advice for me and my caregiver wife

[brians]

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 ?

[KDK513]

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

[Wise Young]

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.

[TD]

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 http://sci.rutgers.edu/forum/images/smilies/smile.gif ), 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 http://sci.rutgers.edu/forum/images/smilies/biggrin.gif ) 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!! http://sci.rutgers.edu/forum/images/smilies/biggrin.gif )

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. http://sci.rutgers.edu/forum/images/smilies/frown.gif

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."

[brians]

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

[Sue Pendleton]

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. http://sci.rutgers.edu/forum/images/smilies/smile.gif

[kate]

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

[Carl R]

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.

[brians]

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.

[marmalady]

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.

[madmsw]

sound like you have a devoted wife for right now. do everything you can to let her have a life outside of your impairment or the day may come when see will no longer be anything more than your care taker instead of your wife and partner. http://sci.rutgers.edu/forum/images/smilies/eek.gif

[marmalady]

Hi, MadMSW - Had to read your profile to see what your 'handle'meant! Welcome aboard! Are you doing any of your graduate work in SCI family issues?

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

[TD]

to a resort for a weekend to get away from me. http://sci.rutgers.edu/forum/images/smilies/biggrin.gif It does not have to be a resort but maybe a local hotel or B & B would suffice. Any place that she can spend time on herself and not have to worry about you.

Are you sure about the state not being interested in your independence? You have contacted the Independent Living agency directly? They may be hesitant to modify your house because it is so old.

In Arizona they did not seem interested in how much my wife made or how much we saved, only how independent I could be with the modifications. It may be different in Maryland. I would ask for a reason (get it in writing) why they are rejecting your request for independent living modifications. This puts them on the spot and gives you ammunition when you appeal the denial for assistance. If you cannot tell I am pretty stubborn when it comes to getting help from my government after years of supporting their needs with my tax dollars. They may balk at their duties but will eventually come around when you make enough noise about it. Noise translates into contacting local news agencies about your plight. A lot of TV stations love this sort of story!

Roll-in shower - Transferring to a shower bench from a wheelchair can be dangerous...especially if you are alone. I have a commode chair that fits over the toilet (for bowel routine) that doubles as a shower chair. I took the shower stall out, tiled the entire bathroom floor and walls, lowered the drain so the water runs into it and not into my bedroom, and added a shower curtain that allows half the bathroom to be my shower stall. Admittedly, my bathroom is only 10'x6' so the shower is 5'x6'. I get help getting out of my clothes, cath, then roll into the shower. When I am done showering (my wife helps to wash my back and butt, makes for an "interesting" bath time http://sci.rutgers.edu/forum/images/smilies/wink.gif) my wife lotions me down then uses a squeegee to clean up the walls and floor. The whole process takes me less than two hours and most of it is done alone.

"And so it begins."

[This message was edited by TD on February 11, 2002 at 05:02 PM.]

[Wise Young]

Ron, your post is inappropriate. Please cease posting these kinds of messages. Wise.

[marmalady]

Ron, your message has been deleted from this topic because of inappropriate content.

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

[martha]

Marmalady -- didn't realize you could do that. GOOD JOB!

martha

[Sue Pendleton]

Hi TD, Have you tried finding a long handled bath brush to do your own back and butt? I think I got mine from:

http://www.sammonspreston.com

It's plastic and the curved end fits right on the grab bar near where my shower bench is. Those foam ended things rehabs give you are useless. Can't get the soap to foam and they don't really clean just smear soap around. They also mildew quickly. I think mine was arounf $15.00 but now I only need help with lower legs and feet and I'm a C5-7 incomplete and use a shower bench right now. Next time I'm getting a shower chair (eaiser for me to transfer to).

[marmalady]

Hi, Martha,

Blush-blush! I also inadvertently deleted the entire post re 'weaning from my son's care'. I want to apologize to the starter of the thread, and any of the posters who had valid responses to the questions asked. I'm thinking of changing my name to 'computer dummy'!!!

Martha, could you email me with your email address? I've got a question for you. Thanks!

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

[TD]

I have one but it is useless because I cannot wash myself effectively with it. There is probably a 4 to 6 square inch area on my back that I cannot reach and that curved sponge dohinky is too flimsy to wash the area effectively. I am sure there is SOMETHING out there that has an effective head on it but I like sharing my shower with my wife. http://sci.rutgers.edu/forum/images/smilies/wink.gif http://sci.rutgers.edu/forum/images/smilies/smile.gif Then there is the area on my hips that I cannot get at without risking sliding off the chair because it is so slippery from the soap.

As my wife puts it, "We don't have sex anymore we do therapy". http://sci.rutgers.edu/forum/images/smilies/confused.gif Due to several conditions I have to deal with, i.e., Hyperesthesia, Central Pain, AD, etc., SHEhas decided that she would not like to risk killing me. http://sci.rutgers.edu/forum/images/smilies/biggrin.gif This does not mean we are not intimate it just means that "crackers" is not crisp any longer. http://sci.rutgers.edu/forum/images/smilies/biggrin.gif http://sci.rutgers.edu/forum/images/smilies/cool.gif http://sci.rutgers.edu/forum/images/smilies/wink.gif

Oops!! Maybe I should be discussing this on the other forum.....

"And so it begins."

[fara3923]

My name is Fara and i am a wife and a full time caregiver to a quadriplegic.
My husband has been injured for three years, he broke C5/C6 complete. I am a very lucky girl considering that my husband is in a manual chair and can cath, dress and do his own bowel program with the miracle enema THERAVAC. But lately i have felt my will grow tire and i find myself thinking about being and wanting to be someone else. I have tried all I can to be happy but i am not sure what else to do. I have asked hime to make my time special with him. YOu know, if he could take me out or surprise me with a planned out evening or a date, but he always is telling me about how hard it is for him to plan a night with our busy lives. We are both full time students. I just feel that in order for a quadriplegic male to keep his wife, he needs to reassure her that he is better for her than any able bodied person out there. He needs to do things differently than when he was able bodied. He needs to keep her wanting to stay with proving to her that he is doing what he can to make up for what he cant do, like buy her roses, write her poems, plan a surprise weekend, no matter how corny or childish, just to .. . I dont know I guess i am always asking for too much. But i really want this marriage to work, and at 22 I have no sex life, i live in miami but i cant go to the beach without feeling so guilty about not taking him wife me, its a little hard to push him around in the sand you know. I am a child but a wife, i married my husband after his injury, although we were dating when the injury happened. Lately all the bowel accidents and UTI have subsided and I thought i would be happy and content with all that i have and allthat my husband is able to accomplish as a quad. BUt i am miserable all the time, and i was wandering if there were any caregiver wives out ther that would just tell me what i can do to be happy. What can i do to stop feeling guilty about doing things that able bodied people do. How do i tell myself that just because my husband cant feel me i should still want to have sex with him? When i got married it was two years into the injury and i thought if i had love him thus far it must be true love, and I could not leave him because if it were me i would just die to be alone in his position. I was happy keeping myself reminded at what a wonderful thing i was doing and how much he loves me because of it all. But now i find myself feeling hopeless. Regardless of HOw nobel and rightous i am being the bottom line is my animal instincts desires a man who can feel me, and at the end of the night, after all is done in the day, my husbands ass hurts so much he has to sleep on his front. How do I learn to live with my new situation happily, i mean. I can put up a front, i can pretend and i can convince myself that all that matters is that he is alive and that i am in love. But every waking moment is painful, and every time we talk, and me and my husband communicate well, i feel that there is nothing to solve physically and all that i have mentally is not enough to keep my happy. I am hoping that he will be more romantic, maybe i hope that that would make a differnce. For example, on valentines day, i think that considering the fact that so much is taken away from us with SCI that days like this should be use to our advantage to remind us of how important the little things are. But my husband feels that cards, presents and things of this nature is meaningless. Well it is exactly little things like this that would keep me excited. But when valentines day comes along, i find myself dreading it, remembering just how, sex all night long would have made a great valentines day and now there is no card to open and we dont have sex either. Infact i found myself waiting in line at tony Romas, taking away dinner to have that night. I would have loved to come home to a house full of candles and a dinner. Maybe my sex drive would return if i felt that romance was still a part of our marriage. Am I asking for too much, or am i concentrating on stupid things that shouldnt matter. But maybe for other quadriplegics out there, try planning a weekend where your spouse does not have to do any thinking but follow you around. Have a dinner planned and a movie, i feel that if you are physically disable, that use your mind, thinking can be tiring. Do the thinking and the worrying for her. For example, just haveing my husband decide what to have for dinner, evn if i haveto cook it, takes the stress off thinking about what to make. Or having my husband fill the car with gas at a full service station, rather then waiting for me to ge in the car to an empty tank, is rewarding, and it means alot that he decided to do what he can do with the help of other instead of only mine. I have no problem with the bowel program or any of that because it just made us closer and poop and pee is nothing more than what you ate and drink. But i dont really know where iam going, But my effort towards this letter was to meet people in my situation, and i am hoping that i will her from someone soon. Please email me, just to talk fara9@hotmail.com

[TD]

I suggest you start your own topic for this. You need words of encouragement and will find them here. The problem is most caregiver/wives will not look for your post in someone else's post. Please take heart and tell your story again.

"And so it begins."

[brians]

I agree that this needs to be a seperate topic so you can get helpful answers from more people.The sex thing is strange to me.Being paralyzed you lose a lot of the physical things you used to do so sex shoulod be enjoyable to him.You have to do all the work,meaning posioning yourself so he can play with your hole body and he should see a urologist and get some viagra.Go to the beach for a couple of hours not the whole day,he needs to understand that us paralyzed people have lost out on a lot of things we used to do but you should not be penaqlized.He should appreciate you more ,marrying a quad and the life you have to live.He needs to get on this website and learn from the rest of us.Again,you need responses from more women so you should put your post on the relationship and sex forum

[Wise Young]

Fara, would you like me to move your post into a new topic? Wise.

[fara3923]

Yes I would love to have this posted where it seems appropriate, sorry for innterrupting the wrong post forum