Hi Marlene! I'll be glad to help you with this issue.
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Hello, Dr. Mark, Thanks
This is such a sad and difficult situation. I can only imagine how hard this is for you.
Yes, it is
I have worked for quite a while now with people in this situation and they have shared that the hardest part of it is trying to get their parent to understand that they are trying to help, but
the parent often just takes out their frustration and confusion on you.
It also sounds like your mom was a demanding person to begin with, is that right?
Yes, very much. But she does not show herself confused or frustrated. She acts like in her old time, like if she is entittled .. If you know what I mean
I believe she does not realize how sick she is
I forgot to tell you a very important detail. Sometimes, while walking, I need to hold her or accompany her, even at home because she is losing her equilibrium...that is very scary for me and she asks for my help even to give little steps. I know she is perfectly capable of doing that. Only that she likes my attention and service to that extreme. I do not know how to handle that. Sometimes I feel like saying: "Walk alone on your own....I will be here, but I will not hold you" She also grabs me with too much strenght, her hands are not able to to relax, I guess.
I can not simply live after her, after all her movements...no one can, I guess
And then she takes a shower -able to do it herself- and refuses to leave the bathroom door unlocked..
I need to learn how to handle her. That is in sum, my problem
This is going to be a little difficult, but I need to broach this subject, okay?
It sounds as though she is coming close to the time that she needs to either have professional day care (or 24 hour care) or to be in a residential facility.
I know that in some ways this possibility is a relief,
but it is also emotionally tough...
There's one part of this we need to really address before the practical side:
and that is how to think about her.
I know that sounds a little theoretical but it's so important.
Most of the people I work with keep trying to maintain a "respectful" stance, and that's important, but
you have to recognize something about dementia:
you can't try to explain things to her and feel like you've now dealt with something.
It's like if you explain something to me, you expect that now we can move forward, that it's understood.
Well, for her it's not that way.
It's a little like a child but not quite the same.
So, for example,
if you know that you are starting to look at the available assisted living facilities in your area,
you don't tell her about it.
You don't "consult" with her.
You don't even inform her
until it's pretty much set.
This sounds to most adult children as if it's condescending, sneaky, or somehow not right.
But it's important. Because the nature of dementia
is that there's a lot of anxiety
and uncertainty and complex thought processes can increase that anxiety and frustration
So you have to often just inform her of what's about to happen matter of factly and accept that she's going to react negatively
she's a negative person to begin with (I hope that made you smile)
she's confused and trying hard to stay in control.
So, whether it's months before she moves or weeks,
she'll be negative and it's kinder and more effective to not increase a dementia patient's anxiety. Was that oka?
I'm sorry, okay?
Yes, it is. I perfectly understand it
I mean it, you are not only intelligent and understanding, but you're a kind person who's trying so hard for her mother
You must have a lot of gratitude inside.
Because I've been around people like your mom, and they're tough!
Yes, I have scruples and lots of feelings. But my mind is logical.
A great combination and one you're going to have to remember a lot as your mom's condition becomes more "visible".
Because what you're really seeing when you say that she doesn't "show" her dementia
is that she has a lot of internal resources, but they're all being used to maintain her "balance".
And that's going to become less and less available to her.
I'm afraid that's what the little steps business is about:
her becoming more aware subconsciously (strange, I know) that she's less capable and so testing out her greater dependency.
You're reacting with the attempt to get her to marshal her forces and not give in to "helplessness".
It's a natural fight, but it's always going to result in that emotional fatigue for you.
That's why I think it's time to start planning for her future: which is more practical:
in home professional care or a residential facility?
In home, I would try that first, or the other if I have no better choice.
That's a good stepped approach.
First looking into professional in home care, and evaluating it, agreed?
A good place to start is with her doctor, having a discussion with him/her about recommended companies.
A day care facility would follow, the later step would be a 24 hour or full time place for her. OK I will do that Dr. Mark. I will talk to her doctor about it.
But I would like to learn better coping skills or techniques myself first. In other words, I feel I do not know how to handle her. I was never bossy or dominant, and I feel that is a personality flaw I need to overcome. I just need to learn how to deal with her in a more efficient way.
I need to introduce a new term for you:
Here's what I mean.
You know when we are dealing with people who have Down Syndrome, for example,
or anyone with a "visible" disability,
we change "mode".
Have you noticed that?
We expect less, we take more time to see what their abilities are each time we meet them, etc.
We have a different attitude.
Well, your mom has a disability.
You can't treat her the way you're used to treating her your whole life: as a strong woman who is stronger than anyone else and can do anything (so to speak)
Your attitude now has to be that you've just come into the room and you're face to face with an adult with a disability.
And it's a whopper of a disability! (hope that made you smile too).
You are kind
When I talk with the nurses at the Psych Ward, for example,
they have to be in a frame of mind so that they don't get caught up in the patients' "weirdnesses"
I work with them in the same way: you have to accept their disabilities.
And work from within them.
That is by the way
why you can't try to tell her things in advance too much: she has a disability and can't process
the information without too much anxiety.
So, you have to accept that the roles have reversed:
You are the strong one now.
and emotionally some more.
She's the dependent one.
And she can't handle much.
And so she lashes out, much like a developmentally disabled person does.
Does that make sense?
It's not perfect, nothing will make it easy. But
I understand now that I can not expect her to agree with me, or understand
if you keep reminding yourself that you're now the emotionally strong one, that she has the disability, and that you are right: you can't expect her agreement,
then you will have an easier time of it.
That's the best we can offer you today: an easier time.
Because dementia is progressive, unfortunately, okay?
You're a fine human being; she's lucky to have you as her daughter.
Okay, I wish you the very best!
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