January Caregiver Connection: Handling Guilt

It is normal to feel guilty during the process of caregiving.  But feelings of guilt aren’t always healthy or appropriate; we may set unrealistic expectations for ourselves, and feel guilty when we don’t meet these expectations.  In this case, guilt can drain our emotional energy and make us less effective caregivers.  Luckily, there are things you can do to deal with this potentially toxic emotion.

Acknowledge and accept your feelings

Here’s a scenario that may sound familiar: you’re trying to get some work done around the house, and your loved one with dementia is following you from room to room, asking the same question over and over, distracting you and complicating the things you’re trying to do.  Your loved one asks “When is dinner?” for what seems like the thousandth time, and you snap “Mom, I just told you, now will you please leave me alone for 5 minutes?”  Your loved one feels confused and hurt, and you feel guilty.

Dementia causes people to behave in ways that can try our patience, and it’s only natural that we may become irritated from time to time.  In the scenario above, the caregiver doesn’t just feel guilty for snapping at their loved one, but also for being irritated with them in the first place.  The impulse to deny negative feelings like irritation, resentment, and even anger can be counterproductive.  Recognizing these feelings allows you to find appropriate ways to deal with them before they get the better of you, and lessens the burden of guilt.  Trying to suppress inevitable negative emotions, and feeling guilty when you can’t, only makes caregiving more difficult.


Read more about learning to let go of expectations, accepting things you can’t change, recognizing your limits, and asking for help… 

Redefine successful caregiving and let go of “should”

At the end of the day, your goal as a caregiver is to keep your loved one healthy, safe, and as free of distress as possible.  A person can be healthy, safe, and free of distress even if they are wearing clothes that don’t match.  Pick your battles, and learn to ignore the guilting voice in your head that says “You should…” or “Mom shouldn’t…” especially when that voice’s expectation is that your loved one behave and perform tasks like they did before they had dementia.

Even the perfect caregiver – if such a person existed – couldn’t control the changes that dementia causes.  Successful caregivers are those who let go of seeking perfection and adjust their expectations around their loved one’s changing abilities.  They will feel grief as their loved one’s abilities diminish, and they will feel frustration during the trial-and-error process of managing day-to-day care.  But they shouldn’t feel guilty for accepting changes that are beyond both the caregiver’s and the person with dementia’s control.  Maybe it’s ok if they eat using their hands instead of a fork, or sometimes have a sponge bath instead of a shower.  If they are healthy, safe, and happy, you’ve done your job, and can feel satisfied, not guilty.

Accept the situation and consider the person

Acceptance of the situation extends beyond acknowledging negative feelings and making peace with the fact that your loved ones abilities are changing.  It also means accepting things you can’t change, and directing productive energy towards the things you can.  You can’t change the objective reality of the situation, but you can do your best to change the way you react to it.  You can’t change the way dementia affects your loved one, but you can educate yourself to ensure that you are ready for the changes when they come.  You can’t change your own limits, even if you’d like to, but you can reach out for and accept help from others.  When you are feeling frustrated, remember how dementia affects the way a person experiences the world.  They operate according to a different system of logic, they lack the reasoning ability to recognize that they have a disease, and they are losing the ability to regulate their emotional impulses.  If your loved one is still in the early stages, be patient with them while they work through their own grieving process, and consider how it might feel to lose control over many aspects of your life.  Offer yourself as their ally and advocate, and support their independence whenever possible.

Respect your needs and set boundaries

Many caregivers also feel guilty about taking time to care for themselves.  Taking an afternoon off to see a movie, have lunch with a friend, or take a walk in the park may seem terribly self-indulgent when your loved one relies so much on you, but this is precisely why these acts of self-care are essential.  Dementia care requires a caregiver who is attentive, patient, in good health, and able to transmit positive energy to the person they care for.  If you are stressed out, depressed, neglecting a health problem, and poorly rested, you won’t be able to give the level of care that your loved one relies on you to provide.

You will never completely satisfy a person with dementia’s need for reassurance or comfort, and in trying to you might give until you are running on empty.  Being a good caregiver doesn’t require unconditional submission to the needs of the person with dementia; sometimes doing the difficult work of setting boundaries in order to preserve your strength as a caregiver is just as great an act of love.

Reach out to others

It is very important for caregivers to have someone in their life, a trusted friend or family member, a leader at their place of worship, or a support group, to talk to.  Just giving voice to your feelings of frustration and guilt can help release them.  In a support group setting, others will likely be struggling with the same frustrating situations as you, and hearing this might help you forgive yourself for not always getting it right the first time.  Talking to someone can give you fresh perspective on the situation, pressing the “reset” button on the spiral of complicated emotions that stem from caregiving.

The Alzheimer’s Association Capital of Texas Chapter is proud to be affiliated with a large network of support groups throughout Central Texas.  Call 512-241-0420 to get a referral to a group near you.

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