How should I deal with my Alzheimer's father?

April 20, 2009 10:40 AM

How should I deal with my Alzheimer's father? I have had problems with my father going back ages. He has been verbally, emotionally, and physically abusive to not only me, but my sibling and mother as well. I had almost convinced my mom to leave him when he got Alzheimer's, and now we're stuck caring for him.

I say "stuck" because he has 6 other adult children (from 2 previous marriages!) who have provided us with little help.
The fact of the matter is that I have hated him for a long time, and mostly just avoided speaking to him, being near him, etc. (difficult to do when you're living under the same roof). When I did have to confront him (to defend my mom or bro), I would do it, though I'd be scared out of my mind, because it was okay to go after someone who's just a jerk.

Now that he's sick, however, I can't do it anymore, partially because of my own sensibilities (can't attack the weak) and partially because of what others would say or do.

Problem is, he's no less of an a**hole than when he was healthy. A few days ago, he ended up hitting me (just on my arm) after I tried explaining to him that no, we aren't keeping his money, it's just that he keeps losing it after we give it to him. Today, I told him to please not put some dusty records on top of our clean dining table (I care for him in the mornings before heading off to work and class in order to help my mom out), and he responded "F**k you b**ch, idiot, useless, worst child I've ever had" (mind you, none of the others have cared for him), etc.
It's killing me to not be able to retaliate. I feel so powerless, and I hate that more than anything. I want to just stick him in some home, or leave myself, but neither one of those are options right now. In the meantime, my brother (who has his own problems, i.e. teen with an Autism spectrum disorder) is acting up, my mom is stressed to the point of becoming physically ill, and I'm having a hard time focusing on getting my stuff (e.g. schoolwork) done.

So what can I do? Yoga? Stay outside the house more? Don't say therapy, I'm already doing that but it's not enough for just getting through the day-to-day stuff. The powerless thing is probably the clincher - if I felt stronger, I could probably handle it better.

Sorry this is so long; I think I partly needed to rant, in addition to looking for some answers. Thanks to anybody who can provide help.

posted by anonymous to Human Relations (18 answers total)

Ironically, a month ago I researched a brief article on the options available to the people caring for loved ones with Alzheimers...("loved ones" in this instance meaning "family members", mind.)

Fortunately, there are a number of resources available to those caring for Alzheimer's patients. The stress involved in caring for someone with Alzheimer's is severe enough that it's become its own syndrome in some circles, which means that there are programs specifically designed to help people cope with it.

I'd talk to your father's doctor and see if he can put you in touch with any support groups or other facilities -- I know this sounds like "yech, more therapy", but there's a difference between talking to a therapist who sometimes feels like they have some kind of agenda, and talking to someone who is actually in the same trenches you are and so you BOTH can say "man, this sucks." "yeah, totally."

And encourage your mother to also look into some of the other programs -- they have everything from adult day care to home nurse care to the like, and your father's doctor's office, if they're worth their salt, should be letting you know about such programs so you can even just use them once in a while to give yourselves a break.

There is no shame in asking for this kind of help -- even people who have Ozzie-and-Harriet-perfect relationships with their families get the wind knocked out of them by Alzheimer's, and everyone can only do so much. Doctors recognize this.

Good luck.
posted by EmpressCallipygos at 10:49 AM on April 20, 2009 [3 favorites]

You can move.

As his wife, your mom has the responsibility to decide what to do about her marriage and her husband. Be there for her emotionally, but take care of your health by moving out.
posted by Houstonian at 10:50 AM on April 20, 2009

Adult day care (may be problematic with his bursts of violence) or having a home nurse come in are good options. There may be free or reduced cost respite services in your area for people caring for their relatives - while it doesn't take him off of your hands, it will give you and your mom a break to get out and do something fun.
posted by The Light Fantastic at 10:54 AM on April 20, 2009 [1 favorite]

It sounds like your other siblings have very good reasons for not helping out. I'd recommend you do the same.

Love, respect, and loyalty are earned--he's not entitled to anything from you.
posted by A Terrible Llama at 11:00 AM on April 20, 2009 [2 favorites]

Check out the book 'How We Die.'

It has an amazing chapter on Alzheimer's and the brutal emotional toll it can take on the family, as well as ways to help get through.

There are also support groups you can go to that, though they don't solve the problem, help you understand along with people who have been there.

To the poster who said to abandon him, shame on you. The man is a human being who deserves compassion like anyone else, not matter what his transgressions. If anything, the only way to step out of the father's hateful shadow is to rise above it. Otherwise you will bear that hate for the rest of your life, and it will continue to seep through the generations.
posted by infinitefloatingbrains at 11:57 AM on April 20, 2009 [5 favorites]

Anonymous, I so sympathize with you. You are under a lot of pressure and the resources that are available to people in your situation will be helpful in the long run, such as caregivers groups, Adult Day programs, etc.

MefiMail me for some suggestions for the short run, I promise I will keep your confidence.

I am pretty sure I know the perfect technique for you that will help you blow off the stream without doing anything you might regret, and it's not punching pillows or screaming in the car or meditation (not that all that isn't great, but I have a sense that that's not what you're asking here).

Anyway, Memail me, I think I can help.
posted by Grlnxtdr at 12:12 PM on April 20, 2009

People with certain types of dementia can develop behavioral problems that go as far as verbal and physical abuse (and alot more than a slap). As dementia advances, the person loses the prefrontal areas of the brain responsible for behavioral inhibition. He won't care about what's appropriate and he won't be able to constrain his actions to take into account what others think.

He could get alot worse than he was when he was healthy, and you could be in danger, and unfortunately it's not uncommon for caregivers to rationalize it, thinking "they've always been this way and I have to keep doing this because they're sick." Don't let it get to the point where he's routinely hitting you. Many nursing homes wouldn't even take someone who has reached that point unless they're specifically equipped to deal with advanced dementia. If he gets worse, it's time to talk to a social worker or someone else who can explain what options and funding help exists for your case. Thinking that you just need to toughen up won't be enough when the day comes that he's waving scissors or something at you (seriously).
posted by slow graffiti at 12:16 PM on April 20, 2009

I want to just stick him in some home, or leave myself, but neither one of those are options right now.

Yes, they are.

You (or your mother, or both of you) should make an appointment to speak with a social worker about placing him in some sort of institutional care. There may be options that are affordable, for small values of affordable. Eventually Medicaid can kick in; there are some protections for your mother.

If he hits, call the cops. Let them deal with him overnight. Possibly, build a case to have him involuntarily committed to the State's care as a danger to others.

Or just leave, if you're of age.

I mean, look. Your father's life is going to be shit now no matter what you do; that's done. He faces the remainder of his life being really awful as a result of his own behavior and this terrible affliction -- but that point is that no matter how much you do, his life is still going to suck.

So here you are. Right now, one person's life is being ruined in a way that is completely unavoidable and relentlessly certain. Your real choice is whether you're going to allow your father's inevitable decline to ruin your life too, or not.

Your mother seems to have decided that she's going to go down in flames with him, fucking up your brother as collateral damage. That's her decision. It does not need to be yours as well.
posted by ROU_Xenophobe at 12:17 PM on April 20, 2009 [5 favorites]

To the poster who said to abandon him, shame on you. The man is a human being who deserves compassion like anyone else, not matter what his transgressions.

The family, and especially the wife who actually consented to be involved with him, have some responsibility to see that he receives an acceptable level of care. They have no responsibility to provide that care themselves.

If anything, the family caring for someone in a situation like this is probably the worst of all possible worlds for all concerned -- you want the people taking care of him not to have an entire life's worth of emotional baggage from him being an asshole, and to be people who take care of him as a job and then go home and put that job away for the night.
posted by ROU_Xenophobe at 12:20 PM on April 20, 2009 [8 favorites]

Well said - I didn't mean that he should be personally cared for by the family - this is impossible since they are not trained for the kind of behavior that will come up.

It was more in response to the poster said 'he's not entitled to anything from you.' He is. Like you said, they "have some responsibility to see that he receives an acceptable level of care."

Also, if a solution for the father's care is found, the rest of the family may finally chip in. Its possible that they were hands off in the first place because they didn't want to provide care themselves, and when they see that there is another way, might help.
posted by infinitefloatingbrains at 12:54 PM on April 20, 2009 [1 favorite]

His wife does. I don't agree that children really have any responsibility toward their parents; that flows entirely in the other direction. The children's responsibility here stops pretty much at not going out of their way to treat him worse than they would some random stranger.

Anonymous could walk away from the whole situation and still be a perfectly fine person, as far as I care. People leave families with abusive members behind all the time, and should do so more frequently.

As well, I think this:

If anything, the only way to step out of the father's hateful shadow is to rise above it. Otherwise you will bear that hate for the rest of your life, and it will continue to seep through the generations.

... is well meaning but empirically incorrect. As an empirical matter, it seems that the way to step out from your father's hateful shadow is just to step out and walk away.
posted by ROU_Xenophobe at 1:34 PM on April 20, 2009 [1 favorite]

I don't agree that children really have any responsibility toward their parents; that flows entirely in the other direction. The children's responsibility here stops pretty much at not going out of their way to treat him worse than they would some random stranger.

Anonymous could walk away from the whole situation and still be a perfectly fine person

Yes, this is what I was trying to get at earlier....
posted by A Terrible Llama at 1:48 PM on April 20, 2009

For those saying that the patient's wife should bear the responsibility, according to the OP, she was "this close" to leaving him before he was diagnosed. OP seems to be much closer to him mother than his father, so I think he would feel badly/guilty if he said "see ya!" to his mom and left her in sole charge of dad's care.

OP, you mentioned other children from previous marriages - even if they're not willing/able to provide in-person care, would they be willing to contribute financially if you found a suitable assisted-care facility for dad? If they have the means, it might alleviate any guilt they might be feeling if they could just send you (or your mom) a check each month to help cover the cost of dad's hospitalization. That way they're helping without actually having to get "involved," and it would reduce you and your mom's contact with dad to daily/weekly shorter amounts of time during which you could tolerate his hurtful words and behavior.
posted by Oriole Adams at 2:15 PM on April 20, 2009

paranoia is common in alzheimer's. if he expresses it through violence, you've got every right (and a responsibility) to get him into a more controlled setting. one reason people with alzheimer's get violent is because they are afraid and confused and feel like they are in danger. so they strike out at perceived threats. a controlled care setting will be as good for him as it is for you.

and hit up your siblings for some cash for his care.
posted by thinkingwoman at 6:55 PM on April 20, 2009

I suggest that your concern from now on should be for your mother. Do what you can to make her life easier. Lighten her load in any way you can. Maybe that means being a good listener. It probably means accepting and understanding her choice to stay with him. Sounds like your siblings aren't helping her, which sucks, so to the extent that you care for her, be of aid and comfort. It's not going to be easy, but you need to change your thinking that this situation is about your father, and because he's a jerk you get to run away. Become your mother's advocate with your siblings. Get them to help for her sake.
posted by conrad53 at 10:10 PM on April 20, 2009

Anon, I think that you need to do what is healthiest for you. The people who would give you crap for putting your father in institutional care are not your true friends. I told my mother six years ago that I wanted nothing more to do with her because of the symbiosis and abuse...and I think it was the sanest, most healthy thing I could have done.

One of the myriad reasons why is because she blew me off when I told her that one of my grandmother's caregivers had been leaving her alone; she had also been told by the other caregiver and a woman who worked for someone else in the building that this caregiver was being abusive. She did nothing until it escalated and she was forced to deal with it.

If my mother becomes incapacitated, it will be my brother who will have to deal with it. If he refuses to do so, she will become a ward of the state.

Good luck!
posted by brujita at 10:18 PM on April 20, 2009

Just for emphasis, you are the person you should be most concerned about. Take good care of yourself. Look for ways to disengage yourself from this situation. Getting Dad into an Alzheimer's care facility would be excellent. Otherwise, you and your mom need outside support. Find a support group and go every week. (Google: Alzheimer's support group) And best of luck with this.
posted by exphysicist345 at 11:56 PM on April 20, 2009

I just wish the Alzheimer's associations would stop portraying people with Alzheimers as sweet grannies rocking and smiling to themselves. One of the first things I learned when my mum was diagnosed is that there are different sets of symptoms of Alzheimers, depending on which area of the brain it attacks first. And that violent behaviour is not at all uncommon.

Are there any geriatric specialists in your area or an Alzheimers support group? It's all depressing news, but information you need to decide how much of what can be done. I don't think your mum should be left alone with a man who hits her. We arranged for my mum to go into a locked retirement home type facility years ago where she turned out to be very happy, much to our surprise. That's not what we were expecting from someone who wouldn't eat or take her meds as she thought we were poisoning her, who took a hammer to my steel doors and ceramic kitchen counters (sob!), and who skulked around the house at night scaring us half to death when we woke up with her bending over us, glaring. That was fifteen years ago. She was transferred to a nursing home last year and will probably die sometime in the next couple of years. My mum is 92. My doctor told me that, for some reason he doesn't understand, Alzheimers patients will often remain physically healtier than other people their age. Hardly seems right, but that was his experience, and is borne out by what we've seen with my mum. So, think long term when you're making decisions.

And, btw, I my mum had been an abusive mother with whom I deliberately limited contact in the past. We tried looking after her at home after she got sick, but it didn't work. I visited the retirement home infrequently and only when necessary. She made this easy for me, as she used to literally chase me out of the home screaming that her illness was all my fault and that I was evil. Don't waste your time feeling guilty.
posted by x46 at 12:49 AM on April 21, 2009 [1 favorite]