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Caregiver burnout

UAMS
  • By UAMS
  • Posted January 1, 2009 at 12:44 pm · 21 replies
  • Shared with the public
0 Recommendations

I am tired, weary and worn. I don't know why God is torturing me and my husband.

Explore topics in this journal entry and replies:

Cancer Ativan Seizures Pulmonary embolism Oxycodone Pain Memory Lung cancer Stress Xanax

21 replies

Marg

Oh my dear, God doesn't torture us. I'm sorry you are on this path. Your plea indicates you believe in God. Turn to Him. Yell at Him if you are agry with Him. It's not like He doesn't already know you are angry.

Do you have someone you can talk to?

I wish I could just put my arms around you and pray with you, have a cup of tea and give you a chance to leave the house and relax.

CeeAnne

You have come to the right place. There are many here that you can lean on. It may not help with your physical exaustion but they do wonders for your mental tiredness. Welcome!

MrsC

I know you are exhausted. I went through the same exhaustion as you are going thru today with my Mother. My father has Alzheimers and I worked 60 hours a week. I needed 48 hours to do what needed to be done and still watching the deterioration of my m\Mother was burtal... I would do it all again.. Try to enjoy just the smallest things. Maybe just when you share a memory, or knowing he ate something he enjoyed.. these little things will bring you so much comfort later on or a smile when you need it at the strangest times. I know God does not always work in a way we understand but he is there for you when you ask. He will give you what you need. Just Ask and remember you have a lot of folks here rooting for you. From one care giver to another...

L2d2b3a

I share your feelings. My hubby, ExSCLC ,dx in April 08, is doing okay but this cancer has cost us so dearly. I am the upbeat one, the one everyone looks to for support and a smile but lately those are fewer and harder to come by. I pray so hard for God to give me the strength and to be thankful that I have this time with my hubby, but somedays I feel as you do. Why us? Then something small happens, he will relay a memory that I havent heard and am shocked to hear as my hubby has always been kind of reserved and standoffish with people. (We are the classic opposites attract example) We took a long drive up through the Adirondack of NY in October to see the wonderful colors and we drove past places that brought up memories from his youth that I had never known. Memories that made him seem "human", a soft side that I have not really seen in the 36 years we have been married. How sad to not have known this side of him until now. But I thank God I am seeing it now. I can pass this side of him along to our children and grandchildren. So, hang in there, keep in touch and know we are here for you and anything that you can say will be totally understood and experianced by someone on here! Take care and welcome. Lucy

Nin7366

I'm so sorry you are in this fight. You remind me so much of my Mom. She's so tired.....she never sleeps. My Dad has gotten to the point where he likes to wander, and she sleeps in the living room on the couch so she will hear him if he opens the door. She has taken a leave of absense from her job because she worries too much. I will pray for you that you find some relief.

Scaredwife

I can feel your pain. I am "trying" to take care of my husband and that in itself is a long story BUT..........
Like Marg said God does not torture us.
Nothing that is bad comes from God and Cancer is bad!!
I think sometimes God moves his hand of protection from each of us and allows Satan to have full reign for a purpose but HE never.......ever tortures us.(My personal opinion)
If you have a minister or a church family member to talk with they may can help you. See if someone would come in for just a little while to give you a break.
Go out and get some fresh air. Get along with yourself and talk to God.........He will be there waiting for you.
You are in my prayers
God Bless You

GypsyGirl

I know what you are talking about. It 'is' hard when you just want time to love and grieve for the person that we are losing; and yet you have to work, cook, clean, pay bills, go to appointments.... it's never ending. The exhaustion only adds to it. You 'have' to let others help you! If you have family near, or church members... let them in! It allows them to be blessed for helping AND you can go sleep, go to the mall, soak in the tub.. just step back for a moment. Let people clean your house, run your errands. Hospice is good for this depending on where you are in this journey. I feel for you. I went through it with my father 2 years ago and now my husband was diagnosed. Make 'quality, fun' time with your husband. Because as much as you are exhausted and don't know how much longer you can go on... "this too shall pass." When all 'is' quiet, you will wish for time to talk and walk down memory lane. Go with God my friend...He's always there, and will be your biggest help!!

copaiba

Of course you are tired and weary and think God's against you. THIS SUCKS!!!
Try to find a way to get a little more sleep than usual for a night or 2 if you can. Sometimes it just isn't possible, but as soon as it is...take a xanax if you can get one and have the time to sleep for 8 hours straight. What a beautiful feeling that is. And if you are still letting me boss you around, don't make a habit of it - addiction is just another pain in the butt.

UAMS

Thanks for all the replies, support. My husband has adenocarcinoma of the lung with mets to the brain. He was diagnosed May 2002. He's been through so much and now his body is telling him: NO MORE....although I think his spirit is holding on....sometimes life is not worth hanging onto. Hospice is now involved and that is a blessing. My kids are around and that is a blessing. I am so tired and just so incredibly sad. I am thankful for the last six years. I have had some wonder-filled conversations with my husband and the opportunity to say goodbye.

Marie400

Please let your kids and Hospice help as much as they would like to. Hospice is a God send, not just for your husband, but for you too. I know how hard this is. It's physically, emotionally and mentally demanding and just completely drains you.

Spend the remainder of your time with your husband just loving him. Your sadness is understandable, but I know you'll feel better knowing you were with him until his journey was over. I'm sending you a big hug and a prayer for both of you.

UAMS

Jim hasn't drunk or eaten anything in 48 hours. He has cheyne-stokes respirations, is incontinent of urine. He responds to his name and to touch - opens his eyes but they are glassy in appearance. He moans sometimes. I give him his oxycodone and ativan when he moans and becomes a little agitated. God Help Us. Please let the angels come and help him let go. This is so Horrible.

Family4Me

Oh darlin hold in there. I cannot imagine the pain you are feeling right now. Sending a hug your way.

erinroro

I pray an angel will come to stop his pain and allow him a peaceful journey. I pray that you will find comfort knowing he will soon be free of pain. Loving and caring thoughts headed your way.

Erin

NSCLCdaughter

UAMS, I am wondering if your husband is still with us. Your husband is taking the same path that my mother took. She developed Cheyne-Stokes respirations with 10-15 second apneic periods at first. Then, these periods increaded to 20 sec. and then 30 seconds.

We used lots and lots of touching with my mother during this period. Before the longer apneic periods, she would yell out, "Help me! Please help me!" to all of her children and she would attempt to get out of bed, saying, "I have to get up from here!"

It was heart-wrenching to watch and frustrating not to be able to do anything but just be there for her. We kept her mouth moist as she, too, stopped eating and taking fluids at that point.

We believe my mother began to have some small seizures. Then, her breathing became more labored. My mother began to moan at times and sigh with her deep breaths.

Finally, her eyes became glassy. Her blood pressure dropped to 80/40 and her pulse became rapid and extremely weak. Her extremeties would get very, very cold and then warm up. Fluid built up in her lungs. My mother also had a pulmonary embolism which wasn't diagnosed until we asked the doctor to get a CT to see her lung status. Unfortunately, she died with 48 hours from the CT scan and within 24 hours of the 30-second apneic periods.

Just talk to your husband and say all that you want to say. Keep up the touching and use relaxation techniques with him. You might consider telling him that the end is near as my sister did with my mother. For my mother, this was a cue that she needed to let go once and for all. She so fought the good fight and had stated over and over that she did not want to die.

We still aren't convinced that her doctor did all that he could do. There is controversy with the DNR as it often erroneously signifies a "Do Not Care" attitude. My sisters and I feel that more could have been done to address the acute symptoms my mother had due to both the pulmonary embolism (not sure this didn't take her life!) and the chest radiation (pnemonitis noted on CT scan).

At any rate, you husband doesn't have much time at all from the sounds of it. He could rally, but assume he won't for the moment so that you give him your all in his final stage. You won't regret it.

I know the infinite fatigue and the extreme emotional stress! I label it a form of post-traumatic syndrome and it will take weeks, if not months to recuperate from the experience alone. It's been just two months for me and I'm just now getting my mind off the experience. During quiet times, I go back there in my mind automatically, though. It will be a long, hard road back!

The fact that my mother's cancer was diagnosed last December (2007) didn't help getting through a second season with the black cloud hanging overhead. It was simply grueling!

Be sure to get some rest when this is over. Take time to gently reflect, but try not to obsess as it is so easy to do in the aftermath. Everything will be surreal for a time; reality takes time to return. Just those once daily phone calls to my mother return me to reality...I feel so empty now. I can't pick up the phone and just call to ask or tell her something. A very strange feeling now.

Our prayers are with you. In the end, my mother took her final breath with her daughters surrounding her and holding her hands/arms. We did the best we could to comfort her; I know you are doing the same.

lbp08

from your UAMS I assume you are in the Little Rock area? So am I and have been searching for a support group that meets in person. My mom was just diagnosed with NSCLC - not sure which of the 3 subcategories it is, we meet with the oncologist day after tomorrow, Wednesday. I can understand the burn-out you feel - this site has been a God send for me - I read things that really give me hope when I feel none. You are in my prayers. If you would like to talk, email me at bpflowers1@aol.com

janetrn

I went through some real tough times, sad, painful, angry, scared. you name it I went through it for one year. It was such a roller coaster and it is hard. I lost George 5 months ago and not a day goes by that I dont miss him. I will never be the same person and either will you. Reach out for support and know that we all find the strength to carry on. I wish you well and be strong. My email is janetrn1955@yahoo.com. If ever you need to talk to me I will be there for you.
Janet

Jolene

I am so sorry for what you are going through. Care giver exhaustion is physical and emotional. All of us who have been primary care givers or not, know what you are feeling. Only people who go through this truly know what it is like.

My heart questioned the reasoning to allowing suffering too. I am reminded that God's divine purpose does not intend to hurt us. The Bible never tells us there will not be suffering, pain, sorrow.
It does tell us to stay firm in our faith, that God will never leave us in our time of need. He gave his son to die on the cross; the ultimate sacrifice so that when we die, we will forever live. God knows what pain is. HE knows what sorrow is. I pray for your husband as he embarks on his next phase of LIFE.
I will pray that God gives you the continued strength you need to do what you have been doing for a long, long time. Look at all the lessons you have learned from this experience and how it may one day help others. You are a strong woman and wife.
Take care and get rest when you can.

Hugs from Iowa. Jolene

UAMS

My husband passed away peacefully with me at his side at 3AM. I loved him very, very much. I know that he is in a better place and that someday I will be reunited with him and that his spirit and "wacky sense of humor" will sustain me until we meet again.

inHim

UAMS,

Although I don't know you personally, please please accept my condolences. I too am a caretaker - it is my husband who has stage 4 lung cancer. We have just begun the journey (diagnosed this past October). I am taking things one day at a time because if I begin to think about the possible years and years of continuous care taking.... well it seems it will just get harder and harder. I need and continue to need God's grace. I am glad you were able to be at his side when he passed. And yes, he is in a better place. Our Being, our Essence, our Spirit, the God in and with us never experiences death. God be with you and give you the peace that passes all understanding.

sweetmama

I indeed know what you are feeling. We have just buried my father in law a little over a month ago. I was the main caregiver. 5 years before that We also were the main caregivers for my father in laws brother that died of cancer and there again I was the main care giver. As of this moment I am the main caregiver for my husbands 90 yr old uncle and I am in sever burnout and I am trying to do daycare part time. I also have my house my 2 kids and husband to look after. You have come to the right place. This board is a wonderful place to be and vent and get help. This is a place that does not judge. IT is wonderful.

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