AboutMary Gordon Expertise Several years direct experience as caregiver for family member who died of end stage AD. Did lots of research and dealt with a lot of health care professionals and caregivers over the 7 years from diagnosis to the end. Used various care options from community based resources to increasing levels of institutional. Mother of three, two born during our loved one's decline, so I know what it is to be the ham in the sandwich, taking care of the older generation and the younger at the same time and trying to balance everyone`s needs. Ask me, I`ve probably been there, done that. We made lost of mistakes and learned everything the hard way - but you don`t have to! If I can`t answer your question, I`ll steer you to a place or person who can.
Experience Currently a program manager for a large utility company. My Alzheimers experience comes from having the illness in our family. Out of necessity, we did a lot of research in order to understand the disease, plan for what might come next, and make the right decisions to help and support our loved one. Please note, I am a Canadian living in Toronto, and therefore am not the best person to ask about US regulations and insurance rules!
Expert: Mary Gordon Date: 7/17/2008 Subject: Behavior Issues
Question My dad was diagnosed with alzheimer's around the age of 52. He is now 66. About a month ago he had a very traumatic "night terror" episode in which he was kicking and fighting and sweating heavily. Unable to wake him, he was taken to the hospital. Tests did not show any other medical reason for his episode. Since this occurrence, my dad has had trouble walking. His memory has taken him back to childhood memories and being in his mid 20s (not in any particular order). This was over the course of days where every couple of days he was in a different time and place. While in the hospital, the staff had him restrained several times because of his agressive behavior. He wasn't getting the best of care so my mom decided to take him home until they could find a suitable place for him. She also needed to realize she could not take care of him herself any more. His aggression and not sleeping were too much. He also was severely dehydrated and unable to urinate and so she brought him back to the hospital. He has since been transferred to a geriatic psych unit of a hospital where they are supposed to evaluate him to see what of his behavior is alzheimer's and what is not and to adjust his medications accordingly. However, his behavior was disruptive in the first couple of days and he was not sleeping. Now, in the past couple of days he is slurring his words, his eyes are rolling back and he is drooling. He is also sleeping a lot but to the point where my mother was unable to wake him. We beleive they are sedating him with medication so that he is not disruptive. The hospital is saying it is part of the disease. Is it possible that in the course of a couple of days he could begin exhibiting this type of behavior? Do nursing homes accept alzheimer's patients that are exhibiting agressive behavior caused by the alzheimer's?
Answer Hi Jen
Your family absolutely has the right to know exactly what medications they are giving your father. I'd get a list, including dose, and look them up for side effects etc.. This is not the disease you are seeing. This is very likely due to some sort of medication they are trying.
Quite often its a tough go to find the right medication at the right dose for the person, so they settle down and are more happy and serene, but aren't "zombified". Sometimes they have to try many drugs, and for each one, different doses, because everyone reacts differently. What works well on one person won't work at all for another. It can take some time to figure out. Quite often, they use antipyschotics rather than sedatives, but some of them can also cause drowsiness if the dose is too high.
I know a lot of people have strong feelings about using medication to calm someone down, but my view is, he has to be miserable and that has to be dealt with. He's really upset and agitated all the time, and with his poor injured brain, he can't really think through whether his behavior is dangerous or disruptive, or even if he's got any reason at all to be so angry. This behavior is common, and its a frequent reason for people ending up in facility care. Families can't cope with an adult sized "toddler" who may be up all night, may have tantrums, hit people, scream etc.
From what you describe, I wonder if your dad had a mini-stroke - sometimes called an infarct (a 25 cent word for a blockage in a blood vessel). They can be so small that the person doesn't t show routine stroke symptoms. It is possible to have both Alzheimer's and what is called multi-infarct dementia at the same time. There is really nothing that can be done about it - but infarcts or blockages will produce sudden changes in cognition and abilities. You don't mention what tests they did - sometimes they show on a brain scan. Something definitely happened out of the ordinary in terms of his brain. This isn't just normal progression. Post stroke (even a very tiny one) will also often make a person very tired.
Does the hospital have a neurologist or psychiatrist with a specialty in dementias? I would ask to have a talk with him. As I mentioned, this is NOT normal progression of AD. It may be evidence of other medical issue affecting his brain (such as a small stroke), or some of what you are seeing may be related to medications. They owe you better than to give you the run around. Your poor mother deserves some straight answers about his condition and the prognosis.
You asked if a person who is agitated can be accepted into care. Given that your father is relatively unusual, having early onset AD, he is much more robust and strong because he is young. If they can't find a medication that calms him down to make him feel and behave better, many facilities won't take him - he's a danger to staff, and worse, to the very frail demented elderly who are often residents. Hopefully, the hospital will find the right combination and doses of meds to make your dad feel more comfortable and at ease, so you have more options for his care going forward.
I really feel for your mother. She's really had a unfair hand dealt her with this. Hang in there, and ask for a meeting with the doctor in charge of his case to discuss what is really going on there. You need some answers.
