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Thread: advice for me and my caregiver wife

  1. #1
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    advice for me and my caregiver wife

    the past 11 months have been hell for my wife and i need for her to take a break. I was injured 11 months ago and am a T4 cmplete.I have had lots of complications so she is either taking care of me at home or driving an hour each way to visit me in the hospital. We have 4 kids ...12,10,6,4...and she now has the responsibility of driving the kids to their sport practices,etc.We also live on a horse farm and she has had to take over my responsibilities for now.Things will get better over time..i have started to drive and soon will help with running the kids around.I have hired a freind that helps me around our farm and takes me to doctor appointments,etc. I have a wondr woman who comes hear every morning to help me with my morning routine and getting dressed...also i think that i will not ned her for much longer. Did i mention that our house was bult in 1749 and is totally unacessable i can not even get into the horse because the doors are not wide enough so we have been completely changing things for the past 6 months so that i can move in...I know live in a cottage on our farm that we added a ramp to and hanicapped bathroom when i was first in the hospital she runs or drives between our house where the kids live and me in the cottage.
    Bottom line is she is very tired. What should i do? my thought is to take her away for a couple of days to a warm place but she still has to care for me. She had the opportuinty to go to key west with a couple of other woman we are freindly with that also have 4 kids but she did not want to leave me until i am more independent. Do i take her away, do i bring more caregtiver and her husband so my wife does not have to help me as mush..problem with that is cost and lack of privacy. Any suggestions ?

  2. #2
    Senior Member KDK513's Avatar
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    Brians,
    My husband was injured 2 years ago at the same level as you. He was age 50, I was 42 and our children 16 and 14. While he was going through inpatient rehab we were told that when he went home he would be fully independent. Hmmmm, I certainly had a very different perception of what that meant than the reality we faced 3 weeks later. Complete independence at this level is realistic and achievable; however, it takes awhile. Be optimistic and very patient, expect that problem solving is minute by minute and solutions often different than advised. Creativity and humor will save the day! I guess you know that by now, sorry!

    Like you, my husband was most concerned about his spouses well being. He recognized early on the value of a happy, healthy spouse/caregiver. He begged me to hire someone to help with his care. I resisted for 2 reasons; the expense and also his future independence. I was concerned we would become reliant on an aid before it was absolutely necessary. In the time period between his third and fourth hospitalization I was interviewing aids and trying to find someone to be there at night, so I could sleep, no luck. Things eventually improved.

    Brians you are so right! your wife needs a break, not from you, but from the omnipresent responsibility of so many and so much depending on her. You know her well, give her a moment she can count upon, or a few days where she may be CAREFREE. She needs to know you will be cared for in her absence, be it 1 hour or 2 days. Four children? hmmm! how wonderful are your friends? We are all so different and so what is fun for me will be different for your wife. I would, with your patient regard, like to share my 2 favorite CAREFREE trips.

    Six months after my husband was injured I went whitewater rafting with our son, 3 other moms and their sons for 2 days. I had arranged for my husbands care and was able to focus solely on our son and having a memorable experience, I even have the video to commemorate this wonderful trip.

    Nine months later our daughter was relentless in her insistance that I make another service trip to Appalachia with her and her classmates. I could not get her to understand that after making all the necessary arrangements at home, staying in a double wide trailer with 23 others on a freezing cold weekend in the hills of KY. was not my idea of a break in the action, I finally relented and agreed. The day before we were to leave the trip was cancelled, oh sweet relief!
    Meanwhile I was getting grief from a friend who repeatedly renewed her invitation to visit her in NYC. Oh yeah, I can rehab houses, but not have fun in the Big Apple. That night I was inspired, gambled at priceline.com and so began the onset of an incredible 36 hours in NYC. My husband was delighted and our daughter in awe. We packed so many memories into 1 day of adventure that we will treasure always.

    We stayed in Battery Park City, had coffee in the Wintergarten and dinner at Wild Blue in the World Trade Center. It is incredible that we may never have this experience again, for it is gone. Dr. Young posted a photo of the damaged Wintergarten. What this photo could never convey is the cacophony of sound of so many different languages, and the splendor of color, so many different races and costumes, a wedding party posing for photos on the stairs, the tropical plants, a view of the harbor and promenade, all over Starbucks coffee and delicious bagels from a nearby deli. We were determined to experience as much as possible and we did. When I feel overwelmed or sad I may call upon these special memories as recent fun and be glad. Uh, we also managed to support the local street vendors and pick up a thing or two, in fact, we needed a box or two at the airport in order to bring it all home. Amazing what 2 women can accomplish in a few hours when highly motivated. I am forever grateful to the professor from Columbia University who was seated next to us on the plane to JFK who enthralled my daughter with a discussion about the economics of third world countries and informed me that cabs were not allowed to charge more than $35 to and from the airport. He saved me $45 that we could spend on more fake Oakleys and Kate Spades. Oh jeez, I just looked at the time, Later, Kath

  3. #3
    brians, most successful family caregivers that I know take at least a day off weekly.

    Regarding vacation, in my opinion, you need to make sure that it is a vacation for her, too. You should try to do something together that you can participate in. You don't want to go on a vacation and watch her do things.

    Regarding caregiver, I think that you will probably not need one as you get more experience. My friend, Mark Pinney, a C6/7, does not have a caretaker but has three young kids and a full-time job as CFO of Acorda Therapeutics.

    Have you considered sailing or boating vacation with your wife? I have several quadriplegic friends who are accomplished sailors. For example, David Whalen sails alone all the time and does competitive sip and puff sailing. I asked him what happens if the boat capsized. He laughed and said that he would go down to the bottom faster in his powerchair. Shake-a-leg has a very good training program with specially designed boats for quads and paras. There are shake-a-leg sailing programs in Miami and San Diego other places that might be nice to vacation in. Many people have told me that learning to sail by themselves changed their lives.

    Wise.

  4. #4
    Senior Member TD's Avatar
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    Sharing my experience

    I am a T4 incomplete and my accident happened nearly 7 years ago. My wife has cared for me the whole time since we do not have any children left at home or family nearby to help. Our one adult child is married with three children and has problems of her own so we do not get a lot of help from her. The few friends we have left cannot relate to our problems so my wife has taken on the responsibility of working a full time job (she is a court reporter)while taking care of me and our home.

    It took me nearly three years before I could convince her that she could not do everything. I have learned to do most things for myself (cathing, bowel care, showers, etc.) with a minimum of involvement from her. I get up and dress on my own, make my own breakfast (she still does the dishes ), and go about my daily life and routine. She still calls me every afternoon during her lunch to ensure I am all right. She suffers from "burnout" occasionally but my solution has been that I give her a night out. This disrupts her "need to be there" mentality for a short while. Eventually she began demanding time for herself (a good thing ) like the weekend out. We go on two-week vacations each year to Minnesota where her family lives and they help with the minimum care I need so she can do the things she wants to without worrying about me. We are both avid fishermen so we get out on a pontoon boat together and spend time alone. We share driving the boat so each can catch fish. (BTW, last year I pulled in two 4 1/2 pound Largemouth Bass alone while she got the net out!! )

    Due to a TBI and the drugs I need to take to get through my day I have decided it would be unsafe for me to drive so consider yourself lucky in that respect. You may have to begin relying on your children for help until you get to the level I am at but I think you will find them more than eager to help.

    I have an "adopted" daughter whose family abandoned her during rehab so I took her under my wing. Her children call me grandpa. Her 8 year old son has been eager to come over and help me whenever he is allowed. I tell you this so you can relate to having your children help.

    Once you can rely on your children then I suggest you send your wife away for that weekend. I am sure she can trust your children to care for your needs. A nearby friend for emergencies should be all you need. Imagine the joy of having a "Dad and kids" weekend again!!

    Regarding making your house accessible. Have you contacted your state Independent Living Agency for assistance? I recently had home modifications including a roll-in shower, ramps, etc. done and it was paid for by the Arizona Department for Independent Living. I am sure Maryland has a similar agency who will help get you into your home. Since you have a 17th century home you may have to make a new bedroom for yourselves on the first floor. I do not believe the state will pay for an elevator.

    These are just some suggestions to get you started. If you have any questions drop me an email and I will try and help. Good luck on your path to independence.

    "And so it begins."

  5. #5
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    to TD

    thanks for the reply
    where does your wife go to get away for the night or weekend ?
    you mentioned a roll in shower,what do you mean,i transfer to a bench in the shower but am interested in other options
    The state would not help me,i was penalized by being a good saver,they said i could afford it myself...also they were not sensative to keeping any changes to match the house

  6. #6
    Super Moderator Sue Pendleton's Avatar
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    Brian, have you contacted the group that keeps houses on the historical registry? If yours is not on it try anf get on the list. They will then give out loans at 1% for all renovations so you can keep the feeling of the house and make it accessible. Our state house is accessible and it's about the same time frame.

    We took a cruis this past Fall and because you only unpack once, that can be a terrific holiday. I understand Celebrity will be doing round trips from the Port of Baltimore soon. We did ours from NYC which was fairly easy (oops, make that Boston because it was after 9-11) but again, no flying to meet ships.

    And if you have a caregiver who wants a few hours here and there I could really use a good one. I'm like you and saved too much and pay for service is not easy in our economy. Everyone wants $20.hr plus all benefits or to live in and our house gets crowded with just the 2 of us and the dog.

  7. #7
    Senior Member kate's Avatar
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    brian, I just read your post about your wife needing a break. I'm a new member to this forum; my husband was also injured (c6 incomplete) last March, and we have two daughters, aged 11 and 13.

    So, did she get a break? I went to a local hotel for a couple of nights in October--close enough that they could get me back for any emergency, but definitely off the premises. I was thinking as I read your post that your older kids probably spend a fair amount of time helping with the little ones, so they'd be less available to you. I think if I were your wife, I'd see if any responsible older adolescent types were around to do the little kid thing, so that your own older ones could see to what you need.

    This assumes, I guess, a certain level of proficiency for you with stuff that has to stay private from growing kids. Bruce does it all himself except when he needs those "squeezy socks", so both girls are checked out on helping him put those on.

    Anyway, I hope she did get out. Two nights away, with sleep and time to read the newspapers and think and walk and sleep some more, were really all I needed--I think because they signalled to me that I COULD get away.

    If nothing else, offer to read to her, or comb her hair, or rub her feet . . .

    take care

    Kate

  8. #8
    just another idea, my wife goes out with her friends for dinner and a glass of wine about once a month. This seems to really give her a break and she gets to socialize a little, since she works from home most of the time. I don't think it really matters what she does, just as long as she gets a break from me and my 3 year old on a regular basis. About once every six months, she and a couple of her friends will go for a weekend somewhere and just relax, again it doesn't really matter where. And I'm not sure what your wife taste are, but my wife really enjoys a day at the local spa where she gets a massage, manicured, pedicure, etc.

  9. #9
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    Thanks

    Thankyou for your replys.My oldest,12 year old girl,helps with her younger brother and sister and my 10 year old-boy-is strong enough to help me.My wife will not go away now because i am on bedrest because of a pressure sore and am going to have surgery on my shoulder next week. When I am healed and can drive the kids around she is going to go away for a couple of nighs to have private cooking lessons (using an AGA stove which we put in our kitchen as our house is remoldeled for whellchair acessability.

  10. #10
    Brian - OMG - an AGA??!!!!! To die for! Cooking classes sound great for your wife; cooking is a great therapy. Please tell her to feel free to email me if she has any questions, or is looking for a certain recipe.

    Sorry about your pressure sore and the surgery, and hope everything goes well.

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

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