vjohnson Asked August 2014
My Mom cannot afford assisted living. What do I do?
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I have come to the end of my rope and my mother refuses my help (I am living with her). She is not in bad enough health to go to a home but is short about $1000 a month for assisted living. I am so stuck. She has been throwing fits for days and I'm afraid if I go to work she will surely go down hill.
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It sounds as though she was in rehab at a nursing home and she's used up the 20 days that Medicare will pay for at 100%. From day 21 to 100, there is a copay ( if the patient is making progress).
Have you applied to the VA for Aid and Attendence?
So I sent back and got her. Her health is worse than ever. I worked . Run hone at lunch to help her then back to work. But she still got bedsores. She became so obstinate.. and they got worse. So in last in the last 5 months she's had 2 surgeries to remove the infection. While I thought that would be helpful. It's worse. She's now in nursing home, but medicare will not pay for longer term care. She doesn't qualify for medicade. I have just found out that she does qualify for an aide. ..finallty. as she has a colostomy bsg, feeding tube....and these open wounds that in reality ....will not heal. I thought surgery would fix it all.
Plus nursing home now says she owes a copay of 160 a day that insurance doesn't pay and it's thousands of dollars.
It's all I can do to hold it together. I'm at threads right now. In the last 3years...I've had these last 3 months where I actuality could sleep uninterrupted. But that's about to end as I have to take her from there, cuz we can't afford it. I've been told that widow of a veteran there's help... but I can find no information to validate that. Any help would be great as my father was a veteran.
Struggling.
Thx.
Take care of yourself,
Carol
Vikki(Kiwanis!), MM, Bookluver, kudos to you all!
We have got to stop responding in kind. We all want to offer sympathy, acceptance, and a shoulder to cry on when that's what someone needs, and advice to look at things differently when they need that even more. We want to share our experiences and make something good come out of the difficult things we have been through by having it be helpful to someone else.
Destroyed - you do need to know that you are in fact coming across as not just suffering and a victim of injustice, but as someone who is unhinged, and that may well be a real-life factor in making it less likely that anyone who is supposed to help you will help you. If you could give the actual back story - kind of Dragnet style - just the facts of the situation and where you are now - it is possible that someone will be able to read between the lines and help you find the key to making something better or at least approaching tolerability. If instead you just want to make the point that your situation is horrible and no one anywhere has a shred of comprehension or compassion for it, if somehow all the put downs of people who really are trying to understand and help are keeping you out of the darkest part of the black hole of despair - the problem is that this approach is hurting others too much, and bringing out the worst in us and it really has to stop. There is a different way to go about this. Think about what you really most deeply want...it may not be possible, because I think what nearly all of us most deeply wanted is for our loved ones not to be deterioriating and needing care, and for ourselves to have their love even if they really did not ever have it to give. But other things we want may be possible: we want to feel good about ourselves, that we have done the best we could see our way to doing, and that we had as positive an impact on our loved ones as possible under the often terribly difficult and sad circumstances.
There is another way for you to reach out and get something of what you need..there is another way we can respond. I've seen it here, I've felt it here. We can do this.
Just because a person has burned out does not give them the right to accuse or attack other posters' comments. When I found this site about 2 years ago, I was passed burned out from caregiving 2 bedridden parents, clinging to my full time job because I'm not independently wealthy nor were we poor enough to qualify for the federal government's program (for housing, foodstamps, etc..) I had 7 siblings and no one stepped up when dad had his stroke and became bedridden. It was just me and my 2 bedridden parents. Mom was basically a vegetative state on oxygen, stomach tube and trache (constant suctioning every 10 minutes day/night or else she literally chokes to near death if not suctioned in time).
When I found this site, my therapist said that I was close to dying from exhaustion. I was very bitter, angry, resentful, hated my siblings, my parents, God, myself and the whole world. I already decided that I was going to kill myself as the only means to get away from caregiving.
But not once, have I ever attacked anyone here on this site. Yes, I attacked verbally against my siblings, my dad. But not to the strangers here. My bitterness/anger has nothing to do with them. Why should I attack them? So, just because one is burned out and bitter does not give them the right to criticize posters' comments if they are trying to be helpful. If you don't like it, skip it. If you think they are being hurtful, you report it. What I did was vent here all over the different threads my anger and bitterness against my family. I kept venting until I got most of it out of my system. You see, I kept it all inside of me. I'm just so glad that at the time I was venting, no one criticized me like I've been seeing all over this site. There are soooo many bitter angry people here. No thread seems to be safe anymore.
Most important of all, I just keep worrying about the newcomers. They come here seeking for help and I don't want them to be scared off by all the aggressiveness on this site. Sigh....
I don't know your back story. Haven't been around long enough.
I can't even imagine why you sign on except to disrupt the forum and take your anger out on a bunch of OTHER caregivers who're doing the best they can with what they have or don't have. Such is not the case with you.
That is NOT the case for all people. This is NOT a competition!
If everyone on this forum is here to brag about what they are getting and have, so be it. Not the type of forum to be used for those seeking help for loved ones and caregiver concerns. You have all made it clear your own personal egos are in much need of validation by the constant berating and hateful comments toward me. I feel sorry for all of you. Your hate is well documented. I am so glad to hear the pettiness of your views on ME instead of the subject. I will author another book and all of you will be reading it and not know I was the writer.
I understand from previous postings by you earlier this month that you feel that the Caregiver has no rights and how easy it is for the person who has dementia to call the police and have the Caregiver arrested. Apparently the case didn't turn out the way you had hoped. That's tough situation. And yes, something has to be done.
As for a relative to use all their own money to care for an elder relative, well that was their choice to use their own money to keep the elder at home, or for the elder to use Medicaid and move into a nursing facility. Not all facilities are terrible, if they were no one would be working there, or in residence. And if the facility's has a Alzheimer/Dementia wing, there is not much one can do to make it feel like a 4 or 5-star hotel.
My "family" is my cousin. She comes over once a week and calls every day. My friends? They Facebook me for updates. One, busy earning a living and caring for her own disabled son, and once a month for 3 hours, we get together for dinner with two other of my friends. I never see them otherwise. Those people, and Tom, my partner for 14 years give me my hugs and support. Not exactly a long line. But enough.
You want to throw stones. Okay, I'll play catch with you.
Why are you spending your life savings caring for your parent? Just what kind of care does this parent need that comes out of your pocket? Medicare and a supplement pays for every single thing for my mom. She did work, though. So her Social Security check is the national average of about $1200 a month. After her Medicare and supplement premiums, she has $750 left -- includes a Part D drug program, too. She pays for nothing. Until a year ago when she moved in with me, she got the best medical care on the planet from Loyola University Hospital. Didn't cost her a dime,
What's it costing you? What have you spent your life savings paying for? Why are you different?
And lastly, a repeat of the post you were responding to:
"Our government doesn't float old people away on icebergs. If someone is destitute? They will get the very same care my mom would get in the nursing home that will charge her $9,000/month because she has it. I know this because shirt-tail family has an aunt in that very same facility. She was Medicaid from Day #1. Has been in that facility for six years. She is 101 years old. They can't say enough good things about Lexington. And, since mom rehabbed there for two months? I can't say enough good things either."
Now. If you expect to stay home from work, have your mom pay for the roof over both of your heads and the food you eat in exchange for your care-giving? Then I understand the problem. And it's not the system.
I refuse to believe your state has snake-pit nursing homes. What state? I'll do some homework, 'cause I'm betting you haven't. My money's on you don't want mom in a nursing home because you lose your place to live.
If the care you've witnessed isn't stellar? Well, it's not going to be stellar. That's where you, as her advocate, come in.
And speaking of helping others...where's your OWN contribution beyond attacking those who offer well-meaning suggestions?
I live a blessed life. But the resources I mentioned, Meals on Wheels, a cleaning lady to come in twice a month for $28, a snow shoveller for $15 or $20 a time, a $1000 stipend for companion care . . . those are available to anyone, means or not. Senior apartments available for around $800/month in terrific neighborhoods. Walk to everything. Many MORE services available that mom doesn't get because of her assets. You've got them, too. Give me your state and maybe I'll have a look for them.
I have been in my state's facilities for the elderly and I can tell you I would not put any living creature in those places. Consider yourself lucky. Thank the LORD you are not in the position of others seeking help. Please understand, what you have/are experiencing is not the NORM for everyone. You come off as a braggart. We are all happy for you and your family. Now, back to business of helping others who are NOT so fortunate.
Our government doesn't float old people away on icebergs. If someone is destitute? They will get the very same care my mom would get in the nursing home that will charge her $9,000/month because she has it. I know this because shirt-tail family has an aunt in that very same facility. She was Medicaid from Day #1. Has been in that facility for six years. She is 101 years old. They can't say enough good things about Lexington. And, since mom rehabbed there for two months? I can't say enough good things either.
When family surrenders . . . when they say, "I can't manage anymore," there is help galore out there...AFTER that person has spent their own money. Families want to "save the home" -- "save their inheritance" -- have a low-cost place to live while they're "care-taking" their loved one -- who don't EVER want to see them spend what they've saved all their lives to accumulate?
Those people are their own worst enemies. Money is NOT the problem. Trying to hang ON to it is the problem.