posted on June 23, 2002 04:17:08 AM new
This is probably not the right place to ask for advice about this, but I've looked for chat boards related to heart failure and can't find any.
My father has chronic / congestive heart failure and has currently been hospitalized continuously for over a month.
He can no longer walk or stand or do much of anything for himself and was transfered out of the hospital to a nursing home for rehabilitation. That lasted 2 days before he had to be re-admitted to the hospital with fluid on the lungs.
I don't know if he'll be able to take rehabilitation now as he gets weaker and sicker everyday. If he's not able to do rehab the nursing home won't take him back unless someone pays around $50,000 a year for his care. Medicare was going to pay for 20 days of rehab, but won't pay for him to stay in the home for any other reason.
Does anyone know anything about the prognoss for someone in this condition or how to find money to pay for continued care?
Even though he's lost 50 pounds in the hospital my father's a big man and if they send him home I cannot move him by myself nor can I afford the proper equipement to care for him. The hospital had to have 3 people (1 man and 2 women) to help move him in bed.
He would need 24 hour a day care if they sent him home. I have to work so I wouldn't be available much of the day and I would have to move into his place to take care of him.
Even if I find someone to help during the day, I would have to be up most of the night montoring him. He needs help through out the night and is in constant pain. So I would be up most of the night and then have to work all day.
My extended family has been avoiding dealing with anything that has to do with making decisions or providing care and won't be around to help care for him. Everything has and will fall almost completely on me and I don't know what to do.
Right now I have to go to work and after work I'll go to the hospital. I only managed to find the time to post here because I'm not sleeping too well. So I'll probably be back to check this post in the middle of the night.
There's actually more problems with this situation than I can talk about right now, but I wanted to see if anyone had any advice.
posted on June 23, 2002 04:44:40 AM new
It does not sound as if the doctor has been giving any straight talk with you. You need to have a definate statement about your Father's prognosis. Do not accept being just forced to take him home. Simply refuse to accomadate them to arrange transportation or sign any release to take him to your house because if they can bully you into taking him home to save money they don't really care if you have a job you need to work to survive.
You will have to be very assertive that you do noy have the ability to care for him unless you are truely independantly wealthy.
A lot depends on your father's age and his doctor's expectations. It sounds like he is totally disabled and will need nursing home care. What is available depends a great deal on what state you are in. Ask for agency names to help you find out what is available.
You have to be assertive and even aggressive. If you expect the doctor and hospital will take care of everything you can end up screwed.
posted on June 23, 2002 05:29:52 AM new
Congestive heart failure is a terrible condition for the patient and is very tough on family members because the loved one becomes so dibilitated. The heart is basically a pump and when it begins to fail fluid builds up in the lungs and the tissues cannot get enough oxygen. Every movement becomes an effort. It can be treated with drugs sometimes with miraculous results, almost like remission in cancer patients. I'm sure that's what the doctors are trying to do now: find a specific combination of drugs which will ease the strain on the heart and make it more efficient. One thing is certain, he has to get the weight off.
The other thing is certain is that it is vital for family members to be around as much as possible. The patient can do very little for himself and the hospital staff tend to ignore these patients. Medicare is vitally interested in getting him out of the hospital to reduce their costs. Don't let them talk you into releasing him until his condition is under control! You should not have to pay for the hospital bed rental, wheelchair, oxygen machine, etc because Medicare picks these up.
You are going to need help, you cannot possibly do it all. It sounds like your family is willing to let you do it all. Don't accept this by default.
Do you have power of attorney? If not, do that immediately.
posted on June 23, 2002 05:53:53 AM new
My mother in law had a similar problem. She used the 20 day rehab which, like your father was unsuccessful. Then the county provided nursing care at her home until she had to go to a nursing home. The nursing home will help relieve you of all of his money in order to qualify for medicaid.
For example, my mother in law had to give all money and property to the nursing home. It's called "spending down".
You should look for a nursing home right now, while your father is in the hospital and make those financial arrangements. They will be happy to take your Dad and all of his assets and help you with the medicaid arrangements. Make the arrangements now so that your Dad will be moved directly from the hospital to the nursing home.
This has been my experience in the state of Maryland.
Like Gravid suggested, it's sometimes necessary to knock a few people upside the head, including the doctor to get the ball rolling.
Right now, I'm working on getting pain medication for my mother in law. She is dying and they are afraid that if she is given pain medication that she might fall down. Incompetence is abounding in the health care industry at every level. Last night, when I called the nursing home, I needed a translator because I could not find an English speaking person to talk to. The doctors are indians and the nursing homes are run by Jamacans.
You cannot allow them to send your father to your house. You would need a staff and unless you are wealthy, that is not an option.
posted on June 23, 2002 06:07:55 AM new
Greatlakes, I'm sorry about your dad's condition. I went thru the same situation with both my grandparents, but Medicare covered what was necessary. DeSquirrel is correct in the basic description of what heart failure is. And he is right about the POA!!!
Gravid is right about how you will have to approach this. Simply say you do not have the resources and ability to care for him at home. Don't feel bad about this! If he requires 3 people to move him, it's past your ability.
posted on June 23, 2002 06:12:45 AM new
Greatlakes, I'm sorry that your father has to experience this debilitating disease. My father died two months ago from congestive heart failure. If your dad's doctor can find the right balance of medications, it may bring much relief. However, the doctor should have a frank talk with you and your siblings. I'd try to arrange a meeting and emphasize to your family the importance of being there.
My father was able to stay home (in the hospice program) because my mother was there in the house and he was somewhat mobile. It doesn't sound like this can be done in your case so I would be reluctant to sign him out of the hospital in his present condition. Do you have a friend who is a nurse who can visit him with you? He/she may be able to make some suggestions about the level of care your father is getting. Hospitals are so short staffed these days that families often have to take up the slack.
posted on June 23, 2002 06:29:01 AM new
Yes you have to be very firm. I had the opposite problem once. The hospital would not send my wife home until I agreed to a payment plan I could not meet. When I asked the fellow if my wife was not free to leave he affirmed that yes that was the case. I asked the administrator to dial the police and hand the phone to me. He asked what for? I said because I wish to report a case of false inprisonment to them and have you charged.
His entire manner changed and he stopped acting like I was a child and he was an aggrivated school marm. They have all kinds of nerve because they are used to telling people what to do and meeting no resistance.
Money is always the bottom line. Just follow the dollar bill and you will know the reason for EVERY move that they make. My Mother in Law's substantial amount of savings, and other assets were all gone in several months. We made the mistake of not considering estate planning in her case..
I would like to assure this poster that she/he will not be required to pay any money for the nursing home. The poster may want to get power of attorney so that her Dad's social security and payments from his checkbook are made. Bookeeping is another skill that is not up to par in the health care business.
posted on June 23, 2002 07:12:22 AM new
I would also strongly urge anyone dealing with hospitals to get anitemized bill. I have never checked one yet that did not have incorrect charges. You have the right to an informed opinion -Harlan Ellison
posted on June 23, 2002 07:16:38 AM new
My father has been in a nursing home for about 3 years. He had a stroke that excelerated his alzheimer's. So, the doctor's said. Caring for him at home wasn't an option. Due to the fact that my husband and I worked full-time. He receives Social Security. We found a nursing home that would accept Medicare and Social Security. Granted his entire Social Security check pays the nursing home bill each month. So, I would check to see if your father qualifies for Social Security if he isn't already receiving it and then go from there. Just a thought.
posted on June 23, 2002 10:13:36 AM new
there is a good website where heart disease patients post questions and there is a doctor who mans the website,i cant find it now but i will post the URL when i find it.
if your father takes anti-diuertic such as bumex,dont forget to replace the minerals removed such as potassium,sodium etc which you can find in banana,oranges .
the heart benefits from a good nutritious diet and some exercise,but i am not sure your father can withstand the stress of exercise.
are you the only child??
posted on June 23, 2002 05:00:55 PM new
I am truly sorry you are going through such an ordeal. I was in a similar situation 3 years ago (father had stroke and was bedridden) and it was h*ll on earth.
Above all - don't let the hospital/administrators/Medicare/etc. push you around!! Stick to your guns!! You can't take care of him by yourself at home - no ifs, ands or buts. They *will* help you get him into a nursing home. It might not be easy - some areas don't have enough beds (or enough beds that accept Medicare/Medicaid patients). But be persistant.
In our situation, we were given the choice between Medicare (Medicaid?? I really don't remember any more) paying for three months of rehabilitation at a nursing home/rehabilitation center *but* he would have to come home afterwards. Or they'd find a space for him in a nursing home. Of course his children (four of us) wanted him to get rehabilitation but I was still leery because of the 'having to bring him home afterward' part. But one of my sisters had to play the hero ("She'll take care of him", "He doesn't need to be in a nursing home", etc.). She doesn't work during the day so it could have been feasible. Anyway, we opted for the rehabilitation.
He was due to be released on friday at 2:00 PM. Thursday night my sister called me and said she couldn't take care of him, it would be too much stress, her house is too small, etc. etc. As the only other sibling that actually owns her own house - I had to take him. My ex-husband came over the next day to build a ramp - I didn't even have a way for him to get into the house. The bathroom was too small for his wheelchair - I had to carry him in the bathroom (he's was about 5'10", 180 lbs).
He lived another 18 months and it was the absolute worst period of my life. I will never forgive my sister. I am civil to her now but when my mother passes away, I will cut her out of my life.
Don't let the same thing happen to you. It sounds like it would be even more difficult for you because your father is bigger. Don't trust your siblings to *help* - they'll start with good intentions but it will stop as soon as it becomes inconvenient.
Accept that - if your father is not married - they will take all his assets before Medicare will start picking up the bills. If he's married, his surviving spouse is allowed to keep certain things (house/car) and maybe some other things (I don't remember). They will keep all his monthly income (I'm thinking Social Security). Just accept it. But don't accept him living with you. It doesn't sound feasible and you just have to stand your ground.
Best of luck. Let us know what happens. We'll be thinking of you.
posted on June 23, 2002 10:29:39 PM new
Hi greatlakes,
Im truly sorry to hear about your situation. I'm 44 years old and have had kidney disease since I was 27. I know this must be a very trying ordeal for you. I agree with gravid that you MUST BE ASSERTIVE! As another poster said, hospital officials are used to telling people what to do without any opposition. I'm sure this is emotionally draining for you. If you can't enlist the help of your siblings, sometimes a good friend who will lend you their ear and listen with care can lessen the burden. It really helps to have someone to tell your problems to.
Hospitals in general want thier patients to get healthy while there, but, they are a business also. They do not survive by spending more than they take in. The doctors are the head of the business team. My former wife is a registered nurse and tells me all the time that many insurance companies allocate only so much money for any one procedure. After that money is used and gone, and you wish to stay longer, you are on your own pocketbook.
As another poster said, your father should be taking a diuretic (water pill) to remove some of the excess fluid from his system. Make sure that he's taking them. If you don't know, ask the doctor to make absolutely sure.
Your community may have Visiting Nurses that would come to your home to lighten the load of caring for someone. A very important point is also, many larger hospitals have Social Workers on staff. These are not Social Workers that are often associated with the welfare system, but are employees of the hospital that are skilled in providing assistance in procedures involving special needs, in cases such as yours. He/she may be able to help you understand your options in this situation. Often, this person will be a great aid to you and very likely will help you with filling out and understanding forms for medical care Be sure to ask the hospital staff member about a social work department.
I'm absolutely sure the people here on this board will always be willing to listen and respond to your concerns! Right Guys?
A friend of a friend started a business where she takes your hospital bill and analyses it and determines the "correct" charges. She used to have a big time job in either insurance or medical writing. Now she charges a percentage of the bill.
Typical stuff:
$85.00 for a bottle of 500 aspirin that day you had the headache.
posted on June 24, 2002 04:29:30 PM new
A male cardiac patient charged for an OB/GYN tray was pretty glaring. You have the right to an informed opinion -Harlan Ellison
posted on June 25, 2002 09:55:55 AM new
Thanks to everyone for all the encoragement. It really does make a difference.
I haven't had a chance to get back to the board to reply until now. Even now I only have a few minutes as I'm at work.
When I went to the hospital on Sunday I found they were in the middle of transfering him to another hospital because they thought he had had another heart attack.
Luckly after all the test it turned out not to be another attack, but he still has a lot of fluid in his lungs.
Part of the finacial problem is that my parents have been separated for a number of years, but have never divorced.
Thanks again to eveyone who replied, I'll check back later when I have time.
It just seems that something is happening all the time and I don't have a second to get my thoughts togeather.
