My caregiver history includes many different scenarios. As a C4-5 quad, It started out of rehab with my parents. They did everything from chauffeur to bowel/bladder care. I was very fortunate to have my Mom @ home fiull-time to take care of me on top of everyday family of 5 stuff. Over the 4-5 years there were very challenging times because I was 15 and all of the crap surrounding my new quad life came out on them. Both Mom & Dad did very well not venting on me, but I'm certain it added stress into their relationship. Off to college for the next 4-5 years where I hired on average 2 new attendants every semester. (no, I was not Richie Rich, every dollar came from the state Vocational Rehab) My secret was and is, develop a routine for everything and stick to it. Then, just plug willing people into the routine. Make them follow your routine or fire them. Yes, it's hard, but, for me, it's what I had to do to be as independent as I wanted to be. At the end of college I married my first wife. It was actually a condition for her to marry me that we have at least one attendant. She claimed that it was to keep her from thinking of me as a "job". Ten years later; a sexless, turbulent relationship, ending in her cheating and my moving out. It was a constant trial to keep good attendants when they see my wife not doing what they considered "wifely duties". Lesson to learn here... do not marry under conditions or prenup. They bring a black cloud into the relationship. One year later I re-married to a woman who cares for me year-round. There are days when she is tired mentally and/or physically, but we push through with communication and love. The best thing I've learned, just as we learned in rehab; do as much for yourself as you possibly can. Looking back over the past 25 years I have had over a hundred caregivers. I'll continue to do what is necessary remain independent and so should you. Get connected to your state's Voc Rehab and get as many assistive devices as you can to take the pressure off your caregiver; lifts, chairs, etc. Get employed, there's something out there for everyone.
Aaron Mann On Sun, Oct 6, 2013 at 3:34 PM, Danny Hearn <ddh...@sbcglobal.net> wrote: > Well said, Don ! > > *From:* donald scott <rollingl...@yahoo.com> > *To:* "quad-list@eskimo.com" <quad-list@eskimo.com> > *Sent:* Saturday, October 5, 2013 8:44 PM > > *Subject:* Re: [QUAD-L] Spouse as Caregiver? > > Hi group, > > I'm not comfortable saying much about my relationship status here because > it doesn't just stay within the community and not end up on the web. I can > say I have much experience in this area. Basically It comes down to no > matter who cares for you be it a wife, parent, love one, or stranger do > everything possible that you can do yourself. For the things you can't do > yourself be patient, understanding, and grateful to those who are helping > you. That doesn't mean you have to just let them do as they please with > your care. Be clear with them what your full needs are. Be organized and > make things go as easy as possible. IF AT ALL POSSIBLE GET OUTSIDE HELP. If > you can pay someone else or get state help to do even small stuff, I think > it's a great idea. Anything you can do to give your primary caregiver a > break is recommended. Especially if it's someone you care about being in > your life for a long time. If your in a dating or marriage situation and > want it to last you must do as I said previously. As well as continually > tell them how special and glad you are that they are willing to share all > aspects of your life together. Being disabled means we have to work twice > as hard to be romantic, sexually creative, and just plain nicer than normal > people if we want love to last. Divert the care they have to do with fun, > love, and laughs. Oh, and during your care periods try to keep things lite > and fun when ever possible. When your together not doing quad and house > stuff try really hard to make those times special. Those times can out way > the quad times. > > My 2 cents, > Donald C5-C6 22 years post > > > > >
