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Nurse Maid - Not His Wife!!!!!!!!!!!!!!!!!

Kj mcmeekin


Looking back through my own blog - I can't believe that it has been since January since I have been on the site. THIS HAS BEEN THE BIGGEST MISTAKE I COULD HAVE MADE!!!!!!!!!!!!!!!!


My stress level has blown the top off the meter. Chris has really become a handful. I feel like I am taking care of a 52 year old baby.


I absoultely have no time for myself - I am stressed to the max.


The past 7 days have been the worst. Last Thursday when Chris had his routine doctors appt. - he had a low grade fever. Well this fever lasted for 7 days. At least once a month he is diagnosed with a bladder infection. It is just constant antibiotics. This past weekend he has done nothing but sleep. Monday we spent the whole day into the evening in the ER. He still had the fever, complaining of severe back pain, internal chills along with the sleeping and at times his speech was slurred. He had every test possible that day and everthing came back negative. At this point probably something viral - so the doctor put him on 5 days of prednisone to try to boost his system.


Lately he no longer asks for the urinal he just keeps wetting himself. I feel that I need to put him on a bladder program - but what really bothers me is that he knows when he has to go - it seems like he is doing this for attention. Tonight I needed to run to the store - I was only gone for about 45minutes and by the time I got back he had soaked through an incontience pad, brief, his shorts - the pad on his recliner and the recliner itself had gotten wet. I asked him why he did this and he starts giving me every reason under the sun. We continued to talk about this and he admitted to me that he has control of his bladder and that he shouldn't have done what he did. He also is doing the same with his bowels. It seems to me that he is getting mad at me when I need to run errands or have work that needs to get done and he is not getting all the attention. I finally told him tonight that I was no longer going to deal with this and that I was going to buy him rubber pants to wear. I also explained to him the amount of extra work and wash it makes for me. He now tells me that we will have to hire a nurse to come take care of him , when he wets himself the nurse can just take care of it. I told him that this will never happen because we cannot afford to hire a nurse. I also reminded him that this is the what he used to do in the nursing home that he would be wet for hours and that he is starting to smell like urine and at his young age I didn't think he wanted to smell like that. Also I again explained to him how bad this is for his skin.


In all areas Chris has gotten to the point where he wants total attention. I feel like he knows how far he is constantly pushing me and when I get frustrated and angry it is almost like he feeds on it. He's gettting attention - but NEGATIVE attention. He doesn't seem to mind what type of attention just so he gets it.


I think what I need to do now is come up with a different plan. I am spending more and more time attending to his needs and less and less time attending to my own. I need to revamp the activities of his day - starting from the time he gets out of bed in the morning to how long I let him drink coffee after breakfast to end with an earlier bedtime so that I can have the time I need.


I almost feel like I just brought him home from the nursing home and we are back at the beginning.


I have lately been feeling like maybe I should have left him in the nursing home so that the professionals could have dealt with all this. I feel like a nurse maid and not his wife.


The worst thing I did was not stay in touch with my "support group." Believe me - this is not a job you can do all by yourself.


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So sorry you're having to deal with all these issues. I understand how frustrating it gets when you just can't keep up with it all. I've just recently decided that I need to start training someone to take care of Gary so that I can get a break - haven't had a day off since early Feb. 2005, and approaching the "burnout" stage. I had to make adjustments in the budget to allow for another couple days of 2 hr. breaks for me, and this time I'm having an agency come in so that they can get used to Gary's needs for when I take an overnight break somewhere soon (I hope).


It's always easy for others to say "take care of yourself" but not as easy to do when you're up to your eyeballs in the caregiving for someone with the emotional lability that Chris and Gary have. Yesterday when I had to leave to get groceries, I got the pout face and whimper from Gary, and I reminded him again "get over it" because I have to get groceries, and I have to run errands and I can't always be dragging him and a wheelchair around to do it. We have an excellent caregiver who sits with him for 2.5 hrs. on Mon. and Wed. afternoons. Since she's not available mornings or for long-term care if I need a whole day or weekend off, I've decided to try an agency. I'm currently paying $400/month for his care and this will now double the cost, but as opposed to me "losing it," and him going to a nursing home, which will cost over $5000/month, I'm hoping it's worth it in the long run to keep my sanity.





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Please consider that Chris is possibly experiencing vascular dementia. Bill was prescribed Aricept, then Namenda was added. This has helped him tremendously.


The one thing to remember in all this is that to care for our husband we need to know HOW to do so. Maybe your husband needs the 24 hour care a nursing faciity offers. You and your husband's physician may need to make that decision.


I now self-care is the most important thing we can do for ourself and I'm not good at that, with time though I've finally come to the point where whether my husband "likes it or not" I realize the importance of that self care in caring for his needs.


I've said it before - there may come a time when the best way I can care for his needs is to allow for more intensive care.


Good luck and God bless,

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I've missed your comments and blog and sorry to hear this awful experience you are under going. Wish I had a magic solution or suggestion of help. Big help boils down to big bucks any way you look at it as Sarah as pointed out.


Being the survivor, I can't help but wonder how my wife (caregiver) will manage the same situation. No one is above it happening one day even if it's not associated with the stroke.


My hope is some way, some how you can find a means of solving the current problem where you can get relief from being stressed out completely beyond repair. Something has to give and change as a matter of your survival and sanity. You can not continue down this road without becoming a total wreck.


You are at a point where help MUST be summoned at some PRICE for you to have a life. By all means stay in touch with stroke net, we are here for virtual support however we can.

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Welcome back, Kim.


Have you considered adult daycare for a couple afternoons a week? If your husband truly is using the bladder control to 'blackmail' or 'punish you' for leaving him alone, you might have to consider other options. He may actually be afraid to be alone. Or Ann may be right about looking into the vascular dementia possibility. Just because your husband "admits" that he has bladder control that doesn't mean he actually does. He may just be saying that like a little kid that will admit anything just to get his mom to stop the lecture. Either way, it's got to be very frustrating for you. Take a deep breath and start mourning the lose of the wife within because, unfortunately, she is probably gone forever. Accepting that fact can make it easier to find the nurse within.



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