You are the primary caregiver and you are having a bad day. Nothing seems to be going right. There have been other bad days and you know there will be more on the way.
How do you cope with this situation when there seems to be no end in sight?
1. Take a Time Out
The first thing you need to do is to stop and take stock of the situation. Sit down, lie in the tub, go out in the yard, take a walk . . . do whatever feels the most comfortable, and take a good hard look at what is happening. The reality is that you not a superhuman. You ARE a loving, caring human being with many strengths, as well as limitations. It is time for you to take a time out. To continue pushing is dangerous, not just for yourself but for everyone around you. It is time for you to step back. When you feel the beginnings of desperation, find a way to get some time to yourself. It does not have to be long, but you need to stop before you actually reach the point of desperation.
2. Accept Yourself
Secondly, you need to accept yourself. No one is perfect. All humans have flaws, weaknesses, and limitations, as well as strengths and good qualities. All humans have many different emotions. Although these emotions can often be controlled to some degree, controlling an emotion and not having it in the first place are quite different. For example, there is nothing wrong with experiencing anger, frustration, jealousy, sadness or any other "negative emotion." Experiencing such emotions is a natural part of being human. However, the real problem comes when these emotions are pushed down deep inside or if a person feels guilty about having them in the first place. You need to accept that you are human and that you will experience these emotions sometimes. If you do that then you can accept the flaws in other people more easily, as well.
3. Write it Down
Next, take a few minutes to write down the feelings you’ve experienced in the last 48 hours. Name every one of them, the "good" and the "bad." Now make complete sentences about each feeling.
I am furious at ______ because _____.
I am sad because ______.
I feel good because _____.
This is a time when you can be completely honest with yourself because, when you’re finished writing all this, you can just destroy it. The point of this exercise is for you to gain a clearer understanding of what and why you are feeling the way you are feeling.
As you write, remember that feelings are just feelings. They are not always logical. In order to deal with them, you must first find out what those feelings are and how they are affecting you. Writing them down on paper can help you to do that. Writing can also help you to discover what is causing the emotion(s).
You need to be aware of your feelings and their source. Once you understand the source of your emotion, the trick of expressing and releasing it is to do it in a constructive, or at least not harmful, manner. But how?
4. Coping with your Negative Emotions
- Anger
On a "bad" day, you may feel anger at the situation, anger at your family for not being more supportive, and anger at yourself for not handling the situation the way that you think that you should. Anger may come from frustration or from loneliness.
It is important to understand that anger is a natural part of the situation and a natural part of being human. Then you need to find a way to deal with it. This may mean punching a pillow or perhaps burning off the energy by planting a garden. Finding a constructive way of getting out your anger has the benefit of replacing a negative emotion with something positive.
You might have thoughts about striking out at your family or your loved one for whom you are caring. Having that urge is not something to feel guilty about. The desire to strike out is normal -- but it is extremely important to recognize it and stop before you actually act on it! Recognize that the urge is a warning that the emotion is getting out of control. You may need to seek professional help from a psychologist, psychiatrist, counselor, clergy. Joining a caregiver support group might be beneficial in coping with this emotion. Discussing your feelings will help you to gain some perspective and come up with a plan to cope effectively.
- Jealousy
Very often, the underlying cause of anger is jealousy. Your family and friends were very supportive in the beginning, but now that you are settling into a routine, they may have gotten on with their own lives. You may feel jealous of everyone else’s freedom and the attention that your loved one is receiving.It may seem that everyone else is living the "good life" while you are struggling along.
It may help to ask for help from family and/or friends at this time. This is also the time to take some time for yourself. One of the main causes of jealousy is having no time for yourself and nothing that brings you joy in your own life.
- Depression
Your lifestyle changes dramatically when you are a caregiver. You have given up many things to do this. Taking time for yourself is necessary. If depression lingers, your effectiveness as a caregiver will diminish, your relationship with your loved one will deteriorate, and your life will become increasingly difficult. Again, seeking the help of a professional counselor would be appropriate at this time.
- Frustration
There is an endless variety of situations that can frustrate a caregiver. Joining a caregiver support group can offer you an opportunity to safely vent your anger and frustration without being judged. In addition, the other members of the support group may offer suggestions and techniques to help solve some of the problems you are facing.
5. Quality Time
It’s important to remember that you are not in this alone. Others are involved. Beyond this, you have a life of your own and relationships with others. The important thing is the quality of time you spend with others. Ten minutes laughing with your spouse or child is far more therapeutic than an hour of arguing. More than this, just as you need time to rest and recover, you need time with others. Sometimes the best “time out” is time spent with other members of the family. This gives you, and them, a sense of unity. Withdrawal, on the other hand, can increase your feelings of isolation and increase the risk of depression.
6. Focusing on the Positive
It is possible to think your way to new feelings. Here are 3 steps for doing this. You can use your journal to help with this.
- Ask yourself how or what you are feeling -- mad, sad, frustrated, etc.
- Who or what is truly responsible for this feeling?
- What are you telling yourself? "Listen" to what you are saying to yourself, and write down those self-statements.
A tendency to make statements to oneself that label a situation as “terrible” or “horrible” will certainly cause feelings of sadness, frustration, and/or anger. Ask yourself if your self-statements are really accurate. In addition, decide what you can do now about the current situation, as well as what you can do the next time it comes up. In this way, you are trying to form a plan for a solution, or to recognize that the situation is one that you have no control over and just has to be tolerated. If it’s the latter, then recognizing that there’s nothing to be done is the first step in accepting the situation as it is.
7. Make a Personal Declaration
Think about the following self-statements and decide to make them a part of your daily life:
- Taking care of myself is necessary if I am to give care to others.
- I know my own limitations and strengths. I seek help when I need it
- I have the right to feel what I feel and to express those feelings in a calm manner.
- I maintain the right to my own life outside of care giving.
- I take pride in my accomplishments and in the courage it takes to perform these tasks.
- I realize that I cannot control the happiness of another person. I cannot fulfill all of his or her needs. No one person can.
- I have the right of choice, to decide what I will or will not do. This includes the right not to be manipulated by anger, fear, or guilt of my loved one.
8. Learn to Relax
Here are some tips for relaxation:
- Keep a journal.
- Put on a favorite piece of music or listen to a CD or tape of nature sounds.
- Meditate. (Tip: Focus on your breathing. As you inhale, silently say to yourself, “I breathe in” and as you exhale, silently say to yourself, “I feel peaceful.” Continue for 10 minutes.)
- Think back to when you were a child. What were you interested in? Get books v on the subject from the library or bookstore and study the subject.
- Start a new hobby (such as, painting, drawing, playing an instrument, listening to music, putting together puzzles, etc.).
- Exercise. (A walk in nature for a half hour can dramatically shift your perspective.)
- Read a good book.
- Indulge in any activity you can do by yourself that calms your spirit.
- Find a volunteer to spend several hours with your loved one or hire someone.
- Take a vacation.
- Utilize respite services.
The Importance of Being Proactive
Being proactive means taking action BEFORE it becomes a necessity. Here are some tips to possibly prevent some of those “bad” days before they happen. Llardo and Rothman (1999) refer to these tips as the “Caregiver’s STOP Sign.”
S = Seek out opportunities for support
For example, a caregivers group can provide both practical guidance and emotional support.
T = Take time for the things you enjoy
Although you may not have time for an elaborate project, you can find the time to do something you like. For example, if you can’t go to a concert, you can listen to a CD of your favorite music. If you can’t go to the movies, you can rent a video. Avoid saying, "I can’t do anything!" just because you no longer can do it the way that you used to.
O = Opt for help whenever you can
Learn to say yes to help that is offered to you.
P = Prioritize your needs
Since you can’t do everything you’d like to do, you need to choose what’s most important to you. If exercise means more to you than meeting a friend for coffee, then forget the coffee and go exercise.
References
Llardo, J. & Rothman, C. R. (1999). I’ll Take Care of You: A Practical Guide for Family Caregivers. New Harbinger Publications: Oakland, CA.
Williams, G. B. & Kay, P. (1995). The Caregiver’s Manual: A Guide to Helping the Elderly and Infirm. Carol Publishing Group: New York, NY.
From CORE Health Care. Used with permission.
Comments (12)
Please remember, we are not able to give medical or legal advice. If you have medical concerns, please consult your doctor. All posted comments are the views and opinions of the poster only.
Anonymous replied on Permalink
Hi I was my hubby's caregiver for 8vyears now he's in a nursing home and I'm lonely have to start a new life without him I cry all the time whats wrong with me ty
Anonymous replied on Permalink
I am one of several that is caring for an ill aging mother. We were told that our mom is at the end of life. It seems so simple to say it, but it tears at my heart to think my mom will soon be gone. It has been an emotional journey from day one, from the sadness of knowing our mom has limited time left, from fear of what to do when that day comes when she cannot wake up, from anxiety of having to go on with life without her. It is a difficult process, I just want to wake up and find my mom young and vibrant again, but I know that is impossible. I have my private crying spells alone when I am not with her, and when I am with her I try to so very hard to put up a front that I am in control of my emotions. Trying everyday to do my part in taking care of her and being there. It is such a hard journey.
Anonymous replied on Permalink
If it is affordable for the family, it is better to hire a paid caregiver. Then the family caregivers can concentrate on other family chores along with taking care of the patients.
Anonymous replied on Permalink
I am tired. There is no help from family, in fact, my sisters are horrific. While I know that this time will pass, and after my mother has passed, I will have no regrets, it is difficult, so very difficult.
Eileen Corrigan... replied on Permalink
Since my husband returned from rehab( servere MVA and multiple injuries 5 month stay) the visiting healthcare team is here and they are wonderful, my siblings and friends have reached out often with calls, cards, errands, foods offers as best they are able in this time of covid. My step children have continued their lives as if nothing happened. When I gave them a copy of his Power of Attorney, in the event something would happen to me(I am 70) there was a genuine fear and annoyance . I have shared my disappointment and frustration at their indifference but he is so desperate for any contact he can not recognize what I am trying to communicate. Both will end their infrequent phone calls with "love you" ... I am reminded of a line from a My Fair Lady song"don't speak of love shinning above if your in love show me" Actions do speak louder than a flowery-sweet hallmark card. and they have done nothing. During the past 5 months since he has been home he has resisted selling items we shall never use again: RV, Tow dolly, multiple tools,, model trains, I have to push for basic home repairs he has sabbatage all of my attempts to hire people re selling 33 1/3 records (had a offer), caulking a sink ( told them no) ignores my pleas. 2 Physical Therapist have suggested he sell his truck and purchase a smaller SUV or mini-van told NO . So here we sit in a house with his true wife ... the TV I feel like an indentured servant or a serf tied to the property. It is dreadful. Is there a future for me?
Lucy replied on Permalink
Your situation is similar to mine. I'm alone with my husband that has Alzheimer's and seizures and he watches tv all day, except when he's up destroying or messing or spilling or going to the bathroom in the middle of the room. I get no help from his family and I just feel like crying all the time. I used to be patient and now its just so very hard to be all the time. I wish I had someone to vent to.
Anonymous replied on Permalink
I learnt to forgive the other and forgive myself on a daily basis which help to reduce the stress of family caregiving. I think even professional caregivers need to learn such a technique in addition to writing down feelings. It is so much quicker and then we can move on.
Dr. Ethelle Lord
Pioneer in Alzheimer's Coaching
Anonymous replied on Permalink
I agree with the comment that a long-term caregiver with responsibilities for both a young family and disabled person is a double whammy. They need a lot more consistency and help than a friend or other family can offer, especially if family lives far away. This is increasing common for families caring for elder parents as they age, who also have children or teens at home, especially if the responsible caregiver also has to work for a living I've been there, done that! Fortunately, there are growing numbers of support resources, private as well as non-profit, for elder care at home: private daycare, transportation, and companion/sitter services. Some companion services include home chores (cleaning, grocery shopping and meals, light housework, yard-work, etc). For-profit non-medical caregiver help is a growing industry. My franchise business with Seniors Helping Seniors matches seniors who want to help on a consistent schedule but need income, with seniors/caregivers who need consistent long-term support. It is a win-win situation, because the senior needing income and the senior needing help both benefit. If you do an online search for in-home elder care, be sure to look for the lower cost non-medical services in your area.
Anonymous replied on Permalink
Anonymous replied on Permalink
Anonymous replied on Permalink
Anonymous replied on Permalink
There are not people willing to help, her sister is MIA, didn't visit after heart attack, that 20 mins of no oxygen caused brain damage. Her daughter lives 5 hours away and is too wrapped up in herself and her problems. I'm the daughter's friend and caregiver. I have 35 hours authorized assistance by an aide. But I go to work, getting up at 4am and have lost 200$ a week bcuz I need to be home, she cannot be left alone.
She is supposed to go to nursing home. But dealing w complications bcuz it's a move from one state to another, daughter not getting full POA. Has a Durable POA. Into related to this person, sometimes I go without contact w daughter for 2 wks. She doesnt get it. Stayed 2 nights after she crashed and was on ventilator. She went to rehab, but refused PT and OT. Also refused in home PT and OT. She had mental disorders that now have no impulse control over. OCD, Narcissism, Controlling and passive aggressive behavior
It is a NIGHTMARE. Repetition, control, wanting constant attention, asks for ass wiped 2 mins after changes, changes clean diapers, asked for a change every 5 mins because she is going to go, but can take hours bfor she does. Constantly asking for food. Will tell "help" when nothing is wrong but just wants to ask a question that's been asked 60xs before in same day. She has no friends, isolated herself, and was slowly drinking herself to death. Obviously, not drinking and all the mental issues more prevalent now that sober. Refuses to keep schedule, has no hobbies to redirect too.
My health has declined, my BP is now 153/ 80...norm 132/65. I now have to take high cholesterol meds. I suffer from anxiety.
So no, not always someone to help. And I wouldn't ask bcuz shes so awful.
I have put up posters w schedule and top 3 rules. I have a whiteboard to refer to