Sunday, August 28, 2011

The Rhythm of Our Days

Mom had picked up one of the Anne of Green Gables books and had recorded the title and author here.  She'd also spilled her water on the notebook!  
Routine is important for Alzheimer patients.  I remember during the early days of my caregiving journey that it was difficult to establish those very routines that would later provide my mother security and a sense of peace.  We both had challenges to face as we learned to be caregiver and care recipient.  Mom's challenges came because she could not remember, but my difficulties were mostly because I lacked experience and was learning as I went.  

It is a common misconception that Alzheimer patients cannot learn new information.  In my experience with my mother's Alzheimer's disease, I've found she is able to learn, but she requires many repetitions and visual prompts to do so.  Keep in mind that my mother is still in the-mid stages of Alzheimer's--approximately early stage 5.

Here are some of the ways we have established routines that have made my mom's days run more smoothly:  

  • She receives her medication, meals, and snacks at about the same time each day.
  • I use a large white board placed in her direct line of vision to record the day's events.  This helps her to remember that she has had interactions with other people.  Otherwise, she begins to feel that she might be neglected.  
  • A clock and a calendar are very important for my mother's peace of mind.  And so these have been placed within her direct line of vision. 
  • Easy access to a notebook and pen is a must.  My mother already had established the habit of journaling, and so this was not a new behavior.  Dementia patients are greatly helped if they can form the habit of recording the day's events.  Mom was in early/mid stages of A.D. when she came to live with us, and was able to establish the habit of keeping a running record of the day's events as a memory aid. 
  • I've established a regular sequence of events for rituals such as dressing and bathing.  We follow this sequence every day.  Mom never remembers the sequence well enough to anticipate what she should do next, but she is able to remember that she can ask me.  Her initial resentment at having to take direction from me has dissipated over the years.  I'm her go-to information source now; I really think she has a similar relationship to me as I have with the Google search engine.  Anything Mom needs to know makes her think of me (sigh). 
When I first became Mom's caregiver, her resentment at needing my help was a real barrier to achieving positive interactions between us.  If the caregiver can remain calm and kind it's possible this initial resistance to accepting help will fade.  I've found that if I exude an attitude of calm confidence that what I'm asking Mom to do is best, that this often helps.  If I get irritated I may as well give up and come back later.  

 For me the rockiest days of caregiving thus far have been those early months of adjusting to one another in our new roles as caregiver and patient.  It took nearly a year for the adjustment to be complete.  During that first year Mom suffered a fall that broke her collar bone followed immediately by a bout of pneumonia.  Who would have thought that seven years later my caregiving duties for my mother would actually  be lighter than they were then?   There have been no more falls, and at 87 years of age, Mom is in good physical health.   I share this to in order to encourage new caregivers not to give up too easily.  Some dementia patients can experience improvement and adjust to a new living situation, given proper medication and time. 

3 comments:

  1. You are giving great advice. It's so important to remain calm even when it feels impossible! Trying later when the irritation is rising.... very good advice as well.

    I enjoy your blog! I have such a passion for those dealing with this disease. A friend recently asked me if I would like to be a part-time in home caregiver for her parents. uh, YES!! Looking forward to it!

    Have a great day!
    Doris

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  2. I enjoy reading your blog, it puts me in a calmer place. I'm a caregiver too and I have to say caring for my mom with Alzheimer's has been the most challenging thing ever! It's not my first time at this rodeo, my maternal grandmother had Alzheimer's when I was younger.

    I know keeping calm is the best thing, but I'm dealing with Alzheimer's 24/7, around the clock with no help, and most times I'm on overload. I know there's reward in caring for her, but I'm unable to feel rewarded or as if I"m doing any good because there's always something to do, un-do or to attend to.

    Doris who commented on your post; it's nice to see she wants to be a caregiver, but I hope she doesn't go into it blindly thinking everyday is going to be calm and sunshine. There will be days, as I'm sure you know when you're called a derogatory name, no fault of your own or theirs, or as you mentioned the behavior is challenging. You know in their right mind they would never say or do the things Alz has them do - the illness takes so much away.

    So I say thank you again for bringing me to peace when I can't summit it for myself. I've referenced your blog in one of my posts for others. I'm writing about my journey here: www.confessionsofamastercaregiver.com

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  3. You know Pamela, I was just thinking of a new post about how to respond when my mom says something rude to me. It is so difficult to respond as a caregiver rather than as a daughter. I vacillate between the beatific calm of a professional caregiver and the angst of an angry (and not very mature) daughter. *Sigh! I look forward to visiting your blog.

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