Have you cared for a dementia sufferer who hasn't accepted their illness?
November 18, 2015 6:29 AM Subscribe
This month the progress of my father's dementia came to a decision point, as his drivers license was suspended on Halloween. Getting him to give up driving has been fraught, as one might expect. I've been kicked out of his house twice now, but have ultimately managed to get him to stop driving. I don't blame him, as I know it's his illness, but I'm left wondering if I have to accept that he is incapable of cooperating at all in getting him the care he needs.
My father lives in Michigan and I live on the east coast. I'm single and an only child. My parents are long divorced and my mother is in a good and secure situation already. My father has lived on his own since I went off to college over 25 years ago. He currently has a girlfriend (who also has dementia), with whom he does not live. They each have their own place about a mile away from each other. She doesn't drive and his new loss of driving privileges are an issue here, especially as they are very good for each other.
I (and much of my extended family on my dad's side) have been aware that he's been slipping. I've tried encouraging him to take steps so he could get care when he reached the point where it was necessary, but he always brushed me off. Stubborn and independent. I'd been trying less gently this past year to suggest making some sort of plan, but that just got him mad and yelling at me. The loss of the license, though, means it can't wait and I have to act. I've presently got the support I need via lawyers, health care providers, social workers, and law enforcement to get him the help he needs at this stage of his illness and beyond.
However, so far my dad's reactions to everything make me think that he will not be able nor willing to cooperate at all, meaning I'll have to get him forcibly placed.
What I'd like to hear about is if you have been through this with someone who suffered dementia and was initially incredibly resistant to accepting help and giving up their independence. Has anyone started there and actually gotten their loved one with dementia to accept their illness, or at least to accept the changes that their illness is forcing on them?
I'm prepared to do whatever I have to do to make sure my dad ends up in good care, and can still see his girlfriend and is in a good place. I'm resigned to that including forcing him into care if he won't go willingly, but before I completely close the door on him accepting care, I just wanted to see if that ever panned out for anyone.
My father lives in Michigan and I live on the east coast. I'm single and an only child. My parents are long divorced and my mother is in a good and secure situation already. My father has lived on his own since I went off to college over 25 years ago. He currently has a girlfriend (who also has dementia), with whom he does not live. They each have their own place about a mile away from each other. She doesn't drive and his new loss of driving privileges are an issue here, especially as they are very good for each other.
I (and much of my extended family on my dad's side) have been aware that he's been slipping. I've tried encouraging him to take steps so he could get care when he reached the point where it was necessary, but he always brushed me off. Stubborn and independent. I'd been trying less gently this past year to suggest making some sort of plan, but that just got him mad and yelling at me. The loss of the license, though, means it can't wait and I have to act. I've presently got the support I need via lawyers, health care providers, social workers, and law enforcement to get him the help he needs at this stage of his illness and beyond.
However, so far my dad's reactions to everything make me think that he will not be able nor willing to cooperate at all, meaning I'll have to get him forcibly placed.
What I'd like to hear about is if you have been through this with someone who suffered dementia and was initially incredibly resistant to accepting help and giving up their independence. Has anyone started there and actually gotten their loved one with dementia to accept their illness, or at least to accept the changes that their illness is forcing on them?
I'm prepared to do whatever I have to do to make sure my dad ends up in good care, and can still see his girlfriend and is in a good place. I'm resigned to that including forcing him into care if he won't go willingly, but before I completely close the door on him accepting care, I just wanted to see if that ever panned out for anyone.
I'm not sure too many of them ever "accept" it. They certainly know something is wrong and they become frightened and that often leads to denial and outright hostility. But, in my experience, the disease progresses in a way where "acceptance" is never a stage they encounter. Their mind is too damaged to engage in a sophisticated process like "acceptance". At least, that's been my experience. I'm sorry.
posted by Thorzdad at 6:38 AM on November 18, 2015 [8 favorites]
posted by Thorzdad at 6:38 AM on November 18, 2015 [8 favorites]
FWIW, there have been a couple of Alzheimer's sufferers in the support group I belong to who are still cognitive enough to deal with the idea of acceptance, and have made their peace. They both were hit by early-onset Alzheimer's which, at least in their cases, progressed far more slowly than what my mother suffers from, and that allowed them to intellectually deal with it.
posted by Thorzdad at 6:42 AM on November 18, 2015 [1 favorite]
posted by Thorzdad at 6:42 AM on November 18, 2015 [1 favorite]
Combativeness is part of the pathology, really. It's not just the stutters in short-term memory, which are terrifying AND it's instinctual to make up explanations to yourself and also pretend to others that there's no problem, as cognitive function decreases it takes behavior with it.
You can't think of this as if he knows what's going on and is making a choice to behave this way. The disease takes away his ability to mitigate the disease. He doesn't understand why you're doing these things to him. He doesn't understand why somebody is fucking with him, but clearly someone is because everything was fine and now it's not and he didn't change anything!
Most traumatic brain injuries (and this is similar) involve loss of impulse control and what's called "executive function" - that page is a pretty thorough, if grim, description of what failing executive function means.
And while it is possible for people with cognitive failure to, at least in moments, "accept" that they are sick, that acceptance doesn't change the fact that brain damage makes you paranoid, unable to store new information, unable to perform etiquette and self-control. They can "accept" and make peace with their illness on Tuesday morning and still try to escape the hostage situation you're holding them in after lunch because the survival instinct is strong and why else would you be holding them hostage unless you mean to harm them?
You can't reason your way out of dementia any more than you can put out a 3-alarm fire from inside the house.
posted by Lyn Never at 7:00 AM on November 18, 2015 [9 favorites]
You can't think of this as if he knows what's going on and is making a choice to behave this way. The disease takes away his ability to mitigate the disease. He doesn't understand why you're doing these things to him. He doesn't understand why somebody is fucking with him, but clearly someone is because everything was fine and now it's not and he didn't change anything!
Most traumatic brain injuries (and this is similar) involve loss of impulse control and what's called "executive function" - that page is a pretty thorough, if grim, description of what failing executive function means.
And while it is possible for people with cognitive failure to, at least in moments, "accept" that they are sick, that acceptance doesn't change the fact that brain damage makes you paranoid, unable to store new information, unable to perform etiquette and self-control. They can "accept" and make peace with their illness on Tuesday morning and still try to escape the hostage situation you're holding them in after lunch because the survival instinct is strong and why else would you be holding them hostage unless you mean to harm them?
You can't reason your way out of dementia any more than you can put out a 3-alarm fire from inside the house.
posted by Lyn Never at 7:00 AM on November 18, 2015 [9 favorites]
Long distance care for demented people is no care. Attempts to exert.control will inevitably result in hostility. Now one mile separates your dad from his love source, and it is winter. Do you suppose he will take up walking in winter weather to care for his demented girlfriend? Did you check for bus service? How will he shop for himself? Did you check in with local social services for means to get help for him? Perhaps he is still two years away from forcible admission. The social services people can test him to make sure he is or isn't safe. My parent had to be forcibly removed and committed. The institution told me to.check back in in a couple of months. I confiscated the phone so parent had to deal with settling down.
posted by Oyéah at 7:48 AM on November 18, 2015 [2 favorites]
posted by Oyéah at 7:48 AM on November 18, 2015 [2 favorites]
Look up anosognosia. Many have no awareness of the illness at all.
Go get The 36 Hour Day and read it now.
posted by Sophie1 at 7:53 AM on November 18, 2015 [8 favorites]
Go get The 36 Hour Day and read it now.
posted by Sophie1 at 7:53 AM on November 18, 2015 [8 favorites]
All of the above comments match my experience as well.
I would add as a reference the blog Alzheimer's Reading Room, which has some useful material on it.
My mother never stopped being combative and cranky, even when she was in hospice at the very end. AD removes filters, impairs judgment, and leads to fear and paranoia because the sufferer knows there's something wrong but no longer has the capacity to understand or manage it. For many of them, this results in blaming the outside world, and the people closest to them (like my poor father).
I'm very sorry for you and your father. Best of luck.
posted by suelac at 8:41 AM on November 18, 2015 [1 favorite]
I would add as a reference the blog Alzheimer's Reading Room, which has some useful material on it.
My mother never stopped being combative and cranky, even when she was in hospice at the very end. AD removes filters, impairs judgment, and leads to fear and paranoia because the sufferer knows there's something wrong but no longer has the capacity to understand or manage it. For many of them, this results in blaming the outside world, and the people closest to them (like my poor father).
I'm very sorry for you and your father. Best of luck.
posted by suelac at 8:41 AM on November 18, 2015 [1 favorite]
I'm sorry to say, that the majority of family members dealing "with someone who suffered dementia and was initially incredibly resistant to accepting help and giving up their independence" end up forcing a person into care of some kind. Quite often, this means waiting, agonized, for a crisis bigger than the situation (hospitalization, wandering which results in police involvement, car accident) to occur. There may come a time when he forgets he had a car or a girlfriend, but the chances of him being able to create or accept solutions appropriate to his decline are pretty much null. YOu are also not going to be able to predict or control the rate or manifestation of his decline.
Get in there.
Sophie's advice on understanding agnosia is spot on.
posted by Riverine at 8:54 AM on November 18, 2015 [3 favorites]
Get in there.
Sophie's advice on understanding agnosia is spot on.
posted by Riverine at 8:54 AM on November 18, 2015 [3 favorites]
They were trying to take the carkeys back from my friend's husband's grandmother and she was getting increasingly combative about it, and increasingly forgetful, so they were having the argument "where are the carkeys, I left them on the hook last night" "remember, grandma, we took them away because you can't drive anymore" "what, that's nonsense, why would you deliberately misplace the keys, are you insane" argument three times a day... and then six... and then nine. So finally one of the granddaughters had a brainstorm. She put the keyring back on the hook where it had always been, but she put a similar-looking but wrong carkey on it. So nine times a day and then twelve and then fifteen, the grandmother would grab her keys off the hook and go out and try to start the car and then come in baffled and shaking her head, "Crazy key must have gotten bent somehow, must call a locksmith," but not angry or feeling betrayed. Lowered everybody's cortisol levels, at least. There's no cure, but there are a few mitigating strategies for a few things that can make it slightly less painful for everybody in the middle stages.
posted by Don Pepino at 10:03 AM on November 18, 2015 [23 favorites]
posted by Don Pepino at 10:03 AM on November 18, 2015 [23 favorites]
Just to echo Sophie1, et al., this is what we've experienced with my MIL. An extra awful aspect of the whole mess is that she has no idea how much her cognitive ability has declined so she doesn't understand what all the fuss is. It sounds like that could be going on with your father: in his head, he is perfectly fine and everyone is treating him like a baby.
I'm sorry you are dealing with this. Good luck and take care of yourself, too.
posted by Beti at 10:17 AM on November 18, 2015
I'm sorry you are dealing with this. Good luck and take care of yourself, too.
posted by Beti at 10:17 AM on November 18, 2015
Seconding Alzheimer's Reading Room as a great resource. Use the search field to find answers. There's a lot hidden in there.
Also, be aware that there are multiple types of dementia. Although Alzheimer's is the most common, it's worth knowing about the other types - Lewy Body, frontotemporal, vascular, etc. .... and the any of these can coexist in the same person.
It's important to understand that not all cases follow the typical trajectory of Alzheimer's. Patients with different kinds of dementia have different cognitive issues, including the ability to notice their own decline.
In addition to keeping your dad safe, which it sounds like you're doing, you can help him feel safer by interacting with him in ways that don't feel confrontational. Have a look at Teepa Snow's work for more on that. Best of luck.
posted by 6thsense at 10:55 AM on November 18, 2015 [3 favorites]
Also, be aware that there are multiple types of dementia. Although Alzheimer's is the most common, it's worth knowing about the other types - Lewy Body, frontotemporal, vascular, etc. .... and the any of these can coexist in the same person.
It's important to understand that not all cases follow the typical trajectory of Alzheimer's. Patients with different kinds of dementia have different cognitive issues, including the ability to notice their own decline.
In addition to keeping your dad safe, which it sounds like you're doing, you can help him feel safer by interacting with him in ways that don't feel confrontational. Have a look at Teepa Snow's work for more on that. Best of luck.
posted by 6thsense at 10:55 AM on November 18, 2015 [3 favorites]
So finally one of the granddaughters had a brainstorm. She put the keyring back on the hook where it had always been, but she put a similar-looking but wrong carkey on it.
This is EXACTLY right. One of the best things I learned from the 36 hour day was, Don't Argue, Reason or Explain (DARE). It will cause more confusion (which leads to anger, paranoia, humiliation, distrust, etc.) in the person with dementia and irritation leading to anger for the caregivers. Distraction is good. Explaining the reason that he can no longer safely drive is a recipe for frustration for both of you. It seems really counterintuitive, but that is dementia for you.
If you have any specific questions, do feel free to me mail me, I'm a caregiver in the thick of late stage 6/ early stage 7 right now.
posted by Sophie1 at 11:23 AM on November 18, 2015 [4 favorites]
This is EXACTLY right. One of the best things I learned from the 36 hour day was, Don't Argue, Reason or Explain (DARE). It will cause more confusion (which leads to anger, paranoia, humiliation, distrust, etc.) in the person with dementia and irritation leading to anger for the caregivers. Distraction is good. Explaining the reason that he can no longer safely drive is a recipe for frustration for both of you. It seems really counterintuitive, but that is dementia for you.
If you have any specific questions, do feel free to me mail me, I'm a caregiver in the thick of late stage 6/ early stage 7 right now.
posted by Sophie1 at 11:23 AM on November 18, 2015 [4 favorites]
Oh, the other really helpful thing I learned was to focus on feelings, not facts.
If something makes the person with dementia have good feelings (cookies, his/her career, talking about a future trip), it doesn't matter if the trip is actually going to be taken or if there are actually cookies. It matters that the talk of the trip makes the person feel good and those feelings are going to last a LOT longer than remembering what the conversation was actually about. Conversely, he or she may have no memory of an angry conversation, but the bad feelings will still be there long after the conversation is over and you will likely have a hard time getting buy in on anything else.
posted by Sophie1 at 1:18 PM on November 18, 2015 [5 favorites]
If something makes the person with dementia have good feelings (cookies, his/her career, talking about a future trip), it doesn't matter if the trip is actually going to be taken or if there are actually cookies. It matters that the talk of the trip makes the person feel good and those feelings are going to last a LOT longer than remembering what the conversation was actually about. Conversely, he or she may have no memory of an angry conversation, but the bad feelings will still be there long after the conversation is over and you will likely have a hard time getting buy in on anything else.
posted by Sophie1 at 1:18 PM on November 18, 2015 [5 favorites]
Right now. She constantly says things like "I'll always remember this" every time we do something big, like a birthday outing or what have you. I think she's forgotten she has dementia. She was reluctant to accept any extra help after my grandfather died, but has got used to the help and will likely need more in the future.
The key is to drip-feed the help in a way, not everything at once, but little by little. It feels less like a complete giving up of independence that way, which is very difficult for someone who has been able to function ably for the majority of their lives.
What sometimes helps is sitting down and explaining the impact it has on us to worry so much about them, when having someone do something like help like with him lunch or come in and wash/dry their hair would help to put our minds at ease.
posted by Kat_Dubs at 3:54 PM on November 18, 2015
The key is to drip-feed the help in a way, not everything at once, but little by little. It feels less like a complete giving up of independence that way, which is very difficult for someone who has been able to function ably for the majority of their lives.
What sometimes helps is sitting down and explaining the impact it has on us to worry so much about them, when having someone do something like help like with him lunch or come in and wash/dry their hair would help to put our minds at ease.
posted by Kat_Dubs at 3:54 PM on November 18, 2015
Please, please, please, please, start looking at memory care facilities right now. You don't have to do it with your dad, but you really need to find out what's available in the area, how it will be paid for, etc. etc.
You also need to get you dad's legal arrangements (POA, etc) so that you can take control when the time comes. It's not a question of "if". It's a question of "when". You don't want things to get to a point where you're suddenly in an emergency situation and have do it all in a matter of days, as happened to me with my own mother.
I'm so sorry you and your dad are having to deal with this.
posted by Thorzdad at 8:36 PM on November 18, 2015 [2 favorites]
You also need to get you dad's legal arrangements (POA, etc) so that you can take control when the time comes. It's not a question of "if". It's a question of "when". You don't want things to get to a point where you're suddenly in an emergency situation and have do it all in a matter of days, as happened to me with my own mother.
I'm so sorry you and your dad are having to deal with this.
posted by Thorzdad at 8:36 PM on November 18, 2015 [2 favorites]
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I hate to be so incredibly gloomy about it, and maybe that's just what I've seen (6 times in a row in the same family), but I have yet to see anyone who was initially resistant start turning around. The disease tends to amplify the person inside, for worse, mostly.
I'm so very sorry.
posted by xingcat at 6:37 AM on November 18, 2015 [8 favorites]