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Leaving - For Home


 
 For our family, there was never a question about where our daughter would go.  We wanted her home with us and we felt we could provide quality care.  Plus, we felt strongly that being home would provide a more motivating and comforting environment for her to recover in.  
 
However, there are numerous things to consider before making a similar decision.  Some are very practical.  Do you have the physical strength to do the tasks that may come into play caring for your loved one? Do you have insurance or qualify for other funding that will provide help?  Are you ready to take on one of the most difficult jobs you have ever had?
 
 Again, for us there was no question.  My wife had been living with my daughter in her hospital room for the past six months.  The nurses had been working with her teaching her to care for our daughter.  By the time my daughter was ready to come home, my wife was already doing most of my daughter’s care.  The hospital’s Occupational Therapist worked with us on some of the other skills we needed such as transfers to the wheelchair and to the car.  Below are some suggestions if you decide to try this option.
 
 

Do A Trial Visit


 
 A trial visit is a nice way to ease into the transition home.  Our doctor, a physiatrist in charge of the in-patient rehab unit, recommended and approved a trial visit for us.  We brought Ashleigh home with us on Thanksgiving Day and it was great.  There were flowers and balloons and lots of friends and family.
 
At the same time, there were numerous times throughout the day that we thought “this is scary”.  We were so tired of the hospital and ready to go home that we had not really thought about what a big step this was going to be.  We were very anxious, but at the same time, it sure felt good. 
 
 

Accessibility of the Home


 
 The trial visit is your first real insight in how suitable your home will be for bringing your family member home.  Pay attention to all of the problems you encounter.  Do you need a ramp? Are the hallways and doors adequate?  If necessary, do you have room on the first floor to convert into a bedroom?  What about a bathroom? 
 
 The Occupational Therapist from the rehab unit came to our house and did an assessment as well.  She gave us insights as to the structural issues and also put together a list of equipment we would need.  The doctor took the list and wrote prescriptions for the home health equipment company to fill.
 
 

Medical Equipment


 
 Your patient’s condition will of course determine what equipment is necessary but some common items include; a hospital bed, commode chair, tray table, or food pump.  If your patient cannot speak a pulse oximeter is a great way to monitor their status.  We use the heart rate to tell us if there is any pain or discomfort.  A suction machine is another good tool.  One piece of equipment we swear by is our air mattress from KCI.  We have had no problems with bed sores and attribute that success to the air mattress.
 
 

Medical Supplies


 
 Have your doctor write prescriptions for all of the supplies you need before you leave the hospital.  Pay attention to what the nurses use and get a prescription for all of the items you see as useful.  Gauze pads, cotton swabs, toothette swabs, suction swabs, refills for all of the equipment, etc.  Insurances differ but most of these items should be covered.  Remember when dealing with your insurance company that it is a lot cheaper for them for you to be at home so push back if they balk at providing you the supplies you need.  

 

Emergency Procedures, Safety Equipment


 
 Safety at home should be your first priority.  Make sure you have the proper training and equipment to make your house as safe as possible.  The hospital staff will be glad to help train you.  Have an emergency kit by the bed.
 
 Understand the specific risks to your patient and work with your doctor to have the equipment and medicine on hand.  Have the doctor devise a care plan for you to follow.  For example, our daughter has had some seizures so we now have two types of medication to give in event of a seizure with instructions on when to give the first drug, when to give the second drug, and when to call 911.  After her last seizure we added an oxygen concentrator.  Reassess your situation on an ongoing basis.  
 
 Other steps include calling the Fire Department and give the location of where you loved one will be sleeping and the fact that they will need help getting out of the building.  Have the doctor prepare a letter that contains the pertinent information for you to take should you go to the ER.  If your family member is on life support equipment, call your utility as they often have special programs. 
 
 Another piece of equipment we purchased was a closed circuit camera.  We have it set up to monitor our daughter while she is in bed.  We placed the TV monitor in the kitchen so if we are trying to clean up in the kitchen while our daughter sleeps we can keep an eye on her.  You can also keep an eye on aides or therapists.  (We purchased ours on the Web from X10.com.  They also have some home environmental controls that may be of use)
 
 Even if you don’t have life support equipment, you may want to consider purchasing a generator to use in case your electrical power goes out.  For example, our pulse/ox, food pump, and suction machine have batteries but they only last a few hours.  Our air mattress has no battery back-up at all.  We purchased a smaller gasoline powered generator that can power all of the equipment in my daughter’s room and we use a wood stove as a back-up heat source.  If you have the funds, there are whole house generator units available that are very nice.  
 
 

Home Health


 
 Your insurance will be the key as to what you can do with home health care.  Each insurance plan will have different policies and limits to follow.  We have a nurse once a week and all three disciplines of therapy coming to the house.  A nursing aide is also be part of our plan of care.  We have a family doctor that makes house calls as well. 
 
The key to therapy with home health agencies is to make sure the therapists set reasonable goals and can show good progress towards those goals.  That is important as most plans do not cover custodial care so when the progress stops so do they.  The therapists must submit paperwork that is suitable to the insurance company and fits within their guidelines for care.  At the same time, they need to be flexible to compensate for the ups and downs that seem to go along with recovering from a brain injury.   
 

Other Assistance


 
See what other assistance is available to you.  Medicaid and Medicare may be an option.  We have a great program in this state called Medicaid Waiver that provides assistance for people to stay at home who might otherwise need to be institutionalized.  Social Security has multiple programs that may apply.  Our county office had a computer program that checked all of the available programs with one application.  Also, check with your county MRDD organization to see what programs they offer.  The school systems offer special programs for disabled students.  Even the library has special programs such as delivery service. 
 
 
 
 

What To Expect


 
 
 

Sleep Deprivation


 
Taking care of your loved one at home is a tough task.  If they are incontinent you need to change them a couple of times throughout the night.  They may have other medical needs that require attention throughout the night as well.  You may need to turn them every few hours.  With medical equipment you may have alarms that go off at times through the night.  If you are a person who can’t function without eight, uninterrupted hours of sleep you may have a problem.
 
 

Time Management


 
 Everything takes much longer than you would like.  You want to do all kinds of therapy and work with your loved one but there does not seem to be enough hours in the day.  With all of the tasks, and the therapists, and the doctor’s appointments somehow the days are packed.  Try to concentrate on the important things that will help them get better.  And remember, sometimes it is more important to just sit and hold their hand rather than cleaning or vacuuming the house.   
 
If you were one of those people whose house is always perfect you have to understand that stuff is now secondary.  So, forget the housework. Concentrate on the important job of caring for your loved one.  The house is messier, who cares. 
 
 

Isolation


 
When a person is disabled it is easy to start to feel isolated.  For one thing it is very difficult to get out into the community.  For example, it takes us about an hour to get our daughter ready to go out the door.  Then, she has a limit of being in her wheelchair of about four hours before she gets tired and her tone kicks in.  Then the lack of accessibility limits your choices when you do venture out.  Most homes are not wheelchair accessible.  Stores in the mall that are supposed to be ADA compliant have racks jammed together so tight that it makes it almost impossible to navigate.  In the end, it is often just easier to stay home.
 
 
We were warned that it was inevitable that my daughter’s friends would end up dropping out.  We were told this phenomenon was very common among teenagers as being around someone severely injured gets too close to the sense of invulnerability that teens have.  Rather than facing that fear they instead fade away.  While this phenomenon may be well understood, from our perspective, it still sucks. 
 
 

Battling the System


 
When your loved one is in the hospital or other facility they have people responsible for working with the insurance companies.  Now that you are home, you get to deal with your insurance company and the other agencies.  There are constantly issues to deal with.  The insurance company wanting to cut back services, vendors not being paid, items being submitted with the wrong coding.  This is one of the most trying areas and adds tremendous stress to this already stressful time of life.  You again need to put on your patient advocate hat, make that a hard-hat, and fight to make sure the patient’s needs are being served.
 
 
 

Tips From One Family To Another


 
 
 

Accept Help


 
 
Accepting help may not feel comfortable to you.  Or you may not feel you need it right now.  My advice is to take the help that is offered.  Even though you probably could get by without it you have to remember this is a marathon, not a sprint.  Pacing yourself is not a bad idea.  If you are not sure what you need them to do just let them sit and read or talk with your patient.
 
It is also a time when you might use the offer to help train others in your loved one’s care.  It is important that other friends and family feel comfortable in stepping in for you.  After all, if you come down with the flu you won’t feel up to caring for your loved one nor should you risk being around them.  By now all of the tasks may seem second nature to you but they may be as scary to your family members as it initially was to you.  It takes a little bit of faith to let go, but it will be better for all of you.  
 

Take Care of Yourself


 
 As you prepare to leave the hospital, this is probably the piece of advice that is the most widely given… and the most widely ignored.  You just need to remember that your loved one is depending on you and chances the recovery is going to take much longer than you secretly wish in the back of your mind.
 
 The piece of advice I give my wife, that she routinely ignores, is to sleep when my daughter sleeps.  Instead, she will use that time to try and catch up on her other chores.  Then, if our daughter has a bad night, my wife ends up running on a couple hours of sleep.  Not bad if it is a couple of days but after three years that is not something you can sustain.
 
 You also need to get some time outside of the house.  This is where your friends and family members can step in and help for an afternoon while you get out.  As stated earlier, let the housework go a little.  You need to make sure the things are clean for caring for your loved one, but, worrying whether the bed upstairs is made is secondary now.
 
 

Take Care of Other Family Members


 
 You also need to continue to carve out time for your other family members.  Again, this is where you could accept some of those offers for help to let you spend a little special time with each.
 
 

Stay Positive, Motivated


 
 This is a very important point.  It is pretty common for injury survivors to become depressed.  Coping with the injury, the loss of function, the isolation, the uncertainty regarding their recovery all play a role.  Make sure you keep their doctor informed of any problems with depression. 
 
 You also have to be their number one cheerleader and the positive motivator in their life.  It is easy to get bogged down by the very slow progress but step back from the trees and look at the big picture.  When we have family members visit from out of town who do not see our daughter regularly, we are always surprised by their amazement of how much better she is doing.  When you are with someone day to day you can lose sight of the improvements.
 
 Another thing we do every day is to try and start our daughter’s day off with a laugh.  We sing, we dance, we do all kinds of goofy things to try and get a laugh.  Thank goodness there are no hidden cameras to capture our dorky routines.           
 
 

Try To Keep the Rehab Schedule


 
 Our goal is to recreate the schedule we had in the in-patient rehab unit at home.  In the rehab unit our daughter worked up to two sessions per day of each therapy; speech, OT, and PT.  She was up and in therapy eight hours a day. 
 
 So far, we have not made it.  First the only way to get two sessions of therapy per day is for you to do the second ones as insurance will probably only pay for one session.  In fact, it is a major fight to get more than three days a week.   Getting all of these things in is a major trial.  There always seem to be something that comes up.  But, we keep trying.
 
 

Stay Aggressive


 
 Keep your home health rehab team aggressive.  For example, we have had some therapists come in and do some light passive range of motion exercises and call it a day.  Other therapists come in they do standing in standing frame, bouncing on physio ball, and active exercises.  If you are not happy with your therapists, ask for a change from your agency.  If necessary, change agencies.  The key is to have a good doctor in charge who sets the higher level goals for the therapy team to follow.
 
 

Keep A Daily Chart


 
 Finally, we have a daily chart created with Microsoft’s Excel that lists the hours in the day and has the dosage and timing for all of the medications.  We also use it write down other events such PRN medications, temperature and blood pressure readings, and any comments we want to capture.
 
 
 
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