But how do you suddenly change your role and not neglect the person you are caring for? First you need to realize that it is not neglect, but care of your ill spouse when you put support in place for yourself and make changes in your care giving routine that makes you less resentful. Everyone benefits; especially the person you are caring for. As you decrease your burden, your anger lessens and your relationship with your spouse can be more pleasant.
Evaluate your stresses. What gives you the most stress? Is your visiting the hospital or care facility every day making you angry about losing your own life and having no time for yourself? Are your visits becoming negative experiences for the both of you? Wouldn’t visiting less often, but keeping the visits enjoyable for you both be better? Which would you prefer if you were in your spouse’s shoes, an angry visit daily or a pleasant time together a few times a week? Taking a bit of time for yourself, instead of daily visits, could help both of you enjoy your visiting time much more.
Exhaustion from lack of sleep because of your spouse’s uncontrollable shaking limb or other symptoms of his illness is very common. Perhaps your exhaustion comes from not being able to sleep until his care-worker puts him to bed at night. Is sharing a bedroom, and therefore sharing the symptoms of your spouse’s illness making you angry and resentful? Perhaps separate bedrooms would help.
There is a tremendous emotional loss in no longer sharing a bedroom. It requires an acceptance of where you are in your marriage that you may have tried not to think about. But being able to sleep through the night and feeling refreshed in the morning may give you back more than the illusion you lost. It may make your days together easier and more pleasant.
If your anger is spilling over because you need to keep to your spouse’s schedule instead of having one of your own, there may be an alternative. When you finally get to go out as a couple and you have to leave early (even though you are enjoying yourself for the first time in a long time) because of his adaptive transit or care-giving times, resentment and anger at your spouse may result.
The anger is at the situation, but after experiencing this loss for years, the recipient of the anger can be your spouse. Do you have to drive him and/or accompany him everywhere he needs to go? Perhaps using a cab or care van to keep him on his schedule while giving you some flexibility to enjoy your evening is an alternative worth considering. Seeing you happier and more relaxed and relating to him with less anger will be something your spouse will value as well as you.
Using a care van can also help you avoid the difficult task (that gets harder with age) of transferring your spouse from chair to car, folding the wheelchair, putting it in the trunk and then repeating everything in reverse when you get there. The care van driver will not only deliver your spouse to the destination but will also take him into the destination. This is no small plus during excessive cold, snow, rain or heat.
Most well spouses are constantly on guard for changes in their loved one’s illness. Always ready to appropriately make changes in our care giving, as the need arises. Keeping the same watchfulness on ourselves, as caregivers, is just as important over time, but rarely done.
Making sure we can still perform the tasks we have done over the past decades, without harm to our health or mental wellbeing and without the spillover of anger or resentment is just as important to the sick person as it is to the well spouse.
But making changes when the well spouse’s physical or mental health changes is rarely done. It is certainly not encouraged by people around us. However, it is something that needs to be done. Without it, the care giving will begin to lose its care and may, G-d forbid, become abusive. Ignoring the changes that we have undergone can only create a situation that cares for no one.
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