I spent several years working in Palliative care in a nursing home setting and am fully aware that caregiver burnout is real which is why understanding the treatment of caregiver burnout is so important.
Prevention is always best but knowing what to do if you recognize symptoms of caregiver burnout is important.
Since our grandson was diagnosed with type 1 diabetes in June 2019 I have been doing my best to help with Alex`s care in the hopes of giving my daughter the support she needs to hopefully avoid her getting caregiver burnout.
After all, as the mother of a type 1 diabetic, she gets little to no reprieve. Even when he is with me she is texting me asking for his numbers. Not much of a break but she is getting better at trusting my judgement and abilities in managing Alex`s diabetes.
In fact, we had Alex and his sisters for a sleepover on Friday night so his parents could have a worry-free date night. I know they appreciated it even if she wanted his numbers texted to her all evening.
Table of Contents
What is a caregiver
What is a caregiver?
Simply put, a caregiver is a person that helps another person with their medical and personal needs.
Unlike medical professionals, they are often family or a close friend or relative of the person they are caring for and are not always financially compensated for the work they are doing and the disruption this role places on their life.
The person being cared for is often a family member or friend who is chronically ill, has a disabling condition or is an older adult who can no longer care for themselves.
A caregiver`s duties may include:
- preparing meals
- running errands
- bathing
- performing medical tasks, setting up tube feedings, administering oxygen, giving medications, managing diabetes
Our daughter and son-in-law are Alex`s primary caregivers, when he is visiting us I take on the role of primary caregiver and when he is at school his TA(teacher`s assistant) is his caregiver.
What is caregiver burnout?
Being a caregiver is both time-consuming and as well as physically and mentally exhausting. As a caregiver, you are often making some pretty serious decisions on behalf of the person you are caring for.
With a type 1 diabetic, you literally have their life in your hands.
What do I mean?
Well, if I give Alex too much insulin his blood glucose levels will drop too low risking diabetic coma.
If I don`t give him enough insulin his blood glucose levels will remain too high.
High blood glucose over an extended period of time can result in diabetic ketoacidosis (DKA) which is a serious, life-threatening complication of type 1 diabetes.
It is those types of decisions several times a day that make being a caregiver so stressful.
Let`s take a closer look at caregiver stress and caregiver burnout so we can understand the difference.
What causes caregiver burnout
Caring for a loved one can be very rewarding but it is also very stressful.
Because caregiving is often a long-term challenge the emotional impact can snowball over time.
I know that with our grandson’s diabetes it can be very challenging when we do our best to manage his blood glucose level but they insist on remaining too high.
It can feel overwhelming at times, it can sometimes feel like diabetes is kicking your butts, but you know you can`t quit or give up, you just have to keep trying.
The knowledge that there is no cure and that this struggle will go on for all of Alex`s life, and since he is only 6-years-old, hopefully, a very long time can feel so frustrating.
It is important to realize that if the stress of caregiving is left unchecked it can take a toll on your health, relationships and your own mental health leading to the state of emotional, mental and physical exhaustion that is called burnout.
If you get to that point both you and the person you are caring for will suffer.
When you are a caregiver, self-care is not a luxury, it is a necessity.
You need to find ways to nourish your own emotional and physical well-being.
Caring for yourself is equally important as caring for your loved one.
Signs and symptoms
Being aware of the warning signs before they reach full-fledged burnout can enable you to take the necessary measures to prevent the stress from building further and even relieving that stress.
General warning signs may include:
- anxiety
- avoiding people
- depression
- exhaustion
- feeling like you are losing control of your life
- irritability
- lack of energy
- losing interest in things you normally like
- neglecting your own health needs
When burnout does occur it can have a profound effect on your physical health:
- body aches and pains
- fatigue
- frequent headaches
- increased or decreased appetite which may result in weight gain or loss
- insomnia
- weakened immune system
The emotional effects can be more subtle and more difficult to recognize:
- anxiety
- becoming argumentative or angry
- easily and frequently irritated
- constant worry
- depression
- sense of hopelessness
- impatience
- inability to concentrate
- isolating yourself mentally and physically
- lost interest in favourite hobbies or activities
- lack of motivation
The sudden development of negative behaviours such as quickly losing your temper or neglecting your caregiver duties is another indicator of burnout.
If left unchecked and burnout progresses, depression and anxiety will undoubtedly increase. The caregiver may use alcohol or drugs in an effort to relieve the symptoms. This may lead to impairment risking the health and safety of both themselves and the person they are caring for.
Prevention
The biggest factor in preventing caregiver burnout is to ensure you take care of yourself.
Self-care is not only essential for maintaining your own good physical and mental health but also helps you provide excellent care for your loved one.
Self-care essentials
There are simple things you can do each day to ensure you are maintaining your physical, mental and emotional well-being. Be sure you take time for yourself each day.
Read a book or write
Do you love to escape into the fantasy world of a great book?
I do and it can leave me feeling refreshed as though I have taken a mini-vacation.
Find an author or genre of book that you enjoy and give yourself some time each day to slip into another world between the pages.
I like to change the authors or genres I read from time to time for a nice change of pace.
A lot of you know I love to write.
I start every day by writing in my gratitude journal which puts me in a great frame of mind to tackle whatever the day brings my way.
I am also a blogger and so I love to spend time each day researching/ writing blog posts. I find them so satisfying and the process for me is so relaxing to just sit and let the fingers type away.
For me, the editing is more stressful and not as enjoyable as just letting the thoughts flow through the keyboard and onto the screen.
Do you like to write?
If blogging is something that interests you then check out the FREE training that got me started.
Prioritize your relationships
It is important you don`t neglect the rest of your family and friends. They will sustain you, keeping you happy and hopeful. Spending time with your spouse or other children is essential not only for your well-being but theirs as well. Take the time to enjoy time nurturing your other relationships.
Get out of the house
Getting out of the house is essential. Go for coffee with a friend or go see a movie with your spouse.
Staying cooped up in the house is only a recipe for disaster.
If the person you are caring for is able why not take them outside for walks or go for a country drive. It is amazing what a change of scenery can do to help you feel refreshed and you have a renewed sense of well-being.
We love taking our grandson on adventures. Playing soccer with him in the yard is always fun and often the whole family will join in.
Another great joy is taking the grandkids for sailing adventures during the summer and we all enjoy that.
Eat healthily
This one is easy for us because a big part of managing Alex`s diabetes is feeding him a healthy, well-balanced diet.
It doesn’t mean we never eat the treats, it just means they are just that, treats that we indulge in only occasionally and in small amounts.
It just makes sense that we all eat the same good food.
Be sure your healthy diet includes a variety of fresh fruit and vegetables.
Limit the consumption of sugary snacks or drinks.
Get regular exercise
We try to get outside every day for a walk or bicycle ride.
Try for a minimum of 30 minutes a day. We often head out for at least an hour.
When we have Alex here we head out to the trails for adventures.
Set personal health goals
I try to set personal goals such as maintaining a certain goal, eating healthily and getting an adequate amount of sleep each night.
Try to establish regular routines to make this easier such as:
- going to bed at the same time each night
- getting up at the same time each day
- eating regular meals and snacks
- setting a daily exercise routine
See your doctor
Be sure to get your annual physical exam to ensure you are in optimal health and are not battling health challenges of your own.
It is difficult to care for another if your own health is compromised.
Accept help
Often friends or family members will offer to help. This makes it a good idea to be prepared with a list of ways others can help you and let the helper choose what they would like to do for you.
They may be able to run an errand, pick up your groceries, or cook a meal for you.
Accept the help graciously and enjoy that one task that was ticked off your list without you having to do it.
Focus on what you can provide
It is normal to feel like you aren`t making any difference and feel guilty sometimes.
Remember there is no such thing as a `perfect caregiver.`
Realize you are doing your best and that is all anyone can do.
I know that sometimes when I have Alex I feel like I am failing him if his blood sugars don`t respond to his insulin the way they should or he drops too low. I feel guilty that I may have given him too much insulin even though I never give it without the ok from my daughter.
The hardest part of diabetes is that it is so unpredictable. What worked yesterday may not work today and that is nobody`s fault, that is just the nature of diabetes.
Set realistic goals
My daughter struggles with this one. After every visit with Alex`s diabetes team, she is so full of big goals of getting his A1c levels lower by the next visit in three months.
While I applauded her determination and optimism I worry that she is setting herself up for failure.
After all, she can only do her part to manage his blood sugar levels but his body has to respond to that treatment and she has no control over that.
Many times his managing his diabetes takes so much time that I will take a cooked supper over for her and her family or I will bring the girls up here so she doesn`t have to worry about them.
Other times like Friday, I take all the kids and give them a whole night diabetes-free, and I take on the caregiver role.
Get connected
Many communities have resources in place to assist caregivers such as transportation, meal delivery or housekeeping.
Learn what is available in your area and take advantage of it.
There may even be classes to help you learn more ways of dealing with the disease your loved one has.
When my mother had Alzheimer`s disease we took classes to learn effective ways of dealing with dementia patients as the disease took a tighter grip on her.
It helped so much not only in understanding what was happening with her and how to deal with it but also in meeting other people facing the same challenges.
Join a support group
In a nearby community, there is a support group for parents of type 1 diabetics that my daughter and son-in-law joined.
They have found it to be a huge blessing.
Our daughter and son-in-law have met other parents facing the same challenges and Alex got to meet some other type 1 kids’ so he doesn`t feel so alone in his disease.
Some great friendships were developed through joining a local support group.
Final thoughts
Within this article, we have learned not only what is caregiver burnout but also about the treatment of caregiver burnout.
We have learned that self-care is not a luxury it is essential especially if you are a caregiver.
It is important that we take the time to nurture our other relationships and draw strength from family and friends.
Many communities offer resources that can be valuable assistance and a source of information.
Joining a local support group can be a big help and offer the support of others who are on the same journey. Who knows maybe you can even meet new friends which is always a great benefit.
Learn to accept help when it is offered and be sure to take time each day for yourself. Nurture your own mental, emotional and physical health.
I am not in any way a medical practitioner, please do not rely on the information on our website as an alternative to medical advice from your doctor or another healthcare provider. We only share our experiences. We are affiliates, this means that if you purchase something from a link or ad on this site we may receive a small commission. This in no way affects the price you pay.
Are you a caregiver?
What helps ease the stress for you?
How do you exercise self-care?
Share your experiences and tips in the comment section below and remember to check out that FREE training about blogging. It really does teach you all you need to know to be successful online.
Your introduction had me thinking how blessed your family is to have you, and I am sure you are appreciated. Do know that in CyberWorld you are appreciated too. I do look forward to seeing how you are coping with Alex, especially since I am Type 2 and a lot of your experiences are applicable.
I do relate to the calls for numbers. My father is blind and diabetic. We live in different parishes, but being diabetic myself, I have assumed the role of “remote caregiver.” I call every day for the numbers and when necessary make adjustments to his diet.
I monitor what he eats as often as I can. Note, I am not physically with him and yet at times I feel a bit anxious, especially when the numbers are not good and the correct foods are not given to prevent a bigger spike.
Deborah, it is so true that when caregivers fail to take care of themselves, they can become ill. I have witnessed that before and the caregiver died leaving the person they were caring for.
I love your suggestions to prevent burnout. Thanks for an informative article and continued success with Alex.
Thank you so much for the kind words Josephine, they really do mean the world to me.
I am sorry to hear your father is both blind and a diabetic. Did he lose his sight as a result of diabetes? He is fortunate to have such a caring daughter looking out for him especially when you are managing your own diabetes. I am all too well aware of how time-consuming managing diabetes can be. I commend you for your efforts.
Be sure to take time to do things you love. Even during these trying times, you can find things to do that relax and calm you. A bubble bath with a cup of herbal tea and a good book sounds heavenly to me but you must find what works for you.
Taking care of yourself is extremely important for all of us but more so in your case. You are managing 2 people’s diabetes, your own and your father’s. I realize you said you are doing it remotely but that doesn’t change the worry and stress that goes with being a caregiver. It may even be worse because you are not there to actually see how he is doing with those wonky numbers.
I know with Alex, the numbers only tell part of the story. He may be only slightly low but he is not really behaving like himself which could indicate the CGM not reading correctly so a finger poke would be in order.
Thanks for dropping by and please be sure to take time for yourself.
You are welcome and thanks, Deb. No, daddy lost his sight due to cataracts. He has accepted and he is coping now. Thanks for asking. It was a pleasure to spend physical time with him recently for his birthday. I cherished every second.
Yes, I do take time away from my jobs and diabetes to enjoy myself and to relax. Covid has forced us to get more creative as we spend the bulk of our time indoors. I have certainly risen to the occasion.
Continued success.
Thanks for returning to answer my question, Josephine.
While I am sorry your father has lost his sight I am grateful that it was not diabetes-related. That must also be a relief for you as well. So many do lose their sight to diabetic retinopathy when it could be prevented by properly managing their blood sugars.
I am really glad to hear you take some time for yourself to relax and find ways to enjoy yourself. I agree COVID has forced us all to more creative in ways to keep in contact with friends and family. We use Skype or video chat through Messenger. They seem to work well for us and it is nice to see the grandkids that we can’t visit. Of course, phone calls work too but there’s something special about seeing who you are talking to.
I have found I also needed to get creative with my exercise as well. Thankfully we have internet and it is full of workout videos of various types. Most people should be able to find something that works for them.
Thanks again and take care.
Hey Deb, great tips here (as usual, I might add 🙂 ). Not wanting to criticize your daughter but it seems to me it is really difficult for her to hand over responsibility? I can imagine you are worrying she will get a caregiver burnout!
I have been a caregiver for my parents for 20 years. Both had a form of dementia at the end of their lives, Alzheimer’s in my father’s case and vascular dementia in my mother’s case. And since my brother and sister had taken their hands of our parents, I had to do it on my own.
I knew the risks of burnout all too well from my own experience. We all learn best from our own experiences, don’t we? Well, most of the time anyway. So, because I also had had burnout when I was much younger because of stress at my work, I knew the signs and took a step back at times during the caregiving in order to prevent worse. Even though that was really hard to do because it kept feeling as abandoning.
And when my parents were still both alive, I watched out for my mother as well and took her on short holidays to literally give her a break. The Netherlands is very good in that regard, offering short-term guided accommodation for people with dementia.
Great article, Deb, and I hope people will try to follow your tips as they are really good.
Thanks for dropping by Hannie I do appreciate hearing from you.
You are correct, my daughter does have trouble letting go of responsibility and I must say she is improving greatly over last year. During this sleepover, I texted her his mealtime numbers to verify the math on giving his injections. Then at bedtime, he was running a little high but I figured since he would not be eating overnight he would be okay. His numbers didn’t come down, in fact, they went higher so I texted her his numbers and she suggested a finger poke because the CGM does have a delay. He was higher again. She suggested a bolus injection of insulin to get him closer to the target range. I gave the shot and within 15 minutes all was good again. I did not text her the numbers all night as I did last summer which I think is a big improvement.
I commend you for being a caregiver to your parents. That is a difficult job. I was not the caregiver for my parents as they lived on the other side of the country from me so distance was very much an issue. I did however work many years in a nursing home with Alzheimer’s and dementia patients as well as a LOT of palliative care and I know it isn’t easy. It is much more difficult to be a caregiver for your own family because of the sense of guilt you feel when you take much-needed breaks.
Many communities offer programs that can give caregivers that break they so urgently need and deserve. I know here in Federicton they have a senior’s daycare where you can drop off your parent and they will be well cared for while you go take care of yourself for a change. Of course, they had several nurses on staff at all times. While I never used it personally, I think it is a fantastic idea and hope other communities develop a similar program.
That travel program you mentioned in the Netherlands sounds amazing. What a wonderful service to offer.
Thanks again Hannie and be sure to take care of yourself.
This is just a great blog post. Thank you for that, Deborah. I feel like in every line you wrote there is wisdom hidden 😉 I can not agree more that burnout is very easy to experience, in fact, to prevent it from happening, it is nothing but everyday balanced life. I love your suggestions, like spending more time with the rest of the family or read a good book.( I just finished my short Eastern getaway where I read a lot, but finding it quite hard to find quality time to read during my everyday life, do you have a suggestion for that). I think not just caregivers(even their job is filled with a lot of responsibilities, no doubt about that) but almost in every job, there is a chance of burnout. So all of us, have to take care of our mental state to be sure we live as balanced as possible. Even though it is not always easy, we have to do our best in order to find, inner peace. I think, one piece of advice from me would be, to spend as much time as possible doing one’s passion.If that possible within the day job, that’s ideal, but even if not, TWO HOURS OF PASSION every day can help live a balanced life. Great article.
Thanks for dropping Julius and for the great compliments. It really inspires me to keep writing and sharing our experiences.
I agree burnout can be experienced by anyone. I specifically targeted caregiver burnout because people like my daughter are spending copious amounts of time caring for a family member or friend, without financial reward (it is not their job).
They are taking on this role simply because they love the person and will do anything to help them. Often, they are doing as well as a job or instead of a job as is my daughter’s case.
When Alex was diagnosed they decided she would give up working outside the home so one parent would always be available for Alex, you never know when he would need to be picked up from school because his sugars are so wonky (high or low) that the school is uncomfortable with treating him.
My daughter takes managing Alex’s diabetes seriously and when his body does not respond to the treatment she takes it hard. I worry her more than Alex at times.
It is so important to carve out time for yourself each day. I have found that I need to schedule everything or it just won’t happen. For example, I really enjoy a cup of tea after lunch each day. So while I am drinking that tea I take some time to read. It is amazing what a half-hour in a good book can do for you. Then I return to my home office feeling refreshed and ready to get back at it.
So my advice to you would decide what time of day you would like to read. Determine how long you want to read. Then schedule it into your day.
Be sure to keep that date with yourself. If an emergency pops up reschedule your self-time for later in the day but be certain it truly is an emergency.
In my case, other than Alex’s school calling me to pick him up (if they can’t reach his parents)nothing stops me from reading.
This time of self-care is so important, especially since I spend 12+ hours a day in front of a computer serving others. Between writing blog posts and servicing customers through our online store I am non-stop. Any downtime is usually spent catching up on household chores.
I do hope this helps you. Please let me know how scheduling reading into your day works out for you. Take care, Julius.