How do you deal with being a family caregiver?

I have to take exception to the comment that "It's just what you do for your family." Or rather, I take exception to stating this as if it's a hard and fast rule, beyond question, rather than what it actually is: a widely held but not universal or unquestionable point of view. I'm just not on board with the idea that one is obligated to make any sacrifice necessary to take care of any person who happens to be a blood relative, regardless of their personal merits or how they may have treated you or other people in the past, just because "it's what you do."

I think we're all entitled to our own lives. More importantly, we're all entitled to make our own judgment as to who and what is worthy of our personal sacrifice. Nobody should get a free pass just because they're blood relations. Nobody should feel obligated to make huge sacrifices for someone just because they're family either.

You know, I really thought about all this on this holiday. Today I have really been aware of how alone we are here. It is just my mother and me. No one called or came by to see her or me. I was the only person she had to talk to. She talks about children almost all the time or the neighbor across the street. I don't know if anyone can understand how difficult it is to listen to someone with dementia talk about children they used to tend in the daycare. She talks about what they did and what their parents said. She talks about things she did long ago, telling the same stories again and again for seven years.

Now to hear someone come into a caregiver group and criticize, saying to ask someone else to do what we do, is hard to hear. It's not like people are lined up to help. The truth is if they care, they don't show it at all. I would absolutely love it if someone did take over for a while.

I do believe that caregivers can become mentally ill from all the stress. It goes with the territory. Many of us who were sane when we come in lose our grip on reality when dealing with someone with dementia. It bothers me when someone accuses us of complaining and being mentally ill. If we can't complain here, where can we complain. And personally I am as crazy as a bessie bug now because I've been caregiving too long without anyone else that cares.

Complaint over.

Find out why grandpa can't get Medi-Cal. Usually there are errors or insufficient documentation. Now your aunt needs care and her Medicaid application will be totally separate. You must submit five years of financial documents. Incomplete data is the biggest reason for rejected applications.

Blessings to you for helping your aunt and grandfather. Grandparents in nursing care, their daughter (your aunt), taking care of them, and now your aunt needs help and you've moved in with her. As far as financial help, I'm guessing aunt isn't old enough for any kind of social security benefit she may have earned from previous employment in other words is she 65 yet, or 67.5? If she is, she should have social security. If she's younger than that, and has any major health issues and cannot work she should apply for disability if she's under 65. Otherwise keep working on Medicaid for the grandfather. If grandfather worked which likely he did, he should already be collecting some type of social security benefit and/or Medicare/Medicaid. Aunt could also look into doing a caregiver contract for taking care of dad, have it legally done through an attorney, cost varies, but it's typically low, maybe 200 to 500.00, low compared to things like wills or living trusts. This would make her an employee to the grandfather, and although likely the only source he'd have to pay her with would be from his ss, it would give her the funds to keep a roof going over grandpas head, she can use those funds to pay utilities, buy food, pay rent/house payment, etc,.. just like she would any other job, it's income, she'd also have to pay income tax out of it, I'd recommend to do that quarterly.

As for just coping for you, it's hard and it's hard to not be angry at other family members for not stepping up. Most of us feel that at some point. Being a caregiver is usually an act of taking the higher road, your aunt has taken the higher road by taking care of her dad, caregiving isn't pretty, it's tough and it can be downright ugly, there's no perfect way of doing it and it leaves people almost battle beaten. Not one caregiving situation is the same, there are many variables whether it's medical conditions, family conditions, financial conditions.

Caregivers need breaks. If you've got the space, I'd set up a room where you live that's the break room, not kidding. You and your aunt can have quiet breaks away from everything going on in the home. My break room is outside doing yard work, and I set up my bedroom to the furthest corner and quietest corner of the house. I'll set my dad up with lunch or dinner and while he's eating, I got to that space, work on line, watch a show, etc.... In that room I'm not surrounded by medical supplies, and all the other things required for caregiving, it's a normal room. Anyone caregiving for awhile understands what that means. It'll help you a lot and your aunt if you do your stuff on a schedule as much as possible, so your aunt knows when you'll be there and not, and let her know ahead of time, that when you are there, you have to do this or that and cannot help with grandpa at certain times. If she needs your help, she should let you know ahead of time if possible. I hope something out of all this helps you. Stay strong.

.... ikdrymom.... I have to most seriously argue your last paragraph. No way in h*ll should he go light on any siblings refusing or ignoring a situation of his or his grandfathers need. Their "help could be in many forms, talking, actually helping in spending time, spending money to help fund his care in the areas that are needed, even trying to find a better way, a plan could be created by all of them getting him on waiting lists or registered into a facility, etc etc etc. Dead beat siblings (non-involved, non-assisting children of the elder parent/s) do not get clemency, they do not get a pat on the back "Good for you for being smart enough for turning your back"... are you freaking kidding me! No seriously what in the h*ll is the matter with you ...unless, are you one of those dead beats?

Then you go on to say you have little sympathy for those who complain about doing everything?... wow, did you think these people may have no g-damn person to talk to and absolutely no where to turn and they are literally stuck in limbo or stuck between help or walk away and abandon another human being..so they are simply releasing some pent-up truths of their own situations????

Then you say a person chooses to be in the position of care, that they dont have to be? God... Sure everyone should just throw the elder in the car and drive them to the nearest nursing home, right.... No really, have you ever read all the different scenarios that actually take place that leaves only one person in the care of another??? Have you?? I'm actually quite p*ssed about what youve said. Take me for instance, I am in literal limbo and "stuck" with having to care for my 76 yr old dementia sufferer, mom .... why? because she was wrongfully evicted from an assisted living facility (they stole nearing 10k of her belongings from her personal storage closet in her apartment, then they had the nerve to evict her after I filed 2 police reports of the thefts. She had no where to go, her lovely son first rented out, then sold her home (it was in his name...) All 3 (of 4) adult financially well-off children denied her a place to stay during that emergency (umm no we cant take you in, sorry mom) .. so I took her home. She has 4 adult children including myself, one makes over 300k per year, another well over 100k. I have placed her has on waiting lists to get into another assisted living facility, but shes extreme low income so shes Medicare Waiver recipient (meaning facilities dont exactly invite her in) ... she does not qualify for any "in-home care" state or gov assistance (because there is none) and unless I go to work which does nothing but to pay a day care provider for her because she needs 24 hour monitoring (meaning everything is coming out of my pocket of which i can no longer afford jack-sh** ,much less turn around and pay for another to come in and do the job im already not being paid for myself !! ... So unless volunteers do it, and that is a joke, its unreliable and they are strangers each time to come into my home, that is not only unsafe, but a major worry (since i have children).....So she sits in my home needing 24 hour care and monitoring and my finances cannot afford to pay another day to care for her, yet Im not being able to work the amount of hours needed to afford it all because she needs the care. Now, I could (as her other 3 kids desire and have said so verbally) dump her in a nursing home, but she is no where near that state of care needed and it would depress her severely to be surrounded by such declining individuals let alone out "nursing homes are not exactly blue ribbon categorized facilities ...So she sits here, has my care, and I cannot work as much as i need to to afford her life and mine.. its the largest d*mn mess Ive ever seen.... so dont you dare come onto here and say what you've said.

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.

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.

Pamstegma -- Thanks for mentioning the five years of financial documents. I am 85 and preparing the information my son will need if he ever needs to send me to a nursing home. His father-in-law is exactly my age. I will suggest to my son and his wife that they obtain all the information they need about her father too.

I can't speak on the financial end, but I can speak about the stress of caregiving. I'm an only child, so when my Mom was diagnosed with Lung cancer, my husband and I became to sole caregivers with majority falling to me. Many times I thought I would scream, at those time I would take a time out. Many times just stepping outside gave me a new outlook. At times when things would get so stressful, I found something in that situation to smile even laugh about. I know it doesn't seem fair but remember you are making they days brighter by helping and being there for them. My mom is now gone, but I so happy I stuck it out because I know she was much happier in her last days. Plus I have made some precious memories.

You are 27, and no it is not fair. You need to build your life and career. If aunt can no longer care for grandpa unless you help, then it is time for grandpa to live somewhere else. Have you looked at facilities at all? There are many nice ones that will provide the services grandpa needs, without your help.

My mom was diagnosed with dementia 12 years ago, it can go on and on and on. There may be something else going on as ferris says, but there may not be.

See an elder law attorney that specializes in Medi-Cal planning. He is permitted to own a house and a car. Does he have quite the portfolio of assets? He does need to spend down all but house and car to become eligible.