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Thread: What can care-receivers do to prevent caregiver burnout?

  1. #1

    What can care-receivers do to prevent caregiver burnout?

    As a care-receiver, I would like to hear from the caregiver community, what can we do to help prevent your "burnout"? What can we do to keep a husband-wife relationship from turning into a patient-nurse relationship? Things that may seem obvious to you might not occur to your SCI partner, we do tend to become rather self-absorbed in our condition.

    Your health, physical, mental, and emotional, are completely intertwined with ours, and we need to be as concerned about you as you are about us.

    So what can we do to help? A change in attitude? More help around the house (within our capabilities)? More interaction with the children? More effort to cultivate common interests between us? Just an occasional "thank you" and "I love you"? Be honest please, and spell it out for us.

    Thank you.

  2. #2
    Senior Member kate's Avatar
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    Wow.

    I can't remember anyone ever asking that question before. The question itself goes a long way toward the answer--I mean that many of us want nothing more than to know that our well-being matters to you as much as yours does to us.

    In our situation, where active 24/7 caregiving-carereceiving was of limited duration, I can say that the smallest gesture on his part was all I needed. Tell me a joke. Listen. Ask how I am. You don't need to be able-bodied to do any of that--just willing.

    My dad died suddenly while my husband was still in rehab, and there was a moment when I just desperately wanted a tiny signal from him that he would have helped me if he could. I didn't get it that day, and I can tell you that was a very rough thing to take. Notice, you know, I didn't even need him to actually help me figure out how to get myself to a funeral halfway across the country -- just to somehow let me know that he'd like to.

    Anyway, that's what I have at the moment, and thanks for asking.

  3. #3
    Moderator Obieone's Avatar
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    Yes I would agree with everything Kate said with very little to add except this .... truly .. I don't know whether burnout is preventable if the caregiver hasn't reached the point in the relationship where they recognize the importance of caring for themselves as well ..... that it is not a selfish act but a necessary one. It's a process and comes on a different timeline for everyone since there are so many different factors at play .... level of injury, finances, family supports/non-supports and probably most importantly the state of the relationship pre sci. As well a parent/child relationship is clearly very different than a spousal one with each its own set of dynamics and each requiring a very different kind of nurturing!

    Even after all these years every now and then I still find myself completely immersed in my own emotional pain over what has happened to "us" for a period of time and there is very little anyone can do to help me with this ..... I simply allow myself to feel it and then move on and if i think I have been stuck there too long I find someone to talk to about it (usually here ) .. I am very aware of my own emotional health now because I clearly understand that if I don't how can I possibly be of any value to Bill or the rest of my family .... and yes thanks for asking the question ....

    Obieone
    ~ Be the change you wish to see in the world ~ Mahatma Gandi


    " calling all Angels ...... calling all Angels ....walk me through this one .. don't leave me alone .... calling all Angels .... calling all Angels .... we're tryin' and we're hopin' cause we're not sure how ....... this .... goes ..."
    Jane Siberry

  4. #4
    I would make the following suggestions from many years of working with families, as well as many years of teaching a caregivers' course (and as a family caregiver myself):

    * Avoid having a spouse be your sole caregiver if at all possible. Hire some part-time help (at least) to do some of your care. Give the spouse caregiver at least one day "off" each week (arrange other caregivers) so that they can go to lunch with friends, play tennis with their sister, or do other fun things that are not related to caregiving, and so that they don't have to worry about you if they are not with you 24/7.

    * Say "thank you" a lot. Just because your caregiver is a family member, or is paid to care for you, don't just take them for granted. Thank you goes a long way (and so does "please").

    * Celebrate their birthdays, graduations, and other accomplishments as you would your own. Be generous with perks. Even a small gift or card of thank you goes a long way. If you privately pay, don't forget a Christmas or birthday bonus, even if it is small.

    * Plan on regular respite for your caregiver. Arrange other care (another family caregiver, agency or short term PCA, a stay in a local rehab center or nursing home, etc. etc.) for 1-2 weeks a year so your caregiver can get away, take a vacation, visit their own family, or just kick back for a while. There are many options for doing this. For example, I travel with my parents and provide my mother's care on these trips so my mother's attendant can stay home, sleep in, and just do some fun things for a few weeks a year. And yes, we do pay her during these breaks.

    * Do the things for youself that you can do. This includes both your personal care and taking care of the household. You may not be able to fix the toilet anymore, but you can pay bills (on-line, for example), supervise children, or perhaps run some of the errands. No one with SCI is "totally dependent".

    * Make your caregiver's work as easy as possible. Get organized and group your requests so that they can be met quickly and efficiently. Simplify care as much as possible. Organize your space so that you can be left alone once you are up in your chair and your caregiver does not have to be with you 24/7. Use a lift instead of doing manual transfers. Remodel bathrooms, etc. if you can afford it. Consider getting a high/low adjustable bed to make caregiving easier on your caregiver's back.

    * For paid caregivers, have a weekly "meeting" to talk about and work out conflicts, issues, etc. When you first hire someone, do this daily. Don't skip it if everything is going OK...use that time to give praise for what is going well too. Don't let tension or unhappiness with the care provider fester without getting it hashed out. Communicate on an adult-adult assertive level during these discussions.

    (KLD)

  5. #5
    Thanks so much for your responses. I am a T-level injury so I can do many things by myself, but I've had a lot of secondary problems (broken leg, DVT, HO) so I'm not independent. Already I see occasional bouts of frustration and depression in my wife, and it's only been six months. I'm considering jotting some of your responses onto a cheat-sheet and sliding it under my cushion! It's just so easy to get wrapped up in my own pain and frustration that I don't see the other side of things, but if my wife is not happy, I'm not happy and it ends up a downward spiral.

  6. #6
    Senior Member kate's Avatar
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    Quote Originally Posted by Zero
    . . . if my wife is not happy, I'm not happy and it ends up a downward spiral.
    You're smart, and your wife is lucky to have you.

    Adjusting in a marriage after sci takes a long time, and it can be impossible when things are still unstable and changing--like in the first couple of years. Be easy with each other and know that there will be a day when you're glad you stuck together.

    Small plug . . . I wrote a book about the first year and what it was like for our family. You can get it at http://www.lulu.com/content/352048 if you're interested.

  7. #7
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    I know this is an old thread but wow Lazlo you are a heck of a guy to care so much for your wife's well being.
    I am in the middle of the caregiver burnout myself and have learned alot from your thread.

  8. #8
    Quote Originally Posted by kate View Post
    You're smart, and your wife is lucky to have you.

    Adjusting in a marriage after sci takes a long time, and it can be impossible when things are still unstable and changing--like in the first couple of years. Be easy with each other and know that there will be a day when you're glad you stuck together.

    Small plug . . . I wrote a book about the first year and what it was like for our family. You can get it at http://www.lulu.com/content/352048 if you're interested.
    I became a t-6 ASIA-A through a snowboarding accident 3 yrs ago... I think I'll get this book for my wife, who so far has stuck with me.

  9. #9
    Senior Member Van Quad's Avatar
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    Quote Originally Posted by SCI-Nurse View Post
    * Say "thank you" a lot. Just because your caregiver is a family member, or is paid to care for you, don't just take them for granted. Thank you goes a long way (and so does "please").
    (KLD)
    Great guidelines KLD! Especially the one above.

    I've been making a conscious effort to do this as much as possible. Especially when a care worker is leaving my front door.

  10. #10
    As the husband/caretaker for my wife (C6/7) for the past almost 5 years, I too thank you for just asking the question!

    We as care takers hurt too sometimes. Your hurt is just bigger, but knowing that you understand that we can be in pain also, is really huge. For the care taker, knowing you understand our pain helps us keep helping you.

    Kate, I need to get your book :-)

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