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The ABCDEFG's of caring for a dependent loved one in decline.
Whether you became a caregiver gradually or all of a sudden due to a crisis. Whether you are a caregiver willingly or by default, many unwanted emotions surface when you take on the job of caregiver. Ah! If only we were "perfect," we would not feel:
AMBIVALENCE: Wanting-not wanting to caregiver. Allow yourself to feel both sets of feelings... there will be good days and not-so-good days. Be assured, these feelings will not last, just as clouds passing over the sun.
ANGER: Anger and frustration are normal parts of being around someone who needs help on an ongoing basis, who may not be accepting of that help. It's not always possible to be in complete control of your emotions...anger "just comes out" sometimes. Forgive yourself! Walk away. Give yourself a "time out', take slow, deep breaths...3 or 4 more PRN. Call a caregiver friend; in our DayBreak Support Group, we use something called the "rant line." (email me for details) It is of utmost importance to "get it out of your system." Anger can evaporate when given a "voice" instead of taking it out on others.
ANXIETY: Feeling like things are out of control and not knowing how to bring them back into control can produce feelings of anxiousness. Anxiety can present as a "short fuse," an impulse to run away, experiencing heart palpitations, difficulty sleeping, or having the urge to cry. STOP. Breathe (3 deep inhales, slow exhales, more if required.) Take a walk, get out of the house, Make some tea... give yourself a hug, a long one!
BOREDOM: It is so easy to become bored when you are stuck at home taking care of someone else and not doing the things that fulfill your own wants and needs. Respite can help; a few hours away to socialize, take a walk, or go shopping. from time to time. Planning in order to make that happen can be challenging; perhaps a barter with another caregiver might be possible. When at home, planning a carving out of "me time" may take some creative time management, but it is well worth the effort to have time for yourself. Precious "me" time can help increase your resiliency and patience.
CRANKINESS, IRRITABILITY: When tired and stressed out, it is so much harder to stay in control of things we say and feel. This is your "early warning signal" that a break is called for. It is essential to take a break, get some rest, keep a journal, and talk to an understanding friend or professional to gain some equilibrium.
Above all, have compassion for yourself! Make an effort to be your own best friend and make an effort to "normalize" negative reactions at times like this... "Of course I'm cranky and irritable right now; I'm off center. I'll get back to center at some point."
DEPRESSION/SADNESS: As a caregiver, you are at risk for depression. It can be evidenced as hopelessness, helplessness, insomnia, or not wanting to get up and face the day. Depression is treatable and should be taken seriously. Professional help is available; find a therapist or counselor who understands caregiving.
Ask for help from friends and family. Exercise can help considerably.
DISGUST: Having to toilet someone can be difficult and challenging for caregivers, all the more so when it is a parent or loved one of the opposite gender. Cleaning up as the result of incontinence can be unnerving and uncomfortable. Poor hygiene on the part of the care receiver and cleaning up vomit can cause feelings of disgust.
The hardest thing about accepting our revulsion is that the care receiver is not in control of these behaviors. There are resources to aid you in dealing with bathroom problems, such as a webinar entitled "MOVING BEYOND THE LEAKAGES: PRACTICAL STRATEGIES TO MANAGE INCONTINENCE."
EMBARRASSMENT: Rude comments, refusals to bathe, now with body odor, disheveled appearance, making a public scene. It is so easy for us to feel responsible for the behavior of someone else and to feel as if it is all our fault. Some caregivers have made up cards such as: "My loved one has dementia and can no longer control their behavior." It is crucial to keep in mind, however, that we cannot/do not control the "public's" reactions to our loved ones. Adopting detachment can be a very powerful tool. After all, our focus is, and should be, focused on our loved ones, our paramount concern. Their comfort and immediate needs trump those outer concerns.
FEAR: "What if something happens!?" Scaring ourselves with the "what if's" can be paralyzing and keeps us from enjoying the "what is." A healthy dose of "even if's" is crucial. "Even if " calls forth an assurance that you've done all that you can do. Therefore, contingency plans are a must: Having a backup caregiver if something happens to you. Having a DNR form completed and posted on your refrigerator. Plan for medical emergencies. Contact information for relatives and friends available. When fear of the unexpected (or dreaded) projected future looms ahead, it is helpful to talk to someone who can give you a needed perspective.
GRIEF: Watching a care receiver decline and not being able to do the things that used to be easy and natural is sad. We also grieve for the care receiver, the person who used to be. And the altering of our relationship with that person. Anticipatory grief presents another form of grief that holds an "advanced" type of grief for the losses yet to come. We often need to grieve that loss daily, or it comes out as something else. With the presence and mindful awareness of unconditional love, sometimes simple gratitude for what is now can allay the grief for what is lost. There may come a day when the "here and now" of time shared with our declining loved ones could well be a portion of the "good old days," when they were still here with us.
GUILT: Guilt is quite common among caregivers—guilt that you're not doing enough, that you should be better at it, that you just want it all to end. Guilt that we wish our caregiving days were over and that we were free again. Guilt at having lost patience when overstressed. Seems we set an impossible standard for ourselves when we fear we are not meeting our (or another's) expectations. If you fear that you are not doing enough, being enough, or doing it "right, imagine if you weren't there! Look at the difference you make, each and every day! PLEASE! Be kind and be compassionate to yourself!
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