How do you deal with being a family caregiver?

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.

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.

It is 'like you are dedicating your whole life to them'. And it is unfair, especially at your young age.
BUt to answer your question about finding some financial assistance....is your grandfather a veteran? There are many threads in here for veteran care assistance.

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.

If you are 27, then your grandmother must have had dementia for 27 years based on what you say. That seems highly unlikely. Dementia is a terminal illness and females do not live that long with it. I suspect she has another disease as well. However, life is difficult to quote Dr. Scott Peck from his book "The Road Less Traveled". Since you have no POA, then your aunt needs to look into financial assistance. I suspect a place located in San Francisco is very, very expensive, so how is your grandmother able to afford that? In order to get financial assistance from a state or government, one has to provide financial records to prove they need it. At 27 years, you are a babe in the woods, and no one guarantees you a handout, but only hand-ups. Work hard and make sure you are providing enough financial savings for your own future. Take some lessons from your aunt, and I hope things turn out for your family!

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.

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.

Its just what you do for your family. I know how you feel. Been living and taking care of my mom since 29, and now almost 37. I raise a 15 yr old son on my own and im in college. It is alot! It is so stressful, but you made step in right direction by coming to this site for help! We alo know just how you feel. Some days want be so bad, and others you will dream of running away! But in all serious, your doing for your family, and that is very commendable! Look for all resources in your state for elders, and if yiu can spare the time join a caregivers support group. Wish you all the best and we are here for you!!😊😇😊

Ferries is incorrect... there are over 50 types of Dementia ... and Alzheimer's, so far is the only known dementia to be terminal. A person exhibiting dementia (dementia being a generalized term for psychotic episodes of many degrees) .. as far as you, as it being unfair, it is. Find help now, and get to "your life, they've lived theirs.

Correction "ferris" is incorrect.

I was a RN specialising in Geriatrics and when it was my turn to be the only caregiver 1st for my father in law and the my mother in law I thought I'd lose my mind. You've recieved some excellent advice. All I have to add is this; there is a book "Elder Rage or Take my Father, Please!" I've lended my copy or I'd give you the author. I found it by accident in my closet (fate). That book saved my sanity. I remembered why I had used it in practice for all those years. When my F-I-L, died (he was the good patient) and his wife became mine I jumped into proactive mode. I went anywhere I could to reduce her living expenses, taxes and such, did a reverse mortgage so we'd have the money to care for her when we needed to and husband is D and M POA and I am backup. She is awful but I'm aware of the games she plays and made sure her 3 sons have experienced them personally,lol. I have my own health problems and recently I hit my end and quit. After they all were on there knees I hired a lovely woman as a companion. She comes M-F for 3-4 hrs. All is well. She tried once to let her go and I told her flat out NO. She was our compromise and if she goes, I go. Here's my plan...I figure there's enough money to let her age in place until she is cognitively unaware and then we'll reevaluate. The house is valued at about 120k. We took 45k in the reverse mortagage. Put have in a money market to grow ( almost 1k so far). A RM does not require payback until she's been out a year but they start asking every 6 mo. Also, if your family member has any life insurance check to see if it has a terminal pay out. Many will allow you to take 1/2 of the payout with a terminal diagnosis. This is my plan. I have very bad COPD. When I need care we will pull 75k which will help tremendously and still leave 75k for my spouse. So there are a few suggestions. I'd find the book 1st. Good luck and remember your karma is hugely positive and that will matter, paying foward.💞.

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.

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

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.

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.

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

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.

One day at a time.

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

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.

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.

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....

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"

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

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.

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!

... Excellent comment & advice Jessie-belle.

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.

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

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.