Considerations for Caregivers
/ Coping with Grief : Eleanor Haley
What’s Your Grief is obviously, above all else, a blog about grief. If it weren’t, the site would have to be called something like "Two Girls with A Lot of Complain-y Opinions about Life." Which does have a nice ring to it, but is maybe a touch too long
Anyway, in talking about grief, we also have a responsibility to talk about all the things that precede it, accompany it, and follow it. Death and grief are like the eye of a long and turbulent storm. For some of us, the storm hits out of the blue... while others can hear it for a long time coming.
We’ve lately had a few readers leave comments on the site about a unique part of their storm – the experience of caregiving. We'd like to take a few minutes to touch on this topic and, if at the end of this post, you're looking for more in-depth support, we will point you towards a few great resources that offer a wealth of support for caregivers.
The Physical Toll of Caregiving:
Let's start by addressing the physical aspects of caregiving. According to the Caregiving Action Network,
"Nearly three quarters (72%) of family caregivers report not going to the doctor as often as they should and 55% say they skip doctor appointments for themselves. 63% of caregivers report having poor eating habits than non-caregivers and 58% indicate worse exercise habits than before caregiving responsibilities."
Oftentimes caregiving gets added to a person's list of responsibilities, which means that caregivers can find themselves spread pretty thin. Being responsible for someone else’s care is a big responsibility and, depending on the situation, you may be on call to attend to this person’s needs 24/7.
When you are relied upon in this way, and when you feel as though it's up to you to ensure your loved one doesn't suffer, you may find yourself prioritizing their well being to the detriment of your own. You may find yourself ignoring things like...
...getting enough sleep
...taking time to eat well
...regular exercise
...personal doctors' appointments
...mental health breaks
...and more!
I know it seems like these matters can wait, but sometimes they can't. You need to try and care for your own needs whenever you can. Try to find small and constructive ways to take care of yourself, because when you are sick, exhausted and stressed out, you will be less of a resource for others.
Check out our section on self-care for easy and realistic ways to take care of yourself. These self-care suggestions aren't just for grievers, despite what some of the titles suggest.
Emotional Considerations in Caregiving:
Positive Feelings:
Caregiving can provide the caregiver with many positive feelings, including but (obviously) not limited to:
Fulfillment: The act of taking care of another human being can be a humbling but fulfilling opportunity. Occupying such a necessary and rewarding role can provide the caregiver with a sense of meaning and purpose.
The Gift of Time: In some cases (but not all), being someone’s caregiver provides you with the opportunity to bond and spend time with the individual. This can be especially meaningful when caring for someone who is terminally ill. The caregiver will often reflect upon this time period as stressful but invaluable.
Repaying Our Elders: For those who take care of the parents, grandparents, etc. who nurtured them as children, caregiving can provide on opportunity to give back to those who raised us.
Negative Emotions:
If you feel stressed out, anxious, resentful, or worried about the task of caregiving, don't feel guilty. You are not alone. Many people experience a range of negative feelings at one point or another while in the role of caregiver. These feelings might be felt towards...
...themselves
...the family member
...God
...life
...healthcare professionals
...the disease or injury
...and unhelpful or imposing family and friends
I personally think it’s important to note caregiving does not come naturally to everyone. Some people are born nurturers; if you’ve ever had a great nurse you know what I’m talking about. But for some people, caregiving is a completely foreign and uncomfortable job. I think as capable humans, we often feel like we ought to be able to do certain things. Specifically, the able bodied and healthy ought to be able to take care of someone else's physical well being... but this isn't necessarily true. There's a reason why nurses go to school for years upon years. All this to say: Go easy on yourself because it's normal to feel overwhelmed.
Here’s a list of totally normal negative feelings associated with caregiving:
Resentment:
...for having to sacrifice your life to take care of your loved one
...towards your loved one's needs
...towards other friends and family who get to go on with their lives
...towards the illness/disease/injury
...at the situation
...at the illness/disease/injury
...at God
...at an uncooperative patient
...at everyone
Guilt:
...for not wanting to be a caregiver
...for not doing a good enough job
...for allowing yourself to take a break once in a while
...for being healthy when your loved one is not
Anxiety:
...about your loved one's health
...about not being there when your loved one needs you
...about not knowing what to do or doing something wrong
Fear:
...of the disease
...of the future
...of making a mistake
...of your loved one dying
...of harming your loved one
Helplessness:
...because you wish you could do more
...because you can't control everything
...because you can't relieve your loved one's pain
...because you aren’t sure how to help
...because you aren’t sure if you're doing the right things
Grief:
...over your loved one's impending death (in the case of terminal illness)
...over hopes and dreams for the future
Secondary Stressors:
As mentioned above, when you’re a caregiver, other priorities quickly fall down on the list. We have only so much to give and, if your time and attention are primarily focused on your role as caregiver, other aspects of your life may begin to suffer such as:
- Work
- Family
- Marriage
- Friends
- School
- Financial Security
- Personal Health
Finding balance is a struggle for anyone with any combination of the commitments and responsibilities listed above. Adding your role as caregiver can tip the scales. There is no way anyone could do it all. Hopefully the people in your life have an understanding and appreciation for your situation, but try not to completely resent or ignore them if they do make demands on your time and attention. Chances are they just care about you and love you. That's all I can really say about that because the key to finding equilibrium depends on your unique situation, responsibilities and support system.
Finding Support
Being a caregiver can be extremely difficult if you have limited resources, time, or support. In fact, you may find yourself making some pretty serious decisions and tradeoffs. Do what you can to find out what services, support, and tools are available to you, be open to asking for and accepting help, and always find time to take care of yourself.
Now that we've laid some groundwork, I'm going to hand you off to some other great sites. Hopefully these sites contain the support and information you need. Additionally, we welcome any and all feedback from our readers. Many of you have been through this and, frankly, probably know more than I do. I know what I don’t know folks; but one thing I do know is that the WYG community is super supportive and knowledgable.
Caregiving.org (National Alliance for Caregiving)
Supporting a Caregiver:
If you know someone in a caregiving role, consider offering your support in any way you can but be tactful and try not to intrude. When someone is seriously ill or dying, sometimes it seems like everyone they’ve ever known all of a sudden wants to come calling. This can be exhausting and overwhelming for the sick person and their family. Some patients and caregivers may love the company, but others might not. Hopefully you know which category your sick loved one falls in, but if you're not sure then ask. Also, check in to find out what time of day is best for visits for both the patient and the caregiver. As with every person and every family, there are good and bad times to hang around. Use your instincts and, when you aren’t sure, just ask. Here are a few general examples of ways to support a caregiver...
...offer to sit with their loved one while they take a break
...if they won’t leave their loved one, ask if you can come over and keep them company
...if you have a bored teenager, offer their services to mow the lawn or babysit children
...next time you are going to the store, ask if you can pick them up a few things
...cook them dinner
We hope to have offered some useful support for caregivers. If you have anything to add to our discussion, please comment below. Also, don't forget to subscribe to receive posts straight to your email inbox.
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Sue November 20, 2023 at 10:19 am
Think of how you might want to be supported in this situation and do that for your friend, doing small things are sometimes the most appreciated. I have been driving for over 2 years to be a caregiver for my parents and the small things others do like coming to help them or bringing food to lessen my load is great relief and help to me it just offer to listen.
I hope this helps
Sasha August 5, 2014 at 5:28 pm
Hi. I’m looking for information / advice on a bit of a different situation but can’t find what I need anywhere. Was hoping you could help or point me in the right direction. This is the situation…. Three months ago a friend of mine’s 7 year old son died unexpectedly from a freak/fluke accident. My friend is a solo mother with no other children. Her whole purpose for living is gone. But it’s not her that I’m writing about. Another friend has become the main support person in our grieving friends life. The supporting friend has her own family to consider and her own health and needs. She is more than willing to be the support person but naturally feels very weighed down by the responsibility of it all. The grieving friend isn’t keen to let others of us help her in the same way as the support friend. (I hope this us making sense!) Anyway I’m worried about my friend in the support role. How can we help her? How can she help our grieving friend but still maintain a healthy relationship with her own young family? What does she say to our grieving friend to let her know she’s there to help but sometimes she needs to share the load? Our grieving friend is now receiving counselling and I’m hoping this might also lift the pressure on our supporting friend. I welcome any tips or advice that anyone can give. Thank you in advance and I’m sorry if this has ended up in the wrong place. Kind regards
Supporting the support person
Catherine May 16, 2014 at 5:39 pm
I am so happy I have found you. For the past few weeks your blogs have been exactly what I have needed, and today’s was no exception. I wanted to ask you a question about “after caregiving”… I spent 4 months with my mother, three years ago, as she fought her last battle with COPD…and ultimately lost. I took a leave of absence from work, left my husband alone in another city, and basically turned over my life to be at my mother’s side. I wouldn’t change a thing, I never felt resentful, I felt honored, and would do it all again. She was in and out of the hospital, home, long-term care, back to the hospital…and ultimately back home with hospice. This was three years ago, and I am 57 years old, and yet, I still have not resumed life as normal, I am still grieving…and yesterday I started to wonder if possibly there is a PTSD related to the sudden halting of your life as you know it…to giving 100% to caring for someone you love (your favorite person in the whole world)…having them pass and losing them AND the joy of taking care of them. I wonder about everyone else moving on with life, and doing much better then I am…and began wondering if I have not faced a PTSD from the loss of mother and the actual loss of the caregiving? If you have ever written an article on this, I would love to read it…I don’t know how to check your archives…. Thank you again for all of your beautiful blogs…they have been so helpful. Catherine
Kelly January 11, 2023 at 2:12 pm
I know this is an old comment but if you ever found any resources on this could you please let me know? I am in this same situation and feel so lost
Jennifer May 16, 2014 at 11:04 am
My friend Karin is hosting an online workshop for caregivers as part of her PhD dissertation. The story making/ story telling workshop is called Using Applied Mythology to Enhance the Well Being of Caregivers… which sounds complicated, but the gist of it is that she will look at ways that listening to stories, journalling, and sharing stories can help caregivers. More info here: https://mythologicalcaregiving.com/about.html
noelle May 16, 2014 at 7:23 am
My husband died recently and suddenly and unexpectedly, but he was deaf and blind. A good deal of our relationship with other people involved me interpreting for him or being his proxy. I was his driver, his nurse and,as he called it,his seeing eye wife. I truly feel like someone whose career was outsourced and I have to find a whole new occupation, even though I’ve had the same occupation and was the primary source of income for our entire marriage. I feel like I’ve list half my limbs and most of my purpose. I’m still trying to figure out what my new purpose is.
Bob May 15, 2014 at 9:26 pm
I cared for a loved one with dementia for five years before she died. The positive feeling of fulfillment that I got from caring for her was very important for me, especially since my career was going down the tubes simultaneously (for me, these were independent events, but many caregivers have to leave their jobs or put their careers on hold when caregiving becomes a 24/7 job). While this feeling of fulfillment helped to sustain my spirits while I was caregiving, after my loved one died I was doubly miserable. Not only was I grieving her loss, but I had lost the sense of fulfillment that I got from caring for her. Taking care of someone with progressive dementia has been compared to caring for an infant. These caregiving roles are very different because of the trajectories: when caring for an infant you know that they will grow progressively more able to care for themselves and your role will diminish (you’ll be getting more sleep!) whereas the opposite is true when caring for someone with progressive dementia. It left me fighting a feeling of pessimism and hopelessness.
Marty Tousley (@GriefHealing) May 15, 2014 at 9:15 am
Excellent suggestions, Eleanor ~ thank you!
You’ve asked for additional recommendations, and these are some that I like:
Alzheimer’s Reading Room, https://www.alzheimersreadingroom.com/
CareGiving Cafe, https://www.caregivingcafe.com/blog/
Caring with Confidence, https://careconfidently.com/
The CareGiver Partnership, https://blog.caregiverpartnership.com/
The Intentional Caregiver, https://www.intentionalcaregiver.com/
The New Old Age, https://newoldage.blogs.nytimes.com/
The Unprepared Caregiver, https://www.unpreparedcaregiver.com/