Leaving after caregiving for 16 months. Has anyone else left?

Don't beat yourself up. Not everyone is cut out for this. They don't teach you how to take care of dementia,and a human that can no longer care for themselves in school.Good intentions are often not enough and you have children. Keep coming to this site and start asking specific questions.People on here can help you start to contact the help your parents need. You have children and the must come first.If there are any VA benefits start there , if they need an aide to come in every day.There is help out there. So many times I feel like running away but my mother lives in my home.But please don't feel bad. Read some of the stories here and you will find plenty of people tried but realized they were in over their heads.

I think it's better that you get out now than to hang in there for years, resenting your situation and being miserable.

You did the right thing.

I plan to leave. I dont have the courage that you do...

I am right there with you Emily. After a year of complete 24 hour a day care of my dad who no longer can walk, I am contemplating how to leave. I now believe there comes a time for many of us caregivers of elderly parents that it does become too much. And living in their home instead of bringing them into ours does really skew the dynamic of the parent child relationship. I will bet you will have a better relationship with your parents living apart from them. And you of course have a previous commitment to your children that is very important. Many times you just can't do it all. Take care of yourself.

In my case, Im the one with no place to go. I enjoy my job but it does not pay enough for me to afford rent in the area which I live.
Living with Dad does have the perk of my children being in a beautiful home, nice quiet neighborhood. Its certainly alot different from what my children are used to. So my father feels like since Im not paying rent, I "owe" him by being his personal servant.

Emily25069. Don't feel bad. It must really be hard when you have children. I don't, but am married and have been care giving all the nine years that we've been married, not to mention we care gave for my mom for five years before she passed from breast cancer. She was so strong and positive even knowing she wasn't going to be here much longer. Dad on the other hand is a needy pity party type of guy. I have wanted to run many times but promised myself to keep him home until hospice can help me in my home. I spent hours trying to get help, but dad needs assistance getting up and moving to the bathroom, etc. I was told that a companion can't be hands on and I need an RN or LPN for insurance to cover it or it is self pay. I had to quit my 2 day part time job because it would cost at least $200 a day to have a nurse and in the 2 days I work, I didn't even clear $200 so it made sense for me to quit until the day comes that he can't bathe by himself. He has a great benefit pkg so medicaid is not an option. I do have a CNA friend that will help when my hubby and I need to go have some fun so that helps. The hardest part is watching him go downhill slowly. He says I hope this never happens to you and I spend many nights crying for him. It's hard. But here I stay. Don't feel bad. This job is not for everyone. It is the hardest thing I've ever done. Get your space and take care of your family and don't feel guilty. Hugs to you. Hang in there!

Bravo for you! What courage you have. Don't let anyone guilt you into thinking otherwise. Do whatyou can from your own home but also delegate and get help for the majority of it. Your new role is now manager -- you've been promoted.

1. Don't feel guilty. Most of us on this sight know people who wouldn't even try. That you did indicates you are a loving, caring person. It's OK to accept your limitations. 2. Your husband and children are your first legal and moral responsibility. Put the before your folks. 3. Make a plan. Call senior services and ask for an assessment to determine your parents needs. SS is a good place to start looking for services to meet those needs.
Finally, let yourself off the hook. What you are doing is reasonable. I'm willing to bet you haven't thought just about yourself in sometime with so many people needing you. Please use this change of situation to put yourself into your caregiving plans so you don't find yourself in such a dire place again. I hope things get better for you soon.

I dont blame you texar. I leave in my own place and take care of my mom from I live. I a;so take care of my son who has disabilities. I couldnt live in with my mom. She lives 12 minutes away. Dont feel quilty okay.

My mother's sister moved in with us 6 years ago after a mild stroke prevented her from driving. I got her to good doctors who put her on good medicines and at almost 82 she is better off than when she moved in here. Horrible to say but I resent her because the entire time my mother was dying of cancer she never once went to see her and didn't attend her funeral.

I am 68 and my husband is 73 and yet our home is no longer OUR home. Every time someone calls me or my daughter or grand daughters come to visit me, we can't talk because she has to come in and listen to our conversations. She lived by herself for 30 years because she didn't like being around people...... My husband and I can't even have a private conversation behind closed doors because she has "bat ears" and can hear EVERY thing. She doesn't have enough money to live in assisted living or a nursing home but has too much money to qualify for aid. I shouldn't feel this way as she does try to help and she does help pay bills BUT...these were "supposed" to be our "Golden years" and I just feel STUCK!!

I agree, don't feel bad, you have done wonderful and will continue doing wonderful from your own home. Its not easy caregiving no matter a persons situation, and your caregiving for both parents! You are aware what you can handle, your kids and hubby needs you as well as you need you! 6 kids and a hubby, two parents, live in, I couldnt even imagine. You have your hands full!

You asked if anyone left caregiving... I was part time caregiver for my grandfather, but it turned to full and I was hardly home, even felt weird walking into my home.... I felt like a stranger. I was told by some to stop full time ( up to 20 hours some days) and go back to part.Worry about my kids, me , my dad too. I have been going down less and it hurts me to know hes there alone but he refuses to hire more care ( we have one person a couple hours..2x week) I have so much guilt but I need a job, my kids need me and have functions, they only have them once certain things...( as you know) and my failing dad needs me as well, I hardly sleep and my house needs to be cleaned! I am fighting with myself constantly, but you did the right thing, and if you can, I can.

Your parents will be ok, so will you and your family. You sound strong and its ok :) Hugs

Dearest daughter, adult child. You have done your duty above and beyond what we all perceive was your duty. I have witnessed 99% of children who move in with or take parents in to their home having all the same difficulties and heartaches. It's not mandatory to try care this way, but many are guilt ridden into trying. Congratulations on 16 months. Enough is enough to try something that doesn't have much of a possibility for success and isn't working anymore for you..
Terie Novak - author ebook "Bold Actions for Helping older Parents"

Emily you don't say what kind of care your father needs. Have his doctor refer him to a social worker to assess his care needs. It sounds like he might need memory care, and maybe that is covered by his insurance. Or, his in home needs might be met by visiting home RN, housekeeper, meals on wheels. Then you can organize the helpers, but not be the helper. He will complain, too bad. The doctor will have written orders for this, you must follow the doctors orders. Get power of attorney, and let caregivers know only you (not your father) and "fire" them.

Studies have shown significant losses in intellectual functioning for caregivers by 18 months. You are not a whimp. It is better to have him set up some place now so he can make a couple friends, become familiar with the place and people before he become totally confused.

Take care of yourself first, then your children, then your husband and after all of that, your dad. I don't forsee all that much time or energy left over by the time you work your way through those priorities. And that's ok. There are lots of folks aging without family, and agencies to help.

Everyone has a right to their own life. Don't feel guilty. Leave. Do your best to help, but the day will come when they will die just like everyone else.

I quit my job to stay full time with my mother and I can't take the way she treats me. We have lived together for 5 years and got along great until she has been diagnosed with early dementia. I feel us being together 24/7 and related makes a difference. We always treat relatives different than strangers.

Emily, don't EVER feel guilty for doing what you need to do. I took care of my dad's needs for 21 years after my mom passed. The past 11 years I took care of his homes, cars, home repairs, finances, meals, shopping, doctor appointments, clothing, laundry, but did not live with him. Last year after his Alzheimer's and Dementia got much worse, after breaking his hip, I had to leave my job and my home and move in with him full time. Many people FORGET that the care-giver child is ALSO close to being their own senior citizen...I am almost 60...with our own health problems and concerns, that we tire easily, we ache, we hurt, and we are at the point in our lives that WE need someone helping us part time. I tried taking care of my dad full time in his home since last year, but his personality is not the nice kind, and I was on call 19 hours a day, in the middle of the night, with never one second of time to myself except when he was sleeping. And I mean not one second...with him beating the bathroom door and screaming at me while I'm in the bathroom because I was not paying attention to HIM and doing everything he wanted me to do. Yes, I broke my promise to always take care of him at home. Yes, I broke my promise to never put him in a nursing home. And yes, I feel guilty...somewhat. We can't do it all. We can't be the chef, house keeper, laundress, chauffeur, yard guy, banker, friend, entertainer, sitter, shopping, doctor, nurse, and more...well, we can, but not for long. It's okay to feel guilty, that's normal, but it is OKAY to feel that way. Take care of you. If your parent needs full time 24 7 care, like my dad does, he can't be left alone for 2 seconds when in his home, make other arrangements. But take care of YOU. I don't know what stage of need your parent is in, but my dad is almost 90, wheelchair bound, and late stages of Alz, and is a terror and no short term memory so can't be left alone in a home setting. Even tho the cost of keeping him in a nursing home is horrendous, it is better than me collapsing from heart complications. After he was admitted to the nursing home, I collapsed from fatigue and heart problems and was admitted for over a week. I pushed myself so hard from taking care of HIM that I ignored my own health problems and am now facing open heart surgery.

Has anyone left or kicked an elderly parent out after taking on the committment? Taking on the responsibility of an elderly parent is a huge decision and not for everyone. Yet, using the terminology of the first question sounds so cruel. Why not make sure they are in a safe environment?

How old are your kids? When my grandmother was left alone after my grandfather's death my cousins, who lived just a few blocks away spent every night with my grandmother. They were between 12 & 18 yo. She was not demented nor did she have any mental disabilities. She was just plain ornery. I spent summers with her from 10 yo - 15 yo. If you could have kids spend the night, come over on weekends or anything like that it would help a lot. I really wish for a 10yo or 12yo to come be company to my mother, but my kids are grown and won't help. My older grand-daughter-in law comes in 1 - 2 afternoons weekly at $15 per hour. She is a CNA. My lawn maintenance guy comes in & helps with meals & companionship sometimes so help may come from strange source.

j

I don't do much actual caretaking. I handle all of dads pills. My mom does most of the rest. Every once in a while I do a little more, but really, I just take care of their house.

What I am really here for is back up and support for my mom. She has some limitations as well. Neither one of them can clean their house or take care of their yard. If dad falls, most of the time we are here to help. he has fallen a total of twice in the last 16 months, so its not a huge concern.

My mom is a diabetic though, and she is forgetful sometimes. She leaves her pills out often, and I have a 2 year old. A few weeks back, my two year old got into her pills and jammed some in his mouth. Thankfully, they were not dangerous. But while I had poison control on the phone with me, I went through both mom and dads pill lists with them, and there are 2 that my mother takes that could kill my 2 year old with just one pill. The incident of him getting into those pills shook me enough to decide to leave.

My mom is absolutely heartbroken. She is afraid of being lonely. My dad was never much of a talker, but with the Parkinsons disease, he really isn't a talker and often has no idea what he is talking about. My mom is very afraid of living alone with him, and I can understand why. I really can. It can't be easy for her. But I can't continue to live here because it is just really hard to raise your family with your mom right.there.all.the.time.

Keeping my kids quiet enough to live with elderly folks (remember, there are SIX of them) and raising them according to my own rules which they think are sometimes silly or bad is hard. If my 2 year old wrecks something, its not just my something they have wrecked. Its moms lamp or dads entertainment center or dining room chairs. I don't allow my children to wreck stuff, but as there are many of them and I can't be in all places at all times, it has happened. And its beyond stressful. My kids are in the prime of their childhoods and I feel badly about letting them have friends over (more noise for grandma and grandpa to deal with. I let my 11 year old have 3 friends over for a birthday, and it was upsetting to my father because they were all boys and boys that age are loud)..

I just feel like I can't live my life here. I feel like my kids can't live the life I wanted for them here.

It is a nice big house in a nice neighborhood. Our old house is small, but nice. We are moving back there. Its going to be quite the adjustment after being used to all of this space. But even all of this space isn't enough space when I am trying to keep everyone happy. My mom says she is happy because she doesn't want me to leave, but I can tell that this is all too much for her too. She is just more afraid of the loneliness than the noise.

Before we moved here, I homeschooled my children. I loved it. We had a good system going and had a beautiful pattern to our days. When we moved here, I had to send my kids to school. I found a WONDERFUL school to send them to and I had a new baby since we have been here, and it was nice to have time with just my baby and toddler while the kids were at school, but choosing to send them to school was not my choice. It was a huge life interruption for me. And I think my mom doesn't realize how big of a blow that was to me. I don't think she realizes what a sacrifice that was. It would be helpful if she knew and acknowledged it.

Anyhow, I plan on coming in 3 mornings a week for 3-4 hours to clean and chat with my mom. We hired lawn service this week. I'll handle my dads pills and hopefully take him to church on Saturday evenings. I'll bring them dinner sometimes too. But I just.cant.live.here.

Everyone understands this except for my mom, the one I need to understand this. And it really hurts me that I am hurting her. I hate it. It would be awesome if she could just see that this is really too much for me, but she doesn't understand why I think its too much, since she handles most of dads care and I am more here for backup.

Its definitely not the work thats too much. The work is easy. Its the living with my parents while trying to raise my own *big* family.

My husband and I are awesome as far as relationships go. We are one of the happiest couples I know, and I love him so much for doing this for my parents. But we have little romantic life now that we are here, because its just not sexy to live with your parents. Its quite the turn off actually. The pills and my love life are the two concrete things that gave me the courage to tell my mom we were leaving. Both are too important to ignore.

I just wish my mom understood. I hate that she doesn't.

The big question is what happens if my dad gets very sick again.

He was pretty sick when we brought him home from the skilled nursing center.

The answer for me is easy. It would be way too much. As much as I'd hate it, he would need assisted living.

If my kids were all grown, it might be a different story, but I do need to be there for them.

My kids are 11, 9, 7, 6, 2, and 5 months old.

kick out does sound harsh. I am sorry that I worded it that way. I was just being blunt.

Dusty?

Well, not exactly, but I did end the caregiving relationship. My MIL lived with us for 4 years; I quit my job to be her fulltime caregiver. The first two years went quite well, and we were able to get out of the fall-injury-hospital-rehab cycle she had been caught up in (the reason she moved into our home). However, as was inevitable, her health began to decline significantly. As the burden of caregiving increased, so did mine.

MIL was receiving hospice care, and began to consider discontinuing some of her drugs, but decided against doing so. I was having significant trouble with my knees, which compromised my ability to care for her safely. My husband and I talked to her about her moving in with her daughter. She did not want relocate, saying, "You're kicking out an 89-year-old woman." She then agreed to discontinue her heart medications if we would allow her to stay with us.

After having made that agreement, the trouble with my knees worsened significantly, and surgery for bilateral knee replacements was scheduled. Since it was impossible for me to care for MIL while I was rehabbing both knees, she ended up moving in with her daughter, after all. She died one month later. So, I felt somewhat like you--that I was not living up to my commitment--but caregiving really had become more than I could handle.

I understand the difficulty of dilemma, but really, who benefits if you sacrifice your own health and sanity, in addition to your young family, for your elderly parent? No one.

I wrote a book about caregiving: What to Do about Mama? by Barbara G. Matthews and Barbara Trainin Blank. I think it might be of help to you.

Gosh wish i could live away from mum but like toomuch4me am "trapped" just be grateful that you have a choice and can still helpout and are not in a position where you have to stay. I cant do this for much longer i feel like my life is being slowly taken from me and no support from anyone. I long for the day i can visit mum like my sister and be her daughter again and not " a live in servant" that she feels i owe her!

I am sorry Kazzaa. I know that many folks here have it much worse than me here.

:(

I feel bad for you and your parents. Its got to be terrible for your mom. Any chances of buying a 2 family or hiring help for them? Oh god its so tough to get old, I put myself in your moms shoes and cringe. I put myself in your shoes with all those kids and cringe too. There has to be a happy medium. My moms been with my husband and I for 6 years now but our children are adults. I cannot even babysit my grandchildren or take them out without hiring someone. But.. thats what I do. Good luck.

Sherry1Anne, good idea IF the patient is not crude, crass, rude, nasty mouth person. My dad has a fondness (ahem keeping it nice here on the board) for young girls and can be downright filthy mouthed so having any grandkids around is a NO. But as long as there is no negative aspects, having the grands spend the day or the night is an excellent idea.

Thanks emily i wasnt saying your situation was easy its hard for anyone of us who just cant cope with this illness. You have alot of children and so young you have to put them first. My sister has 2 daughters 21yrs and 27yrs and tells me she cant help because she has children????? Go figure. I feel guilty everyday as i just dont want to be here and my mum was never an easy person before now shes impossible as much as i love her i cant look after her indefinetly every minute seems to be an argument shes as stubborn as a mule and gets nasty if she dosnt have it her way then she buys me things that i cant afford like clothes etc..then as soon as theres an arugment she will fling it in my face as how much she buys me. I used to feel guilty when shed buy me something but now i think i deserve it as im just constantly abused and manipulated.

I need to get my family together as she will have to go into a NH soon as her constant negativity is sucking the life out of me but its her house and if she wont go into a NH then what? she wont even get POA has all the docs fooled with her acting?