We had such a nice morning on Saturday. I listened to Table Talk while making pancakes and everyone seemed to be getting along so well, and happy to have slept in. (:
I got my mother up and dressed – she had her usual muffin, banana and coffee and was enjoying a Hallmark movie. I checked in on her several times, took her to the bathroom and all was going well.
A bit later, my mother had gotten into something she shouldn’t have, making a terrible mess. My first inkling was to correct. Oh, it’s so hard to think that correcting doesn’t help, and at times makes it all worse. I took a deep breath—which I know I was able to find again because of the added daily help I’ve been receiving. I gently reminded her that we don’t do this, but even this tiny reminder I should have refrained from.
When we get into situations such as this, I can’t tell you the frustration that goes on inside of me. Generally something like this happens when other things need my attention. So often inside I am so impatient; I feel like I need a person here on earth to apologize to for these impatient thoughts.
My mother doesn’t understand there are choices that are just not appropriate; she doesn’t understand enough to make a different choice (like call out to me).
All through life, we challenge each other to be stronger, better, able to accept our responsibilities and how they affect others, work on admitting when we’re wrong and learn how to correct ourselves and others. Dementia again though stands alone. Anything that we understand and put into practice doesn’t really follow with dementia.
I’m so grateful for the extra help that I have. It’s okay that I can’t do this alone. For years and years I never would have thought this way, but again: Dementia stands solo. I need the help, mainly because I need the extra breaths.
Sunday night my mother asked: “Who do I talk to about going to bed?”
“You talk to me, Mom, you talk to me.” Dementia definitely moves its victim to unique places sometimes minute by minute.
My new question however is: Where does dementia move the caregiver to? It’s not an easy answer and sometimes the place changes minute to minute as well.
You are a disruptor. The delivery of health care starts with you, continues because of you, and ends with you. Let's disrupt together to make the world better for family caregivers. 
Denise
Hi Bette–I’m so sorry about the mess! I can so understand the frustration. It is frustrating!
Does the video monitor help you keep an eye on your mom? I’m curious as to how helpful the monitor is for you.
I think it’s nice that you’re the one your Mom speaks to about going to bed.
I think we all need help throughout our life. When we go solo, especially during a tough time in life, we go crazy. The help gives us breaths and sanity.
Bette
Thank you Denise. Unfortunately the monitor does not work well for us. The screen times out, so if my hands are busy, I can’t push the button that gives me back the picture. Unless someone is sitting with my mother, these challenges are going to show themselves. ):
I did purchase t-shirts from Buck and Buck for my mother which will be a help at certain times.
Denise
UGH re: the monitor. It would be wonderful if there was something out there that could help. And, it has to be mobile, something that goes with you as you move from room to room in the house, AND something that does not time out.
I had forgotten about the clothes from Buck and Buck.
Have you had any more incidences?
Denise
You’ve given me some food for thought. It would be fun if I could find an expert on gadgets and devices who could come on the show to share product ideas that can help solve some of these issues. Hmmm… I’ll see who I can find!
Bette
That sounds wonderful Denise. Thank you!!
We have had two other incidences since ):
Natalie
I’m not sure what kind of monitor you have or are looking for but I know that many of the baby monitor can be connected to mobile devices (iPhone, smart phones) and the internet and should be able to give you 24 hour access via video. They also are set up where the camera will move when the person moves. You may already know this but just in case you don’t.
Kathy
Bette,
What monitor did you get? If it’s the one I have you can set the screen to stay on all the time.
Bette
Hi Kathy,
I think it is the same as yours – I’ll check the directions. Thank you!!
kristin
I’m chiming in late on this one, as my computer has been down more than up, thanks to Hurricane Irene, and now TS Lee, and this email got lost in the shuffle. Bette, I can SO relate to the frustration of having to bite my tongue not to correct, especially when I have to redirect Mary from a totally inappropriate action. Then I need to decide whether or not the inappropriateness is a safety issue, or one that will cause a mess, or one that just goes against my grain. And then, how do I redirect so that it moves things forward rather than just gets us stuck in a power struggle?
Re: the video monitor. Do you actually need to see what your mother is doing, or can you tell from the noises she makes what she is doing? I use a Sony baby monitor that can be worn at one’s waist. It has one transmitter, which I have in a central location, and two receivers, one of which is stationed by my computer, and the other of which is hooked onto the waistband of my pants. I can be downstairs in my apartment or outside doing yard work and hear everything Mary is up to. And I know if she is moving, she’s up to SOMETHING.
And Denise, if you find that gadget person, see if s/he knows of a simplified tv remote that folks with dementia can use without screwing everything up!
Bette
Thank you Kristin for your comment. Sometimes caregiving can seem like constant planning, and thinking ahead, can’t it?
Trish
Bette, I can completely relate as well. I can physically feel the frustration well up in me when Robert isn’t listening and keeps doing something he shouldn’t (sometimes it involves a mess; sometimes it is a safety issue). Robert tends to want to conserve toilet paper (using only 1 – 2 squares) for some reason which can create real problems as you can imagine! Use as much as you need, bro!
I have to manage my frustration better (I always feel guilty afterwards if I show my frustration to him).
As far as the technology, I’d love to get the type of monitor Kathy and you use as well as have a gadget person come on Denise’s shows to discuss gadgets.
Kristin — a simple remote would be a dream come true! Where can I buy one for me to use?
Natalie
Here’s the plan: we’re going to all get together and yell at the same time at each other and then laugh hysterically…or we can go insane. I relate all too well. It takes the strength and patience that only God can give to keep me from correcting and losing my cool. My husband does some very odd things that are just so very frustrating and I’ve discovered the more I correct him the worse it gets. My situation is unique in that my husband does ask sometimes what he is doing wrong and then I’m able to share in a calm manner a different way of doing things. I can hear our six year old speaking harshly with his dad and it’s such a slap in the face because I know he has seen/heard me do the same.
Bette
Thank you so much for your comments. I thought of each of you this morning. My husband woke me at 7 – my mother was awake and again, in this same behavior pattern. I may have to begin sleeping with a monitor next to my bed. I was avoiding this because she is not as sound a sleeper as she once was.
I thought of each of you and the comments made here, which was such a help. Thanks.