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Thread: caregiver to dh

  1. #1
    Junior Member
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    Dec 2003
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    Woodstock,GA USA
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    caregiver to dh

    I met my husband back in 1994. I had just finished CNA/HHA training. He was my first real case, a live in situation. Although, at 24, I was real nervous caring for someone in their home with no help. Jerry taught me every thing I needed to know, things I didn't learn in school. He was a angry, withdrawn person. He tells me it was love at first sight. I believe it didn't take long for me, although I was trying to keep it strictly professional. But that didn't last long. We ended up getting married in July of '97. Things haven't always been rosy though. We have had our blow ups. But one thing that finally did soften him up was the kitten I got for him. The only problem with that is after he got the kitten back from the vet, it ran under his chair and he ran over it. He crushed it's spleen and had to have it put to sleep. That really crushed Jerry, so I quickly replaced the kitten with another. Cats have been the best therapy for him. He finally had something to love that would love him back unconditionaly. Of course, now we have several cats and one dog. We have no children yet, so our animals are our kids. I forgot to tell you that Jerry is a C7 Quad, since a GSW on 4/3/85.
    I've done a good job of keeping him healthy. Meaning no pressure sores, hospital stays or anything major. That is until this terrible year. Between Mar and Apr he had 3 surgeries. The first to replace and bac pump and the cath. 2 wks later, the pump wasn't working so they took him back to surgery to try to access the port, but couldn't open it. A wk later a different dr went back in to make sure pump was ok, and cath in proper place. Lets just say that we've had a whole yr of overdoses and underdoses, and a bunch of hospital stays. No one seems to know whats wrong. I've also been trying to go back to school for a yr and working ft. My mother-in-law (mil), was living with us a the time of surgery, but left on Easter because she couldn't handle Jerry anymore. Just the wk before she was all by herself at home while we were at the hospital. Well, that left me hi and dry with no help at all. I had to leave him at home while I worked and went to school 2 nights a wk. This normally worked ok, except when he had over doses, then my mom would be great about coming over to ck on him for me. My mil came back in Sept, and has been a big help to me. I was accepted into the LPN program this fall full time, and was working ft. This physically was draining on me. When school was out Dec 18th, I asked my employers for a leave of absence. At first they were cool about it. Then they were saying it was unfair to the other employees for me to have both holidays off. I have since decided to quit my job, because my dh is first in my life. I need to take care of him, also be his advocate against these dr. I believe that my employer doesn't understand at all what we are going thru right now. No one really knows. As a matter of fact, while at my parents for
    Christmas Eve a sister in law acted as if I was unaware of my husband freezing. You see he has been having unexplained sweats, which in turn cause him to freeze. My sister in law said, Jerry is freezing, is he coming down with the flu? I said no, that he has been having this problem for a whole yr and no one knows what is causing it. I then went in the rm he was at, felt his shirt and proceded in changing it because it was soaking wet with sweat. Oh well, I'm on a venting mode tonite, please forgive me. Paula

  2. #2
    Hi, Paula, and welcome - I'm glad you've found us, although hate the reasons you've had to.

    What an incredible story you have - and a beautiful one! I smiled when you talked about the kittens, as we just got a new little guy, and he's brought a real lightness into the house.

    Will your husband's insurance/medicaid, whatever pay for any kind of aide help , so that you could perhaps work at least part time?

    Where is he getting his health care? Are the docs communicating with Medtronic re the pump malfunctions? Is he having AD with the sweats? Have you taken his blood pressure when he gets them? Sorry for all the questions, don't mean to sound like a drill sargent!

    Please feel at home here, and you are most welcome to 'vent' whenever you need to! (We also like happy stories!)

    _____________
    Tough times don't last - tough people do.

  3. #3
    Junior Member
    Join Date
    Dec 2003
    Location
    Woodstock,GA USA
    Posts
    23
    Dh health insurance is Kaiser Senior Advantage, this is thru Medicare. He could be approved for Medicaid to help pay some if I didn't make so much money. I am unsure about the paying of help. Right now my mil does live with us and can help out some. But of course she really doesn't know how to deal with Jerry. The pain clinic is dealing with Medtronic, we had a meeting with them at the middle of Dec. Medtronic is suppose to be contacting some doc in Indan.that specializes in these kind of pump problems. We asked the pain doc about it today, he acted as if he didn't know what we were talking about. Forgive me, but I get remember what AD is. But as far as his bp it runs higher during the sweats and spasms. 130/70 He's normally 70/50 or some where in that area. No fever though.

  4. #4
    Hi, Paula,

    Push the pain doc to get some results - it seems part of dealing with SCI is having to get obnoxious when dealing with health care professionals! You can contact Medtronic directly through their website - Medtronic

    Autonomic Dysreflexia (AD) is a condition that people with higher level injuries have. It is brought on by any noxious stimuli to the body below the level of injury; can be something as simple as a clogged catheter, or constipation, or ingrown toenail; can also be caused by more serious conditions like gallstones or appendicitis. AD manifests by sharp increases in blood pressure, pounding headache, sweating, or flushing of the face. From the blood pressure levels you stated below during these episodes of sweating, he most definitely is having an episode of autonomic dysreflexia. AD is a very serious condition, and should be looked into immediately.

    The most common causes are bladder - clogged/kinked cath, bladder spasms; bowel - usually constipation or impaction; other, including pressure sores, toenail problems, or internal problems as I said above, like gallstones or kidney stones or appendicitis.

    I'd recommend first a visit to his SCI doc, or the physiatrist, who may be able to point you in the right direction. Something is causing these sweats, and you really do need to get to the bottom of it.

    Hope this helps.

    _____________
    Tough times don't last - tough people do.

  5. #5
    Junior Member
    Join Date
    Dec 2003
    Location
    Woodstock,GA USA
    Posts
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    After posting I realized what AD was. My dh calls it something else. Anyhow, he sometimes has it.

  6. #6
    Junior Member
    Join Date
    Dec 2003
    Location
    Woodstock,GA USA
    Posts
    23
    Hi, it's me again. This time my vent is a little different. You see my mother-in-law lives with us. The problem with her is that she really didn't raise her son, and when things get tough now she wants to run. She can't handle responsibilities. I went off with my husband today, when we arrived home (I was acting like a baby) and got a little upset because she ck'd the mail. That's the only thing she's good at. I made a comment and my husband accused me of hurting her feelings. She claimed to me that her feelings weren't hurt, but she's very good at lying to me. This made me mad, because my husband is soooo afraid I'm going to hurt her feelings and then she'll leave. I get very tired of walking on egg shells in my own home because I might hurt her feelings. Another thing is since I haven't been working, Jerry's been depressed for some time now, so he has been in bed. But my m-i-l has to be told what to do all the time. It's like she has no mind at all, or she is just plain lazy. I have to ask her to simply sweep my floors or wash the dishes. Today I worked out in my yard and all she did was stay in her room. And I wonder why my dh has depression problems, I believe he has inherited this from her. Well, depressed or not I have to go on.
    For instance, while I was still working and attending school, I couldn't depend on her to have any supper fixed for us. She always wanted to eat out. So, when I came home and started fixing a meal she'd do the unthinkable. She would come ask me if she could do anything to help. This angered me, since she had been home all day long, while I'd been gone since 4:30am and didn't get home until 8pm. Okay, I've now vented. Thanks for listening. Paula

  7. #7
    Autonomic dysreflexia is sometimes also called hyperreflexia, although this is considered an outdated term. You and he need to be experts in this, as most health care professionals know nothing about it. It can be life-threatening, and what causes it can also be life-threatening.

    I would recommend downloading the consumer guide to AD management available from the Consoritum for Spinal Cord Medicine (available for $5 download fee at: AD Guidelines

    (KLD)

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