Strokewife

Stroke Caregiver - female
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About Strokewife

  • Birthday 04/04/1960

Contact Methods

  • Stroke Network Email
    Yes

Shared Information

  • Stroke Anniversary (first stroke)
    06-07-2015
  • Stroke Anniversary (second stroke)
    06-27-2016
  • Interests
    Massage Therapy, Holistic Healing, Natural Remedies, Writing, Art, Music, TV, Outdoors, Family, Laughter...
  • How did you find us?
    Google Search

Registration Information

  • First Name
    Penny
  • State
    TX

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  1. Honestly, I am trying to step aside from the sadness side and focus on things that I can acknowledge about this journey that can perhaps help others. Most recent, I have been focused on monitoring his medication. I am trying to eliminate pills and or dosage levels that may not be necessary. Thankfully, we have a good physician that works along side us. I have notice much more coherence from my stroke survivor since a few adjustments have been made with medication. Having, him gift me with a movie was one of the nicest things he has ever done, even before his strokes/seizures...So, I am grateful. Of course, that simplicity easily gets overshadowed in the next moment when a call to clean up a mess transpire. I take each moment for what it is. Probably, that is why I write so I can keep those memories.
  2. All I want is a room somewhere, Far away from the cold night air… Lots of chocolate for me to eat, Lots of coal makin' lots of heat… Warm face, warm hands, warm feet…Oh, wouldn't it be loverly? Loverly, loverly, loverly, loverly… Her day had been quiet allowing her much time to do a bit of baking and wrap a few gifts during the week of Christmas. She really hadn’t got him anything aside from a lamp that projected the solar system on the ceiling to add to his light collection, his favorite chocolate, and a T-shirt. Of course, she would have no gifts from him unless she bought them for herself. Basically, she didn’t want anything material. Their dog always benefited the most. She would wrap squeaky toys, balls, and chew bones for him to eagerly tear off the wrapping, toss and play while adding his scent to each new gift. It delighted them both to watch him enjoy this moment of spoiling. It was a few days past the Christmas holiday into the New Year. While she had only sparsely decorated in the room he spent most his days it seemed the season came and went with the same vigor. There weren’t many packages adorned with vibrant bows or stockings hanging from the fireplace mantel. In fact, this year was the least of all years in which she adhered to the compulsion of decorating every nook and cranny for the holiday season. Somehow, taking care of him and the importance of it over shadowed anything else. These days she just wanted him to be comfortable. For herself, she desired simplicity. Thus the easy removal of a tree and a wreath that acknowledged the season assisted it to come and go just like that. The film, My Fair Lady is a 1964 American musical comedy-drama film based on George Bernard Shaw's 1913 stage play, Pygmalion. Starring Audrey Hepburn as Eliza Doolittle and Rex Harrison as Henry Higgins the film won eight Academy Awards including best picture. The story focuses on an impoverished flower girl that had bad speaking ability and became the substance of a wager by a phonetics professor claiming that he could teach her proper English. The substance of the play comes to be more about the two falling in love aside their difference more than winning a wager. While, (spoiler alert) Eliza conquers the quest to speak proper the professor suddenly becomes aware she meant more to him than a bet. After tucking her stroke survivor and the dog in for the night she settled herself in the recliner in the front room to watch a movie as she often did in the wee hours of the night. She found it comforting to just lose herself in movies. On any given day she could scroll through the list of recorded movies or shows and find he had duplicates, triple, or even quadruples in the library because he wouldn’t remember he had already recorded the movies. It was an on going thing they discussed because if too many movies were recorded or the box was full they could not record future shows. She realized he had trouble remembering how to get to the list of movies on file thus why he would record over and over. So, on this evening she began the clean up as usual only this time to her shock she noticed a few movies, One being My Fair Lady, that were in the recordings and she had not recorded them. Suddenly, a tune from the move popped in her head. “By George, I think he’s got it! He’s got it! He’s got it! By George, I think he’s got it!” In that moment her heart was full. He could not have given her a better gift if he had paid for such. Reflecting back to when she was a young girl she recalled how her family would focus on giving gifts that didn’t cost anything and how most of those gifts meant more than one’s bought in a store. Clicking play she settled in with hot cocoa, a fuzzy blanket, and a movie that was gifted to her by him. It has been almost five years that she became a caregiver. Over the course of those years the journey has been a hard climb with very few easy steps. Yet, she through out their journey has focused on finding ways to help him live with in the means do-able with his new life. Cognitively, he has not returned to an intellectual place like before his stroke and lives mostly in years gone by that linger in his high school and college days. It was a time she was not a part of and didn’t appear in his memory. Still, she follows a regiment to talk about things they have always done together with hope that he will catch up to today. Depriving her self of much most often to care for him she knows it will never be the same. She also desires for him to talk about their dating years or wedding with her even though she knew it is unlikely. “Just take time for your self and don’t focus on what cannot be,” rang in her head. As Professor Higgin’s sings, “I’ve grown accustom to her face,” bringing the movie to it’s finale she got out of her head an embraced the awareness of simplicity; that simplicity that she wished for silently. At the same time she acknowledged his gift. No words needed to be spoken. Suddenly, she was aware that He had remembered her love for musicals. With that she turned off the TV, went to bed, and drifted off to sleep with the tune… Oh, wouldn't it be loverly?Loverly, loverly, loverly, loverly…sounding in her head.
  3. Strokewife

    Lilacs

    The Syringa Vulgaris plant interestingly is a flowering shrub of the olive family. It is native to the Balkan Peninsula. This decadent ornamental bush is widely grown in many European regions as well as North America. In ancient Greek mythology the story is told that Pan, the god of forests and fields was hopelessly in love with a nymph named Syringa. Legend is she being afraid of his advances disguised herself by turning into the aromatic shrub. He never found her yet he found the bush. Noting the shrub had hollow reed like branches Pan created a pipe from those limbs. The scientific name Syringa Vulgaris is derived from the Greek word “syrinks” which means pipe. This flowering shrub used to make the mythological god’s panpipe is commonly known as Lilac. As she stood and inhaled the night sky illuminated by the spring equinox moon she reminisced of her home. It was the spring season when the lilac bushes permeated the air. Not only are the shrubs beautiful in their hue of white, pink, and purple but their sweet aromatic scent embraces anyone who inhales. It had been many years since she journeyed to her homeland in the central region of Illinois. Both her stroke survivor and she grew up in the prairie land commonly known as the black belt because of rich fertilized soil. Their journey to the state of Texas happened in pursuit of a dream. While the predominant one season of summer was welcome by them with living in Texas it was much different than where they grew up with the four seasons in Illinois. Specifically, the blossoming of lilacs didn’t happen in Texas. So on that night when the brightness of the moon hugged her being to announce the arrival of spring tears rolled down her cheek. More so she imagined the perfumed aroma of lilacs back home while intentionally pondering days of old and longing to travel. More often than not her stroke survivor talks about those days of his youth. He speaks about the time as a teenager when he was a speed skating champion, or his high school years when he was captain of the drum line. He reflects back to the nights he worked as a disc jockey at the local dance club. Those days of winning foosball champions and playing a drinking game called quarters for alcoholic beverages are all among the stories he frequently tells. His college days where he excelled in computer science, receiving honors as top of the class, he reminisces. The days of old are a dominating force in her stroke survivor’s mind where he currently dwells most of his days. Simply, if you ask him about today like what movie did he watch, what the television show is about, or to count to ten he cannot always do that task. Often with the speech therapist when being challenged in word association games he will avoid doing the assignment by telling stories of his younger years. There are days that are on point. Some days she feels like he could just get up, grab his car keys and go to work as if nothing were wrong. That image dissipates quickly and she is reminded of his deficiency while watching him struggle putting a spoon to his mouth when eating. And too, he will repeatedly ask to see his yearbook, play a movie that is decades old and he has seen a hundred times, or tell her a story over and over like it was the first time. She didn’t know how many there are like her husband that are propelled to a different plateau with their stroke where the mind has short circuited because of seizures. The cognitive defect that engulfs her husband’s brain creates confusion so he goes back to that which he remembers very well. She is sure there are fancy medical names for this short-term memory malfunction but she cannot name them. Somehow, with his memory loss her stroke survivor still seems content. So as she breathes in the night air of spring she thinks about those lilacs back home. Maybe her stroke survivor’s short-term memory is like Syringa from the mythological story and has hidden itself within the aromatic bush. Perhaps Pan is long-term memory and the reed pipe he made plays a continual recognizable tune that comforts her stroke survivor. None-the-less, when she spoke to him about missing the scent of lilacs back home he too commented about them but told the story of dreading having to trim back the lilac bushes at his childhood home thus his memory wasn’t as pleasant. However, it was that moment she realized they had a typical conversation. There was no speech deficiency or failure to recall. And while it was a long- term memory for them both it was a moment that reflecting about the lilacs back home addressed her longing to travel. With that she once again pondered days of old. Softly she reached up and wiped the tears of joy from her cheek.
  4. An alarm clock rings in the wee hours of the morning before sunrise has made an appearance. Fred the Baker rolls over and sluggishly stops the loud continual sound. With his eyes forcedly wide open he swings his legs out from under the covers and sluggishly shuffles to the bathroom where he changes into his work attire. Still moving in slow motion out the door he goes only to reappear at a bakery. All during this maneuvering to work Fred repeatedly says, “Time to make the donuts,” up until customers arrive in masses, where he greets them eagerly with a wide variety of those glazed circles and a smiling face. Michael Vale was a classical trained actor in New York City. He had roles in many television shows, Broadway plays, and movies during the 1960 to 1980 decades yet he was best known for his role as Fred the Baker in the infamous 1980’s commercial for Dunkin Donuts. Mr. Vale played that sleep deprived mascot role for over 15 years. When he retired there was a parade in his honor and a declared free donut day. Upon his death in 2005 the company adorned their donut packaging to honor him with the words he made so famous. Some how as a Caregiver for 4 years to my stroke/seizure survivor husband I know that there are many mornings in which I get up the same way as Fred the Baker. Instead of donuts my mantra is more like, “Time to be a care-giver.” Now, I am not a classically trained actor. The role I play 24/7 is only infamous to my stroke survivor. There is no concept of retiring as a Caregiver nor is there a thought of a declared free care-giving day. Certainly, there are means to acquire such help and there are a few friends and family that step in to assist for a few hours here or there but mostly there is not a care-giving parade passing by my way. The journey over the past four years has been a very rocky and mountain like terrain. Each day has brought it’s own challenges. I have become accustom to daily unplanned mishaps. As well, I do not beat myself up if I don’t get everything done on schedule. Basically, care giving is the hardest job I have ever encountered. And secretly, there are mornings I give my husband a donut because it is easier than whipping up a heart healthy meal. My stroke survivor has not bounced back to a level of recovery like many do. The seizure activity or short-circuiting of his brain has created cognitive decline. Which has made it hard for him to do most things in a timely fashion. He is listed as full assist by all recent assessments. In turn, I am the one fully assisting him. I have watched him slowly digress with communication and dialect to a point he stays quiet. He sleeps more than he is physically active. Mostly he no longer wants to get up or go out. Even still, we still greet each day with hope and a semi smiling face. To be clear, I am not trying to advertise for Dunkin Donuts, more so I am merely using the old commercial as an analogy of how I, the caregiver, feel more times than not. When I started the care-giving journey back in 2015 I eagerly jumped in with both feet. I researched, prepared, and acknowledged all that was expected of me. Vowing to be an advocate for caregivers and stroke survivors I ran full speed ahead. Today, my pace has slowed down. Don’t get me wrong, I still advocate for caregivers while researching the latest in studies. Yet I feel not much has changed in the realm of support to caregivers and this makes me question why. Without being too brass it just seem like stroke survivors are treated for an allotted amount of time as deemed appropriate by insurance then simply sent home with no concern to how the caregiver will manage on a day to day basis. Many a conversation I have had with doctors, therapist, and programs as to the deficiency in training and assistance for the caregiver. I am astounded at how most in the field of rehab or brain injury do not have knowledge of resources available. Often, I have found more information of things like support groups available than the people being paid to know. Of course, great help is a separate issue from any financial obligation that accumulates. It seems it always goes the route of services available for the stroke survivor that may have out of pocket expenses. The caregiver has to find means to continue their life while incorporating the role of seeing after a stroke survivor. In my case, I still work but had to cut back greatly to attend to my stroke survivor. Thus, I always feel like I am moving in a zombie state of mind. I guess what I am trying to say in noting Fred the Baker is I find it interesting that a professional actor can go down in history for an advertising catch phrase implying how tiring it is to prepare donuts. Meanwhile there are caregivers all over the world working relentlessly without any kind of notoriety. Somehow, the scale seems heavily unbalanced. In truth, my dear readers, I care give because I love my stroke survivor and know him best but it would not be a job I would apply for outside my home. So as I end my thoughts I humbly stand today applauding to honor each of you whom are Caregivers.
  5. Red Rover, Red Rover Send A Caregiver On Over… The game Red Rover was a game I played during my childhood. Often I, along with the neighborhood kids would get together and play this simple game around the summer holiday time. It did not require equipment. The only objective was to call one individual to run over and attempt to break the barrier formed by the group of young individuals interlocking their hands. If that individual did not break the barrier then that single individual joined the group forming the barrier. Each individual that broke the barrier kept having a turn until only one was left and declared the winner. In our neighborhood we had to sometimes have more than one winner because there were a few boys that always seemed to break the barrier . As children I suppose we played this game simply for fun. There really wasn’t a concentrated purpose to increase our knowledge of team spirit. Perhaps it did that without us realizing it. Likely it wasn’t based solely on improving our individual strength. Regardless of the actual premise for the game of Red Rover the goal seemed more about just having fun. While we played this game for hours I never seemed concerned about time. Those days of my childhood always seemed to be filled with fun. I thoroughly loved my youthful years. Maybe it was simply because my whole neighborhood would gather during these holiday times like Memorial Day and we would eat, play, and embrace the festiveness of the time. We just took time to enjoy being with each other. Certainly, when I was a kid I never thought about the purpose of Red Rover. If my name was called I ran with all my might to break the barrier of the other children. Although I always tried to break the barrier more likely I didn’t and I would then become part of the barrier. I never felt defeated. I just took on the role that was determined upon my turn. Three weeks ago, my husband, a 3 year, 2 strokes survivor was admitted to the hospital due to a grand mal seizure that rendered him unresponsive. He had not experienced this kind of seizure activity before. Well, he did in December but in a much milder fashion and we quickly went to the hospital. At that time they seemed to conclude that he had a viral infection of unknown origin. He saw his Neurologist at the same time and he sent him through a course of test and blood work, which in turn started home therapy. Somehow, my stroke survivor had aphasia begin after his hospital discharge in December. While he improved with home speech therapy I still had discussion with the Neurologist of the possibility of stroke or TIA that didn’t show on Cat Scans. We all seemed to agree that it appeared that he did but there was no solid finding. And, as I said earlier, seizure activity decided to jump on board. Thus today he is in a Skilled Care Rehabilitation Hospital to get back his strength, balance his blood pressure and continue his Physical, Occupational, and Speech Therapy while receiving medical attention. Since it feels much like playing the game of Red Rover I, along with my stroke survivor am running toward the barriers. The difference this time of playing the game is I, along with my husband, seem to be breaking the barriers. Sure all that surrounds care giving for a stroke and seizure survivor is still prominent. I, for a while, am getting a little break from continual care giving since my husband is in a facility. Yet, I do still have to keep up on them at the facility. I have learned there is no place like home. And, no one cares about my stroke survivor as much as I do. This current medical event really adds to my already very aware care giving self of the deficiencies still in the system. Hopefully this is a barrier I will continue to break. So, as I hear the call of “Red Rover, Red Rover Send A CareGiver On Over” I reflect back to those days of my youth when it seemed to just be about fun. My hope is that my stroke survivor excels and pushes past his current disabled boundaries breaking all barriers so that he can be declared the winner. And I through all this will be content with the idea that we are just having fun.
  6. Thank you for sharing your experience. It is comforting to know that there are others silent movie watching. I actually have sensitivity to certain sounds so I will find the TV to loud sometimes. The one thing my husband has learned is if he needs my attention the best way to get it is turn the TV up really loud. Anyway, as I mentioned in Sue's post we are returning to Neurologist next week to update this situation. My husbands favorite movie is "Guardians of the Galaxy"...mostly for the music. I think he believes it is about him or he could be the main character. He also loves "The Andy Griffith Show" or "The Beverly Hillbillies."
  7. Thank you Sue for your comment. We have an appointment next week with the Neurologist. I had addressed this with the doctor two months ago. That got us a referral for speech therapy. In the course of two months he has improved but it still is on my radar. So, I definitely am bringing up the silent movie routine. Actually, my husband has always watched the same movie or program over and over from the beginning. He also has had anxiety from the beginning so that was discussed with the doctor as well. I guess, stay tuned for an update.
  8. A young woman is lying unresponsive upon a frozen platelet of ice that is drifting rapidly toward a waterfall. As the river current rushes a bit faster with each and every second a man fleetingly skips across broken ice pieces to rescue this damsel in distress. With his heroic effort he saves the maiden just in the knick of time as ice sheets plummet over the cascading water. Of course, this man and woman then go on to live happily ever after… Some how, Way Down East, with out sound instilled a sense of urgency, fear, as well as, security and comfort to the onlooker simply with creative imagery. The cinematography captures movement, emphasizes emotion, and creates reaction with use of a simple visual effect. Perhaps, back in the day, one could hear the audience loudly gasp while viewing this 1920 American silent film directed by D. W. Griffith and starring Lillian Gish. Regardless of reaction, a movie with out sound is most likely unheard of in this day and age. Now, digital enhancement with surround sound accompanies every movie. Or so it seems. Go butter up the popcorn folks because it is show time. Sensory over stimulation or 'Flooding' occurs after brain injury because the brain's 'filters' no longer work properly. It is an exhausting situation if more pieces of information or stimuli are received than what the brain can handle. Things like large crowds of people, bright lights, or alarm sounds can cause discomfort. Certainly, the stroke patient has enough to overcome with out throwing this piece of driftwood into the river yet it does seem to go with the flow doesn’t it? Twizzlers anyone? A new turn of events has transpired with my stroke survivor. Over the past few months he has been watching movies or television shows with no sound. It doesn’t happen everyday. Yet, the first time I noticed this silent movie routine I was busy going about my day tending to things I needed to tend to. Among my haste I could hear my husband belly laughing, speaking out loud and/or then crying along with this entertainment box. At first, I didn’t rush to his side because it seemed he was simply reacting to whatever he was watching. As he sat in his recliner with remote in hand it became apparent to me that he seemed to be having difficulty with the remote or so I thought. His response to my dart throwing of questions was of a silent and confused nature. I picked up the remote, pushed buttons to confirm it worked, handed it back to him and commented that everything seemed to be working accordingly. Perhaps my movement was too quick and much like that of the ice platelets jetting over the falls because he turned the TV off. After a while, I realized he all along was just watching TV with out the sound. Usually, during commercials. Upon my perplexing discovery that there was nothing wrong with the wall mounted wide screen audio device I questioned his action. Looking at me with wide eyes like that of Ms. Gish he said he wanted it that way. I, with much the same dramatic reaction asked, “Why?” Simply, he softly said, “They say what I want them to say.” Can someone pass me the Junior Mints? Some weeks have past and I still have raised eyebrows. As a caregiver I want to assist my stroke survivor the best that I can. Cognitively, he has had difficulty in this past year. More so after he was hospitalized back in December with what doctors concluded was a virus. That is a whole other story. He has definitely done the two steps forward and three steps back last year. As we all know, each stroke survivor heals differently and at their own pace. I will also go as far as to say each caregiver responds in a way that is uniquely theirs. Maybe my stroke survivor is drifting with a current down a thawing river and I am jumping here or there on the frozen barges to come to his rescue. It seems we are always living like that silent movie. When is the intermission, I need some refreshment? So, as a highlighted awareness of sensory flooding, also known as sensory overload, motions its way into our theater my stroke survivor and I go on to live happily ever after without all the bells and whistles. Tonight’s double feature is repetitive viewing. Did I mention that along with the onset of silent movie watching my husband also watches the same movie over and over? Hand me the popcorn bucket, I’m going for a refill. As the screen goes to a darkened and blank screen two simple words softly phase in…they state…The End!
  9. Strokewife

    Memory

    Memory- All alone in the moonlight…I can smile happy your days (I can dream of the old days)…Life was beautiful then…I remember the time I knew what happiness was…Let the memory live again… While I found myself sluggishly gazing at a moonbeam shining itself through the window late one night not so long ago I softly sang a few bars from the song Memory. This song is from the 1981 Andrew Lloyd Webber musical Cats. Grizabella, a character in Cats sings the song. She is a very old, disheveled cat who in this song harks back to her days as a glamorous dancer and declares her wishes to start a new life. Suddenly, my mind drifted in thought about my stroke survivor who was lying not so quietly asleep next to me. It has been over two years since his first stroke. He had a second stroke almost exactly one year prior to the first one. In those two and a half years my husband seems to have settled. What I mean by this is he isn’t so eager to work on recovery. It seems he is more just about existing. We still go to therapy but not as often. He takes himself to the bathroom daily but not always without assistance. Dressing himself has not improved. Preparing lunch by him does not happen. Basically, working the remote for the TV is his greatest skill post stroke. Certainly, I hope I do not sound trite or disgruntled. I very much continue to encourage my husband with every flip of the coin. Thus, the point of this thought regarding a song called Memory is about that very thing-his memory. My Stroke Survivor still has a large collection of vinyl record albums along with the stereo equipment to play them. However, none of this stuff was connected or working with our more modern day equipment. This was a hat I chose not to wear. So, one day after hearing him moan about how badly he would like to play his records I called a good friend of his who shared the same sentiments and ask if he could get the turn table working. Again, I must stress this was not an easy task to accomplish but the end result was successful. Of course, I found myself even more appreciative of modern technology and a thing called Amazon Prime. I love that I can download songs to my phone and play them with the press of a button. Anyway, now there are many days that I am requested to find an album and place it on his turntable. Greatest hits from the Eagles, Bread, Boston, Chicago, and Bee Gees are to name but a few. Did I mention he can’t pull the albums out from their cover and place them on the turntable himself? Thus, I have been getting a good deep knee bend work out. Anyway, after listening to an album each time he reflects upon a story back in the day when he was a DJ. He tells the tale with great enthusiasm and passion. The light glistens in his eyes as he expresses his secret on how he had the dance floor packed each night he worked the booth. Somehow as my Stroke Survivor reminisced it registered with me just how much he has music playing all the time. Often he will turn the TV to the music channels to play continuous music rather than watch a movie or show. When we go outside to sit and enjoy nature he will turn his phone to play music. And now that we have a 1980’s stereo working he has the radio, DVD or album playing. Suddenly, I became very aware that he like his record on the turntable is rotating in a world from his past. Therefore, as I pondered the thought about my husband I recognized that he has somewhat moved himself, since the stroke, chronologically through time starting back when he was a young boy. Currently, he is reflecting on the eighties. On the other side he doesn’t seem to recall much of the more current years. I said many months after his first stroke that I had learned so much about my husband. He talked about things I had not heard about like his GI Joe collection he sold for a great deal of money, his fort in the basement where he hid from things that scared him, and a tree house outside where no girls where allowed. As he moved through his years I started feeling like there was so much about him that I didn’t know. I believe he is stuck in the eighties because it was a very happy time of his life. Oh we still go back to his childhood days when he was just like Karate Kid but more times than not we come back to his DJ days. Sometimes I am sad when I talk about a memory that involves the two of us like the day he proposed to me and he doesn’t seem to recall. So, I do find this memory thing an interesting concept my fans and wonder if there are others along with me that are living in their yesterdays? Memory- I must wait for the sunrise…I must think of a new life…And I mustn't give in…When the dawn comes…Tonight will be a memory too…And a new day will begin
  10. Recently, as I assisted my stroke survivor with taking his nightly medications, helping him maneuver into bed, and removing his shoes I mentally ran down the check list of all necessary things he requested on his bed side table. Simultaneously, I sighed. I consciously was aware of the throbbing pain in between my shoulder blades and lower back causing me to move a bit slower than normal. I felt tired, weepy, and angry all in one. Certainly, I did not mention my frustration to my stroke survivor but somehow I know he knew. It has been over two years since I became a caregiver for my stroke survivor. In that time I adjusted just about everything in my life to focus solely on taking care of him. At first, I didn’t think twice about it. I would approach each day with an above board way of thinking. There was a lot to do and not enough time to do it. The hope that engulfed me allowed for enthusiasm to help him in his daily therapies. Others called me a saint for all I did for my husband and commented with statements claiming, “They didn’t know how I did it.” Honestly, I don’t know how I did it either. But, I pulled strength from a trust in a higher power and each night I could rest knowing things would be O.K. The biggest driving force was the hope, or more like the expectation, that my stroke survivor would have a complete recovery. So, on this night when I routinely assisted my husband I quietly excused myself from the room once he lay slumbering and I wiped tears from my eyes. Mostly, this came about because of our latest doctor’s visit that encompassed yet another statement regarding my stroke survivor’s unfortunate circumstances that come by way of genetics. My stroke survivor is genetically blessed with high blood pressure, which gifts him with the pleasure of taking a plethora of pills. He has grown tired of the routine morning and night of tossing back a mouth full of medication followed with a chaser of milk. He grumbles when I take his blood pressure. Whining is prevalent with each doctor’s appointment. I have become at a loss for words. I have become weary. Thus it has been suggested that I need a break. All this brings to mind a moment I had at the beginning of all this care giving education. Once my stroke survivor completed his initial six weeks of In-patient Rehabilitation we brought him home and began Outpatient Rehabilitation three times a week. The beauty of this time was it allowed me some time to do errands without concern for my stroke survivor. Meaning, I had free time from my husband but not time for myself. Things moved quickly and I was juggling so much I knew I was going to drop a ball or two. One of the physical therapist noted I looked tired asked if I had taken some time for myself. She, in what seemed like slow motion, stated “Respite Care.” I just smiled and said I was looking in to it and appreciated her concern. Secretly, I was thinking, “Respite, What?” “What the H-E-double toothpicks was respite care?” Between you and me, my dear readers, I had not ever heard the word respite until that day. I don’t know why I had not heard the term before because I had worked in the health care field and seemed rehearsed on such things. Trust me, I went home that evening and Googled the meaning of respite, which is A short period of rest or relief from something difficult or unpleasant. Of course, I also searched for providers in the area. I actually called an organization that did the research for me. In the days that followed I received calls from various places wanting to talk with me about home care giving assistance. I met with a few. I signed up with a group just in case. There was no obligation so why not. Yet, it would cost approximately twenty dollars an hour with a four-hour minimum. Somehow, I found this more stressful than what I had anticipated. I wasn’t sure whether I could trust a hired caregiver. I asked friends, co-workers, and family about people, groups, and assistance. Needless to say I did not hire the so-called “Respite” person. Bringing me back to the juggling again. This brings me to my final thoughts regarding this subject. Now, I can say I have got to a point, after two years, where everything seems overwhelming. Perhaps it is because I am so tired of the day to day routine. Likely it is because I miss activity that went bye-bye when a stroke appeared. More so, it is simply as defined I need a period of rest or relief from something difficult… Lastly, what have you done my followers to find respite?
  11. I have said many times...I would just like a driver...someone to take us and do all the maneuvering in and out of the car. I am sure I could have such a person but not without a cost. Most of the things I desire for my husband are things that would make it easier for me. The spa idea came about because I have always like to do that kind of thing and would like to take my husband but know I wouldn't be able to do so without help. So, I thought why don't we have these things. In every therapy group my husband has been apart of they have set up for bathroom, kitchen, and bedroom...you know to practice...so why not allot time in therapy that would be bath day completely staffed with those who can assist. It just seems like an easy thing to install but those who pay for the therapy (ie: insurance, medicare) don't incorporate this. When we spoke to the doctor about it he signed for home therapy to come to our house. Somehow, they deemed my husband as doing so well on his own that he didn't need that therapy. All the while I was saying it was for me...to help me. Ho Hum! Anyway, thanks for taking time to share.
  12. Thank you Sue for sharing. You always have such great words of wisdom. I haven't quite got to the point of swimming myself but I am taking the time to just rest, read, and relax. I find it nuts that we have to fight for care. My husband would not have what he has gotten thus far had I not walked the extra mile. I often wonder how many are out there just sitting in a corner at home because they do not have an advocate. Thus, why I bring up the topic all together. An interesting side note: There was just a news article talking about a water park for the disabled. It is in my home state of Texas...it is more for children, but signals went off in my head when I heard this that I need to contact that facility. So, stay tuned...I may have more to report.
  13. Well, I guess it is safe to say you are not alone. I, also have these moments of "outburst" by my husband. I had a therapist say to me one day when my husband was talking rough and shouting not so nice things that it is the stroke talking not my husband. I have carried that with me over the past two years and it makes it a whole lot easier to allow these moments to roll off my shoulders, as well as, out of my head. It is very hard to watch someone you love act inappropriately. Likely, even harder when you know they can't control what they are doing or that they will forget. Before, my husband had a stroke one of the things that happened in our house was with our dog misbehaving. He would scold him and put him in a pen for time out. It used to drive me crazy because I didn't think it needed to go as far as confining him. Anyway, after the time out was over our dog would always be so affectionate toward us. My husband would always say..."It is a new day!" Meaning the slate is clean and we will start like nothing ever happened. So, I use that same mantra when my husband has his moments. Later he is always calm and speaks to me with kindness (which is my sign that he truly appreciates all that I do) and I think to myself..."It is a new day."
  14. The second anniversary of my husband’s first stroke and the day I became a caregiver recently transpired. Upon this anniversary day my stroke survivor began aquatic therapy. This is something he wanted to do for sometime but being wrapped up in a medical system that dictates the where, when, and why we had to wait. Thus, good things do come to those that wait. My husband’s ability to do things on his own is still very limited. I, at this two-year mark, still assist my husband with most tasks such as dressing, transferring, hygiene and food preparation. Certainly, he puts forth an effort to try and do things himself, but most times will need assistance or accept I will do it for him. Often, I have to encourage him to try something himself. Frankly, his mind can not always rationalize doing these things on his own. So, as I assisted my husband into a lift chair that would lower him into the water I held apprehension. The therapist standing over six feet tall took my husband out of the chair and starting him walking backwards. Back he went, then forward and then side stepping. They had him kick his knees, move his arms, step up and down on steps, and hold himself in place. Over and over they assisted him to perform…Perhaps cognitively this moved a bit too fast for my husband yet he did it. Don’t get me wrong the therapist was holding onto him the whole time but my husband was moving his left arm and leg on his own as if it was not a problem. I am pretty sure my mouth was gapping open in amazement. As we exited the pool and moved to the handicap restroom we entered into what I will just say was a “God send.” This designated family washroom had a shower with a bench and bars for the handicap. The same was in the toilet stall along with an additional dressing bench equipped to assist the disabled. I was able to help my husband with showering in an environment that was clean, private and spacious. I suppose it may sound silly, but our “make-shift” bathing arrangements we have at home has made bath time a tedious task for me. Yet, on this day a beautiful gift was presented to us. With all this “gifts from heaven” that I felt was laid before us it reminded me of the limited resources that stroke survivors are given. Specifically in my husband’s case he is young…not yet a senior…so the resources we have for adult day care are few and far between. I am not saying they do not exist but in the area we live it just isn’t plentiful. It makes me ask “Why?” We have several hospitals that are STROKE trauma centers in our area. Which would imply knowledge of brain injury therapy and means for unlimited resources. Yet, as my husband and I went through a system of therapy for a stroke “victim” I became aware of just how limited resources are for those who become young stroke survivors. Our journey was very rough and I know there were things that could have been much easier than they were. That is all water under the bridge…More so, I can say, my dear readers, I have been made aware. I want to pursue the idea of a spa setting that caters to the handicap where one can go and soak in a bath with out fear of drowning or even just getting in and out of a tub. Perhaps, finding a place for individual who need daily assistance but want to socialize and feel normal. I feel compelled to research this idea. My husband is a stroke survivor…I am his caregiver, but this journey has led me too more than taking care of him. Therefore, I simply pose the discussion to my readers regarding limited resources for stroke survivors and what you have experienced or done in your area.
  15. It was a moment in early fall when my husband, like he always did on his day off from work, went outside to cut the grass. As he stepped out onto the back patio he heard the sound of humming. Perhaps it could be described as a gentle whispering of the wind like that through a whistle or more specifically a tone from a tuning fork. Regardless, my husband looked up into the sky thinking there might be some sort of spaceship overhead causing the hypnotic sound he was hearing. But, instead, he witnessed a moment he will never forget. There in the back yard, as well as the prairie field behind it, was a migration of dragonflies. Now it is a common thing for dragonflies to migrate south for the winter. It is just like ducks and birds going where it is warm when the cold spell hits. Why the dragonflies are mystical in this case is they usually flock to watering holes. Dragonflies by nature are bountiful along a lake or river. So, when my husband saw this flight of the dragonflies in our back yard he ran inside and grabbed his video recorder. With out further hesitation he filmed for a good five minutes these winged creatures fluttering around our Texas hot prairie land. As I viewed the video myself I exclaimed “Ten thousand angels…Honey, you were blessed by a visit from ten thousand angels.” Certainly, my response when he shared the experience of that once in a life time day was of elation and praise to one higher than one’s self. Of course, one might argue that angels and dragonflies are two separate things. I for one lean to the side of blessings and find comfort in believing these unique shaped insects are angels watching over me. Obviously, there is a verse from the gospel of Matthew that I borrow from and/or reflect upon with the mention of legions of angels. In this Bible scripture it uses the word legions, but there is a song written by Ray Overholt based on that scripture and he titled his song ten thousand angels. The song chorus states…He could have called ten thousand angels to set him free. O.K. I might be getting of course a bit, yet I felt I should clarify my initial reaction to this epic event. So, today, my husband and I went to our favorite restaurant with the patio that overlooks a lake. While we sat and enjoyed the sunlight beaming down and the gentle breeze cooling our face my husband noticed a dragonfly frolicking about. As he watched it dance among the cattails and water lilies he talked nonstop. He reflected back to a day of old; A day when he wasn’t in a wheelchair and had use of his left side. He started talking about the day he saw a legion of dragonflies. He told me the story with every detail, like it was a moment that just happened. We talked about how he recorded that momentous event and how we would watch it when we got home. Basically, my stroke survivor, in that moment was simply my husband. He, was my husband, the man visited by ten thousand angels…