Sunday, September 24, 2017

Letter to A New Caregiver

Dear New Caregiver,

I'm writing to you because I've heard you are at the beginning of an Alzheimer's journey with a loved one. I want to tell you it is going to be ok; you will find help when you don't expect it, respite when you sense you ought not to need it, and heart-healing even if you don't realize your heart has broken.

I want you to know that although God may seem silent and far off, that He hasn't abandoned you.

I remember the days following my mother's diagnosis with Alzheimer's disease.  For weeks and even months, I observed an extended wake of grieving over the loss of my mother.  But...she didn't fade from view,  and she certainly didn't die.  She was contrary and irritating, vulnerable and sweet by turns, but she remained very present.  Gradually I relaxed; my mother obviously wasn't going anywhere for a long time yet.  There are many blessings that unfold gently during a long goodbye, and one of these is time to adapt to change.

God has been so kind to us. I suffered no sudden shock of parting, no terrible, tragic blow.  My mother's Alzheimer's diagnosis merely provided a visible sign of her mortality; I could no longer hide from the fact that most of us outlive our parents. And so, at age 50,  I began the too-long-delayed process of becoming a mature adult, finally able to function without the support of my mother.

Change is difficult, growing up is painful, and there have been challenges along the way. But most of these challenges have fallen more in the category of aggravations rather than tragedies. And now--thirteen years following Mom's diagnosis-- when I make the drive to the nursing home, I am still able to glean encouragement from my mother's smile, comfort from her hug, and to bask in her sincere gratitude for all I do for her.

There have been many changes over the course of Mom's Alzheimer's, but surprisingly, most of them have, in the end, been positive.  The struggles we've faced have been temporary, and have taken us to a new status quo where we almost always have had time to gather our wits and adapt before the next challenge has arisen.  We are at one of those resting places right now; Mom, at age 93, is doing fine, and I've adapted to visiting her only 2 or 3 times a week.  I understand now that these gradual changes will greatly ease my grieving process when Mom finally goes home to the Lord.

This post comes with a prayer that it finds its way to the heart of someone who will find it encouraging today.  God bless.

With love and prayers,


Friday, September 15, 2017

Questions You Might Not Think to Ask...

My mom has been in nursing home care for a little over a year, and we are doing well.  The adjustment period was rocky, though, for Mom as she coped with confusion and anger, for the nursing home staff as they learned to know Mom and her unique set of needs, and for me as I attempted to release old responsibilities and accept new ones.

I admit I had thought that once Mom was released into the care of others, that, other than visiting her as often as I could manage, my responsibilities toward her would be over.

Was I ever wrong!

I feel I must call a warning to families preparing to place a loved one in nursing home care: your responsibilities toward your loved one will, for a season of time after placement, remain somewhat demanding.  If you missed it, please read this post: What I Didn't Know.  (Don't worry, I didn't include EVERYTHING I didn't know--it isn't an encyclopedic post...).

Today I've compiled a list of questions I ought to have asked before we chose my mom's nursing home and in the early months of care:

1. We would like to share a meal with our loved one occasionally.  What is the protocol for that?

Me, looking clueless. 
 We are so blessed at my mom's small nursing home--any time we show up around meal time, they are glad to accommodate us.  They pretty much treat us as though we were very special customers at a restaurant!  This is probably rare--some homes might need you to call ahead or even set a date a few days in advance.  Sharing an occasional meal together can be a wonderful way to help your loved one feel at home in a new setting.

2.  If we need a box of Kleenex, a hand towel, or other supplies during a visit to our loved one, do you want us to help ourselves from the supply closet or shall we ask an attendant to get what we need? I unwittingly offended the charge nurse when I opened the supply closet door to get a hand towel for my mother's bathroom.

3.  Clarify the kinds of caregiving checks you will perform for your loved one when you are onsite. Just be very matter of fact as in, "I will continue to check my mother periodically for pressure sores and to be sure she is changed and clean--may I have your assurance that no one will attempt to prevent me from doing this?"  If this causes defensiveness I would call this a red flag; find another facility.  When I encountered defensiveness or irritation, I was polite. I told them that as my mother's patient advocate that I not only had the right to check her for cleanliness and freedom from rashes, but that it was my responsibility to do so.  And so it was.  While they were learning my mother's needs she suffered redness and inflammation, overflowing adult diapers, and a suspected urinary tract infection.  It took a few months to remedy these caregiving challenges.  I wasn't critical, but when I found a problem as I often did during the early months of time, I drew it to their attention.  This provided accountability for them and was a safety net for my mother.  You mustn't back down too easily when your loved one's welfare is at stake.

4.  What is the procedure to report a caregiving can we communicate efficiently when a change needs to happen?  I should've asked this question even before Mom was placed, but did not. About four months into her care I learned there was an official needs form that could be filled out and handed to the head of nursing.  I've used the form just once, but it was an effective method to communicate a problem quickly to all staff.  I wish I'd known about this sooner.

I don't know that a period of "overwhelm" can be avoided when a loved one is placed into nursing home care, but asking the right questions can help to prevent that clueless sensation I endured!