There are lots of reasons why people with disabilities decide to get more help. Some don’t have a choice – because of the extent of their disabilities, because of their family situations, or because of other health issues. Some don’t have time to do all of their personal care, homemaking, and other tasks themselves. And some just plain don’t want to do these things themselves! However, regardless of the reason for getting help, most people prefer to have the entire caregiving and care receiving process be as short and un-disruptive as possible.
One good way to minimize disruption and to keep caregivers from becoming the focus of your life is to get organized. You need to figure out just how much help you need. Doing this is a two step process. First, you’ll want to consolidate tasks so you’ll need as little help as possible. Remember: assistants and helpers get paid by the hour. Then, you’ll want to actually “do the math” and figure out just how much help you really need.
Decide which end of your day – morning or evening – is most important to you. When do you need to be on time? When does your performance matter most? If you work outside the home, chances are your mornings are pretty important. If you don’t go to a specific job or if you don’t need to be up and going early, it could be that the evening, when you’re spending time with family or friends, is your most important time of day.
Regardless of how much assistance you’re going to be needing, keep this important end of your day as free of tedious time consuming chores as possible. If the morning is your important time, move showers, bowel programs, Leg Bag cleaning, and so on, to the evening. Then, when you get up, just do the basics – dressing, washing, teeth brushing, etc. Save the big, hard things for later.
On the other hand, if you want to be able to spend an uninterrupted evening with your family and kids, if you like to “surf the net” into the wee hours, or if you’re a party-animal, keep your evenings uncluttered and move all those time-consuming routine tasks to the morning. Then, when you’re ready to hit the hay, you can do it in five or ten minutes, after just brushing your teeth, pulling off your clothes, and sliding into bed.
Regardless of which end of the day is most important to you, the goal is this: during that time, do everything you can to minimize the number of things you have to do, and the amount of time it takes to do them.
- Next, think about ways to streamline things. Can you move tasks to different days of the week to balance the workload more evenly, or even to eliminate the need for help entirelyon one or two days?
- Can you brush up on some of your own independent living skills so you need even less help? If getting your feet up onto the bed is all that keeps you from getting into bed independently, work with a therapist to see if you can master this task. If it’s leg bag connections that are the problem, look at equipment modifications that might make things easier. And so on.
Now, it’s time to focus on the help you need at the opposite end of the day. It might seem like everything has gotten moved to this time period, but keep in mind: you’ve got 7 days in a week, 30 in a month!
- Have whoever helps you do more than one thing at a time. Once you’ve gotten started on your bowel care, or while you’re in the shower, could your lunch be made? Could your bed and equipment be prepared for evening?
- Move tasks around so that the easy, uncomplicated tasks are clumped together – so a friend, partner, or even younger sister or brother could handle them.
- Consider equipment or modifications so you can do more for yourself. Dressing loops? Velcro? Those lamps that you turn on by clapping?
You need to calculate just how many hours of help you’ll need per week. Below is a check list that people with spinal cord injuries have used to help them calculate their needs.
There are hundreds of ways to consolidate, and some people have been able to group tasks to such an extent that they can eliminate either their morning or their evening assistant. For example, Dave, who has Quadriplegia, made these simple changes to his routine:
- He realized that as a student, evenings were his most important time. So, he switched his showering, hair washing, and bowel care to the morning.
- He had Velcro adapters put on his shoes.
- He replaced his blue jean snaps with Velcro.
- He had his morning helper pre-place his skin-care padding on his bed, sterilize the night-time urinary drainage system, and re-set it up with the top end and the connector placed on the bed where Dave could reach it.
- He had his bed moved so he could easily reach the pull cord for his light – as well as his phone.
- He had his morning helper tuck the blankets along the side of the bed that was against the wall, rather than at the foot of the bed.
When evening rolled around and Dave didn’t want to have to go to bed on someone else’s schedule, he was able to do the bare minimum for himself and get himself into bed and safely “tucked-in” for the night.
Does this mean that everyone who re-organizes and consolidates enough will be independent and safe on their own? No, but just about everyone can make his or her care less complicated, less disruptive, less costly, and less time consuming. And, that’s a lot!
Like all of our brochures, this is part of a library of educational brochures developed by Craig Hospital with a federal grant titled, “Marketing Health Promotion, Wellness, and Risk Information for Spinal Cord Injury Survivors in the Community.” The opinions expressed here are not necessarily those of the funding agency, the National Institute on Disability and Rehabilitation Research of the US Department of Education.
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