How do you deal with being a family caregiver?

I find myself getting mad with your family. I think we need a thread on adult children of narcissistic families. These are the families where everyone is too important except usually one child, who is used until there is nothing left of their self esteem. This child usually feels guilty if they try to have something for themselves. Still, he/she needs to do something for themselves, because the family is never going to let up. Their own needs are more important, so they continue to use the nice child.

Your aunt is only in her 50s. Does she make her living taking care of your grandfather? Or is she married and have some form of income herself? If she is unmarried and taking care of your grandfather, then basically you are being your aunt's caregiver. What would she do if your grandfather went into a facility? Would she then not have a place to go? Do you think this may be "influencing" the ability of your grandfather to qualify for state assistance?

Something feels all wrong about this situation and I can tell that you are fed up with it. I understand totally because I have a narcissistic family. They will pick your bones dry while talking like they care. Their actions speak louder than their words.

You're young. I think you would be a wonderful catch for someone looking to start a family. Give yourself a chance. I wish I could talk you out of that situation that you're in. I know how hard it is to break free, because you feel like there will be such a domino effect created by whatever you do. Maybe a baby step of finding an apartment nearby and letting your aunt know that you're stepping back, but will help on certain days at certain times. And no more money coming from you! You are not your aunt's husband or her slave. I have a feeling that she needs to get a life of her own. She's younger than most of the people here.

I hope you can unravel yourself from this. They are asking way too much of you. Don't give yourself away so easily. You're precious.

Hold on, and start planning your move! The worst thing for you is to live there. I experience the suicidal thoughts, too, but I/you have to believe it will get better. You would be better off moving into a friend's garage, or sleeping on a s ofa than living there. They have been dealing with those home health care needs long enough that they should have a better way to manage it. Getting an agency in there for 2 hours a day would be super beneficial, and may only cost $75-$100 a day. It's not your problem, so get out of there and think about you for a change. Once you move, do some online research about that MediCal program, to see what assistance may be available. Is anyone in the home a veteran? If so, look into those avenues, too. If they had room in the house for you, maybe they should take in a boarder, and apply that income towards some home health care.

Best answer:
I cannot possibly do that!

The ski season is just beginning, won't be home very much at all.

Rx
Go to Starbucks and/or the library for one hour after work, daily. Eat before you get home.
I am guessing that you report to your aunt everything, otherwise she would not hold so much power over you.
So, practice regaining self back by not reporting to her.

Here are some phrases: Won't be home for dinner, sure you can manage dinner.
Be home later, don't know when.

Left work late.

Don't have time to discuss this now, I'll get back to you on that.

I'm tired, we can talk tomorrow, goodnight.

Money is tight right now, we need to discuss paymenf for my services and a decrease in rent.

You need to bring in private-pay help for cooking and cleaning.

Will be gone all day for two days, get someone else to come in.

See ya later, aunty dearest, love you, bye! Be back soon.

Just remember, Aunt has Power of Attorney. She's the one responsible. NOT YOU!

Michael, Michael, Michael,

Listen to us. You need to get gone from this situation. YOU'RE giving your aunt money????
1. Find a place to live. Make arrangements to move.

2. Call APS and tell them that your family will need assistance with a vulnerable adult.

3. Make yourself an appointment with a therapist and start working on your issues so that you don't ever again fall into "looking for love in the wrong place".

You sound like a really nice and decent guy. But you are being taken advantage of. This mess won't get solved as long as you are there. You need to upset the balance by leaving.

You cannot continue the burden of caregiving. You will or already have experienced caregiving burnout! Seek out help.

Michael, establish boundaries, as long as you continue to respond to their needs they will continue to manipulate you to do what they want. Only you can break free. It will be hard for you and all involved. To cure aomething like this sometimes there is nothing better than a healthy dose of reality. Stop enabling them.

Michael... make someone else the manager of the situation and back yourself out. If you don't do that now, you will be unable to in the future due to finances etc. Youve read many on here supporting your need to break free, but only you can do it, all the talking / reading in the world won't do anything. I am one of 4 children, I am the sole care giver of my mother.. the other 3, all live within 35 mins of her but ignore her care or my begging for help, both financially and time off... Ive lost my business, my home, my free life as I Knew it, they all know this and they could not care less...but my mother? is very well taken care of, has everything she wants or needs and has a roof over her head ... point being, get out before u go under.

Thank you all for responding and kind words. It definitely helps a lot knowing that there are people out there with similar experiences.

I will try to be thorough in answering some of the questions that were asked here.

First to Ferris - My grandfather is the one with Dementia and grandmother is the one with Alzheimer's. She's had it for as long as I have been born and is the one in a care home. She has been in a care home for around 15 years when my grandfather wasn't able to take care of her.

To Donna - Yes she relies on me 24/7. Gramps is almost 90 and aunt is well over 50. He's a heavy guy so I do a lot of the heavy lifting when I am around. This means as soon as I get off work I go straight home and go straight to caregiver mode. She's been having back issues that developed from the constant lifting of my grandfather over time. So she heavily relies on me as soon as I get home even though I'm already exhausted and tired. I also clean and cook and help out with giving baths weekly. Grandfather is unable to walk so everything we do is at bedside. He is unable to feed himself and unable to clean himself. I don't have time for myself anymore and rarely go out because I feel bad leaving when they need me. It's also gone to the point where she gets angry at me if I go out or want some time to myself. She treats me like a child sometimes when I am a fully grown adult. What she use to do by herself she doesn't do anymore because it has been convenient having me around to do a lot of what she does. Which has led me to become a very bitter person at home, at work and with people. I was never this way until I moved in here to help them. My dad does not want anything to do with them and I have a very strained relaitonship with my father because I've had a rough childhood but that's completely irrelevant to the topic. My siblings don't know what it's like to go through what I do everyday and I've given up seeking consolation from them because they simply cannot give me proper advice. My mental state has taken a lot of hits and my tolerance level is well above my limits. I tend to snap a lot more and be angry almost all the time. But despite all the BS I still find myself here because I love them. I don't know how to be a selfish person, I've always been selfless and put others first before me. I don't know what it's like to just take care of me and make sure that I am happy. I feel like I am obligated even though I'm not. But lately I've been ready to call it quits many times because I am not ready to give up my life just yet for their sake.

The financial situation is a bit weird. In order to afford grandmother's care, my grandfather while he was still ok used the house as a collateral and we pay a very affordable price than what it goes for normally. My grandfather also did a Reverse Mortgage on the house to get some money back because of my uncle's stupidity of using my grandfather's information to open loans, credit cards and etc. That story is such a mess too. So grandfather's money is going to paying grandmother's monthly care, repaying the bank, utilities, hoa fees, insurance, adult diapers, spool softeners, medication and so on. We've tried a few times in the past with a social worker to see what extra help we can give him but even though he doesn't make much he is ineligible for medical because he "makes too much". Aunt wanted to put him in a care home but it's way too expensive. I give her money every 2 weeks but now she's asking for more. I already also help my own mother with bills as well and its as if all my money goes to helping family and my bills. It's taken a big toll on me and feels as if I am starting to hate my life as time progresses.

He does qualify for hospice care but my aunt is being really stubborn and refuses to use it. We have had many argues over this and she's really an idiot. We need professionals and I can't keep going at this rate. She really wears me down and I fear it will get to a point where I will start regretting my words if she ever pushes my buttons.

I am not sure who is taking care of whom here but I think you need professional help in sorting this out and in finding some care for your father and grandfather, either is some ind of assisted living of in your home. also, who is responsible for paying the bills for grandfather - and father? What sources of income do they have - how far will it go? and what are the ages of grandfather and father? I would start with the County where you live. There is usually a department in the county that assists people in your situation. For sure, you cannot do this yourself - where is your life going? You may end up with a nervous breakdown if you try without professional help. Good luck and God Bless Luann30

It is necessary to take care of yourself. Give yourself a break. If you don't take care of yourself first you will not be able to take care of your loved ones. There is a great article on this site about burn out. I found it to be helpful. My mom just moved into assisted living about 6 weeks ago and for the past 5+ years I have been doing a lot for her and sometime feel as if I have no life of my own. It is OK to say 'NO' and do something for yourself that is fun and or relaxing. No one ever died of feeling guilty.. and please don't feel guilty for self-care.

To "b1c2d3... look into research about how many dementias are actually terminal. Then we can talk percentages and factual medical data.

To "Diannekk... no it doesn't mean to ship them off, for you. See, you have created your life to be alive for them... that's your choice.... it's your life. .. but when a person writes "is this load unfair, or I feel stuck, etc" then clearly that individual needs more in their life than to feed, cook, shop, clothe, bathe change underware etc of another adult 24/7. And it's those who feel they desire to live their own life rather than be years upon years without one, who then need to first understand they have every right to live their own life, and to second get their loved one into another care environment that will allow them their life back. You are doing what you want, when few would ever "want" that type of existence.

... Excellent comment & advice Jessie-belle.

BTW, I have a feeling there was just a catch in qualifying for assistance. I would let them figure it out and work things through. Not sacrificing your life is not the same as throwing someone under the bus. It is just making sure you don't end up under there yourself!

27 is too young to devote a life to caregiving. It is an age when a person needs to be having their own family and building a career. That is the most important thing.

It is great to be able to help, but we do have to use our brains. If a person requires help, how many lives are we willing to donate? One? Two? More? IMO if someone needs more than one caregiver, it is time to consider professional help in a facility.

I don't know where people's minds are sometimes. If we play a scenario through and say that someone put their life on hold when they were young and didn't get a career, get married, or have children. This goes on for many years, sometimes until the caregiver herself is older. Then here she is without any money, spouse, or children. There is no SS or pension in the future, so she has to find some kind of job just to make ends meet and to get 10 years in so she'll qualify for a small SS check.

My advice to a young person is to build their own family and career. There are too many options available to make such a huge sacrifice. Since grandmother is in a facility, I imagine that there is not a lot of assets left. I have a feeling that the family can qualify for MediCal assistance. I would get a state social worker involved to see what can be done.

I'm a family live-in caregiver, but I'm older and have retirement money. I would never recommend anyone do this if they are not established already. It would just mean poverty and loneliness down the line. Caregivers have to take care of themselves and help others as they can, but without harming themselves badly.

Well, true they have lived "their" lives, but what does that mean? Ship them over to the first nursing home? True, each situation is diffeten and it really depends on your personal convictuons. Do what you"ll be able to sleep with at night. In home care is a great option that helos so many, but like my mom and so many elders they just arent comfortable with strangers coming in their homes. It is a good option for many however and certainly worth a try. Every so iften my mom falls at night, and it scares me to death. Im afraid she will seriously get injured. But i dont want her to go to AL. Im not sure what to do, but need prayers now! Their are no easy awnsers when its your family. My mom is a huge part of my world. I just dont kniw what ill do if i ever lose her. Im use to being caregiver. I wont have a clue what to do then, besides raise my son. Just the thought makes me feel so lost

I would say Ferris is closer to correct than 1of4, because a neuro surgeon explained and showed me why my mother's dementia was terminal. And it wasn't Alzheimer's . It was FTD (frontal temporal dementia) and there is nothing that can be done to stop FTD, that's when something is "terminal"

My heart goes out to you, Michael. I'm caring for my mom long distance and getting very little help from any of my siblings but one, who stops by once a week. Moved Mom into assisted living this summer; her cognitive disorder (which is now the proper term to use rather than dementia) is mild, but will likely get worse. There are actually now 85-90 disorders under the umbrella term that used to be "dementia". The suggestions above are good ones, but none of them will take the pressure off you if other family members don't step up. I wish I had some brilliant advice to give you. I know that online social support only goes so far. I'm in the process of trying to change my job so that I can work completely online and move across several states to be there for my mom and my brother, who is severely disabled. Yes, you will be glad you helped care for them in the long run....

To "CarlaCB" what you've said is right on target. I get rather tired of hearing the "oh you're such a wonderful daughter, grand daughter, what ever, for sacrificing your life" you should do it, it's the right thing to do, etc"... so sick of hearing all of it. Most who think that way and say those things, are either older spinsters, older widows, or their married life is one of many years or are actually getting paid to do so in a career... so the "sacrifice has done nothing to their own "life ... you take a single or married person of any youth (65 and younger) one who has or needs or desires a self directed life (a free life) and for what ever reason under the sun make that person sole caregiver of another human being, it creates a prisoner of that person. They are no longer free. Caring 24/7 for an elder no matter any blood relation, is a screaching halt of a progressive and self directed life. Their hourly and daily needs become a sinking black hole of the caregivers life, their own needs are no longer fulfilled. Their finances are devestated, many times destroyed... their once connections and personal relationships disappear. The elder is their life now. This type of imprisonment is not ok. It is unhealthy it is a slow mental torture and it is absolutely not what a whole life is supposed to be. This society, our culture is not one that has taught elder responsibility through our lives.. why? Because it shouldn't be. Our elders are supposed to have planned for their own care as to to not expect a loved one to end their own lives to care for them in their elder years. Just as we should be planning our own care so we do not burden anyone when we ourselves age. When one is thrown into a dead end obligation ... it's life altering. I always give strong advice to not become sole caregiver .. to seek alternatives and make sure you" the one stuck in the position, can get out of the situation and live the life you were entitled to.

Oh and btw: Hospice is not free. You have to pay for hospice. The only thing that is free sort of is medicaid, but medicaid will take the house or any assets after a person dies to pay back medicaid, so be carefull. I never ever opted for medicaid for anything, beware.

YOu need to file for VA help if your grandfather is eligible. Hire a lawyer though that specialized in VA work, or find someone who knows how to file. If you don't you could wait too long for help. If your grandfather was in the army, navy, etc. he will qualify. YOu will also need to take steps to put him in a nursing home, so that you can show that you can no longer take care of him due to emotional stress. You have to show the VA that you can no longer take care of him, otherwise they will just say, oh, he is fine, she takes care of him. they don't care. But if you show he needs this because you are walking away, they have to come in and give him his VA benefits. These people can help. Please check out the webpage: www.cfevr.org

One day at a time.

In some areas, the office of the aging is very helpful. There are also businesses that provide a service that will help you through the process of medicaid paperwork, etc. A lot of those types of services are paid by medicare/medical insurance. You say your grandfather is ineligible for medical, do you mean medicaid? Sometimes there are ways around that depending on his financial situation. You can set up a trust pool and spend down the overage. This is something that you would need to get some help with in order to understand the ins and outs of it. You also say your aunt relies on you 24/7 as well. Doe she also have medical issues that require 24/7 care? If your living in the same house is creating the need within your aunt, then perhaps it is in your best interest to move out and help when you can while living somewhere else. There is so much to your story it's hard to really give you valid ideas to get you thinking in the right direction. The caregiver role is a difficult role no matter how you look at it. I took it on with my mom because I told her many years ago I would. I was prepared to do it, but not really. Definitely is a role that is hard to be prepared for, especially when dealing with dementia/Alzheimer's. But I do know that it is something that I have to do. Because I feel so strongly about it, I find ways to cope with the struggles and stress of the role. I would have a heart to heart talk with yourself and ask: "Is it in my best interest to be living here?" What are your other options for helping out your grandfather and aunt. Take care of yourself, first and foremost, then you will have the capacity to take care of others when needed. A heartfelt take care of yourself.

Start talking with the patient's doctor. Tell the doc they are unsafe at home alone,,you must work and cannot over see everything anymore. The doctor will involve the social worker or case worker,,if not then the next trip to the Emergency Room,,restate this to the ER Physican. The word "unsafe" isn't one they want to fool around with ,,they become libel if they know they are unsafe and something happens due to their neglect. They should be able to find resources to get in home help or assisted living if needed....keep on it,,I"m going through this as well

I know this must be hard but think of the years your Aunt has been caregiver. I did it for 20 months and it did me in at the age of 67. Your Aunt is taking care of a man. She has had no life for years. There are agencies out there. Call ur local Office of the Aging to see what services they offer. Call Medicaid and have the evaluate. Call Hospice and see if he qualifies. You don't have to be dying in 6 months anymore. Hope you have given ur Aunt some breaks. Cooked meals, cleaned up. Cleaned the house and cleaned up after yourself. Every little bit helps. I agree, that there was more going on with Grandma than Alzheimers. Maybe she had a mental breakdown that no one wants to talk about.

I read where Dementia patients die earlier than Alzheimers. When that part of the brain that helps you breath and heart to pump, the patient will die. This from a daughter who works in nursing homes\rehabs.

oh my...only 27 yrs old. yes, toooo young to give up your life! please post and let us know how this story evolves!