Remember our mantra of the early chapters: No two strokes are alike? That meant that we couldn't put a pattern down and trace exact methods guaranteed to work towards recovery or figure out just when everything was going to occur. We used terms like "expected to," "probably," "may," and "in all likelihood." But when it comes to leaving rehab or hospital care and coming home, the following statement has no such flexibility. We even use the forbidden term "never." You can bet the farm on this one: Life after stroke will never be the same as life before. It's guaranteed.
It doesn't matter if the patient is returning to the same home they lived in before and in the same relationship (spouse, parent, etc.). This family member will not have the same role in the home as before. The statement also holds if the patient is moving into a new location and situation thanks to the generosity of a caregiver (son or daughter taking in a previously independent parent, for example). In some instances, those who were cared for will now become caregivers. Family breadwinners who used to call the shots lose all control. The family rock might now be just a mere pebble. What seems to be the same old body may now contain a totally different person or you may have the same person in a different body. It may take time to figure out just what you've got because the survivor may be unable to communicate that he's still in there. How frustrating is that? Mucho - for everyone concerned.
It also doesn't matter how much recovery has or hasn't taken place or how much recovery can be expected to take place through therapy or with time. At this time, however, we can repeat it with absolute and irrevocable certainty. Even if the patient has a seemingly full recovery, life will not be the same after the stroke as before. (Note: the term "full recovery" is qualified because those of us who have experienced stroke agree that there is seldom truly full recovery from stroke. Recovery is a lifetime endeavor. Improvement can and often does continue in many survivors - the recovery landscape is ever in flux.)
Just because a stroke survivor is no longer hospitalized doesn't mean they're well or as well as they often think they are. As we said at the conclusion of the last chapter, chances are an insurance company, not a doctor or a family member, has made the decision to send the patient home. This decision is often based on criteria from insurance company statistics and seldom on evaluation of individual cases.
A good rehab facility will have someone on staff whose job it is to make sure the environment the patient is being discharged into is physically able to handle the patient's needs. This should involve a home visit or an extensive questionnaire. How many steps must be negotiated? What is the proximity of bed to bathroom? In a multi-story home, can the bedroom be set up on the ground floor? What sort of adaptive equipment will be necessary to insure safe bathing and use of toilet facilities? A trial run of one night at home before permanent discharge might quickly bring potential problem areas to the forefront. Rearrangement of furniture, installation of ramps, etc. could then be made before they come home for good. And while you're at it, make sure the "experts" haven't missed anything, because you know your home and your loved one the best.
Obviously a person with physical limitations will require more attention than before. That's common sense and preparation can be anticipated. One is never quite sure how permanent the disabilities are or what can be improved through therapy, so naturally the first focus is usually on the physical effects of the stroke. However, when a patient has cognitive limitations and emotional issues, caregiving becomes much more challenging - such issues are much more "invisible" and difficult to address than are absolute physical limitations. Dealing with such things as depression, emotional lability (bouts of crying or laughing, often at inappropriate times), impulsiveness and change of personality may require professional help. Nothing in your previous life can prepare you for this, so your training is going to be of the on-the-job sort. Eventually you'll learn to hit those unexpected curve balls because you've been thrown so many and have been knocked down by a few.
Caregivers have limitations too. If you have been overseeing hospital care and handling day-to-day decisions, be aware that you're in a weakened state. You have been clobbered by shock, wrung out by life threatening situations, and operating on pure adrenaline without regard to eating properly, getting enough sleep and exercise. You've walked arm-in-arm with Stress each day, and you've survived, so you think you and Stress have come to terms with one another. Well, hello! It's time to meet a new and different form of that destructive character named Stress. This one may not hit you in the head to knock you over. It's more like nibbling away at your feet, bit by bit, until you collapse. While it's happening, you may not recognize that your entire physical, mental and emotional well-being is being eroded. It's important to constantly work at replenishing these resources and to realize that they will not necessarily all come back at the same time or with the same amount of recovery:
Physical -
Re-establish regular eating habits, get back on good, healthy foods, including real fruits and vegetables, drink plenty of water and leave those fast food "fixes" and vending machine snacks behind. You'll be spending more time at home now, so try your best to kick the convenience food habit you've no doubt had to take up just to survive hours and days at the hospital. Plus, if your loved one is eating normal food, you'll be providing a better diet for them as well!
Relax your standards. Rest is more important than dusting, exercise should take precedent over vacuuming, which is not classified as a good exercise. You'll have many new responsibilities taking up your time - so learn quickly to forgive yourself, and not be embarrassed over, a few dust bunnies under the bed ...or even in more obvious places.
Mental -
Try the power of positive thinking and make the running commentary in your head a positive string of thoughts. It could be within your ability to make your life better or to make yourself miserable. Try not to get uptight about the "what ifs" and "if onlys." Get help if you can't do it alone! Join a support group and/or enlist the help of a trusted friend or professional counselor. Also, many caregivers (under a doctor's supervision of course) are better able to cope with the help of antidepressants or anti-anxiety medications. You should not feel shy or embarrassed to seek help and support in any form. It is likely to save your sanity.
Spiritual -
Caregivers and their stroke survivors may have some unresolved issues with God as a result of all they have been through. It's important to get spiritual guidance to get you through these issues.
Upon discharge there may be all kinds of recommendations given to you by the hospital on how to set up your home to be strokee-friendly. The bathroom is of paramount importance because of the small space in which to maneuver surrounded by lots of hard surfaces. It's the scene of an accident waiting to happen.
One suggestion will probably be to install grab bars to make toileting and showering easier and safer. That will take a little doing, to find the bars (Home Depot, e.g.) and then find someone to install them (attaching them to tile isn't an any-fool-can-do-it kind of chore). So, you might think that since this need is only temporary - soon the patient will be strong enough, mobile enough, have good enough balance so they won't need them - that this might be something you can work around and instead, you'll just be there to help each time instead. Bad idea! Better idea: assume every need is a forever one and make every effort to set up the best possible equipment to facilitate those needs. You'll probably have to be there to help anyway, but you need all the help you can get too. It's better to have equipment you're not using after a few months than to go those months without. Proper tools make unpleasant jobs easier. Have you ever had to vacuum with a $29 cleaner? If you can afford the Cadillac line of equipment, don't go for Volkswagen. Think of this journey as a long cross-country one with the Rocky Mountains to climb over and the Mojave Desert to cross over - the ride may be smoother if the vehicle is of good quality.
Other bathroom needs: shower chair or bath bench, hand-held shower spray, raised toilet seat extension, non-slip bath mat, long handled body washers, portable bidet, one-handed toothpaste dispenser, scrub brush to attach to sink for one-handed hand washing. (http://www.sammonspreston.com/ or 1-800-323-5547)
Hospitals have a way of sending you off into the real world armed only with a sheaf of papers, thinking that life is something you can handle with a 50-page manual. If you do everything as they say, life will be good. Take medication at 8, do exercises at 8:15, get dressed at 9 - this manual, however, is giving you permission to deviate from the prescribed program. The patient won't die if you need to modify the program they've set up for you. What works for you is going to work. It's OK, say, to help those with only the use of one hand to put on socks if that means you're going to free up a half hour for more enjoyable activities. It's also OK to take as long as is necessary so that they learn the skill of sock donning. No one else's rules have to be YOUR rules.
Having said that, you can make your rules, caution must be issued that it's important to set up some sort of a routine. You've got to organize and prioritize because you'll have more to do than you have time in which to do it, and before you know it, you'll be overwhelmed. Those who were highly structured before stroke may have difficulty easing into a more go-with-the-flow lifestyle, while those who had no organization in their life will have another sort of difficulty. Finding the right formula is going to take time.
The patient may come home from the hospital with a new set of habits. It's really hard to unlearn what has become a habit. One who has never eaten a breakfast before in their life will be awaiting the morning meal upon a tray. Addiction may be a problem - can't live without the constant presence of a TV, for instance. 8 p.m. may trigger a desire for a bowl of ice cream. Medications are something delivered at the appointed hour with a glass of ice water and for which the patient has had to take no responsibility. Assess the situations and habits and decide early on which ones have to go and which are worthy of keeping. Ring Bell, Get Service might be one of those at the top of the "gotta go" list. Gradually begin to reinstate responsibility back into the patient's life, but be sure they are cognitively and physically able to handle it.
No one knows what the future will hold. Caregivers need to realize early on that if they're waiting for their stroke survivor to "get well," they may be waiting until the 12th of Never. Stroke is not an illness or disease where you can take some pills, do some exercises and in X number of weeks, the patient will be fine. Always look for progress even if it is in minute ways. Recovery should not be measured in terms of regaining what one had before the stroke, but the progress one attains and the adjustments one makes in being able to make do with what one has left. If you are realistic (not necessarily negative), you may be pleasantly surprised instead of profoundly disappointed. Unfortunately, the patient also has to "buy into" the recovery process. No caregiver can do that for them. A good therapist might be able to convince the stroke survivor what has to be done for optimum results. However, if the survivor isn't willing or because the stroke has damaged that part of the brain which gives them the ability to perceive and understand that it's all worth trying, the challenges will be greater and the results will be lesser.
"Sometimes it is the artist's task to find out how much music you can still make with what you have left." Violinist Itzhak Perlman upon finishing a concert after breaking a string.
The toughest job of your life. Don't say no one ever warned you. We just did.
That you'll be scared to death. Strokees have been known to sleep an inordinate amount, sometimes doing so in the middle of a conversation, and they can make the strangest sounds while they're sleeping, holding their breath, snorting, wheezing while various limbs sometimes convulse. Since you probably haven't been exposed to this aspect of stroke while they were hospitalized, it can be pretty frightening to the new caregiver. Add this to fears of falling and failing - that you'll fall down on the job and the one you're caring for will literally fall - and the fear that you'll never ever have a life again, and you can work yourself into a pretty good-sized frazzle. Chances are you've already been told that once a person has one stroke, the odds increase that there'll be another, so finally getting your patient home can be one worry after another.
The possibility of seizures. This seems to rank consistently amongst the top ten of things nobody tells caregivers. Every caregiver's worst fear is the possibility of another stroke until a seizure takes place, because a convulsive seizure can look a whole lot scarier than what happened when the stroke occurred. Because a stroke survivor has suffered a brain injury, there is always the possibility that a seizure may follow - sometimes months or years after the stroke. Sometimes it's an isolated incident or the beginning of a series of incidents. Medication is available to prevent seizures, but since there are multiple side effects associated with this class of drugs, finding the best one for your strokee may be a trial and error process. While being aware that seizures may happen is not a comforting thought, should one occur, you're ahead of the game to be able to recognize it as a seizure and not death knocking on your door. Also, as scary as seizures seem to be, most seizures don't result in permanent damage, in the same way that strokes do - and, in fact, only a small percentage of stroke survivors have seizures at all. You just never know who's going to fall into that small percent, so it's something you want to know about in advance. Don't hesitate to have a frank discussion with the strokee's doctor - ask how to recognize a seizure and exactly what to do. In the long run, it will give you peace-of-mind.
Incontinence. Such a messy subject, and another topic for the everyone-is-different heading. It seems that nearly every caregiver is going to experience this problem to some degree. We touched on it in an earlier chapter as the possibility occurred that it could be a communication problem: the patient can't get the idea across that they have to go to the bathroom. Stroke survivors can also experience a lack of muscle control so while they know they have to go, and they can communicate that thought, they just can't hold it until they can get to the proper facilities. Sometimes the problem is temporary, often the patient can be retrained in toiletry skills, but in some cases, adult diapers are going to be forever a clothing accessory. (Order by the case from: Allegro Medical Supply at http://www.allegromedical.com/ or 800-861-3211.)
Accidents (urinary and bowel) have a way of happening even to those most seemingly in control. When the mind gets diverted, when amongst crowds or in situations where the patient becomes nervous or uneasy, you never know when the floodgates are going to open. It helps to check out the location & handicapped-accessibility of bathroom facilities whenever in a new environment. One caregiver learned this lesson well when she found her husband improvising by urinating into the potted plants at the mall. Be prepared and bring extra clothing on outings. If necessary, revert to diapers for safety when heading out into the real world. In many ways, it's like preschool all over again! But there are also prescription drugs that can be given to help forewarn and control, and if all else fails, here's a recipe for getting IT (and we mean the dreaded "#2") out of your carpets:
First, clean up as much of "it" as you are able, with paper towels or other disposable helpers. Fill the glass container with the very, very hot water, add the Tide and vinegar, and shake vigorously. Generously apply to the stained area on the carpet with a sponge or rag, so that the area is wet and saturated with the mixture. Fold the towels and lay them flat over the area, at least six layers thick. Find some incredibly heavy object with a flat bottom - a five gallon water bottle works well, or piles of very heavy books. Put the object(s) on top of the towels. Let sit overnight. The stain magically soaks up into the towels. Depending on the depth of the stain, it can take more than one application ...but it really works pretty well!!!
Stroke effects may last forever, but therapy generally won't. It's another Caregiver Law of Certainty that eventually you'll butt heads with your insurance provider. They seem to have these little timetables (that they don't share) about how much therapy is enough. Just when you think you're seeing improvement, those improvements are deemed not "significant functional improvement," and you're outta there. It's supposed to be related to whether progress is still being made, but in reality, it's probably calculated in months or days according to some law of averages (that they also don't share). Somehow, somewhere they found two stroke survivors who were similar and set rules accordingly - or so it seems. You can appeal these limits based on continual improvements or possible risks to patient safety. If, in a doctor's opinion, the patient is close to being able to do "X" (walk, talk, etc.) often the insurance company will extend therapy beyond their preconceived limits.
Also the doctor can reorder therapy at a later time if abilities that were regained are lost again or if suddenly there's a marked improvement. These things happen. For a long time everything appears to be the same, and suddenly improvement can start up again at some totally random time. Changes, improvements and setbacks are going to be a routine part of life from now on. Be nice to the doctor, you need him in your corner. The fight with insurance providers is worthy of pay-per-view coverage, but unless you have the benefit of a support group or a supportive doctor, therapist, or human resources director to give you the war maneuvers, you'll be fighting the battle alone and in the dark.
The disappearance of friends and even family. This is one of the very hardest things to accept. Caregiving can become a very lonely endeavor. Because stroke recovery is such a long, slow process, it will quickly surpass the attention span of some of those you thought were near and dear to you. When stroke first happens, the outpouring of support can be heartwarming. But after awhile, the crisis stage is over, the victim is going to live, the gang moves on, and since you're not able to hang with them, they leave you behind even though you still need them. Often people are uncomfortable seeing and accepting the disabled person the strokee has become. Perhaps it serves as too visual a reminder of one's own vulnerability. There, but for the grace of God, go I. Others assume you must be far too busy to want company or social activities. The solution to this problem is to grieve a little for your losses, and then move on. Be proactive and reach out, and try very hard not to dwell on what are really the shortcomings of others who will never understand your new life. If those you reach out to shy away, look for new friends, new groups, new leisure activities within the realm of the disability. For each of us there's a need to have outside contact with people outside the world of stroke. Avoid isolation. There can be a life after stroke and it can be good - different, but good. Unfortunately it may not come knocking at your door. You've got to seek it out and create it for yourself, your loved one, and your sanity.
Depression - Patient's and Caregiver's. Depression often sets in when survivor and caregiver start to realize that disability is a reality. Don't fight it. A horrific thing has happened and torn your life apart. Don't pretend that it didn't. You have a right to be angry. It's common for spouses to feel first resentment towards their mates for having had a stroke and turned their life upside down and then guilt for those feelings. It's natural and normal for the patient to get angry at the caregiver and overly possessive of your time, energy and attention. You wouldn't be human if you weren't sad at this time.
Be honest with yourself and be honest with others. Pretending that everything is hunky dory and going swimmingly isn't going to cut it. It takes too much energy to put up a good front and it just makes the road back to good mental health that much longer. Crying will release many pent-up emotions, and even men shouldn't be afraid or embarrassed to indulge. You've got to experience all these emotions if you're going to move beyond them. And eventually you've got to allow yourself to be happy again. There can be laughter and smiles despite the situation you've been thrown into. But it may take professional help to accomplish this. Don't hesitate or be afraid to seek a qualified therapist or counselor. A good place to start is with your primary care doctor. If your insurance and finances will not allow for such counseling, seek out local or on-line support groups for caregivers. In fact, do that part anyway - even if you are able to participate in counseling. Misery does love company, in fact, and exchanging war stories with others can change your life - and others'.
Doctors, OTs and PTs who don't know it all. First they tell you all strokes are different and then they try to lump you all into the same category to predict what happens when. If you have more than one doctor, primary care and specialists, and an assortment of therapists working with the survivor, chances are the day will come when they'll contradict one another and dispense conflicting advice. It gets dangerous when they also dispense conflicting drugs. Make friends with your local pharmacist to stay on top of such errors - and even consider purchasing your own drug reference book. The Physician's Desk Reference is the most respected, but there are others that weigh and cost less, and don't hesitate to check things out each time a new drug is prescribed. You never know when your favorite pharmacist might be out on vacation.
Things will get better and easier. Even if the patient doesn't. Doing things for the first time is always the hardest, and the hardest task becomes routine with practice. You will survive! Try to look at the all the big tasks as composites of little sub-tasks. Pick the result you need and focus on each little sub-task that leads to that result. When you conquer the little tasks, they can be put together to accomplish the big one.
You're the most important in the world to the person you're caring for. If the foundation cracks, so goes the building. Take time to mend the little crumbles before they turn into major problems. Try to continue with your outside interests, do whatever it takes to buy a break now & then. It's not selfish to care for you. Caregiving requires inner strength, and no one can be strong all the time, especially if sleep-deprived, overworked, under-appreciated, frustrated & lonely.
You got this job as caregiver because you love the person who has been affected. This love will make you very observant, sensitive to the patient's wants & needs, and carry you through the darkest hours. Even though you didn't train for this job, you've been tested mightily and have obtained an encyclopedic knowledge, so you can become an outstanding caregiver. You can't go wrong if what you do is done with love for someone you love. Believe in yourself and know that it's within your power to do whatever needs to be done. We know you can. We've all done it.
"We are each of us angels with only one wing; and we can only fly by embracing one another." -Luciano de Crescenzo
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.