Saturday, December 31, 2011

New Year's Caregiving Resolutions

My mother was diagnosed with Alzheimer’s disease nearly eight years ago and has lived with us for seven of those years.  I’m always amused when people say, “I couldn’t do what you have done.”  The truth is that apart from divine help there’s no way I could do what I’ve done either.     My theory is that since the only materials the Lord has to work with are weak and imperfect human beings that He’s sort of used to filling in the gaps.  Let’s just say that with Linda wearing the title of “caregiver,” the Almighty has had His work cut out for Him.

These past eight years I’ve learned the truth of this statement: when God has a plan, we can trust that it is a good plan; and that He will help it to be implemented.  It was His plan for me to become my mother’s primary caregiver, and I haven’t done the best I could, I’ve done the best that God can do through me.  And so things have gone pretty well.

This is not to say that I’m not adept at blocking the Lord’s good intentions, and so I’ve written a few New Year’s caregiving resolutions: 

1.  I will not be jealous of my mother’s affection for the cat even though I’m pretty sure she likes the cat best. 

2.  When I can’t think of a word and my mother instantly supplies it for me, I will not lapse to morbid fears regarding my own cognitive functioning. 

3.  I will spend more time being grateful that Mom is still with us and less time worrying about when she will leave this world for the next.  God is in control. 

4.  I will stop worrying about whether or not I will get Alzheimer’s.  God really is in control. 

5.  I will exercise and watch my diet so that I can lessen my risk of getting Alzheimer’s, but I won’t obsess about it because God really and truly is in control. 

6.   I will think of new ways to make sure that Sandy (our respite caregiver) knows how much we appreciate her. 

7.   I will stop explaining to store clerks that the Depends I’m buying are not for me. 

8.  I will spend more time just sitting with my mother and enjoying her conversation, which is still witty and spiced with nuggets of wisdom. 

9.  I will waste less time feeling sorrow over what has been lost and more time being grateful for what we still have. 

10.  I will thank God daily for my co-caregiver extraordinaire, my husband, even though I’m pretty sure Mom likes him best. 

Tuesday, December 20, 2011

On Feeling Invisible

As a caregiver do you ever begin to feel invisible?

Sometimes it seems to me that my own needs, worth, dreams, and desires have become not only invisible, but unattainable; crushed beneath the weight of the needs of others. My mother, former champion of everything Linda, no longer sees me as the object of her affections; I am now the meeter of her needs.  "What would I do without my Linda?" she asks, smiling seraphically. And then,  "Honey would you get me some coffee (Kleenex, an afghan, some crackers, sit down and talk, come see me more often, etc. etc. etc.)?"

This is not who my mom was pre-Alzheimer's. She is not being lazy or selfish.  "In Alzheimer's disease the ability to ask for help outlasts the ability to perform the multiple steps required to carry out a task for oneself."  That last sentence is straight out of the PowerPoint presentation I've given to several groups in the past couple of years.  I wrote those words and I know they are true. 

But I am caught in that "sandwich generation" time of life, a time when I consistently am called to place the  needs and desires of others above my own.  Resentment and bitterness are dangerous snares for those who feel they've been made invisible through caring for others.

This morning I realized that I've once again fallen to resentment, but not toward any human being. Resentment and anger toward the Lord have crippled my walk with Him of late. I finally confessed this to Him. I feel like the middle child who is flanked by a more accomplished and worthwhile older sibling on one side and a cuter and needier baby on the other.  Ignored.  Invisible. 

Here are the thoughts that flowed through my mind  in the wake of my confession:

God knows you completely.  He has accepted you, and He loves you.  He loves you because you belong to Him; you were sculpted by the artist who is perfect and all He creates is good.  You have resented the feeling that you are nothing apart from Him because you know you are good only because of Him.  That is true, but only in the sense that a perfectly cut crystal is not beautiful if there is no light.  He is your light, there is no other who can illuminate you; all other so-called lights are either counterfeit or so inferior that they are scarcely light at all.  Apart from Him, you can do nothing, but in Him, you are beautiful; don't you see this precludes pride and creates gratitude?  It isn't so much that you are nothing without Him as it is that you are invisible apart from Him. There is tragedy in the thought of a beautiful jewel trapped in darkness. Stretch out your arms in the warmth of God's light, and rejoice in the fact of the beauty He has provided you, beauty that is of God your creator; rejoice in what He has wrought in you by His hand, rejoice in His light.  

I don't need my mother's appreciation or approval. I don't need the attention and applause of human beings at all.  I can serve because I am loved by my Creator, who saw what He made and called it "good." When I abide in His light I can bask in His approval, and that's all I need.

Becoming a servant offers the opportunity for me to rid myself of pride and to emulate the Lord Jesus Christ. It means reflecting His light and giving up the attempt to shine with a light of my own.  It means putting the needs of others ahead of my own.  Frankly, I'm not equal to the task.  But the blessed fact is that when I come to the Lord and with tears of grief over the demise of my own carefully constructed plans for the future yet say, "Thy will be done," He goes to work in my heart and mind.

Sometimes it just takes my pea brain awhile to get on the same page.  I'm here, Lord, and I'm willing to be made willing to give up my rights to myself in order to be more like You.

Monday, December 12, 2011

One of those Caregiving Weeks...

Yesterday was "one of those days" that followed immediately behind "one of those weeks" in my caregiving journey.  Mom had been crotchety and critical, and my store of patience and kindness were at an all time low.  I am sorry to say I had sunk to the level of feeding her bad attitude with a queen sized bad attitude of my own.  I'd stopped bothering with such niceties as a cheerful smile or kind and cajoling words of encouragement and love, and thus was feeding Mom's determined belief that she was not being treated well.  I told my husband that she acted as though she believed herself to be paying for service in a luxury hotel and that she was being cheated because the workers  in this place just were not up to par. 

Last night I went into Mom's room to deliver her evening snack.  I was emptying her trash cans when I noticed she had thrown her head back in a somewhat dramatic looking pose and had one hand limply draped across her brow.  I thought, "Oh for goodness sake."

"What's wrong with you?" I snapped. 

She sat up straight, surveyed me and said, "I was praying for you!" 

I could tell she was telling the exact truth, that she had noted my grim expression when I entered the room and had surmised that I needed prayer.  She was right. 

I laughed and apologized, then said, "Well, maybe you'd better continue on." 

She laughed too. I was humbled by my mother's prayer for me. 

Alzheimer's shrinks the world of its victims.  When memories become like isolated and disconnected islands, the patient has only the moment she is in from which to draw conclusions about her circumstances.  Those conclusions are going to be inaccurate much, if not most of the time.  A good caregiver understands this, and ministers to the patient in the moment she is inhabiting, soothing fears and gently reshaping inaccurate impressions. This week I'll be praying for the strength and wisdom to rise above petty irritations and to be the good caregiver my mom needs!