Chapter 19 Back to the tea party - would have preferred to decline the invitation!

Dave had his follow up CT scan yesterday morning that was going to put my mind at ease that the brain injury he suffered in November was healing well.  Well - I should know now to expect the unexpected!  We no sooner got home when our phone rang - it was the neurosurgeon's office - I was to take Dave to the emergency room - there were "abnormal findings" and he needed observation.  Surprise, surprise.

Dave had a headache beginning Sunday - but he didn't tell me about it.  He mentioned it Monday late afternoon - and I knew we had the CT scan on Tuesday, so I suggested we make sure the doctor know about it.  Well, turns out he had bilateral subdural hematomas now.  On each side of his brain.  The blood had apparently been seeping all along.  But because of the "room" in his brain with the shrinkage he's already experienced from his FTD, there was quite a bit  of buildup before he had the normal symptom of a headache - NOTE TO SELF:  Suggest to the medical community that follow up scans be done sooner on someone who already has brain shrinkage due to FTD!!!

So yesterday afternoon, Dave had two burr holes drilled into his head - one on each side - to clean out the blood.  The surgery went fine - he has two funny looking drains on each side of his head.  His head is wrapped with gauze - he'll have an interesting haircut, I'm sure, when they remove the bandages!  At this point, he kind of reminds me of the Breaking Bad guy - a little shaved area showing so far above his beard on each side - not sure what lies under the bandage!

He was scheduled for another CT scan some time over night - to see if there is still bleeding.  Not sure what happens if it hasn't stopped.  But I guess I'll know later today!  Last night he was doing well - eating pizza and ice cream - watching TV - his headache is gone - kind of surprising with two holes in his head! 

It's about 6:30 am - just got a call from his nurse from the neuro critical care unit - she said he did well all night - she gave him meds a couple of times for pain - he went at 5:30 for his CT scan - results should be in soon.  I'm headed back to the hospital soon.

Silver lining?  Well, at least this surgery and the first two days of his hospital stay are in 2014 - and we certainly already have met the out of pocket limit for this year.  So my hope is all this new medical expense is covered 100%.  Woo hoo!!!  Gotta look for the small wins, right?

Chapter 18 "The more there is of yours, the less there is of mine."

Dave is done with physical therapy this Friday!  Yay!  And he's allowed to go back to his exercising at the Senior Center.  When I gave him a ride for the first time and went in to make sure (at the direction of the physical therapist)  he could get on and off the equipment he uses safely, I was so happy to see the response from the people there - they were all so happy to see him, giving him hugs, telling him how worried they'd been about him - it hit me how important that one hour a day is to him - how much the people there really care about him - and how welcome he feels there.  It was good.  And after spending two weeks with him all day long after his fall, it hit me again how "empty" his life seems to me - just watching game shows and little else.  He does not seem to mind - in fact I think he was happy when I went back to work!  He could do his thing without me trying to engage him in doing something else. 

I've taken family medical leave through all this - part to take care of my husband, and afternoons to help take care of my dad.  For the last three weeks, I've worked about fifteen hours a week.  Since Thanksgiving, my dad has been declining.  It is hard to watch, hard to participate, but I don't think I'd trade it for anything.  It has taken more of my time - between Dave's PT, rides to other appointments, afternoons at my dad's, and three mornings a week at work - plus Christmas on top of it! - some days it feels like too much.  I love the Christmas season, but this year has been a challenge to fit it in.  I've had many people tell me - don't worry - people understand - you've had a lot on your plate - etc., etc., etc.  While I know that is true, it doesn't make ME any happier - I want to have the time to enjoy the season, to think about Christmas presents, to decorate, to bake cookies, to wrap presents.  I've done all those things - well, except I haven't baked any cookies - but I didn't enjoy them.  I feel I'm getting lost in all that's going on.  I don't have enough time for work, not enough time for my dad, not enough time for my husband - and not enough time for me.  It's made me dream of what life could be - and makes me a little resentful of my situation.  I created it myself - and I chose it myself - so I can only blame it on me.  I'm the only one who can change it at this point - and seriously - it is not so bad!  Ugh.  I hate feeling sorry for myself, I hate the feeling I'm inviting "pity" from others.  I don't want it to appear I'm out to win the award for the saddest story!  I'm a strong person!  Things could be SO much worse.  Which adds even more to the pity party I'm throwing for myself!  Which makes me feel even sorrier for myself!  Silly.

It is two minutes til midnight - almost Christmas!  I have the tree lights on, and I'm playing the music to Charlie Brown Christmas - all is quiet in my house.  The presents are under the tree - the crèche is there, too - this is a Christmas moment for me.  A little slice of heaven.  It gives me peace - I look forward to it every year.  This year has been different - surrounded by life changes - doing it all on my own - Dave just doesn't have it in him to "participate" in the season.  At least not the way I'd like him to - not the way he used to.  We had SO much fun thinking of gifts for the family and for each other.  This year I had to drag him to stores with me - I just got tired of doing it alone - but he usually just wanted to sit in the car.  It makes me sad.  And it makes me mad.  I WANT MY PARTNER BACK!  I want to hold hands on the couch, talk about the day, talk about Christmas, talk about my dad, cry on his shoulder, receive some comfort and affection from him.  I want him to feel something - to offer an opinion - to want to do something - to be spontaneous - to have an original thought that is normal and appropriate.  IT WILL TAKE A CHRISTMAS MIRACLE!   

Being home more over the last month - witnessing more of Dave's daily life - I do see more evidence of his disease.  Today was the day for garbage to get picked up.  So yesterday he put everything out - the garbage, the recycling - but in the span of about an hour and a half, he went out in to the garage twelve times, taking more garbage or recycling out, one can at a time.  Six out of seven days of the week, I find the water in the bathroom sink running - sometimes just a small stream - sometimes a pretty decent stream - I've tried to ask him time and time again to stop - take a look at the sink - AND MAKE SURE THE WATER IS OFF!  But to no avail.  He had a small list of things he needed at the grocery store today - I explained the store was packed - could it wait til Friday?  Yes, he thought it could.  He had enough shampoo and deodorant and soap to get him through tomorrow - but he still had to mention he needed to go to the store four more times.  My patience is wearing thin.  And I'm only in the first quarter of all this!  So I've enjoyed taking time to think about the things I want to change in my life - my job, which would change my attitude, which would change the feeling of helplessness I have, which would make me happy!  Right?  Right???  Isn't that how it works?  But that seems like SO much effort - and will it effect a change in my life?  I just am zapped of energy for now, but so is most everyone I know right now - so - I'll give it a few weeks - see how my dad is doing - he wants to make it to January 1 because he wants to see the Buckeyes play Alabama in the playoffs!  He is certain the Buckeyes will win!

Well, time for bed - or Santa won't come!  I DO believe, I DO believe, I DO believe!!!!!!!

Chapter 17 "Well that was the silliest tea party I ever went to! I am never going back there again!"

Finally.  At 7 pm, we got to leave the hospital.  After a stop to drop off prescriptions, we made it home.  Justin and Kristin were waiting there - Dave was helped to his chair, and a big fuss was made over him.  Justin actually made the comment that his dad seemed "better" then before he went in the hospital.  He was more engaged in conversation with them, and laughing.  I hated to burst his bubble, but I think it was only because of all the stimulation in the hospital - he had to constantly answer questions, meet new people coming in, and at the moment he came home, the kids were actually talking to him and asking him questions - engaging him in conversation.  If they stop and think, they don't have many topics to discuss with him - his fall and hospitalization presented one - and Dave was kind of liking being the center of conversation where it was all about him.  They have seen in the days since that he doesn't have much to say, other then that his head hurts once in a while, and that he won't be able to drive for three to six months. 

I had four appointments to schedule with different doctors - primary care physician, neurosurgeon, neurologist, and physical/occupational therapy.  I'm not even sure who the neurosurgeon and neurologist are - I assume I met them in the hospital, but maybe not!  Different people rotated through each day.

He has slept very well since he's been home.  Better then in a long time.  Solid eight hours.  But his underlying frontotemporal degeneration is causing me some difficulties with him resting like he needs to, and slowly getting back to a normal routine.  He seems unable to comprehend that this was a serious injury, and he needs to take it easy.  It's not like he had a really active life before, but he was very independent in that he exercised at the Senior Center six days a week, he could go to the grocery store when he wanted, go up and down stairs when he wanted.  He could have a beer during an OSU football game.  He could run and get himself a candy bar if he felt like it.  For the first six days, someone was always with him going up and down the stairs, while he took a shower, while he got dressed - leaning over to get his shoes made his head hurt a lot - he doesn't seem to like being taken care of.  I caught him the first day he was home putting his coat on - I asked him where he was going - he said he had to rake the leaves!  I suggested he just watch some game shows.  He moved slowly before this, but now he is SUPER slow, and a little teetering to the left.  Over the course of his eight days at home, he's improved with the balance.  Going up and down the stairs is going much better - he's doing one step at a time, like a child does - putting one foot on the step, and the second foot on the same step before going up to the next step.  He can carry something in one hand now, while going up and down.  He is really taking his time and concentrating - which is a relief.

He had his PT and OT evaluations yesterday at an outpatient facility.  The OT evaluation went great - no problems with that - the PT evaluation indicated significant balance problems and risk for falling again.  Most concerning was his blood pressure, taken three times during PT.  In the hospital, while he was on Dilantin and not taking his blood pressure medicine, his blood pressure was actually pretty good.  By last Tuesday, it was about 128 over 80.  Yesterday, all three times, it was high - the highest was 167 over 102.  EEK!  The physical therapist suggested I have his blood pressure taken again last night, and today, and see how it was.  She also suggested I call his primary care physician to see if he should be seen earlier then this next Monday.  This morning at the little "self serve" blood pressure spot in the grocery store, it was 152 over 97 - after taking his high blood pressure medicine!  So I did call the doctor - haven't heard back yet.

We go to PT again tomorrow, and he has exercises to do at home twice a day in between.  It's been a long nine days.  I can't wait til the appointment on Monday to ask some questions and get a better understanding of what Dave needs over the next few weeks.  The spikes in his blood pressure scare me - the abnormal finding of a "hygroma" noted on the discharge papers concerns me - not sure what that means and if anything needs to be addressed with that - when is he "out of danger"?  Or is he really not in any danger and he's fine being all on his own all day, FTD and all?  Are the "ice pick" headaches normal?  I know I'll be sleeping with one eye open for awhile - maybe the week before Christmas when we have another CT scan and appointment with the neurosurgeon, I'll feel better.

In the midst of all this was a wonderful Thanksgiving, with 65 family members all under one roof.  My dad made it to the gathering, which was a blessing.  We all thought he might not be with us still by Thanksgiving.  He was so up, and looked so dapper!  And he was so happy to call each of his eleven children (my brother-in-law and my two nieces and one nephew stood in for my sister that passed away) that could make it up to give us a gift - copies of love letters his mother and father wrote to each other in 1901 while they were apart for two weeks just six weeks before they got married.  His point to each of us was that our family started years ago with true love.  It was truly a first hand view of life 113 years ago.  It made me smile to read their proclamations of love for each other.  So sweet!  And a priceless gift!  All the hustle and bustle set my dad back, but he wouldn't have traded it for the world.  He's run a fever and been confined to his chair for days now, and we're worried about him making it to each weekend, let alone til Christmas.  But, my dad comes from strong stock, and I think he'll continue to rally and have some good months left in this world.  For my four brothers and their families that were visiting from out of town, it was very difficult for them to know it may be the last time they would see their father, that they were maybe saying good bye for the last time.  Heart breaking.   And that's life, right?  It happens every day.  But as it is happening to us each individually, it's a wonder we can get through it and go on.  But I think it's all we can do - if we stop for too long....I don't know what happens then.

So - moving on....

Chapter 16, Part 2

It's two days later.  Still at the hospital - hopefully today is the day he's going home.  He's doing very well.  Back to his old self completely.  A little wobbly on his feet, but making it down the hall just fine.

The number of people who have come in and out are amazing.  Doctors, nurse practitioners, surgeons, trauma team members, PT, OT, trauma PT and OT, neurologists, interns, and the list goes on.  In hindsight, I should have made a banner or sign or something that says "I'm hard of hearing, and I have FTD."  It became very clear how important it is for me to advocate for him and explain to everyone what FTD is.  There was considerable concern about his cognitive abilities.  I had to repeatedly explain that today, he is normal.  It may not be their normal, but this is how he is.  He is as good today as he was last week.  Some felt it was important he do inpatient rehab for OT, which would address their concerns about his cognitive abilities.  But this fall didn't bring those on.  I had to point out that his baseline was lower then most, that this is the way he is - that his brain has atrophied - he can't comprehend a lot - it takes several discussions for him to get the idea.  Yadda, yadda, yadda.

Frontotemporal Degeneration is new to so many.  I know these folks on this brain floor know about it, but because it is SO different for each person, it is SO important to hear the caregiver out.  It is important to speak up and be a part of the team that is assessing the loved one.  I can tell this will be something I'll be doing for a long time. 

Pause here!  Just had another person through here - a really great neurology nurse practitioner who I have been so impressed with.  After a reassessment by both PT and OT, we are all in agreement.  He's going home!  Today!  He'll have to be watched 24/7 for a while.  He'll have outpatient physical therapy.  I've arranged for some family medical leave.  We'll take it one day at a time.

Woo hoo!  Happy Thanksgiving!

Chapter 16 "Would you tell me, please, which way I ought to go from here?"

Where to start.  My husband's in the hospital on the neuro critical care unit.  He slipped and fell on the ice this morning.  His feet literally flew out from under him and he landed flat on his back, hitting his head in the process.  He lay there, dazed for a bit.  I'm not sure how long.  Probably just a few seconds.  He was very disoriented as we waited for the ambulance.  He didn't understand why I'd called 911 - didn't remember he'd fallen.  He had no physical injuries, and no large lump on the back of his head.  But needed to be repeatedly told to sit still in my car - "who's car is this?"  he asked several times.  By the time I'd followed the ambulance to the emergency room, he'd had a seizure.  Apparently he'd been joking and talking in Spanish to the EMT's and emergency room workers - then seized.  So I was led to a waiting room until they rushed him upstairs for a CT.  After the CT, he seized again. 

I waited in the room for awhile, periodically going to the doorway and looking up and down the hall, hoping someone was looking for me to fill me in.  I am not very good at waiting.

After a while, they came to get me to take me back to his "room" in the ER.  He didn't know who I was.  "A woman with glasses."  He couldn't move his left leg or arm - I was asked if he'd ever had a stroke.  Thoughts were zigging and zagging through my mind.  He'd had two doses of Adavan - one after each seizure - so he was pretty out of it - I knew that - but I still had my life flashing before me - not my past life - what the future might hold.  About a half an hour later, my daughter arrived.  He did recognize her, and by then recognized me.  He was starting to move his left leg and arm.  What a relief.

The nurse working with him in the ER was an angel.  So compassionate and caring.  He held Dave's hand a lot.  Kept saying that Dave had been through a lot, that he was a trooper.  He had seen Dave at his most charming, joking and speaking Spanish to everyone, and now saw him at the lowest point ever.  It was very touching.

Dave was moved up to the ICU.  Kristin and I waited about an hour while they got him settled in his room.  He was very out of it.  Slow and slurred speech.  Dozing off.  Some drooping on the left side of his face.  By late afternoon, he seemed more alert.  Still confused and a little lost.  Kept trying to get out of bed.  Was surprised he had to stay the night.  Every hour a neurological assessment was done.  The strength in his arms and legs was returning.  He could say his social security number, his birthday, his name.  He had the date right, was off on the year - like 1214, or 1914.  Would answer that he was at Deaconess or St. V's hospital in his home town in Montana, before he would get it right.  I was glad to leave the hospital and come home in the evening.  I was spent and couldn't face that reality any more.

Continuing on Sunday - when I got to the hospital at 7, I knew he was doing much better when I saw at some point he'd requested the cable tv listing - yay!  The collar from around his neck had been removed.  He told me he'd been awakened every hour for the neurological assessment, all night long.  His speech seemed normal.  His eyes were bright.  I felt SO relieved.  He read the newspaper - seemed so well compared to the day before.  About nine, I headed down to the cafeteria to get something to drink.  The last thing I did before I left the room was show him the nurse call button, reminded him he could not get out of bed on his own, and that he had a catheter in and didn't have to worry about that - I came back to a little chaos.  He'd gotten out of bed on his own to use the restroom, and got half way across the room before his IV pulled out, his catheter came apart at the bed and started spilling, his monitors pulled off.  The nurse and nurse's aide were in there cleaning everything up, changing the bed, getting him cleaned up.......... I know it is to be expected.  But it still stuns at the core.  He seemed to get it after that that he needed to stay put.  He was so wobbly on his feet, I don't know how he made it as far as he did without falling.  Ugh.

Through out the day, he needed constant reminders to stay in bed.  He did not remember anything about the day before.  He was allowed to eat and drink and did so with gusto.  Doctors came and went.  He won't be able to drive for about six months.  He'll be on anti-seizure medication for awhile.  He seemed to take all that in.  He was moved to the step-down unit for brain and stroke patients.  Got settled in there.  I went home for awhile in the afternoon - Kristin sat with him for awhile - but he continued to try to get out of bed - pulled off monitors, just not being sure what they were.  When I got there about six tonight, the nurse was in the room.  He had been calling the nurse every fifteen minutes to go to the bathroom.  She asked if he usually goes to the bathroom that much, and I told her that was not normal.  When he did it two more times while I was there, I suggested they give him a bottle or something.  He tried that, but again contacted the nurse.  Unfortunately when there is an auditory response from the nurses' desk through a small speaker, Dave can't hear it.  So he wasn't responding to their questioning.  It was disheartening to witness it, to see a little frustration from the nursing team - I don't blame them - they were still very kind and responsive - but I could sense the frustration.  They put an alarm on the bed so they'll know when he tries to get out.  He is trying to squeeze through the little part of the bed that doesn't have a railing - he's persistent!  As the new team came in for their shift, I explained about the FTD, that Dave just couldn't retain the instructions to not get out of bed, etc.  They were all understanding.  But it was difficult for me to witness it happening again and again and again and again.

Before I left, he was talking about not being able to work on Wednesday and that he'd have to call them and say he couldn't do it till the next week.  I reminded him he would not be able to drive for awhile - he seemed quite surprised, despite the fact we'd discussed it several times during the day. 

I have many questions - could this significant short term memory loss be permanent?  Tomorrow, will he remember today?  Does the FTD exacerbate this new brain injury?  I've been assured that this brain injury and seizure is a separate issue from FTD - but I'm wondering what this will add to the picture.  As I'm writing this, I just have no idea what the next days and weeks will bring.  Dave is getting an MRI this evening.  Hopefully we'll have some results tomorrow.  He's still so unsteady on his feet, I'm not sure he'll be able to come home tomorrow.  And how long til he can really be on his own?  Should I take family medical leave?  Just not sure what happens now.  Another reality check - I've had enough of them lately!  Now I'll be researching subdural hematomas, long term effects, etc.  Double ugh.

Chapter 15 "I'm afraid I can't explain myself, sir. Because I am not myself, you see?"

This was a tough trip.  Is that the right word?  Not sure.  Taking Dave out of his element, out of his routine, makes his deficits all the more evident to me.  I think my son didn't really notice anything different then he has seen most of his life - Dave's disease started for him when Mike was 14 or 15.  The drive was uneventful - I did most of the driving, and could not relax when Dave was driving.  But he was content to sit and literally do nothing.  One of the first things he did when we arrived at my son's was to see if they had the game show network on their tv, which they did - so Family Feud was on whenever he got the remote.  There were times he would change the channel from something my son or daughter-in-law were watching - they didn't say anything, but I could feel that responsibility somehow for his behavior rising up in me.  I know it's not my responsibility - but I can't escape the feeling that I should be able to make him stop.  When asked to change it back, or when told someone had been watching something, he would sort of shrug his shoulders and seemed to have no sense of what others in the room were doing - yes, I know this is part of his disease - yes, I know he does this at home - but witnessing his behavior in front of others somehow makes me embarrassed all over again, makes me want to change it - which I can't.  Every one he met - anywhere we went -  he would talk in Spanish - so what?  Right?  I don't know why it bugs me so much - or maybe it's just hearing it five or ten times a day.  And so what if he's rude and changes the tv channel, or is really loud at restaurants, or chews with his mouth open?  So what?  Why does that bug me?  It's just his disease.    It's just his disease.   It's just his disease.

In part, I know it's because I realize how difficult it is to have him as a guest.  And though all would deny it, I know I won't feel comfortable staying at someone's house again.  Yes, his antics can be funny - yes, Mike's friends understand.  But I know I was embarrassed - and I feel it must make others in our company uncomfortable also.  No one will say it, but perhaps the next time, they just won't make it, you know?  Michael says it doesn't bother him - he just knows that's the way his dad is.  So maybe I'm the only "bad" person - I'm the only one who feels like wanting to hide under the table at the restaurant.  I feel a little bit like being back in the place where people are thinking - wow - she's making too much of this - no one said that - I think my radar is picking up signals that aren't there - I'm losing it!  I have seen the MRI - I live with his behavior every day.  I know that each isolated behavior in and of itself is nothing unique - it's all of them strung together.  UGH!  So I think I'm going to take a break from the blogging for now.  I'm tired of feeling like I'm complaining all the time.  I'm not in a good place with all this, so I don't think this can help anyone right now.  Or maybe I'm the only person it bothers - because it's my partner - my "other half" - actually a part of me this is happening to - I don't know.  Where is my self-proclaimed serenity when I need it?

I wanted to do this blog to share with others my experience - I know when I first started this, it was cathartic for me - and I wanted my family and others dealing with a loved one with FTD to maybe not feel alone in all this if they find my blog and find a shared experience and some hope.  But I don't feel a lot of hope right now.  I sometimes just want to cry and run away.  I'm not taking my own advice very well - to make the most of everyday, find the good in everything, yadda yadda yadda.  I have failed miserably this trip.  So frustrating.  I'm feeling a little sorry for myself, having a pity party.  And I don't like it.  I know part of this experience is the frustration, but right now writing about it is bringing me down even more.  I've tried to be honest and candid here - I felt it would be a good record someday for me to have of this experience - but maybe I've been too candid - put all my dirty laundry out there for whomever might stumble across this blog.  I don't like what this is bringing out in me.  I don't like coming face to face with all my shortcomings, all my weaknesses, my wanting to quit.   

Maybe in a couple of weeks I'll feel differently.  Maybe I'll have recovered from whatever bug or virus I have that seems to have run me into the ground.  Maybe I'll have time to get some perspective.  (I'm beginning to hate that word.)  This trip did not do what I expected - rather then recharge, I think it drained the battery.  There I go - complaining again!  Ugh. 

So three months since the diagnosis - three months til we see Dr. B again.  No significant change in my husband - just in me - and at this point, not for the better. 

Chapter 14 "Off with her head!"

Another long week.  Had to go back to the doctor and get another round of antibiotics.  I think today I've finally regained some energy.  I actually stayed home Thursday afternoon and most of Friday - went to work very early on Friday so as not to spread any germs.  But it has been tough to not see my dad.  I did venture over last Sunday while I was feeling better for the day - wore a mask - stayed six feet away - only stayed for a short time.  But he already seems "smaller" and pale - more tired - sort of becoming a shadow of himself.  This is not unexpected with his cancer.  But still disconcerting - it's happening.  He spends most days in his chair - sleeps there - doesn't get up as much.  Says he can feel that he is getting weaker.  Ugh.  It's been over three weeks now - but I don't want to be the person who gets him sick with a respiratory infection of some kind that he can't recover from.  And I know there are things he wants to talk to me about since I'm his executor.  Things I'm supposed to do.  Phone calls I should be making.  But the energy had been zapped from me.  I should know better then to power through an illness - I should have taken the time to recuperate.  I hope to go over tomorrow evening if he's up to it. 

My husband and I are taking a road trip to Florida to visit our son in the Coast Guard.  I want him to see his dad - while things are still pretty stable.  My son will be out at sea beginning December 1 for 50 days.  He'll miss the holidays with his wife - and with us.  We've been fortunate that the last two years he's made it home for Christmas or close to Christmas.  But not this year.  So I want to make sure we get to visit him and his wife - see their apartment - get a sense of their life together - I want to be able to picture them in their daily life - at the dog park where they often take their two dogs - at the grocery store - just doing regular things  We'll get to see the cutter Michael is on when he's out to sea - I think we might even get a special full tour of the boat.   It'll be good to know how he lives and sleeps half the year.  To meet some of their friends.  To see him in his uniform! 

But I do feel guilty leaving town - my dad could go any time, I guess.  But at the same time, as long as I make the most of the time I can spend with him, I should be at peace with that.  I know I'll miss my dad when he's gone.  He is someone I can have lively discussions with, unlike with my husband.  My dad is up on current events, and though we have different views about things, I do like hearing his perspective - after all, he's lived a lot longer then I have, and been through a lot more.  I tend to feel that being challenged on my beliefs and values is a good thing - to rethink them and reform them - to recharge them.  He knows a lot about the history of so many things.  He's led a pretty amazing life.  And though the last few years have been challenging for me at times to see him in a positive light, I know he is a good man with good intentions.  I will miss him.

It's funny - I will miss my husband as his condition deteriorates, but I've missed him so much already - all the big parts of a marriage - the companionship, discussing situations, making decisions together.  That doesn't happen any more.  We always had so much fun!  He calls me at work to let me know that the remote isn't working - that the channels won't change - or to ask if I'm coming home for lunch.  And if I don't answer because I'm in a meeting, he calls again and again.  There unfortunately isn't much substance to our conversations.  It does make me sad.  I do know he misses me - or maybe it's just that if I'm not home when I usually am, it upsets his routine - I'd like to think he misses me.  But it has been that way for so long now - I do think when my dad is gone, it will be more evident, that I will be more lonely.  Though sometimes there is so much to do between work and my husband and my dad and my kids, it seems SO stressful.  And yet when things are kind of calm, I can get quite antsy - it happens to me sometimes at work - when there are weeks and weeks of working lots of hours on a lot of things, and the due date finally comes - it can be hard to figure out what to work on - even though there's lots to do, it's hard to get the pace going again when the pressure isn't there, when there's finally time to do all the things that have been put on the back burner.  Happens at home too.  I'm famous for my unfinished projects!  I have to throw myself into things - but when something more pressing comes up, I have to put that aside - and it seems to take me awhile to come back to it - to regain the enthusiasm to keep going. 

I finally have a phone appointment scheduled with ProSeniors.  It's a sort of legal hotline to get some answers to some of my questions to move forward with the will we need to set up.  That seemed so pressing a month or so ago - and now that I feel my energy returning, it's time to get back in the saddle and charge forward!  Well, after a couple of days in Florida.  Just what the doctor ordered!

Continuing this 24 hours later - long day of work in preparation for being gone - suddenly realized I should have a will in place since we're making a long road trip!  Going to try to do something tomorrow evening just in case.  What fun.  Still haven't seen my dad as my sinuses seem to have experienced a set back again....but still getting better each day.

Chapter 13 "Why, sometimes I've believed as many as six impossible things before breakfast."

I think I'm going to take some of the magic dust I got for my birthday and go somewhere.  Not too far away.  But far enough away to get away.  To rebalance - recalibrate.  Maybe a cabin somewhere in the hills.  Fall colors in the trees.  Maybe a little rain.  A couple of good books.  A fireplace.  Better yet, an outdoor fire pit.  Some music - old stuff - John Denver, James Taylor, Eagles, Joni Mitchell.  But also some Jimmy Buffet - some fun stuff!  Sounds heavenly.

I've been under the weather for about a week and a half.  I don't get sick very often.  In fact it's been a couple of years.  But this bronchitis hit me like a truck.  I sometimes have days where I don't want to go to work, don't want to get out of bed.  But with this bout of bronchitis, I couldn't get going even if I wanted to.  It was a bit of a reality check to realize how much I take for granted waking up every day and feeling pretty healthy, despite all my bad habits.  I'm sure the stress of the last few months helped to bring me to the point of hitting a wall - mental health has so much to do with physical health.  Not only do I take for granted my health, I can't even fathom going through life feeling so fatigued all the time - something that plagues so many people every day.  I feel like I lost a week and a half.  I couldn't go see my dad - I didn't want to take the chance of getting him sick.  Missed a couple of days of work, worked a couple of days where I was basically missing.  Didn't accomplish a lot, at home or work.  Ugh.  But I woke up today, realizing I was going to get back to normal (and what is normal???) - feeling like I was back in the land of the living.  So I dove back into it all today!  I'm realizing it's going to take awhile to be 100%.  Once again - the cosmos is telling me to slow down.  So much for all my new perspectives over the last couple of months - of finding a new balance - of making the best of everyday!  The need for occasional recalibration is a fact.  I can come to conclusions about how to live my life, but I need to be more mindful of practicing that and taking care of myself.  Vitamins, exercise, vegetables, sleep......

I'm getting back to my quest this week.  Just today got the final word on Dave's driving evaluation - he's good to drive.  Contacted Social Security again - he's supposedly been approved and should hear officially in two weeks.  On Friday, I call a hotline for seniors to hopefully get some guidance on what happens to retirement funds we have if Dave needs to go into a nursing home - what are assets the would keep Dave from qualifying for Medicaid, and what assets would the state have a right to as a part of Medicaid recovery.  Maybe Dave won't ever need to go to a nursing home - maybe he'll be around another twenty years!  It's scary, and selfish, to wonder what will happen to me if he gets really sick - and dies.  I've always thought that at least I have the house to sell and have some money to live off of, but that won't happen if Dave needs to go into a nursing home.  When he began getting his retirement from PERS - which isn't a great amount of money after the medical insurance premiums come out - but it is set up for the same amount to come to me upon his death.  Will the state get that?  Is my 403b plan through my work going to be mine?  I have to figure out if I change all my beneficiary information to my kids?  Or to a trust?  Or do I just trust that things will work out, that Dave will just be here at home, that we'll be able to manage.  It's funny - I'm usually really good with going with the flow - with adapting to how things are - but it really shakes me because I'll be doing it alone for all intents and purposes - I'll have to figure it out myself - I'll have to make it work.  I know it's been that way for awhile.  But knowing it'll be that way for the rest of my life - and that I have to make some plans - in case I die, or in case I live - just seems so surreal.  But I have a long time to get used to the thought, I guess.  And, many people are doing this everyday right along with me.  They are going through the same seemingly impossible situations - no, in fact, they have far more troubles then I do.  I have to remind myself that I have many people who love me and will help me through all this.  So I won't be doing this alone.  I won't be able to do it alone.

Chapter 12 "It's always tea time."

Busy busy week.  Made 20 dozen tamales for Food for Thought.  I could have gotten more donations, but I was SO tired of making tamales!  They came out delicious, and two people were generous and gave more then I requested in trade for a dozen tamales.  Two of my sisters and one of my nieces helped make the first fourteen dozen!  But I ran out of meat!  So Friday night I went back to the store, prepared more meat, made the sauce, and today put five and a half more dozen together and cooked them, and I'm finally done!  This small effort raised over $400 for the AFTD.  I have ideas for next year - to maybe only sell them frozen, and spread my efforts over a couple of weeks!  Maybe even charge a little more - and get some of the meat donated by a local grocery store.  North Market Spices donated all the spices for the sauce - what a difference a good fresh spice makes in flavor!  I was very touched by all the folks supporting my efforts - helping make the food, making out tags, supplying bags, buying tamales, donating spices, and donating money when they didn't even particularly like tamales!  (They don't know what they are missing!!!)  I also welcomed the opportunity to tell people about FTD.  For instance, when I was at the local hardware store early on tamale construction day to buy some cheap plastic putty knives to aid in spreading the masa on the corn husks, the cashier asked what brought me in so early?  So I told her about what I was doing, and we talked for awhile.  She shared with me about someone she knows with FTD - a local woman who was first diagnosed with Alzheimers in her mid fifties, but more recently that diagnosis was changed to FTD.  She praised me for my efforts and admired me for my strength....????  I of course thanked her.  But I felt falsely admired - that is a strange way to put it, but I can't think of how else to say it.  For me, this has been challenging, but all the strength has come from others.  The burden, if that's the right word for it, has been shared.  I am so lucky to have a large family - and sisters who are always there for me.  And my husband's diagnosis has put so many other things in perspective - especially work.  I've worked for the same non-profit for 30 years now.  When Dave began losing jobs, they allowed me to increase to 40 hours a week - and I threw myself into my work - though it was stressful at that time of our lives, it offered financial security and some peace of mind that we would survive.  The last couple of years have been very stressful at my work with a merger and new leadership - it's basically like working a new job with new expectations and proving myself all over again, not taking much time off, working lots of extra hours.  I've had an epiphany since then.  Not really by choice at first, but by necessity.  Other matters have taken over my thoughts - I've replaced ruminating over when a budget is due, or what quarterly report is next, or how long my "to do" list is getting at work with my husband's issues, and more recently with my dad's issues.  I actually find my frame of mind is much better at work - because I've been forced to find a balance.  I can't think about work ALL the time.  Let's face it - my family is more important then my work - and my family crowds my thoughts now when I'm lying in bed trying to go to sleep.  There is a fine line between taking care of my family and taking care of my job - and the two are so intertwined because if I don't take care of my job, I can't take care of my family.  But before all this, I thought about work too much - I felt frustrated, trying to meld together two different systems of doing things into the best practice for the new organization - never feeling like I was accomplishing anything - working so hard, so much to do, and the feeling of such dissatisfaction with myself because I was doing nothing well or not doing enough - probably all in my mind because I spent so much time worrying about it when I wasn't at work. I could only concentrate on what I was doing wrong for this "new" company, what I needed to do better - now I've been forced to find that balance - and because I'm not thinking "work" 24/7, I don't know, it just feels better.  And when I'm done with work, for the most part, I have many other things more important to consider and plan for.  Work is a break from life stressors, and life stressors are a break from work.  Weird way to look at it, I know.  I'm in a honeymoon period with this disease our family is living with - our life has not noticeably changed once we got over the initial shock - it's been interesting to do all the research and learn everything I can and see what I can do - tell people about this disease - make people aware - feel my main goal is to make life count.  It's all still pretty surreal.  The new perspective on what's important in life is a welcome change - and the most significant change since getting a diagnosis.  Dave's progression has been slow and steady - but not really "bad" yet.  When it gets to that point, I don't think I'll be strong - and I know I won't be able to handle it with out continued support and strength I can draw on from others.  I'm sure my perspective will feel different then - maybe the rose colored filters will come off - maybe I'll begin to feel angry and sorry for myself.  But for now, there's a balance, it's my life, and it's good - and it's my new "normal".   

There was another seminar to attend today on the legalities of elder care (which I ended up not being able to make it to!)  - which seems weird to say out loud - elder care - I guess my husband is almost 64 - which is older - but elderly??  I picture a much older tiny person with wispy white hair, a wizened face, maybe a little curve to their back - that's not my husband at all.  He is robust, loud, dark hair with some gray, still appears so full of life.  Just not the life we once imagined.  But his issues are those, or will be, of the elderly.  Mine will be too one day.  But trying to plan for a likely outcome of his disease, what I think we'll be facing seems out of place - friends of mine are dealing with these issues with their parents - I'm doing it for my spouse.  Something doesn't seem right about that - I think we're sitting at the Mad Hatter's table for a tea party, and things just aren't what it seems they should be.  But isn't that true about all of life?  I was talking with my brother today - about life - and about "normal" - it's actually what's normal that changes - what was normal ten years ago or five years ago, or even last week, might not be what is normal for today.  He was so right - at times we might long for "things to get back to normal" - but what's happening right now, whether it's helping a friend, or a family member, or a parent - it's the normal for today.  It is what requires our attention for today.  I don't want to wish this away, waiting for normal - plus, normal is different for each of us.  Dave's normal is certainly different from mine - and my normal is different from my dad's or my brothers or my sisters.  Literally, it means the usual, average, or typical state or condition.  And it brings to mind why I have always enjoyed going to stay with my brother's family to run away for a few days - I don't really want to "do" anything - just see what their "normal" is, because it's different from my "normal".  I can picture them in their kitchen, or on their front porch.  I can picture Phin on the chair in the living room with his leg up over the arm.  Their normal is a peaceful serene place for me - it's where I go in my mind at stressful times - sitting on their front porch - just being quiet, or engaged in lively conversation, or having a drink, or taking a nap.  I guess I have never thought of that before. 

So anyway, my normal is kind of like the Mad Hatter's tea party - where nothing seems normal.  Sure makes life interesting!

Chapter 11 Cheshire Cat

I'm not certain why, but the Cheshire Cat in Alice in Wonderland reminds me of my husband.  Sometimes he's very present, and sometimes he seems to fade into the background.  Today was a day when he was very present.  We had a birthday party to attend for a niece - actually a grand niece, I guess?  I saw Dave interact with more people then I'd seen in a long time.  It seemed he was enjoying himself.  I think all my family members know now of his disease.  They know now he isn't choosing to ignore them or to not interact.  He's just not sure how to start up a conversation, and he in part doesn't realize what he's "supposed" to do in a social setting.  I felt so touched by family making a point to talk to him, to give him a hug, to try to start a conversation with him.  And he responded well!  I heard him tell a couple of people about his disease - he showed off his awareness bracelet that he is wearing now all the time.  He asked me the other day if he could take some of them to the senior center where he works out, because he's talked to a couple of guys there about his disease.  WOW!  He knows he has it, he knows it will probably get pretty bad eventually, and he finds it to be a topic of conversation.  It is so good to see him having some social interaction instead of just sitting in a corner or going off by himself.  And he actually seemed to be more himself.  The Cheshire Cat was in total view.  He did good!  It is kind of funny - I feel a little like a parent who's child had a really good day at preschool and played with the other children.  It's a good feeling!  And I felt really proud, as silly as that seems.  I saw a glimpse of the old Dave - not the really long ago Dave, but not so much a "faded" Dave.  He seemed a little "muchier"!  Later this afternoon, my brother-in-law and my niece stopped by.  He wasn't certain who my niece was - she's been out of state and even out of the country quite a bit the last couple of years.  But once I told him who it was, he was very warm and glad to see her and stayed with the conversation a little.  Exactly what the doctor ordered!  It made for a good day.  I feel so thankful for the family I have, and their understanding of his disease, and their efforts to reach out to him and engage him in conversation and life.

He's actually working with a new client through home health care.  He's only had one morning with a gentleman so far.  I'm not sure how long it will last - how long til the gentleman might feel uncomfortable with him.  But who knows?  If we ever get the driving assessment report back (AAARGH!), we may find he shouldn't be driving at all, and it may be over before there is any choice in the matter.

I've gathered lots of information on the legal and financial issues we need to consider in planning for the possible long term of this disease.  I now need to look it all over, plan my questions, ask some more questions of professionals in the aging arena to formulate MORE questions, and go back to the attorney.  I know anything put in place can be changed, and the most important thing is to get the power of attorney and healthcare power of attorney in place for both of us - and I guess having something in place immediately that can be changed later is the better plan.  I don't like not knowing everything I need to know before making a decision - and I'm one who always suffers "buyer's remorse".  But I will just need to jump in and get on it!

Chapter 10 "What do you know about this business?" the King said to Alice. "Nothing," said Alice

Another week gone by.  Four weeks - almost five since the diagnosis.  No real change in Dave that I see.  It's more that the deficits seem more obvious.  He has now lost his last two hours of work each week doing home health work with one gentleman.  I don't think it is reflective of Dave's behavior - I think this was more just a matter of the need for help coming to an end.  But now he has four days a week that all he does is watch TV pretty much all day, or play Spider Solitaire on the computer and go to exercise each day.  I spent time on the phone last week trying to track down a report on the driving assessment - that was a month ago!  The doc's office is going to see about tracking it down for us.  One day a week he does his hour of volunteer work.  He seems content.  I'm kind of jealous!

I bought myself a birthday gift - "Planning for Long-Term Care for Dummies" - some good leisure time reading!  Should help me fall asleep at night!  We met with an attorney last week.  It set the wheels in motion.  So many things to consider.  Power of attorney.  Health care power of attorney.  Living will - or no living will.  Health care proxy or something like that.  The tricky part is how to set things up in the case of my death - and how to make sure what I have in the way of life insurance and my pension savings ends up being used to take care of Dave.  I don't think I want to make Dave the direct beneficiary because he wouldn't know what to do with it to make it last.  I believe there is a "trust" it could be left in that would preserve it for his care - to continue to pay the mortgage and bills.  Or I could just designate one of my children as the beneficiary with their understanding of what it's for.  But will that create tax implications for them?  And how do I make sure that any money left over at the time of Dave's death goes to all three of my children?  I guess that is what we would set up for Dave - first to me, if I'm not around, then to the kids - I don't know what happens with his small retirement that is set up as a monthly benefit that then goes to me at the time of his death - but what if I'm not around?  Does that just end?  SO MANY THINGS TO FIGURE OUT!  Like what about the house?  I know we need to make sure it is set up with joint survivorship so it doesn't get caught up in probate, but then what happens?  I feel SO ignorant of all this - and it is so complicated.  It is certainly an education.  I want to make the best use of any time with an attorney - so I figure the more I know, the clearer questions I can ask so as to save time - and money - and feel comfortable with what I'm putting in place.  Plus I need to make sure Dave understands what he is setting in place for himself by giving me power of attorney, etc.  And I think I'll probably be spending a lot of time on the phone!  I have planned to take Fridays off from work for now when I can.  I need that week day time to make sure I can make phone calls, be on hold and stay on hold - sounds like fun!  Plus it will give me time to plan time with my dad - he seems to have a lot he wants to tell me about my role as executor.  So this will let me breathe and get it done.  And looking forward to a trip to visit my son and his wife in Florida - I want him to get to spend some time with his dad - I just don't know how this will progress, and we need to make the most of things right now.  Dave still doesn't really get that anything is wrong - it continues to amaze me - I've had many conversations with him - but the other night while skyping with my son, I told Dave to tell Mike about his illness, and he basically said nothing was happening.  Oh well.  That's ok.  It's just the way it is.

I'm fortunate to have a good friend I've worked with for thirty years who is the director of our Older Adults program.  She is so knowledgeable about the services and resources that are available in central Ohio.  She also knows a lot about the ins and outs of Medicare and Medicaid.  At my work, we also have a Caregiver program and I can get some good information there.  Never dreamed I'd be a consumer of our services!

I also recently have been connected with another central Ohio woman with a husband who has FTD.  That has been a gift.  She is a friend of my sister's, and now we are friends on Facebook and e-mailing back and forth.  Her husband's disease has progressed further then my husband's and he is in a nursing home, so she has been through so much more than I at this point.  She has been offering wonderful support, and I can't wait to meet her and talk with her face to face.  She is very willing to share her story and experiences, and I am so grateful.  It gives me a little perspective on this disease.

FTD Awareness week is October 5 - 12 - the theme is "Food for Thought" - I'm going to make homemade tamales - $18 a dozen - chicken or pork - and sell to family and friends - my sisters and kids are helping - should be fun!  Hope to have people pick up on Friday, October 10 and Saturday, October 11.  This is my husband's mom's recipe - I've helped her make them many times in the past - she makes them best - but mine are pretty good!  I made a practice batch this last weekend and they were GOOD!  I've asked for some brochures or some kind of literature to enclose with the food to help educate people about this disease.  Feels good to do something.

 

Chapter 9 "What is the use of a book," thought Alice, "without pictures or conversations?"

These images I've posted are the scariest to me.  They provoke the most thought, the most wondering, the most googling.  I wish I understood more about the make up of the brain.  The image with the comparison to a normal 80 year old brain looks so horrific.  What do the big spaces mean?  What particular behavior or process is that affecting?  I'd love to show this to a neurologist who didn't know any of Dave's symptoms and ask - what would you expect see in clinical presentation of a person with this particular MRI profile?  I don't know if anyone can tell me that. 

I've tried googling FTD MRI images - many come up - but it is so hard to know what I'm looking at.  A few look similar to my husband's.  I'm hoping by posting these that anyone accessing this blog because they also have a loved one with FTD might see something familiar - or something very different then their loved one's MRI.  That someone might have a loved one with similar symptoms, but a very different MRI, or similar MRI but very different symptoms.  I don't know what difference it would make - other then it might help still the wondering if I can just figure this all out some how - can some how predict based on this one MRI - I want to know what comes next!!!  Is there someone who could look at this and say, based on what has atrophied so far, that this is what will likely happen next?  My sense is that this disease does what it wants - is fairly random in what might be effected one week to the next.  Though these images indicate severe problems to me, does it actually look not so bad for now?  And how bad will it get?  When I look at it, I feel like he should have more problems in evidence then he is having so far.  Maybe it can look so bad and not be producing any physical symptoms that I'm aware of because we supposedly use so little of our brain - maybe part of what has atrophied is a part that isn't used? 

I wish I could make a list of symptoms, and then a little map of the brain would light up, showing; what atrophy would be most likely to be apparent with those symptoms.  Then I would pick another symptom - like trouble speaking - that will come eventually - and see what lights up - see if it's close to what's already happening - see if it's close to the current edges of what looks like chasms - see if it's next.  Or load my husband's MRI into some app that would spit out the symptoms that are likely in evidence with his profile.  Wouldn't that be cool?  So far, I haven't found any such tool, and I doubt there's one out there.  But I'm sure there will be some day.

We finally meet with the attorney briefly this next week - our original appointment got cancelled.  We got the bill for the driving assessment - but not the report yet!  Our insurance actually covered the assessment - all but $67.  Amazing.  I'm a little anxious about the report - I know Dave reported he did well, and he hasn't had an accident in several years, but I am beginning to get concerned about it.  I guess I could get him a bike - with a basket - and he could still go to the store like he enjoys, and pick up some groceries.  He'd have to stop his two hour a week job - and probably have to walk to the senior center where he volunteers once a week washing dishes for an hour or so, and where he goes to exercise six days a week. 

If anyone reading this knows anything about MRI's, most especially MRI's of a person with FTD, and you have some insight to offer, I would so appreciate it.  Feel free to e-mail me at sorod55@gmail.com, or comment here.  Or if you have similar thoughts, concerns, or any reason at all. 

I so wish I had a crystal ball.  Sometimes I wonder about selling our house if he'll eventually be in a wheel chair - we're in a split level with no bathroom on the main floor.  Or if I get some work done in our tiny little master bathroom that no wheel chair would ever fit into, should I go big to plan for the future?  Or should I fix things up here and get it ready to sell so we can move into a one level with plenty of room for a wheelchair to maneuver?  Ugh.  My brain just never stops spinning.  So much to consider and ponder.

Chapter 8 A picture's worth a thousand words

My husband's MRI is the middle one - on the left is normal - on the right is advanced Alzheimer's.  This demonstrates how his hippocampus looks pretty good - where in Alzheimer's it would seriously deteriorated.  But his temporal lobes compared to a normal brain have significant spaces.

My husband's is in the middle, again with a comparison to a normal brain and one with Alzheimer's. 

This is the most telling - on the top is a normal 53 year old brain on the left, my husband's in the center, and a normal 86 year old brain on the right.  EEK!

Chapter 7 "Where should I go?" said Alice. "It depends on where you want to end up."

Monday we have a brief consultation scheduled with an attorney to find out what we need to think about with regard to power of attorney, a will, medical decisions, and every thing that goes along with setting things up before Dave isn't able to contribute to those decisions.  And knowing that Dave even now wouldn't be able to handle money or deal with some every day decisions, it feels somewhat urgent to get something in place in case something should happen to me.  It feels a little bit strange to be worried about the care of my husband in case of my death where for so many years my concern was only for the care of my children should anything happen to me.  I guess I have never thought about who I want making those decisions if I die before Dave.  In the past, I've briefly talked with the children about what the plan might be to make sure their dad is provided for and taken care of if something happened to me, but I haven't thought about "decisions" that might have to be made.  I haven't given thought to the legal aspects of it.  In normal circumstances, the husband would look after things when a spouse passes away.  Dave will continue to need someone to look after him.  He wouldn't be able to live on his own, manage money, take care of himself.  I worry about the burden that places on my children.  They would not shirk the responsibility, but I don't think they can comprehend what it will entail.  I can't even comprehend what may be ahead for me.  I can't fathom the decisions I may have to make about Dave and care he may need in the future.  So to think of my children having to make that decision is mind boggling.  I know people have to make these decisions every day.  It is a part of life.  And a part of death.  It is all so intertwined.  And so frightening.  I'm not sure if that's the right word for it, but it's the one that comes to mind right now. 

I remember so clearly when my sister had a mastectomy years ago - I was so thrown by the results - large tumor and removal of some lymph nodes - I had to run to the grocery store on the way home from the hospital after spending a large part of the day in the waiting room - and I was standing in line to purchase something - the cashier smiled and said "how are you today?"  I think I answered "fine" - but my mind was screeching - how is everyone still going about their business like nothing is wrong?  MY SISTER HAS CANCER!  And yet life does go on.  Every day I know I pass people in the halls of my work, or on the street, or in the parking lot at the grocery store who are dealing with much personal sadness and loss.  And their minds may be screeching just what mine was that day.  It is so much a part of every day life for thousands of "someones"  every single day.  I'm just not used to it being a part of my every day life.

That fact is even more apparent with what is happening with my father.  He saw an oncologist yesterday - I was at the appointment.  The estimated life expectancy is 6 months - could be more, could be less.  It seems surreal - like I'm watching myself go through the motions - because my dad feels well.  It's not like he has been feeling sick for months or years.  In fact at 30 years older then my husband, my dad is so capable and sharp.  Six months?  Really?  I sent the word out to family - we tend to share this information by e-mail so everyone gets the same facts.  Otherwise it can be like that old game of telephone - where after the message has been passed along, it doesn't resemble the original when it gets to the last person.  I know when I wrote this e-mail, I change the wording so many times to make sure I don't add anything I've concluded from the discussion that may be way off base.  It may be silly, but with such a large family, it feels important that we all get the same information to start off with. 

In the doctor's office, as we discussed my dad's prognosis, he talked about maybe wanting to parachute out of an airplane.  My brother mentioned Dad has always asked why jump out of a perfectly good airplane?  Dad chuckled - and said something about a bucket list.  I hope my dad does it!  I hope this will make him grab all the opportunities he can that in the past he might have passed on - and I know it will push me to make time each week to spend with him.  If six months is the right estimate, then once a week means I'll only see him 26 more times.  What?  Wait a minute.  So maybe it should be twice a week - and still, that's only 52 times.  It makes me sad.  I guess I have taken it for granted, that it will be the same today as yesterday - until I become one of the "someones" - afraid to lose someone I love - afraid of the change that is coming.  It's funny, because I've always thought of myself as a strong person, a person more aware then some of how life can change like the weather, a little more grounded in reality.  But I find each day that my perspective is changing with the challenges life presents.  All those little sayings - don't sweat the small stuff - stop and smell the roses - seize the day - live life to the fullest - they are so simple yet so challenging, they hold so much truth.  And I can do all that in an ordinary every day life.  And for me, that will help me make my life extraordinary.  I want to make it all count now - for myself, my kids, my husband, and my dad.  I have my own little bucket list - wanting to go whale watching - taking a horse drawn sleigh ride in the snow - and maybe I'll get to do those things some day.  But if I don't, my every day ordinary life can be extraordinary if I choose to make it so.

This morning I head over to talk to my dad about his will, etc. at his request.  I'm his named executor.  So I'll get a taste of what I need to think about for our meeting with an attorney to prepare for the rest of my life. 

Chapter 6 "How long is forever?" "Sometimes, just a second."

On Friday, my father got results of his biopsy he had earlier in the week.  He is just shy of 94 years old.  He's had a long healthy life, but a couple of years ago was diagnosed with bladder cancer.  He's had a couple of runs of treatments that have held it at bay.  But it has now spread to his lung.  It was an aggressive cancer at the time of the original diagnosis.  So it is not a surprise that it has finally begun to spread.  But it is a disappointment.  I know people don't live forever, and that as we are living, we are moving toward death.  But I can't get through a day thinking like that!  Who can?  We talk about life!  Make the most of life!  Live your life!  Seize the day!  We all know our time on earth is limited.  Yet it is still a surprise to me, each and every time, when someone I know is terminally ill, or dies.  Even my dad at his age.  I think if I had an estimated point in time that I may stop living due to disease or some injury, I probably would look at each day as dying, rather then living.  I don't think I am a person who will handle that well. 

My mother handled it well.  Or at least in my presence, she did.  She also never really asked how long she would live with her cancer.  I remember asking what the doctor said - how long do they think?  She always told me she didn't ask.  Maybe it gave her more control.  It allowed her to keep living, because there wasn't an "end date" looming.  Or maybe she did ask but didn't share.  I sometimes wonder what her thoughts were as she knew her "forever" was coming to an end.  I think I was afraid to ask.  She was almost 74, still young. 

I've been spoiled - in my very large family of eleven brothers and sisters, eleven brothers and sisters-in-law, many nieces and nephews and great nieces and nephews, we've been very fortunate to be for the most part a healthy bunch for so many years.  But we're getting older - my mother died fifteen years ago, I lost one of my sisters four years ago at the age of 57, and a brother-in-law in his early 50's about nine years ago.   I guess that's life, right?  Death is a part of life.

FTD, whatever it does in its destruction of the brain, takes away the comprehension of what is to come for my husband.  I think that is good for him, not so good for me.  I don't think I'll get to know his thoughts and feelings when things progress, whether that's five years from now, or ten or twenty.  I feel like it would be a one way conversation.  We have had several frank conversations about the disease.  And I've told him that this disease is different for every person.  He seems to "get" that he has FTD, but it is easily put out of his thoughts and his mind.  And yet, I've heard him in conversations with people when he is doing what I call his "bit" where he talks in Spanish and asks how people are doing, when the person says "Muy bien", he always says he's never muy bien (very good), he's just bien (good) or asi asi (so so).  I don't know if he's just trying to be funny, or if he is not feeling great. 

As I have more conversations with him, interacting with him more, trying to pull him more into my reality, trying to engage him and get some exercise going in that brain of his, I do notice more deficits in comprehension and life skills.  It is just more evident to me now.

As I read more about FTD and try to educate myself about the stages and progression of this disease, I am reminded that we are fortunate that Dave's progression has been slow thus far.  But I wonder what starts the next stage?  What causes the tipping?  Is it one particular brain cell among all the other brain cells that bursts or dies or whatever and another light goes out?  Or is it the opposite?  Is it not using a part of the brain - not accessing its power - not exercising it that makes it fail further?  I'm not good about not knowing.  I need the big picture!  I'm a big picture person!  But I don't have control of this.  And no one really knows.  So we just keep on living, a day at a time, and we make the most of it all!  Because forever could be just a second.

Chapter 5 Just rambling throughts

Time off is over.  Had a nice long five day weekend - got to start this blog, which has been so cathartic.  Got to find out more about this disease.  Got to let this all settle in and move on.  Not move on from the facts of life - not leave this all behind - but move on from the shell shocked state I felt I might have been in last week,   I'm moving on with this new information and this new perspective.  It is amazing to me how knowing the cause has made my relationship with Dave so much easier.  I'm more concerned then anything.  I've tried to suggest some things he might be able to do during the day - to exercise his mind, and take up a few hours that he won't be able to just sit and watch the game show network!  I suggested jigsaw puzzles - no go.  Suggested a Stephen King book - he used to really enjoy those - no go.  Suggested some of the activities at the Senior Center - billiards, Euchre, puzzles - a more resounding "why would I want to do that?"

So I guess I'll just keep trying to come up with other ideas!  My son suggested maybe we come up with a printed sort of monthly schedule and plan it out with his input.  He actually doesn't mind doing household chores.  He does a lot of what's called "industrial behavior".  As soon as there is a dish or utensil in the sink or on the counter, whether you are done with it or not, it goes into the dishwasher.  He fills the dishwasher regularly, turns it on, unloads it, and puts stuff away.  If I have an almost empty pop can, he'll come over and check it to see if it's empty - and if he thinks it's empty, it's gone!  If you put a candy wrapper, or crumpled napkin beside you on an end table, it magically disappears!  It for the most part is a very helpful thing.  Sometimes we find something missing - some silver charms I bought to make something for Michael - several small bottles of "Clear Eyes" - a new deodorant - sometimes we find them in the garbage, and sometimes we don't!  Sometimes things are put away, but he can't remember where he put them, and we still haven't found them!  He seems to enjoy restoring order in a basic manner.  Yes, dishes get broken, things aren't always the cleanest they could be when they are put away, and we sometimes have to look for them, but he feels like he is contributing.  At least I assume that's why he does it.  If I ask him to maybe vacuum the rugs, he makes sure he tells me when I get home that he did that.  It's kind of sweet.  But I really want to find something that will increase his interaction with others - something that he'll actually enjoy.  Just going to have to pick my brain a little more on that one.

He loves our two little neighbors - Z is 7, P is 5.  We've known them their whole lives.  He makes sure we have Bomb Pops for them - sometimes they'll come to the door - we call them the Bomb Pop Bandits - each day in the heat of summer, he would tell me if they'd come over or not.  Sometimes he checks to see if they're outside and go out and ask them if they would like one.  Sometimes he'll sit out on the front porch and interact with them a bit - since he's hard of hearing, he can't always follow the conversation, but while he's engaged, it brings back so many memories of him with our children when they were young, and other kids.  He could do many different animal sounds and would entertain kids for hours with that!   It was such fun! 

He is a very kind man - unfortunately part of the disease - the apparent apathy and loss of filter - masks it a lot of the time today.  But that's ok.  One great thing about having a diagnosis and doing this blog has let family members know it's the disease.

Yes, there are a lot of things I wish for.  But I also know that my family is blessed in so many ways, even with regards to this disease right now.  Ask me in five years, and I hope I'll feel the same.  I have a lot of family that care for me and my husband.  I have family members with their own struggles.  This just happens to be ours.  And so far, it's a walk in the park on a nice day - thanks to all around me. 

Chapter 4 "Curiouser and curiouser!"

This disease is such a mystery.  I called our neurologist's office today (Dr. B) to ask some questions now that I've had time to process some of this.  I asked about Dave's MRI compared to others - did it look how she would expect?  Worse then others?  Not so bad?  Is his hearing loss caused by FTD or is it coincidental?  Is his pursed breathing part of the disease?  Would she classify his FTD as the behavior variant kind?  How severe is his - what "stage" of the progression of the disease? 

The MRI is what it is.  There is no way to make a comparison.  Some people can present with lesser clinical symptoms but their MRI may look severe, others can present with many clinical symptoms, but their MRI doesn't show much degeneration.  Okay.  The hearing loss is NOT caused by FTD, it is just coincidental.  The pursed breathing?  An OCD kind of behavior - certainly not unexpected to have those kind of symptoms with FTD.  She would classify Dave's FTD as the behavior variant type, which is what I thought based on the symptoms.  And she would say he's in the mild to moderate state of the disease, in part because he is impaired enough that he probably could not live on his own.  I agree with that.  She asked if he was still driving - and he is - he had a driving assessment done last week - took about two and a half hours - I told her he did pass the test - apparently did pretty well - but we haven't received the written report yet.  She was surprised he did well, and will call us once they get the report.  She suggested we get the assessment at our first appointment, and gave us all the information with where to contact to get this set up.  It costs about $300, and will be billed to insurance, but it is doubtful it will be covered.  I am glad we had that done - it certainly makes me feel more comfortable about him driving, and it "protects" him in case there would ever be a situation where he was involved in an accident that was not his fault, but his culpability might come into question since he has this degenerative brain disease.  Such a good idea!  Hopefully we don't have to do this every year or so!

When I was making my list of questions today, I asked Dave if he had any questions.  He did ask if one day he would not be able to drive - I explained the reason for the driving assessment, and that for now he seemed to be fine to drive.  But sometime down the road, he might not be able to drive.  He asked what would happen next - I told him no one really knows - it's that kind of disease and progresses differently in everyone.  He asked if he would die from it - I said it is considered a terminal illness, and that he would probably eventually die, but again, depending on the progression, it could be years and years.  We talked a little about what the progression might look like, based on information we have in hand.  We discussed it was important to tell me about anything he notices with regard to motor weakness or problems, eye problems, etc. so we can make sure Dr. B knows about it.  He wondered if he'd still be able to think - I asked him to clarify what he meant and explained some of the problems he had so far.  "Just like I'm thinking right now - wondering what happens next - will I think like that?"  I told him what I know so far, which is that it is different with every person, but I didn't think he would stop thinking - just have more problems with understanding what was said to him, or for him to get the words out to communicate eventually.  He seemed relieved to hear after the phone call that he was in the mild to moderate stage.  And he laughed when I told him Dr. B was surprised he passed the driving test!  He seemed happy about that.  And then he put it out of his mind.  That was the longest discussion we had about it - I was glad he was able to think of questions, as he didn't have any when we were in Dr. B's office last week.  So he is processing it all, but not dwelling on it.

I accepted the ALS ice bucket challenge today, but noted it was only because of the association with FTD.  It seems that any research for ALS with regard to gene mutation will only help FTD advancement because they share a gene mutation.  10 - 15% of people with FTD get ALS.  I also noted I would be coming up with some kind of challenge for friends and family to spread the word about FTD and raise some funds for that research!  It seemed it did good work to raise awareness for ALS.  I'm looking for some ideas!  All in all, a good day's work.

Now I've got to take care of the ice bucket challenge - NOT FUN! 

Chapter 3 "I'm not strange, weird, off, nor crazy, my reality is just different then yours." Lewis Carroll

I've done a lot of reading this weekend, searching for sites and information about Frontotemporal Degeneration.  I read other people's stories about their experience with this disease; I've watched videos of caregivers and of the loved ones with the disease.  And everyone's experience is unique, including the "patients" themselves.  I've read forums where a person asked a question specifically about FTD, but the answer by the "expert" was all about Alzheimer's.  Doctors are not familiar with it - it isn't a "big" disease.  It is estimated on some sites that 50,000 to 60,000 people suffer with FTD - some sites say as many as 250,000 if you count the misdiagnosed or the undiagnosed.  The only definitive diagnosis comes with an autopsy at the death of the patient.

The stories are all heart-wrenching.  Some have suffered so much from the very beginning with more drastic exhibition of symptoms, both physical and behavioral.  The message I took from it all is that it is all a game of wait and watch.  There are no real predictions of what's to come in what order, of exactly what the progression might be - and no treatment of the disease.  If the diagnosis was cancer, it seems we'd be scurrying to get prescriptions or more tests or scheduling biopsies or surgeries or treatments.  I feel my only thing to do is to educate myself on the topic, get my head wrapped around what our family needs to do, and spread the word about this disease.  I don't do well at "waiting".  Ask my daughter!  It does give me hope that my husband's situation may be atypical.  It seems to me his disease has progressed fairly slowly thus far (and if I'm being naïve, so be it!).  Though we have no specific date in time of when it started, it is reasonable to believe it began 13 years ago.  Yes, if I pick a date 13 years ago, and today, there is a drastic difference in his personality and behavior.  But it is all pretty subtle compared to what it could be.  We are lucky he was a gentle, fairly reserved person on a day to day basis.  I think that bodes well for us.  And in 13 years we haven't seen the physical effects that can be associated with this disease.  He walks, he talks, he laughs!  And somehow in my mind, I think it will be when the physical symptoms begin to appear that I will begin to worry; that this journey will become more difficult.  In the mean time, today is no different then the last week or the last month.  Except now I "know".  And that, I'm finding, is an amazing gift. 

Today was my daughter's birthday dinner.  Her boyfriend, my son, my husband and I ate a yummy dinner, and had cake and ice cream.  And that experience was very different from a week ago or a month ago.  Because we "know" - we know this is the way he is, and somehow having a disease to blame it all on makes things so much more comfortable and easy.  We don't feel angry or annoyed with him - just with the disease.  We are more patient about showing him what to do to help.  Or how something works.  We know why he disappears upstairs after dinner.  We may be in a honeymoon period with this, I realize.  But this is our new reality - and for now, it's a better reality on a day to day basis then it was a week ago.  My husband's symptoms are no different, but we have knowledge we didn't have a week ago.  My brothers and sisters now know, and their children will know.  SO many things will be more comfortable.  I won't feel like I need to apologize for his behavior, or be so embarrassed in some situations.  I hope my children will feel the same. 

Our reality will change, I'm sure, as the disease progresses.  But I've decided not to wait or watch for something to happen.  When things begin to change, I'll know.  I've been empowered by the diagnosis.  It has given me some relief from worry.  It has allowed me to have a sense of his reality,  his inability to change how things are.  So I'm going to enjoy our life a little more as it is with my new perspective.  Not work so many nights.  Take a trip to visit our son in Florida.  It feels good.

Chapter 2 Down the rabbit hole I go

We went home after our appointment - I was a little dazed and confused.  It was so much information to take in - and so different then what I expected to hear.  My husband seemed oblivious to the diagnosis - said it sounded complicated - I heard words like "degenerative brain disease", "progression"; "no treatment"; that it wasn't the car accident at all; it probably started back further; probably has been happening for thirteen years; see an attorney about end of life instructions; see a financial planner about probable long term care in the future; everything swirling around in my brain.  The MRI pictures were so bizarre - to see his in comparison with a "normal" 53 year old brain, even a normal 86 year old brain - with my husband's in between - there were big empty places!  Places that looked like chasms!  What????  He wasn't going to improve at all - he wasn't going to stay as he was - he was going to get worse.  And I had to think about a whole new future for us.

I immediately got on line and started googling - hoping to find something about this disease - something that sounded like it fit my husband's actions over the years - almost hoping that it just could not be - they'd made a mistake - but I had to go back to work for about an hour, which somehow felt like a better alternative then sitting at home with him, watching him watch a game show.  I needed to "tell" someone - the whole idea of it was so foreign to me, I had to say it out loud to someone else to really believe it.  There were no tears on my part - it was more just trying to wrap my head around the idea.  What did it all mean?  How should I feel?  How do I tell my kids?

When I got home from work, I first talked with my oldest son - he's 32 and living with us right now.  He was a little surprised - we both agreed it was good to know what's going on.  There was some relief to know that all the frustrating things over the years, the feelings that he didn't care - none of that was his fault - it was the disease.  He has had no sense of anything being wrong.  He is content with his life as it is, only because he doesn't realize what he is missing - he'll never realize it.  And it seems that is a blessing for my husband - it seems it would be much harder to deal with his tears and distress over what the future might hold for him.  He doesn't really seem to get it.  There is grief that all I thought we'd do together in the future won't happen.  Or at least it won't happen how I've always pictured it.  Our "best days" are behind us - far far behind us.  It is hard to put aside the hope that things would get better.  Interspersed in all that is the niggling idea that maybe they are wrong ..... I guess that is what I hope for.

I did more research that night, and texted my daughter to stop by the next day after work so I could tell her about the results.  That conversation was harder - she began to cry, saying she felt so badly for me.  I explained to her that my husband hadn't really been a witness to my life for many years.  Part of his disease is a sort of apathy toward others.  I would be okay.  Along with my son, we talked about having a different perspective now, as caregivers.  That changes everything.  Instead of frustration over his actions or what he says or doesn't say, we will try harder to make moments count, knowing that today is his best day for the rest of his life.  We will all be in this together.  I emailed my youngest son about the results - he is in the service and only reachable by email. 

When I read about symptoms of this disease, it seems to line right up with so much of what I've experienced over the last ten years.  I would guess he has the behavior variant type of FTD.  But I don't know!  I've thought of many questions since we met with Dr. B.  Does his MRI look really bad?  Does it look like early stages?  Moderate stage?  Getting toward end stage?  Since this affects hearing, is it at all responsible for his hearing loss?  Is it what gives him his shuffling walk?  Or is that more likely his arthritis?  Is the pursed breathing a part of this?  He's just started to smack his lips occasionally - is that part of it?  I'm starting to wonder if I'm looking for symptoms I've read about, or am I taking symptoms and trying to find them somewhere in all the articles!  Most alarming to me is the prognosis of an average 5 - 8 years living with this disease, but can range from 2 - 20 years.....so does that mean he only has 6 or 7 years left?  That just doesn't seem possible.  I mean - he's not that bad.  If I stop and think of how he was 15 years ago and how he is today - just a snapshot in time - there is a huge difference.  If you met my husband today, he would say hello in Spanish, ask if you knew Spanish, and probably finish with "Ay Caramba!"  or "Hasta la vista, baby!"  He'd be holding your hand the whole time.  You would think he's a sweetheart, a really nice guy, and you'd probably think there was nothing wrong.  It is only through further association you would pick up on what this disease has done to him.  Sometimes I would get frustrated with comments like "oh, he's fine" or "you're being too critical."  I did not want to sound like a complaining wife - I just knew something wasn't right.

We love this man - we had SO much fun in our life together - and I couldn't have chosen a better father for our children.  We all miss who he was, the parts of him that we don't get to see anymore - and we'll be walking with him through what comes next.  We'll find the moments that are good somewhere in the unknown that is to come.  We will love him no matter what, as without him, none of us would be who we are today.

Enough for now - I'm getting teary eyes.  They just seem to bubble up some times. 

Chapter 1 Seeing the White Rabbit

It began about 13 years ago, in 2001.  Something felt different.  My husband didn't see it coming, but I did.  In 2002, at the age of 51, he was given the option to resign or be fired from a position he held for eighteen years as a case worker.  He was blindsided.  But he quickly found another job in the social services field, only to be let go three months later.  He couldn't find a job after that - how do you put that on a resume?  He worked a seasonal job at Target as a cashier - that seemed to be all he could get.  Then came the car accident in February 2003 - he was T-boned after skidding on ice - the "jaws of life" were used to cut him from the car.  He spent eleven days in the hospital - broken ribs, bruised spleen, punctured lung, nerve damage in his left arm.  After being unable to work for two months, Target wasn't interested in hiring him back - he'd been "too slow".  He found a job at a group home, working during the day with the mentally disabled, and quit that after three months, finding a much better job doing casework again, only to be referred to Voc Rehab after two or three months - a kind of "save your job" evaluation of his hearing - turned out he did need hearing aids, and went back to work, only to be let go four months later.  After that, he had a series of jobs at nursing homes- he'd make a poor judgment call and be let go after a few months, time and time again.  He did home health aide work - with three or four different companies - but many clients didn't want him back after he'd worked with them a few times.  And so it continued for the next few years.   For the last several years, he's worked a couple of hours a week with one client who really likes him. 

I blamed the car accident.  I was certain there must have been trauma to the brain even though there was no obvious head injury.  In 2006, I had him contact Voc Rehab to see if they could help him - get some testing done - there had to be a reason that things were just going so badly.  He was a college graduate!  He'd run a day treatment program years ago in another state when we were first married!  He'd supervised nurses and licensed social workers!  He met with neighbors concerned about the location of the program in a residential setting!  It had to be the car accident.  The changes I saw - the withdrawal from family - the lack of interest in what was going on in his kids' lives - the lack of interest in what I was feeling about all this - the stress - he didn't get it - and it seemed he just didn't care.  In the mean time, his hearing declined.  And he didn't seem to be able to do things he used to be able to do.  The neuro psych testing showed some deficit areas, but nothing conclusive - he should be able to find a job.  THEY JUST DIDN'T GET IT!  Something was wrong! 


Our family life was very different - my children were 15, 18, and 20 when my husband lost his job.  He was very lost after losing the second job, and they couldn't figure out what was going on either.  He was a wonderful, gentle man, kind and loving and lots of fun.  When they were young, he would sing them barbershop songs every night when they went to bed, he took them to the pool all the time in the summer - we'd go camping, take road trips out west,