Trying to remember to be normal

RobertsBrown

I hired some part-time farm help.  As part of the discussion laying out expectations and duties, I had to explain to the person that I lived as a full-time caregiver to a person with dementia, and as such I have developed some habits that need explaining.  "If I tell you water goes in the bucket, or don't let the horse out, or feed horse feed to the horse, or close the gate, or any one of a thousand obvious things, it is not about you.  It's just that I am forgetting how to have adult conversations."

One example, but I am sure you have plenty of your own, and the challenge for me is to watch my slippage.  As a person who does absolutely everything, I am becoming a person who does not know how to let other people help, or do stuff, without my involvement.  Taken to it's logical extreme, after another 10 years of this, what kind of monster am I gong to become?  I don't think it's hyperbole.  I think I need to work out a plan so I don't become insufferable over time.

Assuming it's not too late.

ButterflyWings

Wow. You are right, RB. Me also. I have changed so much already and probably forever. And we are not even at the end of the AD road yet, at my house. 

One things for sure, in addition to just doing things myself without any expectation of real help, I’m much more comfortable telling folks to kiss my grits, if necessary. Just don’t have a lot of time and patience for foolish games anymore. I’m actually ok with that. 

RanchersWife

On our ranch, an open gate can mean $1000s in losses (hay, feed, animals lost or killed by predators). It’s normal to obsess about gates! We even obsess about how we latch certain ones. Hang in there. I hope your hired hand works out. Good help is hard to find.

M1

Amen to that, good help IS hard to find.  I think caregiving changes us all RB, as does parenting.  You just end up in a different place.  It's all part of normal though.  Don't worry too much, I am sure you will be fine.

DrinaJGB

I agree about being so used to doing everything you don;t even ask for help any longer. It has been that way for me for over a decade. I have become a robot of sorts. As far as becoming a monster that is highly possible in my book as I no longer recognize the person I have become.

Just last week I had a fence company out to replace all of my fencing on my property. The men were so respectful and so kind. They saw me taking my DH for walks daily as they worked on my property. They knew he wasn't right.

 When I was talking to the owner I mentioned DH had suffered a brain injury and now has been recently diagnosed with mixed dementia. He told me that his brother (his partner) lives close to me and to call him if I ever need help with any kind of emergency such as DH  falling. They grew up around here and their mother also lives close by.

I was so blown away by this sincere act of kindness that came out of the blue and was so unexpected at this point in my life. Our own daughter lives close but hardly visits any longer or calls. I was so touched by the compassion of these men that to my surprise I found myself crying as soon as I walked back into my house. I guess I am just not used to it.

Quilting brings calm

Oh, the must be in control feeling.  Been dealing with that ever since my first child was born 40 years ago.  It’s magnified by taking care of my husband ( not dementia, rather diabetes, depression, vision issues), and now being the caretaker of my parents( they live in assisted living). Also magnified by what I did for a living.  Planning and dealing with possible issues was a large part of my IT job. My sons get so annoyed with me when I try to be a backstop for their lives.  I don’t know how to turn the ‘must be in control’ off.  My guess is it will never go away. 

sandwichone123

I go out to dinner with my dad once a week. I have to remind myself to let him open the door for me. I often give him help he doesn't need and doesn't want because I'm just so used to running interference with reality for my dh. My dad is usually gracious about it, except opening the door. He really wants to be out with a lady and open the door.

Joydean

Drina, I can so relate to what you just said. In the past 2 weeks I have had the plumbers out twice, had to have a new roof put on. Then Monday I got a call from the company that checks our septic system, telling me there is a leak by one of the heads, I could not have it, I told the lady I could not handle one more thing. She was so nice to me, that always gets to me, she said she have someone come out today and there would be no charge and she would pray for my family. I broke down and started crying and was so afraid I would never stop! That has been one of my fears. Thank God there are good people still.

JoseyWales

I totally get what you're saying.

I'm still working, and I feel like I can't expect other coworkers to do what I ask without several reminders. I'm always worried that things won't get finished unless I do it myself.

And I can't help but think everyone older than me won't remember what I've told them. Which is bad, because I'm only 54. (Insert laughter here)

Buggsroo

This made me laugh ruefully. I often have to tell my husband things over and over again. I have to try and stop myself from doing that with ‘civilians’. I just have to keep reminding myself that I am outside the house and I can behave normally.

Rescue mom

I wonder so much if I will be able to act like a normal person, with normal people, again. My fear is becoming like those lonely old ladies (why is it never a man?) at the grocery, who glom onto strangers and talk a blue streak about…nothing that matters to a stranger.

When I do get out (and I can, more than many) I struggle to find conversation that’s not about DW and Alzheimer’s—which nobody really wants to hear about. And petty as it is, it’s hard to hear friends going on about their wonderful travels and plans (a lot of which we once did and had planned to do together) when your whole life is being a caregiver.

I was telling my therapist about the lack of daily conversation as we’ve all talked about here; and the constant walking on eggshells to avoid another meltdown. She said “that sounds so lonely.” That was when I broke down. Yes. Yes it is. And I hate sounding so  pathetic.

My former work required me to meet and talk with all kinds of people, lots of them, daily and I loved it. I miss that so much.

Stuck in the middle

Rescue mom wrote:

My fear is becoming like those lonely old ladies (why is it never a man?) at the grocery, who glom onto strangers and talk a blue streak about…nothing that matters to a stranger.

Sometimes it is a man, although I see them more in restaurants than at the grocery.  I have that same fear.

When this is over, if I am alive, I think I will return to volunteering at the grade school.  Make some younger friends.