Self Help:The Sudden Caregiver
If the person you are caring for is a veteran, contact the Veterans Administration. Care consultants at local organizations, such as the Alzheimer's Association, may also be able to provide information on palliative care programs. Good palliative care programs have two things in common, Hudak says. They use inter-disciplinary teams and each team works with the patient and family to create a personalized care plan. It helps people look at options and it provides step-by-step help for caregivers in making the decisions they need to make for the best quality of life for their family member," Helene Morgan, MSW, a member of the pediatric palliative care team at Children's Hospital in Los Angeles, tells WebMD.
Whether you are a spouse, adult child, or close friend, choosing to help provide palliative care -- to become a member of the palliative care team -- means you are making "a role-changing decision," Marcantonio says. Because of the added responsibilities and commitment that come with being a caregiver, you will constantly ask yourself: Is palliative care the right thing for my loved one and for me? To answer that question, do frequent reality checks. George Roby is caring for his wife in their Chagrin Falls, Ohio, home. She has Alzheimer's disease.
I always feel better after I've gone there.
- Caring for the Caregiver:;
- Emotional Side of Caregiving.
- The Palliative Caregiver!
It's also important to take a break, says Marita Schifalacqua, who took care of her mother until she died of Alzheimer's in Soon after Jackson's husband passed away her chest started hurting so dreadfully she feared it was heart trouble. And I can feel that I'm getting better.
The option of palliative care
The option of palliative care Palliative care is person-centered care with a goal of maximizing a patient's quality of life. Continued Keeping Caregiver Stress at Bay Whether you are a spouse, adult child, or close friend, choosing to help provide palliative care -- to become a member of the palliative care team -- means you are making "a role-changing decision," Marcantonio says. That new role can bring stress and strain, and unexpected rewards. Handling added responsibilities and unforeseen challenges.
Information is the key to coping successfully with both. According to the National Alliance for Caregiving, the best sources of information are your palliative care team; the Internet; support groups, including online support groups; disease-specific organizations; government agencies and programs the VA, Medicare , Medicaid ; social service organizations; and books and magazines. Juggling Work and Caregving. And take advantage of the Family Medical Leave Act: It's there to enable you to care for a loved one.
This is especially true if there are children still at home or you are dealing with siblings. Where possible, and appropriate, involve family in caregiving because that can often lessen friction, says Carol Whitlatch, PhD, who has been doing research on caregiving for more than 15 years at Benjamin Rose Institute on Aging in Cleveland, Ohio. But she adds, "If you can't get everyone on the same page, accept that fact and move on. To obtain help in managing finances and insurance , see the palliative care team's social worker.
It is easy for us to feel responsible for the behavior of someone else and feel like it is our fault when these things happen. Others have friends, family members, or an attendant accompany them when they go out to offer assistance, when needed. What if something happens? Will I be able to cope? Will I feel guilty? Am I responsible for things that go wrong?
- The Palliative Caregiver: Caregiver Support, Tips, Resources!
- Understanding the Importance of Caregiver Well-being.
- Sparrow Swift Is Born (International Intrigue Book 1);
- Emotional Side of Caregiving | Family Caregiver Alliance.
It is important to have contingency plans. So, it might make sense to have a back up caregiver in mind in case something should happen to you, or to think about how you would handle predictable medical emergencies based on what disabilities your care receiver has. When you get scared, it is often helpful to talk to someone who knows your situation and can give you perspective and calm your fears.
Frustration is part of many other feelings, such as ambivalence, anger, and impatience. And if you are tired, you are more likely to get frustrated. Frustration may lead to stress eating, substance abuse, and a higher likelihood of losing your temper. Acknowledge how frustrating caregiving can be. Join a support group to learn the tricks other caregivers have learned to make coping easier. Get breaks from caregiving so you have time for YOU and a chance to refresh your energy.
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. Sometimes creating a ritual can be helpful.
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.
How to Help an Aging Parent
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. You need permission to forgive yourself. 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.
Leave a lot of time to accomplish tasks. Leave a LOT of time. Create a list of the things you are in control of and are not. Understand what you can and cannot control. 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. 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. Sometimes we have to give ourselves our own pat on the back. 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. Find ways to get out of the house and involved in something other than caregiving.
Rebuilding Your Life After Caregiving
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. 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 leads to grief and depression. Identifying your losses can help you to cope with them. For each of us, the losses will be different. 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. Family situations and dynamics can be a real challenge.
Rebuilding Your Life After Caregiving
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.
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.