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Thread: What's the arrangement? Care and your Sig Other

  1. #1

    What's the arrangement? Care and your Sig Other

    Hi everybody. This came up as a tangent in a different thread but I thought I'd get more answers here. What's the arrangement between SCI folk and significant others as far a care goes? Do they do the majority of care required (dress, undress, bathe, catheter, bowel programs, etc) or are many of you utilizing home help personnel for part time care?

    I'm fairly new to SCI (post-injury relationship) and am just curious how most people are handling this.

    Thanks for humoring me.

  2. #2
    Senior Member zillazangel's Avatar
    Join Date
    May 2004
    North Carolina, USA

    We are a bit unusual

    Our situation has changed over the years. When I first met Chad, he was highly independent (as much as he could be given no movement/sensation below nipple line). His parents came every weekend, and Chad employed a 24/7 attendant who lived with him M-F who took care of him, did all cooking and cleaning, drove him to work, drove to work to feed him, etc, etc.

    Then I came along.

    I started doing Chad's nighttime care because well.... having his PCA come in at 11 pm put a cramp in our love life - I could never wear cute lingerie because I'd just have to hop up and put on a robe, and god help me if I forgot to wake myself up before he came in .... or if we ummmmmm, lost track of time. We had a few close calls, so I started doing his nighttime cathing, BP, etc. At some point around this time, my son (age 3 at the time) and I moved in with him.

    Then I started doing his personal care from Friday PM to Monday AM so that we didn't have to have his parents come live with us every weekend. We finally had some alone time as a family without a third party ALWAYS there. Around this time, I started my own business and began working 100% from home and didn't have to be at an office at all. I did (do) everything sitting in my house, usually in my bed! (not that I don't work hard, only that I can sit where I'm most comfortable). At about the same time, Chad had to go on permanent disability because his health status was (is) such that he cannot work anymore, and can't be up in his chair every day even without major health issues rearing their heads.

    Then about a year later, we bought a new house and had it extensively modified for accessibility, including labor saving devices such as a ceiling lift (thanks to CC'ers suggestions). One month after we moved in (and before the mods were done), we had fire our PCA (long story). We had NO luck in finding a live-in or live-out PCA we trusted at all after several job ads, etc. So at that point, I took over doing ALL of Chad's care.

    It has now been 9 months since I have been doing 100% of Chad's care and we just passed our 1 year anniversary mark (been togehter 2.5 years). It is very, very unusual for a spouse to do 100% of care, and I won't say it is easy by any stretch. There are days that I am so exhausted I think that I cannot move anohter step ... but I HAVE to, I have zero choice. It becomes a huge issue when I'm ill - I had pneumonia at Christmas for example - and we have virtually no back-up system, although not for lack of trying to build one. I recently got extremely ill while I was on a business trip - chad was with me - and I ended up in the hospital while we were out of town. My dad ended up having to fly up to the city we were in and drive us both home as I was far too ill to drive, but I had NO CHOICE!

    On the other hand, I love caring for him. I'd say it's about 20% annoyance/too hard and 80% enjoyable. Enjoyable? Yes. One of the ways I love him is to take care of him physically. I shower him and make sure that his ears are scrubbed out just the right way, I brush his teeth for seemingly 3 hours because he likes super clean teeth! I cath him and get satisfaction that I made him feel better. I scratch his head, wipe his nose, wipe crust out of his eyes, and it's just not a big deal. It makes me feel good that he knows I love him that much. And I know with certainty if the roles were reversed he would do the same for me.

    Do I recommended being a 100% caregiver and 100% spouse? Actually, in general, I don't. But for us it works, at least for now, and when it doesn't work we will make a change. I know that you will get lots of posts saying never to do it, it will ruin your marriage - and they are right for probably 98% of couples. But we're in the 2% that it works due to our highly unusual circumstances - I work exclusively from home and I control my hours (I can work at 1 am or 1 pm, my choice), Chad does not get up every day, and we are both willing to laugh at ourselves sometimes and I am able to yell "UNCLE" when I've just had too much. Chad is incredibly supportive and is thankful for the care I give, he has never - and I mean never - complained about how I take care of him. He's a keeper. I'm guessing he'd say I'm a keeper too. We were made for each other. All thakns to the yahoo personal ads, lol!

    Sorry for the book.

    Last edited by zillazangel; 06-08-2006 at 05:27 PM.
    Wife of Chad (C4/5 since 1988), mom of a great teenager

  3. #3
    For most, it works out better to have an outsider doing daily care, while the partner should know how to do stuff for the 'just in case' scenarios. There can be issues on both sides when one person is snapping on gloves and getting the lube out regularly. And you have to sober enough at the end of every day to transfer safely . ROM on the other hand can be enjoyable. Both people have to be secure in themselves to be able to switch gears from caregiver/givee to partners. If you can't put aside anger or even annoyance easily it won't work. Would you want someone who's mad at you washing your face and putting you in bed?

  4. #4
    My mother has MS and needs assistance with just about everything. My dad was doing her transfers, helping her dress, some help with bathing, and also doing all the housework and cooking up until about 6 years ago. My mother was able to do her own intermittent cath and bowel care at that time. He never was comfortable helping with this. They had already put in a roll-in shower and a ceiling track lift at this time. He was 77 at the time, and it was a big strain on him. He already had a bad back, was depressed, and very irritable. I tried to go up at least once a month for a weekend, but it is 120 miles from me, and difficult to get away too much.

    After my mother fell and broke both femurs while on a vacation, and had to spend 6 weeks in a nursing home, my sister and I had a pow-wow with them and told them that after all this time of trying to get them to hire a part-time PCA that this was way was my mother getting out of the nursing home (non-weight bearing still) unless they could use a PCA. We helped them hire two part time PCAs and my mother got to go home. Since then she has lost the ability to cath herself and do her own bowel care. Their PCA now lives in, but also has another job, so is not there all the time. My dad still does the cooking and housework, and sometimes does transfers but the PCA does bowel and bladder care, dressing, and bathing, and gets my mother in/out of bed, and does her ROM. My dad is not so stressed, and my mother loves her PCA.

    This works well for them. In my work, I have seen very few times where a spouse can take on full-time caregiving (esp. including bowel and bladder care) and also remain a lover and spouse in the way that most people mean. Often it turns into a roommate/PCA arrangement. If you can swing it, that it OK, although all the research on family caregivers indicate that it shortens your life and puts your health in jeapordy too. If you can at all afford it, get some part-time help at least. You will be a more rested, more fun spouse to be with.


  5. #5
    Junior Member
    Join Date
    Aug 2004
    I am posting under my hubbys screen name. zillazangel, I give you a lot of credit, doing it all is really a lot. My husband is a c4/5- 3 years post injury. Everyone told me to get help, the divorce rate in the U.S. is already at like 50% for SCI I've been told it's more like 75-80% because of the additional stress etc. Anyhow, we had been married 13 years pre SCI and we are closer than ever now. We don't really have money for a PCA, but Medicare pays for someone to come in 3x a week for 2 hrs. to bathe and dress him. We did hire someone else to come in on two other days to dress him and do range of motion. It was just worth it to me to keep my sanity. Our family is tremendous too, they come over and hang out with him 2 days a week for a few hours while I am at work. I work part time outside the home and we have 2 teenage daughters that keep us very busy. Running with the kids and all their activities, running my hubby to all his appts. and therapy etc can be exhausting. I handle everything else as far as all the household stuff and all of his other care...cathing, bowel program, nose picking, shaving and all the other stuff I thought i would never be able to handle, but it doesn't bother me at all. We laugh about a lot of it! If you can't laugh about it, what else can you do? Cry? No way! We have each other, my kids have a daddy, and God has blessed us with a journey with a few more bumps in the road, but I wouldn't trade a second of it if it meant not being together. I know what it feels like to lose him. The dr's never thought he would make it after his accident, he was pretty bad off, vent, collasped lungs, sepsis, and then his heart stopped, in fact over the course of 3 weeks after his accident, it stopped 13 times. They told me I had to prepare myself for them not being able to start his heart again, anyhow, thank God they did! I guess what I am trying to say is, you have to do what feels right and works best for the both of you. For me, I don't think I could do it without some help.
    There is nothing wrong with 2nd place.....unless you are in it.

  6. #6
    My hubby is my paid caregiver. For us as a family the stress of having to deal with PCA's, strangers in our house etc. was more than the stress of him doing my care. Its hard but worth it - FOR US. If it ever becomes too stressful we will hire an outside PCA.

  7. #7
    My boyfriend is my caregiver most of the time, except when my mom's around. He's not like anyone i've ever known. We moved into an apartment connected to my parents condo after college and are living here so we can save money and until we move into the new house. Jacob does everything, in the beginning he helped me get dressed, transfer, showers, bowel program, etc.. now that I'm a year or so post injury I do alot of that myself. I still need help but not as much. I get dressed, transfer, cook, shower but still need help for my bowel program. for a guy whose just turning 24 years old and just graduated college he's been more mature about this than anyone or I ever expected from him. He and my mother can't imagine bringing a PCA in they would rather do it themselfs. They wouldn't want to have someone else take care of me, they know that I accept help better from my family then someone I hardly know. It works for us, Jacob and my mom are the best I could ever ask for. don't think this set up would work for everyone but I'm glad it works for us and I'm glad I have Jacob.

  8. #8
    Quote Originally Posted by Emi2
    My hubby is my paid caregiver. For us as a family the stress of having to deal with PCA's, strangers in our house etc. was more than the stress of him doing my care. Its hard but worth it - FOR US. If it ever becomes too stressful we will hire an outside PCA.

    Emi2, How is you husband your paid caregiver ?

  9. #9
    Senior Member stormie427's Avatar
    Join Date
    Aug 2003
    southwest, florida
    jim and i talked about this at length...should i continue to work or stay home. for me i needed to work...that was my down time. i only work half the time that i used to, but it still gives me the time that i need.

    jim has a pca come in 2 hrs mon-fri. i do everything at night 7 days a week plus all weekend stuff. if need be i have no problem doing bowel care when duty calls. i've even changed his sp tube in the middle of the night on several occasions and have no problem helping with that.

    we went away recently for 2 weeks, and i did wasn't easy, but i wouldn't have it any other way. it gives jim and me our privacy and we sooo need that. i will tell u this...we r very lucky with the help that we do have. i trust them and they do their jobs very well.

  10. #10
    Quote Originally Posted by ldykawakii
    Emi2, How is you husband your paid caregiver ?
    I was injured while working so workers comp. gives me $ to hire a caregiver and allowed me to hire him after he too a PCA course.
    The only times that it causes stress is wen I have a bowel accident which is a situation where a scheduled caregiver wouldn't be around anyhow soooo....

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