Watching the care receiver decline, not being able to do things that used to be easy and natural is sad. We also grieve for the care receiver, the person who used to be and our relationship with that person. We often need to grieve the loss we are experiencing on a daily basis or it will come out as something else.
One caregiver would write on a piece of paper the things her husband could no longer do, then go to the ocean and throw the pieces in the water as a way of letting go. We tend to want to avoid the sadness that comes with grief, but allowing ourselves to feel it promotes healing.
Guilt is the feeling we have when we do something wrong. Guilt in caring for care receivers comes in many forms. There is guilt over not having done enough to have prevented them from getting sick in the first place. There is guilt over feeling like you want this to end. Or guilt over having been impatient with your care receiver too much. There is guilt over not loving or even liking the care receiver at times. There is guilt over not doing enough for the care receiver or not doing a good enough job as a caregiver. And if the care receiver falls or something else happens, there is guilt about it being your fault that it happened.
And sometimes caregivers feel guilty about thinking of their own needs and see themselves as selfish, especially if they should do something like go to a movie or out to lunch with a friend. How difficult is it to get your care receiver up in the morning? And you have other things to accomplish that day. All this and the care receiver is acting unhelpful and moving slowly. It is understandable that you would get impatient at times.
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Do you sometimes feel jealous of your friends who are able to go out and do things that you can no longer do, because of your caregiving responsibilities? Are you jealous of your siblings who are not doing their share to help? Do you feel jealous of a friend whose parent died quickly and easily while you take care of a parent who has had dementia for many years? Are we jealous of someone who got a big inheritance since we are struggling to pay bills and to be a good caregiver?
Most of us do not want to be dependent on someone else.
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Learning to accept help is hard. So, the care receiver is often pushing away our attempts to be helpful and caring. If someone has dementia, this problem is often much worse. And we get our feelings hurt because the care receiver does not thank us or even see how much we are giving up in order to care for them.
The longer you are a caregiver, the more isolated you become. With no one to talk to day in and day out except the care receiver, it is easy to lose a sense of yourself. Learn about resources from your local Area Agency on Aging about respite programs or day care programs that will allow you to get a much-needed and well-deserved break.
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No one can do this job alone. Look at your wider circle of support—faith community, neighbors, friends, distant relatives, etc. Caregivers experience many losses, some of which have already been mentioned: loss of control, loss of independence, loss of income, loss of your best friend, loss of the future, loss of a sense of yourself.
Loss leads to grief and depression. For each of us, the losses will be different.
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When you know what you are feeling, you will be able to look at the loss and think about what might work for you to help you deal with it. Little things easily become big things when we feel unappreciated and unacknowledged. And feeling like you have to do it all, and do it all by yourself, is a guaranteed way to feel resentment. Coping: Family situations and dynamics can be a real challenge. Having help from family may make your situation easier, but sometimes family tensions make it even harder to get help.
The more help and support you accept, the easier it will be to let go of feeling burdened and resentful of those who are not doing their share. If family tensions are getting in the way, it could also help you to refer to the FCA fact sheet Holding a Family Meeting. It is easy to forget about the good things that have happened or are happening when we only focus on the negative.
As a caregiver, how often do you get the full eight hours of sleep they always say you need?
Sleep is often postponed while you grab a few minutes of alone time after the care receiver goes to bed. Sleep is often disturbed because the care receiver gets up at night and needs help going to the bathroom or being re-directed back to bed. Coping: Sleep has to be put on the priority list.
Lack of sleep leads to obesity, illness, crankiness, impatience, inefficiency in accomplishing tasks, and a state of mental fogginess among other issues. If you are having trouble falling asleep or staying asleep not related to direct caregiving, talk to your physician. There are ways to help both of you to get the rest you need.
As a caregiver, you do amazing work caring for others in need. But as a caregiver, you also need to think about yourself. Just pushing through each day will eventually wear you out and cause you to burn out. Emotional issues can weigh you down and impact not only your ability to cope and provide care, but they can also harm your health and well-being. It is important to learn to ask for help and prioritize getting breaks from caregiving, so that you can be the caregiver you want to be. Family Caregiver Alliance FCA seeks to improve the quality of life for caregivers through education, services, research, and advocacy.
Through its National Center on Caregiving, FCA offers information on current social, public policy, and caregiving issues and provides assistance in the development of public and private programs for caregivers. Eldercare Locator eldercare. National Association of Area Agencies on Aging www. Lotsa Helping Hands www. The Caregiver Helpbook www. All Rights Reserved. Learn more. Skip to main content. Search form Search. You are here Home. To cope with this fear, you may also want to:.
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Sheri, former caregiver of friend with multiple myeloma, discusses the many roles caregivers play. Elaine R. As hard is that may be, being upfront makes it easier in the end. Barry, a caregiver, discusses how to communicate with health professionals and the importance of knowledge.
Sheri, former caregiver of friend with multiple myeloma, discusses the need to take and keep good notes as a caregiver during doctor visits. Barry, a caregiver, describes the community that he has found through his cancer journey. Children understand the world through their parents.
When a parent is sick or stressed, children of all ages can sense this change, even if they do not know why it is happening. Remember to openly express your love for them—especially while your family is trying to manage the stress the cancer may be causing. Many people have a wide social network outside the family, such as coworkers, teachers of school-aged children, friends and neighbors.
Some of these relationships will be closer than others, and you may want to tell some people about the cancer diagnosis but not others. If you feel the choice conflicts with your own, you should try to discuss this. If you do tell friends and coworkers, you will likely find that some relationships grow stronger while others become weaker—as is often the case during stressful times.
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