(Names and situation changed as requested)
Well spouses have often discovered that their friends and relatives, despite their closeness to the situation, often don’t realize the tremendous emotional impact living with chronic illness has on the family. With the best intentions, suggestions, ideas and criticism are offered, based on the non-experience of those with healthy families. Even when the good intentioned get a taste of the difficulties, it is sometimes not enough for them to then identify and understand what the family of the chronically ill must face on a constant basis.
Baruch’s wife was in long-term care. He visited her as often as he could during the week. But he still had young children at home and was determined to give them as normal a life as possible. The care facility had a room that housed families for Shabbosim and Yom Tovim. Baruch took advantage of this periodically. Initially, when he first placed his wife in the facility, he and the children went there every weekend. However, after a few months, Boruch realized that spending every Shabbos and yom tov in the facility was depressing his children and that they were coming to dread Shabbos. While their friends were enjoying B’nos and Pirchei on Shabbos afternoon, they were watching their mom being spoon-fed. When everyone else was celebrating Shabbos with their families and friends, they were eating their Shabbos meal with strangers all of whom were visiting their loved ones in the facility.
Boruch wanted his children to feel close to their mother. He wanted them to develop a sense of responsibility toward her care but he was afraid that the constant visits were robbing them of their childhood and putting their future observance at risk. He didn’t want Shabbos to be a time they hated and yom tov a time of dread. And so Boruch reached a compromise. He would spend Shabbos with his wife twice a month; on one of those Shabbosim the children would join him and the other Shabbos they would spend with his sister. The other two Shabbosim they spent as a family, with friends invited over and time to join the Shabbos afternoon groups. Over time, Baruch saw a change in his children and he knew that while this compromise might not solve the problem, it would help to put his family back on track.
But Boruch’s decision did not come without cost. Criticism was plentiful from friends and family. He was told he was teaching his children to neglect the needs of their mother and that he was being selfish. What amazed Boruch the most was that one of the people who was most direct in voicing the criticism of his lifestyle was the wife of the hospital chaplain. The chaplain ran Shabbat services at the local nursing home and hospital. He read the Megillah there on Purim and sometimes stayed over at each facility. Yet his family rarely joined him on these occasions. His wife and children stayed home opting to give their children a “normal” Shabbos with friends and family.
This year, the chaplain was asked to spend Pesach at the facility and run the Seder. His wife joked that she always had hoped to experience one Pesach somewhere where she didn’t have to prepare and could spend Erev Pesach just relaxing and finally know what it felt like to spend the Seders being served. But the hospital was not the place she dreamed of. She mused that she needed to be more careful of what she wished for and was concerned about how her children might feel about spending the two sedorim, and two full days at the facility. Relegated to spending oneYom Tov in the manner she had verbally imposed on Boruch gave the Chaplain’s wife a lot of concerns for her self and her children. But, it did not change her opinion on what Boruch should do. As a matter of fact, she felt it gave her opinion more authority, feeling that she now had a well spouse experience. Even though her children rebelled and said there was no way they would ever spend Pesach there again, she still insisted that Boruch was remiss in not spending every Yom Tov and Shabbos at his wife’s facility with his wife and children. After all, her oneYom Tov there, she said, hadn’t been so bad. Interestingly, she never spent a Yom Tov there with her husband again.
No matter how close people get to sample the life of those living with chronic illness, it is only a sampling. Opinions don’t change easily and righteous indignation often remains unchallenged. Well spouses and their families must live in a manner that makes sense for them without waiting for or relying on approval from those around them. Wishing people had a taste of what we go through in order to help them understand our life doesn’t change opinions and sometimes just makes them feel they are more justified in how they feel we should act. Even when our life is sampled, the experience is not enough for people to understand that our life is more than a sample – it is forever.
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