Mike Day 81 Moving Forward: Out Of The Fog

August 15, 2011

Family, Health

It’s  been a very long time since I last posted.  I seemed to have lost my voice.  My mind.   My spirit.  It was everything I could do to pick my head up off the pillow in the morning…especially since it had probably been picked up off the pillow no less than 8 times during the previous night IF it had touched the pillow at all!  Nights were a problem.  Happily they are getting better and are almost perfect.  But it’s been a bear of a two months!  To say I was depressed would be hard for me to admit to…as a rule, I don’t DO depression and my spirit is pretty indomitable.  I will say I was sleep deprived which led to hideous sadness, a feeling of being totally overwhelmed, of drowning.  A feeling of hopelessness totally foreign to me since I am of the belief there is nothing a human being cannot do or learn to do if they want to do it badly enough and no problem that they cannot solve.  At my wits end one day, I found myself wondering if a lifetime’s belief system was really full of crap…and I had to admit that this illness had beaten me.  And then we turned a corner.  One that we are still turning.  So I’ll bring you up to speed.  Grab a cup of tea or coffee or a glass of lemonade.  It’s probably a read of epic length!

Let me begin this way.  My sister in law told me, the day or so after Mike got sick, that when something like this happens you get to see the mettle of people.  I never doubted my mettle.  Or Mike’s.  Or hers.  Somehow, though, I expected mettle in my children, passed on genetically and environmentally from both Mike and me that I was sadly disappointed not to find in some when push came to shove.  Yes, they were right there in the beginning during the emergent situation.  But in the long haul, the dreary day to day tedium of trying to get a brain injured parent/spouse back to whatever recovery is possible, in that long haul, they showed that they are quite spoiled, really, and very, very self absorbed.  These are not children, mind you.  My children are aged 25, 30 and 37.  I have nobody to blame but myself, as it was I who spoiled them unmercifully.  My brother’s observation?  Their problem is they’ve never had to grow up.  So now, when grown up is necessary, they don’t have the resources to draw upon.  I know I am being harsh.  They have their own lives.  However, when I asked for a specific piece of assistance that was not so very big a deal for them to provide, they showed some less than attractive qualities and did not feel any compelling reason to accommodate my request.  So essentially, at home, I’ve been quite on my own.  It’s been challenging to be sure.  My grandson, 19 and going into the Marines in January, has showed me true mettle and has been there for me when his elders have not.  This kid is one with true character and embodies what the Marines are looking for…honor.  There were many times I simply thought I was crazy or would soon go crazy. He was my saving grace in those times.  Fortunately, this, too, has passed.  

Let me also say this.  As a rule, I would never consider speaking to a professional to get help in dealing with my feelings, my emotions, my sadness.  It’s just something for me to manage and get a grip on and get over.  And so for me, that works.  I could no more think of speaking to someone about my troubles than fly to the moon.  However.  If you are a person who ever experiences a catastrophic event such as this in your immediate family, I heartily recommend that you not try to deal with this on your own.  You go talk to somebody.  This is huge.  It’ll eat you up if you let it.  I am very, very strong.  It came close to eating me up.  Please, please, don’t let it eat you up if you find yourself in this situation.  Run, don’t walk, to get help dealing with.  A smart friend who I confided some of this to told me I wasn’t crazy,   I was just trying to process and accept that this might be as good as it gets.  Unfortunately I couldn’t process that or acknowledge it.  For me, there is no” as good as it gets”.  There is always better…so in many ways my craziness was self inflicted.  Really, talk to somebody so you can keep things in perspective.  I had totally lost mine for a period.

So now to Mike.  A few weeks ago Mike stopped having crazy episodes at night for the most part.  There are a few where he is up, walking around, looking for his belongs and wanting to account for them.  Therefore, the physical aggression has been self limiting.  The times that my son was required to put an end to the nonsense and get Mike back to bed were few and have now dwindled.  He will still get up at midnight once in a while and wander to put his things together to go home…but I am able to reason with him about where we are, who owns this house…well aren’t we home then?  Get back to bed and stop this nonsense…and he does.  It hardly happens at all.  He DOES still wake up some nights.  He has some real trouble sleeping.  But I’ve told him to wake me (he says he doesn’t like to interrupt me LOL) and now he has been.  The other night, for example, I found him kissing the back of my arm.   I asked him what was up and he said simply, I’m awake.  He told me he had been thinking about his future and what he’d like to do and change.  I was impressed.  We talked a bit about it until he got sleepy (BORED!) and went to sleep. 

For a period of time he expressed depression.  He felt his life was broken.  The blood pressure medicine was messing around with his uhhhh, personal life.  I came to find out that the one blood pressure medicine can be responsible for tiredness (he was during the day) sleeplessness (he was every night), confusion and hallucinations among other things.  Since I had essentially eliminated the night time dose myself due to his very low blood pressure and slow heart rate, all that we needed to do was get the cardiologist to lower the day time dosage of beta blocker or change to another to try to get things under control AND give him a blood pressure that wasn’t in the cellar yet keep it in check.  With a cardiologist appointment coming up, I armed myself with statistics, data, and questions/arguments.  I also made an appointment with the neuro-psychologist so he can talk about his feelings with him.  I am sure, with such life altering changes and faced with his very real and near mortality, Mike is feeling loss.  I don’t want it to get hold of him and become a chronic problem.  Mike, unlike me, will benefit from some outside counsel and a professional sounding board.  Hopefully he has progressed enough in his recovery to be able to communicate with the guy and benefit from the visits. 

Speech Therapy continues, and truly his communication skills are returning.  He now, many times, recognizes that he is using the wrong word.  You can see it.  He uses the wrong word, shakes his head no, searches for the right word and many times retrieves it.  Naming objects has been hard and though we repeat them over and over, he is making progress.  Keys.  He can’t EVER find the word KEY.  We’ve been harping on it for a few weeks.  Last night he grabbed my daughter Lara’s.  I asked him what those things were.  He responded KEYS.  I wanted to do backflips!! Unfortunately his voice has not returned.  He can use it with some volume, and a great deal of difficulty.  He also has some trouble swallowing some times.  An unproductive and useless cough and trying to clear his throat persists.  A speech therapist who generally specializes in voice did his session the other day.  She suggested another scope by an ENT to check to see if there is a vocal cord problem.  I suspected one all along…but we’ve been taking a watch/see approach.  I suspect there is vocal cord paresis.  I’m calling today to get an appointment with the ENT.  Hopefully it will resolve itself with some therapy and surgery won’t be needed….and that his voice IS recoverable.  Somehow hollering at the dogs to come in a whisper is just not working or fulfilling…!  LOL 

Occupational Therapy has discharged him, but we’ve added an OT Assistive Technology session once a week.  He works in a computer lab.  So far he’s been turned on to Book Share…which I knew about since I used it for Cameron until I could teach him to read in spite of his dyslexia.  I hope to get him into the share today to look for newspapers and magazines.  He’s not as big on books.  Yesterday I bought the Sunday paper.  I guess I am forced to subscribe again.  If nothing else, he loves to read it and I can have him tell me the day and the date from the upper right corner.  Hopefully it will help him to orient to day/date since even the calendar doesn’t seem to be doing the trick.  I’ll be interested to see what else they come up with for him to help to open up his world.

Short term memory is returning.  Glimmers here and there, but returning.  The other night he got out of bed to go to the bathroom.  couldn’t make it in time because he had to take off his CPAP mask and had an accident bedside.  The side of the mattress and the floor got wet.  I woke up, he wasn’t in bed.  I called to him.  No answer.  I asked if he was in the bathroom.  All the lights were off, it was pitch black.  I finally heard him whisper noooo.  He was on the stairs.  Get on down here, I directed.  When he came it occurred to me something looked odd.  I could see his entire behind though he had boxers on.  Then it dawned on me.  They were different boxers!  And he had them on backwards and with both legs in one leg of  to boot!!  I asked if those were the same boxers he wore to bed and he said no.  I asked if he had an accident?  He said yes.  In bed or the bathroom I asked?  Bed he replied.  I’ll check.  No honey, the bed is dry.  He responded that no, it was wet alright.  I got up to look and found the wet.  I asked why he was going upstairs…and he said he was going to see if those guys were awake up there (my son and grandson) but they weren’t.  So now what is the significance of this story?  In the dark, with no glasses on, he remembered where to find the boxers.  He remembered he had the accident and that it was in bed.  This kind of memory has been unprecedented in terms of short term recall since his arrest.  I was celebrating! 

His long term memory is also coming around.   He now recalls things from our past.  Dates/timeframes still elude him, but he says he is out of the fog and his brain is no longer spinning around.  The other night in bed he asked me if his family knows about us and what we are doing and where we are.  I asked who in his family he was talking about. He responded, my parents.  Well, his parents have been dead since 1995 and 1998.  He thinks they are still alive…even though at times he can tell me they are dead and has visited their grave.  Since he is SO aware these days about life and day to day activities that he even looks different, and the still alive memory is so vivid I think I can only make sense of this apparent confusion one way.  While his head was spinning various bits of information and memories were swirling about inside his mind, disconnected and only marginally accessible.  Now that his head is not spinning, the information is still there…it is slotted in a file someplace.  His brain is now going about the business of trying to reconnect to it.  This is how my feeble little brain makes sense of this neurologic rewiring process.  So there is a memory calendar in his brain I think.  And his brain is going through the pages.  It’s a cumulative calendar.  So as he processes these various calendar phases/pages, and moves forward he is literally in a different time and place temporarily.  The next day I gave him his mom’s obituary memory card to read.  He read it several times.  He persisted in telling us it was her mother.  We read it to him.  He insisted his dad was alive.  We pointed out the statement that Anna was the wife of the late Michael Sr.  He looked pensive.  Sad.  He got very quiet.  I mentioned that I knew it was hard…realizing it was like saying good bye for the first time all over again.  He nodded.  We are working through these memories.  But in my heart, I know my husband is on his way back.  His speech therapist, too, has noticed that his cognition is returning.  We are truly blessed and so grateful for the gifts we’ve been given. 

Mike’s intellect is intact.  He remembers all the science stuff he knew.  It comes back at weird times, but it’s there.  He could tell my grandson the difference between raw and white refined sugar.  He has been discussing politics.  We’ve talked intelligently about making investments in household infrastructure changes. In preparation for the cardiology appointment, I asked Mike if he had questions for the doc.  He had a few.  He told me what they were, I gave him my answers, and typed them up so he could read them when he asked the doc.  They were perfectly reasonable and intelligent questions, pertinent to a visit with the cardiologist.  Life is settling back to normal.  I continue to believe pretty near 100% of my husband will be coming back to us. 

Mike’s bedsore is almost entirely healed.  Thursday of this week it will be three weeks from his last appointment…they stretched it an extra week.  They felt sure it would be closed and I would not need to bring him this week but certainly could if I had any doubts.  Well, I will keep that appointment.  The wound is pretty much sealed shut. There is a scab in there. Last visit it was 1/4 inch long, 1/8 inch wide and 1/8 inch deep.  This is down from 45 mm long, 25 mm across and 25 mm deep when we first started treating it in the end of May on discharge.  It had been worse in the rehab!   Mike is complaining it is uncomfortable to sit, there’s a lump, and I suspect it is the scab he feels.  I don’t want to take any chances.  I will have it checked to be sure.  But relief of reliefs, it is healed…and I can stop doing wound care dressings and wound packing this week.  YEEHAH!  

I’ve been researching Hyperbaric Oxygenation Therapy.  There’s tons of research out there on its benefits for vast numbers of ailments.  Somewhere between 10 and 20 are recognized by Medicare as efficacious, therefore, covered by insurance plans.  Its use in treating brain injury is not one that is covered in spite of the research and results.  However, I’m a believer that it could conceivably help…and definitely can do no harm.     I’ve located a clinic in Columbia, PA where the cost is not prohibitive…though ultimately it would be about $5k….and is in driving distance.  Ugly driving distance, but driveable all the same.  It’s about 2.5 hours away and the first 20 treatments would be daily for 90 minutes five days a week, then 10 more treatments every other day during the business week.  I really want to put together the money for this so that come Spring when the driving wouldn’t be hideous, we can try it out to see if there is benefit.  I want to leave no stone unturned in providing the most benefit to his full recovery.  Mike’s cardiologist, a pretty cautious guy, thinks it might just help him.  Some local hospitals DO have chambers where they use it for wound care, which is covered by insurance, but their treatments are $3300 per 60 minute treatment. Hello.  Affordable?  Maybe for the hockey stars and football stars in Philly but not for us!  I’ll just drive to Columbia thank you very much.  Mike meets all the physical requirements.  Now we just need to meet the financial goals.  SIGH.  Money.  The root of all evil for sure.

The cardiologist visit was late last week.  I am ecstatic!  First up was an echocardiogram.  One had been done in the hospital after his heart attack..and demonstrated slight, very slight, damage from the attack to his ventricle.  The tech told me she had seen far, far worse echos than Mike’s on Thursday and was pretty impressed with it and his heart rate.  Next came the doc himself.  Pleased with the blood pressure.  Open to our questions (of which I had numerous).  Pleased with the blood studies.  Though he didn’t say it, impressed with his cognitive recovery.  He DID eliminate the evening beta blocker entirely, reduced the morning dose to half, says if some of the complaints persist in 3 months but the BP holds steady, he will reduce the Norvasc to 5 mg and consider switching to a different beta blocker.  I could stop taking vital signs twice daily…and could stop taking them even daily.  Once in a while to spot check was sufficient.  YAY!  The best possible news was yet to come.  The results of the echo.  Formerly Mike’s ejection fraction had been weak due to the A-fib.  This was improved to a reasonable number.  Thursday’s echo showed it to be completely normal.  Completely.  It also showed that the slight damage done by the heart attack and demonstrable on the earlier echo is showing signs of healing…his heart is improving.  From a cardiac perspective he is in great shape.  We only need to worry about bypass surgery if he experiences angina and demonstrates another blockage…but we do not need to be worried that we would necessarily need refinement of the stented left main.  WEE HAH!!!  I feel like a death sentence that was hanging low over our heads has been lifted…and with it my spirits and the fog I’ve been in.   Interestingly, it benefitted Mike tremendously as well.  I saw a distinct change in the level of anxiety and a sharp increase in his overall sense of self.  He seems more with it.  Less like a patient.  Well, in addition to finding out how good his overall health really is, all things that resembled medical stuff (wound care, vital signs etc) are done.  Done.  It’s gotta feel good not to have to be treated like a patient by your wife, and for my money, just not having to have your wife put dressings on your butt would be enough to lift my spirits if I were he!! 

So here we are looking to the future…good health, recovery well under way.  We need to solve the communication and memory problems.  From where I sit, given what Mike has already accomplished and the blessings we’ve received, I know we will continue to be blessed and can solve anything.  I think future updates will be filled with progress rather than setbacks.  I am falling in love with this new person I am married to…he is unalterably changed as a result of the cardiac and neuro incident…and I am a stranger to him as well.  We are both falling in love all over again.  We have hopes and dreams and aspirations for the future.  The grace of God has given us that.  I am so grateful.

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2 Comments on “Mike Day 81 Moving Forward: Out Of The Fog”

  1. Beckie Says:

    So glad to see your update. Goodness, you have had a rough time lately. Know exactly where you are with the adult kids. Have 2 daughters who seem to only check in when they have a crisis. One is local and more responsible. The other isn’t either.
    Keeping you and Mike in my thoughts and prayers.
    Beckie in Brentwood, TN

    Reply

  2. Beckie Says:

    Thanks, Robin for the sweet comments on my blog. Dad wasn’t perfect, but he was pretty close, in our eyes.
    Beckie

    Reply

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