In planning for time away this summer, using Denise’s advice for a journal, I began organizing my mother’s needs during the day.
To organize, I decided to use index cards and arrange my mother’s needs on the cards into a photo album. Each card would have a heading (and picture) and on the back would be the instructions.
I know this is necessary to comprise, but writing down the ‘hour by hours’ made it very apparent the things my mother requires now that she didn’t six months ago.
For example, What to do if: she has a dream; a nightmare; how to describe walking to her; or eating to her; explaining how to sit down on the toilet (which I have to explain to her every 2 1/2 hours or so)…the list seemed to go on. The cards can basically stay the same with maybe a few tweaks on contact information depending on where we are when we are away from the house. 
The writing overwhelmed me in seeing what I do in a day (a lot involves food, verbal instructions and using the bathroom) and in trying to explain my words—that my mother needs to hear—to someone else.
I am so so grateful for the classes I’ve taken here at Caregiving.com. Without them, without my coaching calls, I would have thought: I can’t go because overnights are too difficult.
Tonight my mother asked what I was doing. I explained simply that I was preparing a journal for aides and friends that would be with her when we are away this summer for four days. I compared it to when her and my dad would go away with my brothers (I was born much later). Somehow she was confused. She’s been crying off and on tonight. Telling me she can’t stay alone. She wants to go home. I’ve reassured with words and hugs, but she is very sad and a bit angry tonight.
Yesterday the pharmacy told me that my mother’s Aricept has been changed to the generic brand per the insurance company’s request. What a difficult time for this. Not sure if the emotions are due to the dementia or a change in medication.
The journal is complete (I just need to add some tabs so all can be found easily). I feel very good about that. It truly gives me a feeling of: “I can go.” It takes away a no option (feeling of defeat) mindset.
Now, we will begin to decipher the tears.
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G-J
Bette, what a wonderful idea and a wonderful way to organize things!
I’ll share with you an idea I think I heard on a podcast here at caregiving.com. Take a color photocopy of the pills your mother takes. Use one sheet for each time of day. Label the pills and how many she takes. If there is any mix up, there is a visual way to identify the pills.
Donna
try www,MyMedSchedule.com for organizing all the pills. The checklist is great to fill the pillbox too. It has pictures of the pills too, times to take etc. And it’s free–we are actually a supporter and sponsor of Caregiving.org and think you all do great work
Kathy
Ohhh Love this and G-J s suggestion
Denise
Hi–Bette actually developed this very system for her mom’s pills. (Bette: Can you write a post about it??)
I think the book looks just great. I love how organized it is—its organization makes it so user friendly. And, that’s the goal: For your back-up to use it and to feel comfortable using it.
One suggestion when your mom asks a question: Sometimes, a broad stroke about the truth helps. Perhaps something like, “I’m organizing my day.” Providing specifics and specifics relating to you going somewhere and she stays home may confuse and frighten her. These details may be difficult for her to process.
It’s a change in communication that takes an adjustment. Before, you could explain exactly what you were doing and she understood. She may not have been happy about your break, but she would have understand the meaning of your words. Now, it’s difficult for her to comprehend the concepts—of a future time, of you going away, of her being alone.
I hope this helps.
Bette
Thank you Denise. That helps very much.
I wish there was a guide to help know how to approach these conversations (or any conversation really). I’m thinking pausing a bit before responding is a good start–even with that I’m not sure I can anticipate the confusion. I keep looking for a “rule of thumb” in gently guiding someone with dementia, not sure there is one though.
Thank you so much for your help with the journal, and with organizing – the tabs you spoke of will help very much. This morning my mother is having challenges with diverticulitis. I did not mention this in the journal – now I can add a card for that (:
I’ll post a blog on Pill Pad (: Thanks!
Denise
Hi Bette–I’ll share some tips tomorrow for communicating with Alzheimer’s and dementia. I wanted to share this perspective:
You created a great list of anchors which help you. You can create a list of your mom’s anchors. Her anchors will keep her calm, provide comfort, create a sense of safety. The anchors for your mom may be a regular schedule, an afternoon nap, regular drinks of water, a bathroom routine, consistent contact with you and the kids, treasured photos and mementos, etc.
Once you developed the list of anchors, you can use these in communicating. A regular routine will be important to her, so you’ll be careful about how/when you communicate a change in routine. If she becomes agitated because of confusion, perhaps you can sit with her and talk about a photo or a memento.
And, take as much as time you need when communicating. If she asks what you’re doing and you need time to respond, you can say, “I’m collecting my thoughts.” And, then, you can always ask: “How are things with you? What’s on your mind today?” You’ve bought time and created a distraction at the same time.
Hope this helps.
Jennifer
Bette, you are amazing!!!
What a great idea to make such a thorough and informative “guide book”!!
It’s SO hard to not be a daughter to our mothers, isn’t it? All those times as a teen when she asks “Where were you?” and you either a)lie because you don’t want her to know or b) tell the truth. No one cautions us that there may come a time when you give semi-truthful information because that’s all they can handle – and this is the caring thing to do. Denise is right about the “I’m making a schedule” kind of answer, but it’s SO HARD!!
I can see by what you do and how you express yourself that your mother did a really fine job raising you. What a gift to be able to give it back to her!!
Jennifer
Stav
Thanks for sharing and congrats on finishing the project. Have a great, relaxing vacation and know that you deserve it!
Stav
Trish
Bette, This journal is such a wonderful tool! I love the simplicity and thoroughness of it. Great job. I’m sorry about the communication issues. It must tug at your heart when your mom is upset. You are so good at adapting, I know you will find the best way to communicate with your mom, even if that best way changes daily. Take care and please enjoy your time away. You really do deserve it!