Multiple Sclerosis Plan Of Care

LOOKING AHEAD AND planning for the future can be an exciting and exhilarating experience. We anticipate and busily plan for graduations, weddings, new babies, new homes, or job promotions. Planning for happy events makes us feel good. On the other hand, looking to the future and anticipating the possibility of illness or disability, as well as the eventuality of old age, is more likely to be uncomfortable, stressful, and unsettling. Because of the discomfort involved, it is tempting to avoid this unpleasantness and stop what many would describe as pessimistic and morbid thinking.
 

Multiple Sclerosis Plan Of Care

If anticipating and planning for the unknowns and negative eventualities of life make people so uncomfortable, how do we motivate ourselves to turn our thoughts in this direction? How do we overcome our anxieties and turn the process into something that is reassuring and affirming? This is not an easy task for anyone, but once the planning process is underway, it can bring a sense of mastery and control to one's future, and a confidence in one's ability to meet whatever turns and detours lie ahead. 

Fortunately, we live in a time when planning for the future and anticipating the support one might need to remain active and independent are receiving increasing public attention. With modern medicine and the technological advances of recent years, life expectancy in our society is the highest that it has ever been.
 
Where previously families tended to provide the safety net of care for their members, today's fragmented and mobile population means that many families are not available to assume this role. In addition, many households depend on the employment of all adult family members in order to meet expenses, a reality that certainly impacts the availability of family support. When you add to this scenario the rising cost of purchasing assistance and services, it is understandable why our society is beginning to give increasing attention to long-term care insurance, financial planning, elder law specialization, and various other strategies to anticipate and address future care needs.
 
This blog is designed to help you think comfortably and constructively about the long-term care needs that a person with MS might encounter. Could there be a time when you or a family member with MS might need help with personal care such as dressing, bathing, transferring, or toileting? What about meal preparation, grocery shopping, laundry, housekeeping, or money management? Although it is advisable for everyone - with or without MS - to anticipate a future decline in health and avoid crises through careful life planning, living with a chronic, variable, and unpredictable disease such as MS makes this endeavor even more critical. 

In addition, once a diagnosis of MS has been established, options such as the purchase of disability insurance and/or long-term care insurance may no longer be available. Alternative creative and thoughtful strategies will need to be explored.
 

Although finding such alternatives may seem a daunting task, it is seldom the development of the plan that is the most challenging aspect of this process. What can be even more difficult is addressing the anxiety and fear that can come with that planning, and moving from seeing such planning as "giving in" to the disease, to seeing the planning process as the vehicle by which choices will be assured and quality of life maintained. To find out more, you can check out Multiple Sclerosis Plan Of Care.

MS Caregiver Burnout

Managing decision-maklng and emotional support needs 

THE EFFORTS OF well-partners to meet the decision-making and emotional support needs of their partners, as well as their own reactions to caregiving, require as much creativity and energy as hands-on care. The greatest source of that energy is a satisfying marital relationship. Well-partners who are in satisfying marriages experience less emotional distress, regardless of the kinds of help they are required to provide. It follows from this that some of the best caregiving medicine is to keep or make the marriage healthy.

MS Caregiver Burnout

Most marriages have a trouble spot or two that seem manageable until the additional challenge of MS enters the picture. In order for a couple to get along, it is essential to keep those trouble spots from becoming open wounds. This is best done by acknowledging the difficulties and devising solutions. Some couples choose to handle these issues on their own, whereas others opt to work with a marriage counselor or attend a couples' support group, such as those offered by many National MS Society chapters or comprehensive care clinics.
 
Couples living with severely disabling MS sustain many significant losses during their lives. These may include having to give up activities they enjoy doing together, changing career goals, being unable to provide for their children as they had planned, or having difficulty planning for retirement. Couples who are successful at managing these losses and remaining committed to one another seem to do so by recognizing the need to be in charge of MS, rather than the other way around, and by seeking help and tapping available resources along the way. In order to turn losses into challenging opportunities, couples need to give their marriage and family first priority, and they must be willing to work MS into the rest of their lives.

Having a plan for the future can be an important part of this process. Many couples begin to live one day at a time, in part to avoid the frightening realities that the future may hold. Having a plan can help put worries to rest and prepare people to be more in control, no matter what the future brings. Occasionally, the physical and cognitive problems of MS can be so advanced that the well-partner must take over all decision making for the MS-partner. Such severe disability can be very distressing for the well-partner who is grieving the loss of his or her formerly equal partner. 

This situation can be somewhat easier to manage if the couple has been able to talk and plan together weal in advance. An open discussion of this kind enables the well-partner to understand the wishes of the MS-partner and take them into account in treatment and long-term care decisions (e.g., nursing home placement or life-sustaining treatments).

WELL-PARTNERS WHO ARE caregivers for loved ones with disabling MS have many responsibilities. Among the most critic are keeping themselves and their relationship healthy. This involves attending to their personal health and emotional needs; working with their partners to manage problems in the relationship; recognizing that everyone has a limit to what he or she can be and knowing what their own limits are. Well-partners need friends, hobbies, and other social and emotional outlets, and need to recognize that asking for help is a sign of honesty strength. It may also mean making sure that they have their own MS-free zone in the home - a place where they can feel "off duty," if only for short periods of time. Taking these steps will help partners maintain their care partnership - in the true sense of the word - and ensure the well-being of their partners and themselves. Taking charge in this way can help put MS in its place and keep family life as the central focus. To find out more, you can check out MS Caregiver Burnout.

Multiple Sclerosis Caregiver Burden

Relieving the Pressures Of Caregiving
 
EARLIER WE DESCRIBED caregiving as falling into three general kinds of help (instrumental or hands-on, decision making, and emotional support) and suggested that thinking about care in this way could be useful for finding solutions to difficulties. The initial step in creating a solution is to understand the problem and break it down into manageable parts. Then, even if the whole problem cannot be completely resolved, at least some parts can be more comfortably managed. As described, hands-on or instrumental help tends to cause physical strain on the caregiver, whereas the necessary decision making and emotional support tend to be more emotionally stressful. 
 

Multiple Sclerosis Caregiver Burden

Managing instrumental care 

A FIRST STEP in figuring out ways to reduce the physical strain of hands-on care is to find out if there is a healthier or easier way to do the job. With a doctor's prescription, most insurance companies will pay for an occupational or physical therapist to make a home visit. This specialist can advise on ways to manage transfers that will protect both the well-partner and the MS-partner; suggest equipment that will make the kitchen, bathroom, and bedroom safer and more accessible; and devise strategies for managing other logistical problems in the household. Couples should not hesitate to discuss home management difficulties with their physician. Symptoms that interfere with daily activities (e.g., spasticity and fatigue), can often be managed with medications or other treatment strategies.
 
For a variety of reasons, many couples are reluctant to ask family and friends for help. They often feel that help should be offered without their having to ask for it. Sometimes family and friends are interested and willing to help, but do not know how to do so. Or they may be concerned about making commitments that they cannot keep. Couples should take the initiative in asking for help. The worst they can get is a no.
 
The best strategy is usually to ask family and friends for help with those needs that come at predictable but infrequent times, such as a trip to the doctor or shopping. The request should be a specific one. "Would you be willing to stay with your sister one Saturday so I can run a bunch of errands" is not as likely to get the job done as "I have an appointment with the dentist in two weeks at 1:00, which should take about two hours, including travel time. Would you stay with your sister that day while I'm gone?" This kind of request gives the family member a specific event to help with, an idea of how long it will take, and time to make the necessary arrangements.

It is also possible to recruit people to help with routine but occasional activities that are social in nature as well as instrumental. This might involve asking a neighbor or church member to come in to wash and set the MS-partner's hair on a regular basis. Once family and friends become more comfortable spending time with the MS-partner, they tend to make themselves more available.

Transportation for the MS-partner is often a major worry. Many chapters of the National MS Society and other community agencies help people travel to and from medical appointments. Some community transit authorities have programs for their disabled customers. These options should be explored, perhaps by a family member who has mentioned, "if there is ever anything I can do ..."

The caregiving that is done daily at planned times can be difficult and demanding for well-partners. It is unlikely, however, that family and friends can routinely provide this kind of help because of their own schedules and commitments. Some couples find that it is worthwhile to hire help, either through an agency or privately. Most state departments of human services offer a Home and Community Waiver program that makes home health aides and other services available. 

Eligibility requirements and programs differ from state to state but should be investigated with a social worker, the National MS Society, or the county department of human services. Family members may differ in their feelings about having strangers in the home to provide personal care, but the fact remains that competent assistance is often available and having that assistance can help preserve the health and well-being of the partner caregiver and possibly the marital relationship.
 
In many respects, unpredictable daily needs are the most emotionally stressful for couples, and they tend to leave the well-partner feeling either trapped or constantly "on call," to help or get or find or do one thing or another. Since these unpredictable requests can result from emotional needs as well as physical limitations, the responses of the well-partner can become quite emotional as well. It is important for a couple to talk together about how they are each reacting to the other's needs and to discuss the best ways to manage those reactions. 

Providing the MS-partner with the security of a portable telephone or emergency alert service may ease the tension both partners feel when the well-partner is away from home. Day respite programs are offered by some MS comprehensive care centers and other community agencies.

Such programs can be a valuable alternative to staying home alone, especially for those who require frequent help and a structured environment. There is no single solution to matters of managing the "hands on" care needs. Developing a workable solution comes from working together to understand what needs to be done, being open-minded about the possibilities for getting the job done, and balancing each partner's needs. To find out more, you can check out Multiple Sclerosis Caregiver Burden.

How To Maintain Multiple Sclerosis Relationships

When Frustration Leads to Abuse
 
ALL OF THESE stresses and frustrations, whether they relate to life plans that have been thwarted, unwanted responsibility, or increasing dependency, often have no constructive outlet. It is not uncommon for emotionally harmful behaviors to develop between partners. Hurtful words are spoken during a difficult transfer into the car, shouting matches erupt when the well-partner is late arriving home, doors are slammed when there is a disagreement, or threats are made about putting a hospital bed in the family room, nursing home placement, or divorce. These angry encounters, probably never part of the relationship before MS, may become increasingly common.

How To Maintain Multiple Sclerosis Relationships

Couples who have never raised a hand toward one another in anger may occasionally become physically abusive. Such physically hurtful exchanges usually begin to occur in the context of giving or getting personal help. It can begin in small ways - the well-partner being rough when brushing the MS-partner's hair or giving a bath, or the MS-partner scratching the well-partner during a transfer. Once frustration and anger have reached this point, physical abuse by either partner may become more frequent.

There is usually a great deal of very honest guilt and shame after these events, with promises to partner and self that it will never occur again. Often, though, it does recur, perhaps worse than the time before. For that reason alone, no level of abusive behavior is acceptable. While the circumstances that create the frustrations leading to abuse are often unavoidable, the response of physical aggressiveness is not. That is why it is so important to be aware of the tensions as they mount and do something about them before more emotional or physical harm is done.
 
The majority of couples never experiences such levels of distress or become abusive. It is important to be aware, however, that mutual love, deep commitment, religious values, or financial resources do not necessarily protect partners from becoming hurtful to one another. Outbursts begin to occur when people ignore mounting frustration, fail to recognize that they cannot control themselves, and are unable to identify any options for themselves. The only acceptable position to take is that abusive behavior is never acceptable, and that creating solutions is possible if the couple is willing to admit their stress and seek help. The best way to avoid bringing abuse into the relationship is to prevent the painful emotions that lead to it.

How to Keep the Relationship Alive and Well 

Effective Communication
 
THERE ARE SOME general things that all couples who are dealing with advanced MS can do to keep the care partnership alive and well, and some very specific things. The most important skill for any couple is good communication. Being able to share feelings, opinions, and points of view, by taking the time to talk to and listen to one another, is essential to any successful partnership. Although couples who are not living with chronic illness often rely on communicating "on the run" while sharing a ride to work, gardening, or before they fall asleep, couples who live with MS find that they cannot count on such opportunities.
 
Because of time constraints, fatigue, or MS-related memory, attention, or concentration problems, MS couples may have to work harder than most couples to find the best routine for "staying connected," and making it a routine is very important.
 

Decisions that need to be made and disagreements that need to be resolved are best dealt with one at a time before they become problems. Couples who have trouble making time to talk together, or find that very intense feelings about several issues have gotten mixed together, should consider consulting a marriage counselor who is familiar with chronic disease. Such a therapist can help the couple work through existing problems and build skills for managing future concerns. This, in turn, can relieve some of the emotional pressure and help make the communication process more productive and enjoyable. Many couples find that knowing a therapist with whom each partner is comfortable, and whom they can consult periodically, is as important as having a good neurologist. To find out more, you can check out How To Maintain Multiple Sclerosis Relationships.

Multiple Sclerosis And Cheating

The Use Of Financial Resources
 
MS CAN BE a costly disease. Financial concerns are among some of the most common sources of conflict for any couple. MS associated costs, including medical care, the available disease modifying drugs, adaptive equipment, and professional caregiving help, can directly conflict with educational expenses for the children, a car that provides reliable transportation, and saving for retirement. These issues can be a major source of disagreement in a marriage, and they require patience, commitment, and good communication skills for successful resolution.
 

Multiple Sclerosis And Cheating

The Sexual Relationship
 
INTIMACY AND SEXUALITY can be profoundly affected by chronic illness. Of particular relevance here, however, is the potential impact of caregiving activities on the well-partner's sexual feelings for his or her MS-partner. Much of the help that well-partners provide involves intimate (but nonsexual) and sometimes unappealing contact. This might include assistance with dressing, bathing, or eating, and catheterizing or cleaning up after an episode of incontinence. Well-partners often describe themselves as "turning off their feelings" when they give that kind of intimate assistance.

Then, when they try to be sexual with their partners, well-partners sometimes find that they remain emotionally turned off and disinterested in physical intimacy. The caregiver's near-constant state of fatigue, worry over the growing list of responsibilities, and sadness over changes in the marital relationship have as much impact on the couple's sexual relationship as the changes in sexual function experienced by the MS-partner. These feelings and concerns need to be shared and discussed in order for the relationship to grow in a meaningful and comfortable way.

Feeling Cheated
 
MS CAN CREATE a deep sense of unfairness in a relationship, leaving one or both of the partners feeling cheated and angry. They may even find themselves locked in a contest over who has it worse. MS-partners tend to believe that their situation is the most uncomfortable, frustrating, and unfair, whereas well-partners feel equally trapped and disabled by an illness that is not even their own. These valid and intense feelings can be difficult to curb, and finding a positive way to deal with them is a significant challenge for many couples. This is especially true if the couple has few friends, family members, or professional helpers to whom they can or are willing to turn. Sometimes in the absence of other outlets, the built-up frustration and anger are directed at each other.

Many MS-partners have described the anger that they have about the disease and the ways that the anger becomes focused on the well-partner who can leave the house at will, decide what food is bought at the grocery store, and even determine when the MS-partner gets up and goes to bed. These MS-partners resent their dependence on their partners. Thus, the anger that a person with MS feels over the limitations imposed by the disease tends to spill over onto the partner who is providing much of the necessary help and care. The well-partner, in turn, feels unfairly targeted by the accumulated anger and resentment.
 
MS-partners who are severely limited in what they can do on their own sometimes feel a need to reassure themselves that their well-partners are truly there for them. They may test this with frequent requests for help or by calling out to their well-partners "just to check" where they are. Sometimes, the cognitive problems of MS can make it uncontrollably difficult for MS-partners to sort out what has to happen now and what can wait. This loss of impulse control can result in well-partners feeling trapped by a situation in which they are "on call 24/7."
 

Maggie Strong (whose husband had MS) and Jane Bendetson (whose husband was disabled by cardiac disease) of the Well-Partner Foundation write about how disabling it feels to become the working arms and legs for one's partner. These two writers and others have described the way that friends and family members seem to expect that they, as well-partners, will naturally, willingly, and successfully take up the caregiving role when, in fact, this is not always the case. These writers speculate that this expectation results from the fact that family and friends would not know what to do if they were asked to pitch in and help with the care. To find out more, you can check out Multiple Sclerosis And Cheating.