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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 6, 2020 at 6:07 pm | Posted by Valerie

    I'm just grateful to read other people's comments which remind me that I'm not alone with the way I feel sometimes as the caregiver for my elderly mum who I love dearly. Thank you all for sharing.

    Reply

  2. December 30, 2019 at 8:38 am | Posted by Stephana

    In March of 2019 my family had to make the decision to put Mom into a nursing home and incredibly lovely place with good administrators and care givers . Mom was stubborn-had not prepared for the future and was not wealthy. She was living in an apartment complex for seniors and handicapped( very pretty and well cared for in NY state) But serious breaks illnesses and recent falls made us finally make this decision. At first we thought home care would work but her dementia made it hard for her to do day to day tasks -and her intuitive skills made it her vulnerable to situations that could be bad. The tough part is we live 1000 miles away. Mom refused to move closer(we tried for years) but NO GO! So we call and visit every 3 months. Luckily we have a couple of relatives who check in on her every couple of weeks. Sometimes it makes me so sad but she made her thoughts clear and there was NO WAY to make her move. The dementia took it's toll over a year and a half period and we suddenly had to make decision s for Mom's safety(mental and physical) Things you can do to help yourselves and parents if they can't afford a nursing home. Get them on Medicaid .Work with a Medicaid specialist to help expedite the process which can be tedious especially if the family lives out of state. Make sure health care proxy's are up to date. Make sure you have all Mom and Dad's medical info and doctors phone #'s.. All of this will help the process greatly. Will you ever stop feeling guilty completely? NO. Get Mom a simple cell phone so you can stay in touch with your parent while they are in the nursing home. It really makes a difference. Luckily Mom is still capable in many ways for now. Cry when you need to and talk to others. There is never an easy solution but it helps to have people to talk to. What comforts me is knowing Mom is in a beautiful facility and she is still social and lovely in many ways....Take care

    Reply

  3. December 21, 2019 at 1:42 pm | Posted by Tim

    I'm in the same boat. I really appreciate this article. It was shared with me by another caregiver. We are both 60 with my 85 year old mother and my friends 86 year old father. It's so much more difficult than others often think. Not experiencing the life of a caregiver does not equate to the experience we go through. I had no idea and couldn't understand why caretakers often got so frustrated. I do now. Thank you so much, I'm sharing this article with others.

    Reply

  4. December 20, 2019 at 9:36 pm | Posted by Lanie

    I have been caring for my Mother since 2006..moved in with her around 2013....it has been an uphill battle...lots of "why me" questions...especially since I am not the oldest child..I finally start receiving a little help from one of my siblings..and "little" is stretching it. When you are the one doing..and all looks good from a distance...others feel their help isn't necessary OR they fear offering you help because you just might say "Yes"...with all that I have been through, sickness from stress, feeling overwhelmed, fear, anger (being a caregiver after early retirement was not on my list of THINGS TO DO)..anger because my siblings never stepped up to the plate, never offered...you see everyone has their own agenda and not everyone will be willing to sacrifice their life for another..loss of my baby boy (33) in 2018..to make a long story short...today I have answers to my WHY ME questions...Caregivers to relatives are very special...everyone cannot do what we do..I do not have a background in Nursing...my background is in caring...caring enough to make the necessary sacrifices in my life just so my Mom could stay home and receive the care she deserves as she ages...like any aging elderly being deserves. I am her daughter, I am her advocate, I am her driver, I am her bookkeeper, I am her housekeeper, I am her chef... out of 5 children I am the one. Sure I get tired, frustrated, angry, disappointed, but when it's all said and done she suffers more than I do...my Mom is 97 years old...and I truly believe she is still here because she can live in familiar surroundings and she has me...a daughter who truly cares about her well being. Taking care of myself is very important also - the first thing I did was stop asking WHY ME questions (this eliminated my frustrations), stop being angry at my siblings for not being able to do what I do (this eliminated my anger and disappointments), pray for patience (still working on this one), and I finally accepted the fact that if my Mom could she would but she can't. Watching her age, body change, etc., is very hard and accepting the fact that she can no longer do what she did at a younger age can be painful...but she is still here. I was chosen to do what I am doing...even though I did not want to....I can and will continue until I can't or I am no longer needed.

    Reply

    • December 26, 2019 at 8:24 am | Posted by Teressa

      Dear Lanie, Your words were very helpful. Thank you for sharing.

      Reply

    • December 30, 2019 at 3:49 pm | Posted by stephana

      You are a a caring and good daughter.Not everyone is like you .. I hope your siblings give you a break every once in a while. Sometimes you have to assert yourself...and be good to yourself. That is also important.I was a private nursing assistant years ago...because I truly love caring for people and have always loved the elderly.My great grandmother was 100 and I was so happy to have known her. BUT again..be good to yourself and ask for help or respite when you need to or you will wear yourself out. If not siblings there is respite care for elders as well. Take care

      Reply

    • January 2, 2020 at 3:16 pm | Posted by Karen

      I love your words; “ I don’t have a background in nursing, but a background in caring.” That’s how I feel all the time. I tell people “I’m not a nurse but I’m a really good caregiver. I’m taking care of someone that’s not even family but I love her so much and I love seeing her thrive and I love knowing that she can count on me. It all comes with sacrifices but I wouldn’t give up a day spent with her.

      Reply

    • January 2, 2020 at 6:51 pm | Posted by Kate

      I understand Lanie, my story is similar to yours. My mom was also 97 years old. I was the primary caregiver for the last 5 years. My only brother passed away before my parents did, one sister lives 3 provinces away and one older sister half hour drive and retired. I would have to go on holidays for her to step up to looking after mom. My mom passed away end of Sept 2019 while I was on holidays and my older sister was with her. I miss her so much. When I got tired and stressed I told myself to relax and enjoy my moms company because a day would come that it would end. I have very little regrets and mom and I were very close. Special memories we made together that rest of family didn't get. I also think this has been the hardest for me because of the time I spent with her, every 2 days and some weeks it was more. It took 90% of my time and now I feel lost. Need to think about this new year and what I am going to do for myself.

      Reply

  5. September 5, 2019 at 3:54 pm | Posted by Elaine Hay

    I have my 91 year old mother living with my husband and I. She is physically able, but was diagnosed with mid level dementia a year ago. Her long term memory is very bad and short term memory is getting worse to the point I am repeating things I said ten minutes ago. So alot of patience is required. We have had her living with us for 6 years with maybe 2 visits to my sister's place for a couple of weeks during this time. My sister lives in another province on the east coast. My brother (who lives 30 miles away) comes to take her for breakfast once a month for 45 minutes. My brother and sister call her a couple of times a week. Guess they think they're doing their part. I am 69 years old and my husband is 71. He is caregiver (visits daily) for his 88 year old aunt who has no one else. We both have part time jobs to make ends meet and are exhausted both mentally and physically. On the surface, to others who have not had this experience, it would seem admirable and not so difficult. that is so far from the truth. We have absolutely no life together and no specific end in site when we will be free to live our own lives. I am resentful because I can't even have people to our home without my mother being present for everything and my mother has our guest room so I can't even have my grandson stay over. I am expected to be her full time companion and keep her busy with jobs so she can feel useful....except I have to do them with her. I am left with no time to do what I want to do. She tells me to just go about my life and not worry about her. When I do that for one day she comes to me and wonders what she has done wrong and why I'm staying away from her. I suggested she would do better in retirement living (memory care) where there would be other people to socialise with and things to do. I tried to explain to her that me being the only person she relates to and counts on, cannot work for me any longer. There needs to be alot more talked about in our society regarding aging and senior living plans. Many in my parents generation really didn't think ahead very far ahead or wonder what would happen if they needed help. This subject should be something for consideration for people in their mid forties or earlier. It is not fair to expect that your children will pick up responsibility for your end of life living circumstances and affairs concerning wills or living will issues. OR make us the "bad guys" who put you in a home. Each individual should takes responsibility for their own physical and mental health care. I would never ask my daughter to have me live with her, having had this experience. There are most certainly, worse tales than mine and I really think that we as a society need to address aging issues and present choices for people to consider for their future and plans that make growing old not so uncertain.

    Reply

    • September 19, 2019 at 4:39 pm | Posted by Elizabeth

      Elaine I really feel for you and I agree with so many of your points. You have really taken on alot with your Mother and it is not something to be taken lightly. I can't imagine having one of my parents living with us. I have always felt bad saying that but you are the perfect example of what a sacrifice it is. I know other cultures feel more of a duty to take care of their elders, but I just don't see it as a positive thing. My parents are 88 and 90 and live 5 minutes away from me in a seniors residence. I am very lucky that they were very proactive in their planning for retirement and how to live their last years. But I am still struggling sometimes with feeling like I don't do enough for them, and feel like I can't quite live my life fully. My husband and I are just in our mid fifties. Whenever there is a health issue, and there have been quite a few, it is very stressful, because they rely on me for so much. My Dad is very anxious and gets stressed which rubs off on me! I actually gave up my job during one of those times and felt like I just couldn't handle it all. This is not an uncommon problem for many of us. I think you should look into getting some support, maybe from the Dementia, or Alzheimer's Society. And if your mother can afford it perhaps you should look into an assisted living home for her. You are right, she could socialize and be with others her age. You have done a great thing by supporting her but it can't go on forever. I hope you can get some help and that things work out for you. It helps just telling someone else about it, and venting a bit, so even a forum like this can help. Take care!

      Reply

    • December 23, 2019 at 10:38 am | Posted by Renita Henson

      Thank you for sharing. As I read your comment and the one following another thought for support to you and your mother is Adult Day Care. She could have lots of socialization in a safe and affordable place during the day time hours and allow you room for yourself and your husband.

      Reply

  6. July 1, 2019 at 12:30 pm | Posted by Tami Hill

    Reading the comments really helped me letting me know that I am not alone on how I feel sometimes. That it is a natural feeling that we are willing to deal with. My mom tries or do frustrate me at times and she realize that she is doing it. So I take deep breaths now before I respond to her. I am the youngest of my mother children she is 85 years old and I am 57 with a husband and grandchildren and work 3 days out of the week. I do get overwhelm sometimes because I still try to fit in my work outs to relieve some of the stress.

    Reply

  7. April 10, 2019 at 9:16 am | Posted by Dee

    Three months ago my mom came to live with me. My mom is 89 and I am 67 years old.I was the one chosen out of my three sisters to care for mom, only because she prefers my house. My sisters’ visits are often few and short. It’s not been a long time but I’m feeling overwhelmed. My mom has many illnesses that will never be healed just maintained. Her problem is she is stubborn and doesn’t do what she has to do ( take her meds, use her oxygen tank or use the vest to move the mucus in her lungs). I have to do most everything for her and it’s not like she can’t do for herself,she waits for me to do it (I give her her meds twice a day I cook I take her to her appointments. She has a standing appt. with her doctor every Monday). I do want to complain. I love my mom and I don’t want her to sense that I don’t want to do for her but I don’t fell I’m going to be able to not show my resentment. The guilt is real.I am the oldest of the sisters and I haven’t said anything to my sisters because I feel they on their own should know they need to do more. Thank you for allowing me to vent.

    Reply

  8. March 29, 2019 at 12:03 am | Posted by Jim K

    I am a caregiver of a 96 year old parent, and your article actually stressed me even more with comments such as the following: -Feeling guilt in not spending more time with elderly parent "especially when busy schedules and distance make visiting difficult". My Dad lives with me and my family, so distance isn't an issue. I'm retired, so a busy schedule isn't a big issue. The BIG issue is his neediness and inability to understand that I need my space and cannot spend every waking minute in his presence. You actually have a built in reason NOT to feel guilty if distance and busyness are your issues. However, I do not have a distance or a busyness problem, so my guilt is "especially" harder for you to understand? -"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." Your comments here are all guilt inducing talking points. Putting another person's needs before your own, you should point out, is a sign of insanity and will only wear you down and end badly. It is not a sign of love. It is a sign of the guilt that we're trying to eliminate from our lives. Likewise, giving back? The guilt some people feel when they do not "give back" is a terrible burden, and should not be normalized in your "matter of fact" fashion. Parents receive so much already from successfully raising their kids, nurturing them from helpless babies to successful adults. My children have NOTHING to give back to me when I am old. They have already given me so much. Likewise, I have nothing to give back to my parents. Quite simply, I am a caregiver of my Dad because I love him (although this should not make one feel as though they need to put the needs of their loved one above their own...already discussed), he does not want assisted living, and the situation has not gotten intolerable up to this point. Still, it is a heavy burden. - "I feel guilty for putting my loved one in a nursing home." So, I then must be a real bottom feeder jerk to think my dad might belong in an assisted living facility since he is not currently in need of nursing home care? You need to include assisted living in your discussion. Not doing so makes it appear to the guilt stricken that putting your loved one in anything short of nursing home care makes you an especially terrible child. Not a helpful article. At all. Actually made me feel much more guilty!

    Reply

  9. February 4, 2019 at 12:47 am | Posted by Lynne Bowden

    I needed to hear this so badly right now. Thank you!

    Reply

  10. May 25, 2018 at 11:31 am | Posted by Paul

    05/25/18 My mother of 84 yrs of age. Also suffers from Dementia I believe it was diagnosi since around the age of 70 . Since of then I've been her CAREGIVER .NO ,I'M DISABLED MYSELF. THE FEW FIRST YRS SHE WAS WALKING,COOKING,BATHING,WHAT WE ALL MOST DO EVERYDAY . HER DR. TOLD USE THAT IT WAS ONLY GOING TO PROGRESSE TO EVEN ALZIEMERS. SHE GETTING CLOSER . I'M 45 YRS OF AGE HAVE 2 SONS 1 GRANDDAUGHTER 2 SIBLINGS. YES THIS IS A REALLY SAD , HEART BREAKING, AND VERY STRESSFUL ESPECIALLY FOR BEING A MAN MY 2 SIS HELP BUT I LIVE WITH HER 23/7. IT'S A ROLLERCOASTER EACH DAY IS DIFFERNT THERE'S GOOD AND HARD DAYS. HAVE TO BE CALM AND HAVE PATIENCES. I WAS ALWAYS ON MY SIS CASES FOR NOT HELPING MORE THEN THEY SHOULD . UNTIL ONE DAY THEY TOOK HER FOR THE WEEKEND AS I WAS WALKING TO A FRIEND'S HOUSE ,I RUN INTO TWO LADIES SEATING BEHIND THIER TAILGATE OF THE TRUCK AT AN EMPTY PARKING LOT. HAD THINGS THEY WERE SALING MY EYES GOT ATTRACTED BY A CERAMIC ANGEL I ASKED HOW MUCH THEY BOTH SAID WHATEVER U WISH TO PAY. I ASKED IF THEY WERE SIS YES THEY SAID TOLD THEM U NO LONGER SEE SIBILINGS TOGETHER ANYMORE . MAKE THE STORY SHORT ONE OF THEM WENT THROUGH WHAT WE GO THROUGH SHE HAD 8 SIBILINGS . AS MY TEARS WERE RUNNING DOWN MY FACE . THE OTHER DIS TOLD ME IF I BELIEVE IN GOD?YES. THEN TOLD ME GOD CHOICE YOU CUZ HE NEW THAT U WOULD B THE BEST TO TAKE CARE OF HIS CHILD . JUST LIKE US WOULD U WANT THE BEST SITTER , DOCTOR,OR SCHOOL FOR UR CHILD OF COURSE. THAT ALSO GOD WELL BLESS ME LATER FOR DOING HIS WILL. I TOLD THEM I'M BLESSED ALREADY CUZ I STILL CONTINUE HAVING AND GAVE ME THE BEST MOTHER ANY ONE CAN HAVE . I NO WHAT WE FEEL .WE NEED TO TAKE EACH MIN THAT WE SPENT WITH THEM AND ENJOY IN AND IT WILL REGESTER AUTOMATIC INTO OUR MINDS AND HEARTS ONCE THEY R CALLED UPON TO WE WILL B IN PEACE CUZ THE WILL OF GOD WAS DONE TO THE FULLEST . WE R NOT ALOAN PEACE AND LOVE .

    Reply

  11. May 25, 2018 at 10:03 am | Posted by Paul

    I agree that its not easy taking care of our loved ones.

    Reply

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