The Weight of Being a Caregiver

Caregivers carry a tremendous weight, which is why those on the outer circles of support need to give the main caregiver a chance to vent without judgment. Those on the outer circles need to offer support to prevent caregiver burnout. Moreover, caregivers need to be given space to feel whatever they need to feel.

Kimberly Williams-Paisley tackles the weight of caregiving in this latest installment of our online book club speaking about Kimberly Williams-Paisley’s book, Where the Light Gets In. She writes about her mother’s experience with primary progressive aphasia.

Space to Speak

Caregivers need to be given a space to admit what they’re feeling. While Williams-Paisley’s mother is in an appointment, her father tells the family how he feels on page 81:

Dad knew we were well beyond small talk. He spoke rapidly in a whisper. “I’m tired,” he said. “Your mom is really challenged at work. We fight a lot more at home. She wants to do everything herself, but she just can’t anymore. I want her to stop driving, but she’s stubborn, and I don’t know how to get the keys away from her.”

It’s not just about venting stress. By sharing his feelings, he informs his children where he most needs help as a caregiver. The day to day tasks are stressful, but he also needs support in helping his wife understand and come to peace with her limits. Venting gets everyone in the family on the same page, working towards the same goal.

Asking for Help

Sometimes help isn’t offered because the caregiver doesn’t let people know that they’re overwhelmed. Williams-Paisley admits about her father on page 132: “The truth was, he told me only later, the job was so hard for him at times that he felt uncomfortable asking anyone else to take it on.”

Moreover, he doesn’t think anyone else is up to the task. She writes on page 133: “Dad couldn’t imagine that anyone else would know Mom well enough to keep her from being hurt or even more discouraged than the disease already had made her.”

Of course, other people could do the job or help with the job. It’s not that the caregiver isn’t important, but there are other people who can help if they know what is helpful to do.

Accepting Help

Sometimes it’s pride that keeps the caregiver from sharing their heavy weight. Williams-Paisley’s father is proud to be his wife’s caregiver. On page 131, Williams-Paisley writes that her mother “didn’t realize how much Dad was doing for her. In fact, he seemed to take great pride in being the only one she wanted help from.” It makes him feel good to be needed. He likes that she trusts him and turns to him in her moment of need.

Moreover, her father also dreads the day that his wife will not know how much she needs him or will not need him anymore. On page 144, Williams-Paisley writes, “All the same, he wondered how much grief he would feel when this intractable stubbornness began to fade. Now, though, it was too intense, like a lightbulb with blinding wattage.” The now is intense, but it also shines a light on the loss that is coming in the future.

Do you feel a similar weight as a caregiver?

Image: Victor Freitas via Unsplash



  • Katy
    December 11, 2018 at 3:15 am

    Yes those on the outside of support need to listen without judgment . I read this book and one tip I gleaned was to use the resources she listed such as the Alzheimer’s Association who have been invaluable. They listen so well! At a certain point caregivers need to seek out formal supports versus informal supports.

  • Tired wife
    January 30, 2019 at 10:48 am

    Yes I am my husbands caregiver. OUr lives changed forever after his stroke.My career was affected., he had tremendous needs and then his family was passive aggressive to me. They did not like the change this made for them. I spoke the truth and set boundaries. I tried to keep him safe and be his cheerleader at the same time. He was angry, frustrated due to the aphasia and loss of his independence. Thank God for my family friends and neighbors.
    We were all grieving in our own way. Things are a little better after 2 years but he is still recovering. Not sure whats next . He is in his 40s and there are not a lot of community resources for those in the middle years. Stroke treatment requires more collaboration after discharge. families are left to fend for themselves. They tell you its neuroplasticity. The best resources are other caregivers and stroke survivors who have walked the walk.

  • Cadee
    January 30, 2019 at 2:06 pm

    I have been a caregiver for 17 years. I know my husband is frustrated not being able to talk well, read or write. When I try to help, he gets angry that I won’t let him do it himself. When I don’t help, he gets angry that I won’t help. His new frustration is that I CAN’T REMEMBER WHAT HE HAS FORGOTTEN??????? I am exhausted at the end of the day trying to figure out what he is trying to say. I know Aphasia is a horrible condition and I sympathize with him, but he is very negative and angry most of the time. He seems very self-centered and could care less if I am sick. I really did not expect my retirement years to be like this.

  • Angela
    March 14, 2019 at 8:14 pm

    I am the main caregiver for my Mother who has had Aphasia since her stroke in 2015. I understand her better than anyone but that also makes me the person to translate at Dr. Appointments or even at a drive up window. She gets frustrated if I don’t call her every day, even though I work a full time very busy retail job and she will call me first for even the smallest request. There are many things that contribute to this but I feel that I am the only person readily available. She has 2 amazing Sisters who have taken on taking care of her finances and help with medical things and without them I would not be able to get through the frustration. Mom just had a second stroke and has lost more words but is now even more emotional and easily upset. This step backwards will be a huge challenge and also she will be dealing with her Mother’s death who is in the last stages of Dementia and her life. I certainly empathize with all caregivers who take on this role in any form and you are all Angels!

  • Cyndi
    April 26, 2019 at 10:04 am

    My partner is 55 suffered a double stroke a little over a month ago, and has both expressive and receptive aphasia. His physical abilities are not effected but his ability to communicate and understand is. I feel like I have lost the man I have been with when he had the stroke. His family has plenty of opinions but no one is willing to do the work. He is frustrated, angry, and thinks I am not listening to him…as if Im the only one who has issue understanding him. His pride is a huge factor…I find myself telling him, it isnt my fault that you had a stroke, nor is it my fault there are words being used I do not understand. We have always treated one another with kindness, compassion and without judgement…I do not know this person…and my heart is breaking.

  • Joy Leland
    January 8, 2020 at 8:07 pm

    My sister had a massive stroke in Feb. 2015. My hubby and I had recently moved away from all our other friends and family to live with my mom, so she could stay in her home, and were caring for her at the time. For a short period of time my mom and sister were in the same nursing facility. Mom came home but her health really declined after my sisters stroke and she was back in the nursing home with a diagnosis of lung cancer, on top of already having COPD. My sister wasn’t doing well, either. The stroke robbed her of her ability to speak, to walk, she was paralyzed on the right side and she was terribly depressed. I had already decided to bring her home to care for her, when our mom was put on hospice. So I turned Mom’s dining-room into a hospital room for two, in readiness for them. Mom came home first and died in her sleep that first night. I brought my sister home about 6 weeks later and that’s when I really jumped into the deep end of the caregiving pool. And I had no idea what to do. But I knew I had to do something. I took care of my sister, with the only help coming from the local COA, who sent an aide for 2 hours/day. She had good core strength, so transferring wasn’t as hard as it could have been, and she had control of her bowels, so we had that going for us. But she needed help with everything. Everything. I had no help from any of my sisters many (so-called) friends or family who lived nearby. And I BEGGED for help. She was in my home for about 2 years, then was able to live in her own home (right next door to me) with full-time aid and attendance, where she lived for another 2 years. But I was still overseeing everything and was at her house more than I was at my own. I had no time at all for anyone else, not even myself. I begged for people to visit her thinking it would give me a few minutes to think my own thoughts, but, the few who came, wanted me to stay and translate. They were very uncomfortable around her, and they’d known her for years. I tried to tell people that she was still herself, but they disappeared into the wind. I got no help. I had a breakdown. Still no help. I finally had to admit to myself that I couldn’t care for her on my own anymore and last year I put my sister in a local assisted-living facility. We are both still adjusting and trying to accept that this is our new reality.

  • Paula Hukill
    June 26, 2020 at 2:16 am

    My fiance was beaten Dec 2nd and has a severe TBI, he has expressive aphasia and I’m his caregiver. I get no help from anyone . I get criticized by his family especially his mother. We had the best relationship before this happened, he gets so frustrated with me because 90% of the time I don’t understand him…I’m frustrated too. We have good days and bad ones. I have raised 5 good children, most of the time alone, and this is by far the hardest thing I’ve ever done. I feel alone.. my fiance died on that horrible night, and now I’m taking care of a stranger. I often ask why me and consider walking away, and then I catch a glimpse of him in there and can’t give up on him.

  • Puja
    July 8, 2020 at 5:40 pm

    My husband had a stroke in 2019 at the age of 35. I was on dialysis and waiting for kidney transplant , financially fully dependent on him. He lost whole Speech area in brain. He used to talk 16hrs getting worried about me. what will happen ? He lost his job . I asked his friend ,parent to spend some time with him so I can get some time but they want me there to translate .. I mean take some effort to understand him. His so called friend, family talked to him minimal only . Its fustrating to be on toe all the time.. what he wants… what he is thinking when he is stuck in conversation… He will say “You dont remember what I am talking about? “… He is foodie he cook at home now he forgot all his dishes …. He keep saying ” you dont remember what I made?” . Its fustrating to take care of yourself and him . He dosen’t understand went I am unwell. He is making progress in speech therapy but is always negative.Its streefull to keep him cheering up whole day I burst out some time. I know I shouldn’t its not his fault. I know if it would have happen to me he would do his 300% for me . We have to go back to our home country and start everything from sratch . His parents are also dependent in areas on us. Its very fustrating to whom to care about him, me or his parents?? He is changed person but his love me is not changed. I will try my best to care for him and try to make him independent .

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