"I am so very tired of being all alone here," said Alice.

 Ugh.  I'm just not sure what I'm doing to myself!  It is beginning to feel like I'm on a roller coaster. Actually, it's been a roller coaster for a while.  But after the recent high, having realized that my life could be better, that I can have fun - I can relax and laugh and feel light-hearted - having experienced some hours of time where life feels good - it makes all the other hours of the days, weeks, months feel that much more low, more lonely.  It is making me question what was I thinking?  Did I think this one new friend was going to save my life?  I can't put anyone in that position.  No one wants that!  Plus, it would destroy a new fragile friendship to depend so much on someone I really don't know that well.   My epiphany that I still have life to live is now making me feel more alone.  The moments of laughing out loud, forgetting for a little while about all my caregiver duties and frustrations, having random discussions, I don't know - it felt very normal - NORMAL!  I don't think I've felt so normal for a long time.  So I rode the high for awhile, but now am riding a new low - because I can't live the normal life.  I can taste it - have glimpses of it - have moments - but now I miss it more.  

So lucky me!  I have now made myself reach a new low.  And what do I do now?  Stop texting with my new friend?  Stop meeting for breakfast every so often?  So that I don't suffer the new lows?  Or do I make the most of the new NORMAL moments?  Find other ways to create some normalcy in my life to help stay on more of a high for longer?

This is all so ridiculous!  I truly feel like I am down the rabbit hole - stuck down there!  

I think I can not give up this few hours of normal each month I've found.  It makes me want to keep on living, trying to make my way through this FTD journey.  I did start some counseling with a small practice specializing in caregiver stress.  I think it will be good.  It also is one of those things that made me feel very hopeful for a few days - then the low started again.  AAARRRGH!  A roller coaster ride for sure.

I figure if I can time the counseling with meeting up with the new friend juuuusssst right, I might be able to stretch out the highs a little longer before the lows trap me!

Man oh man.  A crazy ride.  23 years since he was fired from the first job, 11 years since diagnosis.  It has been suggested that we have ten to fifteen years to go!  So I'll be 80 and he'll be late 80's!  I don't want to wait to have some enjoyable days in my life - I may not get the chance in the future - so I'm going to grab any opportunities that come up to feel a little normal, smile alot, laugh outloud - and be a better caregiver because of it.

Take care, all.

"Who are you?" said the Caterpillar. "I - I hardly know, sir, just at present."

 It seems over the last couple of years, I have truly lost sense of who I am/was/will be.  As my husband has declined and I had to quit work two years ago because he couldn't be home alone for so long, I have been identifying myself only as a caregiver in my mind.  I've already grieved the loss of who my husband used to be.  I had years of patience, years of hopefulness that I could do this.  But over the last year, I find my patience is dwindling; my feelings of resentment rear their ugly head a little more often.  As Dave requires more of my direct supervision and help beginning in the spring, whether it's with toileting, showering, laying out clean clothes each day, taking his medication, eating his breakfast, making his lunch, making his dinner, I think - what about me?  I feel guilt for feeling resentful, guilt for sitting on my back porch at night once he's settled in bed and feeling the tears well up, guilt when I meet a friend for lunch while he is at his adult day program three days a week, guilt for asking what about me?  Eleven years ago, I thought I was superwoman - that I could do this - because he probably had only 8 to 10 years to live.  But for the last year, recognizing he is pretty healthy over all, and I've been told he could go on another 20, I have been stuck there for awhile, in a state of mind that is "poor me".  I don't like this person I've become.  I think I am grieving the loss of "me" now.  My husband's symptoms started over 20 years ago, with diagnosis 11 years ago.  And it could go on for 20 more ??  His has been slowly progressing over that time.  I'm the last of the group of four that met monthly for lunch beginning about 10 years ago - we all had husbands with FTD.   Two of the group lost their husbands over the first five years we would meet.  The third person just lost her husband about a year ago - I'm the last one!  I guess we won the lottery spot on the bell curve of how long people can live with this disease!  And that's another thing I feel guilty for - how can I even think that???  Anyway, I don't know if I can do it for 20 more, not with how I feel lately.  I can see why caregivers "burn out" - and perhaps get sick and die before their spouses.   

I recently had an epiphany....a couple of months ago, I was on Facebook, looking at a page about the history of the town I grew up in and lived for another 30 years as an adult, and saw a comment made by a person that had the same name as someone I worked with at the little library across the street from where I grew up - hadn't talked with him in probably 48 years?  I reached out to him - it was him!  We texted a few times and agreed we wanted to continue the conversation and catch up.  So we've met a two times over the last couple of months - and talked about everything under the sun - except FTD and the pains of caregiving.  I did not get pitiful glances from him.  I didn't think about my caregiver role for those few hours.  I didn't feel sorry for myself.  It was kind of like getting flowers from someone for no reason - it lifts your spirits - boosts your energy - makes life a little better!  Made me realize - wait a minute - there are things I can do for me.  I can start taking care of myself, and STILL take care of Dave.  I can do things just for me - and still take care of Dave.  I deserve to have a life besides caregiving.  In fact, I'll be better at taking care of my husband if I find some things to do that I enjoy, some people to talk to about life instead of FTD.   For a few days, I've been mulling it over - feeling hopeful for my future - feeling like I do still have a life to live - it is not over, even though it sometimes feels like it.  I'm allowed to enjoy myself, treat myself, find something I enjoy doing - and I shouldn't feel guilty about it!  In fact, doing things just for me, I find I am more patient with my husband.  I don't well up with tears many evenings once my house is quiet.  I don't feel resentful having to assist my husband with so much daily living skills because I'm making sure I get a boost for myself. 

I still have life to live, people to meet, adventures to have.  I still have part of my story to write!  My obituary some day won't say "she spent the last 30 years of her life as a caregiver to her husband" - that will be one of my roles, and certainly my most important, but I have more to do.  It has helped so much over the last month to lift my spirits and to help me see that things are OK - that I can do this, as long as I take care of me too!  So simple - and so true.

I hope anyone reading this is taking care of themselves - and not feeling guilty for doing it - not feeling guilty for sometimes hating their life - because they can find a balance by living their life, continuing their story.  

Take care.  

It's been a while . . . . .

 So it's been five or six years.  Where to begin?  My husband is still chugging along.  It's been eleven years since diagnosis, and twenty three years since I first knew something was wrong.  

Eleven years ago when I started this blog, I felt optimistic - positive - that we would make the most of each and every day because the days were numbered.

For the most part, I have lost that "positive" attitude.  I am pretty much a full time caregiver, and I know some people consider it a blessing.  I think I did in the beginning - but I was able to have a life along with taking care of my husband.  I have lost my footing in the journey - I have tumbled down the rabbit hole, and most of the time just feel very sorry for myself!  I hate feeling that way - it is not me.  But I fear it has taken over MY life.  I think starting up my blog again might help me develop a new attitude.  Because I certainly won't make it with my current attitude!  Ugh.  

It seems forever ago that I had a "support" group of three other women, all with spouses with FTD.  As I feared, I am the last member of the group.  I know my husband's progress has not been typical.  But there's a bell shaped curve - we just happened to be at the extremely long end of things. 

He has over the last few years been diagnosed with five or six auto immune diseases - but no normal corresponding symptoms.  It was all diagnosed through blood work.  It was explained to me that many of us could have the same results from bloodwork, but we have never been tested for it, that millions of people have autoimmune diseases, but it isn't causing them any problems.  He is VERY slow in his walking - uses a cane mostly for taking a step up or down, and sometimes for balance.  He has the BRCA 2 gene mutation - indicating a higher chance of cancer.  We know that only because my daughter was diagnosed in 2021 when her baby was 9 months old - hers was a result of the BRCA2 gene mutation - we got tested to see who she got it from - it was from Dave.  Plus he supposedly has Paraneoplastic Syndrome, which can indicate inflammation/cancer in the body.  But so far no cancer.  He has no memories of our marriage, our children.  He knows his kids - knows me - most people who meet him think he's a sweet old guy who is very nice - what they don't know is that after "Hola!" and a few more words in Spanish, he really can't go any further with a conversation.  Other than when someone is leaving, he'll say "Hasta la vista, Baby!"  I have him attending an adult day program three days a week, which he likes going to and I get a break.  But he needs some supervision in the shower, with clean cloths, with his meals.  I have a lock on the fridge for two reasons - he would be in it all the time looking for food, and also was constantly leaving it open.  He leaves the water on.  He mostly just watches The GameShow Network on TV, or Big Bang Theory - I do like Big Bang Theory, but he has to have seen every episode many times!  He also has one hand held old style solitaire game that he plans throughout the day until he wins.  I don't even know how old it is!  Maybe ten years?  I better see if I can find a replacement before it stops working!  

He still knows his social security number, birthdate, where he lives, etc.  I also asked him just a day or two ago if he remembered the sign language ABC's - he just to be fluent years ago as he had two or three deaf clients when he was a social worker in the late 70's.  HE COULD DO ALL THE ABC'S in sign language, but he doesn't remember any of our adventures as a young married couple, when our kids were born or his past jobs.  AAAARGH! 

The lack of empathy is the hardest.  Dave was the middle child of seven children.  He is now 74 - he is the only one of his brothers and sister to make it to 74.  His mother died about a year and a half ago - I was in constant contact with his brother to find out how things were going - she was 97 - but Dave's only comment was that he didn't really know her any more, so he didn't feel real sad about it.  When our daughter was diagnosed with cancer and was going through chemo and several surgeries, he asked me - "What is the big deal with Kristin having cancer?"  I was stunned - reminded him his sister had died of cancer at 38, one of his brothers had died of cancer at 54....I don't understand.

Sorry if you happened to be reading this as I know it is a lot of word salad.  I expect to get on here more often for my own sanity and to have a record of what these next years are like.  I have a feeling Dave is the energizer bunny that will keep going and going and going - that I'll be the one who's batteries run out first!

As Dave would say, hasta la vista, baby!

Keeper of my husband's memories

It has been awhile.  I didn't contact the Cleveland Clinic for a second opinion.  I felt I needed a break from FTD, or whatever this disease is.  I accepted that this is my life, this is how it's going to be, that Dave is probably going to outlive me, so just get on with it.  Well, that didn't work so well.  I tried pushing all thoughts of FTD aside, tried to stop thinking about it a majority of the time, tried to make all this my new normal and tell myself that many, MANY people have it much worse than I do.  And really, is my life so bad?  Does it really matter what disease he has?  This is how it is!  This is the hand I've been dealt.  I'm going to turn it in to a royal flush!  Not.

I got tired of telling myself every day that many people are worse off.  While yes, that is true, it didn't serve me very well to negate the continued grieving and loss I feel.  I found myself feeling quite alone all over again, overwhelmed at facing what the rest of my life will be.  I was constantly chastising myself for not being patient enough, not trying hard enough to draw the old Dave out, not being happy with the facts of my life.  And once again, I found myself so disappointed in my attitude on a daily basis.  Especially since things aren't so bad, right?  Caught between a rock and a hard place with no way out.  And sick of my whiney thoughts about poor me. 

Dave's gait is getting worse - very very slow.  He is having daily problems with short term memory.  Comprehension of what is asked of him seems to be more difficult.  He had a wound on the inside of his leg just above his ankle he showed me early in November on a Friday at 5 pm.  He wasn't sure how he got it or when it started.  But it was the size of a quarter, very swollen, and obviously infected.  We went to Urgent Care - got an antibiotic.  Went to the emergency room Sunday morning because it was looking worse.  Long story short - it started to get better, shrunk to the size of a dime, but around Christmas had blown back up again.  Had to go to the wound clinic every other week until March 27 when it was finally closed up and healed.  It was a venous ulcer caused by venous insufficiency.  Bad circulation in his legs.  So he gets to wear compression knee highs now.  It's been a fun last few months.  We saw the neurologist this week.  He wants to do another MRI - it's been three years since the last one.  I'm happy to have it done to see what's happening and what further involvement there may be of different areas of the brain.

We are headed to Montana for a trip to see his family in a couple of weeks.  That is where we met and got married.  It's our 40th anniversary in May.  His mom, at 93, has developed some serious dementia, so I thought it would be a good time before he can't travel and she gets any worse to go on a trip.  I may regret it, but for now I'm looking forward to it.  I have accepted that I am Dave's caretaker and the only person looking after his quality of life.  I'm the keeper of his memories.  I'm his working brain, basically.  He wouldn't think about going to see his mom - so I need to think of it for him.  He wouldn't know how to book a plane ticket, or arrange for us to stay somewhere.  So I need to do it.  And while sometimes it drives me crazy to have someone so dependent on me each and every day, I know he would do the same thing for me were the situations reversed. 

I lose a little more of him each day - moments in our lives he doesn't remember - sometimes weeks or years.  And yet he remembers that when he smoked for six years in college and a couple years after,  he smoked Kools!  I have been going through photos and when I find certain ones with a particular memory attached to them, I show it to him and tell him the story behind it.  He says he is a happy person.  I would call it content.  He can sit and watch TV for hours, doze a little, and never say a thing to me.  And that's ok.  But every once in awhile, I am compelled to block his view, and do some crazy weird dance in front of him to what ever music is playing on the game show or commercial.  At first he acts like he doesn't notice me - but I keep going!  And finally he smiles a little and tells me I'm weird - and he's right!  That's more like it!  A smile that reaches his eyes!  I love it!  I've taken to doing it several times a week.  It makes me laugh.  I need all the laughter I can get.

We're going on five years since diagnosis, and seventeen years since he was fired from his job he had for 18 years.  It's been a slow progression, a simmer rather than a rolling boil.  The diagnosis is changing.  We will see what is in store.  I'm counting down the months til full retirement from work - it's about 47 months now.  That's less time than I've been keeping this blog.  I hope Dave continues to be able to maintain so I can continue to work til then, but I also can't wait to not go to work every day!  I have two grandchildren now - they are far away, but with technology I get to see clips of them most days.  It literally makes my day.  And I'm hoping they will be coming over the 4th of July for a week.  It should be great fun, and something to look forward to.  I find the best way for me to get through the day is having something great to look forward to and be excited about.  I tend to flounder and feel sorry for myself if I don't have that future event with some fun and meaning to look forward to.  Not that taking care of my husband doesn't have meaning.  It most certainly does.  But it doesn't provide for much fun on a daily basis. 

I hope all reading this are doing well with whatever their journey is.  I'm still figuring mine out.  It seems very fluid.  Certainly not a straight line for very long.  Never know what might be just around the next bend.

Chapter 51 Life goes on . . .

Life goes on.  I've done more research, talked with other people, felt supported through all this confusion.

So it's been about three months since the formal change in diagnosis.  Dave has been on the Methotrexate for awhile now.  It has made his psoriasis go away!  No more itching!  But other than that, there has been no miracle change - no sudden recovery.  I didn't think there would be, but a small part of me held out hope.  At this point, if indeed his dementia is a result of an autoimmune disease, this may help prevent further deterioration.  But it makes me sad to think of him stuck where he is for who knows how long?  I guess it's just sadness for myself, though.  Because he still doesn't think anything is wrong with him.  Which is good, right?  I try to find the great side of this - perhaps our journey won't include some of the awful situations that some of my FTD friends are experiencing.  Maybe he won't end up in a wheelchair, or not being able to swallow.  Maybe he will maintain continence.  I need to dig deep and find that patience I used to have, the gladness I used to feel at being able to care for him.  Sometimes I feel a part of me is lost forever.  There seems to be more memory loss.  He doesn't remember how we met, when he proposed to me, the day we got married.  We don't have conversations, except about the grocery list he makes each day.  The things I'm missing, the companionship, lively discussion, laughing together - this has been going on for so long that I'm not certain if this is just a normal part of an aging marriage, or truly a disease?  I find myself questioning so many things.  I've thought about reaching out to people he knew long ago in college and right after college to find out what he was like back then.  Or did I create this awkward living arrangement because basically I'm hard to live with and expect too much?  I have to remind myself that he has significant brain atrophy; that he has a very very slow gait; that he still needs to be reminded that TV shows are made up stories with actors; that he isn't interested in others' lives; that he doesn't comprehend some simple things; that he has no social graces anymore.  But wait - alot of people tell me some of these things are just like their husband!  (I've suggested to a couple of people if their husbands think TV is real, they better get their husband to a doctor!)  I know most of what I see in Dave isn't normal.  And I don't think that much of a monster wife to have caused enough trauma to bring this all on! 

I've read about some instances where a spouse has bvFTD concomitant with autoimmune disease.  I asked our neurologist about this.  He feels strongly that Dave's symptoms have been going on for so long and in some ways are atypical that it is the central nervous system autoimmune disease, and not FTD.  But he said he can not be more specific than that.  He fully supports and encourages a second option.  Some people offering support have said - if it looks like a duck and quacks like a duck - for all intent and purposes, it IS a duck!  It's weird, because obviously his symptoms are caused by the atrophy in the frontal and temporal lobes of the brain.  The question is what is causing the atrophy?  And FTD can only be confirmed by autopsy.  So how can FTD be completely ruled out?  I guess another question for me is why am I so insistent that FTD be a part of the diagnosis?  I think it's because I'm invested in that.  Three and a half years invested.   I don't know.  I vacillate back and forth between thinking I'm an idiot to even question it, and of course I want a second opinion!  A significant diagnosis has been changed after three and a half years! 

I am contacting the Cleveland Clinic to see about scheduling an assessment there for a second opinion.  I'd like confirmation of one or the other, or perhaps evidence of both.  I'd like to have someone answer my questions about what causes this autoimmune disease and perhaps a little more definition, maybe more detail.  I'd like to know what to expect, what to watch for.  And I've been putting this off for a couple of weeks.  This is Saturday, July 21.  I'm committing to beginning the process with the Cleveland Clinic on Monday, July 23!  I've just got to do it so I stop ruminating over all this. 

Need to plan some trips for myself - hope to go to Saratoga Springs to visit my brother and sit on his front porch.  And I have a granddaughter due in November!  That will be a fun trip, and one I'll take on my own!  After the experience in March travelling with Dave to California, I don't think I can do that again.

So, life goes on.  And it is good.  I have much to be thankful for.  Sometimes I have to remind myself. 

Chapter 50 "You're quite right, Mr. Hatter. I do live in a topsy turvy world."

So, after four years of a diagnosis of FTD, with symptoms beginning before 2002, we now have a new diagnosis.  Central nervous system autoimmune disorder, or inflammatory  disorder.  In particular his condition is characterized by the following antibodies: 1) alpha-3 ganglionic AChR antibody disorder 2) Rheumatoid factor 3) speckled antinuclear antibody and 4) SS-A antibody.  These antibodies were detected through blood tests done by our new neurologist.  Interestingly, when I research these antibodies, they usually indicate something specific like rheumatoid arthritis - Dave doesn't have this - or cancer - Dave had CT scans of everything and no evidence of cancer - lupus - nope, no symptoms of lupus - MS - nope - no lesions showing in his MRI's - Sjogren's syndrome - nope!  Dave's symptoms have always fallen right in line with FTD - textbook - except his progression has been very slow, and his atrophy is the frontal and temporal lobes.  In summary, he has an autoimmune CNS disorder creating a number of antibodies that have attacked his brain causing his cognitive symptoms and brain atrophy.  Since he has gone a long time without severe changes, it is likely he will just continue to smolder along and it is not likely he will develop a different syndrome or get a lot worse over time, according to our doctor.  

I'm still trying to wrap my mind around this - the first couple of days after our doctor visit, I spent a lot of time crying.  Because, selfishly, all I could think was how can I do this for thirty more years?  But after letting it all settle in and percolate, I decided to try to look at this positively - it's not terminal.  I have already stopped waiting for a big shoe to drop, stopped looking for a change each and every day, waiting for the incontinence to kick in, wondering how much longer I'll be able to work.  So that's good.....the sense of urgency has receded.  He is starting on Methotrexate - it's often given to treat rheumatoid arthritis - it's actually part of the armory for chemo in treating cancer.  It's an immunosuppressant.  Scary.  It might help.  The sense is he's had this for so long, there will be no reversing things.  But what do we have to lose, right?

I also found this information tonight - "neurologists at Mayo Clinic in Rochester, Minnesota, have found that patients whose symptoms mimic those of neurodegenerative dementias can actually have an autoimmune cause for their conditions. Although autoimmune dementia responds to immunotherapy, the disease often goes untreated because of misdiagnosis as a neurodegenerative or psychiatric condition."  "It can be devastating for patients to be labeled with a neurodegenerative disease but actually have an immune-mediated dementia, because they're missing out on a treatment that can reverse their symptoms," says Eoin P. Flanagan, M.B., B.Ch., a consultant in Neurology at Mayo Clinic in Rochester, Minnesota. "If treatment is delayed, patients tend not to respond as well. It's important to recognize this condition because you might miss your opportunity for treatment."  Hmmmm.  So if this had been caught awhile ago, it could have been reversed?  That's depressing. 

Plus, how many others have received this diagnosis like we did and the right blood tests weren't done?  Oh well.  It's the practice of medicine.  Most research I find are that symptoms usually come on much much faster for autoimmune disorder and include headaches and some other things that Dave has never had a problem with.  

In researching the Methotrexate, I found several articles indicating it might cause "foggy brain" - oh great!  One thread indicated neurologists who believe it might cause FTD, and rheumatologists saying it would not happen that way.  UGH!  

I'm thinking of getting a second opinion at the Cleveland Clinic.  I'm going to let it percolate for awhile.  It has already gotten so complicated and convoluted!  

So I may be closing up my blog soon, or change the name, or something!  I guess I should wait til I see about a second opinion.  But if going through this helps one person ask for the right blood tests to make sure there isn't an autoimmune disorder, it will have been worth it all.  

Spring has finally sprung!  A beautiful day today.  Can't wait for a few more.  It lifts my spirit so much, and helps me get through the day.  And do it all again tomorrow.    

Chapter 49 "There were doors all round the hall, but they were all locked, and when Alice had been all the way down one side and up the other, trying every door, she walked sadly down the middle, wondering how she was ever to get out again."

Haven't written for awhile.  It's been a tough couple of months.  I know I am in a rut.  I feel I'm losing myself to this disease.  Something I've sworn wouldn't happen.  But some days it is really tough.  My husband and I have been married for 39 years next month.  Most of those have been wonderful.  But the last sixteen have been tough!  Do I still love him?  I think so.  It's just so different.  I'm a caregiver now, and he's the person I take care of.  There isn't companionship or affection.  There isn't interest in my life.  There isn't appreciation of what I do.  In fact, there's no comprehension that anything is missing from our life or that things are different.  We were talking tonight about his appointment tomorrow morning with the neurologist.  This is the third visit to wrap up all the tests and figure out what's going on.  I asked him if there's any questions he has for the doctor.  He wants to know if he has FTD, because if he doesn't, he wants to stop wearing the wristlet he has that says "FTD:  Fight this disease" - ???  No one is making him wear it.  He put it on three years ago and has worn it every day since.   He firmly believes that nothing is wrong with him "yet" - and it doesn't matter what I say - he has left the conversation almost before it began.  So do I love him?  I love the life we had, the family life we created together - I love all the memories and the person he was.  But it is hard to wrap my head around this love - it's not like loving a parent; not like loving a child; not like loving a partner or friend.  There is no reciprocation or demonstration of love.  So it's weird.  I will always do my best to take care of him as best I can, and keep him content.  But I feel so lonely sometimes that it makes me mad! 

The loneliness sucks.  Some days I call my family or friends, and no one answers or is available, and I just want to cry.  Sometimes I'm afraid they see who it is and don't want to answer.  But I'm not calling to complain or cry.  I just want to hear about someone else's life, or talk about the weather, or some tv show, or politics even!  I need to hear about someone's more normal life and get to pretend mine is normal.  I don't want people calling and saying, "so how are you doing?" in a serious, solemn voice.  I want to hear an enthusiastic, "SO HOW YOU DOIN'?" with a smile coming through! I want my phone ringing because my kids want to talk to me!  Or someone wants to talk to ME, not the caregiver.  Sounds silly, I know.  My kids are great, but their lives have expanded and are full, right when mine feels pretty empty.  I'm so happy for them, but at the same time I hate it.  I hate that I get tired of being the one to call, and sometimes it's days before I get a call back, and I end up making some smart remarks.  It is so PETTY!   Because no one else is responsible for my happiness other than me. 

This is the time when Dave and I should be back to having fun, doing things together, making plans - partners in crime.  Instead I am a caregiver.  My time once I leave work is pretty much dictated by what Dave needs.  I know I'm allowed to do my own thing also, but I feel quite guilty. And I feel MAD!  I want a witness to my life back!  I want a partner in crime!  I want someone to help me plan the patio in the back yard, and pick the paint color for the house, someone who really cares about it and can offer a thoughtful opinion.  I want my best friend back to talk to, to worry with, to laugh with, to play cards with, to care if I had a good day.

I know I need to get in and talk with someone.  Get some balance.  Because, as I always say, I know it will only get worse, and that for now, my life is pretty great.  But there are days or weeks when the FTD is getting me too.  It truly is a family disease.   Nothing big ahead for us - so I'm back to making sure I truly understand the process of qualifying for Medicaid.  Keeping my once a month lunch with my FTD wives club!  I always look forward to that.

I'm hoping to get some clarification about the whole FTD vs encephalopathy tomorrow.  I've realized it doesn't matter what this neurologist determines.  What I struggle with is what people who's spouses have FTD struggle with.  He has all the symptoms of FTD, we have all the struggles of FTD.  And it will end the same way, no matter what the diagnosis.  I have a feeling it'll be dual - FTD and something else.  We'll see.  I need some doors to open for me.  Actually, I just need to figure out how to open them.  And I will.  Come hell or highwater.  Because I don't think I'll last long stuck where I am!

Chapter 48 "Curiouser and curiouser....."

Well, looks like paraneoplastic syndrome has been ruled out - no sign of cancer in the CT scans or the PSA test, or any of the other blood work ordered by the oncologist.  Some relief, but more questions now.  Curiouser and curiouser!

I've found some interesting research articles on autoimmune encephalopathies....but it all seems pretty squishy - many novel forms of it associated with antibodies, and overlap of syndromes.  No clear definition of diagnosis.  We don't see the neurologist again til April, and I know he's an expert in his field.  I worry about questioning too much and offending him.  While the study of these disorders has revealed how antibodies might alter memory, behavior, and cognition, the more definitive symptoms seem to be headache, seizures, and sleep dysfunction.  None of these three apply to Dave.  He has never been a person to have headaches.  He seems to sleep solidly at least nine hours at night, and dozes during the day.  He's had two seizures in his life - and they were while he was in the emergency room with head trauma after a fall on ice over three years ago - he had those within minutes of each other, and hasn't had any since, despite other falls.  AAARRRRGHH!  Why can't anything be clear and easy?  Feels like a blurry picture right now, like a Polaroid picture not developing like it's supposed to.

Does it really matter what it is?  FTD?  Autoimmune encephalopathy?  Or something else?  One - I can hardly get the words "autoimmune encephalopathy" out - it's a tongue twister.  Two - AE is relatively "new" - progression?  prognosis?  Can't locate much on it, because onset seems to be significant enough that it is caught early and reversed..  Three - THE SYMPTOMS DON'T SEEM TO LINE UP WITH DAVE'S SYMPTOMS!  Perhaps Dave's progression has not been as fast as some, obviously changing the prognosis a little bit - Dave has always been atypical - I wouldn't have married him if he wasn't!  But FTD varies a lot.  I know that to be true.  I also know that beginning fifteen years ago, he started changing.  Loss of filter; loss of empathy; unusual behaviors; loss of interest in others; loss of job after job due to gradual cognitive decline and loss of executive function.  He hasn't been able to smell anything for years - his gait is slow and shuffling.  The last year, he's lost a lot of memories and gotten more snappy with every one.  The long term memory loss is the most painful to see, and short term is frustrating.  In the three and a half years since we finally got a diagnosis, there has been decline.  Nothing major - no incontinence, nothing big and obvious, but subtle and progressive.  So what's next?

I'll continue to research, continue to wait for the other shoe to drop - because I know it will happen one day.  Continue to try to balance this life we are living.  This disease is beginning to take its toll on me - the last few months at work I feel I'm making mistakes, forgetting things - it's CRAZY!  I don't make mistakes!  I'm feeling more trapped on a daily basis, losing my ability to forge ahead, to be resilient, to distract.  Losing myself.  Need to snap out of it again.  Which I will.  Hopefully with spring on its way, and the days getting longer, it will happen naturally without too much effort.  Because I'm not sure I have it in me to make the effort.  Hopefully planning to go to California in March and see our grandson.  Once the dates are firmed up and the tickets paid for, I'm sure I'll find a new pep in my step.  And yes, my life is good.  Things don't have to be perfect to be wonderful.  Right?

Chapter 47 "But it’s no use now,” thought poor Alice, “to pretend to be two people! Why, there’s hardly enough of me left to make one respectable person!”

Oh my goodness  Where has another year gone?  They are starting to blend together.  But it's a new year beginning tomorrow.  Another fresh start.  Another chance to try to do it all over again.  Actually, to try to do it better, different.  Not all over again.  This year I feel I lost myself in this disease.  I let it get me down, I let it chip away at my patience, my optimism.  Despite many blessings over the year - new home, beautiful wedding of my daughter, my husband's continued plateau, sweetest grandchild on the face of the earth - I lose sight too easily of all the good simple daily blessings and choose instead to wallow in self pity, with millions of tiny violins playing a mournful tune!  Why do I continue to make this choice instead of another?  And in doing so, dig the hole deeper and make myself feel worse?  Poor me!  I realized this year what a B-I-T-C-H I can be.  Not a good measure of a year.

So here goes!  I'm going to try again to make better choices for myself - to fight to stay positive.  Not sure how I'll do it, but I'm going to try again.  Otherwise this disease - FTD or whatever disease it is that my husband ends up getting diagnosed with when all the testing is done - will keep taking - keep winning.  It has taken so much already. 

More doctor visits coming up - we met with an oncologist a couple of weeks ago - got more blood tests, have CT scans next week, and meet again the middle of January.  The test result that has taken us down this road was ACHR Ganglionic Neuronal AB - Dave's value was high.  To quote from the test results, this profile would support autoimmune encephalopathy.  There is a 30% predictive value for a cancer diagnosis.  So this is the doctors doing their due diligence.  Dave will have CT scans of his abdomen and pelvic area.  This is to check out this paraneoplastic syndrome, or hidden cancer.  We will wait and see.  There is still the question of FTD vs autoimmune encephalopathy.  I've been researching that.  It seems this mistake can be made often, but the autoimmune encephalopathy usually has a sudden onset - first thing that doesn't square with Dave's history.  The onset is usually severe enough that the diagnosis is pretty quick, not fifteen years later like ours was.  There are also some studies that seem to indicate that there is some question as to whether FTD can develop first and a part of the disease might cause the autoimmune disorder.  Right now I don't know enough.  Still trying to research it.  There is so much that is spot on with a diagnosis of FTD.   I'm going to ask about a spinal tap.  It seems there might be something more definitive to come out of that.  When I look at symptoms of autoimmune encephalopathy, they don't match up - at least not like FTD does.  So I'll have to make some notes,, see what the oncologist has to say, and go to the next appointment with the neurologist armed with questions.  Fun, fun, fun.

Sent an email to an old high school friend tonight - I happened to pass a big empty parking lot this evening and saw a car doing donut holes on the slippery pavement - the car was doing 360's, whirling around - remembered doing that once in high school with him.  Bad behavior - fun - risky - but it made me smile.  Reminded me of a feeling of freedom - something I'm missing.  Another thing to figure out how to find.  I sometimes feel I need to be very very careful of all I do - if something happens to me, Dave would be in trouble.  BIG trouble.  So, it'll be a new year.  Going to try one thing each day to make ME smile.  But do it cautiously and carefully!  And try to keep myself intact and of sane mind!

2018, bring it on!

Chapter 46 "It would be so nice if something made sense for a change."

What if it's not FTD???

Dave's new neurologist did a range of blood tests that came back with a lot of abnormal results, showing a lot of inflammatory activity and auto immune issues.   Despite the MRI, he believes it is a central nervous system inflammatory condition . . . . and my mind is spinning!  Are you kidding???  I've educated myself on FTD, I've gone to conferences on it, I feel a community with the people who are dealing with this, I've financially supported the AFTD, I'm doing this blog of our journey - I"M ALL IN!  But now I feel I'm on my way out and freefalling!  There's nothing definitive yet.  How frustrating!

We are seeing an oncologist on Thursday for further evaluation of the inflammatory markers and possible paraneoplastic syndrome, or "hidden cancer".  What a roller coaster!  What do I do now?  A central nervous system inflammatory condition.  That's what we're looking at now.  I don't know what's next with regard to a definitive diagnosis.  I don't know anything about progression, prognosis, nothing!  I don't know what to do next!  I don't know if there's support out there for an unnamed disease!

He has all the symptoms of bvFTD - but that makes sense because he does have atrophy in the frontal and temporal areas - so he would suffer the same losses in ability, the same changes in personality, the same odd behaviors.  But his progression has been so so slow unlike so many others.  It makes me wonder how many others who have been living with this for a long time, who have experienced the slow progression, may actually have a different diagnosis than FTD?  I wonder if we're on the right track looking at something else?

One comment the doctor made was that he may not get drastically much worse.  Which is good, right?  But at the same time, that means this is my life for a very long time.  I'm having a very hard time wrapping my brain around it.  It's a different journey.  I guess in part because we don't have anything definitive yet.  I don't know.  I don't deal well with all this uncertainty!

So, I need to think on all this, cogitate a little.  Maybe take up drinking.  I don't know.  Unfortunately with my current state of mind, nothing looks to promising or rosey....so there's an adjustment needed.

Curiouser and curiouser.  Do I change the name of my blog if we end up with a different diagnosis?  This all feels so weird.  It's not like finding out you don't have cancer or something....it could be more bleak.  I have to come up with a different life plan!  No impending demise.  We'll see.

Happy holidays to me - and Dave did tell me he doesn't care if we decorate or anything.....he used to love Christmas just like I do...or did.  This year has been enlightening in realizing some things just don't matter to him.  This is a lonely journey, FTD or central nervous system inflammatory condition. . . which is a mouthful by the way.  FTD is much simpler to say!  Right?

Santa, please bring me a shiny pair of those  rose colored glasses for Christmas!

Chapter 45 Fatalism

So, it's been awhile.  I cancelled the pity party - made plans for a four day weekend and took a road trip with a great traveling companion up to see my brother in upstate New York and his six lane bowling alley he's renovated and opening up.  It was just what I needed - the only kind of decision I had to make was whether to sit on his front porch, or back porch.  Nice!  There's something about leaving my situation behind (which I know I am very fortunate to still be able to do with not too much planning since my son lives with me), being on the road for eight or nine hours, stopping when I choose to stop, not being at someone's beck and call - what a relief.  And with the natural catastrophes happening all around the United States - hurricanes, fires - I was able to get back to realizing I have a lot to be thankful for - simple things like a roof over my head, a job, food to eat, and family.  I feel realigned - ready to face this life I'm living.

I had the time to think about what makes me most crazy about have this disease as a member of my family.  It's that feeling of having no control over my future.  I don't feel I can make long term plans, set goals, have any ambitions for the future.  In any normal every day life (whatever normal means anymore), we don't know the future - we can't know the future - but we can assume life will go on as it is, unless we decide to make a change, and we can plan for a year or two or three down the line.  Since FTD came to live with us, I have a glimpse of my future, and it's not pretty.  So one would think I'd put everything into living for every moment I do have, right?  But I feel trapped - don't want to unnecessarily spend money I may need, want to save any paid time off I've earned at work in case things all of sudden pick up speed and I need to be off work to do more personal caregiving.  And yet, time's a-wasting!  But....I have to be cautious!  I have to save more!  I need to be able to support myself when Dave's disease beings to progress!  Because that WILL happen, right?  This can't go on forever, right?  When we first received the diagnosis, we were told six years was the average life span after diagnosis.  But it doesn't seem like Dave has progressed significantly at all.  I have met and talked with others who have had diagnoses in the last year or two, and their husbands have progressed so much faster than Dave.  We are stuck in this middle ground where enough has happened to change my husband permanently, and my life permanently - but nothing big has happened with his disease for awhile now.  His progression is very atypical - probably started about 18 years ago - so when he was 49 - and while yes, things have progressed, the speed has not been near the norm in any way.  So maybe he'll be 90 when he dies!  Which means I have 20 plus more years of this!  I've tried to look at this all from a number of angles to see how I can plan, what I can plan.  I end up more confused.  So I'm just going to keep mulling it over and see what comes my way.

We have seen the new neurologist, Dr. Scharre, who is an expert in his field.  He has experience with FTD.  He is doing his own new assessment of Dave, and after our first visit with him for about an hour and a half, he's not convinced yet that it is FTD.  He hadn't seen the MRI films yet, so when we see him again in two weeks for some more testing and evaluation, he may have changed his mind.  He did state if it is FTD, that Dave's is very atypical - yup - I knew that!  He had some cognitive testing done with Dave in another office while he asked me some questions and took some history.  He is doing a number of blood tests to rule out some things.  I still feel once he sees the MRI where there is significant atrophy, that he'll confirm the diagnosis.  Or - maybe he'll have other ideas.  Maybe it's some other form of dementia.  This feels like the right thing to do - have this second evaluation - and a confirmation is expected.  But who knows? 

There are times when I wonder what if my husband was always like this?  Maybe he was always not so smart, and often not appropriate.  It has been so long, I'm not sure any more.  I contacted the county agency he worked at for 18 years before being fired in 2002 to see if I could find out exactly why he was fired, and if performance had been declining for awhile before then.  They were very helpful, and since it's a county agency, personnel records are a matter of public record.  So I recently received copies of his performance evaluations and disciplinary actions.  Glowing reviews the first fifteen years of his job, promotion to a lead position.  Then a lapse in judgement; some notations of not following directions; a year or so later, a two week suspension for a BIG lapse in judgement; talking in Spanish to people when he knew they didn't speak Spanish; inability to read cues from others' comments or behavior.  Yup - that sounds like the beginning of it all.  What was great and hard at the same time was to read his responses to his early evaluations.  They were so well written; so well thought out; so obvious that he cared about his work with kids and knew what he was doing.  That's the man I married!  That's the man I knew for the first twenty years of our marriage!  Reading his writings made me miss what might have been for the last fifteen to seventeen years if this disease hadn't paid us a visit.  I was reminded of how much we had - how much fun, how much love.  It was good.  But it was sad.

So I'm in a good place for now.  Making efforts to go somewhere - to the river for a walk - on a drive to southern Ohio to see the fall leaves changing color - me getting on the road, Dave getting out of the house.  My first effort was a success - a win-win - I got to go some place I wanted to go - Dave went along.  His enthusiasm was short lived, but that's ok.  We just headed home before I would have wanted to, but we can't always get what we want now, can we?  I can hang in there, keep trying something new to see what works for now - as things WILL change.  I can have some control over today and tomorrow for now - but not much past that.  Still working on finding that balance of living for now and planning for the future, without stressing out over life as it is and life as it may be.  That's my challenge for now.

In the mean time, happy fall!  My favorite time of year.  The holidays will be upon us - I plan to be realistic about expectations, thankful for what I have, and hopeful for the future!

Chapter 44 Dave's World

If you're looking for something uplifting in reading this post, stop now!  Don't continue!  Close out now!  I'm in a mood this week.  Just warning you!

So, I'm feeling very much like I'm stuck in the movie Ground Hog Day, except it's called Dave's World!  I'm stuck in Dave's world.  I was reading through some posts on the Facebook page FTD Spouse when I saw in black and white the analogy for how I've been feeling.  The sameness of every day is chipping away at my soul.  I know many people are dealing with much more difficult situations with their spouses and families than I am.  Most days that keeps me going, knowing that I am blessed.  But there are days where I'm stuck in my reality it's been difficult to talk myself into recognizing all the blessings.  It's part of the cycle, and I know it will pass.  For now, I'm grieving the loss of what should be, of what I thought life would be right now in my life.  I'm grieving the loss of some one to share my life with, to dream with, to work together with.  The other day Dave mentioned he doesn't remember our wedding day.  Not such a big deal, but a little sting, a little chipping away at my soul.  Absolutely hate this disease.

I feel guilt at the lack of quality I see in Dave's daily life and feel I should be working to improve it.  He lives the same life every day with very little variation.  He's alone from about 7 in the morning until about 3 in the afternoon.  I've asked him about finding maybe a friendly visitor, or someone to take him to lunch a couple times a week.  His response:  why?  I've invited him to go for a walk along the river on these beautiful evenings we've been having - why?  He is very content with his daily routine that I judge to be so boring, so lifeless.  But I guess I'm beginning to ask myself, who am I to judge?  If he's happy - well, not necessarily happy, but content - with the way his life is, why do I keep trying to change it?  I've realized it's because I can't stand it.  Selfishly, I CAN'T STAND IT!  I can't stand the sameness of every day.  The same conversations each day about the dog doing her business, what came in the mail, and what he needs from the grocery store.  The only conversations he initiates are about things he is ruminating about, like did I lock my car?  Did I lock the doors?  Am I going to the grocery store?  He did ask me the other day what a catheter is ...?  Turns out there was a commercial for them on the game show network, and he wasn't sure what they were for.

I find myself tearing up any time I have a few moments alone, whether it's in the car, or at work, or on the back porch.  I don't think I can do this for another 15 years.  This has been going on so long that the good things about our marriage seem to be fading into the background.  A friend asked me if the Dave of fifteen years ago would want me to be trying to figure this all out, trying to make it all work, being tied to what seems like a shrinking narrow existence.  Honestly?  I can't say.  He was a person who demonstrated his love for those around him through acts of service.  He studied for the priesthood.  He was a social worker, working with the severely mentally ill, then with children's services for 18 years.  So his life was one of service, in his work and in his family life.  I can't help but think if the situation was reversed that he would be content to be taking care of me til death do us part.  That's the kind of person he was.  He would never complain.  He doesn't complain now.  The closest he gets to complaining is when he asks someone in Spanish how they are doing and they respond "muy bien".  He responds that he's never muy bien - just bien or asi asi (so so).  But he laughs about it.

So it's time for me to snap out of it - it is what it is.  And if fifteen more years is what I have left with him, I need to remember all the blessings in my life.  I need to stop feeling guilty if I meet friends for a happy hour.  I need to be ok with doing my own thing.  I need to suck it up and keep going.  And I'm probably going to need some help - it's time to check in with my doctor and make sure I'm taking the best care of myself that I can.  And I need to find ways to feed my soul.  But this all is too much some days.  Too much to see my way around it and through it.  I wish I had a better heart, a lot more patience and willingness to throw myself into the role of caregiver, and accept the challenge to be the best caregiver ever!  I'll get there.

But not today.

Chapter 43 "You're entirely bonkers. But I'll tell you a secret. All the best people are."

So.....a new development.  Or maybe not so new.  My son told me a similar thing a couple of months ago, but when I talked to Dave, he seemed to understand that shows on TV are not real life.  But yesterday, in the afternoon, my husband was watching the SyFy channel - some crazy movie with a giant crocodile or alligator attacking people.  He said something about all the people getting eaten.  I said, you know that's fake, right?  He said, no, it's real - I saw that thing bite two people's heads off.  So many people have been killed........

I was a little taken aback!  So I explained it was just a story - made up - and that the people were just actors, that it was special effects.  He asked how did they make it look so real?  Again, I said special effects, and I explained that no actor would ever take a job if they were going to get killed in the part they were playing.  I didn't feel like he really believed me!  So I was trying to wrap my brain around all this.  A little while later, I asked him about Star Wars - it was one of the first movies we saw years ago - I asked him if he thought that was real.  He said, that's not real either?  Then I said - what about the Harry Potter movies?  Hogwarts?  Wizardry?  Battles with wands!  He again said, that's not real either?  My response was - it would be really cool if it was real!  But no, it's not.  He just kept wondering how they make it look so real!

So, my head was spinning.  But you know what?  For the first time, I was seeing a concrete symptom of his FTD.  Everything else - the OCD, the lack of interest in others, the cognitive problems - they have been happening for so long, so gradually, that in the back of my mind, I've wondered if these were just who he was once our kids were grown and gone.  I've known there was something wrong, but it was all elusive.  And annoying.  I admit, it sounds cold and unfeeling, but there are days I'm so tired of making decisions on my own, of having to do everything, give him rides every where, explain so many things to him, fix things he's messed up, get things out of the garbage he's thrown away that shouldn't have been thrown away, worried about all he eats, and on and on.  All the things that sometimes people have said "My husband does that, too.  Maybe you're making too much of it."  But this - there's no denying it - this is new, definitely not normal, and if someone tells me their husband does that also?  I'd be giving them some phone numbers and telling them their husband needs help!  This is something I know is not subjective - this is "bonkers" - no matter how you look at it.  But because I know it's a definitive symptom - and indicates a problem with figuring out what's real or not real - it actually helps me be more compassionate.  I know now that things are progressing - it may be small - but it's the first thing that's scary.  I start thinking about anyone who might knock on our door when I'm at work; anyone who might call.  It brings a new perspective to me about how he looks at the world, how he processes what he hears and sees.  We talked a little more today - I was giving him some concrete suggestions on how to tell if what he's seeing on TV is "real" or a story.  We talked about different shows - he asked if Wheel of Fortune is real - yes, I said.  It's a game show.  Most game shows are real.  I asked him about Big Bang Theory - he watches a lot of reruns of that - he said, that's real, right?  No, I said.  Those are actors that have a scripted story they are following, kind of like when our kids did plays in community theater.  I asked him about Two and a Half Men (I personally HATE that show) - he thought that might be real also - again, I said no.  Tried to tell him what was "real".  We watched Dances with Wolves today.  I pointed out if you look at the "info" on the TV about the show you're watching, and it lists actors - it's just a story - not happening in real life - no one is dying, or getting eaten, or cursed.  I asked him why it didn't worry him if he thought those SyFy movies were real - like five headed sharks, and giant snakes - he said because we don't live near those places, he wasn't worried.  I asked about all the vampire movies that are on that channel - he said, well, he doesn't believe in vampires, so he knew those weren't real......go figure.  I don't know if he'll retain our discussions - or remember what's real or not real.  We'll see.  That's an easy one to check periodically.  When I asked on the FTD Spouse page on Facebook if others had experienced this, the answer was a resounding yes - some folks' spouses talk to the person in the mirror or won't get undressed with the TV on because the loved one thinks the people on the TV can see them, another thinks two characters on NCIS live down the street from them and are their friends.  So Dave is in good company!  It is all a wild wild trip!  Only in FTD land!

For the first time on this journey, I'm a little concerned about him being home alone when my son goes back to his job in the schools in the fall.  I'll just have to be more vigilant, make sure he's got my cell and work number in his wallet, review what to do if he falls or hurts himself...Crazy crazy crazy.  Looking foward to our appointment in October with our new neurologist.  Starting to make a list of his behaviors, and this will be the strangest and most telling of them all, I have a feeling.

More later.  The story continues!

Chapter 42 "Sentence first - verdict afterwards."

We celebrated a WONDERFUL wedding last weekend.  Dave was able to walk his daughter down the aisle, and dance the father-daughter dance - he was in rare form!  He did a little solo breakout that was fun to see!  There was a glimpse of the man I fell in love with - we went dancing often when we were dating, and danced alot at our wedding!  Late 70's and early 80's - disco!

Dave came back to see Kristin briefly before she was ready to walk down the aisle - I haven't been able to find out if it was his idea to see her, or if someone suggested it to him - but it was very sweet when he stepped through the door and saw her.  He was quite overcome with emotion, and told her how beautiful she looked.  I don't think he's said anything like that to her for years and years.  He appropriately walked her down the aisle - I was holding my breath a little - and he stayed at the reception til the end - it was after midnight when we got home.  I had a friend on standby to pick him up if he wanted to leave, but I didn't need to call her.  He didn't talk very much to anyone, but he seemed fine throughout the evening!  It was a good good weekend.

His 90 year old mother, his brother and two other family members came to the wedding.  While he stated he was excited they were coming, he didn't show it.  It was gone out of his mind unless I brought it up.  I was glad they came.  His brother hadn't seen him in about ten years, and it was obvious to him that Dave has troubles.  His behavior was ok, considering what it could have been.  He still went back to the bedroom rather than sit with them while they were over at the house in the evening, which was a little awkward, but it is what it is.  He indicated his brother's grandson who was also visiting "is not family."  I explained it to the young man, 14 years old, and I think he "got" it.  It can be embarrassing...but that's life right now.

A wedding makes me think all over again about the wedding vows my husband and I spoke 37 years ago.  While we didn't exactly say "for better or worse, in sickness and in health", that is what we meant.  And when we said that, promised that, pledged that with all our hearts, unless or until it happens, we can't know if we'll be able to do it.  I am trying.  It's been fifteen years now, even though I didn't know until three years ago what was actually going on.  It is so so difficult, and so lonely with this disease.  I've lost my best friend, the witness to my life who is the only one who shared so many memories with me.  He's still here, but he's empty.  Most days I feel like superwoman, and I can do anything.  But many days I don't want to do it any more.  While the annoyances are pretty minor at this point, some days it drives me mad.  I went to a movie last night with my niece - I don't know when I last went to a movie!  Dave knew we were going, but my phone vibrated with an incoming call three times in twenty minutes starting at 9:30 pm, and each time he left a message.  While a part of me was worried about it being an emergency, most of me figured it was about locking the front door, or my car, or something like that.  I didn't answer it.  He called a fourth time as we were leaving the movie.  I answered.  He wondered where I was, and would I be home soon, as he wanted to go to bed but felt he couldn't because of the dog....???  I assured him he could go to bed and the dog would be fine, that I was on my way home.  Minor thing, right?  It's definitely a new thing - the fact that he didn't realize the dog was fine, that there are times I'm out past nine when he's usually asleep, and everything is fine.  But minor.  Just breathe.

I was able to get us in with Dr. Scharre, a well regarded neurologist at Ohio Statue University.  He's considered the "expert" in central Ohio with FTD, and I've heard him speak a couple of times at different events.  We only have to wait until October.  I'm hoping we'll get another MRI to see if anything looks different.  If everything is the same, I'll know I'm in for a really long slow ride, for who knows how long.  Do I want to know that?  What can I do with that information?  Not a lot.  I wish I knew someone who has this similar experience.  I feel guilt about wishing things would move along, and guilt that we seem to have it so easy compared to so many.  Two people I've spoken with recently are experiencing a much fast progression.  I frankly don't know if I can do this for fifteen more years.  That is depressing!  I should be so happy that things are going slow, but it is seriously sad to live with someone who doesn't really talk to you - doesn't wonder how your day was or how you're feeling.  UGH!  See?  Complain, complain, complain!  I need to be positive!  Life is good!  Tomorrow will be better!  At least I'm not dealing with incontinence!  Yay!

I feel like FTD is a sentence - doesn't matter how you've lived your life, if you're a saint or a terrible person, if you have friends and family - you just get a life sentence - Dave still thinks nothing is wrong with him, so he is really unaffected by this life sentence.  Me, on the other hand?  I think about it every single day - and the verdict?  That will come afterwards?  That's a verdict on me - on how I handle this journey - so I'm going to just keep hanging in there.  Vent on this blog when I need to.  Cry by myself when I need to.  Smile on the outside when I need to.  Put one foot in front of the other and continue to hope for more good days than bad.  Make plans for things in the future so I have something to look forward to.  Planning a little trip for me, whether it's to visit family or go see my grandson, while something to look forward to, also starts the guilt trip, the selfish feeling of doing it without Dave.  Still have to figure that part out....inclusion.  Working on it.  Hanging in there.

Chapter 41 "If you don't know where you are going, any road can take you there."

It's been a long time, but a busy last five months.  We sold our house we'd lived in for 26 years, and purchased a one floor ranch about four miles from our old house.  Not sure why I'm saying "we", because it felt very much like a one woman effort!  Dave did his best to help, but just doesn't have it in him to participate in packing and unpacking.  We moved in the end of March - still have boxes to go through, but we're getting there.  It's been nice to have the projects, like painting the kitchen cabinets, figuring out where to hang pictures, best place for furniture.  Fun!

I was very concerned with some behaviors I observed during the whole process of moving and settling in since I was spending quite a bit of time with Dave - more than usual on a daily basis.  He didn't seem to get that we had to take everything out of the house - we couldn't leave stuff we didn't want to use anymore!  He had quite a bit of problem finding words for a couple of days - that was scary.  He had a tough time having patience with "finding" things - I couldn't get it all unpacked as quickly as he would have liked, but it is what it is.  The word finding has improved, and he has settled back into a routine - things he uses regularly now have a place where he knows where to find them, but there are still things I haven't come across yet - things he NEVER uses - but he doesn't know where they are.  We'll get there.  I have to say I was pretty anxious for a couple of weeks watching this happen, and wondering if I'd made a terrible decision to move.  But one floor has been great.  I'm getting quotes now to move the washer and dryer up to the main floor.  I hadn't realized how much strength he's lost in his legs until we were carrying things to the car to take things back and forth.  He couldn't take a step up or down if he had anything in his hands.  He needed to be able to hang on to something.  Our first couple of days in the house, he went to grab the towel bar in the bathroom to help pull himself up off the commode and tore it right out the wall.  He quickly figured out that was not a good idea!   Top on my list when we see our family physician is to ask if there's a way to tell if this is from the disease, or is this something that physical therapy might help?  He shuffles, barely picking his feet up off the ground.

No neurologist yet, but not sure we need one until I notice BIG changes.  I notice little ones, at least I think I do.  I think that is why I haven't written for awhile - not a lot of change.  Not that I want things to get worse for him - he is perfectly content and mostly compliant - but it is so so difficult to maintain my focus on learning everything I can and watching for changes when any decline he may have had over the last couple of years has been so slight.  I don't know any more what I'm looking for!  Part of the reason for this particular quote in the title is that none of us in the elite FTD club know exactly where we are going, and the roads and journeys we all take have similarities, but are so different.  It's a little strange to write this, but sometimes I feel guilty that my husband is doing so much better than so many other folks with this disease - I feel I haven't paid my dues!  Even though this has been going on now for at least fifteen years - people I've met with diagnoses in the last year have progressed SO fast and surpassed any problems my husband has.  It is weird.

Anyway, I think I'm back to feeling like I want to write more regularly - even if it's just to note that things are pretty much the same.  I did do a webinar with AFTD regarding four pretty distinct patterns of atrophy in the behavior variant FTD, and the groupings of symptoms with those patterns.  I'll post the link next time.

It's already June.  CRAZY!  Wedding is only about six weeks away.  FUN!

Chapter 40 "We're all mad here."

HaPpY nEw YeAr!!!

Can't believe it's 2017.  It's been awhile since I've written.  I've struggled with a few things.  After gathering all the medical records and having them sent to the Penn FTD Center so he could be part of a research study there and have a full assessment and research MRI, it turns out the fact that he fell and developed a subdural hematoma, he doesn't qualify.  Even though he had the diagnosis before!  I don't get it.  His fall and surgeries certainly didn't move anything along.  He continues to be on a bit of a plateau and is atypical.  I'm quite disappointed - I was really excited about having a full assessment done by someone who only deals with FTD, which meant I might get some confirmation or explanation about all Dave's weird symptoms and whether they are related.  No help there.  I haven't been able to find a new neurologist with any expertise in dementia around here, at least that I can get into in the next six months to a year!  Frustrating.  I'm thinking that maybe some medication would help with some of Dave's OCD behaviors.  They are beginning to make me a little crazy - driving me a little mad!  (Not angry - you know what I mean!)

Also, internet robots have found my blog and are racking up fake page views.  I don't know why that bothers me.  I guess before that, I felt good that some folks were actually reading my blog and finding it helpful, or making them feel less alone.  I would get 10 or 12 page views a day.  Now it's hundreds - most of them fake - from weird web sites.  But it really doesn't matter.  I'm writing this for me to be able to put it all out there and have a record of this journey.

I discovered a facebook page called FTD Spouses.  It has been a nice support system.  It's a closed group, and everyone has a spouse with FTD.  I can throw a question out there and find out if others are seeing the same thing in their spouses.  It has also confirmed this is a disease that varies from person to person - such vast difference, but a lot of similarities also.  And it's a place to feel some fellowship, especially during the holidays.

Dave is pretty much the same, at least from my perspective.  He's had a few weird episodes - about a week ago, it was 11:30 at night and he got up to use the restroom.  I made sure he knew it was the middle of the night and he should come back to bed.  I fell asleep, and about 20 minutes later realized he hadn't come back to bed.  I went downstairs and asked him if he realized how late it was - almost midnight - he said he knew what time it was, but since he was up, he was fixing himself a boiled egg - because that's what he does on Wednesday mornings, and it was almost Wednesday morning, of course!  He'd let the dog out and fed her, like he usually does at 6 in the morning!  I suggested he turn off the boiling water and come back to bed, but he said he was fine and he'd just stay up - !!!  At about 3:30 in the morning, he came back to bed - said he'd gotten bored - nothing was really on TV - which means Family Feud or the game show network!  He'd played his computer game for an hour or so, his handheld game for another hour, and had the TV on.  I don't get it.  He still got up at 6 in the morning, let the dog out and fed her, and had cereal since he'd already had his boiled egg.  :)

He had a weird day where he was sure he didn't put his belt on right - I checked it for him - he took it off, put it back on - it was on just how it should be - but he said it wasn't - he couldn't "feel" it on the one side.  He went up and looked in the mirror - couldn't figure it out.  Then realized he didn't have stuff in his pocket that he normally does - once he put things in his pocket, the world was well.  A good example of how people with this disease can't quite connect the dots on things - kind of like swiss cheese - some holes in there that make it hard to figure things out.

He has some awful behaviors where he'll take a napkin or Kleenex out of the garbage to blow his nose - he doesn't want to use a new one.  He doesn't wash his hands after doing this, or after pushing down the garbage.  He takes things out of the wastebasket in our bathroom each day and puts them on our bed while he makes our bed.  GROSS!  But no matter how much of a fuss I make when I see it - which I've seen more since I've taken a couple days off with the holidays - he just can't change what he's doing.  Goes to the bathroom at the same time each day whether he needs to or not, eats his snacks of crackers with peanut butter and jelly at the same time every day, greets me with a grocery list each day when I get home from work that usually has cookies and black licorice on it.  And apparently as soon as I leave the house during the day to run an errand, Dave fixes himself another snack!  This has been reported by my son!  It is what it is.

We have everything set up with an attorney now, and have put the house in just my name, changed beneficiaries to "my probate estate" - this is in case I die before Dave - everything will be able to bypass him and go to my kids, and they'll take care of him.  I have power of attorney, healthcare power of attorney, and a few other things.  We got a will set up.  I feel better.  We are also looking at selling our house we've lived in for 24 years and moving to a small ranch with a very small mortgage.  I realized that if we stay here, I won't be able to afford the mortgage payment if Dave does need to go into a nursing home because his retirement and social security would go straight to the nursing home.  So this will give me some financial relief for now, as we seem to be living paycheck to paycheck no matter how much I cut out of our budget.  I also will feel more comfortable about a one level house - we live in a split with four levels, and I worry about his falling.  He moves slower and slower every day.  Walks with a shuffle.  We went to look at a house that came on the market and is close to our neighborhood, but in an area with far lower taxes - my best friend met me there - she hadn't seen Dave in awhile, and really felt there was a big change.  Maybe because I see it every day, I can't gauge the changes.  But he is still a very quiet guy - doesn't raise a fuss about anything - just goes along.  Some folks with FTD can get quite nasty and defiant.  Dave pretty much is compliant and quiet, not engaged much in the world.  People still tell me "he's doing great!!!" when they see him because he talks loudly in Spanish to them, says the same thing he always does, laughs - but after that, the lights go out in his eyes - they don't seem to notice that.  It's very hard for him to stay engaged or have interest in much.  But we are making it work.

So, busy, busy, busy!  But I've found I do better when there's a lot to do - I don't dwell on our situation living with FTD.  There's too much else to think about!  I'm looking forward to sort of having a fresh start in a smaller more manageable place, since I kind of have to do it all, or pay someone to do it.  Plus, my daughter got engaged over the holidays!  So I'll be busy helping plan a wedding for July.  Haven't quite figured out how I'll pay for it!  So the timing of selling the house is probably good!

I can only hope that 2017 brings us blessings of peace and contentment with our lives as they are, one day at a time.

Chapter 39 Two years and holding - 10 things I hate about FTD

It's been two years since diagnosis - probably at least 14 years since onset.  Since then, things have changed, but things have not changed.  What I have come up with is a list - a list of ten things I hate about FTD.  Kind of silly, perhaps. And when I started it with my kids, it was mostly humorous.  It led to more serious discussion. So here we go.

1.  I hate that I have no time by myself in our home - never ever.

2.  I hate that I have to drive everywhere - to run and pick up an onion in the middle of making dinner; or to take Dave to exercise and then pick him up, and if I need a ride to the airport, or when I get the oil changed, I have to call someone else.

3.  I hate that I have to make all the decisions about everything - we always did that together - or maybe not always, but for the first 25 years of our marriage.

4.  I hate that I have to educate every doctor we come in contact with about FTD.

5.  I hate that there is no time line of progression, no way to know what happens next and when.

6.  I hate that instead of looking forward to the future, I'm dreading what this disease will bring.

7.  I hate that it has robbed us of ten years of income when we could save for retirement.

8.  I hate that it has taken my husband, bit by bit, over these years til he is not the man I knew, not the man his kids knew. It's taken his inclination to be loving, affectionate, fun, and interested in me and his kids.

9.  I hate that I have no witness to my life - no partner - no one to share this life with, the good and the bad; no one to talk about the early days because he doesn't remember them.

10.  I hate not feeling like a wife anymore - just a caregiver; that it sometimes challenges everything I believed about myself and my capacity for tolerance, patience, and compassion.

The honeymoon is over.  I have accepted that I have to let it go - I can't fix it, I can't make it better. Dave is not the same man I married.  And I've taken some steps finally to take care of me.  I have twice been to a support group that is about an hour away from here.  I met with a woman whose husband was diagnosed in February one afternoon - and that was great - and we plan to meet again.  I've finally talked with an attorney to understand our options and get things squared away.  I've refinanced our house to lower our payment a couple hundred a month to give us more breathing room.  And I just bought a ticket with credit card points to Florida for a little vacation with two friends - we're all turning 60 this year! - AND I'll get to visit my grandson.

Life is good.  Let's face it - it could be much worse - and for now, we've been mostly stable for awhile - no driving, more memories lost, more loss of comprehension - but not too bad.  He would say he's happy.  And that is important.  Doesn't mean that there are no bad days - there were quite a few over the past few months - lots of pity parties.  But that doesn't help.  The glass is half full.

It is what it is.

A really great blog you may want to check out

There's a blog I came across - Houldingon.blogspot.com - written by a woman whose husband has FTD.  She just started her blog in June - there are five posts - and they are SO well done.  Her name is Dawn - she has a wonderful and thoughtful way with words, and she seems to be able to find just the right way to say many of the things I try to express about this disease.  If you happened upon my blog looking for someone on the same journey you're on, check out Houldingon.blogspot.com.  It is excellent.  I haven't read any quite like hers.  Her latest entry, The Changeling, talks about the change in the person with FTD.  Check it out!

Chapter 38 "It would be so nice if something made sense for a change."

We had a nice father's day.  Two of my kids that live in town were talking about a barbeque - ribs, corn on the cob, watermelon.  Dave wanted Kentucky Fried Chicken.  He talked about it for several days when the kids asked what he would like.  He was not interested in a barbeque.  So they picked up some Kentucky Fried chicken - exactly what he wanted.  I made a cake.  We skyped with our son in Florida.  It was the new normal, that's for sure.

Several weeks ago Dave fell - tripped over something in our room.  He hit his head on our dresser and his knee was pretty banged up.  I found this out when I got home from work - he didn't think to call me, even though he was having great difficulty walking and his face was swollen and he had a black eye.  I asked him when it happened - I had talked with him at noon to check in like I always do and he didn't mention it.  Yet he was fairly certain it had happened in the morning, but he just wasn't sure.  When I called the family doctor because Dave felt the pain in his knee was a 10, he was worried about how hard Dave might have hit his head and the chronic subdural hematomas he had before, and suggested we go to the emergency room. 

After Xrays and a CT scan, we were told nothing was broken, and there was no apparent brain bleed, thank goodness.  He did get a knee stabilizer that seemed to help with the pain in his leg a little big.  I wheeled him out to the car and we headed back home.

He would not put up with the knee stabilizer even for 24 hours.  His knee still bothers him, but has gotten a little better each day.  He hasn't been back to exercise at the senior center.  He insisted on mowing the lawn two days after the fall - even though he PROMISED me he wouldn't do it.  I should have known....but I give up on trying to restrict what he does.  It's no use.  I can't be home all the time - I don't have the option of staying home.  His cheek bone and black eye looked far worse before it started healing.  He still has a bruise on his face.  It's visible in the video. 

Now?  His other leg is swollen and hurting him.  The calf is swollen and tender.  My concern is a blood clot.  It's not red or hot - but it is very tender.  If it's still a problem tomorrow, we'll head to the doctor's.

When completing the paperwork for the request for waiver of premium on his life insurance policy, it was very difficult to put into words on the few lines provided why he hasn't been able to work in a position aligned with his skills and abilities.  How do I describe what he is unable to do?  It's easier to explain what he used to be able to do - and the things he can't do now aren't concrete - there's no easy answers.  It was very frustrating and reaffirmed to me how heinous this disease is.  People think he seems just fine - physically he does ok.  He has a form of dementia.  But it's different - the deficits aren't what I usually associate with dementia.  We'll see.  I need to work on how to concisely describe the deficits and changes in an unemotional way.  Just can't get there right now.  It makes me feel sadness and grief all over again about how much we've lost; how much of what I know about him is gone.  The one person I share so many memories with - and he doesn't remember them.  Still working on creating new ones.  Fun ones to overshadow the hard ones.

A few days before Father's Day, I looked up an old friend of his who is a priest and found a phone number for him.  Dave went to seminary with him, and they were best buds.  We used to often go up to visit him and his family over the holidays.  But about ten years ago, it stopped.  Dave called and left a message for John, asking him to call.  Well, on Father's Day in the evening, John called!  And to watch Dave talking with him - it brought tears to my eyes!  I had a glimpse of my husband as he was years ago - laughing, joking, enjoying himself - so much fun!  I'm hoping they might speak more often now.  I told John a little about what's going on and suggested he read this blog to get a sense of what FTD is and does to a person.  Dave certainly remembers John and their times at the seminary.  It's funny the "frames" of his life he seems to remember well.  It makes me think of a movie - where some times the film shakes or blurs - but then sharpens again.  Or it breaks and has to be spliced back together - but a part is gone.  I need to keep finding the parts that are still in tact and whole and hold on to those.

We're coming up on two years since we visited the neurologist for the first time in July, 2014.  In August we got the diagnosis.  I think he's been in a pretty decent holding pattern.  I understand this can be the case with this disease.  A holding pattern for a couple of years, and then a steep decline?  We'll see.  It's almost the end of June - 4th of July next weekend.  Looking forward to a long weekend.  Happy 4th of July!

Chapter 37 "You're not the same as you were before," he said. "You were much more ..... muchier."

I took a video of Dave last weekend, asking him some questions.  It's something I've been thinking of doing for awhile, thinking if I do it annually, it might be another way to capture change.  I was surprised at my response to viewing it.  It of course made me sad.  It shows his blunted emotions - it would appear he is a very depressed person.  And yet he claims to be a happy guy.  It confirmed his weakness at explaining things, at putting together his thoughts, how hard it is for him to form an original thought.  It also seemed his life is so so lonely and awful.  I don't know.  He isn't aware anything is missing from his life.  So is it missing?  I guess this is his normal.  But it seems so narrow and concrete and sad.  A blessing for him that he doesn't feel that or know it.  It seems sometimes he gives answers that he may have heard before or that he thinks he should say.  My daughter cried when she watched it. 

I learned a lot about what I need to do to engage him in conversation.  I need to ask specific leading questions to get him started.  If his sense of himself was normal, I would think this must have been a very stressful exercise as he struggled to answer what I thought were some pretty simple questions that might evoke a spark.  But I had to be more direct.  I had him look at it - he said he thought it was good. 

This video is flawed in that I had the phone turned the wrong way to record the video the best way...I should have had him sitting at a table or something so it wasn't so unflattering....knowing what I know now about how he processes questions, I would have changed my questions.  But then it wouldn't demonstrate the loss we have suffered thus far.  He was always a very animated person - people considered him the life of the party and when we were dating and first married, our friends would say no party was complete without him!  He always had a twinkle in his eye, and a devilish sense of humor.  When a person meets him nowadays, he always talks loudly and animatedly in Spanish.  People tell me he seems to be doing so well!  I see what's missing - the young man who twirled me around the dance floor non-stop at our wedding.  The young father who sang to his kids every night when he tucked them in for bed.  The man who had his kids convinced that if they all said "cambia la luz" at a red light, it would change to green!  I could go on and on.  All wonderful memories.  I wish he was still here with us, especially on Father's Day.  I miss him.

Here goes - it's a very amatuer production!  But it tells a story.  It is what it is.