How to Deal with Caregiver Guilt in Dementia: 6 Tips

Caregiver guilt in dementia is often caused by unrealistic expectations. Find out about 6 common misconceptions and get tips for dealing with guilt.

Feeling guilty is a common emotion among dementia caregivers

Caring for someone with Alzheimer’s disease or dementia, means you’re doing a tough job that comes with high stress and a variety of thoughts and emotions – both positive and negative.

Sometimes those negative thoughts can cause feelings of guilt.

Guilt is a complex and powerful emotion that can increase stress, drain energy, make you feel stuck, and negatively affect your mental health.

However, the things that make you feel guilty are often misconceptions or unrealistic expectations.

To improve your physical and mental health and reduce stress, we explain how 6 common misconceptions can cause caregiver guilt, why you shouldn’t beat yourself up for those thoughts, and how to reduce feelings of guilt.

 
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5 misconceptions and tips for dealing with caregiver guilt

1. Other caregivers are doing a better job

You might be feeling guilty because you have unrealistic expectations for yourself and feel like you haven’t achieved them.

When you hear from other dementia caregivers, you might think they’re actually living up to those expectations.

Based on what you see and hear from a limited outside view of their lives, it could seem like they’re doing a better job than you are.

You might think they’re better at coping with stress, hands-on care, working with family, or finding resources.

The truth is that you only know about a small part of their lives.

It’s not realistic to compare what little you know about their situation against your everyday caregiving reality.

Most likely, they’re struggling just as much as you are – or more.

In this situation, it’s helpful to be honest about how realistic your expectations are.

Nobody can do everything by themselves and there is no such thing as being “perfect.”

Set yourself up for success by setting achievable goals, getting help with caregiving, and taking time to care for yourself.

 

2. I treated my older adult poorly before their dementia diagnosis

Before your older adult was diagnosed with dementia, you might not have spent much time with them.

Or, they may have been acting strangely and you might have reacted with irritation or criticism.

It’s always tempting to look back and say “I should have…” but nobody knows what the future holds.

And you couldn’t have known that a medical condition was causing their behavior.

Because you didn’t know they had dementia, it was natural to assume your older adult was doing fine on their own or to have been annoyed or upset with unusual behavior.

 

3. I have negative thoughts and feelings about my older adult

Even though you care about your older adult, you sometimes might not like them.

It may feel like things have changed and now you’re only caring for them out of obligation.

They might disgust or embarrass you. You might want to walk out the door and never come back or even wish they were dead.

These are common thoughts and feelings among caregivers – everyone has had them at some point.

Remind yourself that this is normal and you shouldn’t feel ashamed or guilty.

What helps is to not try to control or suppress these thoughts.

Accept that you’re having them and remind yourself that no matter what you’re thinking, you’re still doing an amazing job caring for your older adult.

Then, start to work through these thoughts and feelings by talking with someone you trust or writing about them in a private journal.

 
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4. Other dementia caregivers don’t have the negative feelings that I do

Continuing with this theme, you might also feel like other dementia caregivers don’t experience the negative feelings that you do.

You may feel like you’re alone in having these feelings or that you’re a bad caregiver or bad child for feeling this way.

The truth is that every caregiver has these feelings. It’s only natural given how exhausting, stressful, and emotionally draining it is to care for someone with dementia.

One way to really understand that you’re not alone in feeling this way is to talk to other people who are caring for someone with dementia.

Talking to people in situations similar to yours helps you see that they’re experiencing many of the same feelings and going through similar challenges.

We recommend trying out in-person caregiver support groups as well as private Facebook caregiver support groups that have the added benefit of being available 24/7.

 

5. I get angry or irritated and sometimes lose my temper

Dementia caregiving can be frustrating and exhausting.

At one point or another, every caregiver has lost their temper and snapped at their older adult. After you cool down, it can be hard to forgive yourself for the outburst.

Just remember that getting angry is completely normal when you’re already pushed to the limit and challenging dementia behaviors flare up.

Maybe essential tasks like eating or bathing become nearly impossible. Or maybe your older adult makes mean comments or paranoid false accusations.

Instead of beating yourself up about it, think of different strategies to reduce the chances that you’ll have an angry outburst in the future.

You might work on noticing the signs that you’re about to explode so you can step away before that happens.

Then when you’re away from your older adult, use other ways to let the anger out, like screaming into a pillow, counting to 127, punching some cushions, or stomping around the room as hard as you can.

You could also notice if there are situations or times of day when you’re more likely to get angry or frustrated.

Before those situations come up, think of ways you could release some tension, get some time for yourself, or get some help.

For example, if you find that dinnertime is especially tough, take time beforehand to ease stress – turn on some music that puts you in a good mood (dance a little if you can!), watch a short funny YouTube video clip that makes you laugh out loud, relax with aromatherapy, or do a 2 minute meditation.

While you’re taking that brief time out, keep your older adult occupied with an engaging activity or have someone step in to help.

 

6. I shouldn’t want time for myself, but I do

It might make you feel guilty that you want to get away and have time for yourself.

You might think that you should limit non-caregiving activities to only the most essential things.

Or you may feel that if your older adult can’t enjoy life, then you shouldn’t either.

But it’s critical to regularly recharge your batteries by getting away from caregiving and taking time for yourself.

You could do some light exercise, catch up with friends, enjoy a hobby, see a movie, or just relax and do nothing.

Taking care of yourself with regular breaks isn’t anything to feel guilty about.

Making time for self-care enables you to sustain caregiving for the long run and keeps you healthy.

In fact, feeling refreshed and more positive actually improves your ability to care for your older adult.

 

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By DailyCaring Editorial Team


13 Comments

  • Reply May 17, 2021

    Anna

    i have been caring for both my mom and dad for 10 years now and 2 years ago my dad started getting Dementia it was borderline it was hard taking care of him and my mother within the last 5 months he as fallen several times had him in-home physical therapy but he was not willing to do the exercise’s in March he fell and hit his head
    due to the head injury he could not walk could not feed himself he went downhill with the ability not to do anything on his own the Dr said 50/50 chance of him walking again so i had to decide to put him in a Nursing home rehabilitation Center Which if felt so guilty about I am happy they let me go in and encourage him to eat and drink and spend as much time with him as i can it still very difficult because i am the only family that is here and i still have to take care of my Mother it is so true you go through so many emotions most days are good but there are days I do get frustrated upset feeling depressed and resentful i do have one sister but she lives out of state she does try to come and visit twice a year and help but she does work and has a life . At this point i know I’m doing the best i can and just spending as much time with my dad he is 91 years old and my mom is 88

    • Reply May 17, 2021

      DailyCaring

      You’re doing wonderfully caring for both your mom and dad, especially for so many years. It’s a huge amount of work and responsibility. Hopefully you can also find ways to take some time for yourself as well 💗

  • Reply May 10, 2021

    Anonymous

    wow this is great info i can relate to so much of it

  • Reply May 7, 2021

    Ronni

    My husband was diagnosed at age 73, dementia, paranoid schizophrenia, and alcoholism. 5 years before diagnosis was a living hell, i feared for my mental health and safety. He began to hit , shove and kill me. I cried a lot and felt like I was walking on egg shells, trying to keep him calm. He yelled about everything and nothing. I put him in assisted living 5 years and a nursing home 5years. I visited him several days a week, did his laundry, tended to his meds. he was nasty to me and other residents . He mellowed a bit in the nursing home ,but still gave staff a hard time. Very uncooperative. . I don’t feel guilty, just wished it could have been different. He died of Covid and dementia 2020. Its an ugly long death . R Yes, i still cry and miss him. We were married 60 years.

    • Reply May 7, 2021

      DailyCaring

      We’re sorry for your loss and very sorry to hear about the difficult situation you endured before your husband was diagnosed and moved to assisted living 😥

  • Reply November 4, 2017

    Vicki Proctor

    I love all of your articles my husband is 64 has had FTD since 2009 I had to take early retirement to take care of him I am 63 . I take care of him at home 24/7 he can’t bathe himself or feed himself sometimes , he started having bad seizures , he is now on medication for those . I try to explain these awesome things you share with my family. Do you have a sight I can print out information?

    • Reply November 5, 2017

      DailyCaring

      I’m so sorry about your husband, you’re doing an amazing job caring for him 💜 I’m so glad our articles have been helpful and thank you for recommending our website to your family. We’re in the process of making our articles easy to print. In the meantime, I’d suggest copying and pasting the content into a document and printing from there (sorry! I know that’s not a great solution). Printer-friendly functionality is coming soon!

  • Reply November 4, 2017

    Barbara

    I’m so sorry for your loss🙏🏼I have been feeling angry this week and don’t like it….my mom has Alzheimer’s & my dad is losing his eyesight. They are both 88 yo. I am the only family here & it’s a hard, overwhelming job!

  • Reply September 6, 2017

    elaine

    Thanks so much for your articles. They are very informative and full of useful informatio . Unfortunately I found your site a little too late, we lost mom last month to pneumonia. She had mild dementia, also. I was her caregiver for the past 9 years. So I tell everyone about your site. It still is of comfort to me, knowing my reactions and how I felt/feel is “normal”. Thank you for all you do!

    • Reply September 6, 2017

      DailyCaring

      I’m so sorry for your loss 💔 Being a caregiver is quite a rollercoaster of emotions and what you felt was 100% “normal” and to be expected 💜 I’m very glad our articles are helpful and am so grateful that you’re recommending our site to others — thank you!!

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