Complete confusion

In this photo Elda was extremely depressed and nervous because she sensed something was wrong with her son. 2022

I would like to say that losing one’s mind to diseases such as Alzheimer’s or Senile Dementia obviously bring about emotions that evoke strange behaviors, and any caregiver knows that from one minute to the next there can be a complete change in personality, and they are often not charming. This confusion that overwhelms them is devastating because they don't know who they are, who they are with, what they are doing or where they are, because suddenly their mind shuts down. These feelings are very real and must be extremely frightening to them, and quite frankly can be unnerving for those around them too because they take us off guard and can cause feelings of embarrassment or anger.

My mother’s transition into a state of “not knowing” was rather quick; I am speaking of a few months not a few years progression and I am not speaking of forgetting things, I am referring to being able to cook dinner (even if she forgot some ingredients), clean and care for herself and others to not being able to be left alone for long lengths of time. There was always the worry about her leaving on a teapot or putting something in the microwave that would start a fire, falling or wandering outside the house and forgetting where she was. Those are very real things and usually the first that need to be addressed: the safety of your loved one and how to protect them; while still giving them the freedom to do what they can.

Another main consideration in the beginning especially but still holds true today, is her time limit to do things (being out in public, or in company, or anything else we may do with her) and if this limit is exceeded confusion, depression or anger sets in. Elda ‘s time frame was generally around two hours before she got too tired and needed to either go home or be in a place where she felt secure and at peace, now it is much less. Unfortunately for us, understanding when she had enough was not easy especially because she didn’t want too or just couldn’t communicate this to us. There were many times (even now) when she was having a good time, however often times within minutes that changes and she becomes out of control, or when we arrive at home the sudden change of scenery sets her off. This inability of self-expression becomes the burden of the caregiver, it is up to us to have the capacity to discern their limits. We become the ones to judge when enough is enough, not at all an easy task! It is also a task that will cause judgements from others who simply cannot understand why you are doing what you are doing (ex. Why go home or leave a party, especially when those suffering from Alzheimer’s are having a great time).  Making these decisions is daunting and may cause a lot of pressure on those making them wonder if you are doing the right thing; but never be preoccupied with judgements from others, be concerned with protecting your loved one (and know you will make a million mistakes along the road, no one is a born caregiver, but some mistakes aren’t even mistakes, they are just precautions).

Confusion also comes with actual physical objects and needs to be considered for safety. There will be objects and things used daily that all of a sudden, they become foreign. My mother used to grab the toothpaste and use it as face cream or body lotion, and the only way we discovered this was because it was green and easily identifiable. A few times she was complaining that something was burning, and I didn’t understand why until she went to the bathroom, and I saw the stains from the toothpaste on her clothes. Even if they read the labels on the products they used all the time there is no connect, so a liquid soap becomes a shampoo or cream, a detergent to clean the sink becomes a hair spray. The faster you simplify their lives the better it is for them.

Elda also became over compulsive about her hair and how it looked. She would go into the bathroom all day long to fix her hair. It would have been fine if she was just brushing it, but she would tease it and spray it with hairspray, then tease it again, repeat. It never looked good enough and it got to the point where she actually damaged her hair from all the spray. There were times when she had put so much on that her hair was actually flattened against her head. and there was no helping her because logic no longer existed.

While we have a million stories yet to tell and encourage everyone to participate in our blog (perspective) and share your experiences, we want to emphasize that as a caregiver we have to understand there is no use in explaining or reprimanding. In the beginning you can label things and try your best to offer help and direction, but it is a waste of time and energy trying to explain. Take the situations as they come and just help them out of it with kindness and even laughter, so they won’t feel ashamed; they really believed they knew what they were doing. We cannot continue to debilitate an already crippled mind with explanations they can no longer understand.

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playlist: Nervousness and other emotions/Nervosismo e altre emozioni Alzheimers

This is a very short clip of my mother after she was given a drug to relax her. The video seems to be of her just chatting however, this lasted more than 6 hours non stop. She was scheduled to have an MRI, however it was not possible because the drug had the opposite affect and she would not be still. It is a testament to how medicines effect everyone differently. 2018

This video was taken January 2023. My mother has always had outbursts of strange behaviors but since my brother’s death she is being very insistant and having very aggressive moments.