Help me help dad
April 16, 2019 9:27 AM Subscribe
My dad had a stroke 4 years ago and his mental and cognitive health have deteriorated significantly in the last year. He won't get help. Is there anything that I can do?
My dad had a major stroke during open heart surgery 4 years ago. He lost the use of the right side of his body and initially could not speak. In the first year after the stroke, he made tremendous progress and he can now walk with a quad cane, speak (though slurred), and even got his driver's license back. The biggest cognitive deficit that he had at the time was an inability to sense his own limitations, but for the most part he was just as sharp as he had been before the stroke.
In the years since then, his mental and cognitive health have deteriorated dramatically, especially in the last year. He had some cognitive testing about a year ago, but the results were only shared with him. His short-term memory is awful. He has significant anxiety that has led to panic attacks and skin picking, and makes him not want to leave the house anymore. He has a hard time processing what's going on around him, so watching a movie or keeping up a conversation is difficult. Overall, he just seems like he's not really there. My sister just had his first grandchild and yesterday he sat in her hospital room staring ahead or playing on his phone for an hour, then he got up and left without saying goodbye.
I know that this is how it is now, and he's not going to get better. But I also know that he could probably receive some kind of care for these issues, like therapy or medication, to help him feel better in the day-to-day. Unfortunately, there are two roadblocks: 1) he lives with his wife (my stepmom), who takes care of him day-to-day but isn't really interested in improving his medical/mental care; and 2) he is still responsible for his own medical decisions. He does not want to go to any doctors, and when he does go to an appointment, his doctors talk to him and don't share any information with us as his family.
I am so, so frustrated seeing him like this and knowing that things could be better for him, but he isn't willing or able to get the help that he needs, and my stepmom isn't willing to push, either. Is there anything that I can do?
My dad had a major stroke during open heart surgery 4 years ago. He lost the use of the right side of his body and initially could not speak. In the first year after the stroke, he made tremendous progress and he can now walk with a quad cane, speak (though slurred), and even got his driver's license back. The biggest cognitive deficit that he had at the time was an inability to sense his own limitations, but for the most part he was just as sharp as he had been before the stroke.
In the years since then, his mental and cognitive health have deteriorated dramatically, especially in the last year. He had some cognitive testing about a year ago, but the results were only shared with him. His short-term memory is awful. He has significant anxiety that has led to panic attacks and skin picking, and makes him not want to leave the house anymore. He has a hard time processing what's going on around him, so watching a movie or keeping up a conversation is difficult. Overall, he just seems like he's not really there. My sister just had his first grandchild and yesterday he sat in her hospital room staring ahead or playing on his phone for an hour, then he got up and left without saying goodbye.
I know that this is how it is now, and he's not going to get better. But I also know that he could probably receive some kind of care for these issues, like therapy or medication, to help him feel better in the day-to-day. Unfortunately, there are two roadblocks: 1) he lives with his wife (my stepmom), who takes care of him day-to-day but isn't really interested in improving his medical/mental care; and 2) he is still responsible for his own medical decisions. He does not want to go to any doctors, and when he does go to an appointment, his doctors talk to him and don't share any information with us as his family.
I am so, so frustrated seeing him like this and knowing that things could be better for him, but he isn't willing or able to get the help that he needs, and my stepmom isn't willing to push, either. Is there anything that I can do?
How is your relationship with his wife? As your father's primary point-of-care, she's most likely going to be the one who can make progress in enacting changes to his medical help, and if you can come to an agreement with her about how to proceed from here, it'll most likely be an easier road for everyone.
posted by xingcat at 9:57 AM on April 16, 2019 [6 favorites]
posted by xingcat at 9:57 AM on April 16, 2019 [6 favorites]
Is it to the point that you feel he's not safe, or is it just you think his life is substandard? If the former, your state probably has some form of adult protective services. Of course, if you call them, you will be trashing the relationship with his wife forever, so you have to weigh the pros and cons.
posted by praemunire at 10:19 AM on April 16, 2019 [1 favorite]
posted by praemunire at 10:19 AM on April 16, 2019 [1 favorite]
He has the life he needs. Take it from me, life in a care center will not be better. If his wife needs help with bathing him, she can buy some. If he becomes a medicaid inpatient, the state will attach everything if they can. Just be with him as you can, love him, see him on a regular schedule. Give his wife some breaks from full time care. Don't try to mess with their system, respect it and let them tell you how you can help.
posted by Oyéah at 11:13 AM on April 16, 2019 [11 favorites]
posted by Oyéah at 11:13 AM on April 16, 2019 [11 favorites]
Best answer: Hi anotheraccount. Several of my loved ones (including a former partner) have experienced cognitive decline, mostly from dementia.
The symptoms you describe could indicate that your father may be experiencing vascular dementia, which is very common in people who have had a stroke or who are at risk of stroke. If he does have dementia, it is very important that he assign power of attorney to someone...if a lawyer and judge would consider him to be cognitively competent enough to do so. If he's past that point, many states enable the assignment of guardianship. Also, most states allow families to set up trusts (sometimes called senior trusts) that protect a person's assets. For example, if your father eventually needed nursing home care, the trust would prevent Medicaid from putting a lien on his house or from taking any of his other assets. The trust has to have a trustee, which is usually the spouse or an adult child. Another option is to have the lawyer who is setting up the paperwork to be the trustee, but that is expensive (it's a monthly or annual fee as long as the lawyer is assigned as trustee). I'm sharing all of this info so you don't end up in some of the difficult positions that my family ended up in.
Dementia is progressive and can render someone so debilitated as to be unable to even feed or bathe themselves towards the end of the process, and it's a very costly experience, in terms of time and money, for loved ones (in addition to the obvious emotional and mental strain for everyone involved). Take it from me, it's worth the effort to get him diagnosed and treated by a neurologist. He needs to get a brain MRI to determine whether he's having vascular bleeding in his brain, and to see whether he has significant brain atrophy (a possible symptom of dementia). If a neurologist determines that he has Alzheimer's (another type of dementia), there are some drugs that can slow that type of dementia. If it's vascular dementia, I don't think there are any drugs that can slow that down.
Most neurologists (as well as primary care doctors) in the U.S. will not tell a patient that they have dementia. I've researched this, and it turns out that most American professional associations for neurologists have agreed that someone with cognitive decline would experience too much mental distress if they were informed about their dementia diagnosis, therefore the standard practice is not to tell them (I've seen this in practice several times with loved ones). The Alzheimer's Association (a U.S. organization) opposes that practice and has published their stance - that they think dementia patients, especially in the early stages of the disease, deserve to know their diagnosis so they and their family can make plans for their eventual decline. Many American neurologists will not even tell family members of the diagnosis unless they show proof of power of attorney or guardianship. So know in advance that you have to be very direct with the neurologist and ask them whether they will require power of attorney or guardianship documents to share diagnoses with family members.
Ultimately, if he has dementia, a lot of planning has to happen asap, to avoid legal challenges down the road. I am talking from experience. Feel free to message me if you have any questions.
posted by healing xochi at 11:57 AM on April 16, 2019 [22 favorites]
The symptoms you describe could indicate that your father may be experiencing vascular dementia, which is very common in people who have had a stroke or who are at risk of stroke. If he does have dementia, it is very important that he assign power of attorney to someone...if a lawyer and judge would consider him to be cognitively competent enough to do so. If he's past that point, many states enable the assignment of guardianship. Also, most states allow families to set up trusts (sometimes called senior trusts) that protect a person's assets. For example, if your father eventually needed nursing home care, the trust would prevent Medicaid from putting a lien on his house or from taking any of his other assets. The trust has to have a trustee, which is usually the spouse or an adult child. Another option is to have the lawyer who is setting up the paperwork to be the trustee, but that is expensive (it's a monthly or annual fee as long as the lawyer is assigned as trustee). I'm sharing all of this info so you don't end up in some of the difficult positions that my family ended up in.
Dementia is progressive and can render someone so debilitated as to be unable to even feed or bathe themselves towards the end of the process, and it's a very costly experience, in terms of time and money, for loved ones (in addition to the obvious emotional and mental strain for everyone involved). Take it from me, it's worth the effort to get him diagnosed and treated by a neurologist. He needs to get a brain MRI to determine whether he's having vascular bleeding in his brain, and to see whether he has significant brain atrophy (a possible symptom of dementia). If a neurologist determines that he has Alzheimer's (another type of dementia), there are some drugs that can slow that type of dementia. If it's vascular dementia, I don't think there are any drugs that can slow that down.
Most neurologists (as well as primary care doctors) in the U.S. will not tell a patient that they have dementia. I've researched this, and it turns out that most American professional associations for neurologists have agreed that someone with cognitive decline would experience too much mental distress if they were informed about their dementia diagnosis, therefore the standard practice is not to tell them (I've seen this in practice several times with loved ones). The Alzheimer's Association (a U.S. organization) opposes that practice and has published their stance - that they think dementia patients, especially in the early stages of the disease, deserve to know their diagnosis so they and their family can make plans for their eventual decline. Many American neurologists will not even tell family members of the diagnosis unless they show proof of power of attorney or guardianship. So know in advance that you have to be very direct with the neurologist and ask them whether they will require power of attorney or guardianship documents to share diagnoses with family members.
Ultimately, if he has dementia, a lot of planning has to happen asap, to avoid legal challenges down the road. I am talking from experience. Feel free to message me if you have any questions.
posted by healing xochi at 11:57 AM on April 16, 2019 [22 favorites]
Best answer: I'm sorry your dad and the rest of your family is going through this. I'm a neurologist and I want to 2nd much of what healing xochi has said. If he had an initial improvement followed my progressive decline and new symptoms, I would be worried about an ongoing process, such as vascular dementia or Alzheimer dementia, or even frontotemporal dementia if he's impulsive or experienced personality/language changes as your description suggests.
My caveats are that (1) unfortunately there is no curative dementia drug yet. We have a few meds in our toolbox, but they are not great -- maybe 1 in 3 people stabilize -- and if he does have FTD, using an Alzheimer drug like donepezil can precipitate a crisis. And (2) paternalism around dementia is unfortunately common, but doesn't have to be that way, and hasn't been that way anywhere I've practiced or trained (US East Coast). I can share specific recommendations for cognitive neurologists/locations if you MeMail me.
The stuff about privacy and HIPAA and the potential need for a trust is absolutely spot-on. Legally, your step-mother is his default decision-maker at present, unless he signs a medical power of attorney (which is different from a financial POA) naming someone else. Most medical centers will allow a patient to designate "informed others" who are also allowed to receive medical information on their behalf, but that's very much an opt-in procedure. So until he formally gives you or your sister permission, either by signing a form or by having you present at the clinical visit (in-person or by phone/Skype, I've done it all!), healthcare providers are legally required not to share information with you. I know that's frustrating.
Good luck.
posted by basalganglia at 12:29 PM on April 16, 2019 [15 favorites]
My caveats are that (1) unfortunately there is no curative dementia drug yet. We have a few meds in our toolbox, but they are not great -- maybe 1 in 3 people stabilize -- and if he does have FTD, using an Alzheimer drug like donepezil can precipitate a crisis. And (2) paternalism around dementia is unfortunately common, but doesn't have to be that way, and hasn't been that way anywhere I've practiced or trained (US East Coast). I can share specific recommendations for cognitive neurologists/locations if you MeMail me.
The stuff about privacy and HIPAA and the potential need for a trust is absolutely spot-on. Legally, your step-mother is his default decision-maker at present, unless he signs a medical power of attorney (which is different from a financial POA) naming someone else. Most medical centers will allow a patient to designate "informed others" who are also allowed to receive medical information on their behalf, but that's very much an opt-in procedure. So until he formally gives you or your sister permission, either by signing a form or by having you present at the clinical visit (in-person or by phone/Skype, I've done it all!), healthcare providers are legally required not to share information with you. I know that's frustrating.
Good luck.
posted by basalganglia at 12:29 PM on April 16, 2019 [15 favorites]
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What my sisters and I have done is basically trick him into doing brain exercises. I've gotten him into the practice of writing in a journal every day. He literally just writes a few sentences like "It rained today. I chopped wood. Ate pizza for dinner." But that helps him focus his thoughts and provides a reference when he can't remember what happened the day before. I got him an iPad and I make him do brain training like lumosity and peak. I buy him jigsaw puzzles. I talk to him about complicated things and explain every last step.
My sister is on him with his diet, making him eat all kinds of 'brain food". We make him do yoga and meditation whenever possible. My poor dad - we're basically his drill sergeants. But we're determined to slow the deterioration and maybe even get some of him back. Anything is possible. There's got to be some unused brain cells in there that i can unlock!
I'm hesitant to suggest any medication since I am not a doctor or physician or anything like that. We've got him on cbd oil for anxiety. I make him drink kombucha tea, which I also think is calming.
posted by silverstatue at 9:51 AM on April 16, 2019 [4 favorites]