One of the big responsibilities of a successful caretaker is the proper nutrition of the patient. Often the disease or the treatments or both affect a person’s appetite. It is oh so important that the patient gets proper nutrition. This involves finding high caloric foods that also tickle the palate of the patient. It usually means eating small portions every two hours. It also means being very patient in the giving of food to the patient. Medical supplements such as Ensure and Sustecal can be helpful. For those who can’t tolerate milk, Ensure Clear is a viable option. Experimenting with different fruits, vegetables, and soups is highly recommended.
Frequently, treatments cause severe nausea. I did something for my father, a”h, that proved very helpful. I went to a sophisticated candy store and bought a few of every type of candy. I had my father try all of them and he found one chocolate candy that gave him relief from the nausea.
Sunlight is very helpful in lifting the spirits of a person. Whenever you can get your patient out and into the sun, do so. It is also a very big relief not to be cooped-up in the house all the time. Exercise and fresh air are almost always just what the doctor ordered.
There is a strong temptation to run to the hospital at the slightest hint of an emergency. More often than not, the hospital is the worst place for a long-term patient. When a weakened person submits to the hospital regimen, they often stop eating (they get it intravenously), they stop going to the bathroom (they use a catheter), and they stop walking or even sitting. Sadly, after a long hospital stay, they might never regain the use of these physical mechanics. Try to resist the urge to run to the hospital unless, of course, there is real danger. Developing a relationship with specific Hatzolah members who are familiar with the case can be very helpful in this area. Also make sure to consult your main physician as to when you must absolutely drop everything and run to the hospital.
For many serious conditions, regular testing such as CT scans and MRIs are a part of life. They are very scary, for each one is like a mini yom hadin, Day of Judgment. The caretaker should make sure that the patient never goes alone for a scan. They should also try to fast-track the results of the testing for it is very nerve-wracking to wait for the results of a test. I once heard Rav Gifter, zt”l, zy”a, speak to a large group of doctors. He told them in no uncertain terms that if they know the results of a test before Shabbos it is criminal not to share them until after the weekend.
A caretaker must be careful not to become a jailer. On the one hand it’s normal to be super-worried about germs, for catching a cold or infection, (a real worry since often their immune system is compromised), could mean stopping treatment or a trip to the hospital. On the other hand, you want to give as much meaning to life for the patient as possible. Attending a simcha or a reunion or just going to the grandchildren can inject light and meaning to a desperate situation. Compromising by having the choleh wear a nice pair of white gloves (if we are talking about a female), and agreeing not to hug and kiss people, and capping the visit so as not to be too stressful are sensible compromises. Remember there’s nothing better for one’s emotional wellbeing than giving them something to live for.
Since caretaking is a twenty-four/seven occupation, the smart caretaker needs to learn how to delegate often and wisely. Save your strength and time for when you are needed most. Never wait on line in CVS; get eager friends to do that. Don’t shop for the fresh avocado and cantaloupe; get others to take care of it. If there are children, give them jobs to do, it is their privilege as taught in the Fifth Commandment. If it’s the wife that is ill, make sure you get ample financial assistance from bikur cholim and other organizations. Don’t be shy about taking assistance. If the house isn’t clean or the food isn’t plenty, the choleh and the whole family will suffer. Yidden need zechusim; let them help a legitimate cause!
While the caretaker’s thoughts are focused on the patient, they must remember to take care of themselves as well. To have strength to help someone else, you must maintain proper eating and sleeping. Someone who is eager to help should be made responsible to take care of the food supply of the caretaker. Sleep is more challenging since, when someone is ill, their needs don’t respect the clock. If possible, the approach is the same as a mother who takes care of an infant. Namely, sleep when the patient sleeps. When this is not possible, a rotation of trained people needs to be requisitioned to spell the caretaker so they can get suitable sleep. Sometimes an aide can serve in this role. However, if there are life threatening circumstances, it is likely that you won’t want to rely on an unrelated secular aide. Included in taking care of oneself is the need to take a break and get away for a little. The patient will be served better when the caretaker comes back refreshed and ready to be of assistance!
Often when caring for an aged parent, the task falls on one child who is geographically convenient. If this is the case, the other children should make sure to pitch-in often to give the primary caretaker a break. If the family who is doing the hard work has their livelihood interfered with, the other children should all contribute financially. Often they can use their maser if they need to. In some situations, it is not a geographic or economic situation, but simply one of the children who “steps up to the plate,” while the others just don’t! This can lead to a lot of hard feelings. The family who is doing the mitzvah should thank Hashem for the zechus rather than squander family ties. Often the other relatives are not capable or their spouses are not tolerant. Hashem keeps the score and will reward those that help their flesh and blood in their time of need. Don’t spoil the glorious mitzvahs with sibling rivalry and hatred.
When bringing an aged or sick parent into ones married home, there are unique challenges. The spouse who is taking care of the parent needs to be careful not to neglect their spouse or their children. The balancing act between the mitzvah of kibud av v’eim and sholom bayis is indeed a delicate one. A Rav should be consulted if the roll of a caretaker is invading on ones sholom bayis. A similar tug of war occurs when caring for an aged parent and at the same time managing a household of children. Once again, a Rav should be seen for guidance if the children are acting out in resentment because of the necessary preoccupation with the needy parent.
If the patient is a spouse, there are unique challenges. It is important for the caretaker to constantly reassure their mate that they are not a burden and that they still love them. If it’s a wife, it’s important to tell her that she is still beautiful. If there is hair loss because of chemo, this is especially important. Beautiful wigs and chic tichels and snoods do wonders. Severe weight loss to the point of emaciation makes such protestations challenging but Hashem gives siyata d’shmaya when we do the right thing. I found it helpful to tell someone who is traumatized by chemo hair loss that they should think that with every hair that comes out it signifies that the disease is departing as well.
There can arise a very specific challenge when caring long term for a spouse. The caretaker takes on the role of a disciplinarian. For example, with getting enough sleep, taking treatments, and not catching germs. This can lead to a scary condition which I have labeled “caretaker hostility,” when a patient becomes angry and hostile to the caretaker spouse. It seems counter-intuitive since the caretaker is putting their life on hold by caring for their spouse. But the patient feels scared and trapped and unhappy and transfers all the frustration onto the one who is stifling them. I have heard from a top oncological psychiatrist that this has actually resulted in many divorces. The best case in such a situation is for the caretaker to take a step back, bringing in others to give temporary support until the marital equilibrium is restored.
In Rosh Chodesh bentching, we ask Hashem for chaim aruchim, long life. The question is, “Why don’t we ask for chaim shel chodesh, life for a month, since in the next Rosh Chodesh bentching we will again ask for long life? A beautiful answer is that we are asking Hashem each month that we should feel no lumps, experience no dizziness, and have no scares that would threaten our knowledge that we have ahead of us a long life. May it be our fate that we and our loved know no scares, and be blessed with long life, good health, and everything wonderful.