Tuesday, November 25, 2014

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!


Sunday, November 23, 2014

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.



Tuesday, November 11, 2014

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. 

Monday, November 3, 2014

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.