Dealing with my frustration

Fredthefed

My wife is a very strong nurturing  woman. Her family was her focus and she would always be there to help no matter how hard the work might be. As she moves through the progress of the disease she continues to seek ways she can offer assistance or advice. Unfortunately these helpful actions come as repetitive suggestions or with bad timing. This had unfortunately led to times where I vent by saying enough. I find that she does not respond to casual comments like I can do this or go do your thing and I’ll do this.  I need to find a way to use a safe stop word or way to kindly say we don’t need your help. We have miles to go before things get serious but I don’t want any anger to sneak into what we spent 56 years building  

   

Tfreedz

Fred, all I can say is patience, lots and lots of it!! My mom sounds similar to your wife as far as being a devoted caregiver. Now as her dementia progresses, she is confused by simple instructions or explanations. I have lost my patience and snapped at her, which causes her to feel very upset and me to feel guilty. I’ve watched some Teepa Snow videos on YouTube that suggest taking 5 deep breaths in and out before responding. She says you will actually hold your breath when you feel tense, I didn’t even realize I do that but I do. Hope you find something that works!

jordansfca

Can you give an example? Is she giving advice about something or trying to assist with a task?

GenePT

Hi Fredthefed, I just joined. I have been going to a support group for caregivers of people with dementia. One thing I have begun to learn, is to “enter their world”. Very challenging for me. I tend to want to fix the problem/ behavior. But may I suggest, saying “Oh, thank you,  that’s interesting”. 

It’s like tossing a ball. If she tosses the ball to you, (the idea how to do something) and you resist and toss the ball back to her, she now has the ball again and will toss the ball back to you again and AGAIN.  But if you receive the ball ( the idea)  with “Thank you” , her nurturing heart and the emotion behind the words/ suggestions will be acknowledged by you. She can “feel” helpful rather than frustrated. You are now in possession of the ball. You can simply pause and go back to the way YOU chose to do the task and maybe she will wonder off or you could distract her with a new topic/ task. 

I have found with my 94 y/o Dad, saying “that’s interesting“ works well to acknowledge his comment, but it doesn’t start an argument. Teepa  Snow’s instruction ”do NOT argue, do NOT reason” has become my mantra. 

I’m having little successes and a lot less stress.

harshedbuzz

Hi and welcome Fred.

I am sorry for your need to be here but happy you knocked on our clubhouse door.

I have 2 thoughts on this-

1. Firstly, IME, personality can persist well into the disease process. If your wife was the lynchpin of the family for nurturing and advise, she will likely continue to see that as her role.

Sometimes PWD with similar personalities do well in a day program when it's been presented as volunteering to help others. The break can help a caregiver reset and accept the repetitive aspects with more grace.

2. I found the key to patience was understanding how my dad was experiencing his cognitive shift- getting into his damaged brain helped me understand a lot of his more challenging behaviors. 

This little freebie was the single most important tool for me in terms of doing that-

12 pt Understanding the Dementia Experience (dementiacarestrategies.com)

In reading between the lines, I am a little confused if the "safe word" is meant to protect her dignity when she's among others or if it's to warn her that you personally have had enough. I don't expect that this strategy would be effective, BTW. For one thing, most PWD have a condition known as anosognosia where they are blissfully unaware that they've had a change in their cognition and ability to function. To suggest otherwise is felt as cruel gaslighting. The other problem here is that short term memory often precludes learning new things- like a safe word she wouldn't believe she needs because she isn't repeating herself. 

HB

Iris L.

Welcome Fred.  As a PWD, your wife will continue to say things you might consider to be outlandish or bothersome.  This is what dementia is.  She has a  terminal disease.  Her days need to be made comfortable.  If she wants to help, let her help.  You don't have to follow what she says.  Just let her be.

Iris L 

Fairyland

I’ve had to learn a lot in a few months of living with my mom. Some things help, mainly patience and adjustment on my part.

I try to let her do her own thing as much as possible. I try to prioritise to do some things with her even though I have no interest like work on a jigsaw, do her exercises with her, get her started on a tv program she likes. Sometimes she will get interested, or nod off!  Win or win. When she is busy or distracted, is when I can do my own stuff I don’t want her getting in the way of. 

It is difficult at mealtimes for example, for sure, I turn around with a hot pan and she always seems to be standing  in the way.  I go out to the kitchen and start juggling to get the meal on the table, and she appears insisting to “Help”, again getting under my feet. It also hugely irritated my teen daughter who wanted to make her own snack and then disappear to her studies, not have a “crone” bumbling around in the way. Charming girl.

Teen is in college now so that solved that! Clearly she survived the horrific interruption of her life! 

I have simplified what I do (fo example less juggling less elaborate meals so it gets done quick!). Also I try to time it so she is settled with her cup of tea and a “tedious snack” like a little orange she has to peel, or some junk mail to open, or a card from a friend to re-read. Then I say you do that while I get this done, I won’t be long.

Once that doesn’t work, and CoVID lifts, I intend to send her to daycare or out with a paid career and get those things done when she is out.