Caregiver Survival Guide 2



Carer's Survival Guide 2

>> Caregivers Burnout

       << survival guide part 1

In addition to your own generosity of spirit, learn to be open to receiving. For many people, it is more difficult to receive than to give. Whether owing to pride, shyness, embarrassment or sheer inability, many people have a hard time asking for help.  

It can be hard to ask for and accept outside help, particularly if you have never done so before. There is nothing shameful about seeking help from friends, your family or from a professional trained one, either as an individual or as a family. Health professionals themselves often seek support to help them face feelings of frustration and uncertainty in their lives and work.

When relationships are strained, caregiving can be especially challenging.


1. Ask others for help

You can and should ask other family members to share in caregiving. A family conference can help sort out everyone’s tasks and schedules. Friends and neighbors also may be willing to provide transportation, respite care, and help with shopping, household chores or repairs. 

2. Take Care of You - Be Compassionate With Yourself

Here is the most important advice: Take care of your own physical, emotional, and spiritual needs. Although we may be focused completely on our loved one's suffering, we need to be strong in order to be there. Taking care of yourself is not a luxury; it’s a necessity. If your health is compromised, it’s hard for you to be an effective caregiver. Your life is hard enough. For your own sake, and your loved one’s, take good care.

Withdraw yourself mentally from the crisis for short periods, and do not feel guilty. Maintain your nutrition, exercise, and rest. Whether meditation, exercise, or prayer are your personal modes of finding strength, don't abandon them now. Remember the universal statements regarding the use of oxygen masks on airplanes: "When flying with children, always place YOUR mask on first." You have to be strong and conscious in order to help others. As a caregiver, you must make time to care for yourself in order to provide good care for your loved one. It is important to recognize your own needs as a caregiver and to ask for help when needed.

3. Acknowledge Your Emotional Distress

Vent your tears, fears, frustrations and other such emotions. Confide in a trusted friend or support group. Consider writing a diary.

Bottling up your frustration and emotions can make you tired, angry, intolerant, unhappy and physically unwell. It also makes your breaking down in front of the patient, a distinct possibility. This is something you will want to avoid. It would add to the patient's guilt and misery and can undo all your efforts, at maintaining a positive attitude.

Share your problem with anyone who will listen. There is a lot of benefit from talking with other parents or someone who is familiar with illness. Fear is the most basic of emotions. When a parent or loved one is ill or incapacitated, it can make you feel like a child again. The shocking awareness, in childhood, that we are separate beings whose parents cannot protect us is a feeling that never truly dissipates. The fear of being alone rushes back precipitously when we are reminded of our loved one’s mortality. It is important to know that you will have moments of deep sadness and hopelessness when you see your loved one suffering, and that is a natural reaction.


4. Hope or Hopelessness

"There are times when you don't know how to help. You can't take away the pain. You can't take away the frustration. All you can do is be there, and it's a very helpless feeling."

You may feel hope or hopelessness to different degrees throughout the cancer treatment. Your hopes and dreams change with time, and shift back and forth. Although remission may no longer be possible for your loved one, it's okay to hope for other things. You can hope that you and your loved one experience comfort, peace, acceptance, and even joy in the days ahead. As a caregiver, these feelings of hope may help you get through the next 5 minutes or the next 5 days.

5. Sadness or Worry

You may feel sad or worried as you watch your loved one struggle with cancer. You may be concerned with how he is coping with side effects or coping with fear. Or you may be worried about bills, your family, or ending up alone. It's okay to cry or express your feelings when you are alone or with a trusted friend. You don't have to be upbeat all the time or pretend to be cheerful. Give yourself time to cope with the changes you and your loved one may be going through.

6. Anxiety or Depression

Anxiety means you have extra worry, you can't relax, you feel tense, or you have panic attacks. Many people worry about how to pay bills, how things will affect the family, and, of course, how their loved one is coping. Depression is a persistent sadness that lasts more than two weeks. If any of these symptoms start affecting your ability to function normally, talk with your health care provider. Don't think that you need to tough it out without any help. It's likely that your symptoms can be eased. 

7. Hurt Feelings

You may be feeling more sensitive right now. Being tired and stressed can put you on edge more than usual. And because of this, your feelings may get hurt more easily. This could be because you feel like you're not being helped enough. Or it could be that you feel people don't understand how much you're going through. However, one common cause of hurt feelings is when the person you're caring for directs anger at you. She may feel stressed, tired, or scared, and in turn, take her anger out on you. Or sometimes medicine causes people to have more anger than they normally would. Try not to take this personally. Ask the doctor if anger is a side effect of medicine. You may also find it helpful to share your feelings with your loved one. Sometimes patients don't realize the effect that their anger has on others. But most of all, remember that we often show our feelings, good or bad, to the people we love the most.


8. Anger - Confront Your Anger or Frustration

"It's emotionally exhausting, and I never know what to expect. One minute, things are looking up, and a couple of hours later, something happens and I don't have the answers."

"It's okay for a neighbor to ask how I'm doing when they want the answer to be, 'I'm fine.' But when I'm really not fine, all I need is to talk to someone who can understand, or just hear me out. You don't have to have an answer, just listen to me."

You may find that you're getting more and more angry and frustrated as the person you're caring for gets sicker. It may help to try to process these feelings as they happen, rather than hold them in. Ask yourself what's really causing the anger. Are you tired? Frustrated with medical care? Does your loved one seem demanding? If you can, try to let some time pass before bringing up your feelings. It may also help you to express your anger through exercise, art, or even hitting the bed with a pillow.

Many things are going on right now that can make you angry. You may be angry with yourself, your family, God, or even the person you're caring for. At first, anger can help by moving you to take action. You may decide to learn more about different treatment options or get more medical opinions. But anger doesn't help if you hold it in too long or take it out on others.

It may help to pinpoint why you are angry. This isn't always easy. Sometimes anger comes from feelings that are hard to show, such as fear, panic, or worry. Or it may come from resentment. If these feelings remain, talk with a counselor or other mental health professional.

9. Loneliness

You can still feel alone in your role as a caregiver, even if you have lots of people around you. It's easy to feel like no one understands what you're going through. You also may feel lonely because you have less time to see people and do the things you're used to doing. Whatever your situation, you aren't alone. Other caregivers know how you feel and share your feelings. 

10. Denial

You may have trouble accepting that your friend or family member may not recover. You may think that if she keeps getting treatment, something may finally work, or a new discovery will be made. There's nothing wrong with this. But try to listen to your loved one and the doctor to really hear what they're saying. Your way of coping may make the patient feel that you don't really understand what's happening. Again, it's okay to deal with things at your own pace. But be aware of the effect this may have on others.


         11. Share Your Worries with Others

Don’t try to deny your own pain and frustration.  And don't try to hold it in. It is important to find outlets to ventilate your own distress and tell the truth about what you are going through. Don’t be afraid of frightening off others. Those who care will be there for you.

12. Keep your loved one involved as much as possible in decision-making:

Dressing, and other things, as long as he is able. Even if he balks. That will help him remain as independent as possible, helping his morale and so much more.

13. Do not assume more responsibility or control than necessary.

You cannot do all things, be all things, and solve all problems for your loved one - and if you set such unrealistic expectations for yourself, you are just setting yourself up for failure and big time anxiety!

14. Ask others to help you! → asking for support

You can and should ask other family members to share in caregiving. Older children living at home may be able to assist you and/or your loved one. Such responsibility can help young people become more empathic, responsible, and self-confident and give you needed support. A family conference can help sort out everyone’s tasks and schedules. Friends and neighbors also may be willing to provide transportation, respite care, and help with shopping, household chores or repairs.


15. Reach out for help!

Caregiving is not a one-person job. Asking for help is a sign of strength, not weakness. Help comes in various forms, and can range anywhere from others pitching in, to having more information about your loved one’s condition, to sympathetic understanding from your boss.

Network with other caregivers through support groups or online discussion groups to get ideas and share feelings.

16. Eat properly, whether you feel like it or not.

Your body needs it as fuel if you are going to tackle the physical, emotional, and psychological challenges of caregiving. Do not use up all your financial resources, either, or neglect paid activity to pay your basic bills. You need to live, too.

17. Take care of yourself in every important aspect.

In addition to eating and sleeping, get exercise. You need it for physical stamina, health, and as an energy booster as well as a stress reliever. Treat yourself to something special, too. Get a haircut, buy something pretty, get your teeth cleaned, and don't overlook your physical health.


18. Make time for YOU with friends or family who nurture you or make you laugh.

Avoid isolation, as it may lead to depression. Invite a neighbor or friend to the hospital or join a club. DO NOT cut off ties to non-cancer related activities because "you don't have time."Laughter is good medicine.  And all your friends don't have to be local. You can find some great ones online - people who encourage you with their own stories, and people who understand and value your story. Don't underestimate how much it helps to talk to someone who's "been there!"

19. Find someone you trust to talk to about your deepest thoughts and feelings,

even the ugly, angry, or depressed ones you try to hide from everyone else. Or especially those. Get them out on the table. It's so freeing not to have them closed up and festering inside! Just getting them out will be like a breath of fresh air, and a lifting of much of the heavy burden those things cause. Just don't deny your feelings - all the negative emotions that caregiving can cause - or your anxiety will build.

20. Work

If you are a working caregiver, it is important to discuss your needs and different options with your employer. Telecommuting, flextime, job sharing or rearranging your schedule can help to minimize stress. Increasingly, companies are offering resource materials, counseling, and training programs to help caregivers.

21. Learn all you can about your loved one's condition,

Accept those things you cannot change, and have realistic expectations. It's especially hard with degenerative diseases, watching your loved one's body deteriorate or the cognitive functions of the elderly friends and family with Alzheimer's and Dementia.

22. Remember daily to reward yourself for the positive difference you make in your loved one's life

And the specific little things you did that day - and don't stress yourself over the things you simply did not get done, can not do, or can not change. Is the cup half full or half empty? Focus on the good things - the positives you did and experienced, and put those in the "rewards" cup. It's your attitude that determines your altitude!


23. Find quality back-up caregiver support to free you up for that dinner with a friend . . .

or rare trip to the mall or hairdresser or doctor for YOU, or so you can work and keep your own finances intact . . . and so you can spend important, nurturing time with your spouse, children, or someone else who builds YOU up . . . or for a needed weekend getaway.

Don't overlook other help, either, such as Comfort Keepers, respite care services, home health care services. And if your loved one is older but "mobile," try the stimulus of Adult Day Care.

To move mountains start carrying small stones


24. Deal with One Thing at a Time!

During times of actual crisis, don’t project or worry about the future.  Deal with the immediate only. Pick out the closest goal or target. Don’t begin to worry about what will  or  might occur down the road. Don’t dwell on how traumatic these events are for everyone in the family. This will only increase your anxiety and distress. Pick the next step and place one foot in front of the other; concentrate fully on that. Your worry about the future is a waste of your energy during times of crisis. Furthermore, your predictions may be entirely erroneous.

 25. Create a list...

of things that need to be done, such as grocery shopping, school runs, child-minding, laundry, errands, lawn care, housecleaning, or spending time with your loved one or friend, and put it on the refrigerator or near the front door. If someone says, “let me know if there is anything I can do to help” you can point to the list.

26. Face Your Deepest Fears and Pain

Most psychologists and spiritual leaders recognize the need to experience, rather than suppress, these feelings. The universality of death and transient nature of life are realities for us all. Knowing this from a spiritual perspective can help you dialogue and deal with the intense feelings of the heart. This is not easy - but it is necessary and ultimately healing.


27. See Crisis as an Opportunity for Healing

Many individuals have had fractured and painful relationships with their parents or loved ones. Seeing your loved ones as vulnerable and wounded may offer new opportunities for healing. Rather than repeating this cycle of generational pain/anger, this can be a transformative time for all concerned. Look for ways to put the past behind you and be present and loving.

28. Honor Your Loved One's Spiritual Journey

Honor what is going on with your loved one on a spiritual level. In addition to the physical emergency, there is a higher truth. The physical brain/body is constantly changing and ultimately deteriorating. Spiritual forces will ultimately determine the outcome of this life, as well as its ending. This is not something you can control, although you can provide comfort, support, and care.

29. Believe in yourself.

 Trust your instincts. Let your inner voice guide your decision making for your loved one and yourself. Believing in "You" is the first step toward building confidence, which is an essential tool in coping with being a caregiver.

30. Assume the Role of Caregiver

You are now the advocate. Make sure your loved one is getting the best medical care possible. Your job is not to "play doctor," but to find the most competent and caring physicians you can. Work with medical professionals you can trust to guide you and your loved one through these difficult times. As you find strength you never knew you had, make sure you save some for your own life. One of the hazards of caretaking is sacrificing yourself in the process.

 31. Experience the Power of Love

Soak in the love. Let the love and prayers of others uplift you. On your journey, remember that love heals. Your presence in your loved one’s life is a healing presence. Let others replenish you with their love and compassion along the way.

32. Let Caretaking Transform You

When a loved one is in a crisis, we change our priorities and notions of what is important in life. The pursuit of material wealth, professional recognition, and ego gratification are easily shed. Unfortunately, after a while, time and again we forget these healing lessons and return to our prior state of consciousness. Make an effort to allow the life lessons of caretaking to help you on the road to self-improvement.

When it comes to decisions regarding end of life or continued treatment, be sure to make the judgment based on the best interest of your loved one. Too often there are unnecessary tests, procedures, and surgeries performed on individuals    who are in the process of actively dying and who have no realistic hope for recovery. Rather than allow relatives to         die peacefully, some people insist that "everything be done." This causes unnecessary pain and suffering. Often the motivation is guilt or the inability to let go. In such situations this can be a selfish, rather than a loving act. Know in your heart when it is time to let go.

34. It's not working, you say?

If after these things you are still jumping out of your skin, crying at the drop of a pin, or feeling so wiped out it takes monumental effort just to move or respond . . . or any number of the caregiver burnout symptoms above. 


35. Don't wait!

Seek professional help from a therapist, faith-based counselor, doctor, clergy, or other experienced advisor.

The professional can help you sort through your emotions and situations. Help you get a grip, find the support you need, and make the necessary changes, so that you can think clearly, gain strength and confidence, and survive the caregiver challenges ahead...

So that you can not only be an over-comer, but be open to the many special moments of closeness, sharing, bonding with your love one.

 Caregivers Burnout



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