Long Term Phase

Congratulations, you have made it through the most critical phase.  Splurge a little; treat yourself to that two-day old piece of cake in the hospital cafeteria.  Seriously, take a few minutes to be thankful and then get ready for more hard work.  As you move out of ICU and on to the general floor it is because your patient is more stable.  But at the same time you will need to make up the difference in the reduction of around the clock attention your patient receives now that they are moving to a less acute setting.

Below are the next steps that may await you. 

• Neuro ICU – Many hospitals have a Neuro-ICU unit where patients may stay for a few days before going to the regular floor.  Ours had four beds with a central nursing station manned 24 hours a day.

• Neuro Floor – The Neurological floor is a regular hospital floor and has comparable staffing levels.  The nurses however are experienced and skilled with neuro patients.

• Rehab Unit – There are a couple of different rehabilitation unit options.  Many hospitals have an in-patient rehab unit.  There are also stand-alone in-patient facilities. Finally, many of these same facilities provide rehab on an out-patient basis as well.  

We won’t go into much detail regarding the Neuro-ICU separately since it is a relatively short stay and pretty much a continuation of the ICU status you have had.  The nurses watch the patients to make sure they are acclimating to the increased stimuli they are receiving and remain stable enough to progress to the floor.  You may notice a difference in the visiting hours but for our purposes here we will lump the Neuro-ICU and on the Neuro floor together.  Below are things to watch for.

 According to recent reports many of the medical mistakes reported are caused by human error.  You need to be the last line of defense to try to catch these errors for your loved one.  The hospital staffing shortage is real.  Nurses are overworked and sometimes nurses are pulled from one floor to cover a gap on another floor they may not be familiar with.  It is hard for hospitals and facilities to keep enough nursing aides.  Doctors work long hours and their handwriting really can be bad.  Residents still work extremely long shifts. Any of these factors can lead to a caring, dedicated but overworked staff member making a mistake.

 Question everything…  Know what medications your patient is receiving and when. Question the nurse every time as to what they are getting ready to give.  If something does not look right, speak up, and speak up before they administer it. If there are special considerations have the nurses post signs in the room if necessary.

 Make sure everyone continues to practice good hygiene and washes their hands every time they enter the room.  Keep an eye out for the early signs of an infection such as the temperature trending up.  As the head of our trauma team told us, the hospital is not a very good place to be if you are trying not to get sick.

 Make sure the therapy gets started as soon as possible.  It may start as just some range of motion exercises but the sooner, and more, the better.  The patient can get up in a cardiac chair even while on a ventilator.  Another thing to watch for is drop foot.  The therapists can use braces and splints to try to help control it before it gets too severe.  It is much easier to address earlier rather than later.  Make sure the therapy stays aggressive.

 The concept of neuro storms seems to be in debate in the medical community. Neuro storms were described to us as excess activity in the brain resulting in a “storm” of electrical activity.  This storm then interferes with the brain’s autonomic functions.  Other doctors told us there is no such thing.  Here is a link to an article that describes a similar notion that it calls Autonomic Dysfunction Syndrome and relates it to problems with the hypothalamus caused by the brain injury. (http://www.emedicine.com/pmr/topic108.htm) 

While I certainly can not argue the point from a clinical point of view, I can say that I have seen patients who exhibited symptoms that some doctors describe as neuro storms.  It is a very anxious time to watch as your loved one’s heart rate soars to 150+, their temperature spikes to the point where a cooling blanket is used to try to bring it down, and there is severe posturing.  Call it what you want, it scares the heck out of you. 

 Expect to start the very painful, but recurring, theme of one step forward, one step back.  It seems as soon as your loved one has a good day or two you get slapped back to reality with one of the many complications that are normal to brain injury patients.  There are so many systems involved with a brain injury that even the smallest things can become a big deal when the patients are so compromised.  Just try to keep an even keel so you can stay positive and keep your patient motivated.  This phenomenon can continue for a long while...  We are now in our fourth year and the pattern still continues.

 The severity of the injury will start to become better known as more time passes after the injury.  Some patients may start to progress more rapidly and emerge from their semi-conscious state.  Others will not show much progress.  So, if you are one if the lucky ones whose patient seems to be recovering quickly, thank God.  But now, start to pay close attention to the smaller things such as memory deficiencies or other cognitive or emotional impairments.  Speak with the neuro-psychologist and your medical team about anything you see out of the ordinary.  The neuro-psychologist may also want to do some testing.

If your patient is not so lucky and is not showing much improvement yet, don’t despair.  As a neurosurgeon explained to us, the doctors can tell from the MRI’s and CT’s where the damage is, but they can not tell how much of the damaged area’s previous activity will be taken over by other parts of the brain.  Some patients who have looked worse than others at this stage have ended up doing better in the long run.  Remember, each brain injury is unique so comparisons are very difficult.  

I think the question you really want answered is, “Is my loved one going to recover completely?”   In our opinion the only way to approach the situation is for you to assume, and plan, and believe that your loved one is going to fully recover.  If you go in with that mindset then you will continue to do everything possible to try to help them recover no matter how long it takes.  Then, if they don’t get all of their capabilities back at least you can sleep at night knowing you tried.  So far, we have not found a negative of this approach. 

 Continue to ask lots of questions.  Not only about the current status, but in an attempt to prepare yourself for leaving the hospital.  Watch and learn the techniques the nurses and therapists use in caring for your loved one.  There are tricks and techniques they use that can help when you go home.  We have found that they are always happy to train the family members and supervise as you practice.  Also, now that you are thinking a little more clearly, ask the neurosurgeon, or one of their residents, to schedule some time to sit down and review the CT’s and MRI’s and explain things to you in detail.

 Hospitals have staff dedicated to help in this terrible situation.  They may have a case manager or social worker who helps coordinate the care of your loved one.  These folks are great resources for helping you manage through the numerous decisions and choices you have to make. 

 Nurses Aides may be called different titles based on the facility but these folks often do most of the changes for incontinent patients and also do the turning for patients who are not active.  Make sure the aides do the turning on schedule and change the Depends when necessary.  Check to make sure they are doing a thorough job in regards to hygiene.  After a few times where the aides did not get our daughter clean enough after changing her, my wife started staying in the room to help and then later often did the changing herself.  Any deficiencies in these tasks can lead to problems with sores or infections.

 Some hospitals are more open than others to alternative medicines.  Our advice is to be open and be willing to try it.  We have found some very good success with things that some of our medical team scoffed at.  We personally have tried Healing Touch, Reiki, massage, acupuncture, and lots of prayers.

 Again, as hectic as everything is, make sure you take time for the rest of your family.  Children will need extra attention right now and hopefully you have some other family members that can pitch in and help give the needed attention.   

An example for us was that our son had just got his driver’s license and was chomping at the bit for a used car at the same time we were in the hospital with our daughter.  The thought of putting another one of our kids in a car was more than we could deal with at the time. Thank goodness my childhood friend and now my brother-in-law, was there and he took charge of the car shopping with my son getting him away from the hospital and spending some time focused on him.

As mentioned before, there are multiple options when it comes to a stay in a rehabilitation unit.  Many hospitals have an in-patient unit and the natural flow is from the neuro floor right in to the rehab unit.  There are also some stand-alone rehabilitation centers that are not associated with your hospital. Some of these units have developed national reputations for their expertise.

 The goal of these rehab units is to maximize the patient’s current abilities and to help them learn coping and compensation techniques for any deficits they may still have.  Your insurance coverage will again come into play to determine what rehab options are available to you.  What we have seen is that you only get so much in-patient rehab time so make sure you consult with your doctor so he or she can help you maximize the rehab opportunity. 

Depending on where you live you may have a number of rehab units available to you.  In our opinion, experience does matter.  Each type of injury does have its own nuances and the more patients the facility treats with a similar injury to your own, the better.

 Check to see what equipment the facility has.  Having the latest equipment is not necessarily an indicator that the therapy will be better than any other place.  But, in my mind it might indicate that the facility has a staff that is being aggressive and staying up with the latest industry techniques.  Also, pay close attention to what equipment they use with your patient so you know what you will need to try to duplicate for your rehab set-up at home.  

 A couple of the rehab centers I have been in have areas where they have duplicated parts of the home environment to help patients re-learn some of the skills needed.  One particular facility had an apartment set up with a bedroom, a kitchen, bathroom, and living room.  Patients practiced cooking or just getting in and out of bed in an attempt to further prepare them for their transition home.   

Each patient’s condition will vary but it is likely at this point that your loved one has not been active for weeks now.  They come into the in-patient rehab center and they are expected to actively participate in therapy.  The schedule will probably include all three disciplines, Speech, OT and PT, twice a day.  It may take some time for them to ramp up their endurance.  You can help by being there with them during therapy and helping to motivate them, even when they are tired.  A key to continuing in rehab is the ability to make progress and meet the goals set.  Again, you only get so many days, so, you want to help maximize every day and every therapy session.

 Part of the goals for each therapist will probably include goals around training the family.  Make sure you participate and feel comfortable with the tasks.  The more you actually do hands-on the better.  It is one of those things where it seems simple at the time but when you are home and trying to do something like a transfer by yourself, it is scary. 

For some patients, once they are up and actively participating in therapy they make rapid advances.  Not to say that there may not still have deficits, but, considering where you were when they were in the ICU for instance, this is great. 

If your patient has been more severely injured the advances will be smaller but you still may find yourself pleasantly surprised.  As we have said before, the more severely injured the patient, the smaller the increments need to be as you measure improvements.  Remember, it was not very long ago that you probably did not even know if they would survive.  

 We recommend going to as many of the therapy sessions as possible.  You can help motivate your patient and learn the therapy techniques you will need to continue at home.  The staff will let you know their particular visitation rules.  We were always encouraged to participate as much as possible with our daughter. 

Some rehab units have patient review meetings where the entire team, including the family, gets together and discusses each patient.  They discuss how the patient is progressing towards their goals and any modifications to the plan.  For you, these meetings are key as they will decide if the patient continues on in the rehab program.  So, you definitely want to be there and participate.

 The therapy sessions in the hospital tend to be about forty-five minutes in length.  While we had an overall good experience, the quality of the sessions can vary based on the particular therapist.  Most therapists were ready and worked quickly from start to finish.  A few were late and then took much of the time just preparing for the session.  We were sometimes lucky to get ten minutes worth of exercise.  Added into the mix are the logistics of the transporters getting the patients from session to session on time.  So, the message is to stay on top of things and if you do not feel you are getting a full session, ask for more and, if necessary, speak with the doctor.  Remember your rehab days are a scarce resource.    

 Challenge the rehab team to take an aggressive approach.  Ask the doctor what are all the options available.  What about gait training, standing frame, botox injections, or serial casting?  We believe sometimes it comes down to individual therapists or doctors and their styles.  Let the doctor know that while you want everything to be safe, you do want to be aggressive.

 Take advantage of the expertise of the physiatrist and the therapists to help plan the equipment you will need and help develop a plan of care after you leave rehab.  The OT for example, can help explain what you need to do to make your home more accessible.  They can recommend things like special silverware or plates for eating, or games to buy that will reinforce movements they want your loved one to practice.  The PT can get your patient fitted with a wheelchair if necessary.  The doctor will set the overall direction and will write the prescriptions for the specific items the therapists recommend.

 Extend the training to others in your family who may be helping you when you go home.  If you are learning how to do transfers, teach the others in your family how to do it as well.  In fact, practice on each other.  It will take away the anxiety that they will have in practicing on the patient.  Have them attend some of the therapy sessions with you.

When the time comes, the social worker in the hospital will be working with you regarding next steps in your loved one’s care.  The route you take will be mainly driven by the medical status of your loved one.  Below are some of the options: 

• Sub acute facility

• Nursing home

• Home

The timing as to when to leave the hospital is more art than science and may make you feel uncomfortable.  Your first instinct may be to resist leaving since the change to a new facility is unsettling by itself.  Second, it is only natural to have developed a comfort level with the hospital and the staff.  Third, you have probably never been in this situation before, so it is going to be very difficult for you to gauge whether your loved one is ready to be released or not. 

 On the flip side, as a doctor told our family, one of the worst places to be when you are ill is in the hospital as many of the toughest germs live there.  Plus the change can be good, the new facility may provide some new ideas and new enthusiasm and a welcome spark. 

Unfortunately, there are other outside factors involved in the decision process that makes it even harder you to feel comfortable.  Hospital patient levels fluctuate from day to day and what we have seen is that as patient levels rise, pressure may be put on the staff to clear space on the floor.  While I am sure they would never endanger anyone, I think sometimes people do get rushed.  Another factor is your insurance company.  If your insurance company is putting pressure on the hospital to get you released you may again be rushed.

 Hopefully, you have developed a good relationship with your doctor so that you can feel comfortable with their recommendation.  If you do not think you are ready to leave and your doctor agrees, do not hesitate to fight the fight to advocate for your patient’s best interest.

 If more structured care is necessary you may be directed to a sub-acute facility or a nursing home. 

A sub-acute facility is better able to handle the more involved patients, especially those still on a ventilator.  They typically have more highly trained staff than a nursing home.  In our case, we found a great facility that rented floor space in a local hospital.  This set-up was ideal as one of our primary concerns was the facilities’ capabilities in an emergency situation.  The sub-acute facility had an arrangement where the hospital’s trauma team would respond to a code situation on the sub-acute floor the same as they would on their own hospital floors.  The other facility we were considering was a stand-alone facility and their emergency response was that their staff would treat the patient while they called 911 and waited for an ambulance.

 Below are some suggestions in making your choice.

 This has got to be our number one suggestion.  Talk to everyone you can, get as many opinions as you can, but you have got to actually visit the facility and make sure you are comfortable there. 

One of the most important criteria should be is there enough staff.  Ask what the patient to staff ratios are for all of the disciplines your patient requires, e.g. nursing, respiratory therapists, nurses aides, doctors, therapists.  Benchmark the answers you get to the ratios from the other facilities you are considering.  Compare the ratios to the hospital but keep in mind that they will probably be higher as these facilities are less acute than the hospital. 

 Remember, if your patient is on a ventilator, the number of respiratory therapists is critical.  You want to make sure the vent alarms are answered promptly and the maintenance care is done timely.  Finally, you also may consider visiting the facility off-hours to get a feel for the staffing levels during all hours of the day.

 Check out the rooms where your loved one will be.  Are the rooms clean?  Are they large enough?  Do you want private or semi-private?  Do you feel comfortable that there are adequate safety measures and equipment in place? 

Also check out the facilities they have for therapy.  Can they provide the level of therapy you desire in all three disciplines, Speech, OT, PT?

 Are the visiting hours lenient enough for you?  If it is our family, can someone stay in the room 24 hours a day, every day.  Do they have an arrangement with a local hotel for lodging?  What about a cafeteria or restaurants nearby?

 Finally, we suggest you do not transfer in to a new facility on the weekend.  Typically, the support staff and may be even the floor staff are reduced on the weekend and it is not the way to start your stay at the new facility.  We have heard more than once that this has caused problems.  The pushback you will get will come from the hospital you are currently in who are trying to clear space on the floor.  Try to partner with your doctor to help convince the hospital and the insurance company that you need to stay until Monday.    

 The sub-acute facility is considered to be a step-down from the level of care provided in a hospital.  This is a good thing as it means your patient is more stable and does not require the higher hospital level of care.  At the same time you need to continue to be vigilant in watching for medical errors and stopping them before they happen.

 You may have some mixed feelings as you move to this new facility.  There may be some trepidation as you leave a situation in the hospital that you had developed a certain level of comfort.  You may feel some sense of despair that others who you were in the ICU and on the neuro floor with have progressed to a rehab unit or even home while your loved one is not progressing as fast.  At the same time, you may get a new burst of energy from the new staff and some new approaches.

 If your loved one is on a ventilator you need to work with the doctors to understand their plan for weaning them off the ventilator.  As I understand it, the longer a person is on a ventilator the more dependent they become.  For our family, weaning off of the ventilator was our number one goal.  Our doctor in the sub-acute facility put together an aggressive plan and weaned our daughter after other doctors in the hospital had said she would never be able to come off of it. 

 They slowly reduced the work the ventilator was doing but took care not to tire her out.  Our daughter did have one quirk in that after a certain level the lower they continued to take the ventilator settings her oxygen levels also went down. Not a good thing.  What did work was going down to a certain point and then stopping it completely.  (Actually the setting they used is called CPAP, which allows the person to breathe all on their own but provides emergency protection in case they should stop.)  They then let her build up her endurance on CPAP until she could breathe on her own longer and longer without getting too fatigued.  Getting rid of the ventilator was a huge victory. 

Most sub-acute units will have therapists available.  Make sure you speak with the doctors and therapists and let them know you want to stay aggressive.  Our first day in the sub-acute facility the physical therapist came by to do his initial assessment.  He said he thought we should get my daughter up sitting on the edge of the bed.  My response was fine, that is a good goal to shoot for.  After all, my daughter was on a ventilator and barely had any movement at all.  His answer was no, I mean tomorrow.  And they did. 

 Mentally you have to steel yourself that you are in for the long haul with this injury.  The fact that you are in a sub-acute facility probably means that your patient was more severely injured.  It means the road is going to be longer and harder.  Well, that is fine.  You and your loved one have fought to get to this point and you can just keep fighting and keep making steps toward a recovery.  Remember to keep everything positive and keep marching to your goals.

 You probably had built some relationships and friendships with the staff in the hospital.  Now, you need to do the same in this unit.  Again, there is a lot to learn and this staff will also be glad to help you.  Your next step may be home so make sure you ask questions and let the staff supervise as you learn some of the tasks you may need to do at home. 

 Nursing homes do offer viable alternatives for many trying to address the question of, what’s next.  However, capabilities do differ among nursing homes so you will really need to do your homework.  What we found was that the ventilator proved to be an important selection criteria.  Some nursing homes did not accept patients on ventilators while others accepted only a limited number.  There are also differences in the level of therapy that is offered between nursing homes that need to be evaluated.

 Other criteria may be location, insurance coverage, and open beds available.  If you have a larger pool to choose from in your area you may consider seeking nursing homes that have other patients similar to your own.   

Below are some suggestions in making your choice. 

 This has got to be our number one suggestion.  Talk to everyone you can, get as many opinions as you can, but you have got to actually visit the facility and make sure you are comfortable there. 

 One of the most important criteria should be is there enough staff.  Ask what the patient to staff ratios are for all of the disciplines your patient requires, e.g. nursing, respiratory therapists, nurses aides, doctors, therapists.  Benchmark the answers you get to the ratios from the other facilities you are considering.  Compare the ratios to the hospital but keep in mind that they will probably be higher as these facilities are less acute than the hospital. 

 Remember, if your patient is on a ventilator, the number of respiratory therapists is critical.  You want to make sure the vent alarms are answered promptly and the maintenance care is done timely.  Finally, you also may consider visiting the facility off-hours to get a feel for the staffing levels during all hours of the day.

 Check out the rooms where your loved one will be.  Are the rooms clean?  Are they large enough?  Do you want private or semi-private?  Do you feel comfortable that there are adequate safety measures and equipment in place?

 Also check out the facilities they have for therapy.  Can they provide the level of therapy you desire in all three disciplines, Speech, OT, PT?

 Are the visiting hours lenient enough for you?  If it is our family, can someone stay in the room 24 hours a day, every day.  Do they have an arrangement with a local hotel for lodging?  What about a cafeteria or restaurants nearby?

 Finally, we suggest you do not transfer in to a new facility on the weekend.  Typically, the support staff and even the floor staff are reduced on the weekend and it is not the way to start your stay at the new facility.  We have heard more than once that this has caused problems.  The pushback you will get will come from the hospital you are currently in who are trying to clear space on the floor.  Try to partner with your doctor to help convince the hospital and the insurance company that you need to stay until Monday.   

 A lot will depend on your particular situation.  Is the nursing home nearby?  Are you able to visit daily, weekly?  Whatever your situation you need to make sure you satisfy yourself that your loved one is getting the care they need.  Work with the staff so you get the information you need.

It is normal to feel a sense of loss in all of this.  First, you have lost the interaction and companionship of your loved one, at least how it used to be.  Now, that loved one is having to stay away from home in a nursing home, furthering your loss.  So, expect the feelings but understand that you need to continue to be strong and help your loved one fight to get better.

 You are going to be more dependent on the staff in this environment so it is important that you establish good relationships.  There are many good people who work in nursing homes and share your concern for your loved one.  You need to speak with these folks and let them know you appreciate their care.  It is a tough balancing act interacting with all of the personalities and getting what you need without irritating the staff or them irritating you.

 Work with the doctor to put together a plan of care for your loved one.  Make sure it meets your needs as far as therapy and rehabilitation are concerned.  Make sure you receive status reports as to the progress that is being made to the goals.  Getting a written plan will help both sides to come to agreement on the expectations for care for your loved one.  

 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.

 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. 

 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.

 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.

 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.   

 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.   

 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.   

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. 

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.

 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. 

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. 

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.

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.   

 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.

 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.

 This is a very important point.  It is pretty common for injury victims 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.            

 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.

 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.

 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.