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You Can’t Leave a Person with Alzheimer’s alone. Yes, you will be required to make a sacrifice if you decide to keep the person who is deeply forgetful at home.

By Bob DeMarco, Alzheimer’s Reading Room

I am often asked why family caregivers cannot leave people with advanced dementia alone even for a “few hours” It took me a while to understand how my mother might be feeling when I went out and left her alone at home.

If possible, caregivers should keep in a notebook all the behaviors of a person who is deeply forgetful and looking for patterns that cause difficult, mean, or challenging behaviors.

The simple facts are that at a certain point in the development of dementia, as the dementia progresses, a person really cannot be left alone.

And the easiest way to understand this is that dementia patients do not "cope" well when left alone.

You could ask yourself this question. If the person who is left alone is angry when you return, how do you think they might have been feeling while you were gone?

Confused? Afraid? Abandoned?

Alzheimer's patients are very fragile. As the disease develops they don't have any real concept of time. To a person who is deeply forgetful 30 minutes might seem like an entire day.

For example, I might go to the store for 30 minutes and leave Dotty alone at home. To say the least, she would be angry when I returned.

Later that night she might say to my sister Joanne, “I don't know where he goes, he goes out all day long”. She said this even though I was only gone for 30 minutes to the store.

Clearly she had no understanding or any memory of how long I was gone, and why I was gone.

Dotty might also say, “I don't know what he is up to”. This was code for Dotty thinking or believing I was going to put her in a "home". Like any feelings or emotions in any of us, if you let these types of thoughts build up over time it is likely that you are going to "lose" the dementia patient.

When I say, "lose" what I really mean is lose their trust. If they don't trust, or stop trusting you, you are really in for some very miserable times. If an Alzheimer's patient does not trust you they will become angry, irritable, challenging, and hard to deal with.

When this happens you both suffer the burden. The person who is deeply forgetful becomes confused, then angry, and then they "act out". You on the other hand get left with an upset stomach and a very sore heart.

At least that is the way it felt to me.

Some caregivers complain that they can't get a minutes peace. That the person who is deeply forgetful follows them around or constantly calls out for them when they cannot see them. Dotty did this all the time.

Let’s reverse field. Instead of "venting" and complaining about the behavior of a person that is deeply forgetful, let’s instead ask ourselves, “Why do they follow us around, Why do they call out when they cannot see us?“

The simplest answer to this question is because we are their lifeline. We are the person they trust (maybe the only person). We are the person that keeps them attached to the real world.

Like it or not, you become the one person in the world that a person who is deeply forgetful can rely on and trust. You are the only person that can keep them from becoming confused, angry, and just downright scared.

It is rather simple, after a certain point in time a person who is deeply forgetful gets scared when left alone. This in turns leads to all kinds of negative behaviors.

Simply put, your situation is only going to get more difficult, not easier. Sooner or later, a person who is deeply forgetful cannot be left alone.

You do have some alternatives.

You could start to cultivate neighbors or friends and leave your family member with them from time to time. Or, you can have them come over and stay with her when you go out. Or, you can hire someone to be there while you are gone. Take care when hiring, you will only have peace of mind if the hired caregiver is specially trained and experienced in dementia care.

It would be much wiser to start introducing one or more of these alternatives now rather than later. Get the pattern set as soon as possible.

How did I cope with this? Simple, I rarely left Dotty alone for longer than a few minutes. I usually ran to the trash, or over to the pool when she was sleeping.

Believe it or not, I sometimes took the chance and went to the grocery store (Walmart) at 1 AM. Yes, they are open 24 hours a day.

This one will really catch your attention. I even took Dotty on dates, or away on weekends with my girlfriend. What can I say, there are a lot of wonderful, caring women in the world.

If you want to get on the path to Joy, and off the path to Burden, you will be required to gain the trust of the person who is deeply forgetful. You will be required to think about how they are feeling. For example, how they are feeling when you are gone.

You get to decide.

Yes, you will be required to make an enormous sacrifice if you decide to keep the person who is deeply forgetful at home, like I did.

You must choose. Burden or Joy.

Of course, this does not mean that you have to do what I did. There are good alternatives available. Often family members have other demands on their time and can only be occasional relief caregivers. That is fine as well. Choose an agency carefully and it will bring your loved one satisfaction, safety and happiness…and you, peace of mind.

alzheimersreadingroom.com

The Alzheimer's Reading Room is the number one source of life news for the entire Alzheimer's community. The organization’s goal is to Educate, sometimes Entertain, and Empower Alzheimer’s caregivers and their families worldwide.

We are very grateful that Bob has given us permission to publish their material. ■