Yes, you will be required to make an enormous sacrifice if you decide to keep the person who is deeply forgetful at home.
Blackfin66 left this interesting comment and question under the article, When Alzheimer's Patients Say Mean Things, Make an Inventory
I'd especially like to hear how you dealt with the bad reaction to leaving the house for a while. I understand that my wife does not like to be left alone, and I think I understand why. But there are occasions when I do it anyway. To be honest, I feel that I have already greatly limited my activities to stay with her and there are times when I need a little time to myself or a little time to socialize. I never go for more than 2 or 3 hours (usually less) but it is always guaranteed to make for ugly comments. The good thing is that she gets over it in an hour or so....maybe that is as good as it gets.
By Bob DeMarco
Alzheimer's Reading Room
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It took me a while to understand how my mother might be feeling when I went out and left her alone at home.
This does relate back to the article about "inventorying" 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?
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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 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 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.
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.
Lets reverse field. Instead of "venting" and complaining about the behavior of a person that is deeply forgetful, lets 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.
Blackfin, 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 wife 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.
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. Yep, 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. I could have chosen those alternatives. I decided not to.
If you don't choose I think it leads to burden. And in the case of the Alzheimer's caregiver Alzheimer's care - E paradigm the burden comes in pairs.
Bob DeMarcois the Founder of the Alzheimer's Reading Room (ARR). Bob is a recognized Influencer, speaker, and expert in the Alzheimer's and Dementia Community Worldwide. The Alzheimer's Reading Knowledge Base contains more than 5,000 articles, and the ARR has more than 390,000 links on the Internet. Bob lives in Delray Beach, FL.
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