An Enforced Schedule of Grief

When my father died thirteen years ago, I withdrew from the shock and grief into a self-protective shell from which I emerged in small increments over years of time. Very slowly, and as I could cope, I dealt with the loss of his presence in my life; and only recently have I come to a point where a sudden reminder of Dad brings a smile rather than a sharp stab of grief.

Caregivers for loved ones with dementia are not allowed this buffer of time that I utilized in the grieving process for my father. We are forced to face the hurt each time we interact with the dementia patient. Every time I enter my mother's room I am confronted by the reality of all I have lost in my relationship with her. For example, one of the first dates that escaped my mother's memory was my birthday. She remembers my cousin Mike's birthday each year, but not the anniversary of the birth of her only child. And despite the fact that she has never yet failed to remember my husband's name, she often calls me by my daughter's name. So often it seems that in every interaction with my mother I am at risk of some unexpected stab of hurt that comes, not as I'm able to face the grief, but according to the whims of the disease that is taking her from me by stages.

On the morning of my December 22 birthday this year, I read Psalm 121 in the English Standard Version of the Bible: "The Lord is your keeper; the sun shall not strike you by day, nor the moon by night. The Lord will keep you from all evil; he will keep your life. The Lord will keep your going out and your coming in from this time forth and forevermore" (Psalm 121:5-8 ESV). Thus as I steeled myself to enter my mother's room and to endure the discomfort of pain of loss of a birthday greeting, I was reminded that the Lord is the keeper of my heart, that I'm not at the mercy of Alzheimer's disease, but instead dwell in the Lord's protective mercy. I found a wonderful commentary on Psalm 121 from Matthew Henry: "The Lord shall prevent the evil thou fearest, and sanctify, remove, or lighten the evil thou feelest."

Despite my awareness that the Lord has lightened for us the evil of Alzheimer's disease, I struggle. I get about an inch from crawling onto the ledge of the Lord's support and freedom from fear and grief, but then I lose my footing and find myself hanging from the very edge of a cliff once again, my fingers slipping while below me swirl black waters of overwhelming grief of loss. Thank God for His patience and mercy.

Prayer: Lord, as caregivers we pray that you set our feet on the solid ground of the truth of the fact that You are sovereign over the interminable grief of bearing with a loved one's Alzheimer's disease. Set our feet on the solid ground of your truth, protect our hearts by the Power of Your Name, work in the hearts and minds of our other family members and grant them understanding, keep us from evil, watch over our lives, in Jesus' Name we pray.

Accepting My Role as Caregiver

A characteristic of many Alzheimer patients is an overuse of paper products. Some patients fixate on Kleenex, shredding or stashing tissues in clothing or other more unusual places. In my Mom's case, chronic sinusitis that is probably exacerbated by Aricept (an Alzheimer drug) causes her to need an abundant supply of tissue. Her trash cans must be emptied twice a day, and yesterday I was on my way through her room dragging a large garbage bag behind me when she began a conversation. I had been Christmas shopping earlier in the day, was tired, and was focused on finishing my chores for the day; but I sat down on her couch to listen, the loaded trash sack at my feet a visible sign of my labors on her behalf.

Mom gestured toward the devotional her granddaughter had lent to her and said, "I was reading this devotion book and at the end of the reading it asks you to list your worries so you can give them to the Lord." She looked at me with a child's wide-eyed wonder and said, "I have the Lord, and I have you. You take care of my needs. I don't have one worry! I have perfect peace!" She smiled happily.

I am afraid that I rolled my eyes heavenward and with more than a tinge of sarcasm said, "Well that must be nice."

She didn't let my sour disposition disturb her--Mom doesn't let much of anything disturb her--and she returned to reading her book, still smiling.

Mom happily partakes of the services I provide for her with no comprehension of the burdens I bear to keep her so carefree. The fact that my mother has no compassion for my weariness or empathy for the difficulties of the jobs I perform on her behalf is the most compelling evidence of her dementia. Earlier in her life she was not comfortable if I so much as offered to get my own glass of water--she would jump up and fetch it for me. Now she sits, complacent, as meals and housekeeping services are provided for her.

That it should be difficult to respond in love to someone who has just expressed glad appreciation for the peace God has provided to them reveals sinfulness in me. God has ordained peace and rest for my mother during these final years of her life. It is foolish for me either to envy her restfulness or to resent her for partaking of it with such contentment. At this point in our lives, my mother's challenge is to bear with grace the confinement of infirmity, while my anointed work is to be her caregiver. I must be careful not to grumble. God doesn't like that.

Scripture: "Do everything without complaining..." (Philippians 2:14).