THE PSYCHOLOGICAL BURDEN OF LONG TERM CARE

Everyone knows that providing long term care for seriously disabled or dying family members is a huge psychological burden on the caretaker.  I have often marveled at those who do it professionally for a living.  Somehow they have the personality make-up, emotional stamina, training, and discipline to care for the physical, social, and mental needs of those who need such care.

But some people do not have these necessities.  If they do it for a living and can’t properly perform their duties, they usually don’t last long on the job.  They will struggle with their inadequacies for a while, but usually find another line of work.

But family members can’t do that; they can’t leave their loved ones and go elsewhere—not if they have any dedication and integrity at all.  So they usually hang in there, do what they can—which is often not much—and get angry, both at the patient and themselves for feeling inadequate and frustrated.
A specific case history will illustrate.

Betty and Bob arrived into their eighties in fairly good health, able to care for themselves and be of service to their rural community.  However, as a result of an auto accident at age 84, Betty suffered severe injuries and began to deteriorate gradually.  And Bob was not the type of man who could assist her very much.  He could not cook, clean house or attend to the many social functions that Betty had formerly organized.  As a result they became more isolated from their community, being unable to fulfill their former roles.

Betty had been the unofficial “social worker” in her area.  She would visit the sick, take them meals, drive them to doctor appointments, or anything else they needed.  Doing this kind of service fulfilled her religious beliefs and gave her a great deal of satisfaction.  She could no longer do many of these things.
Bob did what he could to help his wife, but he increasingly relied on his son and daughter who lived nearby.  Being retired, he had developed hobbies of making hand-made furniture and simple musical instruments.  As he aged, he too had to abandon these activities.  Increasingly, he and Betty spent more time staring at the news and weather on TV.  With fading eyesight, reading had become a chore.  They had a son and daughter who lived nearby, with another son and daughter who lived in distant cities, who were of little assistance on a day to day basis.  They did not have long term care insurance.

Gradually, the nearby son became angrier and grouchier, feeling he did most of the caring for the parents, feeling the others didn’t do their fair share.  The close daughter visited them a lot, but soon became frustrated and angry at her brother, who didn’t seem to appreciate her efforts, which she felt were all she could do.  The two sisters commiserated with each other via phone, ganging up on the increasingly angry brother.  At one point they managed to hire a person to come in a few hours a day to care for them, mainly to do cooking and cleaning.  However there was constant disagreement over this caretaker, so several others were hired, who proved to be inadequate, so they went back to the original lady.  The absent son was of very little help, having employment and drinking problems.  The best he could do was visit occasionally when sober.

Betty died at age 87 and Bob became more feeble.  He had to deplete considerable amounts of his estate to pay the private caretaker and some health-care costs.  As he aged into his 90’s, he became more feeble and helpless.  The nearby son took on more caretaking duties, trying to conserve the cash value of the estate, and becoming angrier and grouchier.  The four children were barely talking to each other and their relationships remained strained until Bob finally died at age 96.

After a reasonable period of grieving, friends noticed a great improvement in the four children’s relationships with one another.  They were friendlier, more helpful and civil to each other.  It was if there had been no problems at all!

What do we make of all this?  The lesson that I would suggest is that if children have to provide the day-to-day care of their loved ones, they will experience considerable emotional stress, which will be played out on other family members  in the form of anger, withdrawal, negative rationalizations, and some of the other defense mechanisms of which we have written in this series of articles.

While nothing can be perfect in situations like this, the best help that this family could have benefited from would have been to have good long term care insurance that would have provided the type of professional care that Betty and Bob deserved, care that would have been competent, experienced, and professional.  The estate would have been better protected and much of the stress on the children would have been alleviated.