My girlfriend's father can't care for himself - how do we get help for him?
July 5, 2010 12:40 AM   Subscribe

What resources are available (specifically in the state of Iowa) to assist elderly/disabled persons who require full-time care but lack the funds to be able to afford this on their own?

My girlfriend's father is in his 60's and is now disabled - after dealing with having only one arm and missing several fingers on his one hand his whole life (quite successfully, against odds, such as owning and operating a motorcycle), he has now had several strokes, at least one of which has affected his hippocampus and energy centers to the point where he can no longer stand, walk, or even go to the bathroom on his own. Compounding this are several other medical issues, including diabetes (and diabetic necropathy from checking his blood sugar once a week, and taking insulin if he gets really tired, not per instructions).

Medicare was paying for him to be taken care of in a nursing home, but due to several factors he is no longer there. His mentality is that all traditional medicine is designed to make doctors and the health care system money, and that only through homeopathic medicine/supplements/acupuncture and other "alternative" therapies can one be helped, and even his stroke symptoms and diabetes cured. He acted with aggression and paranoia (e.g. the nurses wanted to kill him, and were actively trying to harm him) while under the care of the nursing home. He eventually found an electric wheelchair and purchased it, and essentially demanded that he be released to his home.

His wife talked with the home's management and received assurances that should he be unable to be cared for at home, he could return. The situation at home turned from bad to worse. She has had to clean up his messes as he is unable to move to get to the bathroom (he now wears diapers to alleviate this problem), he has been found on the floor and firefighters had to carry him around the room, and various other issues that his wife is simply unable to deal with. She works full-time and simply can't care for him, and is unable to afford a caretaker. She cannot handle the situation, but when talking to the nursing home, they found various excuses such that they can avoid taking him back. So right now, he is stuck where he is.

On top of this, he and his wife have had marital issues for many years now, and the stress of the situation has brought this to a breaking point. My girlfriend's mother is leaving her father and moving 2000 miles away, as having him refuse medical care was the last straw for her. His desire at this point is to move out to a tiny little town in Iowa, about 30 miles away from any health care, and rely on various herbs, acupuncture, and diet changes to cure himself, by himself. Of course this will mean that he, in short order, will pass away.

Neither his wife nor his daughter are qualified to care for him. He needs full-time care from medical professionals, who can not only tend to his medical needs, but also help him move his large (6'4", 200+ lbs) frame around when he lacks all mobility on his own. The family doesn't have funds to pay for him to get help. They obviously know what will happen if he moves off on his own. He is mistrustful of all medical facilities, and one thing that he absolutely needs due to increasing depression and lack of a will to try is continuous psychological help as well.

Is there anything out there that might help in this situation? Who can we turn to in order to find assistance in dealing with this? I feel helpless at this point, and could really use some advice.

Thank you.
posted by khelvan to Health & Fitness (12 answers total) 3 users marked this as a favorite
I'm sure more educated responses will follow, but at the very least you should be talking to a social worker. If I have this straight, the one-armed man's wife is the one leaving? You can probably go through Medicare for a lot of this, but there are people out there whose job it is to know all the options you have available to you. In the event that home care is not an option, he may have to compromise on those "several factors" you mentioned.
posted by rhizome at 3:26 AM on July 5, 2010

Talk to someone at the local Area Agency on Aging (link is for Iowa). They are the best starting point for this kind of situation.
posted by shiny blue object at 4:24 AM on July 5, 2010

I've just gone through this with my own father with analogous circumstances of crazy, and I feel your pain.

My father, like your father in law, is 65 years old, 6'4", 200+ lbs, has diabetes and has suffered recurrent strokes in the last five years. He also needs a hip replacement, so while he does have two arms, he has limited mobility. He has been depressed for his entire adult life. He also drinks, and has been a heavy alcoholic for 40 years.

He cannot cook, does not take his medication, cannot remember from day to day how to use his insulin, and in the last couple of years has stopped doing laundry, bathing and attending to the most basic forms of personal care, including eating.

Despite the utter disaster of this situation, he refused residential care and/or was not eligible for residential care, depending on what day of the week it was.

We worked with social workers, elder organisations, visiting nurses, home help and personal carers, voluntary organisations, a family lawyer, everyone.... and what it boiled down to was that unless we went to court to have him declared incompetent, there was absolutely no way to force him into the residential care he needed. At the same time, residential care that would have been acceptable to my father (allows unlimited drinking and smoking) doesn't exist, in the same way it very likely does not for your father in law (alternative medicine only).

That essentially put us in the position of waiting for him to collapse in a diabetic coma and die of dehydration since there was nobody around to call an ambulance after his partner was no longer there.

You may well end up in a very similar sub-optimal situation, with your FIL at home or his house in the country, looking at similar circumstances. If he refuses residential care and medical treatment, the best you may be able to do is work with social services and medicare and Meals on Wheels and anyone else you can find to get his some level of help at home while the situation deteriorates into even more insanity. If that is all he will accept, that is all you can do even though it feels absolutely crazy.

Eventually, exactly what I predicated did happen, and my father is now in the hospital in a coma. He was found by someone dropping off some mail; he could have just as easily not been found and died. That's a risk you run in a situation like this, and yes you are powerless and hopeless in the face of that risk. Accepting that the worst may happen because someone cannot make good choices for themselves is pretty much all the zen you'll get.

In my situation, my father is now too ill to be released into his own care and the hospital will only discharge him to a residential facility. We're pretty sure he will no longer have the mobility to leave a care home at that point, thus solving that problem. It's possible if not likely that a similar situation may pan out with your father in law.

So there you have it. Based on my own experiences, lining up services he will accept wherever it is he chooses to be may be the best you can do, and I guarantee you that if it's the case, it will not feel like it's anything near enough.

Sorry for the length, I just wanted you to understand that I really, really know where you're coming from with the crazy aging parents.
posted by DarlingBri at 6:23 AM on July 5, 2010 [4 favorites]

Yeah, this is a question for both your county elder service and disability advocate agencies, they may be able to provide your father with services in his own home that he finds amenable or can provide you with referrals on where to find them. Early 60s is a little on the young side for elder services and depending on what resources are locally available he might not be eligible for them, which is why I would recommend also checking with the disability advocacy community.
posted by The Straightener at 6:40 AM on July 5, 2010

Check out the Heritage Agency on Aging. Not sure where in Iowa you are (the agency is in Cedar Rapids), and not sure how far they'll travel or whether they have satellite offices.

I do know that they will provide a coordinator free of charge that can hook you up with all different kinds of services to meet your needs. This person will visit her father at his location to make an assessment and talk with him, and will then work to find just the help he needs. This can range anywhere from a home health aide to just a cleaning service. I'm not sure how or if they take finances into account, but I'm sure they've got that covered.

I have not used these services myself, but will as soon as my grandparents give the green light for extra help (damn those independent octogenarians! ;)

Best of luck!
posted by wwartorff at 6:54 AM on July 5, 2010

Response by poster: Thank you so very much for the suggestions so far. He is currently living in Cedar Rapids with his wife, and we are visiting to help out - we won't be leaving until we can find him some immediate care, as his wife cannot handle the situation on her own.

The area he wants to move to is his mother's old house in a rural area near Central City. For quite some time he had free health care with the University of Iowa, was living in CC and would drive an hour to Iowa City if he needed something, but he has not had that for months now, and I'm not quite sure why he lost it.
posted by khelvan at 8:58 AM on July 5, 2010

Aggression and paranoia sound like he may be developing dementia, as well. There are homes that are experienced with and knowledgeable about dementia, and able to handle patients who are paranoid and aggressive but need full-time care. It will probably help to look into these, or other care options for people with dementia.
posted by galadriel at 9:15 AM on July 5, 2010

Response by poster: Galadriel - normally I would agree with you, but this is something that has been present for his entire life, or at least growing in strength for as long as my girlfriend has known him. His aggression was certainly present as she was young, and not necessarily directed outside the family. He has had her working with him on alternative energy and foods, and had a mistrust of traditional medicine, since she was young. So while dementia may be a possibility, I don't think his aggression and paranoia can be attributed to it.

His stroke may have altered his outward demeanor, however. His own mother was a racist, and he used to scold her for saying racist things in front of my girlfriend...but now, in the nursing home, he was disparaging toward minorities, and we're not sure why, given that he never did that in the past.
posted by khelvan at 10:09 AM on July 5, 2010

Small world! My grandparents still live on their farm outside Central City. Ask him if he knows the Warbasses. My grandmother was a teacher and principal in the CC school system for many, many years, and I think my dad and your gf's dad are around the same age.

Definitely contact Heritage. They are a conduit to all other types of services, so you don't have to go hunting around on your own.

If he's a veteran or can still get care at U of I, I might try to convince him to move closer to IC. But good luck with THAT.
posted by wwartorff at 10:15 AM on July 5, 2010

Two things to keep in mind while you're looking into this situation.

One, if he's developing dementia (which based on your description and my experience, sounds possible) please be aware that he may not be demented enough to qualify for incompetency or power of attorney or dedicated care facilities. My father's partner was happy to go to alzheimer's day care; my father was not. My father's partner was far gone enough that we were able to arrange power of attorney and medical proxies for him; my father is not.

Two, if it looks like your father in law really is going to move, please be aware that any services you put in place now have a very high likelihood of falling apart as soon as he moves. There are, for example, three Meals on Wheels in Cedar Rapids; there are none in Central City. Any county-based or local-volunteer-based systems, including his social worker, will not move with him. You will have to start virtually all over again, and what you can put together there may be better or it may be worse.

Sorry, but it's better to know that so you can pace your efforts to what his plans look like for the next few months.
posted by DarlingBri at 10:15 AM on July 5, 2010

Galadriel - normally I would agree with you, but this is something that has been present for his entire life, or at least growing in strength for as long as my girlfriend has known him.

This doesn't surprise me, and is great example of why engaging in this kind of distanced diagnostic exercise by unqualified people on AskMe is continually frustrating. Dementia? In his early 60s? The behavior described here could be any number of things, including a number of different mental health disorders that have nothing to do with age or aging or they may not be symptoms of any disorder at all. In fact, it seems to me that he has a very clear idea of where he does and doesn't want to be, what type of help he does and doesn't want to receive and how to go about advocating for these outcomes to be achieved, regardless of the fact that his loved ones may disagree with his decisions and are frustrated by them. I was going to say something and decided not to, but now that the OP is confirming my original suspicion that this likely has nothing to do with dementia, I want to ask people to lay off not only diagnosing disorders but also suggesting that the OP's father be institutionalized based on that wrong headed conclusion when the man clearly doesn't want to institutionalized and already took steps to get away from one institution, already.
posted by The Straightener at 12:49 PM on July 5, 2010 [1 favorite]

But whether or not it is genuinely dementia (and early 60's or not, it *certainly* could be with noticeable brain damage post-strokes), support staff who are experienced in dementia patients can help with aggressiveness and paranoia. That's one of the things they know how to do, because they have to.

The Straightener, if he cannot care for himself and he has no one at home to do it, what exactly can his family do but find him a situation where he can be cared FOR? Did you even read all the physical problems the man has? His wife is leaving him, his daughter is only visiting temporarily to try and help, he can't take care of himself, and he doesn't have the money for home care.

The fact that he left an institution on his own does not indicate that he *can physically* be out of one.
posted by galadriel at 4:24 PM on July 5, 2010

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