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Thread: Caregiver nightmares?

  1. #1

    Caregiver nightmares?

    As some of you know, I'm not an SCI patient, just the moderator of the pain forum here who also just happens to have recently undergone a couple of surgeries. But I have a question about an issue that I feel must arise in SCI care as well.

    My surgical wound was left open and requires dressing changes 2x daily. This task, of course, falls to my wife as the insurance company will only authorize a handful of home care visits. I had a few visits over the weekend, yesterday morning my wife changed the dressing under supervision of the nurse, and as of last night my wife was on her own. My wife is great about her willingness to help with this, and she does as acceptable job as anyone could do with this (though they always hurt like a %#@%!!).

    During the night my wife admitted to me that she's having nightmares from doing these dressing changes. I hate to lay this sort of thing on her, but I really feel stuck on finding any othe choices. I have a neihgbor who is a nurse and offered to help with this when I came home, but I spoke to her on the phone last night and she is laid up with nasty ear and respiratory infections.

    Do insurance companies always ignore the human factor??? I can't think how to deal with this and I feel stuck between deep wound infection, and causing emotional and sleep problems for my already stressed out and seriously fatigued wife. Do I have to insist that my wife just work through the nightmares?

    David Berg

  2. #2
    Senior Member martha's Avatar
    Join Date
    Jul 2001
    Texas hallelujah!


    David, I'm so sorry to hear of your problems. In my experience, YES the insurance companies totally ignore the human factor. They ignore the fact that caregivers need sleep, and that some tasks take a toll on you emotionally as well as physically. They ignore the fact that caregivers have no outlet for fatigue and exhaustion and that this is a lifetime job rather than a short term one. Unfortunately, we don't all have the means to hire PCA's for our family members. This is a difficult task for your wife if you don't have means to employ someone to come in and do it. Prior to the SCI, I've had to do the same for my husband on several different occasions and it's as difficult as digistem and other SCI related caregiving roles. The only tiny bit of positive reinforcement I can offer is that at least it is a temporary situation and unlike caregiving for SCI, this will be over (hopefully) soon. Though you are in pain, try to be as kind and understanding as you possibly can with your wife during this period. Good luck.


  3. #3

    re - nightmares

    To Martha - You go, girl! What a great expression of the frustration we've all felt! I don't know what kind of insurance you have, but is there any way you can get maybe even temporary Medicaid? Try calling a home health nursing group, and talk to their supervisor; sometimes they can come up with some creative ideas to circumvent the system. I know of one couple, the husband was injured with SCI, and the wife was battling colon cancer herself, and wasn't in great shape; they didn't automatically qualify for Medicaid, but her doctor wrote a letter to the their insurance company stating the physical and emotional distress she was under; they not only got disability benefits for the wife so she didn't have to work AND care for her husband, but they got a temporary Medicaid to help with home nursing care. Is it worth a shot?

    To David - Don't know what your injury is - I guess it doesn't matter; any time we see a loved one in pain, or with some disfigurement, it's a traumatic experience. I have nightmares, too; that my son has fallen out of his chair and can't holler to me for help; that he is having another devastating seizure (his first one put him in ICU and back on a vent for a week); etc. They used to really freak me out and I woke up with cold sweats. But I started looking at the nightmares as sort of a release valve for all the stress and emotion I was holding inside; now, while I certainly don't welcome them, they don't do as much emotional damage as they used to. I can sort of let them pass through.

    Martha and David, and anyone else - It does get better; I never thought I would be able to say that, but it's true. Remember that the physical exhaustion accelerates the depression, stress, coping abilities, etc. Take a nap - it's necessary; I used to even lie down on my son's bed and snooze while he was in his chair, on the computer or watching TV - nothing like a boring football game to catch some Zzzz's!

    I have a quote from Mother Teresa on my wall - "I don't God won't give me more than I can handle - I just wish he wouldn't trust me so much!"

    God bless.

  4. #4

    No, my specific surgery probably doesn't matter so much here since the issue I'm bringing up is fairly generic. But to give some context, what I had done last week was laproscopic removal of my gall bladder and an umbilical hernia repair, plus a redo of the hernia when the bowel poked through a couple of days later and then endoscopy to deal with a stone in the common bile duct of my liver. I think the hernia repair and redo are the main source of my problems that I'm addressing here.

    Yes, I do recognize the blessing that my problem is a fairly temporary one that will pass soon, whereas everyone else here is dealing with lifetime problems associated with their spinal injuries. This wound should be healed within a few months and then life will go on as normal for me.

    Still, I hate to be responsible for this sort of problem for my wife. I am already following your advice to be as kind and as grateful to her as possible. I'm sure to tell her how much I appreciate her and everything she's doing for me. She lost a lot of sleep last week while I was in the hospital, and spent most of a couple of night with me when the nursing staff was spread a little too thin. There were a handful of times when it would take over an hour to get somebody in the room after paging for a nurse, and a couple of times when the call button simply didn't function until someone could come and fiddle with it.

    I'm very lucky to have my wife and I love her deeply. She's been a great support through all of this and I worry about the toll it's taking on her life. On top of all this, we have 4 kids that live at home and she's enrolled in her final semester of her degree. She pretty well missed all of her classes last week, but her professors are pretty understanding. Think she has her hands full?

    Oh yes, I should mention that I already have Medicaid as well as private insurance. I received Medicaid while I went back to school and for now I'm on some version of extended coverage through at least next summer. The problem my home health agency is having is getting a response on a guarantee of coverage. Medicaid isn't usually known for their rapid response, but hopefully this will come through fairly quickly. I go to the doc tommorrow and I'm hoping that the dressing changes can go to just once per day, and that should make things a little easier to deal with. I've also been told be someone to check into having a doctor close the wound, rather than leaving it open to heal. There's different schools of thought on this matter; one that it's sloppy, primitive medicine to leave the wound open to heal, and another it's the safest and best to leave it open. My friend tells me that plastic surgeons are the people most up-to-date on healing of surgical wounds, so I'm trying to figure out how to approach things from that angle.

    David Berg

    [This message was edited by David Berg on October 02, 2001 at 11:37 PM.]

  5. #5
    Join Date
    Jul 2001
    Central Illinois


    Hi David, Hello everyone,

    We are 10 months post-injury, and I still have nightmares. Early on, I was on my feet at the hospital 18 hours a day, and spent the rest of my time commuting, showering, and staring at the ceiling and rolling about. I actually slept less than a couple of hours each night. I would speed to the hosptial each morning praying that the even more awful things I had dreamed had not occurred.
    My DD's injury is incomplete, and she has recovered much function, but I still have nightmares. Mostly about the first two weeks post-injury, or that she wakes up totally paralysed again. But, my sleep patterns are nearly back to normal.


    M.Elston SCI Mom to 15YO incomplete L2-3

  6. #6


    I can relate to your wife's nightmares completely! My daughter's incision became infected in the hospital; there was an open wound about the size of a dime at the base of her incision. It was packed with gauze so it would heal from the inside out, and I had to learn to change this dressing. The first time the nurse showed me how to do this was the first time in my life that I almost fainted! The "hole" was about three inches deep, and seemed to be tunneling around in her back. Whew. But I got through it. It was much worse when, three months later, she came down with discitis [infection of the disc between the vertebrae] and I had to administer IV antibiotics at home. I would dream about those air bubbles in her tubing...scared me to death. But you just grit your teeth and go on. I think Marmalady is right: it's a release of all the stress and emotion we hold inside all day. Now, two years post, I still have the occasional dream of her car accident and our wait in the ER. I wake up thinking, "My God, I just dreamed that Bri was paralyzed!" and then I realize that it's true. None of that "It's just a dream" comfort, unfortunately. Tell your wife, from all of us, that we understand...and that it gets better!

  7. #7
    Senior Member TD's Avatar
    Join Date
    Aug 2001
    Phoenix, AZ, USA

    From a SCI's point of view

    Hi, David et al.

    After reading the support replies I decided to share our experience. My wife, too, had nightmares about my 20 days in ICU after my accident. She was in the vehicle with me when I was injured and walked away with soft tissue injuries while I was crushed. She still has occasional nightmares but after six years they have become less frequent. She also suffers from post-traumatic stress which our doctor treats with an anti-anxiety med.

    Your wife's reaction to your care is typical. I went through the same thing when I was a corpman (medic). You just can't see that sort of suffering and NOT be affected, especially if it is someone you love. Words of comfort, thanks, appreciation, and encouragement would be my Rx.

    I received a dose of what caregivers go through a year after my accident. My wife had to go through an emergency hysterectomy. For three weeks I became the caregiver...from my wheelchair. I changed dressings and cooked simple meals until she was back on her feet because her insurance would not cover home visits. We did find our local Area Agency on Aging helpful. They have CNAs and such who come to the home and help. Your doctor can write the letter that will get things started.

    "And so it begins."

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