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,

Linda

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 problem...how 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!


Wednesday, August 30, 2017

Releasing Negative Emotions

This morning I was pondering whether I still have encouragement to provide people who are still in the trenches of providing intensive caregiving for loved ones.  My mother has entered nursing home care, and, after a year-long adjustment through emotions ranging from anger on Mom's part to grief on mine, we are at a better place.  I've moved past that time of nearly constant challenges related to taking care of Mom.

I remembered the Youtube video series I completed in 2014.  This was something I felt the Lord wanted me to do, although it was beyond my ability level not only technologically, but because I've never been able to do a talk without reading from notes. I worked for a long time trying to use a teleprompter app with no success.  Finally, one day, I set everything up and prayed, "Lord, if you want me to do this, provide the words."  And He did.  I still can't believe that I was able to do these presentations with no notes, relatively few stumbles, and scarcely any editing skills.

One of my favorite talks addresses the issues of reconciling past and present hurtful behaviors in one's care recipient.  If you are struggling with negative feelings toward your loved one, this ten minute presentation of material from God, Mom, Alzheimer's and Me may provide encouragement.

With love and prayers for those of you still immersed in the challenges of caregiving, here is my talk entitled, "Releasing the Bad Stuff."  You can watch it at Youtube by clicking the icon in the lower right corner, or just watch it here at the blog:



Sunday, August 27, 2017

Trust His Love

Here is a post that first appeared over at One Hundred Days to Freedom.  With minor edits, it holds comfort for those facing caregiving responsibilities as we are reminded of the Lord's sovereign power over everything that comes to us.

~~~

The Lord shall prevent the evil thou fearest, and sanctify, remove, or lighten the evil thou feelest.
Matthew Henry*

~~~

The idea that God might hurt us in order to help us is flawed logic. 

We risk attributing the devil’s work to the Lord.

Jesus was without sin, 

but He bore the results of our sin. 

The same Holy dynamic is at work in the truth that 

God works all things together for our good**; 

God does not author sorrowful events, 

but He takes responsibility for the devastation they cause

 It is our Heavenly Father’s love

Christ’s sacrifice, 

and the resurrection power of the Holy Spirit

 that has won victory over all that is evil.

 The resurrection theme Jesus has woven into each of our lives 

allows us to anticipate His provision and blessing 

both in this world and in the next. 

We serve a God who has promised us good and not harm, 

a future and a hope.*** 

We can rest in the certainty of His love. 





*Matthew Henry’s concise commentary on Psalm 121, public domain
** Romans 8:28 
***Jeremiah 29:11

--from day 63

Thursday, August 24, 2017

Monday, August 14, 2017

Tracks on my Heart

That's Mom's addition on the right in this photo. We escorted her down that ramp for a walk nearly every day for 12 years.  
When my mother was diagnosed with Alzheimer's disease in the spring of 2004, we spent the following summer building an addition on our house so we could bring Mom to live with us.  The apartment included top-of-the-line laminate flooring, a handicapped accessible shower, a kitchenette, and a big bay window; Mom had everything she needed. For the next twelve years my husband and I provided her care.

During these years I made a poor choice of a floor-care product for Mom's apartment. It was a hardwood floor cleaner, that, unbeknownst to me, left a residue behind. Each week we would spread another layer of this glossy stuff on Mom's floor, and the smudges and scuffs would be temporarily polished away. After Mom moved out last fall, I decided to deep clean, and so I used an ammonia solution to remove the old polish.  To my dismay, layer upon layer of the polish had accumulated. Even now, after multiple cleanings, the track marks from Mom's walker resurface a few days after I've scrubbed.  I don't know how long it will take for the marks to disappear for good.

This morning I was reading my Bible and praying when an illustration came to mind.  Daily realignment with the Lord through Scripture and prayer is like a thorough scrubbing that removes the pain of the scars our hearts bear.  If we fail to seek the Lord regularly, we carry the burden of the tracks our sorrows have made upon our hearts. The resultant emotional pain impacts our treatment of others so that we are unable to channel God's love in a way that helps and heals.  Apart from the Lord, we are misguided to wrong goals, and we become relief-seekers rather than needs-meeters.

It's liberating to remember we aren't in charge of healing ourselves, or even of figuring out what is wrong so that we can focus on doing better.  Our only responsibilities are to seek God first, and then to trust Him to take care of the rest.

~~~

But seek first his kingdom and his righteousness, and all these things will be given to you as well.
--Matthew 6:33


Saturday, August 5, 2017

Before and After

I've always felt a sense of responsibility to the caregivers who read this blog. When readership was at its height, I knew that a number of my fellow caregivers depended on the strength I found in the Lord as a source of encouragement.  I've felt badly these past months not to post more regularly, but I came to the end of myself.  After we placed Mom into nursing home care one year ago, I fell into a grief of mind and spirit that has been one of the darkest times I've known.

I don't know how to explain how I survived this time without sounding trite. I will not slap a platitude upon grief-induced depression just because it is more of the mind and heart than of the physical body. During this time, even the effort required to open my Bible was difficult, and the words on the page would run together meaninglessly.  I subsisted on a verse or two of Scripture a day and spent a lot of time crying out to the Lord with my sorrows. But through all my misery there was a slender thread of assurance that the Lord was with me in it. Maybe this quote from my mother will shed some light: "There have been times in my life when I let go of Him, but He never let go of me."

I suffered a series of physical ailments that forced me to the solitude and security of home. I wanted badly to escape into the distraction of church and community activities, but even as I suffered one minor illness after another I understood the Lord was showing me that running from my misery would only lengthen its duration. It was as though he gently ushered me to a quiet place apart, and kept me there.  I spent my days doing housekeeping tasks that could not be avoided. I visited my mother most days, and did the necessary bill paying and paper filing, but it was like wading through deep water. It was somewhat like being isolated by a cloying, dark mist so that all my senses were dulled. It was as though Lord provided just enough strength for the necessary activities and then withdrew His enabling power.  When I inquired of him (time and again with tears and shouting and journal pages filled with my sorrows) I received one word: rest.  Over and over again.  Rest!

My sorrow had its roots in physical and emotional exhaustion from a rocky final year as my mother's primary caregiver. It has taken me a full year to assimilate what has happened to me, regain my emotional balance, and process the grief of all that my mother's Alzheimer's has taken from us.

One morning last week, a year from the day that I had escorted my mom out the door from the home she'd had with us for 12 years, one year from the date that I entrusted her into the care of others, the burden of depression lifted. It was as though scales fell from my eyes and I could see in color once more.  I walked into my living room, stared with distaste at the 1980's fireplace brick, and rummaged around in my basement looking for supplies to rejuvenate it.  I spent all day with spray paint, chalk paint, and 3 boxes of plain white chalk.  When I stepped back and surveyed my work, I felt unreasonably happy: dancing and singing happy!  I can still do things.  I can have new life following this season of caregiving!  The Lord has been good to me.

Healing is a process, and I've experienced minor setbacks. A wave of sorrow here, a day of exhaustion there. But I am better.  I am getting better.

The point of this post is to encourage anyone who is in the midst of a what I call caregiving recovery period (the time of transition away from the role of primary caregiver) to give yourself time and space to heal. Don't jump into a new phase of life until you have had time to regain your physical, mental, and emotional balance.  Pray for a space apart and cry out to the Lord.

Even if you let go of Him, He won't let go of you.