As part of your dutiful goodness, you may have promised yourself or your loved one that you would never consider a nursing home. Sometime in a pre-stroke conversation, you or your loved one may have even said, "I'd rather be dead than in a nursing home." If so, this difficult decision may become the most difficult one you will ever have to make, because there may come a time when a nursing or assisted living facility just has to be considered.
Unfortunately, there are no definitive rules as to when that time will arrive. It's not like you can say when this, this, and this occurs, it's time. Like all strokes, all caregivers are different. We come in various sizes and strengths - physically, mentally, emotionally. A stroke situation that one caregiver can handle without missing a beat might be too much for another caregiver who could be juggling a variety of other family, work or other personal stress factors. It comes down to knowing your limitations and then how far you can push yourself beyond that point. After all, back in an idyllic world before stroke, one might have felt that just dealing with anything to do with stroke was beyond our limitations. And then we found out just how tough we were - or weren't.
If pressed to provide a general rule, the classic textbook response is probably: consider institutional care when the patient requires too much skilled care to live on his own and is too needy (emotionally or physically) to live with family. A sub clause under that rule might be that the needs of the patient should not jeopardize the health and well-being of the caregiver and/or the caregiver's family. Special and unusual circumstances will be touched on later in this chapter.
As you enter into this decision, feelings of doubt, personal guilt or failure are very normal. We'd all like to be Super Caregiver and have limitless reserves. These feelings may also be intensified by the patient's fears of being in such a facility. While it is very difficult to move past these emotions, obsessing on them will ultimately stand in the way of you making the best decisions, with the clearest head, in reaching a balance of cost and good care. Hopefully, the information you read here will give you a sense of some control and direction - and also confidence that this is sometimes the best decision to make for everyone involved.
Temporary - the easier decision
When a stroke survivor is ready to leave resident rehab (as determined by the doctor or the insurance company), a skilled nursing facility - what most people think of as a "nursing home" - may be suggested as an alternative to going "home." The suggestion may have all to do with insurance coverage and nothing to do with the abilities or desires of the family. It may also be that the patient's progress, or lack thereof, would be better suited to the care that can be provided by such a facility. It may mean that the patient needs more medical recovery before he or she is able to better respond to or participate in rehabilitation therapy. There is hope and indication that more improvement will take place, and placement in a nursing facility is a temporary measure.
As with most decisions involving temporary situations, this isn't that difficult a choice to make. You've gone through this decision-making process dozens of times in your life - "I can live any place for X amount of time," "I can make it through this root canal because in X time it will be over." Because X has a finite value, there's an end more or less in sight. It's do-able! Choosing the facility (coming up shortly) isn't easy, but the decision to do so isn't that bad. It may a decision you'll have to live with for only a short period of time.
Permanent Placement - hard-core decisions
When the patient has more medical needs than it is possible for the caregiver to provide, long-term institutional care must be considered. A facility that provides nursing care 24 hours a day, with a medical doctor on call, may be the safest place for someone who needs continuous medical care and assistance with the most basic activities of daily life.
Making this decision against the wishes of the patient who is able to verbalize his objection and against your own previous convictions and promises to yourself is, in a word, tough. If you haven't heard a nursing home horror story, you've been living without any social contacts and probably on some other planet for the past twenty years. As medical science finds ways to prolong life, but not necessarily the quality of that life, a recent statistic stated that a stay in a nursing home will be in the future of 45% of all of us. Ah, and you may have heard the even grimmer news that most people don't live very long once in such a facility - one to three years, maximum. However, to give more comforting perspective to these statistics, it's important to keep in mind that most individuals who go to nursing homes are already quite elderly and/or terminally ill before this decision is made. Unless your loved one has other threatening illnesses, they may be living in a nursing facility for some time - making your search process even more critical, especially in terms of the patient's long-term safety and comfort.
A stroke survivor who still needs assistance, but who does not have family available or willing to help out, might be better suited to being in an Assisted Living Facility, also known as intermediate care facilities. These provide general custodial care and health monitoring, but generally do not have skilled nursing staff available.
Assisted Living Facilities typically are not covered by medical insurance, whereas, under some circumstances, skilled nursing facilities can be. But, if one is digging into the savings account (sans insurance) to pay for post-stroke care, an Assisted Living situation can be less expensive than a nursing home. But, as noted, the patient must be able to care for him- or herself with some degree of independence, and requirements for "how much" independence will vary from facility to facility.
Although a bit outside of the norm, Assisted Living can be an answer for survivors who may feel a need for separation from their family situation. This could be for a variety of reasons, including a sense of being a burden at home, or a personal need for less isolation and more personal freedom. While not completely able to live on their own, the patient has more independence in this type of facility, with some degree of care and health monitoring by those who are not so close to the situation as to be smothering. While family knows who and what the patient was before the stroke, and may be constantly striving to regain that status, an independent caregiver can more readily see that even in a diminished state, the patient is able to do much more on his or her own. Eventually considerably more independence may emerge.
The first thing you must do is to resign yourself to work on the premise that the perfect nursing home does not exist. Having that thought clear and foremost in your brain as you start out on this impossible mission will make your job much easier. The next thing you have to deal with is that to make the best possible decision for patient and family, you should devote a considerable amount of time to research. You're not going to find every feature you would like in one facility, so you will have to prioritize and assign weights to the features you'd prefer. Separate your list into Musts, Would be Nice, Can Live Without, Not at all Necessary. And as the patient's condition changes, for the better or for worse, your priorities may change, and these features may jump to other columns. Reevaluation from time to time should be made to determine if what was a Must is now a Can Live Without.
Just as we discussed in Chapter Two, Choosing a Rehab Facility, one of the highest priority considerations is that a facility must need the medical and safety needs of the patient. If we're following The Rule put forth above for considering a nursing home - when the patient is too sick to live on his own and too needy for someone to assume his care - medical needs have to be up there at the top of any list. An on-site hairdresser, barber and nail salon might be a plus, but it can't be even put on the same page as doctors and nurses when making your lists. Important medical issues could include the following:
Having devised your Wish Lists, the second order of priority should be to visit the available facilities. Someone must make in-person inspections. If the decision-maker cannot possibly do this, this very important task must be assigned to some trusted advisor. This is too big a deal to rely on reports, virtual tours, brochures, or even too much on recommendations from others. You've got to be able to check out things like the smells in the halls and the general appearance of the patients. Are they smiling? The smile quotient is a good one to include in your decision-making criteria.
During the selection process for a Rehabilitation Facility, we suggested that location was not as important as excellence in medical care and technological advances. When it comes to nursing homes, however, being close to family and friends - a visitation network - is one very important thing to take into consideration. It would be better for the patient to be in a lesser facility that is near friends and family than to be in a first-class facility so geographically remote that no one comes to visit. And while we're discussing visiting, some issues that might go on your lists are:
This is one time-consuming process. Just as Christmas shopping for a blue oxford cloth shirt of a particular brand with button-downed collar of 100% cotton in size 16 with 35-inch sleeves for under X amount of dollars is more difficult than looking for a dress shirt of any kind, any color, at any price. And you know what happens when you're in a time crunch on December 24 - you spend too much for not exactly what you wanted, and the recipient gets stuck unhappily with burnt orange with too short sleeves. Choosing nursing homes obviously comes with far greater stakes (and more anxiety) than fighting post-holiday crowds at the department store return desk, so start your shopping early - just as soon as it becomes evident that you might be needing a skilled nursing facility. If the patient is going from a hospital to this facility, chances are insurance isn't going to permit an extended check-out time while you search for the perfect bed. Get moving!
Upon visitation of facilities, meet with the home's administrator and/or admissions director and bring a notebook with you with all your lists and research. (Besides being a good idea for your own organization, this will send a strong signal to prospective facilities that you mean business, and that you expect professionalism in return.)
Your homework should have included going to the website http://www.medicare.gov to get comparisons of nursing homes in your area. Under "Nursing Home Compare," you can obtain all the general information as well as a list of any citations against them. Print out the pertinent information and serve notice to the facility's administrator that you are an informed shopper. Another website - http://www.eldercare.gov - will lead you to additional local resources for information about nursing facilities in your area.
Ask to see each facility's "Survey or Review Book" that must be visible and available to everyone. This will tell you what they have done to correct any citations. Ask for copies of their latest inspection reports. Maybe even be brave and ask if they have ever been sued!
From your initial visit, you should get a feel for the home's philosophy. Do they promote independence and encourage individuality? Is there a written statement of patients' rights and is it displayed where it can be seen? Are the residents and families encouraged to participate regularly in planning conferences and care? Is there a resident council where residents can voice concerns? Who receives and is responsible for resolving complaints? Is there an activities director? What is the policy on advanced directives?
Your power of observation should be fine-tuned to pick up on two of the most important criteria in selecting a facility: (1) cleanliness and safety and (2) the other residents. To meet licensing and accreditation demands, the facility should have wheelchair ramps, solidly-built handrails on both sides of the hallways, grab bars and easily-reached emergency alert alarms in toilet and bathing facilities and other safety features. Check to be sure the exit doors are clearly marked but secure enough so that residents don't leave when they're not supposed to. Your nose and eyes should determine the cleanliness. Check out windows and floors. Are halls free of clutter and every room is well lighted? Ask for a tour of the home, including the kitchen and laundry rooms. As for the residents, check out that smile quotient.
If possible, talk to them, but more importantly (and probably more reliably) talk to their visitors. Family members and caregivers will have the real scoop. Are they speaking freely or seem to be guarded in their responses? Are the residents dressed and groomed? Are they encouraged to move around or are they restrained in chairs? If the weather is nice, are they outside? Do the patients' rooms feel "homey" - are they allowed to have personal effects (pictures, small pieces of furniture, books) that will allow them to feel comfortable? Are there a variety of recreational, cultural and intellectual activities available for patients?
One important thing to note is the average age of the residents and how it compares to your patient and also why they're there. Putting a 50-year-old stroke victim in a home where most of the residents are 80-year-old Alzheimer's patients will not be a good match. Ask about other stroke patients and any special considerations made for them.
Especially if you are very limited in budget, try to see beyond choosing a home based on "new" versus "old." Some smaller, older nursing facilities may have excellent local reputations and be run with great pride and care, whereas a new facility may be run by a large corporation that cares only about its profit margin, cutting corners everywhere they can. "Old" does not necessarily equate to "dirty" or "incompetent." In choosing a hospital, a state-of-the-art modern facility is an important consideration when you are going to have a heart bypass. A long-term nursing facility, however, should be viewed for its qualities as a safe and humane home-away-from-home, with very different criteria at work.
You may find the cleanest, safest nursing home in the world, but if the staff is impersonal, is not well trained, or there is too little of them, that is the worst stink of all. Your nose won't pick up on it, but your heart should. How they answer your questions will be your first clue. Are they open, friendly, happy to converse, or do they act like it's a chore and/or become evasive? By all means ask about the staff/patient ratio, the employee turnover rate and the average time employed by the facility. Ask if staff often has to work overtime to maintain minimum staffing levels, and beware of facilities that practices "forced" overtime. All facilities seem to be understaffed or minimally staffed, but a severely overworked nurse is not what you want watching over your loved one. Watch staff in action as they interact with residents. Are call bells answered promptly? Are residents treated with dignity? Is privacy respected? Big focus point: Check out how the patients with no family members present are treated.
Eventually, food will likely become a major factor for the stroke patient - especially for long-term care. Even if the patient is getting nutrition through a tube when they arrive, this could easily change. Be sure and stick around for a meal service and ask if there's a dietician, can special diets be requested, is help in eating available for those who need it, and can family members join residents for meals. Do patients go to a dining room or are they fed in their rooms and are there options? Chances are the food won't be four-star gourmet, but is it healthy and what you would consider edible? If you have the time, ask to sample a lunch in the patient dining room - or (if the facility won't serve you lunch) perhaps just have a cup of coffee in the dining area during mealtime. This is a perfect time to chat casually with patients and also observe how they are attended to during mealtime.
Though we haven't mentioned price, we presume that you have been shopping within your and/or your insurance provider's budget. Make sure you know all costs up front, including what costs must be paid out of pocket, like laundry, medications, special equipment. If you working under Medicaid or Medicare parameters, you may come up with a more limiting set of options. A bed might not be available where you decide you want your loved one to go. Put your name on all desirable waiting lists - you never know what will come up and when.
Important note: if you're in a time crunch and have to make a decision in a hurry, it is probably a good idea to not sign any contracts for longer than month-to-month or even day-to-day. Sometimes you just don't know how things will turn out for your patient in what seemingly was a great facility until they've experienced it. And if you want out, you'll want out as easily and quickly as possible. Also, be extremely wary of something called "life care" contracts. These often involve paying large, non-refundable fees, and even sometimes transferring assets to the nursing home, in exchange for its promise to care for the resident for life. If a facility goes out of business, such a contract is worthless, and this is a big risk to take.
Before you sign any contracts, and if you are dealing with Medicaid, Medicare or insurance coverage of any kind, make sure that you have all approvals from the insurance company in writing. Be sure that the approvals match the specific care level at the facility you are considering. "Misunderstandings" of coverage can cost some pretty big bucks, when it comes to nursing homes. Don't leave yourself vulnerable.
In fact, have absolutely everything in writing. Every question, every comment, every complaint needs to be sent to the administrator with copies to every pertinent staff member. Keep copies of everything. Serve notice (in writing) as to who is to be contacted for which part of the patient's care. Ask to be notified when any medications are changed, added or discontinued, when any incidents occur, when doctors see the patient and to receive copies of their reports when they do.
Get to know the staff personally - as many of them as possible, especially the nurses and the aides. Do not respect visiting hours. Show up at odd hours so that the staff doesn't know exactly when you'll appear. Carry a clipboard or your big notebook and keep notes while keeping staff on their toes wondering what's going into the notebook. Remember from your home tour where the offices are and how you can find the head honcho when needed.
Get to know other patients' family members and agree as a group to watch out for others and communicate anything you feel is not right.
Find out the contact information for the Patient Ombudsman for your region. That is a position required by the government under the Disabilities Act. Every state must have them, and they can be very helpful to you in finding and ensuring care.
Look in your phone book or on the internet for any sort of Brain Injury Services or agencies or organizations with similar names. Contact your local Council on Aging. Look for any Department of Rehabilitative Services. All this research takes time but you may be rewarded with some delicious fruits for your labor.
It is a very difficult decision to turn the care of someone you love over to someone you don't know, and it may take a long time to adjust to the decision you've had to make. The patient may adjust lots faster than his or her caregiver. It may be all a matter of attitude and acceptance. The perfect situation doesn't exist, but the world of stroke is in itself a whole lot less than perfect. It just isn't a perfect world we live in.
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.