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Let’s Talk About Guilt and the Emotional Journey of Being a Caregiver

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Guilt: it seems to go with the territory when you’re a family caregiver, right? You feel guilty not spending enough time with Mom. But when you’re with her, you’re plagued with guilt about neglecting family and friends who may be needing your time as well.

Or, you can’t stop blaming yourself for losing your temper with Dad. And the thought of placing him in a nursing home has your stomach tied in knots. You decide to take a night off – get away from it all at a movie with a friend. But you spend the entire time worrying about what your dad is doing and feeling guilty that you aren’t there with him.

An Emotional Roller Coaster

Many emotions surface when you take on the job of caregiving, noted Donna Schempp, LCSW, writing for the Family Caregiver Alliance in an article entitled “The Emotional Side of Caregiving.” “Some of these feelings happen right away and some don’t surface until you have been caregiving for a while. Whatever your situation, it is important to remember that you, too, are important. All of your emotions, good and bad, about caregiving are not only allowed, but valid and important,” she added.

“Many feelings come up when you are caring for someone day in and day out. Many caregivers set out saying, ‘This won’t happen to me. I love my mother, father, husband, wife, sister, brother, friend, etc.’ But after a while, the ‘negative’ emotions that we tend to want to bury or pretend we aren’t feeling come up. Caregivers are often reluctant to express these negative feelings for fear they will be judged by others (or judge themselves) or don’t want to burden others with their problems.”

Coping with Guilt

So how do you cope with this guilt? “You need permission to forgive yourself,” Schempp said. “You can’t be perfect 24/7. It’s impossible to be in perfect control of how you feel at all times. We all carry around a lot of ‘shoulds,’ such as ‘No one will do as good of a job as I do, so I have to be here all the time.’ Or ‘If I leave and something happens, I will never forgive myself.’ Consider changing guilt into regret, ‘I’m in a difficult situation and I have to make difficult decisions sometimes.’ ‘I regret that I am human and get impatient sometimes.’ ‘I am doing the best I can even though things go wrong from time to time and I regret that I am not perfect.’ “

Four Emotional Guilt Trips

The following are four “guilt trips” that are part of many family caregivers’ emotional journeys and what you can focus on instead:

1. I feel guilty for not spending more time with Mom. 
When Mom begs you to stay longer or to come visit more often, it can feel like a real guilt trip, especially when busy schedules and distance make visiting difficult, and when you know your visits are the highlight of her otherwise lonely existence. Yet trying to satisfy all the demands of work, family, and everything else will only stress you out and keep you from making the most of the time you do have.

What to focus on instead:
Try to make the time you do spend together as meaningful as possible. Check out these tips for how to get mealtime conversations going or for sharing memories with your loved one. For the times you can’t be there, consider how companionship services could help. You won’t feel as guilty "abandoning" Mom if she has someone coming on a regular basis whose company she enjoys and who can provide conversation, facilitate activities, help around the house, and provide transportation wherever she needs to go.

2. I feel guilty when I lose my patience with Dad.
It’s pretty much a given that an aging parent will try your patience at one point or another. Family caregivers of an aging loved one with dementia who exhibits repetitive behaviors may find this is especially true. But there are more productive ways to handle impatience than to feel guilty about it.

What to focus on instead:
Patience typically wears thin when you’re worn out and exhausted. If you feel like you’re reaching the end of your rope, use that as a warning sign that you need to take a break. It’s important to care for yourself and make sure you’re getting enough rest so you can be at your best for your loved one. Put your energy into finding time for a break rather than dwelling on feelings of guilt. (See number 3.)

3. I feel guilty when I take time to myself.
Putting another person’s needs before your own is a sign of love. You may feel it’s your duty to devote all of your time and energy to care for your parents the way they cared for you as a child. This is your chance to give back and you don’t want to feel selfish or let your loved one down by putting your needs before theirs. But you can’t ignore your own needs forever and it’s self-defeating to feel bad about indulging a little in yourself.

What to focus on instead:
The only way to sustain the love and care you feel your loved one deserves is to take good care of yourself as well. Remind yourself that you can be a better caregiver to your loved one when you get enough rest, eat healthy meals, and have a chance to attend to your own needs. Take a look at these "Caring for Yourself While Caring for Others" resources for tips on how to balance your loved one’s needs with your own.

4. I feel guilty for putting Dad in a nursing home.
Maybe you think it’s not what Dad would have wanted, or you wonder if there is more you could’ve done to keep him at home. But there’s no use dwelling on the past, which you cannot change.

What to focus on instead:
If there’s a chance Dad may recover from his current illness that renders nursing help necessary, start planning ahead to make the transition home possible. If it’s not feasible to move your loved one out of the nursing home, do what you can to make his time there as comfortable as possible. Visit as often as you can and make your visits meaningful (see number 3). Bring photos and decorations to personalize the room and help make it feel more like home.

Above all, remember that you can’t be an effective family caregiver if you don’t take care of yourself, both physically and emotionally.

Last revised: December 10, 2019

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Thoughts and stories from others
  1. March 28, 2021 at 8:09 am | Posted by Theresa Wils

    My mom has been to two board and care home. First one not a good fit meaning like a military home. Caregivers are not allowed to interact with the elderly. Second one, my mom was not treated well by one of the caregiver. I took my mom home last sept 2020 . I found two caregivers to look after her Mon to Fri. Weekends it’s me and my husband. Mom is wheelchair bound and has dementia. I work full time and when I get home I want to unwhine relax a bit but I dreaded to come home as it’s my time to look after mom. I have back pain due to lifting and my thumb is numb. I’m thinking of moving her back to a board and care but guilt of doing it is holding me.

    Reply

  2. February 20, 2021 at 11:08 am | Posted by Ann kelly

    I was my dad's caregiver for 10 years . Dad had a bad stroke but with a lot of family support and rehab he was able to regain half use of his body . Dad never spoke again (other then ya, ya , ya and the f word ) a few other words too but minimal . He was able to toilet himself with few accidents and could feed himself as long as the food was made . Never the less I was responsible for him . His md appts , His safety , meals laundry , etc . And more importantly I felt responsible for his happiness . I think that is what kills me in side . As a single parent I was still trying to work and jungle these resposibites ( dad always felt he was helping and holding his own ) which he was to an extent . Toward the end as I started getting older and my kids became adults I started to feel a bit bitter that this was my life . Proud but bitter. When dad would call for me cas he needed something i was like " what now ?! " for most of the years we spent weekends and all days together in the living room . After covid I started going up to my room on weekends and left him in the living room ( I think his feeling were hurt ) but I needed time . He passed away in December and I feel so bad and guilty for leaving him in the living room by himself on weekends cas I know he wanted to be part of the company . God knows I miss him so so much . If I could have gone back I would have spent every waking moment with him now that I see what it is like without him . So yes I agree these post . It is exhausting . In my case being responsible for everything but at least he could dress and feed him self . So my story us a bit different but enjoy every moment . These days will only be memories one day . Make the best of them

    Reply

  3. February 10, 2021 at 9:09 am | Posted by Lynn

    I’m full of guilt because I feel such resentment about looking after my mom. I don’t want to feel this way And of course she has no idea But I have no life She can’t take care of herself She cannot even do the basics of life for herself She can still feed herself and that’s about it I dress her, bath her, make her meals, bring her medicine It’s been a year And I feel buried alive I hate feeling this way I keep up a happy front for her and others But inside I’m struggling

    Reply

    • February 20, 2021 at 11:42 am | Posted by Ann kelly

      I love your honesty . I think a lot of caregivers feel this way and feel guilty for feeling this way but it is hard . It's being sellfless to a whole different level . It's not easy !

      Reply

  4. January 27, 2021 at 7:35 pm | Posted by Cindy

    My husband has ALS. It’s been a fast progression and at 6 months he was already in a wheelchair. With Covid I got laid off so since April 4/2020 I have been his only caretaker 24/7. Lately I’ve been feeling that it’s to much for just one person and I’ve gone from being a wife to a nurse. My life revolves around his needs. I can’t take time off because he prefers me do everything when it comes to bodily functions. My family started out spending more time with him but now.... and my parents live in my basement suite. I’m burnt out and I’m sad because he doesn’t have much time left snd between winter and covid there isn’t much to do. I have no right to be resentful. He would take care of me if roles were reversed. I’m just tired and not sure how to get my mojo back

    Reply

  5. January 26, 2021 at 9:20 am | Posted by anna Brown brown

    My story is much the same .except my mom was 94 years young. To mom, she always was her own boss, even up to her death. Very much a perfectionest with everything I mean everything. Growing up I felt the heat of her presence, for her it was all about love and food and cleanliness and I did it all for you she would say.. Unfortunately, her father and mom were very hard on her growing up and the war did not help her fears . She was very resourceful in her older years but she had become lonely and needy. I always tried to give her the best but she would always decline from excepting it .from giving her a new apartment to live in buying her food at times so she did not need to go out. I had people come in to help her but they were not good enough, She was difficult towards the end. She did not want to go to a home She wanted me to feed her make supper lunches etc and her life seemed to get worse. we had a lot of arguments because of her stubbornness until March I put my foot down she was transferred to the hospital on March 11th from there she went to hospice house and Passed on August 18th. She made it for her 94th birthday on August 4. When she was sent to hospice house that was even more stressful because she wanted me there day and night my quilt lies from that and I have been suffering from stress and severe Axcieties ever since It has been 6 months since her passing. I have had a stressful life since march of 2020 I was also diagnosed with colon cancer that year so I had the surgery and two weeks later I went in to have my eye surgery in Vancouver Then after three weeks of that recovery mom was being diagnosed that she was going to die. I only had 2 weeks to recover from all that. After settling her estate and funeral my body went into a complete chain of events I crashed. I still have symptoms of stress and most is a quilt ...

    Reply

    • February 12, 2021 at 11:10 pm | Posted by laura collins

      Bless your ❤️ you are SUPER WOMAN for handling all that you've been going through!! Even that's a complete understatement!! If you were my daughter, I'd be the proudest!! And I'd want to make sure you were feeling supported and getting your needs covered. It sounds like you made sure your mom was in good hands because let's face it, we can't always be there. I mean we can't even be there for ourselves half the time, let alone others. It really does take a village and most especially as we age and need extra help. I mean we are all different and need more or less help at different times. It sounds like you really needed support and still do with the enormous amount of stress you've been under. My two cents - A house is a house... Human contact and care I think is the ultimate gift you can give and no doubt you did that for her ;) she knows!! Don't doubt yourself for a second!!

      Reply

  6. December 20, 2020 at 11:20 pm | Posted by Juliana

    My husband and I just bought a home, when I say just bought, I mean it’s so new we haven’t even unpacked yet. My dad was eager to move in with us into an in-law suite. I asked him the week of the planned move to give me a little more time because I was feeling worried and stressed of not being settled ourselves. But because I’m a pleaser and was trying to be accommodating and a good caretaker, I agreed. I moved him in 8 days ago. My father is 63 year old and a juvenile diabetic. He can be selfish and doesn’t take good care of himself. All of the cookies and coke have contributed to him showing signs of cognitive impairment. Everyday has been filled with drama since his arrival, the choices he makes have a ripple effect that directly impact me and my family. For instance, I asked him not to allow his cat outside because the cat doesn’t know his surroundings. I wanted to walk the cat around, so kitty could get familiar and then bring him back inside. I wanted to do this for at least a month. It’s very cold outside and I was only able to do this 4 times because of the additional work load I had assumed. My concern was that I didn’t want the cat to get lost or killed. What did my father do? He completely ignored my request and he let the cat out at night no less and the cat went missing for 24 hours. It upset me so much, I looked and called for the cat and I thought for sure he was gone but he showed up the next night. Thank the Lord. This still didn’t change my fathers behavior. Again this is just one example. Times this stress x 5 incidents or more a day x 8 days and you’ll get the picture. Besides cleaning up messes from sun up to sun down and making meals nonstop, and doing laundry. I haven’t had the energy or felt good enough to make any progress on unpacking my own things. We are living out of boxes while I have him squared away. He is extremely needy. I feel like I’m being stalked in my own home. My anxiety has become debilitating. This move has caused so much stress that I’m having severe indigestion and gastric issues and chest pain. He constantly hunts me down wherever I am no matter how long I spend with him. Every time he yells my name, I’m startled and my anxiety and pain increases. I’m 44 and the stress of this move is going to kill me. I’m physically suffering. I’ve been twisted in knots for the last week over what to do. I’ve realized he can’t live with me. I’m not able to do it. So I’m going to look for a condo and plan for part time home care and I’ll go to him on the other days. If he stays with me, I won’t be around to help take care of him. This decision is strictly out of self preservation. I CAN’T DO IT.

    Reply

    • February 12, 2021 at 11:20 pm | Posted by laura collins

      Totally supportive!! I'm happy that you're listening to yourself on this because if you are having digestive issues and major anxiety, I feel like those are definite signs your body, mind, spirit are yelling for help!! I think you have come up with a totally awesome plan that will leave everyone feeling better in the whole scheme of things! ❤️

      Reply

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