One of the most difficult things that Alzheimer's caregivers face is the abandonment of family and friends.
This is a companion article to - Dementia Patients Can Deceive Others to the Distress of Their Caregiver.
I am not saying it happens to all of us, I am saying it happens to most of us - we often feel abandoned by family and friends.
Did it happen to you?
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By Bob DeMarco
Alzheimer's Reading Room
As friends and family fade away we feel lonely. At times some of us feel like like we are doing the caring all by ourselves.
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Here are three things we hear that can really makes us feel both sad and abandoned.
1. I Don't Know How You Do It!
I can't remember how many times someone said to me, I don't know how you do it. I can remember thinking you are darn right you don't know how.
And, then I would think. If you know it is so hard, why don't you give me more help?
It just seems odd that a person can acknowledge "its hard", and then do nothing until the next time they give you a call. They might say it is hard, but they do they really recognize or understand what you are going through? If they did, wouldn't they offer to help?
On the other hand, many of us are not good at asking for help.
The question remains simple, why don't they help us if they know it is hard to do?
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2. She Sounds Good
Many of you probably experienced this one.
A person calls on the telephone and talks to your loved one. When they are finished they tell you, "S/he sounds pretty good".
Meanwhile you just had a miserable day while caring for your loved one living with dementia.
You experience all kinds of difficult behaviors every day. Your loved one refuses to cooperate, they refuse to take a shower, they ask the same questions over and over, and yes, many times they are mean to you.
And, then you hear - they sound pretty good.
For me, this often made me angry. I wanted to shout - my mom has Alzheimer's disease, does that sound good to you?
Or, you have know idea how difficult she can be. Does that sound good to you?
It is amazing how a person living with dementia can be so very difficult to deal with all day long; and then, get on the phone at night and sound so perfectly normal and content.
Of course, this does change over time.
Eventually your loved one will start saying things on the telephone that just don't make any sense. And what happens next? The person who has been telling you she sounds good all of a sudden realizes someone they love (or knows) actually is living with dementia. They then get all bent out of shape, and sometimes they start crying.
Of course by that time you have being living with the slow steady progression of Alzheimer's for months, or more likely years.
Yes, this can be very disconcerting. It was for me. How about you? Did it happen?
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3. She Acts Normal
One thing that can really get under the skin of a caregiver is when a person living with dementia starts acting normal in public, or in front of others.
This happens all the time. Of course, your loved one has not been acting all "normal" and hunky dorey around you all the time.
In fact, sometimes they act downright nutty. They engage in behaviors that are so unsettling that you often feel at wits end.
One good example of this would happen every time I would take my mother to the doctor.
When I said to Dotty, we need to go to the doctor what would my mother do? She would refuse to go.
She would resist me every step of the way. She would say, I'm not going. When we arrived in the parking lot, she would say, I am not getting out of the car. While we were in the room waiting for the doctor my mother would ask over and over:
- Why are we here
- Or, can we go home now.
Then the doctor would walk into the room and smile. What would happen next? My mom would start acting all normal and happy. She would act like nothing out of the ordinary was going on.
The doctor would then ask, how are you Dorothy? Dotty would respond, I'm fine, I'm a healthy old broad. Of course I would already know she had a "raging" UTI, or fever.
Have you ever been driven crazy by the fact that the one you love can act so out it around you, and so perfectly normal in front of others?
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Bob DeMarco is the Founder of the Alzheimer's Reading Room (ARR). Bob is a recognized expert, writer, speaker, and influencer in the Alzheimer's and Dementia Community worldwide. The ARR Knowledge Base contains more than 5,000 articles and 436,000 links. Bob lives in Delray Beach, FL.
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