julskovac

Stroke Caregiver - female
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  1. julskovac

    The Next Step

    By julskovac,

    As I sit here thinking about the past seven months I can't help but feel that somehow I've lost my identity. When someone you love has a stroke or any life changing event which turns your life upside down you tend to forget all about yourself and focus all your energy and time towards that person.
     
    I have a few notebooks that I either carry around with me or leave scattered around the house which are used to write down to-do lists. I'm not really good at remembering things so lists are a great way to keep me from forgetting the more important things and also keep me motivated for the long-term dreams in my life. I happened to stumble upon one of these little notebooks while cleaning out some paperwork and found a list that I had written late last year before my husband had his stroke. I've been dabbling in photography and artwork for the last couple years specifically photo art. Last summer my husband and I spent a week at Cape Cod where I took a class in digital art and he spent time golfing and photographing the gorgeous beaches on the Cape. The class was amazing and stemming from it I created works of my own. I had been focusing as well on Mandala art, a kind of esoteric circle artwork created on the computer but then printed and painted. It was a humble attempt and I certainly don't plan on becoming a famous artist but it's such a relaxing hobby which I love. I really was so excited about taking the next step which included finishing some projects that were laying around and possibly selling some of my work. My list is as follows:
     
    Finish 20 x 20 mandala paintings
     
    Finish mandala tablecloth (my sister made me a beautiful painted tablecloth and I was going to add artwork to it)
     
    Frame existing art
     
    Finish the painting of my cousins Liz and Marge (a happy photo of them at a wedding turned into a photo painting and will be a gift to them)
     
    Set up the Artfire web site (I registered as a pro user of this web site and planned on uploading and selling my artwork here)
     
    Take another painting class
     
    Needless to say, none of the items on my list have been completed let alone started. Once the dreaded "stroke day" occurred all other items in my life were put on the back burner. It's been such a long journey and yet it hasn't been that long at all. Only seven months. In those seven months I've been scheduling doctors appointments, traveling back and forth between hospitals and rehab centers on a daily basis, working full time, organizing meds, filling out insurance forms, etc, etc, etc.
     
    On this day my husband is in the hospital recovering from heart surgery (even after a stroke) and it's a Sunday early in the afternoon. I got it in my head this morning that I've got to do something for me. Another item on my list which was not written down but has been in my head for the last few months was to clean out our spare room upstairs, put a new coat of paint on the walls and then make it into an art studio JUST FOR ME! The room was pretty empty already so at 7:00 AM in my pajamas I moved the remaining items into the middle of the room and washed all the walls. Now I can go out an get a gallon of paint and start working on filling this room with my artwork. Will it actually happen? I don't know. My list of unfinished items is pretty long and soon my husband will be coming home again and will need alot of care. My husband was also my very biggest fan and the one person that kept me thinking that I could be good at this. Now he doesn't seem to really to care too much about what I do. It depresses me. But somewhere back in my mind I think he does support me and then again maybe he can take advantage of this room and make some artwork of his own. God knows it's good therapy.
     
    One step at a time. First paint the walls, then put up some shelving and move all my paints and papers and supplies in. Maybe by the fall I can find some time for myself to play and doodle. Who knows, there may be a Picasso somewhere deep inside waiting to surface and then look out world!
     
    If you're interested in seeing some of my digital art work or Mandala art feel free to browse the following blogs:
     
    http://julskovac.wordpress.com/
     
    http://julciasmandalas.wordpress.com/
  2. julskovac

    Waves

    By julskovac,

    Wow, I didn't realize that it's been so long since my last blog post! Things have really taken a turn these past few weeks. My husband has now gone from stroke survivor to heart surgery survivor.
     
    Everything was taking its normal course (as normal as it could be) with regards to his stroke rehabilitation and healing up until a few weeks ago. Quite suddenly things took a turn for the worse. He wasn't eating at all, got more and more lethargic and increasingly difficult to get motivated. At first I was sure it was depression and possibly a combination with med side-effects. We visited the gp who prescribed an anti-depressant (Celexa). There seemed to be a slight improvement right after that but then a steady and quick downward turn which ended two weeks ago with me bringing him to the ER.
     
    My husband has a bacterial infection which is apparantly quite aggressive. No one can determine where it came from but it's typically a bacteria that shows up in the digestive tract. Unfortunately for him it somehow found its way into the blood stream and attached itself to a heart valve. So, less than one week after admittance into the hospital he had open heart surgery to replace the valve which was totally destroyed due to infection. A week later (today as a matter of fact) he's back in ICU. He was released from ICU three days ago but once again took a downward turn. His blood count was low and he was having trouble breathing. They found internal bleeding from the surgery wound so there is a possibility of him going back into surgery.
     
    Yesterday I started thinking that my life (as is probably true with most caregivers) is like the waves of an ocean. First you have the worst storm ever. At first sign of emergency your life is in total turmoil just like the waves pounding onto the rocks, churning and beating leaving no break at all in the constant pumelling. Then the waves start to subside. They're still coming up to the shore hard and fast but there's more of an acceptance. You're trying to calm down and "go with the flow" but you're still so agitated and confused. Finally the sun comes out. Things slow down and life seems to start getting back on track. The birds fly by and the waves are small, rolling hills and valleys that take more time to come and go. Doctor's visits, visits to the park, sometimes a little bump in the day. But there's always the next storm. Right now I'm at the peak of that new storm and trying to surf into shore hoping the sun will come out again.
  3. julskovac
    Today started off fairly well only because I was up early in the morning after somewhat of a good night sleep which I haven't been getting much of lately. My husband had nothing on his schedule except for a doctor's appointment at 4:30 pm. The routine now is to get up, check my emails, have coffee and maybe a light breakfast, shower, dress and then get together a breakfast for him and go to work. My son is helping out during the day on weekdays and I take over full time on the weekends.
     
    We originally tried breakfast after getting up and getting dressed but for three weeks in a row he had an incident of sudden drop in blood pressure, weakness and near fainting. The first two times he was rushed to the ER by ambulance because we were worried that it might be another stroke. But by the third time, after all of the CT scans, MRIs, EKGs, blood work, and so on, I just managed to get him to a resting position and everything was back to normal after 15 minutes or so. The question now is why was this happening. Since the last incident the doctor has basically taken him off all meds thinking that one of the meds was causing the issue. The other possibility is that maybe he was just hungry. So, now I'm making him breakfast in bed. Somehow I feel like maybe there's an ulterior motive or a plan he's hatching for me to become his slave.
     
    He's also gone to a neurologist for an EEG to rule out seizures and a cardiologist to rule out heart problems. So far nothing. Though now he has more doctor appointments than I can keep track of. The cardiologist was the 4:30 appointment today. I went to work and my son brought him to the hospital where I met both of them. I wish I had cancelled the appointment. You know how when you go to the doctor one thing leads to another and before you know it you're on 10 more meds with 5 more problems. The cardiologist agreed that maybe the weakness was due to the meds since he's been off of them for a week and a half and hasn't had another incident. But he did hear a heart murmur during the exam so he wants to run more tests. More doctors, more tests, more meds and more issues. We went from a completely healthy and physically active person to basically an invalid with more health problems than I can count.
     
    I guess I mentioned that I work full time. Top that off with the fact that my manager was just moved out of the position of managing our team and I've been asked to do all of the project planning. I desparately wanted to say no. I have no time to even think about work anymore. My productivity has plumeted and I cannot concentrate. Every waking second of every day I'm only thinking about one thing - my husband. But I didn't say no. I have to keep my job because I'm the only one working now so I'm being a good little worker.
     
    I drove home in a pretty glum mood. I'm just SO TIRED of all of this I just can't stand it anymore. We needed groceries for the next few days so my son suggested that I go grocery shopping while he makes dinner (fantastic son!). He's leaving for Vermont for a long weekend so I have to deal with everything for the next few days. I'm really not looking forward to it. The last couple of days I've been so exhausted all I can think of is that I want to lay down and sleep and do nothing for an entire week (kind of what my husband is always doing now).
     
    Dinner was very good and all was pleasant until I realized that my husband hadn't taken a shower in four days. You see, he doesn't ever want to take a shower. I try begging and threatening and trying to trick him but he just does not want to bathe himself. Or brush his teeth, or change his clothes, or anything. It's just awful. And we've had some horrendously muggy and hot days recently. So once again I suggested the shower in the evening this time. I explained that he smelled and if he showered in the evening then he wouldn't have hardly anything to do in the morning. Not to mention that tomorrow he has therapy starting at 10:00 (which means that either me or my son has to start around 7:00 to get him up and ready to get out of the house by 9:30). He literally gets violent now when I suggest the shower. He starts poking and pushing and yelling and just getting impossible to deal with. At first I tried nicely, then I stormed out of the room and told him he was disgusting. Finally I enlisted the help of my son to double-team him. I hate this so much it causes my stomach to turn. After about an hour and a half I finally got him into the tub with the water running and he finished everything himself.
     
    The thing is, he can do everything. Physically he can wash, walk, use both hands and both legs. He's doing so well. But his mind is not. Nothing motivates him. He won't do any of the exercises that are given to him at therapy. He won't do any activities except for watch tv. Should I let him just do whatever he wants to do? Should I force at least the hygene issues? He says he wants to improve. He has told the therapist that his goals are to get back to work and hike and ride a bike again. But, somehow he isn't connecting the goal with the effore required to reach that goal. It's so very frustrating. I keep thinking that little by little he's getting better but it's days like today that make me wonder if he will ever get to a point of being able to function by himself. The sad thing is that he can do it!
     
     
  4. julskovac
    After a long hospital stay and major life-changing event the patient needs something to stimulate him and motivate him, right? My husband ended up with left side paralysis in the arm and leg after his stroke. Much of it has come back thanks to the wonderful therapy that he received in two separate rehab facilities. For three weeks he was in Yale New Haven hospital. Towards the end of his stay they determined that he was an excellent candidate for accelerated physical rehabilitation because he was progressing so quickly. I am so thankful that we have good insurance. You know how everyone complains about paying the premiums for insurance but in the back of the mind we think "it's for that emergency situation". Well, this was that situation.
     
    He went to the first rehab facility at Gaylord hospital in Wallingford Connecticut. Their program is not for the weak at heart. The patients are up and moving almost immediately after they check in. They also have a great recreational program. This is where we were first introduced to Wii bowling. The rec director, Chris, is an enthusiastic and patient person. Every day he would make the rounds to all the floors announcing the rec program of the day. Movie night was typically on Friday. Card games, trivia games, make your own candle, plant bulbs for spring and Wii. If a patient wants to go and can't get to the rec hall himself then Chris will get you there and back.
     
    My son, his girlfriend and I were there the day Chris announced that they will have Wii bowling this afternoon. Cool! That sounds like a lot of fun. We showed up at the rec hall with my husband in tow. A handful of other patients had arrived all in their respective wheel chairs. Chris proceeded to start up the game and give us all instructions on using the controllers and game rules. Mind you, some of these patients have some serious disabilities. These are patients that have come to the facility in hopes of getting some kind of normal life back again but may never rid themselves of the chair again. These are people who are dedicated to recovering and don't let a little thing like Wii bowling get them down. Let's just say that these people killed me in Wii bowling. I was up there doing my moves just like I was at the bowling lanes but this one kid to the right of me sat in his chair and had such a wicked curve. I wonder if at one time he was a pro bowler? It was really so much fun and my husband loved it.
     
    This is the reason why I decided one week before my husband left his final rehab facility and finally came home that I would buy Wii. I bought the full package with two controllers, the nunchuck, Wii Sports and Sports Resort. I also broke down and bought Wii Fit with the fit board. Great therapy for my husband I thought and I could use it too. We hooked it all up and of course had to start with Wii bowling. By now my husband is just walking with a cane. No more wheelchair, no more walker! And, he's mesmerized by Wii bowling. I think it has taken over his brain. He will play it with or without me. He will sit on the couch and just keep throwing the ball over and over and over again. Or, he'll stand one foot away from the tv screen and swing that controller. I have to remind him to step back before you crash into the screen. When the prompt comes up "Play Again?" he immediately pushes the Yes button. I can't take the controller away from him without a fight. Did you know that Wii bowling has only one tune that plays over and over and over again? I'm dreaming about it at night. I find myself humming the tune on my way to work.
     
    I believe that because of the stroke my husband's brain is "re-wiring" itself to get back to normal. A consequence of this is that he has some very obsessive/compulsive behaviour that occurs. Sometimes it's very difficult for me to deal with this and other times I find the humor in the situation. Because of the game we can still bowl, play tennis and ping-pong and do some exercising together. But, because of his stroke we aren't doing any hiking, biking and real bowling. Not now anyway. I really look forward to the future when we can go to a bowling alley and get away from this game and the tv. But for now I keep trying to beat him. Maybe someday I will.
     
     
  5. julskovac
    My husband had a hemmorage aneurysm on January 24, 2011. He spent 3 weeks in the hospital followed by 10 weeks in two separate rehab facilities. I spent nearly every day of that time visiting him while dealing with my full time work schedule and taking care of our home. It seemed so hard and time consuming but everyone said I'm a "rock" and his best inspiration. Finally the day came when he could come home. Easter Sunday of all days - the resurection! I took 2 weeks off from work to be with him. It was so exciting. Little did I know that it would be so hard. When he was in the hospital there were nurses and therapists to take care of his every need. Not that he needs that much. He's made a great recovery. He came home with a walker and a cane and hasn't used the cane once. He can go up and down the stairs (one of my biggest concerns). He makes his own breakfast though sometimes it comes out a bit more overcooked than he would like.
     
    Up until this point it has been so surreal. Even the first week was just a crazy adjustment with in-home therapists coming and going and trying to determine some kind of schedule. I was so very exhausted. But, this week after all this time I think reality has finally hit me. You see, he's not the same person I married. He was always the loud, opinionated person who had all the answers. He was intense in his interest in life. Everything was an issue, a challenge and very, very exciting. We actually work for the same company so I always seem him. At work people say we're the "cutest couple" because we're together all the time. On weekends we hike and had the greatest conversations about everyone and everything.
     
    Now that seems to be gone. Maybe some of it will come back but I'm fairly certain that all of it will not. And this second week I just can't stop crying. I cry when he just sits in front of the tv for hours on end. I cry when, no matter what I try, he WILL NOT pick up the guitar and play it though he is an absolutely fantastic jazz guitarist. I cry when my son is home and he just looks at my husband wondering where the old dad is. I actually broke down and sobbed in front of him and asked him when he'll start caring again. Yesterday we went out for a drive and short walk and then stopped at Yvonne's restaurant for lunch. He walked in slowly with his cane and sat down with some unease. We didn't talk too much but we did have a conversation. The waitress and I waited while he made up his mind what to eat. It was very nice, really. We wrapped the rest of my meal to take home and went to the car. As he was getting in an older gentleman came walking out and said "excuse me dearie, I think you forgot your leftovers". I started to apologize but he said "not a problem you have alot of other things to worry about". Well, I got into the car and broke down again.
     
    Tomorrow I go back to work. I have a whole new set of worries ahead of me. My son is planning on staying home most of the summer to help out and then he goes back to Brooklyn where he has an apartment and is planning on starting school again. It will be ok. I just miss him so very much.