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A typical day in this caregivers life



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!




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read your blog for the first time. thank you for sharing. i am a survivor. i too had 2 trips to er post stroke for low blood pressure. Iwas dehydrated, i live in arizona(aka center of the sun),so fluids are a must, especially with all the darn meds i have to take. so make sure your hubby is hydrated.


i also resembled the non-showering comments. when i came home from hospital, it was like pulling teeth to get me to bathe. i hated it. i think it was because i was scared. i'm good now, walking well. my left side deficit is improving every day. but those first showers were such a reminder of what the stroke had taken from me, i made it my goal to not take them and make my mother miserable. i'm 41, my 73 year old parents are my caregivers. i have recovered to point where i am driving and am back to work part-time. so i know how blessed i am. good luck with your hubby & his recovery. i wish you all the best

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hey Julie:


I am surprised to read about your hubby's noncooperation & lack of motivation. is he on any antidepressants? after my stroke n the morning I used to feel like why get up since I don't have any place to go to anyways, and had inhome help. Once I felt better & decided to take over duties of our household, I felt much better about myself & my life. having routine in life helps big time.



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Hi Julie. I too am surprised that he does not want to do some of the things mentioned. He has goals set and can do most things. Usually, survivors are depressed that they cannot walk, use their hand or arm, etc. Larry does not have a problem with showers but he always had to be pushed to do exercises at home. He was very cooperative with his outpatient therapists. I cannot get him to read or use the computer and I am just getting him to go out to eat and walk in the park. His taste for a lot of foods have changed. He does eat at meal time but doesn't gain any weight back. Strokes have so many different affects. I admire you for working and being a caregiver with all this going on. Maybe the doctor can suggest something and hopefully, things will change as more time goes by. Take care of yourself too.


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Julie: its funny. I am rereading your blog thinking back to those early months with Bruce and struggle to get his medications regulated, get into a routine that works and then one year later, Bruce quits. I agree with dbrez in that you must be certain he is taking in enough fluids. Chances are with all the ER runs, his Electrolytes were checked and rechecked. But if he was on a diuretic for his heart, dehydration may just be one of the issues. If sugar is a problem, try the Crystal Lites=many flavors and no sugar. Another issue, again fluid volume, is what is medically termed "Orthostatic Hypotension". Never mind that, it is moving or changing positions too fast for the body fluids to adjust. Solution for that, until Cardio gets to the bottom of it, is to make all position changes slowly, allowing time between each move. Move to sitting position at side of bed, rest; stand rest, recover then move to WC.


I can't imagine having to do this and work full time, not to mention that you have new duties and responsibilities and kisses and hugs to your wonderful son.


As Julie mentioned, we all struggle with motivation. Personally I am still trying to find something, anything that Bruce will grab and go for. I know everything they do hurts, is scary and is very difficult. I just don't get the I quit thing. Bruce is a man who never gave up. Now I have someone who wants to watch TV all day. He is not even motivated enough to want to eliminate-just sits and goes in his pants. Doctor explained to him that he would have to work very hard to get that back. That part of his brain no longer recognizes the need to go, but with hard work and scheduling, he can get most of it back.


Still, honey, we push, cajole, bribe, threaten. Whatever works. There will be no dinner, until you toilet, unless, of course, you want to go make it yourself. That one always works. Thing is, we get no support from the medical community. Everything takes time, test-retest, consult. And all along that road is a caregiver who is burning out. Just hang in as best you can. Take it one step at a time and if he truly argues and you are too tired, just let it go. Make him stand in the Bathroom, do a good wash up with soap and water, clean night clothes and let it go. Its funny in that it takes me less time to shower Bruce than do the BR wash up and we have a step in tub with a bench, so what could be easier? There's no answer and you are too tired to fight it out. Hopefully the docs will have some solid answers soon and you, some relief. Hugs and prayers, Debbie

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