It took me a while to understand how my mother, who lived with dementia, might be feeling when I went out and left her at home alone.
The question: Can you leave a person with dementia alone. The answer is - No.
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By Bob DeMarco
Alzheimer's Reading Room
The simple facts are that at a certain point in the development of dementia, a person really cannot be left alone.
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?
Do they feel,
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. 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 I and I went 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 type 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 if they 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 forget becomes confused, then angry, and then they "act out". You on the other hand get left with an upset stomach (agita), and a very sore heart.
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.
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.
You do have some alternatives.
- You could start to cultivate neighbors or friends and leave your loved one with them from time to time.
- Or, you can have a friend come over and stay with them when you go out.
- Or, you can hire someone to be there while you are gone.
How did I cope with this? Simple, I rarely left Dotty alone for longer than a few minutes. I usually ran to take out the trash, or do something while she was sleeping.
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 of 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. For example, adult day services are excellent.
If you don't deal with this problem effectively you will feel all the negative feelings than can accompany caregiving.
In the case of the Alzheimer's caregiver, Alzheimer's care - E, paradigm the burden comes in pairs.
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