What is normal? It really can be anything we get used to. After living with a situation for years, we no longer see it as unusual. It becomes “our normal.” And so our perception of what is possible, even realistic, becomes distorted. After teaching special education for several years, I truly began to see all my students as brilliant. This was not just figuratively speaking. The absence of daily contact with other children in the mainstream skewed my perspective of what was realistic.
I noticed that this was also true, when years pass as you live with chronic illness. Whether it is a defense mechanism or just a distortion of expectations, well spouses and the chronically ill may be the last to change their expectations of the sick person as he or she deteriorates. Because of this, there is rarely an alternative in place or a plan of how to survive in a crisis. When the chronically ill are functioning and continue to be in the work force, planning for a crisis is even more important as these well spouses relate.
Libby’s husband was a pulpit rabbi. He continued to function as the leader of his shul throughout his illness. A ramp accommodated his deteriorating physical condition. He continued to be able to conduct services, officiate at bar mitzvahs and marriages and other life events. Although his voice was getting weaker, and he tired more easily, he just gave himself more time to prepare. This seemed to solve the problem.
And so when Libby’s son got engaged, it was only natural to assume that her husband would perform the wedding ceremony. Even after he was hospitalized for pressure sores, they were assured he would heal in time to be there for the wedding. Unfortunately, they never prepared for anything else, and so when Libby’s husband deteriorated to the point of not even being able to attend the wedding, they had no alternative in place.
Now, in addition to having to cope with the stress of a hospitalized husband who was getting worse quickly, Libby was faced with having no one ready to perform the wedding. The result was having someone officiate who barely knew the couple.
Barry’s wife Chaya was a social worker. When she was diagnosed with MS they joined a support group for young couples. This group decided they wanted to have several sessions on how to parent young children when you’re disabled and Chaya was the logical choice as facilitator. Barry thought it would be great for Chaya to have the stimulation. Maybe it would even slow the mental deterioration he thought he noticed of late.
The group was thrilled to have such a knowledgeable professional amongst them. And so the sessions began. Unfortunately Chaya’s mental deterioration started to escalate. Each week, her forgetfulness was more pronounced, she repeated herself more and more and made less and less sense. Her husband watched, embarrassed, as fewer people attended each time and those that did, looked at each other in confusion.
By the sixth session Chaya wanted to quit; she knew her talks weren’t expressing what she was trying to say. She was embarrassed and devastated. But neither she nor the group had prepared someone to take over just in case she was unable to complete the course. So out of a sense of responsibility she continued to try until one day no one attended.
Chaya, humiliated, told her husband she would have given up weeks ago if there had just been someone ready to take over. If they just had that plan B she would have saved herself the awful feelings she now had.
Hosts of weddings in large cities often give out the kibudim (honors) under the chuppah ahead of time so that people will not be taken by surprise. It is also common to prepare alternates for every brachah in case the person originally called upon is stuck in traffic. This is having a plan B so that everything goes off smoothly and without embarrassment.
As well spouses, there is something we can all learn from this to help our lives go more smoothly. If your spouse (who is chronically ill) is the one who always does the taxes, make some time for him to share his filing system with you, just in case you need to suddenly take over.
If your spouse is the one who handles all the financial situations in the house, make sure you at least have a list of names and phone numbers for all the professionals you use (from the accountant to the mechanic) so you know whom to contact when you need them, should your spouse become incapacitated.
If the sick spouse is a professional, make sure there is someone ready to take over for him/her should there be a need to back out of the person’s professional commitment for any period of time. It needs to be someone that she or he is comfortable with. In this way there will not be any compulsion to continue when she or he either can’t or shouldn’t.
Once there is a replacement ready, everyone will be spared the added stress and unnecessary embarrassment that may exacerbate the illness. Instead, everyone will be able to put all their energy into dealing with the deteriorating illness and its offshoots. Even if there are no signs of deterioration and you are sure the illness is stable, a plan B can be a real safeguard, just in case. It is the nature of chronic illness, after all, to deteriorate and have crisis follow crisis. Even if it is never used, just having a plan B can give you peace of mind.
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