Chapter 32 Back to my story

It's the day after Christmas and all through the house, not a creature is stirring, not even our lovely Bella!

Time to breathe!  And reflect.  I was fortunate to fly for a weekend to Florida to see my beautiful grandson, now five months old.  I can't even put into words what that was like, to hold that little guy, talk to him, make him laugh!  It was a nice treat for myself.

Then the hustle bustle of getting ready for Christmas!  Got my packages out that had to be mailed, got the tree up, wrapping done, had family over the week before Christmas - the hardest part about it all is doing it alone - without a partner - Dave and I had SO MUCH FUN getting ready for Christmas.  Dave used to play Santa at different area malls on the weekends - he knew sign language and Spanish, so he could surprise many children with his understanding of the language they might use.  And our own children would sit on his lap and never know it was him!  It was great.  And the day after Thanksgiving, we would hit the stores and shop for our kids - always on a budget - but it was a shared joy.  It's not like that anymore.  Christmas eve we went to ten o'clock mass.  I unfortunately don't go to church much anymore.  It was too much for me to sit through mass next to my husband with some of his behaviors.  Over the last year, I give him a ride, and pick him up after the service.  So we went together - just the two of us.  It was painful for me.  Embarrassing?  Yes.  Uncomfortable?  Yes.  Distracting?  Yes.  Above all, it makes me face my inability to be patient and tolerant.  Makes me feel like an awful person.  I have to face the loss and feel the grief all over again, and I hate it.  I know he can't help it, that it's not his fault.  But as hard as I try, I can't keep the anger hidden all the time - anger at the disease and what it's taken from me.  Anger at my inability to still find things about our time together to cherish.  Anger at being SO inadequate at being a compassionate caretaker of my own husband!  Who does that?  Who doesn't have patience and tolerance with their spouse they've been married to for 36 years?  If I really loved him, wouldn't this be easy?  Through sickness and in health, and all that stuff?  I am really really trying.  But not succeeding very well.  And only I know that, because only I know what is in my heart and in my head, swirling around.  Some feelings and thoughts are for myself only, because sometimes I feel I'm crossing over to the dark side.  When someone asks how Dave is doing, and I say fine - that he seems more grumpy and short tempered, and give a few examples, sometimes I hear in response, "oh, that sounds like my husband!", or "that's just because he's a man."   Really?  Come live at my house.  Come live with it 24/7.  You wouldn't be married to this person anymore.  You wouldn't recognize them, their rudeness, their lack of filter.  I can be patient and tolerant and explain why he can't do something, or shouldn't do something, or show him how to do something.  But you know what?  He's never going to grow or change from my patient explanation or demonstration.  He can't help it.  Why do I keep trying to explain things?  Because I want him to stay in our house - I want to believe he can be left alone - and down deep, I know I think something might click.  He'll get why it's important to make sure the water is turned off or why he can't just throw things away because he thinks it's garbage or why he shouldn't sign up for things he gets through the mail.  I want him to understand his health insurance that starts in January is different than what he has now.  I don't want to keep telling him over and over and over again.  Because I guess I am not a tolerant person.  I'm mad that the most cherished parts of the man I fell in love with and married and raised three wonderful children with have been stolen away by this disease.  I'm mad that it makes me feel annoyed at him.  I'm mad that I can't be the caregiver I want to be.  I'm mad that there aren't any more KODAK moments - that I can't create good memories with him.  At the beginning of this journey, just over a year ago, I pledged to make the most of each day - as it would most likely be his best day of the rest of his life as the disease progressed - but I haven't succeeded.  I haven't been able to believe that I am fortunate that he is with us.  Because he isn't.

Believe it or not, I had a nice Christmas.  This is my place to vent, to get it all out, so day to day I can try again.  It's a roller coaster ride - and I am still in a good place with myself, which makes it even more important to me to be honest with myself about how I'm feeling and how I'm handling it, and have a place to let it all out.  I am not looking for pity.  This is what it is.  The blog is my place to put it all out there, raw as it may be, so I can keep going.

There's a poem I saw on Facebook in a post from the Association of FTD.  I believe it was written by a woman who recently lost her husband to FTD.  It very much hit home for me.  I've copied it here.

The Thief

A poem by Lori Ruhlman

Well intentioned people say

"May your memories sustain you."

But they don't know loss by dementia.

They don't know that there is a thief that sometimes comes before death:

A Thief that takes someone inch-by-inch, month-by-month, year-by-long-year.

And while this thief steals greedily from the person with FTD,

it slips in and steals from those around him too,

taking their memories away one-by-one.

It reaches in and takes the finest details of what they held dear:

The feel of a touch or the sound of a laugh.  And more.

It takes memories for which there is no vocabulary, feelings too profound for labels

until all that remains are images like the flat one-dimensional memories found in a picture book.

 

So for this first holiday season without him

we won't look longingly at his empty chair at the dinner table or feel that acute but beautiful pain of his closeness

as though he just left the room.

He is much, much too far away.

 

When well-intentioned people say "May your memories sustain you,"

they unknowingly shine a light on my biggest failure, my biggest loss,

because they don't know

how long and hard I tried 

to hold onto the memories,

even as the thief came into the room.

 

 

 

 





 

Chapter 31 Rita's story

I received an email from Rita two days ago, and she has given me permission to share her story. 

"My husband Joe was diagnosed in 2014 with CBD.  He has fallen 6 times since 2012.  Three weeks ago he began talking about other people in the house and he does not know I am his wife or my name.  We have been married 54 years and I am heartsick.  He is incontinent and cannot dress himself.  He gets P/T twice a week.  We have no help as of now.  His doctor is at Cornell in NYC.  He was given 12.5 of Seroquel beginning today.  He takes 75 mg of Effexor.  He wore the Exelon patch for a few months.  Discontinued it.  He was nasty using it. 

It is 25 days today that he does not know me."

My heart goes out to her.  She needs those of us who can to reach out to her.  Please offer your support and any ideas of what you know might be available in the New York City area.  Or share your story.  Comment here and I'll make sure she knows people are thinking of her.

Anyone else out there who is looking for help and support, a phone number was shared with me today for the ElderCare locater line.   1-800-677-1116   If you call this number, they should be able to put you in touch with the closest Area Agency on Aging.  Every state has them.  The Area Agency on Aging should be able to help you with what community resources may be available to you for support and help.  I don't think anyone can make it through this journey with out the support of others on a similar journey.  I'm not as far down the road as Rita is.  It is scary of think of what's in store, and easier to not think about it right now.  But I can't ignore the fact that I'll be there one day, and I hope others will be helping me.  I have to do what I can!  Because I want people to do what they can to help me when the time comes.

On facebook, someone posted something about Alzheimer's Disease & Dementia.  They called it "Public Enemy #1."  Here is what it said: 

You can miss someone who died, you can miss someone who moved away, but the worst is when you miss someone you see everyday.

Today, for Rita, she is going through some dark days.  She is missing Joe.  Today is the 25th day that he doesn't know her.  I hope you can take a minute to share something with her, for every reader of this blog who is dealing with a loved one with some form of FTD, whether it be the behavior variant type that my husband suffers from, or CBD , or some other form.  If you know of resources in Rita's area, please let me know.  If you have a story to share, please do!  You can email me at sorodftd@gmail.com, or use the comment section here to share with all.  THANK YOU! 

More later.

Chapter 30 A New Chapter

It's been awhile since I have posted.  I've received an email from a woman with a loved one with the CBD form of FTD.  I'm waiting to hear back from her about sharing her story.  She could use some help and support, and I'm hoping someone reading her story maybe able to do that for her, including the folks at the Association of Frontotemporal Degeneration.

I'm in a better place these days.  It's been over a year since my husband's diagnosis.  Do I notice change?  I do.  His OCD tendencies, "industrial behavior", are far more evident.  His inability to comprehend written materials that come in the mail seems more serious.  Changes are subtle, and yet sometimes seem glaring.  He is grumpier.  Gets frustrated a little more easily.  I am not letting him drive at all now.  He is still suffering from the double vision, yet the latest visit to the ophthalmologist last week indicates it continues to get better.  The doctor believes it should be gone by the end of December.  However, as always, something else has showed up.  Dave apparently now has a hemorrhage in that same eye.  So that will get checked again the first week of December.

We also had his latest scan with the neurosurgeon to check on his chronic subdural hematoma.  It continues to shrink and isn't causing any apparent problems. However ...... I'm getting tired of saying that!!!  However, he is concerned about the 4th nerve palsy, considering the atrophy in his brain, so we'll see the neurosurgeon in April for another CT scan.....never ending.

I've started a new job after 30 years with the same non-profit.  It was time for a change.  I needed something adventurous and new in my life.  Something positive.  It was a great move.  I'm really enjoying learning about a new organization.  I took a cut in pay, and chose a cut in hours - 30 to 35 a week - and while things might be tight financially, I am feeling such relief.  I didn't know how poorly I felt, how depressed I was about life, until I started feeling SO good about six weeks ago.  I am so glad I took a leap of faith, took a risk.  It feels like a whole new chapter of life.  With the stress at work and the stress at home, I just could not take it anymore.  So now that work is manageable and I'm looking forward to it each day, and I really enjoy all the people I work with, home life has also improved greatly.  I'm even looking at adopting a beautiful dog that needs a home.  I feel she will be good company for my husband during the day, and the routine of her care will fit right in with my husband's ordered schedule he keeps.  And she'll be good company for me when I get home each day!  Maybe even greet me at the door!  We have a trial visit with her this weekend, and that's another thing I'm very excited about!

Life feels good.  I feel strong.  I feel positive.  It's amazing.  So it's time for me to start spreading it around.  I want to find a way to contribute to the efforts of awareness and support for FTD.  I'm ready to get back to it!  I'm checking into trying to get a support group started locally as there is nothing currently that I've been able to find. 

We'll see how long this part of the ride lasts!  But it sure feels good to be on the upswing for a change.  Stay tuned!

Chapter 29 Special Request

Left 4th nerve palsy.  That's the diagnosis. 

I received a call back from the neurologist's office early the next morning.  It was felt this was not related at all to his FTD.  They did not have a name to offer me for an ophthalmologist.  So I contacted our family doctor's office - they suggested a practice to call - which I did.  And I was able to get an appointment that afternoon.  Filled out all the paperwork - saw an optician, optometrist, then the ophthalmologist.  It was actually very interesting.  They were able to determine that when Dave would tilt his head a little to the right and up, the double vision would go away.  Tilt it to the left and up - much worse double vision. 

There is nothing to do for it - just wait it out.  We have a follow up in two weeks and it is expected it will be gone by then. 

Again, I was told it has nothing to do with his FTD or brain atrophy.  Just a random fluke.  I guess I feel like he has an awful lot of random flukes happen in his life.  It seems his body has some built in magnetism to attract strange random happenings.  A wound that won't heal, gets infected, and requires antibiotics.  A routine colonoscopy that just doesn't go quite right.  That's just in the last month.  And now this.

I am very relieved the double vision is not related to a stroke or aneurysm or cancer or any permanent problem with his eyes.  But it is very hard for me to believe it has NO relationship to his FTD.  Perhaps I just attribute everything to that.  I've been trying to research "4th nerve palsy" - it is common after head trauma - which he did have in the last year.  I WISH I KNEW MORE ABOUT THE BRAIN!

So my special request.  I guess I'm a not so wise fish - I'm looking for my porpoise - people traveling a similar journey - or with information and experiences to share.  I am feeling very alone in this journey right now.  I need some inspiration.  I would like someone reading my blog who has a loved one with FTD to share their story or their suggestions or information they may have.  If you send your story you'd like to share to me by e-mail, I would like to post it here in my blog.  I assume that most people reading this are going through something similar or looking for information or perhaps even in the field of neurology and cognitive function and decline.  COME JOIN THE TEA PARTY!  I have no sense if my experience is like others, of what's to come.  Maybe this could be a place where several experiences are shared, whether through comments or as a guest writer. 

Interested readers may contact me at sorod.ftd@gmail.com.  I hope to hear from you and share your thoughts and experiences here for others to read.  It would be only what you wish to share.  You can even tell me what you want as the title of the chapter.  Thank you. 

Later.

Chapter 29 "No wise fish would go anywhere without a porpoise."

Why the title of this chapter?  I don't know.  Maybe because it's the middle of the night.  Maybe because it makes about as much sense as my life and this disease. 

Can't sleep.  Just when I thought things were on more of an even keel, my husband began experiencing double vision mid morning today.  Who do I call?  Our neurologist?  An eye doctor?  Our family doctor?  The neurosurgeon?

I started with the neurologist and left a message with her assistant, asking if this was probably related to his FTD and brain atrophy and who should I call?  Then called his eye doctor to ask their opinion - was told it sounded neurological and to wait to hear back from our neurologist. Left a second message for the neurologist.  Later called our primary care physician's office - who, by the way, recently moved to an administrative position so we have a brand new doctor to start over with in the practice - and spoke with the administrative assistant there. She was very helpful and indicated an urgent care center or the ER was the way to go, as it was late in the afternoon and they could not fit my husband in today.  She arranged for us to go to a same day center with imaging services on site.  This center would have access to my husband's records, which sure would make things easier.

We headed over there and got in quickly.  Ended up getting a CT scan to make sure it wasn't the subdural hematoma growing and rearing its ugly head again.  That came back looking pretty good and ruled out that.  So what now?  Tomorrow - or I guess this morning - I need to get him in to see an ophthalmologist.

While we were in the waiting room, I googled his symptoms on my phone.  My gut feeling is that the brain atrophy had just finally chipped away at a particular brain cell, turning off some particular function in his brain.  The double vision is not side by side - it is up and down.  So he sees, for instance, a road sign right over top of the same sign.  When he covers one eye - either one - his vision is fine.  When he tilts his head to the right, no double vision.  When he tilts his head to the left, no double vision. Weird.  I asked him all these questions while we were waiting for the CT scan.  These were all from a website I'd googled. 

At home, I googled "brain atrophy and double vision" and got a new set of scary things. I think it all points to progression of his disease.  After a year of no real obvious new symptoms since diagnosis, here it is.  Ugh.

I hadn't posted in a while, but when thinking about what to write about next, I thought of how we didn't have to have a six month follow-up with our neurologist and how that made me feel very alone in this journey with FTD.  I thought about how we are on an "as needed" basis - well, frankly, I think we need at least every six months - at least I do.  I constantly have more questions, and I think I need the support.  I'm not sure I'll notice changes - not sure what "significant" changes are - mostly not sure I want to wonder about all this alone.  I guess now we are seeing a significant change - at least that's what I think we're going to find out.  I think we're ruling causes out at this point.  And I may be jumping the gun.  But I don't know.

So - couldn't sleep - too many "what if"'s rolling around in my head.  So I'm on my blog - my journal of this ride.  More tomorrow.

By the way - my favorite new role - GRANDMA! To a beautiful little boy born July 19.  What a joy! 

Chapter 28 "Who in the world am I? Ah, that's the great puzzle."

I'm struggling with my every day role, or should I say roles, in my life now that for the most part things are back to normal.  Though I'm a wife, it's not in any typical sense anymore - not a partnership - so I'm trying to work that out.  And though I'm a mother, it's different with grown children and not a daily role.  And I'm a sister, but after months of dependence on my sisters and brothers to make it through the days, weeks, months, that is not the main headliner these days.  The active role of daughter has been retired.  Yet "orphan" doesn't quite fit.  I work forty hours a week, but that role has changed over the last several years after a merger, and has changed significantly over the last six months, so I'm still figuring that one out.  In my 30 years there, I climbed the ladder from the bottom to the top, and now I'm going down the other side - by choice, at least I think it was my choice! - giving up any leadership role or supervisory role in order to allow more energy for the rest of my life roles.  I guess I think my starring role right now is caregiver. 

I'm back to focusing on my husband and his disease.  Starting to research again.  We are coming up on a year in July since his first visit to his neurologist and in August, his diagnosis.  After living with this knowledge for almost a year, I find myself wondering what to do now.  Dave doesn't need care in the typical way.  His daily living skills are in tact.  The "symptoms" taken one by one are not uncommon among many people, and sometimes I find myself second guessing his diagnosis.  Maybe he's fine and just getting old.  Maybe there is no reason for concern.  Maybe his brain had atrophy a long time ago and has just been holding for along time and will continue to do so.  His decline has seemed slow.  But as I have more time to spend with him and observe him, I know there's something missing, a part of him is gone.  Or maybe it's that he seems to be in his own very small world and he doesn't "need" us to be satisfied with his life.  I just don't get it.  It is so frustrating that he would be "happy" with how things are - watching game shows all day; no significant interaction or conversation with others, including me.  No depth to his life.  But maybe that's my problem - not his.  Maybe it's me reflecting on things that are missing from MY life - I don't get to sit and watch tv all day;  I don't have significant interaction with him.  I don't feel a depth to our relationship.  So it's missing for me - but not for him.  I don't know. 

Over the 4th of July, we went to the parade and sat with family and friends, and later went to a block party at a neighbor's.  There was a beautiful little girl - 7 months old - that he was commenting on - and then he said he doesn't remember when our children were that small.  That stabs at my heart, brings tears to my eyes.  I know it's a filing problem in his brain - if I find the right prompt or trigger - or some pictures - he'll be able to find the memories - it's not that they are gone - just misfiled.  I need to get all our photos in photo albums so he can look through them and find those memories.  That's the kind of care I need to provide.  In conversation with some new neighbors, Dave was talking Spanish, trying to clarify who lives in which house - in my mind, he seemed a little eccentric, a little loud, a little over the top.  And when he left the gathering, for some reason, I felt the need to explain to these new neighbors that he has a degenerative brain disease.  One gentleman said no need to explain, Dave was perfectly charming.  But what I witnessed was their chuckles at some things Dave said, some comments that somehow pricked me.  In thinking back, if I wasn't aware that Dave had a disease, if I hadn't known him for 38 years and how he used to be, maybe I wouldn't have felt he was odd.  I guess I was embarrassed.  And that is sad. One of the gentleman made the comment that it was a good thing Dave had me along, because he was constantly having me fill in the parts of conversations he wasn't sure of - like how many years we've lived in our house, how many years we've been married, how long since he worked, when we moved here, what I do for work, etc.  That's not so unusual, right?  It is more the way he says it.  Another gentleman commented it was like watching a comedy show - they were not being unkind or anything like that.  I just took it that way.  A little sensitive, I guess.  I guess one of the awful things about the disease is right now there is no obvious symptoms, like an arm missing, or a hole in his head, or whatever.  The whole issue right now for me is that he's not the man he used to be.  So much of the depth that made him who he was seems to be gone.  Yes, he is still a kind gentle man.  But a lot of him is missing.  Or I'm missing those parts of him that aren't evident any more.  But that's normal, right??  People change.  I don't know.  Maybe it is all just normal progression of aging.  Not.

I guess I just wait.  And watch.  And wonder what's to come.  Part of me wishes things would move along, so I would have validation of the diagnosis, validation of progression.  Why would I want that?  Part of me wishes I didn't know about this diagnosis.  Have I given up hope?  Am I expecting less of him, and in return getting less? 

In my heart, I know he has this disease.  I know the information I read about the behavioral variant type of Frontotemporal Degeneration fits so amazingly to his symptoms, it must be true.  But I don't know what to do for him - and I miss him - the full person.  It brings to mind our wedding vows - I take you to be my husband, loving you now and always.  I will love you when we are together and when we are apart, when life is peaceful and when it is in disorder, when I am proud of you and when I am disappointed in you.  I promise to be open and honest with you always, and share your dreams and ambitions and help you to fulfil them.  I make this commitment of love, faith, and hope, believing that God is in the midst of it all.  Nothing about "in sickness and in health" stuck in there, but the commitment is there.  The sickness right now has resulted in no dreams or ambitions - he just doesn't have any.  Life is not really peaceful, but it isn't in disorder.  How can I be disappointed in him?  This isn't his fault.  This whole middle ground - this neutral territory - this waiting - I am not certain what to do with it.  I'm rambling.  I need to be thankful for each day, and thankful that he is maintaining and stable.

As far as my everyday life - I'm feeling less unbalanced - much lighter.  Making a quilt for my first grandchild, due in a couple of weeks.  Doing some things I enjoy.  Laughing more.  That is feeling good.  I need to keep moving forward while I can - do some things for myself - and not feel guilty about that.  It will make me a better caregiver.  Ugh - I don't like that word - caregiver - that seems one role I'm not certain I can manage.

Chapter 27 "Alice had got so much into the way of expecting nothing but out-of-the-way things to happen, that it seemed quite dull and stupid for life to go on in the common way."

It has been a long, long couple of months.  Life goes on.  My father passed away April 10 at home.  We had a wonderful service for him with bag pipes, family all together, lots of grandchildren and great-grandchildren, military honors.  Best of all, there was a letter to us all - at least that's what it felt like.  My next to youngest brother came across a letter my dad had written to him when he was away at his first year of college, and he had one of his daughters read it at the funeral service.  It was as if it was to all of us.  It revealed to me a more honest and thoughtful side of my dad that was touching.  It was one of those letters we all want to write to our children about life, about mistakes we made and about our children doing better - being better - then we are.  A perfect gift for all of us.

Today a young couple moved into my dad's house!  I can see lights in the window - I can imagine the excitement of the first home - painting, planning, decorating - new life.  It makes me smile.  And it feels like life might get back to normal now.  The last eight weeks have been a whirlwind to work with my father's second wife in getting his affairs wrapped up, clearing out my dad's house, dividing up belongings in a "fair" way between eleven siblings - and I'm not done yet!  But getting there. 

Back to normal - which means having more time - more time to dwell on my husband's disease and begin to wonder all over again what's in store for us.  He had a follow up CT scan a couple of weeks ago.  His subdural hematoma has reduced in size 80%.  So we have a follow up CT in six months, and hopefully the last 20% will have been absorbed and things will look back to "normal".  I guess one advantage to these CT scans is to be able to see if more atrophy has occurred.  How bizarre.  I would have never expected to be wondering about these things a year ago.  In August, we'll be coming up on one year since diagnosis.  He had another driving evaluation two weeks ago at the six month point since his seizures after his fall in November.  He did ok.  It was with reservation that he can drive again.  He is not to drive at night, or on the highway.  And he must be supervised for several weeks before he can drive on his own.  So we're working on that.  I'm not certain how I'll feel about him driving again alone.  There is a part of me that can't wait til he can drive himself to the senior center about a mile away for his daily exercise, or to the grocery store about a mile away to pick up some things he needs or notices we're running low on.  Since I've been back to work for a couple of months, most days I get a phone call or two from Dave, letting me know we need something from the store - and when I get home from work, first thing I'm asked is when we might go to the grocery store.  And I'm asked repeatedly until we go.  Unfortunately I am having a hard time answering that same question everyday in a patient way.  At the same time, I need to step back and judge if I really think he is capable of driving safely.  It is not a matter of him getting lost.  That is not a problem, at least for now.  It is more being able to judge distance, turns, parking - making sure til he's used to driving again that he doesn't adjust the radio station, or the mirrors or the windows.  It is tough.  AND NO FAIR!

What is fair?  Not a lot.  I struggled a lot with what was "fair" in dividing up my father's household property.  And what is "fair" is actually so subjective!  I often feel my life isn't fair - my "normal" isn't fair - and yet, I wouldn't trade places with anyone I know, because while their lives may seem less complicated, I don't want their concerns or troubles.  The concept of "fairness" seems overrated.  A lot of life is luck - and I feel we are all lucky at different times and in different situations - and when we're lucky, it probably appears unfair to others!  And if we're REALLY lucky, we are blessed with a temperament that doesn't stress over what is fair!  Sometimes lately I've felt like I'm in a competition for "who has the saddest life story?"!  I definitely don't - but when mired in daily life - in adjusting to my "normal" again, I've thrown a few too many pity parties for myself.  It is amazing how healing it can be to stop and breathe - to clear my mind of stressors about work, my husband, my children - to not sweat the small stuff, to not worry about things I can not change.  I am hoping with practice and daily commitment to take a few minutes to breathe that I will re-balance my perspective and get back to being a positive productive person and uplifting of others.  Because when I get right down to it, I am blessed with many things in my life - I have more then my fair share of blessings! 

Each person's challenges - demons - burdens - are unique - we all have them.  I share my feelings here to help myself, but mostly to touch someone else who may be struggling with similar issues - or similar pain - I somehow feel I must choose words carefully - like using the word "issue" instead of the word "pain".  Reality is my life is painful at times - I can't pretend it's not.  I can't wish it away.  I can't deny it.  But accepting it, owning it, putting it in perspective, and finding the time to enjoy life and take care of myself so I can face the challenge is what I need to do to get by.  Like we are all doing!  And in contrast, my blessings are many, so many - and a grandchild in the next month!  Somehow I seem wired to get caught up in the negative things - so it will be purposeful on my part to concentrate on the positive.  My husband doesn't have to worry about all this - his FTD successfully seems to blunt any feelings of inadequacy, inability, concern and worry over the future.  I am not so blessed in that regard!  But I'm learning to not dwell on it all. 

In July, it will be one year since my son's wedding celebration, one year since we first saw Dr. Bruns and had Dave's first MRI.  In August - one year since we got some answers and came up with more questions.  I'm interested in returning my focus to raising awareness of Frontotemporal Degeneration, working on a plan for the future, seeing where this journey takes us.  Looking forward to what the next year brings.

Chapter 26 "The time has come, the walrus said, to talk of many things."

My father is dying.  He is probably in the last couple of days of his life.  It has been a rough few weeks for many - my children, my sisters, my brothers, their families, my father's wife, and the list goes on.  It has not been a quiet, peaceful journey for him.  It has been ugly and painful to witness, as it has been going on for some months.  A roller coaster ride - good days and bad - I don't think my patience and emotions have ever been tested so much. 

While I am fortunate to have this time and be able to help care for my father, I do not like what I've discovered about myself in the process.  But that is something I'm going to keep to myself, because to put it in the written form will cement it in my mind forever.  I hope that time brings back a balance to my life that allows me to put some of the low points behind me and dispel the painful thoughts and feelings that have shown themselves in recent weeks.

My father is a good man.  He is a retired Navy commander - not one for caring and affectionate exchanges, or for high praise or approval, deserved or not.  He says what he thinks, often not filtering for how it might hurt.  One of his mantras when I was growing up was "I may not always be right, but I am never wrong."  And yet he is a brave man, fighting in World War II as a submariner; was a naval aviator; an engineer; a faithful Catholic, and a father of twelve.  I have so many wonderful memories from childhood, and he did something right and has given me eleven siblings, each unique and different.  Plus he and my mother raised twelve children!  Twelve children!  There should be a medal for that!  My mother died just shy of their 50th wedding anniversary.  My dad took such loving care of her for the last couple of years of her life when she had breast cancer.  She died at home.  I remember him lying in bed with her, talking of their courting the day before she died - we were privy to this only because of a monitor that was set up to keep "ears" on mom in her last days.  It felt a sacred moment.  She went to sleep on a Tuesday, and died on a Wednesday.  It was short and peaceful.  I guess I thought my dad's death at home would be the same.  His has been a battle - he's cried out surrender, but that has not happened yet.  I believe for the first time, my dad may be feeling fear - fear of what is on the other side - fear that there is nothing - fear that when he breathes his last breath, that's it. 

I believe that each of us in my family had very different experiences with our parents, depending on our gender, temperament, and birth order.  I'm one of ten middle children - fifth in birth order.  I remember a happy childhood - always a new baby on the way - little ones around to take care of and love - always someone to play with.  Wonderful memories - Christmas; Dad reading poems at bed time; Dad taking us out on the boat and teaching us to water ski; Devon pool all day every day in the summer; sharing a room; Ghost in the Graveyard; Kick the Can; Hide and Seek; singing; "plug ins" after dinner.  I had to learn to be flexible, not sweat the small stuff, to be independent, to find work.  I learned the things I didn't want to be as a parent - and yet I often heard myself sounding just like my mom or dad.  I have a feeling that is a perpetual challenge for each generation.  But what I'm trying to say is that despite my dad's shortcomings that have been especially evident since my mother died sixteen years ago, I got an amazing foundation for life, and eleven strong interesting sisters and brothers, thirty plus nieces and nephews, and fifteen plus great nieces and nephews.  I got to learn to get along with many personalities all under one roof - all different ages - males and females.  What I might not have gotten from my parents busy with twelve children I got in spades from my siblings.  And I don't think I would change any of it.  Because it would change who I am now - and I think I turned out pretty well.  I wouldn't want to have a vote on it at this particular time in my life!

Maybe I'm viewing it all through rose colored glasses, but I think I'm more realistic then that.  Plus I now have my own parenting mistakes for comparison.  I think my dad did well.  And his greatest gift of all to me is my brothers and sisters.

So, dad, if you're able to read my blog when you've taken your last breath on this earth, know that you are loved, and in fact you'll live on in all our hearts - and in our personalities and temperaments and traditions and parenting.  We've all learned lessons from you that have shaped our lives and made us who we are.  Thank you!  I love you.

Chapter 25 "Jam tomorrow and jam yesterday, but never jam today."

I’m still here, but yet I’m gone
I don’t play guitar or sing my songs
They never defined who I am
The man that loves you ’til the end
You’re the last person I will love
You’re the last face I will recall

And best of all, I’m not gonna miss you
Not gonna miss you

I’m never gonna hold you like I did
Or say I love you to the kids
You’re never gonna see it in my eyes
It’s not gonna hurt me when you cry
I’m never gonna know what you go through
All the things I say or do
All the hurt and all the pain
One thing selfishly remains

I’m not gonna miss you
I’m not gonna miss you

These are the words to a song Glen Campbell wrote before he hit the last stages of Alzheimer's.  I heard it for the first time on the Academy Awards show a few weeks ago.  It was up for an Oscar.  I had to google it to find the lyrics, and when I read them, I cried.  Silly me.  But it so hit home for me with my experience with my husband's FTD.  I read the lyrics to my son, and started to choke up again.  It brings to heart all the things I'll never have with him again, all the things my kids won't have.  And he doesn't have any sense of how this all affects us and changes our lives.  I should be embracing this fact - that he won't feel guilt or shame about his condition.  I know my father struggles with what we are having to do for him to keep him comfortable and take care of him; he feels guilty about still being alive, about this last chapter of his life being such a slow decline, worried he has become a burden. 

My husband is doing well at this point.  We are not able to get in for a second opinion until the same week as our follow -up appointment with our original surgeon.  My main concern was waiting three months, but if this new neurosurgeon doesn't see anything urgent in the information he has that requires immediate intention....then maybe all IS well.  Early in May, Dave will have another driver's evaluation to see if he can resume driving.  I would like him to be able to drive - but I would feel most comfortable with a limited range - like to the grocery store, the senior center, church - nothing that requires highway driving on his own.  We'll see.  I wonder if he'll pass. 

My father is dying a rather slow miserable death.  That has been taking a lot of my time.  Though at times it is exhausting and overwhelming, I'm glad I'm able to help.  My husband, Dave, in his naïve way, commented at a meeting with my in-town siblings while we were trying to arrange coverage and care for my dad - "he needs to die so he can rest in peace and not be worrying about all this, and so all of you can rest in peace, too."  The look on my sister's face when he said that was priceless!  He said what I think all of us have had run through our minds at one time or another.  Only Dave could say it out loud!  It has been a blessing to have lots of brothers and sisters - two brothers were able to come to town and take five and six day shifts to share in the care.  Two sisters here in town, and two brothers are helping - with seven of us sharing the burden, it has lightened.  And the others are offering support from far away.  It is tough to realize we can't do it all - that outside help is needed - that none of us are super heroes.  But all together - we have done pretty well.

I don't know how long my dad has - I really did not think he would still be alive after how poorly he was doing last November and December - but he rallied!  And just this past weekend, has taken a tumble after being on hold for awhile.  Maybe he will rally again.  I don't know.  So many things we don't know - and things can turn on a dime.  Expect the unexpected.  It really is true.  Life is full of surprises - some good - some bad - so we have to hold on to the good ones and let them carry us through the bad ones.  I wouldn't mind a run of good surprises in the near future.  I hold on to the dream of my little grand son to be born in July - that will start a whole new chapter in my life - add a whole new wonderful dimension.  Can't wait!

Chapter 24 “Imagination is the only weapon in the war against reality.”

We had our MRI, and our neurologist called us that afternoon with concerns about what was reported.  She gave us suggestions on what we might ask the neurosurgeon at our appointment the next day.

We saw the neurosurgeon - I think he was in the office for maybe two minutes - said it was a little smaller, so we would just do a follow up in three months.....I was so surprised by the fact we were not scheduling surgery that I didn't really ask any questions.  My bad.

Even though two weeks previously Dave needed surgery that was delayed for two weeks at my request, apparently the hematoma was slightly smaller.  That was of course good news - no surgery and the hematoma was getting smaller.  But three months seem a long time for any follow up.  I contacted our neurologist and gave her the information.  I requested the written report from the CT scan be mailed to us.  When it came, yes, the radiologist reported a slight decrease in the size of the hematoma, but an increase in the size of the subdural hygroma.  To me, that doesn't seem to be the best situation.  Will the hygroma go away eventually?  In the mean time, there is still compression of the brain between the hematoma and the hygroma, isn't there?  And with Dave being able to resume all normal activity, three months seems like a long time for a follow up CT.  I guess I thought maybe a month? 

This feels like I'm between a rock and a hard place.  I'm glad he doesn't need surgery right now - he seemed relieved.  But I feel very concerned that he is walking around with this moderate subdural hematoma.  I guess there's no pleasing me. 

At this point, we are scheduling a second opinion to have another neurosurgeon who Dr. B recommended to take a look at everything and meet with us.  We received all of our current neurosurgeon's records, including a copy of a letter he sent to our primary care physician.  The interesting thing is the radiologist report from his office on the CT scan mentions different measurements in the size of the subdural hematoma then his letter to our family physician does!  The letter mentions a smaller size then the radiologist report.  And there is no mention of the hygroma.  And this could all be perfectly normal practice in the medical field - these reports are meant for doctors - not me.  THUS IS THE DANGER IN BEING AN ARMCHAIR DIAGNOSTICIAN!  I don't even know if it means anything - but I've read and researched enough that it all makes me wonder and question.  I would probably be better off if I didn't try to figure this all out!

The doctor we have been referred to for a second opinion seems to excel in his communications with families - I will have my questions all prepared, hopefully get all this explained to us, and feel comfortable with the three months til follow up.  It's a little crazy the way I ask SO many questions and feel the need to understand all this.  But I know in normal circumstances, in a person without brain atrophy, a person would probably be displaying some neurological symptoms and require surgery.  In this case, the curse of FTD and his brain atrophy is actually a blessing.  I want to understand why Dave isn't having symptoms.  What happens with the hygroma?  Does it need to be managed?  Will the midline shift just stay that way and if so, are there any long term effects from it?  Will his brain re-expand?  Is it ok if it doesn't?  Is three months the normal course of follow up? 

I'm looking forward to talking with someone willing to answer my questions and explain all this to me!  I can be a pest, I know.  But all for a good reason. 

Yesterday was a special day for us - my son and his wife found out the gender of their baby they are expecting in July.  Dave and I went over to my dad's to Skype with my son - friends of theirs were having a "gender reveal" party.  My dad thought it sounded like a fun idea, and I wanted him to get to see what his latest great grandchild will be!  We got all set up and were anxiously waiting for Michael and Jordyn to open the box that would hold either blue or pink balloons!  My dad asked Dave if he was excited to be a grandpa, and whether he thought it would be a boy or girl.  It hurt my heart to hear Dave's flat response of "yes, I guess so."  While I know in my heart that deep in his brain somewhere and certainly in his heart and soul, he is excited to be a grandpa; he just can't express any kind of emotion.  There was no excitement, no anticipation of the reveal of boy or girl, nothing.  It is the tiny moments like that, that happen in a day, moments that should evoke responses of joy and love and excitement - that don't - that pick away at me and remind me of how much I miss him and how he used to be.  I miss sharing these big moments with someone.  Yes, my sisters and brothers all reach out.  But that's not the same.  Not the same as lying in bed at night and talking about how much fun it will be - how great of grandparents we'll be - how we'll make a nuisance of ourselves trying to visit this first grandchild.  It just isn't going to happen that way.  And maybe that's not how it would be happening  if all was well with Dave!  Maybe I'm romanticizing all this.  I just don't know.  It has been so long since we talked about these kinds of things, since I've had a real partner - this disease has been affecting him for at least fourteen years.  I'm still adjusting to being "alone", but not really by myself. 

I don't need any time to adjust to being a grandma in a few months!  I imagine it will be such fun, and something to look forward to on some of my darker days - a bright star in the future.  Twinkle, twinkle, little star - how I wonder what you are - it's a boy!!! 

 

Chapter 23 "My dear, here we must run as fast as we can, just to stay in place. And if you wish to go anywhere, you must run twice as fast as that."

Just about six months since diagnosis.  Bumps along the way.  Almost six months since I started this blog.  It has helped me to put thoughts down, to reflect on all of this change in our lives.  Lately it seems to just have served as a journal for the last couple of months as I've navigated new waters and it has strayed from my original ideas of what this blog would be.  I wanted to share my experience with frontotemporal degeneration beginning with diagnosis in the hope that others would find it helpful to them.  I have access to statistics on BlogSpot, showing the number of times my blog is viewed, which posts readers have "clicked" on to read, which countries readers are from, and how my blog is accessed.  I've been pleased to find that the majority of readers are accessing my blog through the Association of Frontotemporal Degeneration website (theaftd.org).  I hope readers are finding this helpful. 

I would appreciate any comments you might have - about this blog, about your experiences with FTD, about any information you think I would find helpful, any tips on how to get through this with a good frame of mind.  I know I'm still early in this journey.  I've found I'm growing weary of it with the new developments from the chronic subdural hematomas.  I don't seem to have the time to stop and take stock of life, to remember that today is the best day Dave is going to have, to take advantage of the knowledge and make today count.  I'm spending time researching, on the phone with the insurance company and all the doctors and groups that we're getting bills from now, arguing that the fact the doctor on the neuro critical care floor for two days during Dave's second hospitalization isn't on our insurance plan should be overridden by the fact the hospital is on our plan - but this particular doctor won't accept the allowed amount from our insurance company, and is requesting full payment for the amount billed - which sets me to raging about the greed of this doctor, and the fact that the hospital shouldn't contract with a group of doctors that won't accept the allowed amount from insurance companies, especially when a person has no control when entering the hospital of knowing who might be on for the day.  Medical bills are mounting from three hospitalizations, and we have another one coming up.  I get to wondering about the third hospitalization and if there were any doctors that time that weren't on our insurance, and what about this next hospitalization?  I am angry about the lack of control over any of this - too many things are out of my control right now.  I worry about my job, and the fact my family medical leave is running out soon - what do I do if/when Dave has more issues?  I'm the only breadwinner.  I worry about the financial aspect of his current health issues, as well as the long term prognosis of what seems to me to be a constant recurrence of the subdural hematoma.  Does all this make the prognosis for the FTD worse?  Shorten his life?  No definitive answers, I know.  Just some of the myriad of thoughts circling through my brain.  Thinking for two, since that very part of Dave's brain just doesn't function well.

And yet, just getting this all down some how brings into perspective how much worse this could be.  We have insurance, we have a roof over our heads and food on the table.  I have family who are supporting me through all this, and a wonderful advocate in our neurologist, helping coordinate care and helping us make decisions.  I still wish to run away some times.  At a time when many turn to their faith for strength, I am feeling angry.  I know bad things happen to good people, and that God isn't responsible for all this.  But I'm wallowing right now.  I pray, but it doesn't bring me peace at this time.  I need to get past the next couple of weeks, get Dave as healthy as he can be, get back to work, get back to some kind of more normal.  Nothing about right now seems normal, or I guess I just can't accept it might be my new normal.  It can't be how it's going to be from here on out.  So I have to keep telling myself it could be worse....it could be worse.  I know this to be true.  I just need to get to the other side of the brain injury problems.  I just need to breathe (I'm realizing I use the word "just" a lot...??).  I know I said 2015 had to be better then 2014.  I'm changing the calendar!  I'm picking June as the new target for this being behind us.

I want to get back to making this blog about positive things - about proper perspective - about enjoying this life - to raise awareness of FTD.  I need to get out from under the little rain cloud that seems to be following me!  Because life IS good.  We had an MRI today, a CT scan tomorrow, and a meeting with the neurosurgeon to schedule our next surgery!  My "to do" list is different then most - but certainly very interesting and challenging!  Keeps me on my toes.

Chapter 22 "How puzzling all these changes are! I'm never sure what I'm going to be, from one minute to another."

The latest CT scan showed no change in the size of the subdural hematoma, but surgery will be required to remove the blood that is there.  I have found quite a bit of information on line about managing this type of chronic subdural hematoma with continued recurrence.  There is no "best practice" or specific protocol, especially when the client is asymptomatic - Dave doesn't have blurred vision, headaches, weakness on one side.  The recurrence is most likely because of the cerebral atrophy he has - there is room for fluid to build up.  His brain still has compression, he still has some midline shift - which seems it should be causing neurological problems, but none are apparent.  With the atrophy, the bridging veins to the dura mater have been stretched and are more likely to tear.  I'm wondering if the compression has done the same thing and perhaps stretched and torn other veins.  Plus, how long can a brain stay compressed with no injury?  These are some of the questions I haven't been able to find answers to.

The neurosurgeon agreed to watch his condition for two weeks and do another CT scan.  This is a more conservative approach then having surgery right away.  In the mean time, Dave can resume light activities and go back to exercising.  I asked about waiting for two weeks because of several reasons.  If the size of the hematoma is the same as it was after his surgery and is not causing any new neurological problems, I want to see if the size is increased over two more weeks where he is resuming more activity.  If it does show increased size, my assumption would be that increased activity makes it bleed more.  And it will be more likely to happen again after the next surgery.  If the size remains the same, I feel like it means perhaps the torn vein is healing and recovery can happen - maybe this would be the last surgery!  I feel I can't plan more then two weeks at a time because of too many unknowns. This is my new normal - day to day - never knowing what is going to happen.  I am to watch for headaches, or weakness on his right side, as the subdural hematoma is in the left side of his skull.  Should I see any symptoms, I'll call the neurosurgeon's office and he'll probably have surgery right away.  For now, I'm assuming it will be the a couple of days after our next CT scan Feb. 11.

Somehow this is all starting to settle in and not causing me to panic anymore.  I'm getting used to it.  I'm feeling more confident with the information I've been able to find, and the realization that the more informed I am, the more I can advocate for Dave to get the care he needs.

We met with Dr. B today.  It has now been six months since diagnosis.  She spent over an hour with us.  She is always so generous with her time and we never feel we are being rushed out of there.  Dave completed the SAGE test in the waiting room.  This is a tool developed by OSU to gauge dementia and cognitive decline.  His score was significantly lower this time - a 9 vs 15 at his last visit.  It is hard to know how much of the decline is the FTD and how much is the fall and the chronic subdural hematoma recurrence.  So in fact he may not be asymptomatic with regard to the hematoma.  I was very aware of the trouble he was having completing the paperwork, when in the past it has not been much of a challenge.  It was the first definitive indication of something - just not certain of what.  Dr. B indicated a second opinion regarding the subdural hematoma management was not out of line, especially when dealing with the brain.  She works with three neurosurgeons right there in her group and will ask them to take a look at the CT scans.    It seems it would be practical to go with one of the neurosurgeons in her office as communication between the two would be instantaneous.  Though the FTD and the management of the CSDH are two different issues, they certainly are intertwined.  It would also be comfortable as we really like and trust Dr. B.  The other neurologist involved in this, Dr. L, is a seizure specialist.  Dr. B and she are in the same practice also, though at different locations.  They know each other well, so that lends itself to coordination of care on these matters.  It sounds like this CSDH will resolve itself.  Our plan for now is to see Dr. G, the neurosurgeon who has done the previous surgeries, next Wednesday for another CT scan and go from there unless I hear from Dr. B's office that there are other options.

Dave has gone back to exercising at the senior center three times a week for now.  He is only going for half an hour.  Once again, when I went to pick him up after the first time, the folks there were so glad to see him!  They had sent three cards over the last month, telling him they were thinking of him and to get well soon.  I got teary eyes.  I am so thankful for them all.  They accept him as he is, and enjoy his talking in Spanish - he has Spanish names for all of them - talks loud - has them all laughing and enjoying themselves while they exercise.  It is great!  We met with an attorney to take care of power of attorney, healthcare power of attorney, and wills.  I'm looking into a grant available through our county for caregivers, hoping to get Dave into adult day care maybe two days a week to see how that goes.  I'm going back to work tomorrow, at least part time for now, as the afternoons are still spent helping take care of my dad.  So the rest of this week will feel a little more routine.  I work just a few minutes from home, so if Dave has any troubles, he can easily call me.  I'll check on him mid-day, and then be down the street at my dad's.  We'll see how this goes - then next week, if he has surgery again, we'll be back to a different routine for a week or so - and then, adjust to a new routine again.  I think I'm actually looking forward to getting back to work!  I know there's a lot waiting for me - and a few days from now, I'll probably be looking forward to another switcheroo!  But I know what's happening tomorrow.   I could get used to that. 

Quick addendum to Chapter 21

Dave was released from the hospital on Sunday.  The CT scan on Saturday showed more fluid accumulation since the Friday surgery - but just a small amount.  CT Sunday morning showed the same accumulation - no increase in volume.  There is no clear indication of where we go from here.  Dave's brain has a midline shift to the right - 4mm compared to 14 mm with the previous subdural hematomas.  His brain has still not expanded to fill the space in the left side of his brain, and there appears to be a small pocket of air.  We have a follow up CT scan in nine days, and will see the neurosurgeon at that time.  Two weeks from today we have our six month checkup with our neurologist.  By then, I hope to have a picture of what the near future looks like.  I want to know how much the brain atrophy from the FTD is contributing to this continued bleed, and how these last few weeks and the current state of his brain might exacerbate his FTD.  Maybe it will be stable by next week.  I can only hope!  But I have a feeling there will be no clear answers. 

This recovery for Dave is tougher - he has some pain because of the location of the latest burr hole - his seizure medication has been changed to Keppra from Dilantin.  He's pretty sleepy throughout the day.  Moving very slowly.  Watching everything he does so as not to exert any undue pressure on the brain - no bending over, no lifting or pushing or pulling.  Just sitting.  Better today then yesterday, but still seeming about three steps back from where he was. 

Plan to post in two weeks after the visit with the neurologist, who I'm hoping will pull all this together for us so we can have a roadmap for the next month or two, bumpy as it might be, and filled with detours! 

Chapter 21 Back to the tea party - AGAIN!

Dave had his follow up appointment on Wednesday with the neurosurgeon.  His CT scan showed another subdural hematoma on the left side.  Another surgery.  Today he had a third burr hole drilled to remove this one.  Brief consultation with the doctor afterwards - all went well - the surgery actually only took 22 minutes.  That to me is amazing.  The doctor did indicate that it is likely he'll need this again.....said we would discuss later.  He has another CT scan tomorrow.  Then we'll know more.

While the initial fall and seizures were separate from his FTDbv, this continued problem appears to be directly related to the brain atrophy.  The neurosurgeon confirmed his atrophy is pretty severe.  With all the room in there, the original bleed from Nov. 22 continues to drip.  I wonder what this means - this can't be good for a compromised brain to be subjected to this pressure, to be pushed around in the skull to one side or the other, to be under anesthesia two times now in less then three weeks, and the possibility of more.  He now has three holes in his head - and it would seem that these surgeries must be somewhat traumatic to the brain in and of themselves. 

I've read recent articles on studies done regarding prognosis for those presenting with significant atrophy at the time of diagnosis.  I don't know how the studies' ratings of "significant" compare with Dave's significant atrophy.  Prognosis in the studies showed five years survival.  In my mind, I wonder how long this can go on if this chronic subdural hematoma situation continues and how it might skew Dave's prognosis.

On the other hand, the only definitive diagnosis of FTD happens with biopsy at death.  So all this worrying and wondering could be for nothing, right?  He could have something else.  And it's taken fourteen years to get to this point.  I have contacted Dave's neurologist that diagnosed the FTD to make sure she knows about the last two months because we have an appointment with her Feb. 2, and I have a loooooooong list of questions!

It is what it is. 

More later. 

It Is What It Is - Frontotemporal Degeneration...

Chapter 20 The after party

Dave is home from the hospital.  He was released on Friday afternoon.  The drains were removed Friday morning.  He's sporting a new hairstyle - a bald head with a little stubble - some railroad tracks made of staples on each side - and his full beard.  He wears it well! 

As usual (sad I would choose that word to use!), we have follow up appointments.  One this week to get his blood taken to check his Dilantin levels, one next week with our primary care physician, and one with the neurosurgeon for a CT scan, get his staples removed, and find out if the bleed has clotted.  No CT scan was done before he left the hospital - so I'm a little nervous.  But I guess everything that could be drained had been drained.  He is to wear a shower cap when showering to keep his wounds dry.  I found one in a lovely polka dot pattern.

As usual (there's that word again!) he could not "take it easy."  Was concerned about the towels not being done on Wednesday - I did them on Thursday!  Did the trash and recycling make it out?  He was checking the water in the Christmas tree, going up and down stairs, picking things up, throwing things away - including my winning ($3.00!) scratch lottery ticket and receipts from Christmas presents that I need.  He did not like being told he needed to be careful.  Saturday evening, he finally  sat for awhile in a chair - he said he could feel something in his brain - not pain - just something pushing, or some pressure - I think it scared him a little - so I'm a little concerned about what might be going on.  I tend to wish the follow up appointments would be sooner - at the same time, I don't want to hear any bad news.  It was mentioned that his bleed may not clot and he may need to have the fluid drained periodically.  I don't think I even want to know what that entails unless I need to know.  Apparently, with brain shrinkage - which he definitely has - the veins and vessels in the brain kind of stretch and can thin because they are stretching across open spaces and are more likely to tear.  He kept falling asleep in a chair on Sunday - his handheld game of Solitaire that he plays each and every day until he wins kept slipping out of his hands and falling to the floor.

It's now been almost a week since he got out.  Things seem to be going well.  Next Wednesday I'm hoping he gets a clean bill of health for now.

I've been doing some more research on FTD, particularly the behavior variant type.  I'm now anxious for our regular follow up with our neurologist that diagnosed this disease.  I can't believe we're coming up on six months.  I notified her office of these two hospitalizations so she can review the record before our visit.  These incidents seem significant enough that I'm wondering how they will impact his main diagnosis of frontotemporal degeneration.  Which brings to mind another issue on his discharge papers from the hospital - his first set of discharge papers indicated FTD as a diagnosis along with the other issues from the fall.  His second set of discharge papers DID NOT include it.  In my mind, it is a significant enough medical issue that it should always be noted at the time of discharge so it can be considered in the overall discharge instructions and follow up care!  If it was me being discharged a second hospitalization, one could make the assumption that I understand what I need to do to take care of myself.  If that diagnosis is not noted for all members of a hospital care team to see, how can appropriate discharge planning take place for an individual with significant cognitive problems?  It is a challenging state of affairs.  This is probably repeating myself, but having been home with Dave for a good part of the last month and a half, I have noticed the depth of his deficits.  I've seen more irritability - but that is probably in part due to two hospitalizations.  There are little things - individually not much - but together - I don't know.  Is it progression of the disease?  Is it because his brain has been through the ringer the past month?  Literally squished and pushed off center by a build up of blood and fluid?  I don't know.  We need the clean report on his CT and get past all this, and see what life is like a couple of months from now, all the while trying to make the best of today because he's the best he'll be right now. 

I saw a great half an hour special called It Is What It Is - about FTD - interviews with four families and their struggles.  There were so many moments in that short documentary that I could identify with - it was heart wrenching, but again, so comforting to know there are others out there going through this same thing, sharing this same experience.  It is available on You Tube.  I'm going to try to attach it to this blog for those who wish to watch it.

Along with all this, my dad is still hanging in there.  I am blessed to have been able to spend afternoons with him, helping take "care" of him.  It has been good.  While I don't know how long he has - it's been quality time and I wouldn't trade it for anything. 

More later.