Aug 22, 2018

I Cannot Get a Minute for Myself

It is not unusual in Alzheimer's care settings for dementia patients to seek constant attention. What can you do to alleviate this problem?

It is not unusual in Alzheimer's care settings for dementia patients to seek constant attention. What can you do to alleviate this problem?
By Bob DeMarco
Alzheimer's Reading Room

I received this via email from our Reader Brian.
Hi Bob! I have been reading you posts on the Alzheimer's Reading Room for some months now and find them very informative and uplifting.

I have been caring for my mother for just over 6 months now who was diagnosed with Alzheimer's about 2 years ago, even though I and other members of our extended family suspect she had it a lot longer.

To be honest with you, I find caring for her very tiring and weary some for many reasons.

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Brian continued ...
...first of all, I can not be outside of her presence for more than a few minutes or she will search me out so I have absolutely no quiet space to read or even get online for more than a few mins before being assailed with "what are you doing" "
why are you doing" etc etc.

...she is only satisfied if I sit with her virtually 16 hours a day, which is impossible.

She can/is very negative in her words to me and about others, and if I say something positive, she will return a negative answer...she had always been somewhat negative in outlook, but she is 100 times more so now.

....she is 83 yrs old, thinks she has nothing wrong with her, denies everything, even when shown proof.

...I understand I need to enter the Alzheimer's world, but her changes of mood, from mellow to angry, sad in the space of a few minutes for the whole day is for me, unbearable.

....nothing I say or do can allievate all this...I feel helpless and at the end of my tether, and ready to walk out every day.

....I do not want to see her put in a home, so any advice you may be able to offer would be greatly appreciated...thank you!
My response.

Whew. Deja Vu....

I sat there reading and thinking .... been there .... saw that .... experienced it.

I'm smiling right now because I believe there is hope Brian; but, I can assure you I wasn't smiling when it felt like I was in your shoes. Yes, I did get pushed to the limit many times.

Brian, I understand how you might be feeling. Like you, I had a similar experience in the beginning. It is disconcerting, frustrating, and you just can't help experiencing feelings of angst, anger, frustration, and hopelessness. The entire gamut of emotions washing over you with intense force.

Let's start here. My mother did not believe there was anything wrong with her. She couldn't walk very far but she still said -- "tomorrow I am going to the mall, and I don't know when I am coming back". She often said, "there is not a damn thing wrong with me". These are the mild versions of her words.

Brian, don't let this bother you. It is pretty common especially when Alzheimer's strikes at an older age. You have to try and get use to it and accept that she might never know that there is anything "wrong" with her. I doubt you will ever convince her otherwise. But let me ask you? Is it really important for you to convince her she is living Alzheimer's disease? What difference would it make? Make you feel better? Make her feel worse?

It is a waste of time and energy to try and convince someone living with dementia just about anything. Even if you did, they wouldn't remember in five minutes. Worrying about things like this distract you from your mission, and the stress you let off bleeds right out into the environment you are living. You get uptight and your mother ends up "more" uptight.

Okay, now to a biggie. This is where you might turn the tide on the entire situation and start heading in the right direction.

Like you, my mother had to "see" me at all times. The second I was out of her sight she would start -- Bobby, Bobby, Bobby -- even if I was a few feet away. But, out of her sight -- Bobby, Bobby, Bobby.

If I went outside to throw out some trash when I came back in she would say -- oh there you are, where have you been all day? It was not unusual for her to tell someone on the telephone that I left her alone all day, that I had been out, and then say -- I don't know what he is up to when he goes out. This did make me feel uptight and angry in the beginning.

She would say it with a sound in her voice that indicated that she believed I was up to -- "no good". It was clear that she was both angry and scared. She thought I was getting ready to put her in a "HOME". Or like, I was abandoning her. The fact that I was there all day long, every day, didn't count as far as she was concerned. Welcome to Alzheimer's World.

In Alzheimer's World a person living with dementia believes what they say to be true.

It soon became clear to me that she was "paranoid" about something. She was obviously "scared" the minute she couldn't see me, or maybe she was afraid of being alone. I did finally figure it all out. However, that was long after I came up with a solution that worked to alleviate the problem.

Here is a major point. I spent too much time trying to figure out and understand why my mother was behaving the way she was -- and too little time addressing the problem at hand and searching for a "real" world solution to an Alzheimer's World problem.

Brian you can't get a minute to yourself. Here are some concrete suggestions.

I couldn't get on the computer for long either. Soon enough, it was Bobby, Bobby, Bobby even though my mother was only ten feet away. The problem she couldn't see me. And obviously, she could no longer remember -- he is probably on the computer.

You need to try and reconfigure your furniture so that you can sit at the computer and so that your mother can see you "every second". This is what I did. My mother can watch television, I can work on the computer, and she can see me every second.

Occasionally, she still starts going Bobby where are you? Now, all I have to do is spin around in my chair, smile and say softly, I am right here. No lecture, no angst in my voice, no recrimination.

A major point here. Less words are better. I say, "I am right here" ... period. That is what she wants to know isn't it?

Saying something like, "I am right here can't you see me?" is not going to work well and might actually be counterproductive. You might actually end up making the Alzheimer's patient uptight by interjecting in those few extra words -- can't you see me? Would you like to get a lecture or a snide remark added in every time you asked a question? Would you like or feel comfortable around someone that treated you badly?

Here are 2 suggestions that might help. The first if the best.

Here is another tip? When a person living with dementia asks you a question for the 50th time in a day; all they are doing is asking you a question. In other words, asking you a simple question for the first time, not the 50th time.

Can't you (by you I mean all of us) learn to give a kind courteous answer each time? What makes you feel better? Saying I already told you five minutes ago its Tuesday. Or, its Tuesday mom.

There are two people in the equation -- the Alzheimer's caregiver and the Alzheimer's patient. Like it or not, it is up to the caregiver to change the dynamic. So folks, you are the one that needs to change. Change or pain. You get to decide -- simple enough.

Brian on this issue -- she won't let you out of her sight. You can try to introduce new variables into the equation to change things.

For example, get a cat (or a dog). This would give her something to take up her time and attention. Pets really work well. They also seem to make persons suffering from Alzheimer's calmer, happier, and more content.

Can you introduce some real exercise into the equation? Exercise is mood changing. You release endorphins, burn off calories, and the benefits to your heart, blood pressure, cholesterol -- and brain, are well known. You feel better, you are happier. Plus, she might start taking naps after the exercise.

If you try and get your mother into an exercise class she might refuse to go. She might yell, scream and complain. My mother did every day. Nevertheless, she went. I put her right into the chair in the gym at Silver Sneakers class as she complained and scowled. I did get a break eventually, I convinced a neighbor/friend to go with her. That really helped.

Does you mother like to do jigsaws puzzles, crossword puzzles, paint or doing anything from her life before Alzheimer's? You could put a photo album in front of her. Or turn on some music.

The solution is there, all you need to do is find it.

Brian, don't expect any of these solution to work perfect over night. You need to have patience. You need to keep doing whatever works until a pattern is established. Establishing a pattern, like a habit, takes some time.

If you get frustrated, keep this in mind. You are going to be a caregiver for a long long time. So you have plenty of time to accomplish change.

If you do it. If you are up to the task, you will end up feeling good about yourself. Once you start feeling good about yourself you will start giving off a "positive" vibe into your new -- Alzheimer's World -- environment. Positive creates more positive. At some point it begins to feed on itself.

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Bob DeMarco is the Founder and editor of the Alzheimer's Reading Room.

Original published in the Alzheimer's Reading Room

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