Caregiver burnout

I have been helping my father with his stage 4 cancer for 2 years now. The doctors are surprised that he is still driving, using only a cane, and working outside with advanced metastatic prostate cancer. They say they have never seen scans like his and are amazed he is alive. Now he my sisters have come in and the will is magically changing with his memory , confusion, and brain fog issues very apparent. Along with moving out of state per his wishes.Expecting me to hand over and hold their hand through everything while also pointing out how it's not enough. It's been just myself no support and no access to help since day 1. I figured it all out alone while managing a divorce, school bullies, counseling services, researching, court, and personal medical issues, along with a child on the spectrum, and another with speech. During all this the previous fights got physical and broke my faith in my support system. My uncle passed away and I was helping him and caregiving for him as well. My friends passed away and moved during this time as well.
I'm so angry, resentful, hurt, sad, regretful, guilty, tired, exhausted, beyond burnt out, jealous, and defeated. I stopped knowing what hope is, I cry when I feel a smile, and breakdown when I laugh. There's so much I want to say, scream, shout and yell, but mostly I just want to be heard, comforted, understood, appreciated, acknowledged, helped. Nothing major but not added stress.

Why is it so hard to understand that I just want them to send a link to a helpful app, support groups, or supplements I pay for out of my pocket, or medical equipment. Even a card to say hey.
I may not be doing anything right. I may not be doing enough. But I know I've sacrificed everything I have for my father and his health. I know I wake up everyday and I give it my best and more, but after 2 years it's not even close to what it used to be. I'm just thankful I can still get up everyday. How can they see what they are doing is not OK? I know they are just doing what they think is best but they haven't been in the trenches.

I have been helping my father with his stage 4 cancer for 2 years now. The doctors are surprised that he is still driving, using only a cane, and working outside with advanced metastatic prostate cancer. They say they have never seen scans like his and are amazed he is alive. Now he my sisters have come in and the will is magically changing with his memory , confusion, and brain fog issues very apparent. Along with moving out of state per his wishes.Expecting me to hand over and hold their hand through everything while also pointing out how it's not enough. It's been just myself no support and no access to help since day 1. I figured it all out alone while managing a divorce, school bullies, counseling services, researching, court, and personal medical issues, along with a child on the spectrum, and another with speech. During all this the previous fights got physical and broke my faith in my support system. My uncle passed away and I was helping him and caregiving for him as well. My friends passed away and moved during this time as well.
I'm so angry, resentful, hurt, sad, regretful, guilty, tired, exhausted, beyond burnt out, jealous, and defeated. I stopped knowing what hope is, I cry when I feel a smile, and breakdown when I laugh. There's so much I want to say, scream, shout and yell, but mostly I just want to be heard, comforted, understood, appreciated, acknowledged, helped. Nothing major but not added stress.

Why is it so hard to understand that I just want them to send a link to a helpful app, support groups, or supplements I pay for out of my pocket, or medical equipment. Even a card to say hey.
I may not be doing anything right. I may not be doing enough. But I know I've sacrificed everything I have for my father and his health. I know I wake up everyday and I give it my best and more, but after 2 years it's not even close to what it used to be. I'm just thankful I can still get up everyday. How can they see what they are doing is not OK? I know they are just doing what they think is best but they haven't been in the trenches.

Burn Out ! Been there many a time, This passed Friday I even called a lawyer, total crashed that morning after my wife started screaming, throwing things and totally trying to push all my buttons.
History on my wife, she is 66 been married 25 years, she has two girls, I have a son and two girls too. All married and total of 9 grand-kids. In 2017 we lost a lot of family members and pulled her down. On December 25, 2018 after auguring during the day she ended up shooting herself in the head. She had said earlier in the day she wanted to die on Christ's Birthday since he took her mom on her birthday.
Being a Fire Captain for 31 yers I dealt with many EMS shooting calls. She was DEAD ! As I kissed her good-by God said to push on her chest and on the second compression she started to breath.
I thanked God above and said I'll take her in what ever shape. Three 1/2 months in the hospital I brought a woman paralized on the left side confined to a wheel chair with 98% of her sharp mind still there.
She is pain always, she struggles with everything she try to do. Did I tell you that it's all my fault, she'll say I should have left her daed.
My history, 70 year old retired Fire Captain, scuba diver and all that fun stuff. I have PTSD, injured from a 20ft. fall into a basement and still breaking in two new knees 1-year. Total back issues and loosing my mind from a chemical exposure and still question my action on Christmas Night. Should I just have kissed her and left the room.
I pray a lot, just quick chats and the biggest help came in a dream and was told to ( BE PATIENTS)

Good Luck

@nikievnikieva ,

I understand. I am much older than you, and take care of my 93 year old father in my home. He is still fairly independent, and refuses anyone from the outside helping (although soon it may be a necessity rather than his choice). Burnout can happen, I think, as a cumulative effect of not just the daily caregiving chores that someone else can help with, but the emotional burden and isolation that happens—involving the responsibility of the role you play. For me, it is the always having to be vigilant for any signs of health changes. Balancing care with sustaining dignity. Coordinating many many many doctors appointments, tests, test results, scans, insurance approvals, etc. Making sure all specialists are aware of results from other doctors lab orders. Asking pertinent questions about everything. Med schedules and balancing those with the rest of life. Watching over finances and paying bills. In your case, I’m sure you have homework and therapies and added schedules to oversee. The list just for me could go on and on, I can’t imagine what it is for you! And no one else in your world can relate because they have not, and might not ever, walk this path. Plus, you have just gone through the betrayal of your partner—that is so hard on so many additional levels! I am so sorry.

I know for me, besides the physical demands of caregiving, the emotional are even heavier. The lack of freedom. When others are doing the things you planned to be able to do, you don’t even get to decide what time you go to bed or get up in the morning. Feeling guilty for even feeling bad about that. The constant feelings of responsibility and not wanting to let anyone down, or miss something important, or forget to do something they need. The stress of doing it all with a smile and light, reassuring tone so they feel cared for and safe. The guilt when I have failed to do something with a smile, or have sounded impatient. All the while trying to do for people who are not infants, people who have a mind and will and opinions of their own to balance and respect. It is a lot and very isolating and exhausting.

For me, I am learning that it’s important to do my best. But I am not God and cannot be and do everything for everyone in my life. I need to trust the One that made me and the ones I love, to minister to me in those moments when I know I am not enough—but in Him I can do more than imagined. I know how hard it is to find a therapist who has time in their schedule, and who you feel comfortable with enough for it to help. I had that, but she retired when Covid hit, and I am still searching. For me, a Christian counselor who incorporates my beliefs and can pray with me is also important. Depending on where you live, there may be resources through a college (students of psychology interning under supervision for training), or Psychology Today online can help you screen for someone in your area who takes your insurance. Some denominations have counseling centers that bill on a sliding scale based on income, as well. I know for me it just helps to have someone I can talk to to let everything out, and not feel guilty that I am divulging my family members private business to someone in “real” life. It helps to keep things in perspective…..

You have been through so much. You sound like such a caring, responsible young woman of integrity and strength. This is a very trying season you are in, with a lot to work through. But life’s seasons change just like the ones in nature. People on this site are very caring and have good suggestions arrived at through many life experiences—that can help.
I pray you can find someone to talk to in person. Even get on their schedule for a future time and call/check for cancellations as you wait. Even getting out for a walk and chatting a bit over nothing heavy, with neighbors can be a respite. Some area libraries have talks and programs for kids up to seniors. Maybe multiple people in your family group could go and find interesting things at the same time to attend there, giving you a break from home routine? I have seen caregiver and grief support virtual group meetings offered on this site—-maybe helpful? The suggestion of talking to your PCP about the things you are experiencing and getting his/her suggestions/options for help (both practical for physical needs of loved ones, and emotional for you) may be something to consider as well.

@nikievnikieva ,

I understand. I am much older than you, and take care of my 93 year old father in my home. He is still fairly independent, and refuses anyone from the outside helping (although soon it may be a necessity rather than his choice). Burnout can happen, I think, as a cumulative effect of not just the daily caregiving chores that someone else can help with, but the emotional burden and isolation that happens—involving the responsibility of the role you play. For me, it is the always having to be vigilant for any signs of health changes. Balancing care with sustaining dignity. Coordinating many many many doctors appointments, tests, test results, scans, insurance approvals, etc. Making sure all specialists are aware of results from other doctors lab orders. Asking pertinent questions about everything. Med schedules and balancing those with the rest of life. Watching over finances and paying bills. In your case, I’m sure you have homework and therapies and added schedules to oversee. The list just for me could go on and on, I can’t imagine what it is for you! And no one else in your world can relate because they have not, and might not ever, walk this path. Plus, you have just gone through the betrayal of your partner—that is so hard on so many additional levels! I am so sorry.

I know for me, besides the physical demands of caregiving, the emotional are even heavier. The lack of freedom. When others are doing the things you planned to be able to do, you don’t even get to decide what time you go to bed or get up in the morning. Feeling guilty for even feeling bad about that. The constant feelings of responsibility and not wanting to let anyone down, or miss something important, or forget to do something they need. The stress of doing it all with a smile and light, reassuring tone so they feel cared for and safe. The guilt when I have failed to do something with a smile, or have sounded impatient. All the while trying to do for people who are not infants, people who have a mind and will and opinions of their own to balance and respect. It is a lot and very isolating and exhausting.

For me, I am learning that it’s important to do my best. But I am not God and cannot be and do everything for everyone in my life. I need to trust the One that made me and the ones I love, to minister to me in those moments when I know I am not enough—but in Him I can do more than imagined. I know how hard it is to find a therapist who has time in their schedule, and who you feel comfortable with enough for it to help. I had that, but she retired when Covid hit, and I am still searching. For me, a Christian counselor who incorporates my beliefs and can pray with me is also important. Depending on where you live, there may be resources through a college (students of psychology interning under supervision for training), or Psychology Today online can help you screen for someone in your area who takes your insurance. Some denominations have counseling centers that bill on a sliding scale based on income, as well. I know for me it just helps to have someone I can talk to to let everything out, and not feel guilty that I am divulging my family members private business to someone in “real” life. It helps to keep things in perspective…..

You have been through so much. You sound like such a caring, responsible young woman of integrity and strength. This is a very trying season you are in, with a lot to work through. But life’s seasons change just like the ones in nature. People on this site are very caring and have good suggestions arrived at through many life experiences—that can help.
I pray you can find someone to talk to in person. Even get on their schedule for a future time and call/check for cancellations as you wait. Even getting out for a walk and chatting a bit over nothing heavy, with neighbors can be a respite. Some area libraries have talks and programs for kids up to seniors. Maybe multiple people in your family group could go and find interesting things at the same time to attend there, giving you a break from home routine? I have seen caregiver and grief support virtual group meetings offered on this site—-maybe helpful? The suggestion of talking to your PCP about the things you are experiencing and getting his/her suggestions/options for help (both practical for physical needs of loved ones, and emotional for you) may be something to consider as well.