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We have someone to clean our house, gardeners, delivery of our groceries, a home care nurse and rides for my hubbie's dialysis and other medical appointments. So why do I have caregiver's burnout?
There are two big bad negative things that affect caregivers. Burnout is one and secondary traumatic stress is the other.
Burnout is overwhelm due to work burdens. Secondary traumatic stress is when you are exposed to suffering and it causes you to suffer.
Burnout: I have too many chickens to feed, I've been so busy I haven't slept in two days.
Secondary traumatic stress: The chicken died in my arms with its guts hanging out, after seeing that I haven't slept in two days.
In my chicken example, the cause may seem similar, as the caregiver has a lot of chickens and chicken-related things happen. The effect is similar, as it is lack of sleep. But the thing that is affecting the caregiver is burnout in one case and secondary traumatic stress in the other case. The "cure" is also different. Burnout can be managed with a vacation and workload shifting. ...Being traumatized requires a good trauma counsellor and changing your exposure to the source of trauma. Trauma can even become PTSD from being exposed to another's suffering. The trauma can be really bad if you have close emotional attachment to the person who is suffering.
Sometime the secondary traumatic stress is called compassion fatigue but that language may be used imprecisely online.
While the Caregiver Forum is filled with tips, advice and support, it may also contain abbreviations and acronyms that may be unfamiliar to some readers. We have compiled a list of both professional and colloquial abbreviations commonly used on AgingCare.
It could be anything from meeting a friend for coffee every week, or taking an exercise or yoga class, getting a massage, taking a dog for a walk, going on a day trip, taking yourself out for lunch, getting a manicure, visiting a library or bookstore or museum...
You get the idea. Anything fun or soothing that speaks to you and is appealing.
If you do feel burnout then start seeing a therapist to have someone to vent to and to.
It occurs to me that maybe what you are summarizing as ‘caregiver burnout” could be a form of depression?
Your entire life changed with no promise to return to normality as a result of your husband’s illness. All you had pictured as what would be your life together has drastically shifted and you’ve had to quickly adjust and give up a lot.
All that is enough to make someone feel at the very least sad, tired, and even angry at the reality that came to life. The routine you had to adjust to is far from pleasant nor easy, so in my opinion it is more than understandable what you feel.
I have always thought that the biggest challenge of a caregiver is not the physical aspect of the process (helping with basic needs, transportation, etc). Instead, the hardest part is what goes on internally, the loss of the human being we love -I don’t mean physical loss, just the loss of who our LO (loved one) used to be before the illness-, the sudden transformation of our present and future life, and the sense of loneliness that I think all caregivers experience.
You are really the person who can best identify what could help you. I would say at least take advantage of the help you already have and use that little bit of freedom to invest in YOU. Think of what would excite you, new projects, new or old hobbies brought back to life, relaxing time for you and even plan some down time doing something fun with your hubby, something he can do. That, I would hope could bring back some joy and help you get rid of the tiredness and sadness you feel, substituting it with something that fulfills you.
The caregiving path is never easy, never Dawn. And we are really entitled to feel whatever we feel. This journey teaches us to be patient and kind not only with who we care for, but with ourselves. We learn to forgive others, and ourselves!
It is very important to realize when we are reaching a yellow or red zone, to know we need to stop and change our routine in a way we bring some peace and hope back in our lives. This might be your yellow light, don’t ignore it!
There is a way to get your mind back! Lol. Takes a lot of work, but it can happen. Apologies I can't tell you how to do it for you. But to be there for someone else, you have to be ok yourself first. Have heard that for years, and probably told other people that too, actually. I feel silly for saying that because I did not do that myself for the longest time. But it is possible. Unbelievable as it may seem at any given most difficult of moments!
Maybe stop asking why and just go with how you feel? This journey is overwhelming. In different ways for everyone. And it just is what it is. I say try not to blame yourself for the way you feel. And do whatever you can to alleviate it in the best way you can. It's like something that's always on your mind, follows you around everywhere. EVERYWHERE. So hard to focus on anything else because you just want to do what's best for them. And who the heck knows what that even is sometimes. I wish you well. Sounds contrite, but try to take care of you.
You feel burned out for the same reasons I did: no matter how well you prepare or how much help you have it's still there front and center 24/7/365 and on top of that you do it knowing that when it ends it's going to almost certainly be on a sad note that going to lay even more emotional baggage on you. It's like perpetual dread and squelching that dread and going through the motions for the sake of your loved one takes a lot out of you. Now I don't want to paint all caretakers and martyrs or anything but sometimes being unselfish is really, really hard.
I put in nearly three full years taking care of my mother. She passed away six months ago and I'm only now starting to feel more like my old self again. All kinds of people have told me what I "should" be doing and how I "must" feel but it's all unique to the individual and the situation. My point being that in spite of having the wherewithal regarding help and etc. your feelings of being burned out are just as valid as anyone's are.
Oh no -- of course you can have burnout, even with help. You're thinking about his care from the moment you open your eyes. It's emotionally exhausting. You're assessing and adjusting all the time. Also, in addition to all the medical related tasks, you're probably also doing many of the routine tasks your husband used to do - filling your plate further. Be kind to yourself - take time throughout your day for small recharges.
Dawn, part of it is Because people are in and out of your home every single day, and it takes it's toll on you. You are never alone to collect your thoughts, and are Always on call for everyone else in your life, and there is Never a break. You are constantly inventoring all of the care needed, the homes needs, food, shopping, med and health supplies, the bills, and trying to appear that you have it all together and it's exhausting!
I pray that you are able to arrange some ME TIME, just to get a break here and there several times a week, just so that you can turn off your brain, and enjoy life once and a while.
Care giving is hard work, even if you have a lot of help. We took care of my FIL in our home for 13 years, but it was the last 9 weeks of his life on Hospice Care until he passed away, that was the hardest by far, both emotionally and physically. There was Hospice help in many times during the week, and We felt We had to have the house clean at all times, him clean, fed, medicated, and ready to accept the medical care and visitors, even if We hadn't had a good night's rest, and we were exhausted all the time, and we could never leave the house together at the same time, so it was super difficult, despite the great care we/he received from Hospice, which we greatly appreciated!
Rremember, this is but a season in your life, things will change eventually, and then we need to adjust to the next season, your new normal, no matter how difficult or joyous. Just remember to take care of you in all of THIS! God Bless You!
HI Dawn, I bet your every thought has your husband and/or his needs and/or a service provider included in it. You can't shut it off, it consumes every single thought in one form or another.
This is what burns me out, never being able to stop it in my head.
Even though you have help in place you are still in control and that means it all sits squarely on your shoulders.
Find a way to escape mentally from the entire situation, whether a hot soak, a good book, a talk with a friend or a walk, whatever you enjoy and can be submerged in. You need to take care of you on this journey.
The physical aspect is usually the easiest part to deal with. As you are seeing first hand.
Hugs 2 u and come here to vent, rant, rave, question whatever you need. Lots of good people here willing to help you get it out. There are even some good scraps that take place, no one will hold anything against you. You are in a tough position and I believe everyone wants to help others feel stronger and more stable on this sorrowful journey.
May God grant you strength today and all the days you are on this path.
One thing; don’t compare what your life is like, or what you are going through with anyone else’s situation even and especially posters on this site. People who post here are venting to strangers, people they will never meet, and write down everything that pops into their brain. There are no hard and fast rules for feeling burned out, depressed or overwhelmed. No one of us has any more right to feel burned out than anyone else. Each situation and every poster is unique unto themselves.
The worst thing you can do is sit around and ruminate about what’s going on. I am not the sort of person who volunteers, goes to coffee shops, walks in the park, etc. So, I read, knit and craft, athome where I’m still available for my husband but also on my own personal getaway.
You have have every right to feel any way you want.
Agree with others here who suggest what you are feeling may be the emotional toll. It is intangible so it's difficult to put your finger on. I feel it too and honestly have been a bit embarrassed because I stopped doing much of the heavy lifting for my parents several months ago. I give you huge kudos for being proactive and arranging others to do what is needed around the house, transportation, and grocery delivery. That will lift some of the weight off you as well as others in your life (any kids, friends, relatives) who otherwise may feel the need to step in and the eventual chaos it would bring if left untended to. I think what you've done is great and I wish more people would do what you are doing. I wonder if perhaps just doing small things that you like such as getting outside, taking walks, any hobby like needlepoint or reading may give you a mental break on occasion. It is easy to abandon those things when we are full time caregivers.
I would venture to say your burnout is emotionally related. I feel that way with my mother who is in AL. Her needs can overwhelm me at times. I feel this way greatly because she neglected her health for years and I run around to doctors for her due to what my husband and I called deferred maintenance. She is also very overweight which exacerbates all issues. Finding clothes for her is exhausting. Frankly we are amazed she has made it to 88. On top of that her doctor recently told me she may be heading towards Alzheimer's. That confused me because I though that was a definite diagnosis yet he left it as a possibility depending on her aging. We don't share many beliefs. She was not the mother I wished for growing up so all those feelings come into the scenario. I can feel guilt at times yet I know I do all for her I can and always attempt to meet her needs. But it is an emotional burden. I have a husband with health issues and grandchildren in different states. We do visit them when we can. But at times I feel tethered to a ball and chain. I know I don't have it anywhere near as bad as so many on this site yet I can't totally displace my emotions. Eventually her money will run out and we will have to deal with all that entails
Because you are carrying responsibility for all of this 24/7 with no let-up, and because your life is just as affected by your husband's ill health as his is. It is a constant strain. Why do you think you should be shrugging it all off with a merry laugh?
Counting your blessings is a good thing, and you obviously do that. But it is equally important to acknowledge adversity and be kind to yourself for minding it.
Full marks for delegation, too. But what about actual respite, r&r for yourself? Do you get any?
By proceeding, I agree that I understand the following disclosures:
I. How We Work in Washington.
Based on your preferences, we provide you with information about one or more of our contracted senior living providers ("Participating Communities") and provide your Senior Living Care Information to Participating Communities. The Participating Communities may contact you directly regarding their services.
APFM does not endorse or recommend any provider. It is your sole responsibility to select the appropriate care for yourself or your loved one. We work with both you and the Participating Communities in your search. We do not permit our Advisors to have an ownership interest in Participating Communities.
II. How We Are Paid.
We do not charge you any fee – we are paid by the Participating Communities. Some Participating Communities pay us a percentage of the first month's standard rate for the rent and care services you select. We invoice these fees after the senior moves in.
III. When We Tour.
APFM tours certain Participating Communities in Washington (typically more in metropolitan areas than in rural areas.) During the 12 month period prior to December 31, 2017, we toured 86.2% of Participating Communities with capacity for 20 or more residents.
IV. No Obligation or Commitment.
You have no obligation to use or to continue to use our services. Because you pay no fee to us, you will never need to ask for a refund.
V. Complaints.
Please contact our Family Feedback Line at (866) 584-7340 or ConsumerFeedback@aplaceformom.com to report any complaint. Consumers have many avenues to address a dispute with any referral service company, including the right to file a complaint with the Attorney General's office at: Consumer Protection Division, 800 5th Avenue, Ste. 2000, Seattle, 98104 or 800-551-4636.
VI. No Waiver of Your Rights.
APFM does not (and may not) require or even ask consumers seeking senior housing or care services in Washington State to sign waivers of liability for losses of personal property or injury or to sign waivers of any rights established under law.
I agree that:
A.
I authorize A Place For Mom ("APFM") to collect certain personal and contact detail information, as well as relevant health care information about me or from me about the senior family member or relative I am assisting ("Senior Living Care Information").
B.
APFM may provide information to me electronically. My electronic signature on agreements and documents has the same effect as if I signed them in ink.
C.
APFM may send all communications to me electronically via e-mail or by access to an APFM web site.
D.
If I want a paper copy, I can print a copy of the Disclosures or download the Disclosures for my records.
E.
This E-Sign Acknowledgement and Authorization applies to these Disclosures and all future Disclosures related to APFM's services, unless I revoke my authorization. You may revoke this authorization in writing at any time (except where we have already disclosed information before receiving your revocation.) This authorization will expire after one year.
F.
You consent to APFM's reaching out to you using a phone system than can auto-dial numbers (we miss rotary phones, too!), but this consent is not required to use our service.
Burnout is overwhelm due to work burdens. Secondary traumatic stress is when you are exposed to suffering and it causes you to suffer.
Burnout: I have too many chickens to feed, I've been so busy I haven't slept in two days.
Secondary traumatic stress: The chicken died in my arms with its guts hanging out, after seeing that I haven't slept in two days.
In my chicken example, the cause may seem similar, as the caregiver has a lot of chickens and chicken-related things happen. The effect is similar, as it is lack of sleep. But the thing that is affecting the caregiver is burnout in one case and secondary traumatic stress in the other case. The "cure" is also different. Burnout can be managed with a vacation and workload shifting. ...Being traumatized requires a good trauma counsellor and changing your exposure to the source of trauma. Trauma can even become PTSD from being exposed to another's suffering. The trauma can be really bad if you have close emotional attachment to the person who is suffering.
Sometime the secondary traumatic stress is called compassion fatigue but that language may be used imprecisely online.
A reference for you, with abbreviations:
"Common Caregiving Abbreviations and Acronyms"
https://www.agingcare.com/articles/common-caregiving-abbreviations-and-acronyms-435589.htm
While the Caregiver Forum is filled with tips, advice and support, it may also contain abbreviations and acronyms that may be unfamiliar to some readers. We have compiled a list of both professional and colloquial abbreviations commonly used on AgingCare.
Or, just search the word: abbreviations.
You've got so much taken care of for your hubs.
Now what about you? What are you doing for you?
It could be anything from meeting a friend for coffee every week, or taking an exercise or yoga class, getting a massage, taking a dog for a walk, going on a day trip, taking yourself out for lunch, getting a manicure, visiting a library or bookstore or museum...
You get the idea.
Anything fun or soothing that speaks to you and is appealing.
If you do feel burnout then start seeing a therapist to have someone to vent to and to.
It occurs to me that maybe what you are summarizing as ‘caregiver burnout” could be a form of depression?
Your entire life changed with no promise to return to normality as a result of your husband’s illness. All you had pictured as what would be your life together has drastically shifted and you’ve had to quickly adjust and give up a lot.
All that is enough to make someone feel at the very least sad, tired, and even angry at the reality that came to life. The routine you had to adjust to is far from pleasant nor easy, so in my opinion it is more than understandable what you feel.
I have always thought that the biggest challenge of a caregiver is not the physical aspect of the process (helping with basic needs, transportation, etc).
Instead, the hardest part is what goes on internally, the loss of the human being we love -I don’t mean physical loss, just the loss of who our LO (loved one) used to be before the illness-, the sudden transformation of our present and future life, and the sense of loneliness that I think all caregivers experience.
You are really the person who can best identify what could help you. I would say at least take advantage of the help you already have and use that little bit of freedom to invest in YOU. Think of what would excite you, new projects, new or old hobbies brought back to life, relaxing time for you and even plan some down time doing something fun with your hubby, something he can do. That, I would hope could bring back some joy and help you get rid of the tiredness and sadness you feel, substituting it with something that fulfills you.
The caregiving path is never easy, never Dawn. And we are really entitled to feel whatever we feel. This journey teaches us to be patient and kind not only with who we care for, but with ourselves. We learn to forgive others, and ourselves!
It is very important to realize when we are reaching a yellow or red zone, to know we need to stop and change our routine in a way we bring some peace and hope back in our lives. This might be your yellow light, don’t ignore it!
Best of luck in your journey!
I put in nearly three full years taking care of my mother. She passed away six months ago and I'm only now starting to feel more like my old self again. All kinds of people have told me what I "should" be doing and how I "must" feel but it's all unique to the individual and the situation. My point being that in spite of having the wherewithal regarding help and etc. your feelings of being burned out are just as valid as anyone's are.
It takes a huge toll.
I pray that you are able to arrange some ME TIME, just to get a break here and there several times a week, just so that you can turn off your brain, and enjoy life once and a while.
Care giving is hard work, even if you have a lot of help. We took care of my FIL in our home for 13 years, but it was the last 9 weeks of his life on Hospice Care until he passed away, that was the hardest by far, both emotionally and physically. There was Hospice help in many times during the week, and We felt We had to have the house clean at all times, him clean, fed, medicated, and ready to accept the medical care and visitors, even if We hadn't had a good night's rest, and we were exhausted all the time, and we could never leave the house together at the same time, so it was super difficult, despite the great care we/he received from Hospice, which we greatly appreciated!
Rremember, this is but a season in your life, things will change eventually, and then we need to adjust to the next season, your new normal, no matter how difficult or joyous. Just remember to take care of you in all of THIS! God Bless You!
Yes, you have help but you're the one making that help possible and functioning. You're immersed in it.
Find the opportunities to take care of you. You matter.
This is what burns me out, never being able to stop it in my head.
Even though you have help in place you are still in control and that means it all sits squarely on your shoulders.
Find a way to escape mentally from the entire situation, whether a hot soak, a good book, a talk with a friend or a walk, whatever you enjoy and can be submerged in. You need to take care of you on this journey.
The physical aspect is usually the easiest part to deal with. As you are seeing first hand.
Hugs 2 u and come here to vent, rant, rave, question whatever you need. Lots of good people here willing to help you get it out. There are even some good scraps that take place, no one will hold anything against you. You are in a tough position and I believe everyone wants to help others feel stronger and more stable on this sorrowful journey.
May God grant you strength today and all the days you are on this path.
The worst thing you can do is sit around and ruminate about what’s going on. I am not the sort of person who volunteers, goes to coffee shops, walks in the park, etc. So, I read, knit and craft, athome where I’m still available for my husband but also on my own personal getaway.
You have have every right to feel any way you want.
I give you huge kudos for being proactive and arranging others to do what is needed around the house, transportation, and grocery delivery. That will lift some of the weight off you as well as others in your life (any kids, friends, relatives) who otherwise may feel the need to step in and the eventual chaos it would bring if left untended to. I think what you've done is great and I wish more people would do what you are doing.
I wonder if perhaps just doing small things that you like such as getting outside, taking walks, any hobby like needlepoint or reading may give you a mental break on occasion. It is easy to abandon those things when we are full time caregivers.
Counting your blessings is a good thing, and you obviously do that. But it is equally important to acknowledge adversity and be kind to yourself for minding it.
Full marks for delegation, too. But what about actual respite, r&r for yourself? Do you get any?