After the stroke victim has been in the hospital long enough so that their insurance can declare them a survivor - and a medically stable one at that - it will be time to move on to rehabilitation. How does one decide where to go to get the best possible rehab?
If given a choice between inpatient rehab, outpatient rehab or even "in home" rehab, most caregivers who have been there, done that, will advise you to not even attempt outpatient rehab until the patient has been through at least some inpatient. The period after hospital discharge is stressful enough without having to deal with the additional stress of transporting a patient who isn't very mobile and may be very weak to rehab several times a week. More than likely this is a decision that is driven by one's insurance coverage. However, inpatient rehab is worth fighting for with the insurance company, in the event this is not initially offered. Often just a personal meeting with the survivor's primary care physician, neurologist and/or physiatrist is all it takes to enlist their help in making this recommendation become reality. If insurance continues to refuse an inpatient program, the next step to fight for is in-home rehab, when therapists come to your home, making early therapy much easier on caregiver and patient. This is a temporary solution until the patient gains sufficient recovery and strength to more easily get to outpatient rehab.
A professional photographer once advised that to obtain the best possible photos, you just have to buy the most expensive camera. The pricier the lens, the higher quality the resulting photos. We're here to tell you that insurance providers and doctors don't shop that way for rehabs. Insurance will go for the facility with the lowest price (you get the picture) or the facility that will cut them the best deal (sometimes the one most desperate for business). And some doctors have been known to steer patients to the facility in which they have some sort of financial interest. So it's important to do your own research to get the kind of results that will please you, and then fight insurance to pay for it. If insurance coverage is through one's employer, one effective measure for bringing pressure against a stubborn insurance company is to contact the human resource director or union representative at work. Insurance providers tend to listen more carefully when the one who is purchasing large quantities of their product starts talking.
So in the end, the rehabilitation facility you select may not be picture perfect, but you should have no doubts that it's the best available place for your loved one to start down the road to recovery.
The first determining factor of the selection process is where you live. In some areas, or if you are part of a strictly "in-house" HMO, there may not be any choice. In that case, you go to ABC Rehab, no decision necessary. However, if upon planning the hospital exit, you're given a paper to sign saying you weren't coerced into selecting ABC, a big light bulb should illuminate over your head. It's one of life's "Aha!" moments. Alternatives must be out there!
As with all else related to stroke and all catastrophic illness, keep asking questions. It's hard to have any sort of medical experience without running into several others whose brother-in-law had the same thing. So start talking up a storm until you've started a tornado of information whirling about you. A good place to start is with medical personnel. Ask any doctor or nurse, specialty doesn't matter: If you had a stroke, where would you want to be sent for rehab? A pattern will emerge, and it may be negative: "Anyplace but ABC. Wouldn't send my dog there."
While chances are you'd buy a doghouse without too much research, would you send your kid to a school you never visited? Buy a house from a brochure? Personal visits to rehab facilities are an absolute necessity. In addition to the basic personal observations - like, is it clean? - other questions should be asked:
There's a lot to be said in favor of geographic convenience. If visitors are important to the patient, don't send them far from their visitation network. Driving into a big city may not faze some folks, but to many others, especially older people, you might as well have placed the patient in the middle of Broadway and Times Square. Nobody's gonna drive there no how no way. However, if we're talking the Mayo Clinic versus Podunktown Rehab, go to the superior facility and the heck with visitors.
Still, for some, the insurance company will erect brick walls everywhere you turn. Once you have fought the good fight to no avail, certainly you must take "something" if it is offered, over nothing. And, while money talks, most of us do not have it (often heavily in the throes of the financial stress that follows in the wake of major illness) and ultimately have to accept what insurance will pay for. Do not despair! Unless a rehab facility is completely incompetent (unlikely, given board certification requirements), basic care and therapy will be provided. But you will probably have to work a little harder, and not be able to rest quite as easy. If the facility is not of your choosing, it does mean you may want to be there more frequently, or solicit the good favor of a dear friend or relative who can share the load of monitoring the quality of care. And - who knows? - little gems ...a marvelously talented or compassionate therapist, e.g., can be discovered in the most unlikely of places.
And, finally, there is one more thing to keep in mind if you feel insurance is not providing what you had hoped. This isn't a reason to lay down and give up hope. Stroke recovery is only part therapy. Sure! - getting excellent therapy, with the most progressive techniques available, is what you want if you can get it - and, yes, you should bother to fight for it. It will, certainly, improve the strokee's chances of greater physical and mental recovery. But, if this isn't in the cards, a great deal of stroke recovery happens anyway, as some pathways in the brain begin to rebuild themselves in a slow, natural process. Remember our mantra: no two strokes are alike? Until there are medical advances that actually enable the brain to build new pathways around the destroyed tissue, therapy is not the be-all-end-all. The best therapy in the world generally cannot help most stroke survivors recover completely ...and the most mediocre (or even no) therapy won't prevent some stroke survivors from recovering a great deal. You simply do not know until time passes (sometimes months, sometimes years), and recovery potential becomes more clearly evident.
There's an organization named CARF (Commission on Accreditation of Rehabilitation Facilities) that will do the homework and answer that question for you. It's like the Good Housekeeping Seal of Approval for Rehab Facilities. Except CARF seals of approval aren't so prevalent. CARF doesn't give out its seals capriciously. It's very difficult for a rehab facility to get CARF accreditation. And if they succeed, you can bet your gait belt that they'll display the framed citation in a prominent place and stamp "CARF Accredited" all over their literature and stationery. Make sure the accreditation is for the current year and not left over from 1986, because it's even harder for a facility to get reaccredited. Also make sure the accreditation is for Adult Rehabilitation as it may be for some other program like Reentry into the Job Market. A hospital that offers both in- and outpatient rehab may get an accreditation seal for one and not the other. The framed citation will list the programs included in the accreditation. A facility that does not have CARF accreditation may or may not be a bad one, but one that does have it is certain to be a good one. Reach CARF at www.carf.org or 520-325-1044.
You've selected the facility you feel is a good match to your strokee, and they move in. One thing to keep in the back of your mind is that this is not an irreversible decision. If things don't work out the way you thought they would, remember that the door that you walked in through also has the capability to let you back out.
At the beginning, it's very important for the caregiver to be there to make sure the patient settles in well and has some understanding of the routine. Meet every person that has a role in your loved one's care. Introduce yourself to each therapist and sit in on the sessions. Have the therapists explain exactly what they're doing and why, and then ask how you can help and what activities you can do during "off-therapy" time, weekends or during visitation. It's important to establish your position as someone who wants the best possible care for your patient and one who is willing to help get it.
Depending on your loved one's condition, it may be difficult for them to verbally communicate needs and pain to the therapist. For the first few sessions it may be up to you to devise a communication method between therapist and patient to signify what hurts and the degree of pain or displeasure. This may be a hand, finger, nod or an eyebrow signal. The method of communication doesn't matter as long as there is a dialogue that is understood. You know the patient best; in your role as advocate, it's to everyone's advantage to make sure the therapists get to know them, their physical discomforts and emotional needs as well.
Carry that symbol of authority, THE CLIPBOARD, and take notes.
|1 p.m.||Individual PT scheduled.|
|1:05||Inquired as to whereabouts of therapist. No explanation can be given.|
|1:10||Supervisor makes calls. "Therapist is on the way."|
|1:22||Therapist appears, looks around for equipment.|
|1:30||Area is finally ready for therapy. Patient asked to do 12 leg lifts. Can patient count to 12? Can patient do leg lifts? Does patient even know what a leg lift is? Therapist leaves before finding answers.|
|1:40||Therapist returns, wakes up patient, asks if 12 leg lifts have been done. "Yes" is the reply. "No" should have been the reply.|
If these are the sort of notes you're taking, and the therapist is acting in that manner while you're obviously taking notes on a clipboard, imagine what happens when you're not there. That's why you're there. As soon as you realize what you are documenting is a negative trend, do something about it.
Determine if the problem is with one therapist or aide and request a change from the supervisor. Sometimes there is a personality conflict between patient and therapist. While you may not be qualified to judge a therapist's technical expertise, you certainly can tell if they're condescending, impatient, belittling, apathetic, cruel, negligent, heavy-handed, harsh or just plain gives up on the patient. You should be aware that many therapists are necessarily "tough" because they must be, to motivate an otherwise unmotivated patient - and do try observe enough to sort this out first. And, often, a patient will express a great dislike for a therapist that drives them hard, and challenges them. But, the matchup between patient and therapist has to be a productive one. This isn't a marriage - it's more important than that! A life is at stake! Some patients do better with male therapists rather than female (men patients who have an abundance of women running their lives especially may need a male presence). Always have good documentation to back up your request for a change in personnel.
If your documentation shows that the whole place is operating at substandard efficiency, run to the nearest phone and demand an audience with the Executive Director of the facility. Remind them and yourself again how the door to the facility works both in and out. If there's no other alternative facility to threaten with, threaten to go to the one with the big bucks: the insurance provider. Insist on a breakdown of billings for all services rendered. Make sure you have a log to back up disputes: show that the one hour billed was, in fact, 20 minutes. It can turn into an unpleasant job, but you'll need to dig your heels in and fight for what you know to be right.
Your loved one deserves an opportunity to regain as much as their developmental functions as they can. Good therapy will help maintain and retrain a stroke victim's body, spirit and mind, including muscle tone, flexibility, coordination, motor skills, cognition and speech. A good rehabilitation facility should be committed to make this happen. You may have to remind its administration of these basic rights and that you intend to do whatever is necessary to obtain them. Your "right" to do so is granted by virtue of the fact that you love the person who can't fight for himself. A good rehab facility has a staff that will listen to the caregiver and ask your opinions. You are the only one there who knows who and what the patient was before the stroke.
One thing to keep in mind is that even if you found the finest rehab facility with the very best therapists in the world, progress in stroke recovery is usually measured in very small increments. This is not a fast process. Walking, talking, moving the affected arm do not come overnight even if the therapy is timely, and the therapist works every minute of their allotted time. Individual results often vary. Reread Chapter 1. Two strokes are seldom the same. Unfortunately, there is no published timetable available to determine the degree of recovery and when it's going to come. Recovery doesn't end at three weeks, or three years. It continues for a lifetime. And if you think it's slow now, guess what? It's going to get slower with time, so rehab is the time to utilize the staff and the doctors and to "make hay while the sun shines." Use this time wisely and to the best advantage of the patient. Make sure everyone around your loved one thinks and acts in a positive manner. There isn't a place for negativity in this scenario. Try very hard not to make comparisons to others in therapy. Make others (friends, relatives) aware as well! - that every brain recovers at a different rate and to a different degree, no matter how motivated the patient, how much therapy is provided or by whom. Don't ever allow the word NEVER to be uttered.
If your patient is receiving pain or muscle-relaxing medication, make sure that it's given at a time when it will most benefit therapy. It certainly is easier to do physical tasks when one is pain-free, so be sure that those medications aren't just dispensed at a X o'clock without regard for when the therapy will take place. No, the doctors and nurses don't always think of that.
Because progress is so slow, it's very important to continually encourage the patient to work hard and not give up. Celebrate the improvements, no matter how dinky.
Get a BIG calendar like the ones used as desk blotters. Circle the date of the stroke and write in all milestones when they are achieved: first solid food, first step, etc. Make the patient aware of the date - numbers and names of days and months are often lost - it helps them in their awareness and time frames. It's also helpful when they're discouraged: "Look two weeks ago you couldn't even do _________. Now you're an expert."
When something big happens (first step, first glimmer of movement, ANY recognizable accomplishment), have a party! Have balloons and approved "party food and drink" on hand for such an occasion. Impatience is a BIG part of stroke so it's important to not have to wait for a celebration. Just show the patient how very proud you are of them right then and there, and don't forget to write it down on the calendar, surrounded by stars! Take pictures or videos - because it is nearly guaranteed that the patient will be unlikely to see their own progress. They just remember how they were before the stroke, and is constantly aware that they're not that way any more.
Try hard to keep the strokee aware of their presence in the real world. Watch the news and discuss it, if language isn't a barrier. Watch comedies. Listen to radio, listen to music. Talk about what you are seeing, doing, hearing. Talk about family and friends, about all things you would normally have talked to them about in the same voice you used to use. Yes, they have suffered a stroke, but they need to know that the outside world is still there and waiting for their return.
Just as you did during acute care hospitalization, decorate the patient's room. Put up pictures of friends and family. This helps the strokee remember who they are and gives the staff another dimension of the fallen soul lying there: this was an active person with a family, loved ones. Looking through photos with the patient is mentally stimulating, but go easy. The brain at this stage needs to heal, it can quickly overload and result in exhaustion. Ask if there is anything from home they'd like in the room, any magazine from the newsstand, if they are able to read.
If possible, take the patient for walks/rides throughout the facility. Explore every nook and cranny, inside and out. Take advantage of outings they may have - make sure your patient gets signed up, even if you have to sign on too as a chaperone for the group. Try to get the strokee out of their room as much as possible. The room is for sleeping and resting, not a place to hide or escape from the world. As soon as it is allowed, take the patient out on a pass away from the facility. This may require some testing by the staff to be sure that you can transfer the patient and attend to whatever needs may arise. Go get a noninstitutional type meal! (A greasy hamburger with French fries and a malt will cure a lot of what ails you, and contrary to medical opinion, it will not cause instant death.) Just be careful not to overload the senses. After being in a controlled environment, Saturday afternoon at a mall at Christmastime probably isn't a good idea.
Your idea, and the insurance company's idea, of when the time is right for Home Sweet Home are not likely to coincide. Twenty years ago, a patient might have convalesced in a rehab facility many months until they could go home and live independently. But no more. Some inpatient rehab stays are as short as a few weeks. The main criterion for leaving the rehab facility may be as basic as being able to transfer to and from a wheelchair with assistance. It may also be that the patient is not recovering sufficiently (in the "Great Eyes" of the insurance case worker) to continue to benefit from a continual program of inpatient rehab.
So, no matter how you cut it, the burden is placed squarely on your shoulders as the caregiver. (And, this is the instant when you will begin to treasure that time when your loved one was out of medical danger, but temporarily under care and feeding of someone else.)
You'll generally face one of two scenarios at this point. Sadly, neither heralds the end of this long road. The most positive one: the patient has recovered enough to go home (often with lots of daily assistance), and can continue with outpatient therapy, sometimes at the same inpatient facility. In the second scenario: recovery has been limited, and the patient pretty much requires full-time care. Typically, therapy is no longer covered by insurance, and it becomes a decision whether the patient can be cared for at home or requires continued stay in a nursing facility.
In the next chapters, we hope to provide you with advice that will help you and your loved one go on, despite lives (yours and the strokee's) that are probably forever changed.
Please note: All the contents of this document are ©Joyce Dreslin, the author of this book, and are based on the freely shared experiences of caregivers to stroke survivors. Stroke Awareness for Everyone, Inc., (SAFE, Inc.), www.strokesafe.org/, has been granted permission by Joyce Dreslin to distribute this book through the Internet and to individuals upon request. Permission to copy and further distribute this book is granted subject to the following conditions: (1) no charge is made to the recipients; (2) this paragraph is included in its entirety; and (3) for distribution in excess of 20 copies the permission of the copyright holder is sought and obtained. For any questions about this book, its distribution or its copyright, please contact: Caregivers_Handbook@strokesafe.org by e-mail.