10 Caregiver Confessions: Secrets We Aren’t Proud Of

Wouldn't it be nice to be perfect? Wouldn't it be nice to be a caregiver who had only loving thoughts every moment of the caregiving day? Maybe there are caregivers like that. If you are one of them, I truly congratulate you. Most of us who have been through years of caregiving will not fall into that category. I don't. How about you?

Here's a sampling of "caregiver confessions" that I've heard. You'll likely feel better just reading them.

Some Non-Angelic Caregiver Thoughts

1. I have no life of my own and I'm sick of it.
2. Mom acts like my boss even when it comes to what I eat.
3. How much longer can I keep this up? There is no light at the end of this tunnel.
4. Dad has no clue what I give up to do this. He thinks his care is routine.
5. Everybody wants a piece of me – there's nothing of myself left for me.
6. I can't even take a bath without someone needing me.
7. Nothing I do pleases them – they are never happy.
8. I just want to scream, run away, hide somewhere, or change my identity.
9. Maybe if I just take all of Mom's sleeping pills I won't have to wake up to this again.
10. She is suffering so much. She's been half dead for months. Why can't she just let go and die?

Obviously, some of these thought are more serious than others, however what is most important is the frequency of the thoughts and the duration. Let's look at them more closely.

Caregiver Confession #1: "I have no life of my own and I'm sick of it."
Caregivers often run from person to person, job to care receiver, home to nursing home, never really having time to do something that they want to do – just for themselves. If this describes your life, you are over-ready to get outside help. Whether that means some in-home care for respite so you can get away, or a sibling to step in so you don't have to spend every moment of every day as a caregiver, it's time to get a grip on your life. If you don't, you may burn out, get sick yourself, or even die before the care receiver. Who wins then? No one.

Caregiver Confession #2: "Mom acts like my boss even when it comes to what I eat."
Elders in need of constant care feel their own pain. They generally feel a lack of control over their lives, as bit by bit their abilities slip away. This can make some of them disagreeable and bossy. Generally, the answer to this is to learn to detach with love. If she picks on you for eating junk food, just let it go. You need to set some boundaries around what you will respond to. Some things are irritating but really not that important.

Often, if an elderly parent is bossy and critical, it's more about her than you. By detaching – not reacting, but just saying something like, "I'm sorry that's bothering you," and then moving on with what you are doing, you will not be giving in to her nagging. You'll be respectful of her sense of loss, but you won't be a doormat. She will likely get tired of trying to boss you around if you ignore her behavior rather than arguing with her.

Caregiver Confession #3: "How much longer can I keep this up? There is no light at the end of this tunnel."
If you have these thoughts on occasion, you may be just having a normal, down day. Caregiving can be tough and demanding. Caregivers often become exhausted. However, if you find yourself thinking like this often, you should seek medical help. You may have clinical depression, which can require therapy and/or medication (if a break from constant care isn't enough). Please see your doctor.

Caregiver Secrets: What Caregivers Are Really Thinking

Caregiver Confession #4: "Dad has no clue what I give up to do this. He thinks his care is routine."
This is a tricky one. As caregivers, we don't want to make the care receiver feel like he or she is a burden to you. The flip side of that, however, is that sometimes caregivers are so giving and cheerful all the time, that the care receiver completely loses sight of the fact that we give up a lot of our lives to be caregivers.

Also, some care receivers are not cognitively capable of even understanding the concept that the caregiver has other obligations. If you have a constant nagging thought that you are unappreciated, you may be in over your head. Getting some respite care may help. Once the care receiver understands that you need to have a break, he or she may be more appreciative. Either way, if you take a break, you will likely feel more refreshed and able to cope with the situation.

Caregiver Confession #5: "Everybody wants a piece of me – there's nothing of myself left for me."
Nearly every woman has had this feeling, whether it's a new mother with a baby demanding to be fed, changed and nurtured while the boss is sending her emails from work, or a caregiver of elders who still has children who are needy, or a mate who feels neglected
.
In most cases, we get through this, but if it's ongoing, you may need a third party to help you decide what you can give and what others must do. Say you are the primary caregiver for your dad and your mother-in-law. Your spouse is whiny because he/she feels neglected. It may be time to say, "If you help me by picking up some of this extra caregiving, we'll have more time together." This won't always work, but some spouses just don't "get" the teamwork concept unless they are directly approached. If this doesn't work, look for some paid help. You need some time to yourself.

Caregiver Confession #6: "I can't even take a bath without someone needing me."
This is often a literal problem. If you like to relax by taking a half-hour break in the evening to relax in the tub – maybe with candles and music – but are routinely interrupted even during this sacred time for yourself – you are bound to feel some resentment. Expect to have this time interrupted on occasion, but if you never can take time to yourself, please look for some help. Even a Senior Companion from the Retired Senior Volunteer Program (RSVP), or a friend, may be able to sit with your loved one. If that isn't possible, it's time to look for a few hours of in-home help. Everyone needs some peace – even a caregiver.

Caregiver Confession #7: "Nothing I do pleases them – they are never happy."
See number two above. This behavior is often not about you. It's about them and their unhappiness over all of their losses. Do your best to detach from the criticism and get breaks when you can. Not taking criticism seriously is the best way to avoid resentment. Trying to understand why they are so critical can help (I'm not talking about historic family abuse here – just crabby, complaining behavior).

Caregivers' Final Confessions

Caregiver Confession #8: "I just want to scream, run away, hide somewhere, or change my identity."
This is likely to happen to even the most patient caregivers. It's human to feel overwhelmed by the constant neediness of others. It's time to get some help with your caregiving so you can have a break. However, if you feel like this consistently, you should check with your doctor in case you are depressed or have other health issues of your own.

Caregiver Confession #9: "Maybe if I just take all of Mom's sleeping pills I won't have to wake up to this again."
Get thee to a doctor immediately. Even occasional thoughts like this can mean you are clinically depressed and feel life is hopeless. Please get medical help now.

Caregiver Confession #10: "She is suffering so much. She's been half dead for months. Why can't she just let go and die?"
Believe it or not, this is a common thought. You aren't a bad person. Why would you want to watch day in, day out suffering, where the quality of life, such as it is, is poor. Getting hospice care for the individual can help a great deal. Hospice staff counsels family members and they generally have volunteers who can help you. You need breaks, even if the care receiver could die when you are gone. You can't sit by their bed side every minute, for months. There are worse things than death, so drop the guilt. You aren't the only one who has had this thought.

Feel better, now that you know you aren't alone with your thoughts? I'm sure you can add your own "confessions" to this list. You may even think , "Oh, I've thought worse things than this!" If so, share them with caregivers at aSsupport Group. You will quickly see that you aren't alone.

The main point is that having passing "bad thoughts" is normal. You are tired, stressed and pulled in all directions. People are crabby to you and seem ungrateful. It's human to have negative thoughts.
However, if you find yourself consistently thinking in this negative manner, it's time for outside help in the form of respite care for your loved one, breaks for you, or even counseling and/or medication for yourself. You may be depressed. That doesn't mean you are bad. You are just human. It's time to accept your humanity and get help.

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Saying "No" Means "I Love You"

How does a caregiver know when he or she can no longer manage the daily caregiving routines and planning responsibilities? What signals alert the caregiver that he or she is in trouble of getting lost in caregiving? Can a caregiver who cherishes a loved one set limits on responsibilities without feeling guilty or morally bankrupt? These are questions at the heart of successful, long-term caregiving. Unfortunately, for most caregivers, these questions do not arise until they are feeling overwhelmed and depleted. Being able to say, “No, I can no longer continue to provide care in this way,” may not only save the caregiver from emotional and physical burnout, but can also open up opportunities of shared caregiving responsibilities with others while deepening the level of honesty and openness in the relationship.

Saying “No” may seem like a harsh statement to a caregiver who prides herself on being a helpful, kind and loving person. In fact, most caregivers choose to become one because they feel a moral imperative to do so. This imperative may come from a number of sources including family relationships and roles, friendship ties and social expectations. Families often select the primary caregiver from cultural norms such as the youngest unmarried daughter or the oldest son as being responsible for a parent’s care. Friendship ties provide many single elders with caregivers who act in lieu of local family members. In the United States, the social norm is for family and friends to provide care to elders first before the government. Current statistics show that the majority of elder care is provided by families and other members of an elder’s informal social network. Proximity is also a component in caregiving. The closer one is geographically to a loved one, the more likely he or she will become the caregiver. Personal values derived from one’s faith or spiritual practices may lead a person to feel called to provide care. Moral decision making based on humanistic values such as, “Everyone has the right to stay at home if they choose no matter what,” may encourage a person to become a caregiver. Wherever the imperative is coming from, the role of the caregiver is intimately linked to that person’s code of ethics and the way in which the person chooses to act in his or her own life.

What does saying “No “mean anyway?

Is it a final giving up of duties that implies the caregiver is ending the relationship and leaving a loved one to fend for himself? Maybe the “No” means, “I’m tired and feel trapped.” Maybe the “No” means, “I have failed to be all I could be as a caregiver.” Maybe the “No” means, “I can’t do what you want me to do and I feel inadequate.” Or maybe the “No” just means, “ I am so tired, I have to stop.” The word “No” can have different meanings for different people. “No” doesn’t necessarily have to have a negative connotation attached to its meaning. “No” can be understood as a pause, a time for reflection, a breathing period or, “Let’s stop and talk this over. Things need to change.” Exploring the meaning of “No” for the caregiver is often the first step in establishing better emotional boundaries.

Healthy emotional boundaries are important in helping the caregiver distinguish between his or her own needs and the needs of the person being cared for. Boundaries remind the caregiver and elder that their relationship is between two adults and that there need to be expectations of mutual respect and autonomy for the relationship to be successful.

The ideal time to discuss caregiving boundaries is in the beginning when both people are new to the process of developing this special relationship.Talking about needs in a calm and supportive way allows each member to feel the other’s concern while acknowledging that the relationship will have some limitations. In an idealized world of caregiving, the care recipient could turn all problems over to the caregiver without any worries or stress and the caregiver would have limitless capacity for love and work. But neither of these situations is realistic. Getting off to a good start by talking about boundaries as part of a healthy relationship lays the groundwork for developing emotional resilience and flexibility to respond to an increase in the elder’s care needs, while managing the inevitable caregiver stress.

In practice, most caregivers address the issue of their own limits after the caregiving relationship gains full steam. Caregivers often get inducted into helping through a sudden major health crisis of a loved one (such as a heart attack) or by the slow but steady process of taking on tasks and responsibilities for the elder as she experiences aging and the loss of function. In either situation, the caregiver and care recipient aren’t necessarily thinking about being in a relationship but about getting the jobs done that need to get done. In the first instance, addressing the immediate and critical health care needs of the elder takes precedence over long-term care planning. However, as soon as the elder is stable, the time is right for the caregiver to discuss boundaries and limits. In the second instance, caregivers need to raise the issue of boundaries as soon as they begin to detect the first signs of their own stress or burnout. Signs such as avoiding the loved one, anger, fatigue, depression, impaired sleep, poor health, irritability or that terrible sense that there is “no light at the end of the tunnel” are warnings that the caregiver needs time off and support with caregiving responsibilities.

Setting emotional limits involves a process of change with five key steps.

First, the caregiver must admit that the situation needs to change in order to sustain a meaningful relationship. Without change, the caregiver risks poor health, depression or premature death. The primary caregiver is such an important person to the elder that impaired caregiver health puts the elder at further health risk. Second, the caregiver must reconsider personal beliefs regarding what it means to be a good caregiver. Since the caregiver generally has moral expectations of his or her own behavior, redefining what “should” be done to what is reasonable and possible to do can be a liberating moment. This may include lowering some expectations of one’s ability to do things and delegating tasks to others. Third, the caregiver needs to identify key people (friends, family or professionals) who can support and guide the caregiver through this change process. Frequently, caregivers join support groups with other caregivers to reinforce their commitment to change or hire a geriatric care manager coach. A support group is also a place to express anger, anxiety, frustration and sadness about the caregiving experience instead of inadvertently having these feelings pop out during a tense conversation with a loved one. Fourth, the caregiver needs to develop communication tools to express the need for boundaries. Honesty and simplicity in talking about feelings and needs does not come easily; particularly if one is not familiar with having these types of direct discussions. Lastly, the caregiver must be able to sustain this new approach while allowing the elder time, to react and express his or her feelings about the changes. Readjusting the balance in any relationship takes time, especially when both members have competing needs.

There is a simple but effective communication approach that can help caregivers express feelings and set boundaries.

This approach encourages the caregiver to speak from an “I” point of view, in a non-accusatory fashion, expressing the caregiver’s limitations or feelings and offering an alternate solution. Some examples of “I” statements are:

“I can no longer drive you to all of your medical appointments due to my work schedule and my limited time off. I know this will be a change for you. I suggest we look into other transportation options such as the Busy Bee Medical Transport Service.”

“Mother, I am unable to continue with the responsibility of cleaning the house weekly. I want to spend my time with you on other matters. I know it’s hard to let newcomers help, but I think it is time to hire a homemaker service you would be comfortable with.”

“Dad, I can no longer assist you down the outside stairs. I am worried about your safety and mine. I believe we need to build a ramp for easier access to your home. I have found a carpenter who has reasonable rates for construction.”

In each of the above statements, there is a presentation of what the speaker cannot continue to do, an acknowledgement that the change will have a consequence for the elder and a suggested solution. No attempt is made to make the elder feel guilty about the effort the caregiver is expending or the caregiver’s stress level.It is understood the elder knows the caregiver is working hard. Setting the boundary is the caregiver’s responsibility. There is, however, an invitation for discussion and joint problem solving. At first, expressing boundaries in “I” statements may feel awkward, but with practice, caregivers can learn to raise difficult topics by establishing a comfortable atmosphere for discussion.

Initially, the caregiver may experience resistance on the part of his or her loved one to dialogue about changes as to the provision of care. Gentle persistence is needed to attend to the need for new boundaries. Discussions that can be introduced at a time when both individuals have lower stress and are feeling quiet and comfortable with each other are discussions that have a greater chance of success. Avoid making decisions about change during emergencies. Waiting until the situation is calm, and both parties can take time to think through issues, creates an atmosphere of joint decision making and ownership of the outcome. Making changes in small steps toward a larger change gives everyone a chance to adapt comfortably.

Caregiving is a dynamic relationship that evolves over time. As caregiving tasks increase, so will stress on the caregiver. A caregiver and his or her loved one will manage this challenge successfully if each person is able to express directly what he or she needs, wants or can do. A relationship that allows for and respects boundaries and individual limitations can expand to include other caregivers without the risk of lessening the importance of the primary relationship that sustains the elder in the aging process.

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How to Avoid Caregiver Guilt

Guilt is a normal part of caregiving -- you wouldn't be human if you didn't experience it, no matter how well or poorly you're doing the tasks involved. But one type of caregiver is especially vulnerable: the perfectionist.

Perfectionist caregivers have high standards. They demand a lot of others, and more of themselves. They can't bear a late payment or medicine dosage, a messy kitchen, the first hint of a bedsore. And they're always feeling guilty about something going wrong -- because real life never can live up to impossible standards. Things happen in caregiving. Aim not to be an "A-plus" caregiver, but a "B-plus" one. Your loved one will be happy and well -- and you'll be sane.

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