Wednesday, June 8, 2016

A Little History...
In the summer of 2013 my husband, Alex Houlding,  was diagnosed with Behavioral Variant Frontotemporal Degeneration. This was a disease no one I knew had ever heard of. It gets lumped into a broad category that falls into the "other dementias" label at Alzheimer's get-togethers and informational sites.

We had known something was going wrong with Alex for a couple of years before the diagnosis. I have learned in the years since that it is not unusual for this illness to be misdiagnosed, and that was certainly the case for us. Cognitive impairment is not the first sign that something is going wrong. It is other things that define this illness in its earliest stages, and  some of them are pretty weird.

Alex was losing things, forgetting steps in recipes, losing track of ideas and threads at work (not a good thing for a computer scientist), becoming less able to manage and focus on details, more aloof in conversation, more apathetic,  He was getting sloppy - shaving poorly, not paying  attention to his clothes or hair , and having difficulty reading maps and being geographically oriented when we travelled. He was not able to plan, not able to complete things, and strangely hyper-focused on other things, almost compulsively.

Many of these things might be signs of depression or "mid-life crisis." I made Alex go see his doctor and get an MRI. They reported that nothing was wrong, I was baffled, and I watched him get worse, and wondered why I couldn't get the doctor to take this seriously.

When we finally got to see a neurologist and then go through a neuropsych evaluation, the diagnosis was "mild cognitive impairment" with some unusual anomalies. When we finally got to the Mayo Clinic in 2013, doctors started talking to both of us, and zeroing in on the exact things that had been concerning me.

When we received the awful news (and I can still remember how completely sickened we felt), we asked, "What next?" The doctor shrugged her shoulders, and said, "There is no treatment. We follow you and you come back in 6 months." She gave us some pamphlets, listings of websites, and a DVD from a conference on TAKING CARE of someone with FTD.  I immediately wanted to run the DVD over with my car, and  I still have not watched it to this day..

We were both completely stunned - and Alex just said, "Boy you're really in the soup now. So we did what any right-thinking humans would do  - we went out for an over-the-top dinner, drank too much wine, and came home and hung onto each.

Most people with bvFTD have NO insight into their condition, and this is certainly the case for Alex.. The "in the soup" comment was one of the first and last times that I was certain Alex had any idea that something was wrong.  People like to tell me that's a blessing. When they tell me that I feel like punching them.


Of all the things I want to say on this blog, one of the most important to me is to point out that we are not dealing with Alzheimer's here. Continuity of personality just goes away, and the existential questions we face with this are almost always raw and awful.

I could catalog all of the changes, and sometimes I do in my head, but really, it just makes things worse. It's like forcing yourself to watch a video of a funeral over and over again. But before I can even talk about what we do every day, and how we do and don't manage,  I really need to write about the Alex that we all loved so very much before Alex 2.0 emerged.

When I met Alex, we were both working in the information systems area of B. Dalton Bookseller. I was just finishing up a degree in humanities, so naturally computer science would be the logical career choice for me. Alex had been raised in England, had a charming semi-English accent, a PhD in English (so computer science was the logical choice for him as well). I was the babe reading Proust on my breaks, and he was the hunk who could recite Wordsworth poetry. He was also training to run a marathon.

It was kismet. We "dated" for about 3 weeks, and moved in together after a month.

He has been my truest and closest friend, my most trusted confidante and advisor, the analytical balance to my emotional rants, the very involved father to our two children, one of the wittiest people I have ever met, and one of the most remarkably curious people I have ever known. No matter what we have gone through in our lives together, we had so many interests in common, and so many things that we loved to do together, that we always had great things to talk about and share. We went to the symphony together, we went to the kinds of foreign movies many people go out of their way to avoid, we travelled all over the place, hiked and biked, told stories, cooked and ate amazing dinners together, and just plain loved being together.

Alex was always more reserved and introverted than I, but he was a true romantic - writing and reciting poetry, tearing up at sad movies, and relishing every single moment of his children's growth (okay - maybe not EVERY moment of the adolescent years - but you get the picture).

He was physically graceful, a committed athlete, and self-disciplined to an extent I could barely comprehend.  He was a speed skater, a cyclist, a singer, a brilliant thinker, a tinkerer, and a person who simply loved digging into the details of things to understand them. He was a very good public speaker, had been an actor in college, and he swore like nothing I've ever heard before when he was behind the wheel of a car.    

When we travelled, we almost always argued about directions. He was almost always right.

Only the faintest remnants of these traits remain - but these remnants are what we work with every day, and try to nourish and promote every single day. Along the way, we have had moment of almost unbearable pain (sure - everyone says that, I know) but also some crazy days, some good laughs, some complete surprises, and a lot of love.

So the question for me is, "When is Alex no longer Alex and how on earth do I learn to let him go?"   And if what we do and what we have learned can help one other person who is trying to come to terms with this disease, I really want to offer our example as a "teaching moment," that is perhaps a little more palatable and immediate than a DVD you get at the doctor's office...  



  1. I've been looking and waiting for this blog. Thank you so much, Dawn, for your time, effort, and heart in writing it. Everything I've found before has been pretty much a one-time piece, except for Howard Glick's excellent blog about himself and Dan Browning's heartfelt series I read in Next Avenue about his wife, Elizabeth. My husband's first symptoms as far as we can pinpoint started in 2006, became more pronounced in early 2008, began tests to figure out what was going on in the Spring of 2010, and was diagnosed with the Semantic Dementia variation of FTD/PPA in early September 2010. Anything to help deal with this is immensely appreciated. Please keep writing. ❤️

  2. I am a single woman with bvFTD as of July 2010. I have no family so I get to be caregiver and patient.Your words were right on target

  3. Yes, keep writing, I too, am looking for guidance, encouragement...or whatever!

  4. For me, it is my 56 year old mother who was recently diagnosed with Progressive non-fluent aphasia FTD. We definitely have different experiences ahead of us (maybe, similar pain) with the variants of our loved one's disease. I now share a home with my mother, husband, and our four children. Keep writing.

  5. Thank you, Dawn - you have a wonderful way with words. My husband has FTD, behavior variant. I started a blog to have a way to document this journey, plus I was desperate for information on what others were experiencing. Could I share the link to your blog on mine for any visitors I might have? This is wonderful. I'll be following this. THANK YOU!

  6. Very well said. My Mom was dx at 48 with early onset Alzheimer's. Then 4 years ago at age 55 with FTD and PPA. I HATE that everything's about Alzheimer's. No one u derstands what other dementias are like or what my mom and our family is going through. We are in the process of filming a documentary, please go "like" the Facebook page for the film, Susan's Story.

  7. Dawn, Thanks for sharing your clear thoughts on this very challenging & deeply personal experience. I am also the spouse and primary caregiver for my wife, who was diagnosed at age 56, in 2013, with FTD - probably in the Cortical Basal Degeneration (CBD) sub-class, which is related, but somewhat different from bvFTD. CBD seems to involve less behavioral issues, but more physical motor issues than bvFTD along with loss of executive function - knowing what to do or say. I met her in college, and we married 6 months after graduation. We are looking forward to our 36th wedding anniversary this fall. We raised 3 successful children, who are all out on their own now, making their way in the world. We have a very close marriage, and have always been each other's best friend, spiritual partner and closest companion. I would like to offer 2 comments on your blog. First I don't want readers to be discouraged by your doctor's statement, "There is no treatment." More accurately she should have said, "There is no cure." But there are a number of things that can be done to manage symptoms and strive to maintain the best possible quality of life. A multi-faceted care plan (particularly at the early stages) should involve: 1. Medications to manage symptoms under the guidance of an experienced neurologist specializing in FTD. 2. As much physical exercise as possible becasue what is good for the heart is also good for the brain, and exercise helps to maintain strength, stamina, balance and coordination. 3. Intellectual stimulation - reading, puzzles, card games, whatever holds interest and challenges the mind. 4. Staying socially integrated - to reduce isolation and depression. 5. Developing & maintaining a routine - structure and habits help to maintain functionality as the condition progresses. Second, I'll try to respond to your question, "When is Alex no longer Alex and how on earth do I learn to let him go?" I would start by saying that even as recently as 1-2 years ago, I could not imagine myself writing this, but I've accepted the situation we are facing. Acceptance is an important word, and it doesn't mean giving up or giving in, but striving every day to maintain the best possible quality of life. My wife was pretty stable, declining very slowly for a couple of years but since the start of this year, the decline has accelerated. I've backed off the hours I'm working, to focus more time on her care, and we use home companions and adult day care to give me a little respite time, and maintain my career, becasue I'm too young to retire and we recognize that life will go on after this illness. That said, I do everything possible to support and cherish her making sure she knows she is loved, becasue she gave her all to our marriage and to raising our children and I know she would do the same for me if our roles were reversed. I take the role of a servant husband without complaining, and I strive to maintain a cheerful positive attitude, becasue she mirrors what she sees, and it helps us both cope. I'm not a perfect caregiver, but I'm compassionate with myself, and when I make a mistake or realize I could have done better, I try to acknowledge it and learn from the experience. It's become easy for me to say, "I'm sorry, I shouldn't have done that. This is hard for both of us. I will do better next time." To give those words meaning, I spend a lot of time reading and learning from other caregivers. I'm deeply grateful for the brave families that have made our experience a little easier becasue they shared their experience, and especially those who worked and are still working at breaking down the stigma attached to all forms of dementia. I recognize, based on the experience of other caregivers that that a time may come when I cannot provide the level of care that she requires and I'm committed to what is best for her as our situation evolves. May you be blessed with grace & strength for the journey ahead. PEACE+

  8. Thank you Dawn. Closest to my heart was your comment on when we admit to ourselves that thx person is no longer the person we have known and that it is time to let go. I struggle with that ALL the time, over and over again, because my husband and partner of 43 years sure looks like himself. (68 years old. Diagnosed with PPA/Semantic in 2009. Now very obvious dementia, along with minimal comprehension and limited speech.)