Expert: Mary Gordon - 12/8/2009

Question
Mom was afflicted with the onset of sudden blindness on top of 3rd stage AD while I was on respite for 2 days. I returned to find someone who not only no longer recognized us or could play scarbble and cards but someone who appeared like an abused animal, lashing at anything that touvhed her or moved in close proximity. I have managed to get a very caring dr. to do glaucoma\cataract eye surgery today but hospital has been very unhelpful in finding a new drug for her which will help with the aggressive and defensive behavior which makes her close to impossible to take care of now. I do not even know how to find a decent nursing home to take her with her demonstrating these behaviors and the hospital is threatening to discharge her tomorrow. I was hoping that, God willing, if some eye sight is restored when we remove the eye patch, (assuming we can treat her well enough ot prevent infection or damage to new lense) the restoration of eyesight might restore some of her former cognitive abilities. Do you have any suggestions?  

Answer
Gigi, you don't mention the time frame or what they have tried.

She must be terrified and confused. If this just happened in the past few days, I'm not surprised she's very agitated. Hospitals are absolutely not set up to deal with dementia patients (I could tell you some appalling stories about my mother in law and a hip break). They have no clue, their staff have no training - it's just entirely beyond them, even if the person is just cognitively impaired and not agitated. She may even be having visual hallucinations, and won't be able to reason through what has happened to her.

Any kind of illness will often push a person at your mother's stage for a loop - or rather, it unmasks some of what they are able to hide or compensate for they are less ill physically. At this point, her AD is like an iceburg - she is much more impaired than is readily apparent to anyone in a social setting, so it's shocking to see. She is very likely to recover a great deal of ground as she gets better. My mother in law first broke a hip in early AD - and the stress of the illness, combined with the after effects of the general anesthesia had a shocking effect on her. She went from living alone with supports to being so completely confused and bewildered that the hospital called in a social worker. They thought we were in denial and lying about how she'd been before the fall. In the months following, as she recuperated, she did slowly come back. Never quite to where she had been, but most of the way back. I think the truth is they are just holding on with their fingernails, and any kind of stress layered on top of that will really have an impact on cognition and behavior. Don't be too pessimistic just yet - if this just happened, she'll need some time before you'll be able to tell what any permanent change might be.

Hospital staff don't have the skills to head of a catastrophic reaction - many people with dementia will go through these - in essence, they are a lot like a tantrum, in that the person tends to flip out when they are overstressed - tired, hungry, upset, feeling scared or sick. Quite often, the person will give out signs that things are too much - but hospital staff may not recognize the signs, or have the option of backing off and trying again later when she's calmer.  

Couple of things they could try - one of the benzodiazepines such as xanax - only as a very short term sedative to get her through the eye repair without getting kicked out - start with a low dose - perhaps .5 mg a day to see what happens. Expect her to be very sleepy and floppy if you try this medication. Again, it's worth a go, just to keep her calm for the next couple of days. You want her to rest and stay in bed anyway. I'd try to have someone with her at meal time - the hospital will not make sure she is provided with appropriate food (i.e. if she needs softer foods) and will not feed her or make sure she eats. You might want to see about some Boost or Ensure if you are having trouble getting calories into her.

Once the eye surgery is completed, see if they can get her released to a rehab hospital or even the psych ward, just until you get her meds sorted out, since few nursing homes will accept a very agitated individual. Are there any memory clinics near you? If you have a dementia specialist available to you, call him in. Sometimes they are neurologists, but occasionally a psychiatrist with a specialty in geriatric dementias. He or she may have some ideas about facilities such a specialized AD ward, even for a temporary stay, where they can work at getting her recovered and stabilized.  

Longer term - if you have a dementia specialist to assist, he or she may suggest giving something like risperdol a go - it's an atypical antipsychotic and it often works well on agitation and behavior problems. Again, start with a low dose and see what happens. Expect that you may have try several drugs, various doses, even various combinations - and expect it to take a while to hit on just the right combination. Also expect to revisit the medications every few months, to see what can be cut back or discontinued as things evolve. No two people are alike, and you will have to weigh any potential risks or side effects vs. the benefits you may see in terms of her mood and behavior.  

Citalopram is an antidepressant that also works on anxiety, and it can help as well - and there are others. Don't settle for zombification - that's okay if you just need to sedate her in the very short term - but in the longer term, the aim is to keep her as happy and active as possible, so she has the best possible quality of life.

If you need some immediate help in how to proceed or deal with the doctors, try the 24/7 helpline at the Alzheimer's Association (I assume you are in the US). They may be able to steer you to some specific resources where you live.
http://www.alz.org/we_can_help_24_7_helpline.asp

Hang in there. I know this must be very upsetting.

Mary G.