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Found 14 results

  1. Caregiver Chat in the Stroke Caregiver Room from 8pm - 9pm EST with Host Sally
  2. “Zooom, zoom, squeal, crash, bang, boom…woof, woof, arf, arf…vroom, vroom, squeeeeal, zoom…” The clock reads 7:39am as I once again pull the pillow over my head. I pray to God for the madness to please stop while shouting at my dog to stop the barking. Every Wednesday morning I have what I call, “The fricken trash man hatred.” It is every Wednesday morning at a, much too early for me to process, time of day that I realize there are these small things in life which are more important than I ever considered them. There are these minute things that have fallen off my radar. I realize that the simplest of task known as taking out the trash has now befallen on my list of things to do. As a caregiver I expected I would take on task that assisted my husband in his daily needs. I prepare his meals, help him get dressed, and keep track of his medication. Each day I help him maneuver from one place to another without thinking twice. I do the laundry, wash dishes, and clean the house. I drive him to his appointments, therapy, and various outings. The list goes on. But, the chore of taking out the trash somehow slipped my mind. You see, taking out the trash has always been my husband’s chore. I would gather garbage from the smaller canisters around the house and compile them all into one large bag that my husband would carry out to the larger bin that sat in the corner of the garage. All the recycling went in one container and trash in the other. Every Tuesday night my husband would take the trash and recycle vestibules out to the curb. It was an unmentioned task. He always just did it. Somewhere around a two month mark from the date my husband had his stroke this trash chore became apparent to me. I guess because he was in the hospital and I wasn’t home too much there wasn’t much trash. Yet, as I started cleaning, compiling, and sorting through things preparing for his arrival home the trash mounted up. I would bag it up in the larger bag and place it in the pantry. So, one day when my husband was finally home from the Rehab Hospital and I was diligently catering to his needs I opened the pantry door to dispose of the dirty waste. While I would like to say that I picked door number two, like on “Let’s Make A Deal,” with a fabulous prize awaiting, it was more I was bestowed with the booby prize. Behind the pantry door was where trashed had piled up for weeks. I think it even fell out onto the kitchen floor when I opened the door. The odor was one in itself. I am pretty sure I cried. I didn’t cry because of the trash…but I cried because of the trash. I in that moment on that day was made aware that there was one more thing I had to add to my list of things to do. It is this smallest of thing that leads me to write today. I believe I am a good caregiver. I address the needs that are most important regarding my husband. I even work to include him back in doing functions he once did. Yet, while I lay with a pillow over my head, screaming for everybody to just stop, I realize the role of a caregiver is highly underrated. It is the moment I realize there is a huge hole in the system that helps those who help. Certainly, I am aware of support groups and organizations that I can call. I can create a list of individuals to call when I need help a mile long. And, I have the means to search out such help. But, when you wear the hats of many task and you find another hat has been added it seems reasonable to be allowed a moment of meltdown. More so, does anybody really call someone to just come over and take out the trash? So, on this day when I hear the garbage truck making its round and I realize I forgot to take the trash bins to the curb, I gather all the strength I can, get up out of bed to take out the trash. My dog finds it a favored time and gleefully accompanies me to the curb. And I, of course, can only hope no one is watching. As I in my pajamas, a hair do that no one would ever pay for, and attitude that would wilt flowers, role the trash bins down to the curb before the garbage truck gets to my house. It never is a graceful moment. I then go back inside to nestle back in bed only to know I soon will have to get up. Can I just say…I don’t love trash day!
  3. When I was a young girl I had the weekly task of dusting bookcases, end tables, and other furniture odds and ends. Every Saturday morning my siblings and I would do our assigned chores before we were allowed to go off to our free time activity. I was the youngest of five kids so I somehow seemed to luck out and always get the minimal side of chore assignments. Given that I was a very small girl it seems logical to me why I was assigned the things I was assigned. My siblings didn’t necessarily agree. As a girl, with an over the top imagination, more times than not I found myself getting in to some sort of trouble. Often, I was left having to sit quietly in time out and think about what I had done. We didn’t call it time out back then but it followed the same guidelines. I was sat down on the floor in the kitchen, asked to think about my mistake, and present an apology when I was ready. Maybe this is why today my brain is filled with an ever-flowing stream of imaginative information. On one particular morning as I dusted to my hearts content I found myself interacting with the various figurines that gracefully adorned our home. I was in a world of my own talking to these porcelain pretties and creating a world of wonderment. My mother had a beautiful set of angels. Each angel represented the months of the year. These intricate beauties were adorned with a birthstone, along with a floral bouquet representing each month. These winged statues were so precious to my mother that she kept them on the top shelf of a wall mounted bookcase. A bookcase my father built, no less. So precious were those figurines that she, for some reason, placed them far out of my reach. My mother always said those angels were pretties to look at but never to be touched. Yet, I was a climber. One Saturday morning I fervently went about my task of dusting and decided I wanted to play with those angels. You all see where this is going don’t you? I cannot tell you how I did it, but I somehow climbed up onto the back of the sofa, balanced myself on my tiptoes, and one by one, took down those angels. These little people with halos spoke to me and told me they wanted to fly. I without hesitation strategically placed twelve porcelain angels into a towel, folded it like a hammock swing, and began spinning around with those angels. “Wee,” I sang out, giggled, and proclaimed, “You can fly, you can fly, you can fly.” All was grand until I slipped. I fell to my knees, dropped the towel, and pieces of porcelain went everywhere. With the abrupt sound of breaking glass my mother miraculously appeared in the living room to find me amidst her now broken angels. My mother, I am sure, wanted to tan my hide and bite her tongue from saying not so nice words. Instead, she simply checked to see if I was O.K. and then very quietly picked up each piece and part of those angels. I, of course, was crying and saying, “I didn’t mean to Mommy!” Never did she raise her voice but more consoled me. Later that day my mom and I sat and glued those angels back together. We placed them back on the shelf as if they were, while scarred, brand new. For me, in calling up that memory of those angels I find that they somehow are an analogy in my life as a caregiver today. My husband is like those precious angels. He with his stroke is slightly broken. But with each day and some consoling he mends just like the angels that were glued back together to look brand new. And then the manner in which my mother so effortlessly placed me first by asking if I was O.K. before a bunch of broken figurines speaks volumes as to what matters most. I, as a caregiver, can only hope that I am like my mother and remember to put my stroke survivor first before any mood, object or thing on those days I feel beyond frustrated or exhausted. I hope I, as a caregiver, am like those angels and a deserving halo is floating above my head. And, in case you are wondering, I still have those angels. They are placed high on a shelf so to not be disturbed. Sometimes I think they still speak to me. Only now, they tell me I am doing an excellent job at care giving and everything is going to be O.K…
  4. About day three following my husband’s admittance into the Intensive Care Unit I was beyond exhausted. I hadn’t slept, eaten, or really come to terms with what had happened. Ideally, I expected him to just wake up, ask for something to eat and say, “Let’s go home.” My husband had every monitor possible attached to him. Not to mention the revolving door of technicians, nurses, therapist, and doctors coming into his room nonstop. With every person that entered the room I ask question after question as to what was going on. I even ask the housekeeper. In my mind I needed to understand. Call it a type A personality or Obsessive Compulsive Disorder but I needed someone to define for me what the “H” “E” “Double Toothpicks” was happening with my husband. What was this thing called Stroke? What did it mean? Why did it happen to us? Who was going to tell me the truth? How was I going to fix it? Whether it was my need for sleep, my means of processing or my plain old desire to get my husband help I had a moment of complete frustration. If truth were to be told, it was more than just a moment but you get my drift. It was this day, three day in, that a caseworker introduced her self to me. It was this day that I absolutely recognized my role as Caregiver and the journey I was about to take. Perhaps my circumstance was different than any other and could not be categorized. Maybe it was so unique that it was a learning experience for my particular assigned caseworker. I don’t know but when I ask, “If there was a check list to aid me in what I need to do,” I got a deer in the headlight look followed by a “I’m not sure what you are asking.” comment. I was told, “There is no checklist.” I shook my head and said “Seriously?” “There is no check list that can be given to a caregiver as to the first things one can do?” “Well, you can always check online…there is a lot of information out there,” The caseworker said. Ironically, I apologized to this individual and claimed, “I must not be speaking clearly.” “You are telling me there is not a simple things to do list that you could provide me.” Again, she said, “No” So, I sighed, thanked her for her time, and turned my attention back to my husband. My sister later confirmed for me that I was not inappropriate or out of line. She said I actually was very calm, cool, and collected asking a very reasonable question. In my mind, however, I believe my head spun around, my tongue lashed out, and I fell on the floor kicking and screaming in an unruly tantrum. Please don’t get me wrong, I believe this young girl was doing her job as best she could but in the moment that I was so deprived the last thing I had time to do was surf the internet. I vowed at that moment I would create a check list when time allowed. “Your loved one is in the hospital…Start with this” This consumed my thoughts. Things like organize your important papers, contact family, write down names of physicians, list the medicines, and eat something are to name a few. It might be small but if there was a list that stated these things when one is not able to think the Caregiver’s life might have a moment of relief… So, dear readers, I ask, “Why is there not a simple checklist?” “What do you think should be on the check list?” Please help me create a universal checklist that can be used by caregivers…
  5. “Just go in the Emergency Room entrance madam and they will take care of you,” were the words calmly spoken to me by the paramedics. They would go to a designated entrance with that special cargo known as my husband. I was to go to the Public entrance. Of course, I followed the ambulance closely while simultaneously biting my nails and praying that everything would be O.K. Pulling into the first parking spot I saw I hurriedly parked and scurried through the doors only to be directed to have a seat. With in the first few minutes of my arrival to the hospital emergency room I was made aware that the trauma surrounding me was of no significance to those behind the glass divider. Upon the first words spoken it rang out like bells in a steeple; that I was just a number. Why this matters to one wife of a stroke survivor may not be that pertinent. But when I acknowledge the vast amount of individuals who are thrust suddenly into a world of fear upon walking through those doors of a hospital each day it somehow seems important. Somehow, those scenes portrayed in the medical TV dramas don’t emphasize this not so miniscule detail surrounding hospital emergency. Basically, my husband was alert, talking clearly and fully aware when the paramedics loaded him in their van. He just couldn’t move on his left side but because he spoke for himself I had it in my head that this wasn’t so bad. When I stated to the front desk I was here with my husband, whom was just brought by ambulance, and asked to be directed to his room I was greeted by a nonenthusiastic, “Have a seat and we will call you.” monologue. It was added that they were still checking my husband in to a room… This, my dear readers is even more so when I became aware that I was now a number in a system. No one seemed to care that I was scared, worried, confused, tired, panicked, and still in my pajamas. I sat in the waiting room far longer than I should have. I was left there in a waiting room to pace, wondering what was taking so long, and debating if I should call anyone. More so I wanted to be by my husband’s side, holding his hand, not nervously pacing in a waiting area wishing I would have road with him in the ambulance. In reality these people were doing their job but as I watched the desk clerk, the various individuals come and go behind her desk, and the clock I became angry. I felt 45 minutes was beyond a reasonable amount of time that had lapsed. I scurried to the desk once again and harshly requested to be taken to my husband. Conversation took place among those behind that glass and finally I was buzzed into the Emergency Room as if there were an underground casino establishment. It was when I entered the area where my husband had medical staff scurry around him that I heard, for the first time, the word “Stroke.” From the moment I learned that my husband was having a stroke I felt like I was swept up into a tornado. Questions were hurled at me regarding my husband’s history, insurance, and how would we be paying today. “Did he have a living will, advanced directive, or DNR preference?” On and on the questions and comments were tossed at me like daggers. My brain was numb and slow to respond as if I was dreaming. “I didn’t know all the answers, but I did, I just couldn’t think at that moment.” Somewhere in the midst of it all I stopped and looked at my husband…All the nurses, the doctors, and the machines moved in unison with one another. Never once did anyone or thing acknowledge the emotion I was feeling in that time or the role I had just been thrust into…I, just became a stroke survivor’s wife without warning or alarm. I didn’t know what to do. I hadn’t asked for this or prepared myself. How could I? It was the unknown. I didn’t know if I could trust anyone. Yet in the same token those treating my husband maneuvered with such certainty. It was like I was pulled into a country line dance only I didn’t know the steps. I truly felt the expectation of the medical personal was that I should know… “That is it, they did what they do and now that I was in their midst, a new caregiver, I too should know what I am to do…” Certainly, I do not wish to demean those who work in the medical arena for their service is important. However, I do desire to create awareness. When someone requires Emergency Room treatment it is difficult to be a loved one on the other side. We are an extension of the patient but not the patient. We are immediately brushed aside, but also at the same time made to be a part of the care giving team. I questioned that night, I questioned that next day and I questioned for weeks, and I still question “Where were those in the health arena reaching out to help me?” Perhaps it was customer service issues, minimal staffing, or the time of day. At that moment of crisis when I had entered the doorway to a new world I just wanted one person who was assigned to get me some water, hold my hand, note what I need to do, and interpret what medically was being said to me. So, my quest, with this blog, is to erase “The just a number factor”…because loved ones and/or caregivers are far more than just a number.
  6. This year is Leap Year. Which means we have an extra day added onto our calendar. This has always made me ask, “Why it is called year if it is just a day?” “Why not just call it Leap Day?” Anyway, with that awareness the thought jumps around in my head, “What would I do with an extra day?” As a caregiver, time for myself is something I get little of and I crave. It isn’t that I do not take time for myself but more that time has to be strategically planned. Oh the thought of going and pampering myself with a pedicure, massage, and facial runs through my head. Taking in a movie, mindless shopping, or oil painting like days of old crosses my mind. Even just going for a walk in the park, followed by a lunch outing make the list. And then reality sets in and I think, “Just a long uninterrupted nap would be nice.” I don’t seem to get enough sleep as it is and now, as a caregiver, it is always in segments. So a day to just cuddle up in the covers and get served breakfast in bed sounds heavenly. I envision myself as the Scarlette O’Hara character in Gone with the Wind or even more recent Lady Mary Crowley from Downton Abbey where a maid enters my room with a tray of the finest delicacies and waits on me hand and foot. What can I say, I am a dreamer. Basically, what I realize is that I miss those days before the stroke when my husband and I would go on impromptu outings. It was not out of the ordinary for us to load up our dog Max (miniature dachshund), a basket of wine and cheese, and go to the lake to soak in all that nature gives to us. Don’t get me wrong, we do these things now but it is different because I must do most of the work. It is work to get everything in the van. It is work to pack and prepare food for the both of us, as well as, Max. It is work to pack a “Husband Bag.” I do all this then it is work to load him, my most precious cargo, in the van. Sometimes we go to the destination and it will last fifteen minutes. The moment I had planned for a nice outing becomes overcast by a scurry to get my husband back to the comforts of home. He sometimes has anxiety so the outing becomes less enjoyable. This in turn strikes up sorrow with in me and I have to bury it because I don’t want to upset my husband. I crave those days when my husband would surprise me and serve me breakfast, or prepare a nice dinner with wine that he strategically picked out all with a story of how much I mean to him. Certainly, I still have special moments with my husband it just always includes assistance from me, the caregiver. All in all, I have adapted. I plan fun activity at home because it is easier. I order carry out so I don’t have to cook. I rent movies so we can watch them at home. The list goes on of things I do to take the burden off of myself but the one probing thought that still remains about Leap Year is, “What does my husband crave? What would he do on this extra day?” Oh sure I still think, “What would I do with an extra day all to myself.” Balancing having my own time verses time care giving for my husband would be grand. It is like creating a piece of art. There is a blank canvas, oils in various hues, and brushes to bring the two together. It is a masterpiece continually being adapted to perfection. Mostly though, what I realize with this thought about an extra day is that I have my husband in this day. I thank God each time I watch the sunset for having stamina to care for my husband at home. I praise the miracles of healing surrounding him. I am filled with joy for each moment we have to plan movie night, to plan what food to order, and to find comfort with just a touch. After all, it comes down to what matters most doesn’t it? For me, that is my husband surviving. So, on this extra day I plan to spend my “Leap Day” with a wonderful man who is a Stroke Survivor. I plan to savor every moment because who knows what tomorrow will bring. I plan to embrace that I am a caregiver and smile proudly while doing it. I plan to Leap with Joy on this day. So, my readers, I ask the question of each of you: What will you do this Leap Year Day?
  7. For some time I have been mulling over the idea of starting a blog…Way back when, I thought about a blog for Massage Therapy to incorporate the insights of alternative therapy. I even went as far as setting it up…I think there are one or two stories on that blog. Time slid by and I never blogged more than those few notes. Certainly, I don’t discredit it because it is still a good idea but in the past summer I was thrust into an experience that I never planned on…That’s when I became a stroke victims wife. With all that is involved around someone who has had a stroke it became a daunting task to get through each day. Somewhere, I said I could be of help. Then time went on and I had not drafted one word…Today, eight months later, I have decided that the excuses stop here. I have become aware of so many things and I must write about them. So my dear fans as I embark upon this journey that some of you may follow and others will find too insignificant I heed your support for there is much to learn in this world of circumstances. With that being said…Let’s begin: Blog 1: Vision In June last year my husband had a stroke. Upon that day, I became the wife of a stroke victim. This title didn’t really define itself clearly and I didn’t really want it. Basically, my life was turned upside down. It was everything I could do to just get through each day as my husband lay in a hospital bed fighting for his life. A fight it was…I barely left his side and when I did it always seemed like the worst would happen. Guilt became a regular visitor while I lived in a recliner chair conveniently located by my husband’s bedside. Oh, certainly, there were times that I had family and friends to assist me with the ongoing task of support. But, at the end of each day when I was so tired I could not function I would lay back in that recliner and hope for something better to present itself in the new day. Each day, that “something better” would actually show itself. Yet, each day would have landslides that kept tears falling down my face and I can only describe as horrible. It was a time that I would never want anyone else to experience, nor would I want to revisit. I prayed for understanding. After a months stay in the hospital my husband was moved to an inpatient rehabilitation hospital. Each day they scooped him out of bed and took him through a schedule of therapy. While this was effective…it was robotic. I found myself with moments to breath…rest…and take care of the “Over the top” paperwork. My husband would do the exercises they told him to do; yet, he couldn’t do the exercises they told him to do. As his wife, his caregiver, and his love I ached to see him respond. Again, much pain filled my being. It was during this time that I realized the simplicity of being able to take a sip of water, to turn to your love and smile, or to walk to the bathroom when you feel the urge. I realized how much I took for granted. I realized how quickly we can have something removed from us. Awareness of what is most important was knocking at my door. Somehow, in all this turmoil I received vision or clarity. And as my eyes have been opened, my dear readers, I was made aware that this vision needed to be shared. So, today I begin blogging as a stroke wife’s life…and I simply ask you to please join me.
  8. What I've been up to: THE ONLY GLOVES I MANAGE TO KEEP ON - FINGERLESS FOR MY DOLL
  9. Bob has improved enough that I now have time to think about me and the things I used to enjoy doing. I am digging out projects that were started before Bob stroked and trying to finish them. I don't want my life to be defined by a home filled with incompletes. Before I really had no choice, and gladly gave all my time to Bob's care, but now there is time for me too. So this blog will be about me, picking up some threads of my life where they were cut off, and trying to fit me into my life again. I am now reading on my IPOD and a kindle. I don't lose them all the time, like I used to lose my book and not find it till I didn't remember what it was about anymore! I'm very surprised to find I enjoy reading on my ipod, as I always thought phone sized things would be too small, but they are great and easy to hold with the loop around your wrist when laying in bed (if you snooze off & drop it the loop keeps it from falling off the bed!) I've had many hobbies such as scrapbooking, quilting, crochet, knitting, embroidery, cross stitch and tatting. Some more than others, some just a dabbling. I will share one of those recently finished projects that I finished Jan 1, 2015. This was started 1-11-2012, Bob stroked 2-29-12. Probably would have finished before his stroke, if we hadn't been still working on the other house to sell: Miss Winter Miniature Crinoline:
  10. Started June 14, 2014 and left to sulk in a corner since then. Finished last night around 2am. The color is actual a bright teal, but flash cameras can't pick it up right. RIPPLE RHYTHM DOILY.
  11. My mother called me yesterday. And when I picked up the phone she immediately went into a tirade about how she
  12. You see, I do spyware and adware removal on computers. But I haven't been doing much of that lately cause I haven't felt well. I do have a section for that on my own forum which I mentioned earlier this week in helping a member of this forum today. That's where I earned my keep. It's been awhile since I did what I did today. And it felt good to know that I saved someone from spending money she didn't need to spend. Some of the people who help me on my forum have convinced me to start a school to teach others how to do this and we will be doing that soon. As soon as I can get it online (as soon as I quit pulling my hair out learning a new computer language called linux) But it felt good to be a help to a member here today. I'm glad when I can do what my Code states: I am proud to be a member of ASAP. Liz
  13. But I thought I would let everyone know JUST what a sweet husband I have. He met me at the airport yesterday, Flowers in hand. Now, granted, it wasn't his idea but HE acted on it so he gets at LEAST half the credit. And thanks, Kim, for giving him the idea. Had a good time visiting friends but my body hated the trip. Liz
  14. We discovered yesterday that dh (my name for Charles) has some residual effects from the strokes and TIA