Trying to brace myself for the next blow
August 3, 2011 4:05 PM Subscribe
What can I expect, now that my father's been diagnosed with Multi-Infarct Dementia?
My father's been in a nursing home for about 15 months; he wound up there after untreated Bullous Pemphigoid resulted in a heart infection and a generally weakened state (he's 83). He's been increasingly forgetful and disoriented since then and has now been diagnosed with Multi-Infarct Dementia. And his mental state seems to be deteriorating at a faster rate than before; the symptoms we used to see on his worst days are now almost always there. When I went with him yesterday to the dentist, he wanted to know where my mother lives (in their house, like always) and told me some wacky story that my brother had called him and told him to arrest somebody. His ability to form new memories is very poor, he's convinced that people in the nursing home are spying on him, he's lost much of his social skills, and he couldn't make any sense of the multiple notes he'd written to remind himself of the dentist appointment.
My question is what we should expect from here. I know there aren't "stages" to this condition the way there are in the case of Alzheimer's Disease, but I'm wondering if there's any way to predict the course of the illness. Could he go on for years this way? What should we be prepared for? Frankly, I don't know if these are answerable questions--everything I've read seems to indicate that it's pretty unpredictable--but I'd like to hear other people's experiences, if nothing else. The last year has been so stressful and difficult for my family, and I'm just trying to understand what's happening to us and maybe feel a little more prepared for what could come next.
Thank you all for your help.
My father's been in a nursing home for about 15 months; he wound up there after untreated Bullous Pemphigoid resulted in a heart infection and a generally weakened state (he's 83). He's been increasingly forgetful and disoriented since then and has now been diagnosed with Multi-Infarct Dementia. And his mental state seems to be deteriorating at a faster rate than before; the symptoms we used to see on his worst days are now almost always there. When I went with him yesterday to the dentist, he wanted to know where my mother lives (in their house, like always) and told me some wacky story that my brother had called him and told him to arrest somebody. His ability to form new memories is very poor, he's convinced that people in the nursing home are spying on him, he's lost much of his social skills, and he couldn't make any sense of the multiple notes he'd written to remind himself of the dentist appointment.
My question is what we should expect from here. I know there aren't "stages" to this condition the way there are in the case of Alzheimer's Disease, but I'm wondering if there's any way to predict the course of the illness. Could he go on for years this way? What should we be prepared for? Frankly, I don't know if these are answerable questions--everything I've read seems to indicate that it's pretty unpredictable--but I'd like to hear other people's experiences, if nothing else. The last year has been so stressful and difficult for my family, and I'm just trying to understand what's happening to us and maybe feel a little more prepared for what could come next.
Thank you all for your help.
Response by poster: Thanks for your answer, MMD. Yes, he's on Ativan now (ironically, he's always had problems with anxiety, but it just went untreated up until now); he still believes everybody's spying on him, but it doesn't seem to distress him that much. He only really gets agitated when he gets an infection or something and they send him to the hospital; then I give the nurses my cell phone number and tell them to call me if he starts yelling so I can run down there and calm him.
posted by WorkingMyWayHome at 4:55 PM on August 3, 2011
posted by WorkingMyWayHome at 4:55 PM on August 3, 2011
The visting nurse yesterday was very helpful in explaining the condition, and it will get worse, she said. She also did a mini psych exam, so you can ask the nursing staff to do that for you (i.e., what year is it, etc.). There are also physical consequences. One resource is caregiving.com, there are others, of course, but I would definitely ask an experienced nurse/social worker, etc. to sit down with you and explain it, and keep asking until you get answers.
posted by Marie Mon Dieu at 5:54 PM on August 3, 2011
posted by Marie Mon Dieu at 5:54 PM on August 3, 2011
Best answer: It can be really difficult to predict the exact course with MID. What you're talking about as far as a cause is a collection of smaller strokes that occurred when the blood/oxygen flow was disrupted to particular portions of the brain leading to damage of the brain tissue. The blood flow in the brain is from the heart to several large arteries, which then branch off to smaller and smaller blood vessels to provide blood flow over a wide surface area (this page has some nice illustrations to visualize this). With MID it's these smaller vessels that get blocked, so you have smaller, more discrete areas of damage. Initially this might happen without anyone even being aware of it, because the damage is small, but over time as more little areas are damaged, it eventually leads to more severe disruption of the brain's function. It's at that point that MID would be diagnosed.
Several factors would affect prognosis:
How much and what specific regions of the brain have been affected? The more cumulative damage, the greater the impairment, simply because there is less healthy tissue to perform the brain's functions. Also the specific regions that have been damaged will lead to specific impairments (e.g., are there motor areas that are damaged vs. language, vs. planning/organizing).
What led to the infarctions in the first place? If it is something that was time limited (like an infection that affected the heart's ability to pump blood), there may be a longer period of stability because the underlying cause has been addressed. If there was a longer history of heart disease/atherosclerosis/high blood pressure or if there is something that might cause him to have difficulties with blood clots, there may be a faster decline.
Also, any other health issues can cause symptoms to look worse for at least a period of time, so if he becomes dehydrated, gets an infection, etc. you might see a fast decline that might resolve a bit once the health problem is addressed.
It's important to talk with your father's neurologist to get a better understanding of these issues. S/he will also be able to give you more specific information about what to expect. I would also recommend, if you haven't already, getting a good gerontologist (a physician who specializes in health problems in the elderly) who can help coordinate care of all of these issues. Also, it sounds like you are going to be a primary caregiver for your dad which is an amazing thing to do, but will also be stressful. Be sure you have resources to rely on whether it be other family members, a therapist, a support group or whatever works best for you. You need to take good care of yourself in order to take good care of your dad.
posted by goggie at 5:57 PM on August 3, 2011
Several factors would affect prognosis:
How much and what specific regions of the brain have been affected? The more cumulative damage, the greater the impairment, simply because there is less healthy tissue to perform the brain's functions. Also the specific regions that have been damaged will lead to specific impairments (e.g., are there motor areas that are damaged vs. language, vs. planning/organizing).
What led to the infarctions in the first place? If it is something that was time limited (like an infection that affected the heart's ability to pump blood), there may be a longer period of stability because the underlying cause has been addressed. If there was a longer history of heart disease/atherosclerosis/high blood pressure or if there is something that might cause him to have difficulties with blood clots, there may be a faster decline.
Also, any other health issues can cause symptoms to look worse for at least a period of time, so if he becomes dehydrated, gets an infection, etc. you might see a fast decline that might resolve a bit once the health problem is addressed.
It's important to talk with your father's neurologist to get a better understanding of these issues. S/he will also be able to give you more specific information about what to expect. I would also recommend, if you haven't already, getting a good gerontologist (a physician who specializes in health problems in the elderly) who can help coordinate care of all of these issues. Also, it sounds like you are going to be a primary caregiver for your dad which is an amazing thing to do, but will also be stressful. Be sure you have resources to rely on whether it be other family members, a therapist, a support group or whatever works best for you. You need to take good care of yourself in order to take good care of your dad.
posted by goggie at 5:57 PM on August 3, 2011
Response by poster: Luckily, he's in a nursing home, so he's already getting specialized care. I don't even want to think about what it would be like if he weren't--we'd be doing things like hiding his car keys, and that sort of thing. His physical condition is poor, and that's what got him in the nursing home; the dementia was diagnosed later.
Goggie, he had high blood pressure and high triglycerides and was overweight basically his entire life; we were told when he had his knee replaced several years ago that there were signs of stroke in his brain then (he had a scan because of delirium from the pain meds), so this has been a gradual process over some time, but seems to be accelerating now. His doctor at the nursing home told me that his heart valves are leaky and probably generating blood clots that travel to his brain.
posted by WorkingMyWayHome at 6:29 PM on August 3, 2011
Goggie, he had high blood pressure and high triglycerides and was overweight basically his entire life; we were told when he had his knee replaced several years ago that there were signs of stroke in his brain then (he had a scan because of delirium from the pain meds), so this has been a gradual process over some time, but seems to be accelerating now. His doctor at the nursing home told me that his heart valves are leaky and probably generating blood clots that travel to his brain.
posted by WorkingMyWayHome at 6:29 PM on August 3, 2011
My grandmother had vascular dementia. She lived for about five years after the diagnosis. In her case, there was definite progression. It began with memory problems, then paranoia (she became convinced the nursing staff were stealing from her), then she gradually lost her vocabulary. You could tell she had something she wanted to say, but it seemed like she couldn't find any of the words. Ultimately, it got to where all she could do was stammer.
After she could no longer communicate, it was difficult to tell how clearly she was thinking. She was periodically resistant or combative with staff. Towards the end, it seemed like she didn't recognize anyone, but that she knew certain people were loved ones. I don't recall the official cause of death, but there was a day or two of general physical decline beforehand.
posted by dephlogisticated at 7:21 PM on August 3, 2011
After she could no longer communicate, it was difficult to tell how clearly she was thinking. She was periodically resistant or combative with staff. Towards the end, it seemed like she didn't recognize anyone, but that she knew certain people were loved ones. I don't recall the official cause of death, but there was a day or two of general physical decline beforehand.
posted by dephlogisticated at 7:21 PM on August 3, 2011
Hi OP. I'm really sorry. Having a relative with MID is very difficult. I was about 12 when my grandfather passed away due to heart failure and other medical complications; he had MID (as a result of several strokes) and had been in a nursing home for about two years.
It is not pretty news; and I hate to be a downer and cynical, but here is what I saw. My mother was his primary caretaker and I think the toll was quite great on her; as a family we visited him every Sunday or so. For the duration of most of those two years, the MID was so far advanced that he could not speak or really even communicate. He was confined to a wheelchair. There was not even a flicker of recognition when we came by. Prior to that, when he could still talk, he was very shaky and slow, sometimes recognizing my mother, but rarely anyone else.
I do not know if this is helpful, but this is the kind of situation you can expect as it gets worse. Courage to you and hang in there; caretaking is underrated and underthanked, but it is part of the human condition and the circle of life.
posted by ArgyleGargoyle at 7:41 PM on August 3, 2011
It is not pretty news; and I hate to be a downer and cynical, but here is what I saw. My mother was his primary caretaker and I think the toll was quite great on her; as a family we visited him every Sunday or so. For the duration of most of those two years, the MID was so far advanced that he could not speak or really even communicate. He was confined to a wheelchair. There was not even a flicker of recognition when we came by. Prior to that, when he could still talk, he was very shaky and slow, sometimes recognizing my mother, but rarely anyone else.
I do not know if this is helpful, but this is the kind of situation you can expect as it gets worse. Courage to you and hang in there; caretaking is underrated and underthanked, but it is part of the human condition and the circle of life.
posted by ArgyleGargoyle at 7:41 PM on August 3, 2011
My mother has some dementia issues, but not MID. I just dropped in to share some of my experiences. I agree with the sundowner issue, you will begin to see a pattern. My suggestion is that you watch for those patterns. When they change, it's time to let the doctors know.
In general, when my mom remembers things that never happened, I do not contradict her. One exception is that she tends to develop paranoia against one person in particular, it blows up into a nasty unnecessary confrontation, then she moves on to someone else. I do what I can to keep those from escalating, especially with a close family member, to the point where I will tell my mom I think she is developing resentment against someone about things that are not true. Sometimes she listens; sometimes she doesn't.
Another issue is that my mom developed hallucinations that TERRIFIED her. She saw spiders that talked to her and wrapped her in cocoons so she could not escape. For a long time we just thought she had a spider infestation at her house. It wasn't until she told me they talked to her that we took her to the doctor. She is now taking Geodon and the hallucinations have abated. However, if she misses even one day of the pills, the spiders re-appear.
Try not to freak out about the strange behaviors. It's just an old tired brain mis-firing. It's not the real person. Hang in there.
posted by eleslie at 8:35 PM on August 3, 2011
In general, when my mom remembers things that never happened, I do not contradict her. One exception is that she tends to develop paranoia against one person in particular, it blows up into a nasty unnecessary confrontation, then she moves on to someone else. I do what I can to keep those from escalating, especially with a close family member, to the point where I will tell my mom I think she is developing resentment against someone about things that are not true. Sometimes she listens; sometimes she doesn't.
Another issue is that my mom developed hallucinations that TERRIFIED her. She saw spiders that talked to her and wrapped her in cocoons so she could not escape. For a long time we just thought she had a spider infestation at her house. It wasn't until she told me they talked to her that we took her to the doctor. She is now taking Geodon and the hallucinations have abated. However, if she misses even one day of the pills, the spiders re-appear.
Try not to freak out about the strange behaviors. It's just an old tired brain mis-firing. It's not the real person. Hang in there.
posted by eleslie at 8:35 PM on August 3, 2011
Yes, he's on Ativan now (ironically, he's always had problems with anxiety, but it just went untreated up until now); he still believes everybody's spying on him, but it doesn't seem to distress him that much.
This could, also ironically, be causing some of the disturbances. When someone has gone an entire life self-managing their anxiety, to have its volume turned down can be unsettling. Hard to say. It might be working too well, or not well enough.
posted by gjc at 6:03 AM on August 4, 2011
This could, also ironically, be causing some of the disturbances. When someone has gone an entire life self-managing their anxiety, to have its volume turned down can be unsettling. Hard to say. It might be working too well, or not well enough.
posted by gjc at 6:03 AM on August 4, 2011
Response by poster: I'm seeing some similar paranoia in my father, eleslie. Right now, he's building an elaborate conspiracy theory involving a former roommate at the nursing home (funny how he can remember that stuff from day to day, but little else.)
posted by WorkingMyWayHome at 8:55 AM on August 4, 2011
posted by WorkingMyWayHome at 8:55 AM on August 4, 2011
What we have done (per the doctor, and many trial and errors also per the doctor) is give my FIL a specific dose of Ativan every 4 hours to keep it in his system, to prevent anxiety. He is also on a generic Zoloft and Risperadone, very mild doses, at night. The other thing is that he is on morphine for breathing problems, but that is as needed (as he is on hospice), so that can also relax him. We did do trazadone, as I said, at night to help him sleep (per the doc) but he was so groggy the next day and it really didn't help him sleep.
There are other meds specifically for dementia. You can ask about those. And also ask what is he getting now. We have given my FIL haldol once or twice at night for severe agitation, but that is only under strict supervision (instructions from a hospice nurse) and we found it also makes him wiped the next day. It's a fine line between meds to make people comfortable with physical problems and control their dementia issues, but my FIL asks for his anxiety pill and the best thing is to hit it before the anxiety strikes, from my experience.
Get educated on the drugs and the side effects, because anything too strong will either dope him up and/or make him a falling risk. But from my understanding, there are drugs for dementia so you should be asking about those. I am not even sure of this "hospice" program right now, because my FIL seems pretty strong at times and we put him in the nursing home for the mandatory 5 days respite care and he all of a sudden woke up and got mightily pissed off after days of falling asleep in his chair here, so there ya go.
posted by Marie Mon Dieu at 5:47 PM on August 4, 2011
There are other meds specifically for dementia. You can ask about those. And also ask what is he getting now. We have given my FIL haldol once or twice at night for severe agitation, but that is only under strict supervision (instructions from a hospice nurse) and we found it also makes him wiped the next day. It's a fine line between meds to make people comfortable with physical problems and control their dementia issues, but my FIL asks for his anxiety pill and the best thing is to hit it before the anxiety strikes, from my experience.
Get educated on the drugs and the side effects, because anything too strong will either dope him up and/or make him a falling risk. But from my understanding, there are drugs for dementia so you should be asking about those. I am not even sure of this "hospice" program right now, because my FIL seems pretty strong at times and we put him in the nursing home for the mandatory 5 days respite care and he all of a sudden woke up and got mightily pissed off after days of falling asleep in his chair here, so there ya go.
posted by Marie Mon Dieu at 5:47 PM on August 4, 2011
Response by poster: Thank you, everybody, for your input and support!
posted by WorkingMyWayHome at 11:14 AM on August 5, 2011
posted by WorkingMyWayHome at 11:14 AM on August 5, 2011
This thread is closed to new comments.
What I can tell you is that it can change from day to day, even from hour to hour. He is often better in the mornings, after he's had a good night's sleep. Then he gets tired (from his heart condition) and tends to ask questions. Such as if someone calls, he can't remember what they just said to him. Or he wants to know what day it is. Yesterday we had a visiting nurse in and he couldn't remember my name (even tho' I am here with him all the time).
They can do MRI's to show you the physical damage, but basically yes, I've seen the notes, and questions about things, paranoia (that the nurse or social worker is here to inspect us, or that I will be thrown in jail if he falls). Asking when his other son is coming to see him when he just saw him the day before.
If you haven't seen it already, you can expect "sundowning," that is, agitation in the late afternoon and early evening, along with night time disrupted sleep patterns. He may want to go somewhere and get up and try to wander, or become agitated. They have meds for this, but often my FIL will want to go for a walk and since he is also weak and using a walker, plus unsteady due to the meds, it's a task only my stronger husband can handle. If it's raining, we let him walk around the kitchen.
You need to talk to his doctor about the proper meds, one is Ativan for anxiety, and there are others specifically to calm them down (but as we found, anything ending in a "done," like trazadone, can also knock him out the next day and make him too wobbly).
From what I know, they do calm down eventually but then that's near the end. I'll be interested to see the other answers to this question -- my FIL is very aware of what is happening to his mind, and still quite sharp in some areas, but it comes and goes.
posted by Marie Mon Dieu at 4:41 PM on August 3, 2011 [1 favorite]