I'm hating the role as a caregiver. Any advice?

How people feel depends much on the personality of the care receiver, their relationship when the caregiver was a child, and the length of time someone needs care. If a parent is an angel and a great parent, then it doesn't wear as heavily on caregivers to be with them for a few years. However, if the parent was a neglectful or abusive parent who still treats a caregiver poorly, then it gets old fast. We tend to lay blame on the caregiver because the care receiver is old. Many times it is not the caregiver who is at fault. They can give years of their lives, only to be mistreated by the parent and criticized if they try to protect themselves. I've not seen this in families where parents love and respect their children.

I moved across the country as soon as it was clear my Mom needed me.

We have always been very close. We always talked a couple times a week..very often more. I know her feelings were very strong against going into a nursing home....she saw how awful it was for her Mom.

So...once I arrived...I discovered my Dad was in even worse shape...and advanced dementia too.

I never gave it a second thought. I was surprise to learn my brother would be no help at all. All he wanted was money.

So, I admit it was hard dealing with my Dad. But to my great surprise, when I started make plans to put him in a nursing home because it had gotten so bad...he suddenly died.

My mother survived him by only 10 months. She was always a dear, sweet, easy going. A pleasure to be around. That did not change. But..the TIA stole everything from her. She stopped being the Mom I knew. Sharp wit, wonderful sense of adventure, all gone. But..I never for a minute regretted living those final years with her.

The people who manage to carry it off without any worries are not as likely to post of course. I think lack of support is the biggest factor that leads to burnout, and just how much support and what kind is needed is something that varies according to our personalities and the type of care we have to give. Most of us here began caregiving with the best of intentions and an "I can do it" attitude, often the despair you read here is the result of caregiving that has gone on too long or has pushed us beyond out capabilities. If you read back far enough you will find evidence of my own spiral into total burnout and you may think I am a horrible person based on some of the things I wrote. The thing is, this is a safe place to come and scream, curse and cry, and even when our posts are full of venom you are really just seeing a tiny glimpse of our lives.

Cwillie, You've said all!

So, I think that "kids" who were neglected and/or abused, who caregive because they think, magically, that their abusive parent will begin to love them are almost always disappointed in their caregiving experience.

Kids whose parents have dementia/mental ilness that prevents them from appreciating the sacrifice that their child is making are similarly disappointed.

Kids who have a dysfunctional family relationship, in which one sibling has always been considered slow, less able and gets stuck with caregiving are often angry and resentful.

But there are often situations in which bringing an elderly, disabled parent into a private home is simply not the best idea. In a good care facility, your parent has medical supervision, socialization and on site access to services. For those of us who live in zones where there are hurricanes, tornados and awful snow, having a parent safe and sound in a facility with a generator can be a Godsend.

My life's philosophy has always been "no regrets".

While I didn't move my mother into my home and provide hands-on care as so many of the brave souls have done - as you see by their posts - I did dedicate six years of taking care of every detail of her life.

My own situation of having a sevearly disabled adult child living at home would have made it impossible to give either the care and attention they each needed - had my mother lived with us. But honestly- had it just been hubby and me I doubt if I would have moved my mother in. As it was, my mother was extremely difficult to deal with. Moms life practically became my whole life - I neglected myself, my husband and to an extent my son.

I was completely out of my depth - knowing little about dementia and being totally unable to draw any boundaries. I say with complete honesty, I was teetering on the edge of emotional and physical collapse when I found this site - and the good people here saved me.

So silver lining? Yes. I know without a doubt I did the very best I could for my mother. That every decision I made on her behalf was in her best interest. I treated my mother with love and respect until the very end.

Was I perfect? No. But - I did the very best that I could. And - for the rest of my life I can go forward knowing that - with no regrets.

Hi there,
I see you are care taking your dad who has mobility problems. I'm also guessing that you had a fairly normal, loving childhood and have a pretty good relationship with him now. Lucky you. I'd give anything to be in your situation.

My 94 year old mother is in stage 6-7 Alzheimer's. Our family history is that she "got caught" and they "had" to get married. Both were alcoholics, had bitter physical fights and divorced 5 years later. I'm an only child. (I'm happy no other child had to suffer in that family.) A kid was the last thing she wanted.

Mother was narcissistic and thought of herself first. Only the best and finest for her. She conducted herself like a queen. She never hugged and kissed me (thank God my dad did) and pushed me away when I wanted to hug her.

Fast forward 60 years. She can no longer afford the memory care home. She was falling a lot there anyway and broke her wrist. I have been taking care of her for 4 years but now she lives with us. On top of being completely confused, she is mean, screams frequently, is demanding, needs total assistance with everything (toileting, bathing, eating, dressing, medicines, walking, etc.). At lunch today she threw her sandwich at me, screaming and shaking her fists in my face.
Now, with our less than wonderful family history and her Alzheimer's and normal demanding attitude, do you think I'm singing about how wonderful it is to take care of her? It's easy to criticize our attitudes but, until you've walked a mile in our shoes, you can't really say how "bad" we are. All of us are doing the best we can.

thanks for your honest and open replies. cwillie... I hear what you are saying. I wasn't  addressing the posts of caregivers who are facing burn out or are having a hard time. Absolutely what the folks are here for. Support, advice and friendship. My surprise was reading how many felt that it was a mistake to bring your parent home to live with you.

outdoormelle, did someone tell you that bringing your father in is a terrible decision? I didn't see your post. Is there any reason that they thought it was a bad idea? Like he is abusive or can't attend to the activities of daily living? I don't know about others, but I usually restrain from saying anything about other people's affairs unless they say there is a problem. In other words, if you said you didn't want to do it, I would support you on that. If you said you did, I would support you on that, too.

Dear outdoormelle,

It is good of you to bring your dad home. Everyone is so different. I think for some people there is some regret in letting an elderly parent move in. I think we all start out with the best intentions and then our parent's needs escalate and this can be increasingly stressful.

For myself, as the oldest of my sibling group, I have always been the default caregiver in my family. My mother divorced my father and he had no one in our town. I don't regret living with my father or caring for him. But I do regret not getting more help. The lack of support and understanding from siblings lead to burnout, anger, resentment, depression...but I hope my dad knew I tried.

Outdoormelle,
I too am often shocked by the number of people that say "don't do it" when asking about bringing parents into their home. If I had it to do over, I would still do all the things I have done.

My mom was a decent parent, she worked a lot and was married 5 times so life was full of ups and downs but she did her best. I love my mom and she needs to be cared for and I will do my best for her.

I am blessed with a lot of support so maybe it is easier for me. I am the person that cares for her 24/7, but my husband stands by me and gives me occasional breaks. My children and grandchildren come and hang with me. One daughter is a speech pathologist, one is a nutritionist, a son in law is a doctor, all give support in their areas of expertise. Maybe I would feel different if I was all alone.

I am blessed by the privilege of caring for my mom. The good and the bad all are worth it. Yes, I am somewhat limited when it comes to going places and doing things, and the care is not always easy but there is a time and place for all things. While my mom is on this Earth, I will care for her.

This is a safe place to vent. This forum has helped me keep my sanity -- and I share this website with everyone and anyone who is - or about to become - a caregiver. As a matter of fact, I think this is so helpful because it often lets you know the good, bad and ugly and allows you to get a baseline view of reality about your own situation. I thought I was THE ONLY ONE who felt the way I did, and then I found out it's just normal caregiver angst, or more seriously, burnout.
Seriously, move forward with best intentions and know this is a safe place on the days when things don't go to plan.

My next door neighbor's mother had moved in with her and required a lot of care. She was incontinent, refused to take baths, cursed her daughter and was generally difficult. My neighbor and I compared notes often and her situation made mine look easy. But then her mother fell, began to decline even more and then was gone. Although my friend had complained, she now says she misses her every day. I had thought I would feel relief on the day my mother doesn't wake up but I am taking my friend's words to heart and know that no matter how difficult I perceive it to be, it is so much better than not having her with me. Know that you have to trust your heart, make the best decision you can, and cut yourself slack on the days it isn't so great because in the end, you will be able to look back and be glad you were there for your dad

Gosh. This is a tough one. There is not one perfect answer. If you and/or your dad have the money to hire lots of help, I think you will find caregiving much easier and you will continue to not understand those who say "don't do it." Without money, you have to figure out everything, do everything, and be there for everything. Money brings with it a lot of freedom, control, and normalcy.

How big is your house?
Will your dad have his own bathroom?
Is your house aging-in-place friendly?

There are so many things to consider. I think that one of the reasons why so many of us do not want our parents living in our homes is because we know we will always be children in their eyes and, even in our own homes, we allow them to rule the roost. This does cause resentment. This does pressure relationships. This does change the dynamics of marriages. This does affect young children. It's not an easy decision!

I think many of us go into it with the best intentions, and we often expect help from siblings and our own families. Good hired help isn't cheap and sometimes not reliable. It's a very huge commitment, and my regret is that I'm just not up to it all by myself and the resentment that I still have bc my siblings refused to help and now even to visit him in MC. And when I visit (I'm trying now to back off from going daily), he asks about them or has me check his phone, bc he's sure they've tried to call -- and they haven't.

After living with my mother for 46 out of my 56 years., yes 10 years without her when I married at 23, and was out of state for 10 years. , I will never ever live with my daughter. What people posted here is 100 percent correct. Marriage dynamics change. Parenting your own child is never easy with grandma piping in every time a time out is necessary. And it goes on as your child's life does. Always hearing their opinions on what you should do At this point , it's just the norm. My mom didn't have dementia when we decided to move in together when I was 33. She does now. I'm an only, so is my daughter. After living this life , the best thing I can do for my daughter is to never expect from her what was from me.

You are probably right, outdoormelle, that the majority of responses to questions about moving a parent in with you are DON'T DO IT! Keep in mind that isn't the same as the majority of people in the US who have taken in a parent. A forum like this naturally attracts people who have some issues with the caregiving role. And sometimes they are just venting on a bad day. "Why did I ever get myself into this?!" But they may post next week what a good day they had with Dad at the children's museum.

I often respond with "Don't do it!" -- not because of bad personal experience, but because I see red flags in the post. These include:
1. Doing it because they "have to" and there is "no one else who can do it."
2. Doing it to have one last chance to earn the love of a neglectful or abusive parent
3 Doing it when the parent is mentally ill (other than dementia.) The mentally ill deserve good care and love too, but very few of us can effectively handle a narcissist or someone with bipolar disorder. We can love them, and see to it they are getting good care from professionals.
4. Doing it when the caregiver is mentally ill. Someone with active major depressive disorder and/or anxiety attacks, etc. probably shouldn't take on the care of another adult.
5. Doing it when the caregiver has serious health problems.
6. Doing it if it will be very disruptive to other family members. If a teenager has to give up his room and go bunk with his much younger brother, or sleep on the couch, that might not work out so well.

None of these red flags applied in my family, so when a newly-retired sister offered to take our mom in, the rest of us were thrilled. It lasted 14 months, and that sister's main regret was that mom's health worsened to the point she needed skilled nursing care. Not one of Sis's three brothers or three sisters ever said one negative word about the job she was doing. Most of us frequently said supportive things. Two of us each took Mom into our homes for a long weekend every month, and another went to her house so Sis and her husband could continue their bowling league. Sis's husband was supportive and helpful. And, probably most important of all, our mom was a sweetheart, while we were growing up, and in her old age. Even dementia didn't tarnish that.

If there are no red flags, here are some things I think can help the move-in be successful:
1) Right from the very start, plan for regular respite. If there is no family available or willing to provide this, then put paying for it in the budget. No one can care for another adult 24/7/365 and retain their sanity. No one. Make sure the parent understands that is part of the deal. He doesn't always get to go everywhere with you.
2) Connect with people who say supportive things. Join a caregiver support group. Come to AgingCare often.
3) Avoid people who are consistently negative or critical of your caregiving (or anything else about you or your parent).
4) Get household help! Start with routine chores, to compensate for the time your parent will need. Nearly anyone can mop your kitchen or do the laundry. Only you can sooth Dad when he is upset.
5) Get healthcare help! Maybe a bathing helper. Maybe someone to come in a few hours a couple days of week. Maybe a daycare program a day or two a week. Don't think you are only successful if you do it all yourself!
6) Realize from the very beginning that this may not last for the rest of Dad's life. We can't predict the future. Do not promise that you will never put him in a home. Promise you will never abandon him and will always see that he gets the care he needs.

Oh, and did I mention Plan For Respite?

Please come back and let us know how this goes for you. Complain when you need to, but share the good part of caregiving, too. This site could use a little more of that!

One more thing to add to Jeannegibbs' list, use your parent's money to pay for their care (and that includes paying you).
We hear again and again from people who cared for their parents for years, even decades, only to have the promised inheritance split equally with non caregiving siblings or gobbled up by medicaid. People give up jobs, renovate their homes, and hire in extra care all on their own dime while mom & dad bank their pensions and leave their savings untouched, and that is just wrong.

i dont have a single regret in moving back in my parents home to help care for my dad. He has always been a great dad loving supportive and can still crack a joke. he has had over 14 heart attacks in the last 23 years. he had his first one when my son was exactly one month old july,24 1994..10 years ago i got married and moved away about 30-45 mins away so i could get to them quick in case of emergency. he was in and out of the hospital with heart attack and having a defibrillator put in and then 5 years later had that one replaced with one that worked better.My marriage was failing badly and my dads health was declining fast and my mom was doing her best to do for him on hospice at home.He was very vocal about not wanting to ever be put in a nursing home so we are honoring his wishes and he still at home. me and my husband seperated and i moved back home to help my mom take care of my dad.i dont regret a second. my dad has always and still is the best dad loving cares about everyone even tho he is so ill.my grown son still loves with them and works full time and does half the errans for them and i do the cleaning , clothes, other errans. i take my mom to her doctor appointment. she has COPD so she needs some help too. i still have not so good days where i am sad or little angry or depressed but i do not take it out on any of them.i find time to myself when i can to focus and get myself back together.i do all of this out of love respect for my great parents. and no i dont get any money from it.

Outdoormillie, I'm a little disheartened by your comment. It seems that you need to walk in some of these caregivers shoes for awhile. What do you mean save for financial concerns? I have only had my mom for four years and she is really no problem, but I am tired of having her in my home. Not "my mom", but this other woman who sits and stares out the window and won't allow me in her world. We take care of her to the best of our ability and plan not to put her in a nursing home unless an accident or ? happens.
I pray for my fellow caregivers that have done care for their loved ones in ways I hope I do not have to face.
I hope I have just misunderstood your comment.

You have all given such great insight and I dearly appreciate your time. I know it is a large step for my family to bring my dad in and as well as we get along... I know it won't be easy. I want to be as informed and 'prepared' as I can be. Patticake2... and others who may feel that I am judging you as bad... that was far from my intent in the message. I don't walk in anyone else's shoes. I just want to make mine as comfortable as possible and learn from others. The financial concerns I mentioned was wondering if folks felt they had to take a parent because there was no other way to make it work financially. If anyone took offense... sorry. That wasn't my intention

I didn't take offense. I understood what you meant. Elder facilities are very expensive and many people do not have enough to pay for several years.

Are you married and have family at home, outdoormelle? How they feel would be a big concern. I was recently separated from my ex when I moved in. My parents did not want to leave their house, so I was the ideal solution for them. My parents are difficult, so it wasn't the ideal situation for me, but I've tried to make it through. I've been here almost eight years. Tonight my mother told me that she was worried about what I was going to do when she died. She kept on about it until it was a bit irritating. I think she felt guilty taking such a large part of my life. I knew her worrying was too late, though. That ship sailed a long time ago when I tried to get them into AL. She is nearing death and can't live alone, so we are where we are. Elder care can consume so much of your life, so needs to be given a lot of consideration.

Sorry Melle,
I guess I took your post as a "hit" on people who express negative feelings about bringing their needy/ill/Alzheimer's parents to live with them. You hit a nerve and I had a knee-jerk response. I apologize because, from your second post, I can see that is not what you meant.

I think the Pros would be that you will have much more close time together, especially to capture stories from his past (that will die with him). Your children will also have the benefit of being exposed to their gramps and that's usually good for kids. Board games would be a family activity that all can do. Or, maybe the kids could show grandpa how an IPhone 6, 7 or 8 works.

If he's of sound mind (lucky you!) he can probably be a great help in small ways around the house, since he has many years experience fixing things and can tighten all your frying pan handle screws or sharpen all your knives.

You'll have great photos/videos and memories at holiday time, which will turn priceless when he's gone.

Maybe you and he will be lucky enough to see progress with his mobility through Physical Therapy or alternative modalities. It's awesome to be part of the recuperation team!

As you mentioned, it's only fair you are compensated monetarily to pay for the things he needs and uses. You have every right to charge him as it increases your costs.

In my case, we had to hire a night time caregiver so I can work 2 days a week and hubs and I can get some sleep without having to get up 1-4 times a night. This costs 25% of Mom's S.S. Then the bibs, the incontinent pads, diapers, kotex, wipes, extra laundry soap, softener and dryer sheets to wash the "tinkle leaks" add to the grocery bill. Recently I've had to update her wardrobe, as most of her clothes were very old and are now in disrepair. She has doctor visit copayments and medication copayments. She has kept her hair cut and colored, so that will be an expense every 6-8 weeks. The increase in food (she eats 3 good meals a day plus snacks) and increase in electricity for space heaters and electric blankets in the winter and ceiling fans and floor fans n the summer needs to be factored in.
As you can see, we are not "getting rich" off of this caregiving adventure. There is not much left. That's why I had to go back to work 2 days a week, just to make sure we have enough for our bills.

You will most probably have many a great day shared with your dad. Try to keep him as independent as possible. Make sure he has a few things he enjoys in your home (favorite car magazines, his favorite soda or tea, snacks/treats etc.) to make him feel welcome. Make sure he has his own space for his things that won't be moved.

Good luck and I'm sure it'll work out in your situation.

A lot of good feedback here! It's rough. That's the truth. No matter if your parent was a good one or bad one, dementia can completely change them into someone you don't recognize anymore. That is rough! Watching them everyday becoming more helpless, more forgetful, more dependent, more demanding, is not for the faint of heart. You can never predict how things will go and yes, many of us did this because,
A) We had the best intentions
B) Had no idea what we had really signed up for
C) Parent had requested we be the "chosen one" out of our siblings (DPOA and POA)
D) We felt we owed them for all they did for us growing up

The problem is nobody can forsee the toll it will take long term if it is long term. Some dementia's are slow movers, the parent can go on for quite a while. Then it becomes clear they are not safe alone so you end up sacrificing your career so your parent won't go broke paying for a facility or in home care. Your siblings sling mud because you were the "chosen one" and they have no idea how lucky they really are! It takes a huge toll on you mentally, physically, financially, and stress in all your relationships, spouse, friends, siblings and of course, your parent. Your freedoms get taken away one by one. Hard not to eventually start to feel resentful. Watching life pass you by in your last somewhat youthful years is rough. No vacations, on call 24/7, even Mother Theresa must of had some days she was praying with all her might for strength. You can have the best intentions in the world, but nothing can prepare you for reality. Reality for me is she would have been flat broke by now had I not stepped up and let my brothers shove her in a facility. I have no doubt I did the right thing but it comes with a heavy pricetag. I wish you all the best. *Hugs*

Rainey69 Sure liked your answer. I know this is probably saying the same thing, but I really wanted to be the one to take care of my mom. I knew since I was the reliable child that it would fall into my hands. Now that it is happening and I watch my mother decline I also find old feelings of mine surfacing. I feel so bad somedays that I wish mom was somewhere else. I don't like me and I don't like her. My daughter says I'll feel sorry for my attitude when mom dies. My mom and I had a good relationship as long as I was the underdog (in an abusive marriage) and she was not. Now that I am doing well it seems she resents me. Maybe I'm wrong, but I don't think so since my family sees it too. Thanks ladies for listening.

I do it because my mother literally does not trust any other person on earth. I do not necessarily take that view of other people, but I am a very different person from my mother, and I also haven't had the same negative life experiences. At some point I decided she's been through enough. The last thing I want to do with her trust is turn her over to a bunch of strangers in a strange place for her most intimate care needs.

I dunno if that's a positive or not.

Hi Patticake. Have no clue how old your daughter is. But mine is her early 20’s. She can be really hard on me To the point where I’m distancing myself. I don’t need another critic. Help me , spot me, don’t judge. Come spend a night here. Just give me a little break. The response I get is more gut wrenching. So I get it. It’s on me all on me and as Elton said I’m still standing

Hey Patti,
I know the feeling of "I don't like me and I don't like her." Caring for a parent who turns into someone you no longer recognize is hard to come to grips with (especially if there is a checkered history) and it turns us into irritable cranks that we were not used to being "that person." Tonight for example, I made a lovely dinner and went to see how she enjoyed it and she starts on how she needs her broken watch fixed, and how to get the "missed call" message off her phone, (I have written 4 seperate notes on how to get and clear messages on her phone with childlike simplicity) and have asked her to follow my directions without my interference and she can read and understand them and she manages to get through it without a hitch. Yet................she asks me how to do this ALL THE TIME. Lazy? Manipulative? Whatever it is, it drives me nuts.
She has clocks all over the house but her wrist watch I went through hell and back finding one that met all her criteria, is now worn out because she never takes it off. She does not NEED one and I told her I was not going through "the hunt" to 10 different department stores again to find the perfect wrist watch just because, as she say's, "I've always worn one." Now, I hear about it over and over and over about how can I fix her broken down, worn off finish watch. I bought her two lovely necklace watches that are easier to take off and on, she won't let go of the wrist watch. *Sighs* She wears me down. She fixates. She lives like a queen, has every need taken care of yet she constantly focuses on what she is running out of or wants instead of all she has. It never ends. It has turned me into a cranky, moody woman because I feel like I am her "go fer" gal instead of her daughter appreciating all I have sacrificed for her already to make sure she is living in a lovely home with every thought put into her space so she is happy.
It's never enough and she has become a passive aggressive, world class nag.
I know this is the dementia turning her into someone I have a hard time recognizing but it's still a tough pill to swallow everyday. She had a couple pair pants she loved and wore them to tatters. I begged her to throw them out, but she argued they were her favorites and went on and on about how she wished she could find duplicates. I heard about this constantly for years and searched like crazy for something comparitive and did find some very nice replacements. Not good enough. I finally got so fed up hearing about them I sought out someone to duplicate them for her "custom made." See the pattern? No matter how I try to ignore or find something comparable, she never stops mentioning it until she gets her way. Yes, I have become someone I don't like and I don't like who she has become either.
Sorry for the long rant, but this is part of, nothing can prepare you for what your getting into until your in it. This is now part of my daily reality caring for Mom.
Thanks for listening.

I started caregiving for my mom because I am literally the only person on earth she trusts. And also I didn't know how bad the dementia was but I thought I could handle it. My dad also had dementia, but my stepmom did most of the caregiving and I was her relief person, and he was sweet and lovely! Completely the opposite of my mom. Which makes sense why they divorced! Lol. But yeah, my dad was sweet, and although it was a lot of work for my stepmom, we handled it, so sometimes it can be ok.

My daughter is 47 and a great daughter except for these comments. She comes and spends time with mom each week playing scrabble or just visiting. She tries to pull family in for mom, but most relatives are in their own problems or just don't care.
I am moving mom from my dining room (we don't have a downstairs bedroom) this month. I've had mom down here for four years and when we have get togethers everyone is crammed into my breakfast nook. Imagine 9 to 22 big people being in this place, ha! Mom just sits on her throne and reminds me how easy she is to care for and aren't I lucky to be able to move all my furniture around. (I weight lift for a stress release). Doesn't dawn on her how much a problem it creates SOOOO I am moving her to my sewing room (yes that means storing all my stuff) that is upstairs. I cringe that I'll hear her even more and we will have even less privacy, but I don't know what else to do.
All I want is to enjoy a meal without all the furniture moving. Last year I transformed my heated garage into a dining room. I went all out to even disguising the garage door to look like a fireplace setting area. I scrubbed and waxed the floor, etc. I DON'T want to do that again. I'm tired of all this and I feel like a selfish person for being this way. I have so much and my mom is way easier than so very many parents. I'm just selfish. Thank you so much for being there for me my friends.