But what of the chronically ill themselves? Those that have the mental ability need to be tuned in to the changes in their care-giving spouses and recognize when things become too hard for them. They need to encourage change and support the idea of outside help. Realizing and acknowledging the difficulties of care giving goes a long way to helping the caregiver continue in his role without resentment and anger.
Remaining independent for as long as it is safe and possible, while accepting the growing limitations the illness places on you, is very painful, but makes your caregiver’s job easier and the relationship healthier. Working together and caring for each other keeps a marriage strong whether there is illness living in your home or not. Knowing when to stop doing things, knowing when it is time, for safety sake, to give up your independence, is paramount for the chronically ill. It makes the job of being cared for so much easier.
Driving, or the need to know when it is no longer safe to drive, is one of the biggest issues. I have met caregivers who have had to hide the car keys from ill spouses who refuse to acknowledge that they can no longer drive safely. Despite countless accidents and near misses, many chronically ill partners refuse to acknowledge their deteriorating driving ability. They put their family, spouses, children and grandchildren, in severe danger of literally losing their lives as they refuse to acknowledge that they can no longer drive safely.
I have known spouses who have begged their doctors to ask the Department of Motor Vehicles to retest their partners because the issue has become so contentious between them. The doctors are not always in agreement; Motor Vehicles are not always compliant and the well spouses are then left to deal with the dangerous situations on their own.
One well spouse related, “I know it is dangerous for him to be driving. He may kill himself or someone else. I have talked to him, hidden the car keys, and asked that he have another driving test. No one listens. All I can do is refuse to allow my children or myself to be in the car when he is driving. And pray that he hurts no one.”
For many productive ill spouses, no longer being able to work at the level they once did leads to denial. They may give up family life, all socializing, and give up all previous household responsibilities that they once did as they spend twice as many hours working in order to produce what they used to accomplish in half the time.
Insisting they can still function at the same level as before the illness progressed, some of the chronically ill even risk being fired instead of opting to go on disability. They are blind to the burdens this is putting on their family while ignoring the potential for the financial ruin. Refusing to accept their deteriorating condition, some of the chronically ill hide their growing limitations from their employers.
One well spouse whose husband was a rabbi refused to explain to a congregant who was sitting shiva that he could no longer climb steps (she lived in a third floor walk-up) but instead allowed her to think he would not make a shiva call to her home, leaving his family to deal with the fallout and putting his position at risk.
Instead of dealing with his diagnosed sleep apnea, one well spouse’s partner refused to use his breathing machine at night because it was uncomfortable. She had to stay awake to monitor his breathing and almost lost her job because she kept falling asleep while teaching.
Another was told to walk a small amount every day, while her husband followed her with a wheelchair. She was told to increase her walk each day by a few yards until she was unable to take another step and only then, sit in the chair to return home. This was the only thing that would keep her out of the wheelchair for a bit more time and keep her muscles functioning.
She refused to follow the exercise therapy and her condition quickly deteriorated so that she needed the chair full time. She seemed to be blind to the burden her being in the chair full time placed on her family, which included major household renovations and the accompanying expenses.
Care giving is hard. Few marriages survive, even when the couple stays together. Resentment grows as anger sparks, burning what used to be loving compatibility. It is only when the care giver and the care receiver both work at acknowledging their needs and growing limitations, and work at solutions that work for them as a family, do they have a chance at survival.
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