracy the Leprechaun visited us every year on March 17. He left yellowed notes on tiny scraps of paper each year, handwritten in a left-handed cursive… - [6 things I've learned since my husband died](https://hereandnothere.com/6-things-ive-learned-since-my-husband-died/2604/2024/11/25/) - My year of grieving has taught me so much about life and how to live in gratitude and with forbearance. I’m a better person today than I was a year ago… - [After Dementia: What comes next?](https://hereandnothere.com/after-dementia-what-comes-next/2582/2024/09/16/) - Robert died almost one year ago. I have begun to catalog what I’ve learned in the last few years and what telling our story has meant to me and others… - [Relinquishing my husband’s body](https://hereandnothere.com/relinquishing-my-husbands-body/2539/2024/09/02/) - I had never before seen a person just hours after they had died. I found it unbearable that my husband had left us. He wasn't supposed to die today. - [The day my husband died](https://hereandnothere.com/the-day-my-husband-died/1608/2024/08/26/) - My dear, sweet husband, Robert, has passed away. Our story is incomplete, but in this story, I continue the chronological unspooling of our lives… - [Catching up to now...again.](https://hereandnothere.com/catching-up-to-now-again/2493/2024/08/19/) - Today's story was originally published on September 4, 2023. The tale of our dear Robert is winding down. - [Choosing life, one date at a time](https://hereandnothere.com/choosing-life-one-date-at-a-time/2479/2024/08/12/) - I broke watching my husband decline. I felt I was dying with him. Could a new relationship save me? - [Navigating hospice intake for my husband](https://hereandnothere.com/navigating-hospice-intake-for-my-husband/2455/2024/08/05/) - How do we prepare our minds and bodies for the last six months of our loved one’s life? We can't. How do we prepare for the last six months of our loved one’s life? We don’t. - [How dating brought me back to my husband](https://hereandnothere.com/how-dating-brought-me-back-to-my-husband/2435/2024/07/22/) - I had been so frustrated with Robert for so long that I had forgotten what a kind, gentle, man he is. I forgot that I loved him. Let me explain. - [How to cut an onion without crying](https://hereandnothere.com/how-to-cut-an-onion-without-crying/2348/2024/07/08/) - And other lessons on how to be flexible in a new relationship. - [Letting Go: Part 3 - When it's time for hospice](https://hereandnothere.com/letting-go-part-3-when-its-time-for-hospice/2328/2024/07/29/) - My husband’s black vomit from four months ago was back over the weekend. My daughter crystallized our next steps. “Follow Dad’s care plan.” - [Letting Go: Part 2 - It's time for palliative care](https://hereandnothere.com/letting-go-part-2-when-its-time-for-palliative-care/2315/2024/07/15/) - Our most recent visit to the clinic would turn out to be our last. Robert’s care needs haven’t changed, but transporting him to the clinic is challenging… - [I don't want to be alone. Now what?](https://hereandnothere.com/i-dont-want-to-be-alone-now-what/2087/2024/04/29/) - In many ways, spouses are as imprisoned as their loved ones with dementia. What if a full life means being in a loving, reciprocal, committed partnership… - [Putting myself out there](https://hereandnothere.com/putting-myself-out-there/2099/2024/05/06/) - My daughter encouraged me to start dating when her father, my husband, was in memory care. This is how I started to present myself to the world… - [Diddling around the edges of online dating](https://hereandnothere.com/diddling-around-the-edges-of-online-dating/2117/2024/05/13/) - For months after posting my dating profile, I picked through online profiles of potential companions without ever “liking” one. I felt a swell of anxiety… - [This isn't actually a date, is it?](https://hereandnothere.com/this-isnt-actually-a-date-is-it/2178/2024/05/20/) - The prospect of dancing in public unnerved me. My sweet Robert and I hadn’t danced in years. The last time we’d taken a spin around the floor was at Maddie’s… - [Joy again? Life is sneaky like that.](https://hereandnothere.com/joy-again-life-is-sneaky-like-that/2273/2024/06/24/) - Will and I started seeing each other 18 months after I placed my husband in a memory care facility. I was lonely after years of declining companionship… - [Letting Go: Part 1 - Black vomit](https://hereandnothere.com/letting-go-part-1-black-vomit/2289/2024/07/01/) - Overnight Robert threw up black vomit at 3am and 5am. Black vomit equals blood. I felt my stomach drop and willed myself to deal with what was in front of… - [Away from your family to take care of mine](https://hereandnothere.com/away-from-your-family-to-take-care-of-mine/2230/2024/06/17/) - Gardenia Place is a board and care home with generous, private residents' bedrooms. The four women who work at Gardenia Place also live at Gardenia Place… - [Finally, a better home for my husband](https://hereandnothere.com/finally-a-better-home-for-my-husband/2202/2024/06/10/) - Skeptical of finding a memory care placement that wouldn’t break my heart or my wallet, I was dispirited by the time I toured Gardenia Place… - [When my husband's care home took a header](https://hereandnothere.com/when-my-husbands-care-home-took-a-header/2188/2024/05/27/) - Sometimes we must experience a situation from an outsider’s perspective to truly see it. Walking into Robert’s room with Jackson, I saw Robert’s environment… - [Reflections on being human: Part 2](https://hereandnothere.com/reflections-on-being-human-part-2/2080/2024/04/22/) - In writing about my journey with my husband’s dementia I’ve had to abstract ideas before I can write about them. I’ve continued to ponder the bigger… - [Sort of alone in Alaska](https://hereandnothere.com/sort-of-alone-in-alaska/2044/2024/04/08/) - I decided to go to Alaska. I wasn’t trying to check destinations off a menu, I was trying to learn what being alone with my experiences might be like… - [An experiment vacationing solo](https://hereandnothere.com/an-experiment-vacationing-solo/2060/2024/04/15/) - The year after my trip to Alaska sped by. I continued therapy, working through the torrent of emotions, thwarted life plans… - [When I decided I had to retire](https://hereandnothere.com/when-i-decided-i-had-to-retire/2024/2024/04/01/) - When I saw “I decided” to retire that might be imbuing my choice with too much rationale. The upheaval of the past few years had caught up with me… - [The genetics of FTD. Do you want to know?](https://hereandnothere.com/the-genetics-of-ftd-do-you-want-to-know/2001/2024/03/25/) - When your loved one is diagnosed with a shocking, terminal illness do you really want to know if there is a genetic link? The implications for your kids... - [When my world was blown apart](https://hereandnothere.com/when-my-world-was-blown-apart/1984/2024/03/18/) - My world was blown apart when I moved Robert to Daylight Memory Care. He had been a physical presence in my day-to-day life for over 42 years and now he was… - [A bottom-feeding, for-profit business](https://hereandnothere.com/a-bottom-feeding-for-profit-business/1965/2024/03/11/) - Now that I’ve got your attention, let me share some truths about the business of elder care that will curl your toenails and curdle your stomach… - [Yes, I am okay despite these feelings](https://hereandnothere.com/yes-i-am-okay-despite-these-feelings/1928/2024/02/26/) - In last week’s story, I recounted a very difficult day, one in which I was overcome with anticipatory grief. Many of you have reached out to make sure I am… - [This is not such a great day](https://hereandnothere.com/this-is-not-such-a-great-day/1900/2024/02/19/) - Anticipatory grief is not the miasma of unrelenting, clinical depression that can be triaged and resolved with a 10-minute psychiatric check-in and,,, - [A funny from dementia’s front lines](https://hereandnothere.com/a-funny-from-dementias-front-lines/1888/2024/02/12/) - Many of my stories have been sad, because dementia is sad. But occasionally, funny things happen that elevate my experience to comic levels and bring a smile… - [When I found myself alone](https://hereandnothere.com/when-i-found-myself-alone/1871/2024/02/05/) - I collapsed on the double bed that was no longer ours, but mine alone. I’d just completed Robert’s move to Daylight Assisted Living and Memory Care… - [Moving out of our family home: Part 3](https://hereandnothere.com/moving-out-of-our-family-home-part-3/1858/2024/01/29/) - I parked, unbuckled Robert’s seat belt, and ever so gently, I turned his body and pulled his legs out of the car readying to lift him to his feet and… - [Moving out of our family home: Part 2](https://hereandnothere.com/moving-out-of-our-family-home-part-2/1843/2024/01/22/) - The day dawned overcast and humid, a chilly 52 degrees.This was the day we would move Robert to Daylight Assisted Living and Memory Care… - [Moving out of our family home: Part 1](https://hereandnothere.com/moving-out-of-our-family-home-part-1/1826/2024/01/15/) - I do well when I’m charged with a project that has a natural end point. Preparing to move Robert to Daylight was gut-wrenching, but with a list I could turn it… - [Selecting a care home for my husband](https://hereandnothere.com/selecting-a-care-home-for-my-husband/1805/2024/01/08/) - My sister and I readied ourselves to tour the two memory care homes she’d made appointments with. I labored over what to wear. Seriously? Yes, I did... - [Could I move my husband to memory care?](https://hereandnothere.com/could-i-actually-move-my-husband/1788/2023/12/18/) - My sister, Elizabeth, arrived on the shuttle bus from San Francisco Airport (SFO) in early February. Her trip from Wisconsin had been planned as a holiday… - [The stunning cost of memory care](https://hereandnothere.com/the-stunning-cost-of-memory-care/1745/2023/12/11/) - I looked across the slick expanse of the long, polished conference table. I was waiting for the executive director of the Daylight Assisted Living and Memory… - [What is my obligation to my husband?](https://hereandnothere.com/what-is-my-obligation-to-my-husband/1738/2023/12/04/) - Was I obligated to give up my life for Robert’s? This was the question I asked in my last story. This was the moral dilemna at the center of my ruminations… - [What if you are not caregiver material?](https://hereandnothere.com/what-happens-if-you-are-not-caregiver-material/1728/2023/11/27/) - In the early days of caring for Robert full-time, my days unfurled in yawning monotony. Dreary, relentless, and unchanging, repetitive tasks crowded my… - [So you think you can be a caregiver?](https://hereandnothere.com/so-you-think-you-can-be-a-caregiver/1721/2023/11/20/) - I rolled over, checked the time on my phone, and sat up in bed. It was 6:15. As much as I wanted to sleep in, I was anchored in my work schedule, looking… - [Don’t quit. Take leave under FMLA.](https://hereandnothere.com/dont-quit-take-leave-under-fmla/1705/2023/11/13/) - It was early January 2021. The first COVID-19 vaccine had been approved by the FDA, but it was not yet widely available. Non-essential workers like me... - [Good luck quitting your job](https://hereandnothere.com/good-luck-quitting-your-job/1674/2023/11/06/) - I ducked into the unused rental unit behind our house to phone my boss to quit my job. I really didn’t want Robert to hear me or interrupt me. I doubted… - [The day I decided to quit my job](https://hereandnothere.com/the-day-i-decided-to-quit-my-job/1662/2023/10/30/) - The morning started like any other. I patted my hair down to some semblance of respectability to get on a 7am call for our biggest product release… - [Finding Jace: A caregiver and a friend](https://hereandnothere.com/finding-jace-a-caregiver-and-a-friend/1599/2023/10/09/) - Jace is a large, ebullient man. He stands 6’ tall and weighs in at about 220 lbs. When we first met I was in “manager mode,” direct and business-like… - [Word of Mouth: How I found a caregiver for my husband](https://hereandnothere.com/word-of-mouth-how-i-found-a-caregiver-for-my-husband/1580/2023/09/25/) - I began my search for a caregiver for Robert after the particularly harrowing day with Robert. The way I was living seemed suddenly ridiculous, precarious… - [I Need Help Now!, part 1](https://hereandnothere.com/i-need-help-now-part-1/1564/2023/09/18/) - I had just logged onto a Skype call to meet with my team in India, barely professional from the waist up, when Robert started groaning on the floor next to… - [Dr. Canio and the POLST](https://hereandnothere.com/dr-canio-and-the-polst/1540/2023/09/11/) - The Geriatrics and Life Stages department was tucked at the back of the clinic, down a long grey corridor. After struggling for 25 minutes to get Robert… - [Behavioral Challenges: Sharing the word of God, part 3](https://hereandnothere.com/behavioral-challenges-sharing-the-word-of-god-part-3/1341/2023/08/28/) - I lay awake at night contemplating where we might move that would be safer. If we didn’t live near a school would that solve the problem... - [Caregiver Fatigue: Part 1 - Respite care](https://hereandnothere.com/caregiver-fatigue-part-1-respite-care/1446/2023/08/07/) - Robert got stuck in the bathtub. He managed to orient his body sideways, his right leg stretched out, his left braced in a triangle with his body propped up… - [Before Dementia: Part 3 - His father’s boy](https://hereandnothere.com/before-dementia-part-3-his-fathers-boy/1145/2023/07/17/) - We’d given up hope that we’d have a second child and had let the years accumulate without pining too much for the wished-for number two… - [Before Dementia: Part 2 - Our daughter starts school](https://hereandnothere.com/before-dementia-part-2-our-daughter-starts-school/908/2023/06/12/) - Our daughter started school at 4 ½ when she was accepted to a year-round elementary program in San Francisco. Robert took her to school on the back of his bike… - [Behavioral Challenges: Sharing the word of God, part 2](https://hereandnothere.com/behavioral-challenges-sharing-the-word-of-god-part-2/1329/2023/08/21/) - Adults are not allowed on the high school campus without signing in, but Robert didn’t believe this rule this applied to him. He’d worked for the school… - [What FTD Looks Like: Part 2 - Candy and disinhibition](https://hereandnothere.com/what-ftd-looks-like-part-2-candy-and-disinhibition/955/2023/07/03/) - Robert did things that he would never have done had his brain been intact. He was “disinhibited,” which made for an exciting romp around town. For him… - [What FTD Looks Like: Part 3 - Counting and mimicking](https://hereandnothere.com/what-ftd-looks-like-part-3-counting-and-mimicking/1290/2023/07/31/) - I was so flustered. I finished paying for our groceries, mumbled an apology to the harried mom, “I’m so sorry. My husband has dementia,” and scuttled out… - [Behavioral Challenges: Sharing the word of God, part 1](https://hereandnothere.com/behavioral-challenges-sharing-the-word-of-god-part-1/1315/2023/08/14/) - I worked hybrid before it was a thing. Having this flexibility was critical to managing the day-to-day demands of Robert’s disease. On a given day… - [Before Dementia: Part 1 - The man I met](https://hereandnothere.com/before-dementia-part-1-the-man-i-met/414/2023/05/05/) - We met at a Thanksgiving dinner in 1982. Robert was taking a creative writing class at UT-Austin and his professor, David, was fond of his wild... - [What FTD Looks Like: Part 1 - Apathy sets in](https://hereandnothere.com/what-ftd-looks-like-part-1-apathy-sets-in/730/2023/05/29/) - In 2017, two years after the “Europe incidents,” Robert stopped listening to the people around him and was often mentally absent, off on a tangent in his mind… - [Slow Moving Diagnosis: Part 4 - Arriving at dementia](https://hereandnothere.com/slow-moving-diagnosis-part-4-arriving-at-dementia/1303/2023/07/24/) - Strokes can affect cognitive function, but the changes in Robert’s behavior couldn’t be explained by a stroke. Robert was increasingly disinhibited… - [Slow Moving Diagnosis: Part 1 - Consult with primary care](https://hereandnothere.com/slow-moving-diagnosis-part-1-consult-with-primary-care/740/2023/06/05/) - Dr. Green asked me what I was concerned about. I looked at the unevenly posted flyers on the wall, considered the dashed line of target blood pressure… - [Slow Moving Diagnosis: Part 2 - Consult with neurology](https://hereandnothere.com/slow-moving-diagnosis-part-2-consult-with-neurology/884/2023/06/19/) - We scheduled an MRI in preparation for Robert's Neurology consult. While there is no cure for most neurodegenerative diseases, knowing what type... - [Our Journey: Part 1 - Where we started](https://hereandnothere.com/our-dementia-journey-part-1-where-we-started/402/2023/05/05/) - My husband, Robert, was diagnosed with Frontotemporal Dementia (FTD) in 2017. Most people think of Alzheimer’s disease when they hear the “D” word... - [Our Journey: Part 2 - Signs of trouble](https://hereandnothere.com/our-journey-part-2-signs-of-trouble/409/2023/05/05/) - We first noticed Robert’s judgment falter in 2015 during a trip to Europe with our then-15-year-old son, Jackson. My husband has always had a great... - [My husband’s funeral unburdened my soul](https://hereandnothere.com/my-husbands-funeral-unburdened-my-soul/2558/2024/09/09/) - Long before my husband was admitted to hospice, I purchased a cremation package for each of us. Giving head space to your death feels terribly morbid… - [Searching for a better home for my husband](https://hereandnothere.com/searching-for-a-better-home-for-my-husband/2194/2024/06/03/) - During Jackson’s visit home, I realized, with some panic, that my husband, Robert, needed to be moved to a new memory care facility… - [Reflections on being human: Part 1](https://hereandnothere.com/reflections-on-being-human-part-1/1945/2024/03/04/) - Do we still matter if our capacity to solve problems and create gone? What does it mean to be human when we lose our minds? I think about these… ## Pages - [Home](https://hereandnothere.com/) - My husband, Robert, was diagnosed with Frontotemporal Dementia ( FTD ) in 2017. Frontotemporal dementia is not the same as Alzheimer’s; the parts of the... - [Contact](https://hereandnothere.com/contact/) - We'd love to hear from you. Please send us your name and email and we'll follow up within the next 72 hours. Want to subscribe to our stories? Click here… - [Subscribe](https://hereandnothere.com/subscribe/) - Sign up to follow Here & Not Here stories. We'll send you an email when we publish a new story...about once a week. You can unsubscribe at any time... - [Who We Are Losing](https://hereandnothere.com/who-we-are-losing/) - We created the hashtag #WhoWeAreLosing to generate a groundswell of recognition for the people we are losing to dementia. Our loved ones… - [Blog Author](https://hereandnothere.com/blog-author/) - My husband, Robert, and I moved from San Francisco to Petaluma (in Sonoma County) in 1995. We raised our two lovely children here. Our daughter, 34, lives in... - [All stories](https://hereandnothere.com/all-stories/) - All our stories The stories below chronicle our family's journey with frontotemporal dementia. Robert, our husband, father, and friend, began to leave us in... - [From the beginning](https://hereandnothere.com/from-the-beginning/) - The stories below chronicle our family’s journey with frontotemporal dementia starting from the beginning with our first story. Robert, our husband, father... - [Sharon Kirk's author page](https://hereandnothere.com/sharon-kirk/) - Sharon Kirk I started writing this blog as a way to express the myriad feelings (good, bad, and ugly) that came up as Robert's dementia progressed. This disease has made me question my place in the world, my marriage, and my way of being and interacting with the people I love. I'm not a writer ## Custom Layouts - [Post Sidebar](https://hereandnothere.com/neve_custom_layouts/post-sidebar/) ## Categories - [Before Dementia](https://hereandnothere.com/category/before-dementia/) - Stories of our lives before dementia. - [Grief](https://hereandnothere.com/category/grief/) - Stories of grief and coping with the grief of losing a loved one to dementia. - [FTD Symptoms](https://hereandnothere.com/category/ftd-symptoms/) - Stories that explore how the symptoms of FTD manifest and how they are experienced by family members. - [Diagnosis](https://hereandnothere.com/category/diagnosis/) - Stories about the diagnostic process and what to expect to arrive at an FTD diagnosis. - [Behavioral Changes](https://hereandnothere.com/category/behavioral-changes/) - Stories that provide more detail on the behavioral changes we experienced as Robert’s disease progressed. The symptoms of FTD are remarkably consistent across people, but how any one person’s behavior changes varies a great deal based on their culture, experiences, and life circumstances. - [Caregiving](https://hereandnothere.com/category/caregiving/) - Stories that provide some perspective on the challenges of caregiving or that offer tips on how to ensure the ongoing mental and physical health of family members caring for their loved ones. - [Stages of Dementia](https://hereandnothere.com/category/stages-of-dementia/) - Stories that offer some perspective or insight on the progressive stages of dementia. - [Care Plans](https://hereandnothere.com/category/care-plans/) - Stories that describe care plans and the medical interventions we will authorize for our loved ones. - [Death](https://hereandnothere.com/category/death/) - Stories that deal with the death of a loved one and the services that may follow after our loved one has passed. - [Memory Care](https://hereandnothere.com/category/memory-care/) - Stories that discuss memory care facilities, costs, advantages, and limitations. - [Recovering in Grief](https://hereandnothere.com/category/recovery/) - Stories of processing and recovering from devastating loss, and choices about life’s next steps. - [Dating](https://hereandnothere.com/category/dating/) - Stories about the trials and tribulations of dating when your spouse has dementia.