When MS Means Mighty Stubborn
“I’m glad my MS isn’t too bad. My life is too busy to have it interfere!”
These words could be uttered by many individuals with MS, regardless of how severe the affliction has become in their lives. Caregivers may shrink in horror whenever they are said, dreading the inevitable outcome of an event preceded by this statement.
Husbands may growl and curse, mowing lawns and doing other chores around the home, refusing to admit that they may be putting themselves in harm’s way. Stubborn to the last, arguing with family, the unsinkable MS patient may end up in an emergency room when MS double vision meets hammer and nail.
The same is true for the female side of the equation. Rather than delegate chores to family caregivers, she will forge onward, through laundry, floor cleaning, and other activities, only to find herself withered before day’s end.
When caregivers attempt to slow down the “busy” MS patient, the most important resource they have is their bond with the loved one. By communicating how important their relationship is, the caregiver may be able to get the MS patient to be the one to call a halt to “over the top” activities.
Diplomacy only goes so far in dealing with anyone experiencing a change in their life and body’s habits. Tactful reminders about health, promises made, or doctor’s orders can only rasp on the nerves of both parties after a time. Sometimes, being direct about the relationship and what it needs to maintain continuity becomes the order of the day.
“Human beings are not things needing to be motivated and controlled; they are four dimensional — body, mind, heart, and spirit.” This statement comes from Dr. Stephen R. Covey’s “Eighth Habit,” a follow up to his “Seven Habits of Highly Effective People.”
The bitter experiences care giving can offer sometimes fall into the “motivate or control” category. Doctors, family, even friends and strangers expect the caregiver to “deliver” on a number of levels. Not only is the patient supposed to be cared for and about, it’s sometimes an occasional expectation that the patient not present a problem. The neat and tidy world the caregiver is expected to maintain is a mighty illusion crafted by humanity’s fear of illness.
Dr. Covey’s fourth habit, “Think win-win,” brings a sense of power to both caregiver and patient. Multiple sclerosis may deteriorate the body and mind, but sufferers of every degree still have an idea of what they want for themselves. Caregivers and loved ones will have to work at communicating individual and mutual needs, but the rewards come in the form of deep stress relief for both parties.
The man who rages over being “allowed” to do the lawn can be approached with a direct, win-win caregiver strategy. He may have never enjoyed doing the lawn before, found ways of ignoring it or avoiding it, but once the MS diagnosis was given, he turned into Lawnmower Man.
Caregivers can voice what’s going on in their minds when situations like Super Landscaper arise. “You never enjoyed doing the lawn before, and we talked about hiring someone” confronts both truth and offers a solution. Following it up with, “If someone else does the lawn, then we have more time to spend together” offers not only truth, but puts the relationship first.
Well meaning individuals may offer comments that put the burden on caregiver and patient. Comments on how overdoing it will upset the caregiver, or make the patient more ill, do not create the win-win situation. Multiple sclerosis has a variety of symptoms and levels at which the person will function. The wise caregiver spots the cycles and uses relationship-focused statements to help guide their loved one to establish a routine that enhances the relationship.
Relationship-focused comments work between parent and child, and vice versa. It is not about a “carrot and stick” philosophy, either. Patients with MS have to deal with the “if you do X, then you’ll get Y result,” often following through with little or nothing accomplished. On some occasions, professional caregivers may “guilt” the patient into following orders, reminding them of family obligations, how their illness stresses the caregiver, or any other permutations on this theme. End result: patient stress and more caregiver stress.
Both caregiver and patient have heard the phrase “you are not MS” repeatedly. An unfortunate truth is that while the individual is not the disease, the disease affects their body and often rights of choice. Caregivers have been given custody of their loved one’s trust in addition to handling various affairs, but the original relationship between the MS patient and caregiver remains. Remembering that relationship and putting it first, both verbally and by action, can offer an independence for caregiver and loved one.
A Winning Principle: Four Ways to Win
Dr. Covey’s fourth principle, “Think win-win” encourages a new type of negotiation that applies to personal relationships. Many of us focus on “the right thing,” “my way,” or some other aspect of a problem that tips the decision scales. Instead of convincing ourselves that there is a single correct way, we can entertain more possible “right” answers, and present more choices for caregiver and loved one. More choices make for better, and mutual decisions.
Caregiver and loved one can use this brief question list to open dialogue and prioritize what is really first order.
One thing I insist on doing for myself:
One thing I hated doing before but push myself to do now:
One thing that steals time from our relationship:
One thing we can do as a team that helps our connection:
For example, a wife may insist she dress herself daily. Depending on the degree of compromise, this may seem irrational to a husband who has to get ready for work as well as deal with other morning issues. One spouse may not be a “morning person,” and this is another adjustment to make. However, if we attempt to apply the win-win strategy, we’ve made progress toward reducing caregiver stress in the long term. The spouse who insists on dressing themselves can have their clothing laid out and go about their business while the other handles the affairs that need immediate attention. It may take the patient longer to dress, but if they are not involved in other activities, it makes no sense to rush them through one process, only to have to sit by and watch while everyone else is “functioning.” At some point, the person can be checked on and mainstreamed into the bustle of the day. If a patient knows time limitations, those can be set in advance. A caregiver may find that the patient will say “You know, I could use some help,” and the struggle for independence becomes a choice for assistance.
Admitting there were activities that were undesirable might be easy when health is not an issue. Both caregiver and patient can reflect on the questions, and may find that they dislike the same activity (allowing them to delegate this to someone in the family, or pay for the service). They may also find they were doing the wrong chores to begin with. The wheelchair-bound MS patient may not mind folding laundry as a joint (or solo) activity, while the caregiver is doing the much-despised task of cooking.
Relationships can have time stolen from them in many ways. As dialogue progresses, an MS patient may find that asking for help increases time with the caregiver. Both parties may find that having someone come in to help with the AM or PM routine would allow for less stress on the caregiver, who may feel they have to “do it all.”
Doing something as a team isn’t confined to one task. Laundry, helping kids with homework, making phone calls can be team centered. The myth that once an individual is diagnosed means an uphill battle for who does what can be destroyed one demand at a time.
Quizzes, lists, and help topics only go so far in addressing root issues. You or your loved one may not enjoy this type of dialogue, but it is worth a try, if you phrase it in the context of conversation (if that style works better for you).
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