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Reasonable Accommodation

Caregiving and Work

The type of employment you have when you become an adult makes all the difference in how you live your life.  It dictates when you’re asleep or awake, what you wear, what you’ll be exposed to, the type of people you will encounter, and your standard of living (unless you are independently wealthy or someone else contributes to your income).  Though it’s possible to change some of these by changing where you work, the bottom line is that work plays a significant role in our lives. Besides the income we derive from being employed, many jobs also provide benefits, social interaction, a sense of accomplishment, ways to enhance our self worth through positive contributions, and an identity (while especially true for men, for many (but not all) women, it’s equally true). There’s a lot of positive to be said for working.
On the other hand, “work” can bring a source of conflict.  When you’re employed, your employer counts on you to be present, timely, focused, energetic, accurate, cooperative, cordial, and do your very best on their behalf at all times.  If they need you to switch up your hours, they expect you to be able to make any necessary personal adjustments to make that happen.  For most employers, (though they might not say it) they expect your job to come first.  Many say to their employees, “Leave your personal life at the door.  When you’re here, you should not be thinking about anything else but your job.”
Though working can be a good thing, being a caregiver and an employee are often in direct conflict with each other. For instance:
Employers expect employees to be at work and on time. That expectation is often difficult, if not impossible for a caregiver.  A caregiver needs to provide the following for him/her self and dependent prior to arriving at work:  grooming, dressing, toileting, feeding (preparing, feeding, and cleanup), oral hygiene, and preparations for the day—any one of which can lead to a delay beyond their control (clothing that gets soiled after dressing has occurred, toileting that takes twice as long as usual, food spilling on before-mentioned clothing, emotional breakdowns needing attention, equipment that does not work, etc.)  For myself, I have to plan to allow three hours for “us” to get ready if I’m going somewhere and I still find that my being on time can be unpredictable.
Employers expect their employees to be well-rested and energetic.  Caregivers often get as much sleep as is available between the time they finish up one day and start the next.  Dah, doesn’t everyone?  However, the amount of times to finish a day varies depending on their dependent’s needs on that day.  Sometimes they go to bed when planned; other times a load of laundry is unexpectedly needed and they’re up an extra hour or two.  Sleep time, for the caregiver, is also interrupted by the need to assist their dependent with comfort and bowel/bladder elimination during the night.  Therefore, well-rested probably means just enough sleep to be functional and the amount of energy they have is directly proportional to the amount of caffeine ingested and still in their system.
Employers need their employees to be focused and provide accurate and competent performance.  Being focused for a caregiver is a question of being focused on what?  The caregiver always has to be planning ahead to make sure he/she is ready for the next big event and is required to coordinate all their dependent’s activities and needs whether in their presence or if receiving assistance from someone else.  It is not uncommon that a caregiver would need to call a doctor or therapist while at work to discuss a new development, arrange for equipment or supplies to be repaired and/or delivered, or to talk to the secondary caregiver regarding a question or concern that has arisen.  Caregivers have to have the ability to have split personalities at all times because when at work they need to be able to address effectively their work duties while at the same time managing the life of their dependent. They, in fact, do have great talent at being focused but the need to switch focuses repeatedly is where the problem comes in.
continue reading at: http://multiplesclerosis.net/living-with-ms/caregiving-work/

A Short Trip Back Home

For the most part, Lynn and I are home bodies.  He just doesn’t handle traveling very well so we rarely leave home.  His already ever-present exhaustion is made significantly greater when he travels and it usually takes a full day to recover afterwards; therefore, we rarely do any short trips since he spends the time at our destination recovering.  Because of this fact and the fact that their home is not wheelchair accessible, I have not made the five-hour trip “home” to my parent’s house since around 2008.

I grew up in one of those rural areas where everyone knew everyone else and more than half of the neighbors were related in some way.  My cousins and I used to all get together annually for a family reunion; however, since Lynn developed MS, we haven’t attended.  I’ve really missed seeing them all and figured I would never see them again due to our travel issues, but my parents and brothers have come up with a plan for us to get together in a few weeks.  I’m really looking forward to seeing all my relatives but planning a short trip is as challenging as planning for a long one so I also dread it in many ways; especially since Lynn will not have a recovery day before he has to attend the reunion events.
In planning for this trip, my first order of business was to find a hotel nearby that was wheelchair accessible. That’s not as easy as it sounds. Many pronounce themselves to be handicap accessible but when you start asking questions, all “accessible” actually means is that they have handrails to use in the bathroom.  That is totally useless for my purposes because he couldn’t reach them anyway and he can’t transfer himself to the toilet so they serve no purpose.  Instead, my “search” criterion was for a roll-in shower.  I figured if a room included a roll-in shower, then the room planner might have a clue as to what was needed for someone confined to a wheelchair.
The first place I booked had the shower but the room had two double beds in it and the picture of the rooms looked really crowed.  Too much furniture in a room makes it nearly impossible for him to turn his wheelchair around so I began to look for something else.  The one I booked yesterday has a single king-size bed, a roll-in shower, a small refrigerator and a microwave in the room, and wide doors.  Mentioning the 32” doorway is a plus since that’s an indication they know what they’re talking about. I’m still a bit concerned because there was no actual picture of a handicap accessible room so I still wonder how much space there might be for him to turn around in.  I guess, if necessary, I can have maintenance move out furniture if I need more room for the wheelchair.
To continue reading this blog, click here: http://multiplesclerosis.net/living-with-ms/short-trip-back-home/