Saturday, June 7, 2014

Do Persons Living with Dementia Feel Abandoned?


When I left Dotty alone she quickly became scared, confused, anxious, and I soon learned she feared that I was going to abandon her.

Bob DeMarco
Alzheimer's Reading Room

Bob DeMarco
Does you Alzheimer's patient get angry, act mean, and start accusing you of things that just were not true? Any of these?

Do you leave your patient alone while you go to work? Are they angry or difficult to deal with when you come home?

Do you sometimes go out for 15 minutes or hours and leave your Alzheimer's patient alone?

When you return, or shortly after you return are they mean, or difficult to handle?

If so, then it is likely they are feeling some type of abandonment.

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I am using the term abandonment here quite broadly.

If an Alzheimer's patient gets scared, confused, dull, mean, or starts thinking things that just aren't true one of two things are likely: they are feeling abandoned or they have an infection.

How long does it take for an Alzheimer's patient to feel abandoned? Only minutes as the disease progresses.

Does you Alzheimer's patient call out your name when they can't see you? Do they follow you around from room to room? Do they need to be in contact with you all or most of the time they are awake? Do they call you as soon as they wake up in the morning?

It is very easy for an Alzheimer's caregiver to become exasperated when any of the above occur, happen.

When exasperated it is easy for the caregiver to make the situation worse by acting out. By meeting these behaviors with unintended mean spirited reactions.

We are all made of flesh and blood. So the fact that we react harshly sometimes is normal.

By the way, in case you forgot, the Alzheimer's patient is also made of flesh and blood. They differ because there brain is no longer functioning in the way we come to expect.

In the beginning, in the years when I was feeling heartache and agita (stomach aches) I would usually assume that these episodes with Dotty were the direct result of Alzheimer's disease.

When Dotty would say, "get out, I don't want you here, I can take care of myself." I would blame Alzheimer's. In fact, when Dotty would say mean things I would always blame Alzheimer's.

It took me years to learn that I should have been blaming ME.

I say that because much of the time I was causing these mean spirited behaviors. I say much of the time because sometimes it was a urinary tract infection causing the behaviors. Not really my fault, but something I did have to learn to detect.

Here is how I got a grip on these situations and learned how to "eradicate" them one by one.

I bought a few spiral notebooks and started taking notes. The notebook by the way is very different than my da Vinci pad.

What I did was, every time we had an episode, mean behavior, I wrote down what was happening the hour or two before the behavior, I wrote down a description of the behavior, I wrote down what Dotty said or did, and I wrote down my own reaction and what I said or did.

Soon I came to learn that most of the episodes occurred after I had left Dotty alone for a period of time.

In the beginning, I would leave Dotty alone and go out on Saturday night. This would lead to the worst episodes. I define the degree of the episode by the size, length and amount of time the episode lasted, and by how much my heart hurt.

On a scale of one to ten the aftermath of the Saturday nights out rated a 10 on a scale of 10..

Let's skip to a very common series of events that would make Dotty mean or basically unmanageable.

Let's say I decided to go to the dumpster and throw out the trash. I would tell Dotty, I'll be right back, I am going to throw out the trash. First mistake, I actually thought, or believed, that Dotty would remember I was throwing out the trash, and she would realize I'll be right back.

Sometimes when I went out to throw the trash I would start talking to one of our neighbors. To me it seemed like a nice brief conversation. However, because I needed someone to talk to these conversations would often last 20 minutes or more.

When I would return Dotty would say, "oh there you are, I didn't think you were ever coming back". Shortly thereafter she would get mean.

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she feared that I was going to abandon her. Or worse, put her in a home to rot.

Lets just say in broad terms Dotty felt like she was going to be abandoned.

This spiral notebook technique really works. I started taking notes on Dotty's pee pee problem. From the notebook I learned I had to get Dotty to take a pee every 90 minutes. I used the notebook to help me figure out how I could get Dotty to take a pee every 90 minutes. Learning the solution to the pee pee problem was a lot easier than implementing the solution to the pee pee problem.

Bottom line you have to learn what the problem is and what is causing the problem before you can start identifying a solution, and then implementing a solution.

It is my strong belief that there are solutions to every problem.

Advice. Get a notebook, start tracking everything. Read your notes. Get on the ball.

If you are a full time caregiver like I was this should not be a problem. Not a problem you think?

Well, I didn't have anything better to do other than caring for my mom so I decided to get very good at it.

I guess you could say I used all that time effectively.

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Bob DeMarco is the Founder and Editor of the Alzheimer's Reading Room (ARR). Bob is a recognized influencer, speaker, and expert in the Alzheimer's and Dementia Community Worldwide. The ARR Knowledge Base contains more than 4,000 articles. Bob lives in Delray Beach, FL.

Original content Bob DeMarco, the Alzheimer's Reading Room