I am burned out, resentful and angry. My sibling believes I am "robbing his mother blind"...

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Ok I agree with everyone. This is not what I signed up for. I am burned out, resentful and angry. My sibling believes I am "robbing his mother blind". Therefore he has not spoken to either of us for 3 years. Of course I am missing work again today because the caregiver didn't make it in the snow.
I am also tired of being tired, tired of being angry. Mostly tired that there are such limited choices for elder care in this country. This site is filled with people just like me, can't we think outside the box and think of some alternatives?
Medicare is very limited, which is the best thing to say about it. Private pay is expensive, few people have the resouces to stay on that path very long. Government (Medicaid) leaves you little option except to exhaust your finances and be in a nursing home. Not to mention the inherent problems of a nursing home. $200 a day for institutionalized care. No one is going to pay us to take care of our parents. There may be a few limited resources but it isn't going to replace income from giving up a job. Besides for many of us, at least me, being isolated with mom 24/7 isnt healthy for either of us.
So I have been thinking about an idea of co-oping care. I don't want to make money, just share responsibilities. Similar to childcare, but 24/7. Does anyone know of groups that might have something like this working?
OK, did that idea sound stupid? Then help me what are some other ideas. I am the kind of person that needs to find solutions, you know fix processes etc. Well this process seems to need quite a bit of work. Government isn't going to help us, most of time their involvement only complicate matters. For many providing eldercare it is a conflict of their business interests to see families succeeding. We have no voice when the rules are make. It is our problem and considering the aging population it is going to more and more of an issue. Come on, where is the innovative spirit? Professionals, regular people: any ideas/thoughts?


I too, instead of getting angry, often try to think up solutions to the elder caregiving trap many of us find ourselves in because we want to give our family members the best standard of care possibloe. In my case, my family member needs 24 hour supervision and almost total assistance with daily activities and is eligible for Medicaid for nursing home placement. However, even though it would cost me nothing and would leave me "free", having experienced first hand the quality of care in nursing homes and assisted living facilities during temporary stays by my family member I know my family member would not survive long term in any of those places and I feel that, providing home care still beats the stress I had when dealing with these facilities and the amount of time needed to spend there to oversee proper care and provide some comfort for my family member. Not to mention the happiness that my family member has being free to eat, get up whenever, have a pet, a private room, peace and quiet, privacy etc simple rights that are taken away in most nursing homes and assisted living facilities.

So, the obvious solution for people in my situation, would be for the state to allot to me the same amount that they are willing to pay the nursing home for the same 24 hour care that I am giving for free at home. Yes there are state programs, but in my case it means 24 hours A WEEK in aide care provided. I don't see any need for nursing homes for such custodial care. Nursing homes should be reserved for those with serious nursing care needs. With these funds and funds from those who are paying these facilities for private care or individual in home care, your idea of co-ops could be a reality. Imagine two to four caregivers in the same situation could pool their funds and with the assistance of a non profit who builds residential homes (call them elder care long term time shares) where caregivers either participate by providing hands on care and maintenace of household (even nursing care for those with nursing backgrounds) or pay in probably less than they are paying now for more quality care because the people involved are family members in the same boat . Many of us have become as expert in hands on caregiving as licensed professionals , we just need the formality of a license. Or the group could co opt their medicaid nursing home diversion funds to start a neighborhood day or night care or respite program, which unlike most programs would provide beds and have aides to assist in toileting, etc which most senior centers do not provide. Or even those who want to go it alone - imagine what you could do if you have $100 per day, instead of it going to the nursing home, to arrange for care for your family member to stay in their own or your home. But in order to do this, caregivers would have to organize to approach elected officials, entrepreneuers, non profits, universities etc who would pilot these programs. Like a Habitat for Humanity type program for caregivers. Universities are getting into providing long term residential care facilities but the disappointing thing is that they are building luxury assisted living facilities on their campuses which are accessible for those who can afford it. What not start a pilot co op community with students participating to earn credits for degrees in nursing, medical, psychiatry, teaching, therapy etc.?
Hi, I am so sorry to hear about your burnout.
I don't know about alternative care but I am telling you, you need to get out. If the caretaken can't come, have two or three alternative caregivers lined up and get out of the house at least three times a week.
I moved in with my father years ago when I sold my house due to neighbor problems (threats, vandalism, etc) and he started having health problems shortly afterwards.
Here it is years later and because of the economy, I can't find a job in my field. So, I work part time and am my father's companion the other days. He doesn't drive and I am his driver. I finally told him point blank that I will take him a couple places per week but I am not a taxi service, cook, cleaner, errand runner for room and board.
I can see why people end up resenting their elderly parents and siblings.
tiredcaregiver: Well said!! I, too, have been getting "creative" with my Mom's care. I had the same experience as you when I got a taste of what a "facility" would be like for Mom when she went into rehab for 2 weeks. As nice as this place was, it was still a "facility" with all the smells and lack of attention. I can only imagine what an NH would be like for someone especially if he or she knew that they were never going back to a home environment.
There needs to be an interim situation for our loved ones. Mom needs more care than an ALF can give her and does not need the intensive care of a NH. I like deb's solution of a team approach....other caregivers coming together to form a network. At least it could provide some respite support. The problem for most caregivers is that we are too darned exhausted to get involved in a grassroots movements and make our voices heard in Washington. (I got so mad one evening, that I wrote a nice long letter to the President...I am certain that he read it ;o) Most caregiving is done by family (and mostly women) so the gov. is very happy to let us just keep on doing it. Even when Mom needed Medicare in-home assistance the director of the company acted as though they were doing Mom a favor! I had to point out that my parents paid into the system all their lives and that the director was working for HER! What a scam after care is. They sent us all these people to "evaluate" Mom. Nurses just took her pulse and patted her on the head. PTs scribbled exercises on a sheet of paper and would not address her real medical issues, and the aide they gave her did not know how to do the simplest tasks. When I raised the issue with the director, she couldn't care less....so I fired them all.
I agree with tired, for now, Mom is getting the best care in her own home. We do 99.9 percent of her care with a little help from a paid caregiver. Even that takes time because I have to coordinate everything. BUT when I think of Mom wasting away in a NH, I could not sleep at night.
I have a huge extended family. It seems like all my cousins are shipping off their parents to the NH when they get too "bothersome." They are being sent there way before they needed that type of assistance. The thought of these wonderful, vital, people deteriorating in an NH makes me ill. My aunt just passed away this week exactly 6 months after being placed in this gawdawful NH. Then the kiddos descended on her belongings and divvied everything up. Shameful.
Do I miss having my life to myself? Absolutely. However, as long as I can provide my Mom safe and approrpriate care, I will continue to do it.
I wish I could stay at home and take care of my Dad, but even if I took all of his Medicare and conributed it to the household (which isn't fair to him), it still would not equal half of my salary. So I work all day and Dad goes to a Day Care. My fear is that as his Alzheimer's progresses, I will no longer be able to keep him with me as he at times exhausts me now. He is just beginning to not bathe himself properly or use the bathroom and keep himself clean. I have no help from my Brother's or his wife (which I am divorcing for him) either morally, physically or financially. I can't stand the thought of putting him in a nursing home, but I don't know that I will have a choice in the near future.

I think it would be a wonderful idea for the Government to pay Caregivers for taking care of their loved one's. If I received only 75% of my salary per year to take care of my Dad, I am sure it would reduce the amount that would need to be paid out in Medicaid expenses as nursing homes charge astrinomical amounts for patients. I am sure there would have to be some strict guidelines that would need to be followed and follow up visits by the State to be sure that all guidelines were continuing to be followed, but as our society ages and more and more children are caring for their Parents, this would be a good alternative to having to put them in an authorized Medicaid paid nursing home where they would not get even close to the same care as they would with Children that really love them,
karenc, when you say your father's medicare, I assume you mean social security retirement or SSI payments? I was referring to the money that state medicaid would have to pay for nursing home medicaid care if I could not provide 24 hour supervision anymore. Right now, I am able to telework part time for my formerly full time job, so I couldn't afford to do what I do either if I had to rely on my mother's very low SSI monthly income. But if I had the money that they would give to a nursing home (at least 100 a day and this does not include medications, physician visits, therapy) , instead of the 24 hours a week they gave her b/c she is in a community nursing home division program, I would be able to work full time and actually have some free time to take care of my own needs. Because states already have these nursing home diversion programs, there already is supervision in place. A social worker/case manager from the state contracted provider comes every 3 months to assess and ensure proper care and that the person is safe to remain at home. I assume if family member wanted to be paid from these funds to be the main caregiver (I'm not paid anything there is an agency aide that provides the 24 hours they pay for) there could be a process to train and license the family member so they would have some income while performing caregiving duties for family member.
Wow! I was thrilled to read your comments. Just to get some positive feedback and not total thumbs down is a beginning. There seems to be some common thoughts.
It would seem an overall desire to see our parents cared for in a home-like personalized setting. We all seem to want to continue to be involved in their care. Having the energy and focus to initiate changes is difficult. The government is paying lots of money for what we as caregivers see as very poor returns.
(I have 30 years experience as an RN and I can tell you that I quit looking to the system to help me. Home care, PT etc was not relavent to what we needed.)
What I see costing 150-200 a day at a nursing home makes me crazy. So, I am committed to finding better way! That is a big step.
I really liked the idea of contacting the local University that has a geriatric program. I am going to call the graduate program and see if any one will meet with me.
Tired is so right. Those of us in these situations are isolated and with limited resources. We can't be running all over and taking care of parents at the same time. The people who have the time want a business venture. When you add business to the equation the cost becomes much more prohibitive. Search on line for the green house project for eldercare. It looks great. Of course it is very costly. But it is the core idea that I would like to see families co op together and see if we could provide care for our parents in a like setting.
I wish it was as easy as finding child care, because it's basically the same thing. 24/7, constant care, can never be left alone. We are now looking into reverse mortgages (can't do it because of the type of housing she owns), and the terminally ill life insurance early withdrawls. I really hope something comes through, because we are getting desparate.
The idea of a family co-op is also known as an intentional community in some parts of the country. It’s usually considered independent living, and it is working in various places around the country.

I am including a link to a story so you can read a little bit about it:

If you can hop on the Internet when it’s convenient for you and look in your communities, see if it comes up.

I can completely sense the frustration/exhaustion in your comments, and I am so sorry that you are where you are emotionally. Stress can take a terrible toll on you as a caregiver, so please remember to take care of yourself.

Have you exhausted all the programs here:

I wish you well.
Thank you for being a caregiver.

AgingCare.com Editor
Intentional community, Beacon Village in Boston wants $350 to share their "founders manual and business plan". $500 if can't prove I am non profit! Gotta love it. They do advertise that they will be featured 2/3 in an interview with Diane Sawyer.
Anybody else have experience with intentional communities for elder care that they could share? I am just looking for ideas outside the box. Keep sharing. Thanks,

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