slowe

Stroke Caregiver - male
 View Profile  See their activity

  • Posts

    63

  • Joined

  • Last visited

 Content Type 

Blog Entries posted by slowe

  1. slowe

    Missing In Action

    By slowe,

    Sorry I've been missing-in-action lately.
     
    The daily saga with DH's health continues.
     
    After two incredibly bad weekends (with him not feeling up-to-par and his fsubsequent foul moods) peaked on Tuesday, when his blood pressure dropped to 80/60. (Normally with a bag full of meds, his BP runs 140/80).
     
    It was an inconvenient as could be, with me being the only one in the office and it being the final day of the month, with billing to be done after 5pm.
     
    But there we were, on the line with the VA for nearly an hour trying to talk to a nurse and then trying to get an appointmen (after an hour on the phone I was told he should be seen in the ER).
     
    So off to the VA we went. Admitted to the ER where, after an IV, an EKG, and another ultrasound on the carotid arteries, they came up with...........nothing!
     
    The good news is they couldn't find a reason for the drop in BP.
     
    The bad news is they couldn't find a reason for the drop in BP.
     
    And so goes the story of life after a stroke.
  2. slowe

    Happy Anniversary to Us!

    By slowe,

    Today is our 39th wedding anniversary.
     
    After Rolly's stroke, I kind of "gave up" on him remembering things like that. So this year I decided not to get him a card or even mention what day it was.
     
    Imagine my surprise when I got up this morning and there was a card sitting on the bathroom sink!
     
    He said he was in a store the other day and happened to walk down the card aisle, and something in his "post stroke" brain remembered our anniversary. He did have to ask someone what the date was however.
     
    Things like this remind me that it truly is the "little things" in life that make a difference.
  3. slowe
    As I last posted, Rolly is now 2 years past stroke (actually 2 years and nearly 3 months!)
     
    Is this as good as it gets?
     
    I'm thinking so.
     
    Short term memory is shot to hell.
     
    Patience level is extremely lowered.
     
    Get's confused and overstimulated.
     
    How do I put this one...........virtually no interest in sex.
     
    Every day we start over, apologize for yesterday's mistakes, and vow to make this a "good day". But most days it still seems like I'm giving 99.9% and he's giving .01%.
     
    I think I'm still in "denial" sometimes.
     
    He is a different person.
     
    He has changed.
     
    He does have diminished capacities.
     
    Darn it, this isn't how life was supposed to turn out!
     
     
  4. slowe

    New Year's Eve

    By slowe,

    I'm going on the record.
     
    I HATE New Year's Eve. I don't see it as looking back on a great year, I've always felt it was more of looking back on a year with regret.
     
    And life is too short for regrets, as I've surely found out the last 1 1/2 since Rolly's stroke.
     
    So to all of you, I wish you all a New Year filled with hope.
     
     
  5. slowe

    Frustrating Day with the VA

    By slowe,

    Don't get me started on the VA.
     
    He's gone in about every 4 weeks all summer for a CK blood test, as the level just kept going up and up each time. (a high CK level can be a precursor heart attack -- wonderful!) About 5 weeks ago the new DR took him off his lovastatin (for cholesterol) and the test on the 8th is finally near normal
     
    But here's how the conversation went down yesterday
     
    The DR was supposed to "get back to me" with the results. of course that never happened. So i place a call to the DR. You can never get through of course, you call and leave a message and hope somebody with a brain gets it through the system. I didn't hear back and I didn't hear back, so I placed another call. A nurse calls me back yesterday and asks for him. I explain I'm the wife, he's had a stroke, he's at home can you talk to me. Of course they can't. So I call him and he calls her and then she (finally) calls me back to say the blood test is near normal and he can "continue the medication". I ask if this means keep "not" taking the one she took him off of, or to start taking it again. Seemed like a logical question to me. She says (can you believe this) "I don't have any idea. Let me read to you exactly what it says --and she repeats herself almost verbatim! SO again, I ask, does that mean take the statin or don't take it? She says the prescription is still good. I explain I have two bottles of the *beep* at home, and that's not my question. Does he take it or not? She says she is "just" filling in for somebody and has no idea. God, I hate it when people use that excuse---isn't anybody responsible for anything anymore? I ask her if she could possibly find out from the DR. She agrees to do that.
     
    Then I ask if the DR still wants to see him in Oct. She says "well, you have an appt on the 17th with DR M---(some name I've never heard of). I say really? News to me. I ask what happened to Dr. Patel (the second DR he's had here, but we had never seen yet). They reassigned DRs and now we have a "him" dr instead of a "her". I explain that he has historically done better with female DRs. No, you can't change now. Keep this appt and if it doesn't go well, then you can request a change.
     
    The last thing on my agenda is to see how to get access to his records, drs calls, etc. I had been told we need an advance directive. I ask if this will let me talk directly to the drs without him giving his ok each time. She says no, it's only "if mr. lowe is no longer able to speak for himself." So I try to rephrase the question and she starts her spiel again. I break in with (by this time thoroughly fed up with the system) "I get it, I get it, I can pull the plug on him. What I'm asking is how to get access to his medical providers directly." Of course she has no idea and refers me to social services. This lady actually has a brain and is nice. Bottom line is each DR interprets the order differently, and it's up to them to "choose" to talk to me or not.
     
    UGH!
  6. slowe

    Red Hat Saturday

    By slowe,

    Red Hat Saturday
     
     
    My Red Hat friend, Jan, & I had a delightful day Saturday! It was a full 12 hours from the time she picked me up in EG till she dropped me back off. Amtrak was rather slow we thought, but that gave us more time for chatting on the way in (and sleeping on the way back!)
     
    The Ferry Building and outdoor farmer's market were wonderful! We both came back with our tote bags overflowing. http://www.ferrybuildingmarketplace.com/
     
    It was hard to choose a place to eat, but we finally settled on Ferry Plaza Seafood. Good choice, Jan! She let me pick the wine, and I paired a nice pinot grigio with our seafood. http://www.ferryplazaseafood.com/
     
    We couldn't get enough of the fresh produce (although it was definitely higher priced than the farmer's markets here!) $3 a pound for dry farmed tomatoes, but they were worth every penny! Lots of the vendors gave out samples, and the peaches were a sure bet after we tasted them---summer in every bite! Let's see, Jan came home with some nice looking potatoes and a loaf of asiago cheese bread that kept calling her name all day! I think she ended up with some really fresh looking green beans as well. I brought home some fingerling potatoes and a loaf of green onion bread and a loaf of sourdough we'll use today for "buns" for hamburgers. We bought a couple of desserts, Jan a brownie, and me a raspberry macaroon that we munched on while walking about and people watching. Lots of olive oil and vinegar tasting to be had as well.
     
    My first "real" train ride, and I must say trying to figure out the timetable was an experience in itself! I was amazed how clean and well maintained both train stations were (I guess I was thinking more along the line of Greyhound bus terminals! (~_~)
     
    Rolly had dinner ready for me when I got home, and that was a nice touch to end a wonderfully casual, stressfree day!
  8. slowe

    Minute by Minute

    By slowe,

    Got my first stroke support newsletter in the mail yesterday. It came at a good time! Rolly had had an "off" day and was a bit grouchy, and it reminded me that it's not only day by day, but sometimes minute by minute!
     
    We're in the middle of a heat wave, expected to be between 105 and 110 today. Off to work 1/2 day, then home and in the pool!
  9. slowe
    I finally decided I had to do SOMETHING, so attended a stroke survivor group meeting held at Kaiser. After a brief time together, they split into two groups, surviviors, and caregivers (that's me!). They of course wanted to hear my story (I kinda felt like I was at an AA meeting, you know..."Hi, my name is Susan. (~_~)
     
    It was amazing to see them all start to nob and smile as I related me story....been there, done that, all of them! It was encouraging to know that!
     
    I came away with a new sense of what the stroke had really done to Rolly, and a few coping strategies. Hopefully it makes a difference in our relationship, and the general atmosphere around the house!
  10. slowe
    Sometimes it seems like the shock and scare of Rolly's stroke was just yesterday, but some days (like lately) it seems like this is the life we have always lived.
     
    A life where marriage is no longer 50/50 (if it ever was?), but 90/10, weighted heavily on my part.
     
    A life where I often feel like I'm walking on eggshells just to not "push his buttons" and set him off.
     
    A life where "For richer or for poorer, in sickness and in health" has new meaning daily.
     
     
  11. slowe

    Good Day For A Fire!

    By slowe,

    Cold and windy and rainy here in Northern California today. Good day for a fire, which we have roaring in the fireplace as I speak.
     
    Rolly is making chicken fried steak, mashed potatoes, and roasted asparagus and proscuitto for dinner.
     
    He's been really tired and out of it this week, fighting a head cold. Times like this it's really obvious what the stroke took out of him.
  12. slowe

    We're still here!

    By slowe,

    I can't believe how long it's been since we posted.
     
    Nothing wrong, just "life" taking up our time!
     
    As I've come to expect, Rolly has good days and bad days, and after a year I think I finally realize how "optimistic" I was when the first few days and weeks I told everyone how lucky we were that it was a "minor" stroke. I truly didn't realize the ramifications it would have on our life, since he didn't have what I considered the "typical" stroke aftermath---paralysis, speech problems, etc.
     
    But now, after more than a year of living with the stroke and it's seeminly permanent effect on our life, I see the limitations he has, the fatigue that is still with him constantly, and the irritability and shortness that often pops up. But does it beat the alternative? Heck yeah!
     
    And life goes on.....
     
     
  13. slowe
    Hard to believe that just one short year ago, Rolly and I had blissfully gone to sleep, after trying out a new Mexican restaurant, and little did we know that we would be awakened in a few hours with what we would later find out was his stroke.
     
    Life goes on, and things are so much different than a year ago. We have given up much, but are thankful he is still here, and keep on trying every day!
  14. slowe

    It's a Good Thing

    By slowe,

    Rolly and I are again making a concerted effort every single day to avoid the confrontations and silly arguing that has arisen since his stroke.
     
    That, plus me working out 20 minutes a day on the elliptical trainer (like a nordic track, I think!) and cutting out junk food for the last two weeks and found me in a much better mood, feeling better about life in general, and 4 pounds lighter!
     
    It's a good thing!
  15. slowe

    Baby Steps

    By slowe,

    We had lunch at new restaurant yesterday.
     
    I liked it more than Rolly. Quaint little old house with one room being a small wine bar, and two rooms turned into dining rooms. Let's see, he didn't like the tap water, the french onion soup was too salty, they should have used bigger shrimp in the shrimp croissant, the kenneback fries were soggy. He did like the mixed spring green sald with champagne vinagerette though! We shared---he had most of the salad and half the croissant, I had most of the soup and the other croissant, and shared the fries.
     
    I didn't think it was awesome or anything, but it wasn't as bad as he seemed to think.
     
    Which leads me to the point of this blog. He seems to be much more negative since the stroke, and yesterday seemed to be a particularly bad day. He's been battling a stomach big this week, and that's what I chalked it up to--since the stroke it seems that everything "throws him for a loop" more quickly and easily than before.
     
    One day at a time, one baby step at a time!
     
  16. slowe

    Ruffled Feathers

    By slowe,

    Seems like every day it's something.
     
    Rolly has been in good spirits the last week. His biggest issue is with the girls (granddaughtersw we live with). They are 6 and 10. The (seemingly) constant noise and confusion bothers him. I try to play the mediator. I understand his issues with "sensory overload" since the stroke. But I also know this is THEIR house we live in, and it seems like I'm always the one trying to smooth out ruffled feathers, explain what the other person meant. etc.
     
    And as I reminded him yesterday, this is the life we chose (after the stroke chose us! (~_~) and we need to find a way to make it work, at least for the next couple of years. It'll be 3 years until he gets social security, and realistically, we can't do anything about living arrangements until then!
     
    And life goes on............................
     
  18. slowe

    Open Letter to Rolly

    By slowe,

    Another morning of bickering.
     
    When does it stop? You tell me it's "all" my fault, that "I" am the one who causes all our problems. I think you forget how hard this is on me. How hard it is to lose part of you. How hard to be the one to take charge of every single aspect of our lives, to make all the hard decisions. To lose part of my best friend, my helpmate, my lover.
     
    I know it's hard on you. That's a given. But please remember we've BOTH had to deal with the future not being what we expected.
     
    You know I love you.
     
    Please remember that.
  19. slowe

    We're Back

    By slowe,

    Rolly had a good trip. I think we appreciate each other more when we have a little break from each other! I am making plans to go to my niece's wedding in May, and then spend a few days in TX with our daughter and family.
     
    Thanks, Sue, for asking where we were! Just busy with "life" you know. But I should never be too busy to chat with friends!
     
     
  20. slowe

    Rolly's Trip

    By slowe,

    Rolly has been gone for 10 days, coming home tomorrow. He's spent some time with our oldest son and family, and several days with his older brother in Oregon. His brother has had a couple of open heart procedures, a failed pig valve transplant and an artificial valve that seems to be doing the trick. His brother just turned 65, and suddently "old" and "health issues" seem not as far away as they did before Rolly's stroke. He tried to hook up with his twin brother as well, but as usual, his brother couldn't make the effort to drive 15 miles to see him. His loss!
     
    I think it was good for him to go. He was a bit apprehensive about being out of his "comfort zone" and being totally responsible fore his meds, but he seems to have done just fine! In fact, we've only talked a handful of times.
     
    Hopefully the "rest" was good for both of us.
  21. slowe
    Wow, I thought it would be easy to come up with 100 things! So this is a "work in progress".
     
     
    1. Take an Alaskan cruise
    2. See the leaves change color in New England
    3. Swim with a dolphin.
    4. Go to an authentic New England Clambake
    5. Skinny Dip
    6. Eat in New Orleans French Quarter
    7. Learn to Waltz
    8. Make love in the Redwood forests of California
    9. Picnic in Tuscany.
    10. Sleep in a house on a cliff above the Pacific Ocean, with giant windows to enjoy the view
    11. See a Broadway show in NYC
    12. Send a message in a bottle.
    13. Camp in Yosemite
    14. Sit on a jury.
    15. Write an article/short story, etc and have it published
    16. See "Old Faithful" spout
    17. Shower in a waterfall.
    18. Volunteer and teach someone illiterate to read
    19. Spend New Year's in an exotic location.
    20. Get passionate about a cause and spend time helping it, instead of just thinking about it.
    21. Sing karaoke and not worry that I can't carry a tune!
    22. Drive across America from coast to coast.
    23. Write my will.
    24. Sleep under the stars on the beach
    25. Spend a whole day in bed ----- reading!
    26. Drive the Autobahn and not be scared
    27. Spend Christmas in Hawaii
    28. Take a cooking class
    29. Raft through the Grand Canyon.
    30. Donate money and put my name on something like a brick in a neighborhood park
    31. Visit the Statue of Liberty
    32. See Stonehenge
    33. Be debt free
    34. Go to the top of the Space Needle
    35. Go to the top of the Empire State Building
    36. Ride in a horse-drawn carriage
    37. Hike at least part of the Appalachian Trail
    38. See a tornado.
    39. See tigers in the wild.
    40. Fly first class
    41. Backpack in Europe
    42. Set foot in all 50 states
    43. Tour the White House
    44. Get a tattoo
    45. Tour the USS Arizona memorial at Pearl Harbor
    46. Take a ride in a sailboat
    47. Ride a gondola in Venice (second best, in Las Vegas)
    48. View the real Mona Lisa at the Louvre in Paris
    49. See the Aurora Borealis (Northern Lights)
    50. Take a ride on a steamboat
    51. Attend a mystery dinner party
  22. slowe

    I Am From

    By slowe,

    From a writing assignment. JRiva should do this for sure! Anyone who wants the format should PM me and I'll send it on to you!
     
     
    I am from powdered milk poured back into empty milk containers, from Tide and Joy and root beer floats on New Year
  24. slowe

    For This I am Thankful

    By slowe,

    I still have a husband. Not the same husband I had before the stroke, and certainly not the husband I wish I could have back, but he's still here, relatively healthy, and
     
    FOR THIS I AM THANKFUL!
  25. slowe
    It's been a long two years. Rolly and I are both currently on antidepressants. But we're hanging in there, and some days that's all you can ask.
     
    Here's something I wrote for a friend's emag. Tomorrow is Rolly's 2 yr "stroke-a-versary."
     
     
     
    On April 1, 2005 my husband, who had just turned 58, had a stroke.
     
    On our last "normal" day together we went to dinner at a new restaurant, watched a little television, and went to bed.
     
    My husband tells me (I slept through this part) that he woke up about 11pm because he smelled something burning. He looked outside but didn't see anything, and went back to bed.
     
    About 2am he woke me up, saying something was wrong. He was dizzy, couldn't walk without stumbling, and had what he described at the worst headache in his life. We sat up in the living room for a couple of hours, seeing if he would get better (He'd had one previous episode where his blood pressure spiked and I took him to the ER. At least that's what they said it was. Symptoms were similar, but not as severe. I think he may have suffered a first stroke back then).
     
    We went back to bed for an hour or two, and when we woke up he was no better, so I took him to the VA clinic when they opened at 7:30am. They immediately assessed him and sent him to the local imaging clinic for an MRI. The technician there was not very supportive when my husband started to freak out. I asked if they could sedate him so they could proceed, but they told me no. We went home, stopping to tell the doctor what had happened. He said he would have ordered sedation if the tech had called. I tried, what more could I do? So they said take him home and if he got worse over the weekend, take him to the ER. Monday afternoon he had an open MRI. He was still scared, but they let me sit on a chair and hold his hand through the procedure. It was after the VA clinic had closed by now, and so we went directly home. About 5:30pm the doctor called me and says he'd had a stroke. I remember my response "Oh, really?". He told us to be back at the clinic first thing in the morning.
     
    He had some trouble walking the first couple of days, but no paralysis, no loss of speech or body functions. And as I told my girl friends, he didn't drool! (~_~) Sometimes if you don't find the humor in the situation, it becomes way too overwhelming and depressing.
     
    He tried to drive that first weekend, before we knew it was a stroke. After he ended up on the wrong side of the road, going the wrong way, he pulled over and I drove (if you knew me, you'd find that amazing--I avoid driving whenever possible). But stroke changes you, not just the person who suffered it, but the caregiver, too.
     
    It does get easier, but every day is a struggle.
     
    Now I know that he had four of the five warning signs of a stroke. We waited five and-a-half hours before seeking medical treatment. The doctor told me if it ever happened again, he needed to be taken to a hospital within the hour, to prevent more extensive permanent. damage.
     
    Knowledge is power. Be prepared! The following information comes from the National Stroke Association website (www.strokeassociation.org)
     
    Stroke is a medical emergency.
    Know these warning signs of stroke and teach them to others.
    Every second counts:
    Sudden numbness or weakness of the face, arm or leg, especially on one side of the body
    Sudden confusion, trouble speaking or understanding
    Sudden trouble seeing in one or both eyes
    Sudden trouble walking, dizziness, loss of balance or coordination
    Sudden, severe headache with no known cause
     
    Call 9-1-1 immediately if you experience symptoms!
     
    Time lost is brain lost!