It's ok to know your limits. You are not and should not try to be superspouse or superkid to your disabled family member. Practically speaking, it's not doable. Your disabled loved one needs to be as independent as possible, which means not relying on you unnecessarily. Family members, you will be needed at inopportune times regardless... so save yourself for those middle of the night colostomy bag/flat wheelchair tire/cath/clothes changes, meal/travel/hospital stay/birthday party/Christmas dinner preps, and of course the endless picking up of the remote/cellphone/forks/brushes/keys/water bottles/toothpaste/meds/towels.
Your loved one doesn't need to be solely reliant on you. You are in denial if you think otherwise and you are cheating yourself out of a husband-wife or parent-child relationship. If that doesn't convince you, try reading Matthew 6. Sometimes people do things for the sake of others noticing and praising them or so others will pity them or envy them. Guess what? If you are human, you are guilty of all of those one time or another. The Bible says doing things with such motives and receiving those reactions from others is your only reward. And you risk being at least part,y responsible for stifling your mate, harming your marriage, and stealing your own joy. And you may not even be aware of this self sabotage. Before you go all self-righteous on me and if I haven't offended you yet; give me time. I probably will. To clarify, that is NOT my intent. My intent is to help you make your own situation better. I promise. You are gonna make plenty of your own mistakes; no sense in repeating mine.
I speak from both sides of this coin. I have tried to be superhuman, Miss 'do-it-all' because 1) no one can do it better, 2) if I don't, who will?, 3) I am physically capable, 4) geographically desirable, 5) schedule available, 5) it is my responsibility, 6) felt guilty for sleeping instead, working out instead, watch tv instead, getting myself ready instead, 7) it's too expensive, 8) he needs me and I can't let him down, 9) I'm just naturally a caregiver, 10)I want to...you get the point. Guess what? Those were all lies I told myself to continue a codependent relationship with this third wheel in my relationship called Disability. I found myself 1)exhausted, 2)resentful, 3) sleep deprived, 4)damaging my marriage, career, body, other relationships, 5) and moving from role as mate to nurse/attendant/cook/maid/employee.
Once I accepted my limits and set boundaries, which I most often crossed, and LET GO...we found help, found the money (even when I was laid off), found our mutual independence, found our romantic spark, found our free time...again, you get the point.
To give you a little history, Matt broke his neck in '92 and we became a 'we' a little over 4 years ago. Matt relied on his mother mostly, a mentally challenged uncle, 2 sisters, several good friends, a few bad friends, and a handful of attendants along the way.
After about 3 months of doing it all on my own, I told my boss I needed to office from home 3 mornings a week to which he reluctantly agreed (I can help you present this option to an employer) and eventually quit 10 months later. I took a position working from home, we hired an attendant, and things were so much better! Until they weren't. The attendant developed an attitude and quit doing things he was paid to do and I got laid off. Through prayer and faith; things turned around and I got another job making...30% less and added a second job (work from home) 3 months later. With the money back on track, we interviewed and hired an attendant...who no showed, one who quit 2 weeks in, and another who disappeared leaving Matt stranded in bed...and weeded out a few more.
Finally, we hired a good one who is still with us. Praise God. This time around, Matt and I analyzed what went wrong with the others and realized: 1) there can only be one boss, Matt, not me. Otherwise, it's confusing for attendant when he receives conflicting duties, priorities, or too much to do in a given time. 2) we needed to manage the attendant's expectations PRIOR to the interview and maintain what exactly those would be., 3) encourage him and Matt to discuss little nuisances and nuances as they come up instead of letting them build-that was awkward for them both at first but now 13 months in and a couple 'issues' later...all is good and mutually beneficial:)
Here's how we find 'em:
We post an ad on the web, screen out anyone without experience, anyone with a questionable resume, email address, or outgoing voicemail, etc. I email the remaining applicants for further info (elaborate on experience, pay range, hours available, and so forth. If I get a bad vibe or their answers are not what I am looking for, they are out.) Once I weed through and find the 'good ones', I print them out for Matt and he pulls the ones he likes. He will call them. If they sound unprofessional or shady on their voicemail or during the phone interview, they are out. Matt doesn't tell them they are being interviewed on the phone. The ones that make it through, Matt confirms that they live within 15 minutes (any further than that, after a while the drive/gas deters them from wanting to work for just a few hours per day) and that they have transportation. Matt meets them, without me (I tend to try to takeover) at a nearby fast food place. He brings with him a copy of the ad, a list of attendant duties and their frequency, a list of medical duties/frequency, and a list of personal attendant duties/frequency. He asks for a copy of their DL, references (which we actually call), writes down their license plate number, and a copy of their SS card. We pay 20 bucks and do a background check. These steps are each crucial. This job is intimate, important, and can be the greatest thing for all involved if the expectations are set up right from the start. Remember, it never gets better than the interview. If something doesn't add up, don't let them in your home, in your life...it never works out.
Here is a sample ad we use. It's ok to be blunt. Don't beat around the bush regarding what you need and expect. We do private pay and don't go through agencies as they are too expensive.
MALES ONLY APPLY--NO EXCEPTIONS Please
Experienced Attendant/Assistant Care for C-5 quadriplegic male- I'm able to drive and quite independent.
Transferring to shower, from bed to wheelchair, dressing, meal prep, range of motion exercises, continence care. Chores around the house-laundry, sweeping, making bed, general cleaning, light yard work, errands as needed. Essentially, I need you to be MY hands and let me give the direction. ex: If I ask you to help me cook; I want to be involved so let me lead and you follow. On the other hand, if I ask you to cook FOR, do it however you want as long as it comes out the way I want.
Send resume via email.
I want to manage the expectations hence this blunt ad though I am very laid back.
Be able to lift 110 lbs.
Days and hours are flexible. Part time position. You must live within 15 minutes of SW Arlington-NO EXCEPTIONS please
Due to the nature of this job, you also need to be flexible but RELIABLE.
REFERENCES will be checked.
If you do not meet the above criteria PLEASE do not apply as this is always a waste of time for each party;)
3-6 days per week. 2-4 hours per day. Depending on your needs and mine. I prefer mornings, however.
Thank you in advance!