Caregiving Issues with Non-caregiving Relatives.
When trouble strikes someone near and dear to you, you feel shocked, alone and helpless. You want someone to share this with you. Someone to comfort you, support you, and make you feel that things will somehow work out. Usually you expect family serve this role. After all, family is people you’ve known all your life, people who love you and whom you love and trust to help you. Usually family does rise to the occasion during the acute stage of illness or the beginning of your knowledge of the scope of disability. However when the immediate crisis is over, everyone returns to his “normal life” happy with the knowledge that you will be responsible for the ongoing care and they can rely on you to do the job.
Thus in the beginning of this saga, family is there for you. They know the pains both of you are experiencing, and since they are not cold hearted or uncaring they try to pitch in. The hands-on aid, however, dwindles and you get promises to help, promises that more often then not, are broken. The shock and the novelty have worn off and people start to call instead of coming over. Then the calls become more infrequent until they practically stop. Why does this happen? One reason is the “there but for the grace of God go I” syndrome. Then too, you are not as much fun as you used to be or even as interesting. You are so wrapped up in the caring process that you have no time to do anything else, certainly go anywhere else, or even keep up with world outside of your sphere. You become more and more isolated until your relationship is with your partner alone and your concerns are centered on his well being.
The retreat of family support is slow and insidious. The problem is a long term one. It won’t get better or go away. It is when friends and family realize this, they openly or tacitly back away and delegate the care to you. They appoint you chief custodian, provider, nurse, caregiver, or whatever title you choose to call yourself. They return to their own lives. It doesn’t matter if they continue to live in the same house or are three thousand miles away. The important issue is that they reviewed the situation, decided that they did not want the glory of being chief cook and bottle washer. The responsibility is delegated to you. They have abdicated and given you the throne.
Family members can find all kind of excuses to abdicate the responsibility.. But if the truth is to be known, they want to remain the power behind the throne. The day by day care and endless chores are all yours, but someone else wants to be the Prime Minister or Secretary of State; go to all the meetings, address the congress, meet with all the other heads of state and advise you of their decisions. Others want to be members of Congress, debate the issues and pass the laws. Others want to judge, hear the case and decide if the laws are justified or if the decisions of the lower court should be reversed. However, you are allowed to be the executive, deprived of all the executive powers. The Secretary of State, the Congress and the Judges, (from a comfortable distance) real or imagined tell you how to care for your charge.
This analogy may sound somewhat silly and far-fetched. The metaphors are puffed up, but this overstatement points out how pompous and righteous other family members can be. It also illustrates that they regard you as inferior to them and not nearly as wise. The worse part is that they have no idea how hurtful this attitude is to you.
Chances are that your relatives probably advise you of excellent well thought out suggestions. They may berate you or bemoan the idiotic way you manage. If only they “could”, they “would do a much better job”. However, after reciting all the important things they have to do, they concede, with a sigh (of relief?) that since you are the designated one, you will continue to muddle through your daily routine. It’s true; you don’t have much of a life, but that’s your own fault. You just refuse to follow sensible advice. Their suggestions would, in their opinion make life much easier for the suffering person. Although at this point it’s hard to distinguish whom that one might be – you or your charge.
What makes all this more difficult is the effect the absent Prime Minister seems to have on your partner. The longer a loved one stays away, the more stature he attains. Aunt Sadie who shows up one day a year to visit her “poor afflicted sister” is greeted with hugs and kisses and tears of joy. Brother John who flies in twice a year for five minutes is rewarded with a glowing smile. Those drop-ins or drop-outs depending on your point of view seem to be the favored relations, while you, the faithful, the drudge, the always there-when-I-need-you-person is never right, seldom complimented and often the object of abuse.
Absence in this case does not really make the heart grow fonder. What it does do is allow both parties to distance themselves from each other. For your partner, distance enhances the kind and caring traits that she remembers and dulls the characteristics that are annoying and grate on her nerves. As far as the far-away person is concerned, temper tantrums aren’t so bad when you aren’t subjected to them on a regular basis. Drunken sprees seem less threatening when you are not faced with the aftermath of violence or sickness. Absent-mindedness or the forgetfulness due to organic deterioration is not as horrendous when you don’t have to make sure that the gas jets are turned off or the lighted cigarette was not dropped and smoldering in the bed or chair.
Another device kinfolks use to convince themselves (and you, if possible) is that it is right for you to take sole care of your afflicted relative because you will profit in the long run. When dear old Aunt Sarah finally passes on, you will inherit all her worldly possessions. These may range from a large estate, to her rather comfortable home to her sterling service for twenty-four or perhaps just her Wedgwood bowl. Whatever possessions are left will probably be up for grabs when the time comes, but in the meantime that’s a useful rationalization for the rest of the family. This may be your motive but it’s doubtful that it is the sole incentive in the light of what we have already discussed. In most instances what ever you receive will be rather small payment for many years of labor. Figured on an hourly basis, it may come out to well under minimum wage. For the rest of the family, however, as long as you are taking care of the unfortunate relative, the estate becomes larger and larger, the house worth a fortune and the Wedgwood bowl a priceless antique. Of course by the time you claim your prize you, too, may be a worn out antique. It is also possible that when the time comes the family will assert their rights and squabble after the “fortune”.
Let us move on to the insurmountable rationale–the geographical cop-out. With a deep sigh kinfolk say, “I would love to help you out if only I lived closer, but a thousand miles is so far away. I’m lucky if I can get there once a year”. The actual mileage doesn’t really matter since the geographical cop-out can encompass any distance that is further than next door. The distance reflects an attitude adopted by others to defend themselves against their own feelings of kinship obligation. As a wise old Grandmother I know whose English is rather colorful and expressive says “Where there’s a want to there’s a can”. Distance can be shortened or lengthened depending upon what one is motivated to do. Those who cling to the geographical excuse are convinced it is valid, even if you are not.
Perhaps your family doesn’t seem to fit in any of these categories. However, if you think about it, you’ll be sure to discover that whatever pretext they use the excuses are designed to achieve one major purpose. That purpose is to convince you that caring for someone else is exactly what you ought to be doing. It relieves everyone else of the responsibility and allows him or her to go on with his or her own life convinced that your partner is receiving the best of all possible care. They are right about that– indeed he is.
Gloria Sprung
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