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To be very honest it was the hardest thing I ever had to do. To watch your mother who was a strong, healthy women get dementia. Laying in a bed for months was to much to watch. It is mentally and physically VERY difficult. I help the elderly on a daily basis and it is extremely sad. Many do NOT even have their family that helps them. I wish I could do more for them. BUT, I can`t I have back and neck issues myself. There are days when it is so difficult to watch them struggle.. Being a caregiver can drain the life out of you.. BUT they need us. So we do it. ..We definitely need better places, stricter rules in taking care of our elderly!!!!
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There were days that I hated the position I was put in, taking care of my mom, when she had Alzheimer's, but then I adjusted my thinking from I "have" to take care of my mom, to I "get" to take care of my mom. That change in perspective made a big difference. Of course, I resented taking care of a sometimes ungrateful stranger, the ungrateful part taking precedence over the stranger part, (stranger in more ways that one, as in a stranger have behavior that was becoming stranger by the day). I even wrote a book about our travails dealing with this called, "My Mother Has Alzheimer's and My Dog has Tapeworms: A Caregiver's Tale." I tried to write it with humor and heart, because, as you know, you need both, especially when dealing with this disease. I knew that my mom's sometimes irrational behavior was due to the disease, not her choosing.
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I too am angry and frustrated. We were both working spouses with our own interests. Now 24/7 and very difficult. Husband had a hip replaced and is a fall risk, so I have to get up with him all the time .when sun downing starts it’s up every 5 minutes. He has no memory of surgery or falls. I pray every day for Gods gifts so I can help him.
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Got the prayer.

LORD Jesus - SylviaT is having difficulty with the job of caregiving. She is tired and needs rest. Her husband is very different from the person he was when they married. She needs to see glimpses of the man he used to be. She is frustrated. Help her to have Your perspective on her situation. Bring her willing family members, good friends, members of the family of faith, and paid help to come along side of her and her husband and to help. Help SylviaT to get good sleep every night, good meals at a reasonable pace every day, "time off" to care for her own health, and "time off" to enjoy the life You gave her. Help her to only say words that are helpful to others as You fill her heart with Your love. In Christ Jesus' name. AMEN

SylviaT - now walk in the knowledge that God sees you, hears our prayers and provides all that you need in the life you now live. Do what you need to regain your perspective and some balance in your life. Hugs!
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A benefit to being a caregiver is that it fixes in your mind you don't want to end up being the one cared for.

My eyes fell on this book on my bookshelf the other day: The Better End -- Surviving (and Dying) on Your Own Terms in Today's Modern Medical World by Dan Morhaim (adjunct professor in the Dept. of Health Policy and Management at Johns Hopkins).

I took it off the shelf and started reading it. If I haven't been seeing first hand (my wife and SIL are caregivers) the awful demise of my MIL with end stage dementia the book might have sat there until it was too late to do any advance planning.
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Sunnydayze Mar 2021
I agree! I’m doing everything possible so my children won’t have to go through this with me!
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i am so sorry for you. I take care of my 87 and 89 year old parents. It’s extremely exhausting emotionally and physically. I do not have any help. It’s just me I don’t want to do this anymore. I just want to be their daughter not their care giver. I’m trapped. It’s taken a huge toll on my marriage and my life. I love them both dearly but it’s tearing apart my life. I don’t know what to do. I understand what you’re going thru but sadly I have no answers 🙏🏻🙏🏻🙏🏻🙏🏻🙏🏻🙏🏻🙏🏻🙏🏻🙏🏻🙏🏻🙏🏻🙏🏻🙏🏻🙏🏻🙏🏻🙏🏻🙏🏻
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To everyone that answered, I thank each and everyone for your response. I know we all burn out at one time or another. Aids are not an option for me, because I can't afford them, plus no longer that they are at the house, it's not worth it. I am feeling better, because I went to my church on Sunday and had a good cry with my Lord at the alter. My God is my support group. He's my everything. I thank my God for my wonderful church family and also my mom. Me and my husband also had a good talk and I tried to understand what is going on with him. So that I can understand and better help him. We've been doing better since we talked. Everyone here I know have their own ways of coping. I read yall's answers and my heart go out to each and everyone of you too. Thank you for caring enough to take the time to answer my question. God bless you all!
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Laswin Mar 2021
Sylvia, I am so happy to hear this. I had a good long ugly cry with God on Saturday, first one I’ve been able to muster since we brought mom (96 with dementia) home to live with us on Thanksgiving day, and He really made a miraculous difference for me. To quote a new worship song I heard recently,
“You turn mourning to dancing
You give beauty for ashes
You turn shame into glory
You're the only one who can!
You turn graves into garden
You turn bones into armies
You turn seas into highways
You're the ONLY one who can!”

Please know that you are not alone in your struggle - thousands of us understand and are rooting for you and each other!
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Hi Sylvia T. Thank you for your courage in expressing what I, and no doubt thousands of others, am feeling. Thanks to all the folks who have responded to this question. You've already helped me this morning. This forum is the perfect place to vent, gain insight, support and encouragement. All without judgment.
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SylviaT Mar 2021
God bless and feel free to vent to me anytime. I have a friend that says she'll listen to me and I can vent to her, but she always end up making it about herself. So, I've learned she really don't want to hear me. I've also learned that since my husband got disabled with Parkinson's that those friends I used to have are no longer around. It's ok, that's life.
I just know who I can and can't depend on.
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I agree with everyone. Caregiving is to me the hardest job for anybody. It's not something you learned in school or by chatting with a friend. Everyday is a new experience. Some good, some terrible all with ups and downs by the minute. It's a challenge, that can be overwhelming to most people. It tests your patience to the limit. It tests your energy level to the last ounce. It tests your mind 24/7.
I now take care of my husband. A wonderful man . We've been together for 43 years. The pain in my heart to watch he regress in health and mind is devistating to watch. He has Parkinson disease, prostrate cancer remission for three years now. Also lung damage due to blood clots.
I also at the same time cared for both my parents. Both whom have passed on three weeks apart. I did the three of them together for quite a few years. I
too, was overwhelmed at it all. No sleep, constant doctor visits, medicines , hardly any sleep since they all had different sleep schedules. Diaper changes, feedings etc.
I decided that for me a nursing home was not a place I wanted them to go. So when I made that decision I also decided that I would not allow myself to become angry and I let everything roll off my back. I didn't have enough time in a day to argue, fight, try to reason with them. When I was able to sleep I would push out the bad and only think of the good that happened that day.
For me it was the best decision in my life . I was able to care for each one of them.
To have that end of life experience with my parents brought us so much closer than we were ever. Taught me the true meaning of family. And most of all for me I got to show my parents the love that they showed Me when they brought me into
this world..priceless time memories I will never forget.
We love, laughed, cried and talked until the very end.
Im thankful I still have my husband. He's declining but I wI'll be there until god says
Its his time.
I have no regrets regrets. I would do it all again without thinking twice.
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Scoobysnacx26 Mar 2021
I currently care for my two parents, one on hospice and one just diagnosed with stage 4 pancreatic cancer all by myself. I know no matter how bad you think you have it, someone has dealt with worse. What I love about your post is that you don't see your experience as worse. I am beyond burnt out and somewhere in the process I forgot how lucky I am to have this time with them. Mom is currently very sick and I spent most of today scared. My spirit and soul struggle daily. I always manage the success of my day if I was able to keep them alive, out of the hospital, and not able to fall. Today mom fell. She wasn't hurt and it was when I was assisting her with a transfer. Dad was very mean and agitated when I asked him how much water he drank today which resulted in him crying and apologizing while I was helping him to bed and me crying to. Everyday is a rollercoaster ride of stress and heartbreak. I need more grace and compassion and a thicker skin. How can I be more like you?
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Yes, I will pray for you.

I do not hate my husband but I intensely dislike being a caregiver at this late stage.

Earlier I was filled with sense of mission to make him better. That was ten or eleven years ago. Today we are well into several health issues, one of which is Parkinson's. My mission only succeeded in adding more and more medications and appointments to our routine. He never, ever has felt better.

This morning he got up at 5:30, went to the stove, put a pan on high heat, and burnt eggs. I woke up smelling burnt and nearly had a heart attack. Now we seem to be in a new chapter, the chapter of "I can't leave him alone at all."

Just recently I hired help for three hours a day. That has made a huge difference in my attitude. It is why I can be typing this note.

Get help, get sleep, get going! I wish I had not waited so long!
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ConnieCCH Mar 2021
Can you take the knobs off your stove and hide them? You might sleep better. If that won’t work, flip the switch on your fuse/breaker box for the stove when you go to bed.
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Sounds like you are just really exhausted. You need some time off and help. Every cafegiver has experienced burn out.
Is there a friend or family member that can give you a vacation? Is there a Social Worker in your town you can call that can set you up with options in care? Perhaps there is a facility you can use.
Look for a local support group. Call your local Senior center.
Call a local church. You need help now.
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I hear ya! My mother has dementia and she does things that are not her. That being said, try to find some time for you. I don't care if one of your kids watches your husband or a friend or another person for an hour. Find that time to get your nails done or go in another room and read a book. I used to go to the bathroom and sit on the floor for an hour to read. I would lock the door and then she would try to find me even though someone else is there. I sit very quietly and read. It makes a world of difference to find that peace. Then you can go help them.
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Not everyone is “cut-out” to be a caregiver. Almost everyone that becomes a caregiver, becomes one by circumstances; not by choice. It’s an immense life changing event, and some people cannot adjust and handle it. If this is your case, then you need to place your LO in a Nursing Home or Memory Care - period.
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It was a privilege and a blessing to be my mil's caregiver for the last eight months of her life. Being my husband's caregiver is the exact opposite. Go easy on yourself, sister.
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It is hard being cared fir and it's hard being a Caregiver.

You need to put yourself in their shoes.

Sounds like you are burnt out and you need a break.

It would be good for both of you.

A caregiver should be loving and kind.

First, sounds like you need some help.

What ever amount of time you are working cut it down.

If you're working a 6 days cut it to 5.

If you're working a 12 hr shift work 8 hrs.

If the above options don't work then you should take some time off like a week vacation and see if things aren't better once you return.

In the meantime, make sure you yourself are getting enough sleep.

Tare 10 minute brakes during your shift and go outside and get some fresh air and sunshine.

Play soft nature music as a calming effect

You should also do something for yourself once a week minimum like go get a Massage, a Manicure or Pedicure.

Prayers
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Cellbooth Mar 2021
When your the only one doing the care giving there is no time off. No cutting back days or hours. That’s what makes it even harder. There is no breaks 🥺
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i am 71 yo and i enjoy caregiving for my 94 yo father with dementia. granted, i do not do it 24/7. my sisters and i have paid help. buy when i remember what a wonderful father he was, and is, i am greatful that i can help him out instead of putting him into a facility. my problem is that my sisters will not let me provide care as much as i want. they are afraid it will be too difficult for them to find replacement if i get sick or injured or unable to give care. it is very frustrating for me and sometimes i feel resentment toward them. that is where i am right now.
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AnnReid Mar 2021
My mother spent 5 1/2 VERY happy years in the best residential care center I was able to find.

Don’t assume, as I once did, that because you’re a loving relative you can provide the best care possible.

In my case, and my mother’s, that was NOT true.
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Oh yes! I hate this job...even with mom now advanced from Memory care to an Assisted living facility....my life revolves around monitoring her care, staff calls, zoom calls, store stops , nursing issues and her happiness....She is my first and last thought everyday..I love her. She was a great mother who deserves my care and devotion but I would be lying if I did not say its getting old..2 years of constant concern and three physical moves in 12 months to get her now in a facility next door to me {a 5 min walk}.....her dementia is Lewy Body and we get some great days..my retirement was short-lived..she needs to see me every 2 days , even if it is just outside her window these days...Traveling is almost impossible....I dream of a day when it can be all about me and of course that provokes guilt!! Our reward as care givers will come later...stay strong..pray and get counseling if needed..it helps! I also said I would never put mom in a “home”....sometimes your own limitations will change that path for you..with 8 spine discs herniated..there is no way I can lift and lug mom to get her needs met..never say never...
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SylviaT Mar 2021
I know what you mean about the back. I have rods in my back and a total shoulder replacement on the right shoulder. I am doing much better this week. I feel much better this week. Thank you for being honest with your response.
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I hate it too. I take care of my mother who cannot do anything for herself but eat and drink and shuffle with her walker to the toilet, lounge and bedroom. She cannot even get herself up out of the chair or toilet. Not only are we both subjected to daily indignities, me to clean her rear end and her to have me clean it, washing and clothing her and having to tell her what to do, but she is a constant reminder of how much she has lost and how much I one day could lose. Such an independent dynamic woman reduced to this. It's soul destroying. My father went the same way and died alone and terrified in hospital from his dementia nightmares. I wouldn't have wished this fate on my worst enemy. I hope I die before this happens to me and having to subject my own children to this horror.
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Hey anneeculver.

I am a man whose mother has and is putting him through hell. I gave up a good career only to be abused for my reward of being a good son.
I do all the work for no pay and get crapped on for a thank you.
The other sibling and his daughter and her family do nothing but empty mommies bank every month.
There comes a time when you say enough. From now on if she wants anything done she can either get them to do it or pay me.
If you want to make comparisons, from my observation both with other care givers I know and from volunteering in seniors homes before becoming mommies slave the majority of the abusers are narcissistic mothers from hell.
As for you sister, perhaps you need a rest from your duties. Besides, we all get tired once and a while.
You are in my morning prayers.
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Hey Sylvia I understand your frustration. I take care of my mom. I wouldn’t say I hate caregiving. I’m glad I’m in a position where God allowed me to do this. I would never have my mother in a nursing home on my watch. I never get angry, I just ge physically tired. I have a routine, I take care of myself in the morning for about an hour. I take care of her all through the day, then at nite I close out the evening by taking care of myself again. I will definitely pray for you. You sound like a nice person that’s willing to express the truth. But it’s ok, no judgment, I’m sure more than 50 percent of people on here have felt that way at some point.


Thanks for sharing 😍
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Sending many hugs and prayers to you Sylvia. I think we all have those moments. I have come to realize it really is not the caregiving I hate- but the disease. My husband has Parkinson's and for the last 14 years I have watched it take away so much of the husband I had. Lots of anger, lots of grieving, lots of stress and lots of exhaustion for me as I help him through this disease each day. But I have found a place where I cherish small things and know there are many small things the disease cannot take away. I also know for sure God loves us and understands every single emotion we have. He created us! As we learn of His love and forgiveness then we also learn to love and forgive ourselves. We as caregivers are doing our best! Think of all those who walk away from helping, We don't. We stay. We struggle. We endure. We also have our own weaknesses and need kindness and encouragement. That is why I love communities like this where we can give those gifts to one another. Today may you find peace, rest, and know God's love is full for you not just in the good moments, but in every moment. He loves us and I believe He loves us more in our struggles than in our times when everything is running smoothly. The more we lean into Him the more strength we find. Have you taken time to do something you enjoy away from him for awhile? Finding those moments to quiet our own soul matter so much!
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Nazdrovia Mar 2021
I wonder how much God loves me when he knows of the anger and rage within me at having to be lumbered with caring for my father just 3 years into my marriage. I'm selfish and I hate it and I hate my siblings for getting on with their lives under the guise of false sympathy that my husband and I are his caregivers. I've actually put my phone on do not disturb as I don't want to speak with them.
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Caregiving is traditionally women’s work and, like all “women’s work,” is not paid, Therefore it has no monetary value. It should be respected & paid accordingly. We still have a very long way to go.
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Chris52 Mar 2021
Did you perhaps intend your reply for a different question?
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The way I found this forum was one day I googled "I hate being a caregiver". I am not sure why I did that or what I expected other than I was feeling lonely, frustrated, resentful, tired, trapped. It led me to this forum.

I got on to a thread where this woman was literally suicidal, she was so depressed from caregiving and having no life. I realized there were others like me and that I was not a terrible daughter and wife. I wasn't suicidal but did realize I was experiencing compassion fatigue as well as physical fatigue and depression. I set the bar high for myself and kicked myself when I too, got snippy, snappy, crabby and shrill with them.

I had it in my head , well, it was put there with the assistance of many family members that I should be enjoying this. That I should be grateful. Happy even.
Did not know why my life did not look like all the glossy caregiving pamplets and commericials. I recall one commerical of a lovely elderly woman standing on the steps of her beautiful home with two beaming attractive adult children. The guilt line was something like "dad made us promise not to ever put mom in a home".
Yeesh.
So much is thrown at us, telling us how we SHOULD feel, and if you don't the guilt and self criticism sets in, which leads to depression...and so on.
I found so much help, hope and acceptance here. It's my sane place when my life gets too intense. Welcome and I hope you find support here as well.
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Christservant Mar 2021
Boy do I know this to be true.
I tell men and women that make stupid comments like she is your mother so you have to take care of her or she is a good ol girl that I am more than willing to have them come in and take care of her for a month so I can have some time off for the first time in four years. It shuts them up fast.
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I think people go into caregiving for various reasons.

If caregiving continues for an extensive period of time, they will most likely grow to absolutely hate it.

Plus, how many people secretly hate it but for whatever reason they won’t openly admit that they hate it?

Don’t ever doubt that burn out is real.

People who don’t think that caregiving is hard, have probably never done any caregiving in their lives.
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I understand how you feel. My mom lives with me. I love knowing she’s safe here and getting great personal care, but I would never choose to do this for a living... it’s emotionally and physically draining, although some people love it. I’m sure I sound repetitive to some on here, but if you cannot afford caregivers to take some shifts, I would contact an Elder lawyer and see if your loved one qualifies for an in-home Medicaid program. I have caregivers to come and share the responsibility. I could not do it alone 24/7. Best wishes to you.
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It’s time to get help ...YOU NEED IT!!! You have reached the end of your rope. Hire a caregiver for a few hours each day or think about a facility. Either way, things can’t continue as is. Hugs 🤗
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I also mess up with my mouth and attitude a lot, especially when I'm worn out. I try to be quick to ask for forgiveness and move on. I think our love and service overcome the mishaps. I'm learning to keep my mouth shut and attitude in check when I am tired. There is joy in it also; we watch funny/clean comedians and funny animal shows on TV etc, and laugh when we are caught in the craziness of it all!
If at all possible, I recommend involving others to help out with care. I have a caregiver that helps me with care; he also gives us both companionship and joy!
*To add: it is important to separate the disease from the person... someone mentioned this in a post; it is helpful for sure...thank you.
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I do. That's all I'm saying.
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Hi SylviaT. I will pray for you and your husband. Caregiving 24/7 alone is exhausting. In my situation, I find I get more frustrating when I’m tired. I’m working on biting my tongue and walking away when possible before I say too much that I surely will later regret. I also rest whenever I can so when Mom is napping I try to catch a few zzz’s also. Can you get a break for yourself to refresh even for a short time? Caregiving is so hard. That doesn’t mean we won’t continue and take it one day at a time. It just means it’s so hard. Emotionally and physically. Hugs to you.
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