I am lost. 6 years ago I was divorced, had to move in with my parents. My dad had Alzheimer’s and mom spent most of her time in bed. He passed away 3 years later and my mom decided to move across the country. I had no choice but to move with her. Now at 80 she is grouchy, doesn’t want me going anywhere without her. Has panic attacks if I talk about working. My son was in a very bad relationship, which thankfully ended and moved in with us. Now she is resentful of him living here, she forgot that we talked about it, so I am always trying to keep her from saying nasty things to him. He is my only outlet when he is not working. Sorry this is so long, I just needed to vent to someone :(
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This is a reality that no one talks about . I'm 27. My aunt , whos 80 , I started taking care of her when I was 19 , hasn't stopped since, taking her to doctor appointments, resturuants to eat, taking her home, repeat , it didn't get bad all at once, it happened over time, by the time I was 24-25, doing CNA, she became weaker, her back pain getting worse , so I would go to work, take care of 10-30 paitents then go home and take care of her , it was caregiving 24/7 ... It didn't stop. I did CNA for 3-4 years while taking care of her. Last year she had back surgery, went into the nursing home I worked at, she didn't stop nagging me to take her home, mind you, I was workign there... So ya. After 2 months, I took her home, a year later I put her back in the nursing home, some one, I no longer work there. I love her, to me shes my mom , because she raised me. But simply put , I no longer want to be her caregiver... I just want to be her daughter.. I'm almost 30... most of my 20's are gone, I can never get those years back . I didn't go to college till this past few months . People don't relize how much someone gives up to be a caregiver 24/7 . You can't go to school, work, date, marry, have kids, or hang out with friends, if your caring for someone 24/7 . It's impossible . Now, most of my family, are in different states, over the years, people in the family slowly stopped keeping in touch with mom (aunt) and me . Including friends... Ya, when your friends know that your whole life revolves around taking care of your parent, and no time to hang out , eat, go to clubs, college, to talk, have fun , nothing, they slowly fade away . Sure people will say, " oh , I'm so sorry ..." But that's it. No one wants to really get involved and help you , the caregiver . Add onto the fact that my mom was hooked on narcotics for 7 years of me taking care of her, so her yelling, screaming at me, constantly , for every little thing I did or didn't do, I had to deal with , no one to reach out to . I didn't get help till her back surgery, and people at my job. Because I couldn't keep doing it 24/7 . She's nicer to everyone else but me . I know she loves me , because I'm her daughter, she raised me. It's the old age, the pills, her physicall pain , mentally and emotioanlly she can't support me anymore... and Ive finally accepted that. Now I let her talk and I listen. I don't tell her my problems... because she can't handel it . It doesn't mean she doesn't care. She's still my mom and I love her . The relationship I had with her when I was a child, and in my teen years is gone. Ive accepted that it wont be that way again . I'm finally starting to get adjusted to living, not living around mom 24/7 . I tried to do it all, job, school, friends, and care for mom 24/7 .... it was impossible. No one talks about family caregivers, the pain they go through everyday . I'm finally getting help for my mental health, taking medication and planning on going to therapy , and support groups . I'm slowly letting go of the anger I had for mom ... Also realizing that some friends and family members will NEVER understand what I went through, and they don't want to hear it . One family friend, literally thinks I can keep taking care of mom ... I can't . Past few months I quit my jobs to care for mom .... till I put her back in the nursing home, because she fell so much at home . I want to be her daughter , but I want my own life too ... people can hate me for saying that, but I honestly don't care. I didn't tell people the truth of how mom treated me at home, till now, I got so numb to it all, it became the normal . I was the caregiver and I was getting emotionally and financially abused (blackmail) . There is only so much a person can take.... if people were more open about caregiving, what it REALLY takes to do it 24/7, I think, maybe then , family caregivers whould get more sympathy from others, more understanding of what they go through everyday .
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Thank you for this article. I took on the responsibility of Mom and her home over 30 years ago never believing she would live to be 100+. For the past 10 years, my husband and I have given up our privacy, vacations and much more to keep Mom cared for. It’s definitely not been easy but being the youngest of 3 children, two of which live in other states, I’ve tried to do for Mom what I felt she would have done for me if rolls were reversed. Early in 2017, her dementia was becoming more and more evident and she fell 3 times in 5 weeks and ended up in rehab at 99. When they said she was able to return home, I made the decision to find an assisted living facility for her because my work schedule would make it difficult to have in home care for her at all times. So Mom entered assisted living and her decline progressed both mentally and physically. During the year she was in assisted living I visited nearly every day and she had numerous UTIs and was taken to the hospital several times, treated and released back to the assisted living. Finally she was hospitalized with a UTI and dehydration to the point the doctors recommended skilled nursing care and she was released to a nursing facility for permanent long term care. Unfortunately, during her stay at that facility she continued to deteriorate mentally and would rarely speak unless you asked her a question and then only yes, no answers. There were rarely any sentences from her and no conversations. A month ago, I found her in terrible condition at the facility which I’ve reported to the NY State Health Department and Mom was hospitalized with sepsis, aspiration pneumonia, a kidney injury and dehydration. She is now on end of life care with Hospice in another nursing facility and is being kept comfortable. It is extremely hard to watch the person who was both mother and father to me since I was 6 years old go through this with no quality of live and simply existing. I feel guilty for saying it but I hope her struggle (and mine) ends soon and she goes to be with God. I say and mine, because I constantly struggle with guilt that Ihave not or am not doing enough but I’ve also had to try and remind myself that she is being cared for and I don’t have to be there twic a day, every day. I’m trying to refrain from going more than once a day to check on her because I realize I’m not taking care of myself like I should and I’m afraid it’s going to catch up with me. I want to retire at the end of next year and pray my own health will not be affected too greatly by the stressful situation I feel I’ve endured as best I could.
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I have ended up living the life of a 90-year-old woman to look after my mother. No nights out, no vacations, no visitors. I am the youngest of three children, and the oldest two live on separate coasts. They visit once every four or five years, but never offer to let me know ahead of time so that I might get away on my own for a while. Out of respect for my mother, I treat them as if nothing is wrong, send Christmas and Birthday presents. I never complain to them. But, I do have fantasies of upon her death, I tell them only after she is buried. I don't want them around me. I actually look forward to the day when I don't have to be nice to them, which I only do now so that my mother's family life is pleasant during her last few years.
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I am not resentful. I am overwhelmed and depressed.
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Thank you for this article. My husband and I just ended 20 months of caregiving my mother in law until she passed away. First, she lived in our home for a year, then a local assisted living home. She wanted a lot of attention and did not adjust well to respite care. It was not easy. I resented that she did not notice how much we gave up to be with her. I did pay to go to a counselor for my own mental health. A wise friend suggested that I “forgive” her even now that she has passed. This was very helpful in clearing my resentment. Many people will appreciate your article.
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you have just described my life in a nut shell. This is not something that's talked about openly. Even in caregiver support groups people hold back in fear of being judged. Waiting for the system to connect the dots for placement is grueling . You are at their mercy. As I sit here watching this man slowly disappear I wonder about the cruelty this disease inflicts on the whole family. I find my self wishing God would call him home. Can't say that in polite society
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I left my 40k a year job to take care of my mother in law after my father in law died. I thought it would be temporary but she would scream at anyone but me or my husband so I had to stay out of work. By the time she passed 4 yrs later I was permanently disabled myself and we had gone through all 120k of our savings. Go ahead and think badly of me but I devoted myself to her, dealt with her mental illness, lifted her in and out of her wheelchair and it was me who was by her side gently caring for her for 3 months of hospice so she could die in her family home. Afterward I could not find a job I could handle even part time and was forced to file for disability. Even had I not been disabled, the 4 yr gap in my work experience would have rendered me unemployable at 53 yrs old. Our future was bright, we should have had at least 400k in our savings before retirement. Instead we had to downsize to a mobile home and have no savings at all. There will be no trips, no eating out. If there is one thing my kids know it is that I will never, ever expect them to care for me. I could never do that to them. I am not attempting to be dramatic in any way but I no more want to go to a nursing home with their inhumane double rooms and horrific conditions than my mother in law did...but I decided several years after she passed that I would keep the meds necessary available in my home and if my husband passes and I need to go into a nursing home I will end my life first. Better that, by far, than to put my kids through this kind of hell. What would fix all this? Better nursing homes. Single rooms, dignity. Medicaid paying for assisted living. Unless that happens in the next 20 yrs I will happily pass before I end up essentially institutionalized. Caregiving is so noble...and it ruins lives... both are true. If you have a question as to if taking care of your loved one will ruin your future, I suggest you stand your ground and find another way.
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My mother in law lives with us ,my wife is the primary caregiver and I do whatever I can to help her out. She has been taking care of her mom for a long time 15+ years, way before we met we moved her in with us so she could keep an eye on her. Her mom has a immune system disorder called Wegener's disease.Her health has been declining over the last 6 years and my wife has to adapt every time something drastic happens she deals my mother in law mobility issues, respiratory issues, heart problems, diabetes you name it. A week ago my mother in law underwent pacemaker surgery and this time I see my wife's exhaustion. She took a couple of weeks off work to be with her because she has not been able to sleep properly since she has to get up in the middle of the night to help her to go to the bathroom. I started feeling resentful about the situation because in a way we had put our lives on hold but the thing that it really hurts me the most is see how my wife's health is being impacted.
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I finally got the job of my dreams I fought for 25yrs to get. I was fianacially able to pay for my 4 childrens college education. Yes , I have 4 in college at once. My husband and were going to treavel and he was going to retire. Then she came along. My sister. A stranger to me as she is 24 years older than me and was married before I was even born. Her daughter passed away from cancer, and I am the only relative left. She was always a mean, nasty person, who felt the world owed her.
I wanted to put her in a home, which her daughter had signed the admittance forms for, but my husband said no she is family.
So now I have had to give up my job, the kids have had to take student loans, he still works and we are a 1 income household now and she has put heavy strain on what had been a solid marriage. Resentful for this mean, nasty, dirty, intolaerable stranger doesnt come close. I have always has infinate patience, but this is too much. And I have put her in adult day care & times and each time I have been asked to remove her because she is physically strong and abusive
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I have to admit that I resent how I have no life, except for an hour or two here and there, and last summer I put my mother in a nursing home for respite to have a few days vacation, my first in years. I will never have a career, just a part time job, and I am grateful for that, because at least I have three days a week with an aide for her. Sometimes I enjoy being stuck in traffic and dread coming home to mom's crying and changing her Depends. It's not her fault of course, and she feels bad about it, which makes it harder. My physical and mental health have taken huge hits, I'm on more blood pressure meds than mom and it's still not well controlled. I'm determined that my daughter will never be a caregiver, I want her to have her life. I literally pray that some day I'll get cancer so I can move to Oregon and get it over with. It's heartbreaking to watch Mom's long slow decline, all the developmental milestones in reverse, she will never dress herself or go potty alone again. I'm also going through the anticipatory grieving, and the guilt. Some things, like getting the house neat and tidy, just are not going to get done because I'm lazy and selfishly choose taking a few hours for myself rather than for chores. I feel guilty because rather than cook delicious, healthy food, I microwave. And I feel guilty because I want more time with my daughter, and can't have that because of mom. No one but other caregivers understands. In this country there is acceptance that parents need help in the form of reasonably priced daycare and free public schools, but we caregivers get next to nothing. No wonder something like a third of caregivers die first. Don't worry, I'm not suicidal, I could not do that to my daughter and my mother. I don't have a life, I am basically a servant to my family, and have to accept that is what it is.
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Great article. I thought I was the only one in the world...for years my mom pretended to be sick and required attention. now she really is and requires attention.. she is in an assistant living facility and spends 4500.00 a month to just sleep in her own bed.. she doesn't want the nurses to do anything for her.. just family. Me and my niece are the only ones that do for her.. I'm there 6-7 hours five days a week and that's after working my full time job....I have hurt my back helping her to the bathroom because she wont wait for help....she has Parkinson's and cannot walk without assistance.. she gets mad and cusses her therapist out every time he comes to help her... being mean for my mom is not part of her disease she has always been mean and manipulative to all six of her children.....and that felt really good to get off my chest...
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Thank you Bethany for caring. 20 years ago when my husband and I separated I moved back to my hometown.I was going to buy my own place but my brothers and sisters signed my mothers home over to me if I would stay with her.They got all the money.The last 4 years are the hardest because she can't be left alone now.My brothers have even threatened to take the house even though I have put around thirty thousand into home improvements.I have been a good caregiver to her but because I have Obama care my brothers have turned against me.They hate democrates.One brother is a preacher,and the other is a deacon
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Awwww my heart goes out to you Marshmallow.... Your one of life's angels. Does your mum live with you or you in her house? If the latter... Have you got a property you could return to at some point? Is there a day care facilitie that mum could attend? Your brothers aren't being very helpful and their entrenched bitterness sound like it goes deeper. Have you access to counselling? Big hugs to you xx
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I feel the resentment you are talking about and I feel I have no way out.My life is over.My mother is 102 years old and I am her only caregiver.I only get out once a week,and that's to take my sister to the cancer center and pick up a few grocerys.I have two brothers that visit on Sunday's and all they seem to want to do is trash me.They are republicans and they say I have sold my soul to the devil because I have Obama Care.I couldn't afford Ins.without it and I am thankful to Obama for it.I have to sit here and take their abuse because I can't leave her.I don't know what to do.Sometimes I want to die I am so miserable.I love my mother but she has sucked the life out of me.
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Good article and worthy topic. Thanks for all the shares, both problems and your solutions.
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Thank you FedUpnow, Its my dad who I've had to face up to the fact is just plain nasty and spiteful. The dreadfull lies and general trouble making he does is just too much to bear. I will be relieved when he's gone, only then will I feel truly free of him.
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terminal caregiving has SO changed my life . i used to be a sarcastic jerk .
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This was a very helpful article, practical and based in reality. I especially liked these two points

-Ask yourself if everything you are doing is necessary or if it's about trying to control an uncontrollable situation. Do you really need to be with them every day?

and

-Ask yourself if you are performing for an audience so everyone will say "what a wonderful daughter you are," or if some of what you do could be delegated to other people.

The need to control can make us take on far more than we need too. Years ago when I learned to let go and cut back, the world did not end....no disasters happened, things just got easier. With my elderly parents I do the same.

I'm also glad to see the "good daughter" trap addressed. If we are doing what we do to impress others or because we fear disapproval then resentment will surely follow.
Great article. Thank You!
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BeBethany: I have lived your experience—taking care of my MIL who hated me and would kick, hit and abuse me. Take pictures and show them to your therapist (If you don’t have one, get one!). Then show these same pictures of your bruises to your mother’s doctor and anyone else involved with her care. This will prove she is abusing YOU, not the other way around.
Don’t put up with it. I did and I regret the time lost, the bruises and was exceedingly glad when she died. She never appreciated anything I did for her so don’t waste your life trying to earn her appreciation. Take care of yourself! The photo you see as my profile pic was taken after one of her attacks on me.
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I think all the suggestions have their place in contributing to possible solutions. However, what do you do if your aging and I'll parent refuses to have outside help and physically attacks the carer?
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Thanks for telling!
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This week i had a meltdown at work because the managers wanted to schedule training the week when i have to take off to take my dad to the eye doctor. My brother says he doesnt want to help dad anymore. I yelled at my secretary and my boss was mad at me for two days . I apologize to him and my colleague. He pulled me aside the,next day and saidcthst my outburst was uncalled for and he realizes thst i Am going through some things. He said next time check my schedule. I have told him that I dont want to let anyone down. He sayscyou are more angry at your brother than at us. I sometimes feel guilty taking this job eight months ago. This job is very demanding and i am an administrator for a government agency. Now i wonder if my colleagues think whether or not i can do my job. I almost typed my resignation but i did because i haven't had a real job with benefits for five years.
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My life changed in a day and my biggest problem is with siblings who fly in and criticize and then fly off. The impact on my social life and health has been overwhelming and this is very depressing for me. My anger is not towards the patient but siblings who have not given me respite. I am going to attend a support group for caregivers. I know have my mom going to a senior center twice a week. She is in a special program and there is a lot of socialization and activities. I do have to drive her and pick her up. I was surprised she had such an adjustment in the beginning but now she is doing well. I try to do activities with her such as playing a simple game but she is not too interested. She loves children so I do have her sit in with reading time when I read a children's book. It is really hard and isolating. I am not sure if the support group will help. I certainly do not want it to be the only respite I get. I miss my old life and this is not the life I planned but I am glad she is here but I wish she had her health.
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Yes, thank you Katie, it's a very good summary x
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Katie, well said. Thank you for sharing your story.
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I kept telling myself to resent the situation we were forced into, not the patient. I cared for my 93yr. old Mom each time she was released from a hospital and in various stages for 18 yrs. Iam her only child. She passed away last month peacefully in her sleep in my home after being here most of the time for 2 years when she wasn't in the hospital or nursing home for short rehab stints. It went from a weekly grocery run and taking her to appointments years ago, all the way to staying with her after surgeries for a couple of months and then finally 24/7 care in my home during which I was doing many things only medical professionals would do. Hospital and hospice nurses trained me to do these things and at the end she did have a wonderful hospice team. There were so many people that made me angry at hospitals, 2 awful but 5-star rated nursing homes for rehab, etc. but I feel the hospice team in the end made up for all the "losers" I had to deal with the last 2 years. I tried not to feel resentment toward my poor Mom but rather toward the whole terrible situation of Mom's decline, or the people I felt that had not done their jobs properly all along this experience. I admit though that I often felt like I was thrown against a wall daily with the constant issues that came up. I felt that this awful state my Mom was in would never end.
I began to take things one day at a time only and tried to make things as nice for my Mom in her room as I could with music, flowers, magazines, a TV etc. In the end she didn't really respond to much but always asked for the music. I began to approach the entire caregiving experience as a learning situation and did much research on natural remedies and care. This is how I got through the roughest experience of my life...approach it as a learning experience and just handling each thing as it came up.
Along with the day to day approach, I would recommend taking short breaks for yourself, if even for a few minutes. The short breaks add up. I had a
'sanity" basket too, in which I kept books, a diary, and adult coloring books for when Mom was napping and the naps became longer and more frequent at the end where she was sleeping constantly. The ageing and caregiving process goes in stages and modes.. often.from just needing errands to completely bedridden and sleeping all the time. Things did get a little easier when hospice came on board and the unrealistic pressures for rehab were gone. I miss my Mom but not the rough health problems she had to endure and I had to deal with. I know she would want me to carry on now and be strong, so I am trying. It is still early days for me.
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MooMoo, you touch my heart with what you wrote. Thank you.
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This article is so true. I started care giving when my 3rd child was 2 months old. I was 36 years old. I could write a book. My kids only know me as Mom and caregiver. We had Dad at home for 9years and then 4 years in a nursing home before he passed. He had a stroke, cancer and diabetis. He needed total care, therapy and radiation. My mom has lived with us for 8 years and before that I had to go to her house everyday to help and of course this meant all transportation, shopping, and yard work and cleaning. She has had both hips replaced, a knee replaced, diabetic, triple bypass heart surgery, at the same time my husband had cancer surgery, gallbladder surgery and a mastectomy that also had a drain for a year. She has a Foley catheter and needs help with everything. Today is her 93 rd birthday and I just tucked her into bed. She looked lovely today and some family were able to come to see her she can't hear well and hates her hearing aides but she had a lovely day. What makes this journey difficult is trying to afford any respite. I can't take a walk, simple things. This year I have gained weight and I hate it, my own fault. My mother would be gone if I hadn't taken care of her. There is no right answer. I try to remember my blessings and not the times I could run away. This site lets us know we are not alone and we certainly feel that way sometimes when everybody talks about what they are doing and what movie they saw. God bless you friends I am thinking of you. Hugs
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I have taken care of my dad for 6 years before he died. I have taken care of my mom for 20 years living with my husband and me & that sure restricted our lives. My husband is now disabled as well. My mom is now 100 years old and this last June she needed more care than I could provide so she is in a nursing home. She is legally blind and cannot hear much so one of us goes everyday to spend a little time with her and to make sure we are ok with her care. I relate to those that have shared and how hard it is to give up our lives to care for loved ones. I have cried many tears for their need of care. They don't want to be in that position. I have also had many times of feeling very sorry for myself. For me, my faith and love for God is how I get through each day. I am a Christian and Christ's sacrifice for me gives me the strength and willingness to be obedient to Him and care for my loved ones. Nothing is easy but with God it makes it not so hard. I don't pretend to understand your particular circumstances but I have lived similar experiences and I hope this will help someone get through being their loved ones caregiver.
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