Last week I came across a reader’s comment to a post on caregiving stating that she often found herself so angry and depressed by her responsibilities that she no longer cared about living.

Another commenter tried to shame her and stated that the depressed caregiver should not feel that way because it is an honor to care for someone else. While I strongly agree that it is an honor to care for someone else, there are a variety of emotions that come with caregiving, and it is acceptable to feel every single one of those emotions. Millions of caregivers are struggling with their feelings, including guilt for feeling the way they do. Because this country relies so heavily on its unpaid caregivers, to the tune of 44 to 65 million of them, it is imperative that we support them in all of the good, bad, and ugly emotions, so that we can help them to continue in their work without adding to their stress. It would be a nightmare if all of these caregivers walked off the job.

When I was a caregiver, there were times when I felt so unappreciated and overworked, tired and pulled in too many directions, that I fantasized about my own demise.

“If I got diagnosed with a terminal illness today, I would be okay with it,” I would sometimes think to myself. Then all the conflict, both internal and external would be over. It was not that I didn’t like what I did. It was not that I didn’t care deeply for my friend who needed me. The demands just got to be too much sometimes. I never told anyone how I felt in those dark moods because I feared I would sound like a monster. Mostly I felt that what I did was an honor and a privilege and I said those words often but occasionally those were not my feelings. Unlike many caregivers, I was fortunate to have a lot of people to talk to so I could have tested the waters and been honest about my negative emotions. Looking back, I think I would have been supported. For a large number of caregivers, however, there are few people to talk to in their world. They are cut off from friends and family; for these caregivers, online forums can be a lifeline. Social media and discussion boards can be a place to unburden and find connection with people in similar situations. For those who are isolated they can have conversations with online friends from around the world. This social setup can have tremendous value to people, alleviating loneliness and providing problem solving ideas.

When a caregiver comes to a forum looking for help and a chance to vent, it can drive them back into isolation if they are reprimanded by their fellow caregivers.

Tearing someone else down does not make you better. There are plenty of positions available so there is not a job shortage for which you need to compete. You are all on the same team but you do not necessarily have the same circumstances. Some people are dealing with exceptionally challenging illnesses, or complete lack of support or respite. I was always thanked profusely for what I did but some caregivers never hear that. Some are abused by their loved ones. Some are watching their hard-won careers and savings dwindle away. Some are sick themselves and yet still provide care. You caregivers are all doing the best you know how to do, most without any formal training. You are cleaning, ministering, laundering, phoning, scheduling, listening, researching, holding, loving. All under the pressure of time, and with the knowledge that you may be devoting yourselves to a losing battle. Sometimes in your pain you want to turn to another caregiver and whisper, “I am not happy. I feel unappreciated. I feel resentful and impatient.” The last thing you need to hear from a fellow soldier is, “Your feelings are bad. You should be ashamed.” What you need to hear is, “I understand. I feel angry too sometimes. Tell me about it and then I’ll help you get back up on the horse.”

People often say to caregivers, “Let me know if there is anything you need.” If you cannot provide hands-on assistance with their duties, my suggestion is to be thoughtful of caregivers and listen to them without judging. Be supportive. This advice is especially targeted at caregivers, current and former. The demand for caregivers will continue to grow. We want to boost those who are facing conflicted emotions, let them know their feelings are normal, and praise them for all they do.

Taking care of our caregivers will help us to preserve our front-line team whom we rely on to meet the demands of our growing aging population.

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3 thoughts on “Caregivers need support for their feelings

  1. Hi. First let me say how sorry I am for the loss of your mother’s former self. It is devastating to watch such an amazing and strong woman change into someone so dependent. You are grieving because she is no longer the rock you have known all of your life. It is okay to feel sad and angry. I applaud you for recognizing that you are beginning to experience caregiver burnout. It is a common side effect of caregiving and some caregivers don’t ask for help until they have very serious problems.

    I don’t know all of the details in your particular situation. Are you the only person caring for your mom? Is there anyone else who can help you? Can you afford to hire some help for your mom? If someone cannot help with the hands-on caregiving, can they help with preparing meals for you and your mother, or buying groceries for you, or with cleaning the house? As you well know, dementia tends to progress and the demands on you will only increase. Any helpers you can start bringing on board now will make your life a little easier in the future.

    If you have not already done so, you should contact the Alzheimer’s Association. They have a number you can call 24/7 to speak to an actual person who will listen to you or help you with advice. If your mom is up at 3am and wandering the house and you feel like you are about to break from exhaustion, you can call them. They will offer you suggestions on how to deal with her at that very moment. Here is their number (1.800.272.3900). Please call them. I promise you there isn’t anything you can say that they haven’t heard before. They will not judge you or make you feel bad; they will try to help you.

    Taking care of someone with dementia is one of the most challenging types of caregiving there is. No one can truly understand how difficult it is unless they have done it. The Alzheimer’s Association has an online support group for caregivers like you. You can find friendship and advice there. You might discover that you are able to offer advice to other caregivers as well. Here is the link to join the group https://www.alzconnected.org/.

    Physically, you need to try to take care of yourself. Everyone will tell you to eat right, get exercise, and get plenty of sleep. Most caregivers find those are difficult or downright impossible goals. But treat yourself well whenever you can. You deserve it. And do avoid abusing alcohol or drugs to deal with your emotions. It won’t make your stress go away.

    I like that you are searching for spiritual comfort! Turn to whatever source works the best for you. Whether it is a church, a book on new age concepts, gospel music, or meditation, use something to help you gain perspective in your life. I am no longer a caregiver but have many demands on my time so I listen to spiritual books on my phone through Audible http://ow.ly/X2uwq. I can listen when I’m cooking, folding laundry, or driving in the car. It is very uplifting and helps me to step away from my stress for awhile. Find a way to fit spirituality into your routine.

    You anger has me concerned. It isn’t clear from your comment if you are yelling at your mom or just yelling, in general. It’s very clear that you love your mom but all of the pressure you are under is taking its toll on you. If you cannot leave her safely when you are angry here is what you can try. Step outside for a minute and do 10 jumping jacks. Count to ten slowly before speaking. Press your face into a pillow and scream into it out of earshot of your mom. Call the Alzheimer’s Association phone number or go online to their chat group. It is really important that you try to get your emotions under control for your own peace of mind both now and in the future. If you really feel that you cannot control your anger, you should call the hotline immediately and let them know what is going on.

    At some point before you know it, your precious mom will be gone. The demands on you will go away. Try to keep that in mind. You will have regrets when she is gone no matter how perfectly you care for her. Everyone does. I hope your regrets are minor, such as “I wish I’d let mom have more ice cream at that family gathering,” and not “I wish I hadn’t lost my temper and scared my mom.” With the help of my suggestions, try to conduct yourself in a way that will make you proud. Your mom loves you and appreciates what you are doing for her on a deeper level. She will also for give you. Remember that.

    A lot of people become upset by the personality changes that the person with dementia undergoes, especially the child-like behavior. Treat your mom like a small child who needs your protection but giver her the respect she deserves because she is still your mom underneath all the changes. You are an incredible person. I hope my reply has been helpful to you. Please let me know how you’re doing and keep up the good fight, Cleo.

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  2. I am careing for my mother who has Alzheimer’s and dementia . I get so stressed and mad at the disease and I yell and scream . I often wander why , Why my mom ?
    I love her so much and I really hate seeing her lime this . I try to be the best caregiver I can but sometimes it’s so hard . I feel so bad when my anger comes out at my mom , I know she didn’t nor would ever choose this for me or herself . She’s always been independent and done the cool ng the cleaning and taken care of her family . I really wished I could take it away and make her all better ! I miss my mom the way she was before this horrible disease took over . I sometimes feel like I need help emotionally and spiritually and physically . If you have any suggestions please share them with me .
    Thank you

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