Monday, August 19, 2013

Caregiving is NOT Parenting!

When I became Mom's caregiver, the skill set that helped me most was labeled "parenting."  Bathing another person, changing a diaper, selecting and laying out clothing for the day, meal preparation; all these things echo the ministrations I once provided my toddlers.  The vigilance needed to keep a small child safe is a learned behavior, and I remember a strong sense of "deja vu" when I began to care for Mom.  I clicked back into the attentive mindset and willingness to be on call 24/7 that my children had required of me when they were young. 

However, an elderly person--no matter what stage of dementia--is not a child, though behaviors may become childlike.  This is such an important delineation:  although similar skill sets may be involved, caregiving is not parenting.  For example, it is never appropriate to discipline an elderly care recipient.  All too often I am tempted to say something like this to my mother, "You chose to behave that way, and so now you have to face the consequences."  Dementia patients have no memory of sinful/rebellious/negative choices, and to remonstrate with them for behaviors they have forgotten is not only fruitless, it can damage the tender hearts of these vulnerable people God has entrusted to our care. 

It is important to accurately discern caregiving issues versus patient issues.  This is more difficult than one might think.  Indicators of confusion over these two areas are signaled by statements such as this, "She just won't stop doing thus and so..."  or "I've told him and told him and he just won't do what I ask..."  Dementia patients have lost the ability to change in response to environmental cues.  It is up to the caregiver to change the environment, and not in a punitive way.  For example, when my mom was driving me mad by rummaging through the freezer compartment of her refrigerator, looking for something good to eat, it was my fault and not hers when she gouged out a serving of raw meatloaf for herself.  I'd taken to using her freezer to store meals I prepared for our family.  Solution:  I began using that space for frozen vegetables and fruits--if Mom gets into those it is no big deal.  The meals I prepare in advance are now delegated to the chest freezer in the basement.  But I admit I attempted fruitless solutions first, at first asking Mom not to get into the freezer (HELLO!  She has Alzheimer's--she isn't going to remember my heartfelt request).  And I blush to tell you that I duct taped the freezer closed and then was angry when Mom thwarted this strategy by removing the tape. 

As caregivers we have to be very aware that the "tough love" we exhibit to children is not an appropriate strategy for dementia patients.  When something is amiss in the caregiver/patient relationship, it is almost always the caregiver who must be humble enough to make a change of behavior.  Humility is key.  Respect is paramount.  Dementia patients are not children.  I pray to empathize with my mom, to remember that she has lost so much in terms of independence and free choice.  It is within my power to see that she does not lose fulfillment of the most important human need of all, which is to be loved.  I must not withhold my love from Mom when her dementia related behaviors displease me, and I need to be mature enough not to respond to her in anger for behaviors she can't remember.  She needs me to be steadfast in my acceptance and love for her regardless of her behavior. 

Sunday, August 11, 2013

Bear With Them, Love Them

I've written about my mother's case of "pleasant dementia;" she enjoys life, doesn't need constant care, and is happy to spend time alone with her journal, books, and music.  But there is an unpleasant part of her dementia-related behaviors that I feel I should discuss here, and I'm praying to do it in a way that honors Mom but yet assures other caregivers they are not alone.  I also need to write this post for the sake of dementia patients whose upsetting behaviors might otherwise be chalked up to plain old meanness that is deserving of a like response. 

Keep in mind we have a tendency to view the past through the lens of the present, so when an individual's current behaviors are mean and bossy there is a tendency to say, "You know, I remember other times my loved one was like this, and I see now this is nothing knew; they've always been this way!!"  Be careful about this tendency to let the present rob you of positive memories.  Be intentional about remembering ways your loved one has blessed you in the past.  Make a list if you need to.  Alzheimer's disease brings forth behaviors that, in the general population, would be labeled in negative ways.

Becoming dependent on others for care in combination with the confusion of dementia is a vicious one/two blow.  A dementia patient loses freedom of choice that those of us who function independently take for granted.  My mother's meals, clothing choices, finances, and surroundings are all orchestrated by me, and I do not always take her suggestions graciously.  I'm tired, I do everything for Mom, and if she suggests that I have not straightened the cushions on the couch to suit her or that she would like me to change the painting over the chair, I'm likely to convey impatience.  I'm ashamed of this tendency; I need to remind myself that a dementia patient's ability to ask for help outlasts the ability to carry out the multiple steps required to complete a task independently.  I know I ought to be kind and work hard to respond to Mom sweetly when she treats me like a waitress or housekeeping staff.  

I have a hard time with Mom's imperious ways, and I've noticed others do as well.  She has adopted the attitude of one who is paying for services that don't quite measure up to her expectations, and this makes people respond to her negatively.  She also is quick to respond sarcastically (if not appropriately) as though to prove that she understands what's going on well enough to make comment. I've learned that many dementia patients display similar behaviors.  Not long ago I overheard a woman complaining angrily about her sister, who had just been diagnosed with Alzheimer's.  "She expects me to wait on her hand and foot!  She orders me around like a servant! And she is RUDE to me!" 

Nursing home workers, home care providers, and anyone who works with a dementia patient need to remember the patient has no real power.  As caregivers, we are calling all the shots for our care recipients, and for the most part their behaviors have no power over us beyond that of annoyance.  We are the strong ones in the relationship as our care recipients cling desperately to shreds of free will that have been robbed from them by the horrors of forgetfulness and physical infirmity.

As care providers we can submit with good humor to being ordered around, do a little extra work at the care recipient's command, and continually remind ourselves of the underlying pathos of life circumstances that have placed these dear ones in our care.  Treat them gently, and with love.  Respond to poor treatment with kindness and resist the urge to respond in kind.  They are not children who need to be disciplined, they are old people who have lost nearly everything they once held dear.  Let's not take our love from them at a time when, no matter how they are acting, they need it most.

We who are strong ought to bear with the failings of the weak and not to please ourselves (Romans 15:1).  

Sunday, August 4, 2013

Gratitude for Forgiveness

Do I make my relationship with my mother sound idyllic?

Well, it isn't.  I get by every day on grace.

If you think the principles revealed through my writing are only for easy Alzheimer's patients and their Very Godly caregivers, think again.

I was going to record, to the best of my memory, a recent verbal exchange with my mother; one that would serve to convince you that there are times when I am not a good or kind caregiver.  But I felt a stop in my spirit; forgiven sin is removed as far as the east is from the west and we aren't to keep a record of wrongs, not even our own.  Suffice it to say that my words were not only rude, they were mean.  Good caregivers are not rude and mean.

I came to my prayer closet and opened a journal file.  Sighing, I began to think of how to word my confession...and instantly, before I had even placed my hands upon the keyboard or gathered my thoughts, the Lord touched my heart with these words:  "You are forgiven." 

I don't deserve forgiveness.  Doesn't matter.  Jesus loves me.  He forgives me.  He died for me and He lives for me.

He loves you.  He forgives you.  He died for you and He lives for you.

Aren't we blessed?