Posted by AskNurseLinda on Oct 1, 2018 10:57 am

62a315bb8fcb7ddfb2e56a8c779c9bfc-huge-nrMoving from one phase of life to another is a challenge. It does not matter if the transition is a happy choice or if it is forced upon us. Deciding to marry, have a child, start a new job can be happy choices that people make because they want to make that change. Still, the process of leaving your old life and adjusting to a new life can be daunting.

Even more so are transitions that you do not choose but those that happen such as getting ill, trauma, a loved one leaving. These are even more difficult not only because you did not want the transition to happen but also because you might not have any plan for how your new life should look. In fact, you might be entering a part of your life for which you have no experience. You might not be able to envision how the new life will look or what you should do next.

This is a typical experience with spinal cord injury or paralysis. If you have a head injury or stroke, the future might be even more compounded if choices are confusing. Not many individuals have experience with or know someone who has a spinal cord injury. You might not have ever seen anyone who uses a wheelchair for mobility and definitely have no knowledge of their personal habits of toileting and skin care. It is not even a situation that you see on television that is resolved in thirty or sixty minutes.

This month is dedicated to transition after paralysis. It will mostly focus on transitioning back to home and your life however do not stop reading if you have been dealing with paralysis for a while.  There might be some ideas that you can use now, even after you have been on your own for some time. Any of the ideas presented can be attempted prior to leaving the hospital but you can initiate them later as well. It is never too late to alter your plan and possibly improve your current situation. You can start a new transition at anytime or point your life in a new direction.

There is nothing quite like understanding you have a spinal cord injury or paralysis from disease. When you go through the stages of grief or mourning your loss of function, the first stage is disbelief. I think this is a protective mechanism by the brain to help you gain time to process the information about this reality. It is a challenge to learn new ways to care for yourself especially while just learning about your new situation. However, in the meantime, you do need to learn to care for yourself in the present time.

There are so many things to learn that it boggles the mind. Every single point that is discussed with you in the hospital, rehabilitation setting or at healthcare provider visits will be something that you will need to know as your progress. Yes, you will progress. There is so much information, that many rehabilitation facilities will provide a complete binder of information just about your unique care needs. Hang on to this binder. If you have been away from your rehabilitation setting for a while, find you binder and review it. You will be surprised how much helpful information it contains.

The flood of information while in the rehabilitation setting is so overwhelming that you might not have time to read and retain all of the information and instruction. Remember, you have been through a trauma or have been ill with your condition. Processing the details in the written instruction might be too overwhelming in the hospital. However, as you progress, take time to review the different sections of the written instructions. You will gain more understanding each time you read it.

As you progress, the details of the binder information will take on new meaning to your advancement. You might obtain new equipment that will change your abilities. The information in your binder will be useful for years to come. You can add medication information if your prescriptions change or if you add over the counter medication. New equipment information can be added to your binder. It really becomes a document all about you. It can be helpful at appointments, if you have a hospitalization or for the education new caregivers. There may even be a list of contacts for organizations that will be of interest to you once you are discharged.

If you did not receive a binder of information, do not worry. There is a tremendous amount of information that you can tap into online. Organizations such as the Christopher & Dana Reeve Foundation have details about personal care, connecting with others and resources to help make your life smoother. If you have a disease, be sure to check the organization that supports individuals with that issue. Use all of your resources but be careful about using and understanding the information. Websites of organizations provide general information. Personal websites contain helpful information but might be more opinion than fact. Check with your personal healthcare provider to be sure any information is right for your unique healthcare.

In the meantime, while in rehab go to any classes that might be offered about personal care. It can be a challenge to add this into your already packed schedule of therapy and personal care time, but information will be provided in a logical and formal way. You will pick up tips and timesavers that might not be noticeable in your daily care routine working with changing staff members. These classes are sort of an A to Z process of how to do different daily activities.

You might also be exposed to organizations that come to the rehabilitation hospital to introduce activities. It can be hard to think about canoeing when you are learning to propel your chair. If you are interested in an adaptive activity, collect their information and put it in your binder. You might be interested in participating later.

While still in the rehabilitation setting, there might be opportunities to connect with long term resources such as Vocational Rehabilitation. Voc Rehab is a government funded group whose purpose is to help you to become educated in returning to work. Not all facilities have connections with the area Voc Rehab but ask about it or call them yourself.

You can contact Voc Rehab after discharge as well. In many areas, there is quite an extensive waiting list to enter this program so early sign up is to your advantage. This organization provides assistance for getting you back to work. They will provide education for a new job, accommodations for your old job, a way to get to work and equipment for getting in and out of your home among a lot of other support. Put your name on the list so you can find out more about what they have to offer that will help you.

Often, either at the office of your healthcare provider, or in the rehabilitation setting, there will be brochures from various organizations. Become connected with organizations that have programs that fit your needs. Often these organizations will have local chapters that can provide information and perhaps assistance with care or equipment. Since spinal cord injury is a rare event, the Christopher & Dana Reeve  Foundation has a nation-wide peer support program to connect you with someone in your area that can help you navigate locally.

While in the rehabilitation setting, decide who you would like to assist you with your decisions. It is always good to have a second set of eyes and ears to help decide big issues. A spouse or child is most logical. You might have a trusted friend who can be with you through the process.

The person who you chose to be your second in command should know about your care as well. This person might be assisting you or providing direct care. Either way, you and someone else should know your care needs and how to accomplish them. Even if you are able to hire caretakers, they might not be able to come in bad weather or whatever happens. You need to know what needs to be done and all about your health status. This is not something that can be hired out. Should you become temporarily ill, say with the flu, someone else need to step in until you have improved.

Friends and neighbors will rally around immediately after your injury or with disease changes. Hospitalization is typically the societal clue that families might need some help. If anyone offers, ‘what can I do to help?’, let them. Find something for them to do. Bring a meal, mow the lawn, take the kids to school, wait in the house for equipment delivery, bring in the mail, put out the garbage. There will be a million things to do that will not require much work or knowledge about your personal care. If anyone volunteers to do something for you, welcome the opportunity. It cannot last forever and will be episodic but do it.

Many people will help others, but they don’t really know what you need. You might not know right now but keep a list of those who offer to help. You might need to phone a neighbor and ask. Be mindful of your request. Probably no one is going to become your full time cook but they will bring a meal. Church groups or organizations might have members bring food for a week or two.

For me, personally, one of the hardest things to do is to ask for help. I like to be the helper. The reversal in roles is tough. This is a point where you must forge ahead and use volunteers. A wise sage told me if someone ever volunteers for something, find something for them to do. He was right. People want to help, they just don’t always know how. You might not know what you need today but keep in touch with your volunteers. They will become your most valuable asset.

In the coming weeks, more information will be shared about finding caretakers, funding and organizing your medicine. Let us know your thoughts. You have the best tips of all.

Nurse LindaI'm online in this community every Wednesday from 8-9 PM ET to answer your SCI and paralysis related questions.

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