In the article, Alzheimer's Caregiver Heartbroken (Kate) , I mentioned how Dotty would withdraw, go into her bedroom for 20 hours or more and refuse to come out.
This was gut wrenching and heartbreaking.
Over the years, I have received many emails where an Alzheimer's caregiver tells me that the person living with Alzheimer's gets agitated, mean or starts to withdraw. As I draw out the facts via an email interaction, I often learn that the person living with dementia is often left alone for long periods of time.
In the beginning, I would often run to the store for 20 or 30 minutes and leave Dotty home alone. When I returned Dotty would be in a bad mood. She would say things like, "oh there you are, I thought you were never coming back". She would tell my sister on the phone at night, "I don't know where he goes, he just disappears and is gone all day, he must be up to something".
When I engage with caregivers via email, I often learn that the caregiver is gone all day working. Then they return to what can best be described as misery. Of course, leaving to work is a necessity. Someone has to work to pay the bills.
Meanwhile, as the day goes on, and as the person living with dementia becomes more and more frustrated, scared, and/or confused they become agitated. This agitation is unleashed on the caregiver when they arrive home.
Typically, the caregiver that is interacting with me wants to know what they can do to alleviate the problem. What they are actually asking me is, "what can I do so that I can work, and when I come home I can come home to some piece and quite". They are asking me, "how can I reason with the person suffering from Alzheimer's".
Unfortuantely, you can't reason with a person living with dementia at this point of development of the disease. They can't be left at home and alone. As far as I can tell, and for the most part, they are scared. This of course is bounded by insecurity, confusion, and frustration. When a person, any person, goes through this cycle -- confusion, frustration and insecurity, the eventual communication is some expression of anger. In other words, if you bottle up your feelings and don't resolve issues eventually you will act out in anger.
One point here. Persons living with dementia can't remember, and often they have no concept of time. For example, sometimes I go to throw out the trash and Dotty will "accuse" me of having been gone for hours. I now have this covered -- its called Harvey the Repeat Parrot . If Dotty is talking to Harvey while I am throwing out the trash, she is not alone.
When a person living with dementia is left alone it is very easy for them to get confused. This might start by them wondering where you are, and then wondering if you have abandoned them. When you come home all this pent up "angst" comes flying out of them. Sadly, they cannot explain to you in "real world" terms why they are feeling the way they are. They cannot explain their feelings. They cannot "reduce" their feeling of angst, worry, and confusion the way you and I do --by engaging in some high quality communication that leads to the reduction of the negative feeling. Conflict reduction.
So they lash out.
It is clear to me after interacting with hundreds of Alzheimer's caregivers that challenging behaviors: agitation, meanness, and sometimes physical abuse are often the result of the caring model and the inability of the caregiver to learn that some dementia patients can't be left alone, and that, like it or not, they need a lot of attention.
The single best example that I know of that explains this is what Judy Berry has been able to accomplish at the Lakeview Ranch . Read this closely.
The dementia patients that come to the Lakeview Ranch are the patients that nobody wants. They are often mean and sometimes violent. They engage in behaviors that are described in the dementia lexicon as "challenging".
In these cases, the family can't deal with them, so they seek out an appropriate memory care facility. The facility cannot deal with the "challenging behavior"so they throw them out. Most of the dementia patients at the Lakeview Ranch have been thrown out of multiple memory care type facilities for this reason.
Over 93 percent of these dementia patients that arrive at the Lakeview Ranch become good citizens that are capable of living a quality life in a group environment. How and why?
First, at the Lakeview Ranch the staff to patient ratio is 3 to 1. 3 to 1. This means the staff gives great attention to each patients. Something they need. Second, the Lakeview Ranch is "rich" in activity. The dementia patients are doing things all day long. They interact with small animals, go on picnics, take walks, engage in music and art, eat nutrious food, and exercise. The list goes on and on. Go here to get some ideas you might be able to use.
The bottom line. There comes a point when persons living with dementia cannot be left alone. So something must be done. An appropriate alternative must be discovered.
It is also clear to me that many dementia patients that are engaging in challenging behaviors need greater attention, and need to be engaged in a greater number of activities during the day.
The alternatives include local day care or an in home caregiver during working hours.
More Insight and Advice for Caregivers
Original content Bob DeMarco, the Alzheimer's Reading Room