Frustration!

0609

This is my first post and I’m embarrassed.  My DH was diagnosed with MCI 2 1/2 years ago and AD in the spring.  Every day is frustrating but today I just can’t hold it together.  I am so angry!!!  He is not as severe as a lot of the people that are spoken of on this forum.  Today I don’t know where to turn so I am posting.  He gets confused easily and angers very easily and talks constantly if not to me to himself.  When he gets angry he goes from one thing to the next to the next.  It makes me crazy!  And it’s all about him!  Do I seem selfish, maybe I am but lately there have been so many different issues with him that I’m not doing well coping.  He doesn’t know where he is in relation to people or objects and often I get accidentally hit or bumped into and he gets angry if I say anything.  Anyway that’s it.  I know this isnt everything but it’s what I’m thinking about today.  Sorry

Dale

Crushed

Let me give it a try.

imagine a speaking  computer that  has a dictionary of vulgarities and insults and a random speech generator

it calls you a miserable stinking bitch
and ugly ungrateful cockroach  
a lying sack of horse manure 
 but you know its a computer and not real

So it does not bother you  

 That is a dementia brain
it will say crazier and crazier things until it finally shuts down.

 but its no more REAL than the computer I just described

Its just words strung together by a broken brain

You just have to learn to tune it out and accept that it is nonsense

Been there done that

  Welcome to the club

MaryG123

Hi Dale,

Please don’t ever be embarrassed about your feelings. They are perfectly valid and this is a safe place for you to vent.   My DH also has mci and some days I could just scream!  He stands in doorways and I’m constantly having to ask him to move.  And he bumps into everything.  Yes, there are others who have much worse issues to deal with, but they too understand what we are going through and have wonderful advice.  Some days I have sympathy for his poor confused mind, and other days I don’t, and feel sorry for myself instead.  Hang in there, you can do this!

Quilting brings calm

There is nothing to be embarrassed about.    It’s very stressful to go through the things you are  going through with your loved one .   Everyone here is either going to be where you are, at where you are or has been where you are.  For example, Crushed ( who responded first) has a join date of 2014.  

The stage your loved one is at is very difficult - especially if you are the kind of person that needs periods of quiet and don’t like people next to you all day.  Plus it’s like having a child that you need to be vigilant  about supervising almost every minute.  Nothing else can get done while they are awake. I totally get it 

0609

Thank you!   This makes me realize for certain that I’m not alone.  That others have experienced the very same things.  It’s validating!

Arrowhead

Children are born with a survival instinct. Everything is about them for the first few years of life as a way to ensure their survival. As dementia progresses, the brain digresses. It regresses to its younger self. The skills and intellect that it gained early in life; it tends to lose in reverse order as dementia takes its toll. Like a young child, they don't realize the consequences of their actions on others. One of the hardest lessons for caregivers and family to learn is to not take it personally.

toolbeltexpert

0609 Like the others have said nothing to be embarrassed about. My Dw had vision changes and I could walk up to her side and she wouldn't know I was there and she would be startled when I waved my hand in front of her. Your frustrations are valid. Confusion and anger for your dh are a part of it, and in part I understand, I think about all my Dw is experiencing and it makes perfect sense, but that doesn't make it any easier. Your experiencing behaviors that I am glad I haven't had to deal with, but I am sorry you are. Hang in there.

sandwichone123

I'll chime in on the "it's normal to feel this way" bandwagon. I know many of the forum members are retired, and to be honest I don't know how you can do it. I get away for a while. There are grownups for me to talk to.

It's like having a toddler, and well I remember the *need* to talk to a grownup at the end of the day, and how awful it would be if my spouse would come home tired and not want to talk. I needed him to talk, and we, as caregivers to a patient with dementia need someone to talk to. Someone who speaks full, comprehensible sentences that have content.

And doorways. I have a touch of claustrophobia, and I hate the standing in doorways piece. Once I came in the door from work and my son and dh both trapped me in the entryway telling me their stories. I could not have passed a test on any of it, because I was only processing where to go--what to do--for what in reality was probably only less than a minute. My kitchen has two outs, and I always have to go around the long way when getting ready for work because dh is standing in the doorway.

Joydean

0609, hi and welcome. There is so much we as caregivers have to learn, as each person with dementia is different, so much is very close to the same. It’s all hard and heart breaking. Being frustrated and angry and scared are very validated feelings. Wanting to cry and scream  also.  This forum is like an extended family, difference is many have been through where we are. We learn from each other’s experience. Best of luck to you and your family.

Iris L.

Butterfly Wings posted compassionate care strategies of the 7 A's of Alzheimer's on the Caregivers' board.  It will help you.

Iris L.

MaryG123

Very helpful!  Thank you Iris.

 https://www.vha.ca/2021/compassionate-care-strategies-using-the-7-as-of-dementia/

Crushed

Arrowhead wrote:

. As dementia progresses, the brain digresses. It regresses to its younger self. The skills and intellect that it gained early in life; it tends to lose in reverse order as dementia takes its toll. Like a young child, they don't realize the consequences of their actions on others. One of the hardest lessons for caregivers and family to learn is to not take it personally.

The brain is damaged There is simply NO evidence of regression especially in vascular dementia
What happens is loss of function due to damage
Damaged brain produces the symptoms but its not regression 

My mother could no longer walk or feed herself but could sing many songs, 
 My wife lost mathematical ability completely many years before losing speach

etc

CStrope

Someone once said to me that when you're a caregiver of someone with Alzheimer's, you are literally watching someone lose their mind.  

I remind myself of that when the day gets too much for me to handle.  It's not the nicest way to look at the situation, but it helps me keep some things in perspective.

alzsarah2

I also am embarrassed and disappointed in myself for not being more patient. I am realizing that my husband is more clumsy and less able to plan and strategize. He likes to be helpful in the kitchen and when I ask him to chop onions, garlic, cucumber, etc, he wants to know how I want them chopped. He asks me for very specific instructions and I get frustrated with his inability to understand the concept of "chopped, diced, minced". I have to take extra time to demonstrate how to do the cutting up which slows down the cooking process. I know I have to "be in the moment" and enjoy the time we spend together because I know it is limited. He needs a lot of help with technology. I never thought I was that tech savvy but he is so slow with using his phone and computer that I blow my top and end up causing him hurt and anger. I have a new mantra, "It's the disease. Be patient". It is SO hard! I totally get it.

abc123

You are not selfish. You are tired and worn out. This disease is absolutely terrible. I hate it, for all of us.

0609

Thank you all for being so supportive! To alzsarah2  yes watching and experiencing his issues with the phone, computer and tv remote is sooooo frustrating.

Dale

0609

I’d like to take the phone away but really don’t know how to do it.  Any suggestions?

Dale

Iris L.

alzsarah2 wrote:

I  He likes to be helpful in the kitchen and when I ask him to chop onions, garlic, cucumber, etc, he wants to know how I want them chopped. 

PWDs eventually should no longer handle knives, use the stove, or power tools, etc.  This is due to agnosia, inability to recognize things, and apraxia, inability to manipulate objects with the hands, among other deficits.  It will help to substitute safer but failure-free activities.

Iris