julskovac

Leah, What a difficult time for you. I am saying a prayer for you and your husband right now and will continue to do so every day. Julie

Thank you all for the support. Debbie, we are definitely neighbors. Kettletown State Park is one of our favorite places to go and we've hiked there so many times. Ian would take photographs of the river that runs through the woods there. I'm definitely going to try to get us back down there if only for a short time.

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/

Sue, I'm still pretty much a newbie on this site but I've read many of your blogs and feel that I know you. You are such a very strong person and I pray that once Ray comes home things get better. I'm finally coming to my own realization that there are some things that we do because we have no other choice. Taking care of a sick loved one is one of those things. The battle is so difficult but hopefully the reward of knowing that the one you care for is somehow appreciating all that you do is what keeps us going. You are one of the people that has pointed this out to me. Thank you Julie

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.

Wow, I'm a caregiver and was just venting in my own blog post about how my husband doesn't have motivation and initiative. Then I read your post. You have helped me so much to understand what my husband must be going through. Don't get discouraged! It's very hard for people that aren't going through this to understand how difficult it must be. Everyone is usually wrapped up in their own problems. I agree with Ethyl17 - refocus on yourself and your family. I wish you all the luck and thanks for setting me straight.

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!