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Snapshots of Dementia: And So We Begin

Posted by on May 21, 2020 in Dementia | 86 comments

snap_shotBefore beginning a Hunt, it is wise to ask someone what you are looking for before you begin looking for it. —Winnie the Pooh

“By the time they’re diagnosed, most people with dementia are already mid-stage in their disease just because the diagnosis process is so long,” the facilitator told our class of dementia caregivers. “I would say on average, most people take three and a half years to get diagnosed.”

No one else looked surprised by this information; they’d no doubt heard it before. But it shocked and energized me.

By the time of this class (January 2020), I knew my husband suffered from a dementia called frontotemporal degeneration (FTD). I knew FTD is considered a rare dementia (only 10-20% of people with dementia have FTD), is typically an early-onset disease and is often misdiagnosed. I knew that in our case, I’d suspected a problem for more than five years and had actively pursued a diagnosis for more than three. I knew that during that pursuit, my husband had lost three jobs in a row and given away more than $25,000 to online scammers while two neurologists and a neuropsychologist were still telling me he had no significant cognitive issues.

But really? The average length of time for a dementia diagnosis is three and a half years? Even for someone without a rare type?

Some of the other dementia statistics stagger me too. Across the globe, experts anticipate that dementia rates will double every 20 years, with an estimated 81 million cases by 2040. Accurate diagnosis matters because the treatments for dementia vary with the disease. In the case of FTD, some of the medications used to treat other disorders can even cause harm.

Accurate diagnosis also matters because of pain. I don’t refer primarily to physical pain but to the mental, emotional, financial, and spiritual anguish that touches so many families as dementia rakes its ugly claw across their lives.

And so I write. For my husband, who remains largely unaware of the depth of his cognitive issues. For my children, who face the pain of watching their once-vibrant father fade. For other dementia families whose lives have been tragically and permanently disrupted. For my fellow caregivers, who need to know more than I did when we began this journey down a path we did not choose. And for all those who need to see how this set of diseases leaves its ugly imprint on the lives of individuals created in the image of God.

Although I’ll try to provide helpful links, I’m not a doctor or researcher, so please don’t look to this blog for medical advice or counsel. What I hope to share here are small glimpses, snapshots as it were, of dementia as experienced by our family. As time goes on, I may include others’ stories as well.  Because I’m a caregiver and sole provider for my husband and me, my posts may not come as regularly as I’d like.

But for now, this blog is something. And something, as I have learned, is always more than nothing. I hope to share more soon.

Do you have a family member with dementia? How long did it take to obtain a diagnosis? Feel free to leave a comment or a prayer request. Your story matters. 






  1. Thank you Marti for stepping into this and sharing, I know that it isn’t easy but I hope and pray it will be a positive outlet for you , just as it is informative for us.

    • I know another blog that blessed me (and thousands of others) despite how hard it was to write. Grateful for your friendship and presence.

    • Marti, bless you for taking the challenge. I wish I had something like this to go to when I was caring for my mother. Thank you so much.

      • Shirley, I’m praying the Lord will make it something that helps others. Thanks so much!

  2. For all of us who knew the vibrant and fun-loving Tom, I cannot imagine the agony you endure watching this deterioration firsthand. I am so very sorry and I love you both.

    • You know we love you too! He is still fun-loving. Just “never the same.” Hugs!

  3. Marti, my mom suffered from Alzheimer’s for a number of years before she was officially diagnosed. It broke my heart to watch her gradually fade away.

    • I’m so sorry, Sharon. It is truly heartbreaking, frustrating, and lots of other words as well. Thank you for sharing even through the pain.

  4. Thank you so much for sharing.
    I miss you guys so much and pray for you all everyday.
    I love reading your words, please stay in touch.

    KC and Toby

    • You’re so great. I remember wanting to talk to you about this so many times when I didn’t know WHAT was going on, and I should have. I took out your phone number so as not to share it with the world. We will stay in touch!

  5. Thank you Marti for sharing and taking this blog on. It will be helpful to do many people. I will be praying. Love you two.

    • You know we love you too. Thanks for your faithful presence in our lives.

  6. We love you guys! We journey together with God as our Guide! We thank You Lord for all of Your blessings! Keep guiding and protecting and providing for this precious family! Amen.

    • Thanks so much, Pastor Jav. Grateful for the way God has knit our hearts together.

  7. My grandfather struggles with dementia. Maybe your blog can help me to understand it better. Thank you for writing! Love you, Mrs. Marti!
    – Brandi Roberts Ornelas
    (From Never the Same Missions)

    • Love you, Brandi (as if I could forget you)! I’m so sorry about your grandfather; it is a journey that impacts the entire family. HUGS!

  8. Thank you,Marti, for writing of this journey you did not choose to embark on. I am already encouraged. Praying for you as you seek the wisdom of our Father in what you write.

    • I appreciate that prayer so very much. Hugs and love to you in your journey as well.

  9. Thank you for writing and sharing!

    • Thanks for being an always-friend!

  10. Sending love your way

    • Right back atcha! Thanks again for your love for Tom.

  11. Marti, I will be sharing these as you publish them in the hopes of helping others. You are not alone. Far from it. Call anytime. I love you.

    • I do realize that (not alone) although I have certainly felt that way more often than not. Grateful for your continued love, care, and prayers.

  12. Dear Marti, thank you for your transparency and willingness to share for the benefit of others.
    This is indeed a difficult journey (certainly an understatement!) and I promise to be part of the army of those praying to uphold you and Tom. Much love, my friend.

    • And you now about difficult journeys. Thank you for your faithful prayers. I do count on them and on your friendship!

  13. My grandmother and my Aunt Catherine and Aunt Marilyn (different sides of the family) all suffered from some form of dementia/ Alzheimer’s. It was so difficult to see these vibrant ladies suffer in such insidious ways.
    I will keep you and your husband and family in my prayers. May you be blessed with the courage that only God can give.

    • I’m so sorry, Monica. Watching the decline is beyond heartbreaking. Yet another way God has connected our lives. Grateful for your prayers!

  14. Thank you Marti for sharing this journey that you and Tom are on. I can’t imagine the roller coaster of emotions that you and your family are experiencing. I will continue to pray that you would be strengthened by those prayers and find rest and peace in Christ..

    • Thank you so much, Kathy. I’m grateful for those prayers, always!

  15. Thank you, Marti. You have always been a helper. Your blog will help many others. II continue to pray for your family. They are doing so well. Tom is so lucky to have you as his partner in life.

    • Thank you, Lynne. I do believe this is a calling and although I often “kick against the goads,” I have a holy privilege as well.

  16. Thank you so much for sharing! This is educational, but for me, more of a support and knowledge of how others deal daily. I’m praying for you and your family.

    • Thank you so much. We are grateful!

  17. My husband received the diagnosis of bvFTD in fall of 2019, after about 5 years of symptoms really beginning to present and us chasing a diagnosis. Unfortunately due to his young age (37 years) and relatively high functioning and fluctuating cognition, many doctors question it because he doesn’t “fit” what they think is FTD and early-onset dementia.

    While it’s a major struggle to get the medical community to believe us, his family and friends are questioning the diagnosis too because they think he is “okay” due to not seeing him often (especially now with Covid 19) and not living with the daily changes and uncertainties that our lives have become.

    • Kristen, these are the stories I hope to tell. I truly believe Tom has dealt with this for many more years than any of us suspect. Thank you for taking time to comment; I am praying for answers and strength for your journey! (Also: Our oldest daughter is a Kristen!)

  18. I love your writings, Marti. Thank you. Most all our lives are touched in some way these days by dementia. When we struggled thru the daily thing once called living with our dear friend as he battled this horrible disease, we were devastated. Your writings are informative, encouraging and comforting. Prayers for you and Tom.
    Much love,
    Kathy Morgan

    • You’re so kind. It is a challenging journey, but God gives so much grace! Thank you for the prayers. Sending love right back!

  19. Hi, Marti, my Dad was just diagnosed with Alzheimer’s. It took about a year and a half and a few doctors before we were referred to someone who started him on the testing process. I’m so sorry you have to go through this with your husband. Praying for you and your family.

    • I’m so sorry to hear this, Dana. I wish I had known to pursue this at the beginning as hard as I did closer to diagnosis. Prayers for you too!

  20. Because my mother was a brilliant and determined woman, it took ten years to understand she had Alzheimer’s. Ten years. And I worked with her nearly everyday of this ten years. It was the hardest thing to watch my mother leave us bit by bit and harder still to watch my dad try to hold on to every one of those bits. Unless you’ve gone down this path you cannot comprehend.

    • Aleta, one of the problems with diagnosing Tom was truly that he started out so smart! He wasn’t aware/trying to hide anything, but he kept performing well on various tests, which was beyond frustrating when it seemed like his life was falling apart. I haven’t had your exact experience, but I do know the pain of watching a dear one become less and less. Thanks for your heart and understanding.

  21. Your writing is beautiful, Marti. Even as you capture the anguish and ugliness, you display it in a way that inspires awe. I am praying for you and your family.

    • That is one of my prayers, Jessica–to portray truth in a God-honoring and, yes, beautiful way. Thank you for those eyes and heart, and especially thank you for the prayers!

  22. Thank you for sharing your journey, even as painful as it is. My mother-in-law had dementia and watching her decline each day was heartbreaking. Being able to hear what others are going through can be so encouraging even though it doesn’t change the diagnosis. The support for caregivers is so important. I love you and Tom and will pray for both of you as you make your way through this. You are a blessing, my dear friend!

    • I’m so sorry about your mother-in-law, Ronda. I’m in awe of your journey as well, and grateful to be reconnected. Somehow these BBC friends continue to mean a great deal to us! Grateful for your walk and your life.

  23. Love you, friend. Thank you for sharing your journey. It’s important work–both the living of it and the writing of it.

    • What a beautiful way to put it. But then, I would expect nothing less. Grateful for your friendship and encouragement. Always.

  24. Marti, you continue to use your gifts in so many ways. My dad had Alzheimers and my mom dealt with it everyday. He was a proud man and it was hardly spoken of. I wish that had been different.

    • I had no idea, Melinda. What a challenge that must have been. Tom and I agreed that we would speak about his dementia. Honestly the years of not knowing and thus not saying anything were the most difficult for me. You are a blessing, and I know God will use this experience as you bless others!

  25. Marti, Congratulations on STARTING! I look forward to reading what your heart pours out.
    I love – read write pray- its all we can do sometimes.
    May God use this as a portal of love from God to you and from you to others.
    I love you and your wonderful heart.
    Cathy Chan

    • Thank you so much! This is my regular writing website, but it’s in need of updating. Read. Write. Pray. is still my life, though. I loved the way you shared your and Dickson’s faith journey with so many. Thank you for sharing in ours!

  26. So I went to visit my MIL in Ohio, she had MD appts and I happily said ‘I’ll go with you’. Went to neurologist. I was totally unclear what was going on and finally asked, ‘what are you seeing Ms. Sudie for?’ He replied DEMENTIA. I looked at Bobs mom and knew she had been hiding this, . .maybe not knowing what to do with that info. . .our lives changed forever. . .home care with 24 hour nurses, assisted living, dementia memory care facility, palliative care, hospice. . .it was slow. . .

    • People have all sorts of reasons for hiding this disease and, perhaps even without realizing it, keeping others unaware. Praise God you went with her that day! I’m so sorry for the long and difficult journey but glad she had people who loved her.

      • Marti, my heart breaks fir you. I had no idea. Tom is always so happy. Prayers fir both of you. Millie and Gene Moore

        • We moved here for family support and so I could come home to be with him and give him the best life possible. Our church is a big part of that! Thanks for your kindness and prayers.

  27. Marti, thank you for this blog post. We are praying for Tom and for you. Our family watched Parkinson’s Disease evolve into a complete change in my dad’s mental capacity. It was hardest on mom and if I’d had more information, there are a lot of things I would have done differently. The journey is heartbreaking it only helps when you can count on others as support. We love you guys. We care and we will continue to pray.

    • Thank you so much. I wondered at one point if Tom had Lewy Body Dementia (a Parkinson’s-related dementia) because he has many Parkinsonian-type symptoms. I remember your dad as laughing, caring, and loving; I can only imagine how difficult this was for your sweet mom. Thank you MUCH for the prayers!

  28. Thank you for sharing. Larry’s brother was not diagnosed for a long time and then of course there was the denial. I think it is hard to accept at first also. Our prayers are with you and Tom.

    • Thank you so much, Debbie. That denial is tough on everyone. I think for Tom, his life had changed so much by the time we had a diagnosis that he couldn’t really deny it. But he did tell a neurologist last fall that he was really fine and that he was fine, had a few memory problems but was “mostly there because of my wife.” When the disease talks, it’s not always the most accurate. Love you!

  29. Blessings, Marth. Thank you for writing. I know this will be helpful far beyond anything you can imagine. I will be sharing this with others who will find it informative and helpful. Much love and prayers for you, Tom, and your amazing family.

    • Thank you as always Ms. Dill! And thank you for keeping that red pen in check. Always grateful for love and prayers.

  30. Dearest Marti, you are a blessing to so many by sharing this journey and the difficulties that lie ahead. Prayers are with you and never forget I am only a text or phone call away. Love you!

    • I do count on that fact and am grateful for your much love and many prayers. It helps also to know you have walked a similar road with such love and grace. HUGS!

  31. Marti, I have prayed as you walked this path and now pray as you turn your path into a way to light that same path for others. You are a gem. I love you beyond words.

    • Your prayers and words of blessing have ministered to me so much. With all we have gone through, we have also seen His path laid before us. I know prayers paved that way! Hugs and love always!

  32. For my family, this wasn’t an early onset situation, so my mother’s age made our discovery not terribly surprising–but so much about the change in personality and the inconsistency of its effects did surprise us. Marti, I thank you for writing, and I pray God blesses not only the readers, but the writer.

    • I’m so sorry you went through this experience with your mother, Laura. I feel grateful Tom did not develop this in his twenties or thirties as some do (including the husband of a commenter here). Blessings back!

  33. Your wisdom will help all of us to pay attention to our love ones for clues to the future. Thank you for your bravery in sharing

    • You’re so kind, Robin. Thank you for your love and understanding!

  34. Thank you Marti! God has given you a wonderful gift of expression through the written word. Pat was diagnosed with Parkinson’s a couple of years ago, with some cognitive decline. They now call it Parkinsonisms because there is a broad spectrum. It is fairly early days still but I have also experienced the “showtime” ability once in a doctor’s office. This was a word used in a caregivers support group talking about this very issue not one I came up with.

    • That’s a great word for it (I’ve heard “showing out,” too), but I’m so sorry this has touched your family. I will be praying.

  35. Hello Marti! My late grandmother suffered from dementia. My mother was her caregiver before she had to admit her Mom to a nursing home who specialized in the disease. I remember many phone calls with my late mother. Moments of tears, sadness, helplessness, fear, and anger as she witnessed the decline of her mother. When I was home on leave from the military, I hurt inside when I saw who my grandmother had become. I saw one person who would be the normal grandmother I knew, and then, see the other person I didn’t know. So, I pray for comfort for your family, for the peace of God that surpasses all understanding to rule an reign in you and your family’s hearts as you walk this path with your husband. God is in control!

    • Aww, I’m so sorry your family has been touched by this as well (even though I’m thankful to hear from you). Grateful for those prayers; they mean a lot.

  36. Praying for you during this difficult journey!!! Thanks for sharing even though it is so hard. Living with someone with dementia is hardest on those closest who see that person slip away. Two of my dear friends had dementia ( one who volunteer for me in activities for 27 years and the other was a coworker who worked with me )…..What helped me is to take them in the moment, talk to them about the past not expecting them to relate to the present and realization that even when they progressed in the disease that it didn’t matter if they forgot who I was but that I remembered who they were! I found singing hymns during my visits helped as even when they didn’t know the words they hummed along or attempted to sing the melody without words using sounds. Music is magical with those who have dementia. Praying our dear Lord sustains you and that you are able to find extra support for respite for yourself when the times get harder. Keeping you in my prayers daily!!!!

    • Music has always been important in Tom’s life, and that hasn’t changed although his ability to play trumpet has. I’m sorry you went through this with your friends, but it sounds like you were a wonderful friend for them! Grateful for the prayers.

  37. I know for my Dad we noticed a rapid decline after my Mom died. On a visit I reviewed his checkbook and was astonished to see the confusion he was having in keeping the balance and subtracting. I have another sibling who lived closer and she was noticing other symptoms. We finally had him tested and the CAT scan revealed narrowing in the brain channels and a diagnosis of Alzheimers. I would say it took a year to 18 months to diagnose it. Symptoms may have appeared earlier that we didn’t notice.

    Thank you for sharing your journey, Marti. I am sure we can all grow in knowledge, compassion and strength as we walk with you.

    • This seems to be common in people with dementia, elderly or otherwise, that a change tends to move them into a decline. I’m grateful for your loving care for your dad. Thank you, Lynne!

  38. Thanks Marti…I pray for you in your many faceted levels of responsibility and care. (And on a lighter side…your blog was surprisingly written without the inclusion of an elipse.)

    • Thank you, Ross. I used lots of ellipses but my editor removed them. #not

  39. Marti, thank you for sharing this difficult journey. I have friends who are dealing with loved ones with dementia now. You will help many people with your openness and writings.

    • Aww, I appreciate your kind words. I know you will be a blessing to your friends as you are to me. Thank you!

  40. Marti, I love your transparency and look forward to reading about your journey with Tom. Dementia and Alzheimer’s are two of the saddest diagnoses imaginable to me. Watching your loved one fade away day by day.

    As you take life one day at a time, may God infuse you with strength, wisdom, grace, and love beyond what you can imagine.

    • I can hear you speaking those words of love and grace over me, Sharron. Thank you so very much. Lord, let it be so.

  41. Bless you, Marti, for having the courage to tell this story. Your story. Tom’s story. Telling our stories is holy work. We love you and stand with you and Tom.

    • Thank you for the reminder of truth and always for your love and prayers.

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