Guilt, Worry and Anger

These three negative emotions cause caregivers--and your loved ones--a lot of pain and stress. In recent blogs, Mary, George's caregiver, has been learning how to deal with negative emotions. But these three, guilt, worry and anger still trip her up...a lot.

Guilt

Feeling guilt is how people try to control the past. Mary can't change that she was impatient with George, but she can at least, feel guilty it. Mary's brain accepts this as an immediate solution, but it doesn't accomplish anything and so this triggers more guilt. This adds stress, so that Mary will likely be even more impatient in the future. To deal with guilt,

• As with any other negative feeling, recognize your feelings of guilt and put them into words. And then LET THEM GO. Consider guilt a toxic feeling that you don't want hanging around.
• Look for the underlying feelings. Guilt is a "secondary feeling." That is, it is usually a response to other feelings like resentment or fear or feeling inadequate. Recognize these and put them into words too.
• Be compassionate with yourself. You are human and you have a very stressful job. Give yourself the same consideration you'd give someone else in your position.
• Align your future behavior with your values. While you can't change what has already happened, you can set yourself up to behave differently in the future. For instance, if you made a commitment to make weekly contact with your daughter but have been letting it slide, set up a special time and put it on your calendar.
• Ask for help. A lot of caregiver guilt comes from feeling you should be able to do it all. You can't. Caregiving is not a single person job. Call a friend or relative to come "visit" with your loved one while you take some "me time." Hire help for a few hours a week, or more if you need it. This is money well spent.
• Accept that taking care of yourself is "being a good caregiver." A loved one with a happy, healthy caregiver has less stress, and is happier and safer.

Worry

Mary used to worry a lot. That's how she tried to control a future that felt uncontrollable. Like guilt, worry is a temporary fix but adds stress because it doesn't actually accomplish anything. To deal with worry,

• As with guilt, put feelings of worry into words, and then let them go.
• Look the underlying feelings. Worry is another secondary feeling, often following feelings of fear and uncertainty. Turn these into words too.
• Think about what you can do. Make a list things you can actually do to change a situation. Thinks like asking for help or going to a support group. Then follow through.
• Once you've done what you can, let it go. If this is difficult, set a timer and allow yourself to worry of 5 minutes. Then move on.

Anger

This is a feeling that Mary often buries under guilt and worry. But it too, is a secondary feeling, which usually follows emotions like frustration, inadequacy and fear. When Mary can't do anything else about it, she can at least feel angry. As with the other feelings, feeling angry is a temporary fix that doesn't solve anything...and often makes matters worse. Unlike guilt and worry, both of which can be immobilizing, anger tends to move Mary into action, resulting in words or behaviors that she may regret later. Therefore, the first step for dealing with anger is to learn how to express it in constructive ways--or avoid expressing it.

• Get enough rest and take care of your health. This is a big one. If you are rested and healthy, you will be better able to respond to the frustration of a balky loved one or an unhelpful doctor more rationally. You may feel the anger, but you won't have to express it.
• Practice deep breathing. Taking three deep, cleansing breaths gives you some time to calm down and adds oxygen so that you can think clearly.
• Self-talk. Have some soothing chants that you can use in a hurry: "It's okay." "Let it go." "He isn't doing this on purpose." "It's the disease, not my loved one."
• Laugh. Step outside of the situation and see its absurdities and silliness.
• Later, you can do your homework of putting angry feelings into words and looking for underlying feelings. This may make it easier to deal with future anger.

For information about Lewy body disorders, read our books:
A Caregivers’ Guide to Lewy Body Dementia
Managing Cognitive Issues in Parkinson's and Lewy Body Dementia

Helen and James Whitworth are not doctors. As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a physician's advice.

Guilt, Stress, Depression and Burnout

Guilt. Caregivers will often feel guilty about not being perfect: about losing patience, about feeling resentful, about having to place their loved one in a residential facility, about wanting time for themselves, and on and on. Caregivers also say they feel guilty for “selfishly” taking time for themselves and other such behaviors. This guilt often leads to excessive stress and depression.

Stress appears when you feel overwhelmed by your physical needs, worries, responsibilities or expectations. Symptoms are depression, anxiety, irritability, lack of concentration and social withdrawal. In addition, you may feel anger at your situation or even at your loved one (usually accompanied by guilt!), exhaustion, sleeplessness (from nightly caregiver responsibilities or worries) and a variety of increased health problems. Denial about the disease is also common.

Depression is a major symptom of stress but it often follows loss as well. You feel so low that you lose interest in once pleasurable activities. Depression shares many symptoms with stress, such as feeling sad, anxious, worried, restless, hopeless, helpless, lonely, irritable, guilty, or empty. You may also experience insomnia, fatigue, loss of appetite or overeating, or have problems concentrating, remembering details or making decisions. Although suicide is also a risk, caregivers are less apt to consider this because of their feeling of responsibility towards their loved ones.

The above three often combine in a variety of ways to cause burnout. In fact they go together so much that it is hard to separate them. They are all common with caregivers in general and even more common those that care for someone with dementia. Dementia caregivers also tend to be older than other caregivers and that doesn’t help. We get tired faster and sicker more easily and the dastardly three sneaks in and drives us to burnout.

Burnout is when you feel emotionally and mentally exhausted. A once caring person has little energy left to provide adequate care or often, to even feel concerned anymore. Since stress and depression often lead to burnout, it is no surprise that symptoms include those in both conditions, as well as changes in appetite or weight or both, changes in sleep patterns, increased illness, and even feelings of wanting to hurt yourself or your loved one.

This is a job few people sign up for or train for. However, when it is your loved one, you step up and do your best. It usually involves loss—loss of your way of life, loss of your loved one’s health and even your own, loss of financial security, to name only a few. Family caregiving is usually a 24/7 job, with a growing list of physical, menial and emotional responsibilities that can stress and eventually overwhelm the most dedicated caregiver. When that happens, burnout is present.

Caring for your loved one’s caregiver is your primary job—it must come before caring for your loved one. This idea may sound radical, but it is based on the same principles as the airline steward’s message to don your oxygen mask before you try to help anyone else. Intellectually, most caregivers know this. But we all tend to forget, and to get so involved with caring for our loved one that we forget and let our own self-care go—or we call ourselves selfish when we do something for ourselves when we could be doing something for our loved one. Change “selfish” to self-caring, and let go of that guilt!

Future blogs will discuss ways to avoid burnout.

Read more about these three issues in our books:

A Caregiver's Guide to Lewy Body Dementia
Managing Cognitive Issues in Parkinson's and Other Lewy Body Disorders.

Caregiver Guilt

November is National Caregiver Month—the time for all of you caregivers to be specially recognized. You make it possible for your loved one to stay at home, or if they are in a care facility, to continue to get the best care possible and to feel loved—no small thing, that. Wives make up many of these caregivers. This is one wife’s story.

When my husband developed LBD, I felt I’d failed. I didn’t know what it was that I’d done or not done to keep Richard from succumbing to this awful disorder, but I must have been at fault. After all, it was my job as wife and mother to keep my family well. And when Richard became so ill that we had to move him to a nursing home, I felt I’d failed again. Once he was sick, it was my job, as a good wife, to take care of him. And now, I’d passed that job to someone else. I was physically unable to care for him at home, but still, it was my fault somehow. I’d failed again. I was so filled with guilt that I could hardly bear to look at Richard.

I forced myself to go to my support group and I admitted my awful guilt. I expected them to agree with me, to say they felt guilt too. And then we could wallow in it together. Some did. But one wise soul called me on my “pity pot.” She told me, “You are using guilt to try to control the past. And it doesn’t work. It just makes things worse. Look at what it’s done to you.”

I hated to admit it, but she was right. I was a wreck. I couldn’t sleep, I was living on junk food and I was hiding, even from my husband who, I knew, still needed me. I couldn’t stop Richard from getting LBD, or later, keep him at home, and so I tried to control fate with my guilt. And it wasn’t working. I didn’t feel in control at all.

“Let it go,” she said. “You are still Richard’s wife, and his caregiver. But guilt keeps you from doing either of those well—if at all. Let it go and get on with your life.”

I did. Every time I started feeling guilty, I made myself stop. That’s when I realized that my job was far from done. Richard needed me every bit as much as he had when he was home. I was his security, his emotional support. I was the staff’s resource for what worked and what didn’t work for him. Now that I don’t carry a huge load of guilt and I’m not burdened with all the physical care, I can be Richard’s wife again. What a blessing that is—for both of us.

Residential Placement--Without Guilt

Twin issues make it likely that eventually most LBD caregivers will need to consider placing their loved one in a residential facility. First, LBD is a progressive disease. No matter how dedicated you work to reduce stress and do other things to keep the symptoms mild and the acting-out minimal, it WILL get worse, with acting-out being the norm rather than not. Mobility may decrease as well. 

The second issue is your own health. Statistically, dementia caregivers are at high risk for illness and other health issues such as bad backs. LBD caregivers are at even higher risk. Either of these or, often, the two together can make the need for residential care a reality. Here are some areas of concern:

1.      Promises. The ideal way to prepare for this eventually is to start the planning early in your LBD journey while your loved one can still participate. But even if you don’t do that, be careful not to make promises you can’t keep. In our book, we talk about how Jim promised Annie he’d keep her at home. When he couldn’t keep his promise, Annie never forgave him. With AD, she might not have remembered the promise, or even Jim. But Annie had LBD, and she did remember. And so if you do make such promises, be sure to ALWAYS add, “as long as it is safe.”

2.       Stimuli. When looking for the ideal home, remember that your loved one is extremely sensitive to almost any kind of stimuli—too many people, bright lights, too much activity, etc.  Joy Walker, in her book, Three Years and Thirteen Dumpsters, tells of how she thought she’d chosen a wonderful place with caring staff for her father. But it was too big—too many people were coming and going, too much was happening and it overwhelmed her father and caused him to act out. When she moved him to a smaller home, with only a few residents, he did much better.

3.      Location. The closer the place is to your home, the more you will be able to have quality time with your loved one. You will be able to be there for shorter periods at all times of the day instead of just staying there for hours even if he is asleep and missing other times when he is awake. Also the more you will be able to take care of your own needs. For instance, you will be able to slip home for a couple of hours for a reviving nap, or take those hours to go out to lunch with friends.

4.      Drugs. Know the facility’s policy about drugs. You want to know that those drugs that are unsafe for your loved one will not be used and that the staff is trained in ways to use environment, behavior management and stress reduction to decrease symptoms before resorting to drugs.

5.      Interviews. Make visits, maybe even take your loved one there for a meal. Tour the facility. Interview staff. Our book includes things to look for and questions to ask. You can also find many other question lists on the internet at sites like Cargiver.org.

6.      Guilt. Many caregivers feel guilty when they can no longer care for their loved one at home. Don’t. Let the guilt go and move on. You are still the most important person in your loved one’s life. It’s just that your job description is changing. You may no longer provide physical care, but you are still your loved one’s emotional support and main source of stability. Besides, your guilt becomes stress for your loved one, like any other negative feeling they pick up and internalize.

By the way, expect to discover that after a few months, you will feel that you are an even better caregiver for your loved one. Now you have the energy to give quality time. Now, your health is better and you can focus on more than just making it through one more day. Now you can enjoy your loved one, and he you. Nancy put it this way, “When Del was at home, I was the caregiver and he was my patient. That’s all we had the energy for. Now, with Del in a facility, I got my marriage back. Someone else does the hard, time-consuming physical stuff and I can go back to being a wife, where being supportive and loving is my major focus.