Surprised by Grief

Life transitions can be likened to a road that must be traveled. If we sit down at the side of the road in order to avoid the grief of changing views, we won't get anywhere!

I have been surprised by the grief I've had to traverse in the wake of placing my mom in nursing home care. So long as I was busy with caregiving I didn’t have time or energy to face the sorrow of the loss of my mother as she once was. Alzheimer’s had already taken my mother from me, but I still had the daily, broken solace of meeting her needs and demands of me. Our interactions had changed, but there was still a relationship: that of caregiver and patient. The nursing home placement brought this phase of my relationship with my mother to an end. It was an abrupt change similar to that of a death, and in the release from constant responsibility to meet her needs, I have been confronted with the cumulative pain of 12 years of watching my mother fade from sight. The monitor on my bedside table no longer channels my mother’s voice because her room is empty; there is only silence. 

It is difficult to come wholeheartedly to the Lord when we are in grief. This morning I remembered the chapter entitled “Facing the Grief,” in My Mom Has Alzheimer’s. I wrote of our human dislike of change, and of the difficulty of transitions in our relationships. I used as an example my emotions when my daughter married:

…for a time my daughter’s leave-taking left a terrible feeling of emptiness in my life. I clutched that emptiness to my heart and tried to rise above it on my own, because I had fallen to the deception that to come to the Lord would necessitate my facing the whole of my grief and pain. I had no desire to hurt more than I hurt already. I finally recognized the fallacy of the idea that God would require my heart to be ripped open and the contents emptied in order for me to gain access to Him. This lie was the enemy’s attempt to keep me from the solace that was rightfully mine in the Lord.

These days the lock my key fits perfectly is that of Alzheimer caregiver, but this role is also temporary. I pray that when my job as my mother’s caregiver comes to an end that I will bring my heavy burden of grief to the Lord quickly and willingly. He has promised that those who mourn shall be comforted, and I pray to avail myself of that comfort. My Mom Has Alzheimer’s: Inspiration and Help for Caregivers, Bridge-Logos Foundation, 2009, p. 28. 

 

The enemy offers us alternate sources of comfort that cannot satisfy when we are suffering from grief.  I’m praying today to “bring my heavy burden of grief to the Lord quickly and willingly.”  

Recommended hymn: Wonderful, Merciful Savior as sung by Selah

Transition to Nursing Home Care--Exhausting!

Today marks the beginning of Mom's fourth week in nursing home care. I am surprised by how difficult this transition has been; I thought the grief of parting would be balanced by the vast relief of liberation from being constantly on call. However, my time commitment to Mom's needs hasn't lessened during this transition time. The time I spend at the nursing home is balanced by a new freedom from the physical demands of caregiving, but another unwelcome surprise has been a sense of grief. Ministering to someone as I have ministered to my mother engenders a special kind of love.  We might say that it is impossible to give so much without caring deeply: thus the term "caregiver."  In my desperation to be freed of the burdens of caregiving, I underestimated how I would miss the blessings of giving so much. 

I was surprised by the steep learning curve of acclimating myself to Mom's new environment. As the person who knows my mother best, it has been my responsibility to learn how to communicate clearly with nursing home staff in an inoffensive way (though being inoffensive can't be my primary goal). I didn't know this would be so difficult. The hierarchy of authority among nursing home administration and staff wasn't immediately apparent to me (why didn't I just ask?). The administrators in the front offices were apparent, but there were bewildering numbers of aides, nurses, laundry workers, and kitchen attendants. And this is such a small nursing home; I can't imagine how much more challenging it would be to learn my way around a larger facility.

This morning's devotion time yielded a clear message for me: Rest! As I sank to the welcoming cushions of my old office couch awhile ago, I was reminded of how my mother--who in her prime moved quickly and worked hard--used to say, "Whew! I didn't know I was so tired until I sat down!"  Until I quieted myself before the Lord and sought His directive today, I had no idea how depleted I felt.

When we stay busy in order to distract attention from grief, we rob ourselves of the solace of silence and rest. The awareness of God's healing presence in His ordained gift of rest can be masked by too much noise and busy-ness.

  For God alone my soul waits in silence; from him comes my salvation.

Psalm 62:1 ESV

Truly my soul finds rest in God;
    my salvation comes from him.

Psalm 62:1 NIV

Here is a summary of today's recommendations for caregivers who are transitioning their loved ones to nursing home care: 

1)  Your time commitment to your loved one may temporarily increase during the first weeks of nursing home care.  Plan for this.  

2)  Your focus needs to be your loved one's well-being rather than an attempt to be inoffensive to nursing home staff--but try to be inoffensive just the same!  Maintaining a balance between being a good advocate for your loved one and not becoming a pain to his/her new caregivers requires much prayer.

3)  Don't run away from the grief this transition will bring, or fill your days with tasks that bury the Lord's offer of solace with a weight of busy-ness. Find your healing in His arms as you quiet yourself before Him.   

4) At the nursing home, ask this simple question, "Which person should I talk with when I have questions or input about caregiving issues?" I try to visit with the attendant who is charge of Mom's care before I take my concern to the nurse, and I visit with the nurse before I look for an administrator. This provides the opportunity for a problem to be corrected without triggering a correction or reprimand from a superior.

5) Larger nursing homes may have photos and names of staff on a website. This would facilitate learning names, which is important. You need to be able to greet these hard-working folks by name, it's just good manners, and respectful t'boot.  It also sends a clear message that you are committed to partnering in your loved one's care, and makes them feel pleased (that you remember them), but also aware that you know exactly who they are should you need to visit with them about a caregiving issue.  This is an important part of advocacy for your loved one. 

    6)  Be kind to these underpaid, compassionate people who perform the most difficult of tasks for so many people each day.  Nursing home workers face burnout as they form emotional connections with terminal patients. They will cry with you when your loved one passes away, and they will cry with the next patient's family, and the one after that.  Pray for them.

First Two Weeks of Nursing Home Care

Our pastor's wife sent this meme to encourage me the week we sent Mom to nursing home care. 

We have survived nearly two weeks of transitioning my mother to nursing home care.  

This has all been more difficult than I anticipated. Mom's room is empty for the first time in 12 years, and the house feels unfamiliar and silent. I have had to be stern against emotions that tell me I have abandoned her; the inaccurate emotion that attacks is  that of a mother who has abandoned her needy child. All of this, together with the inevitable challenges of helping Mom's new caregivers to understand her needs, has been overwhelming. I've had to spend more time at the nursing home than I would have predicted would be necessary. If I had not prayed through to peace regarding this decision ahead of time, I would have given way to emotions that told me we had made a terrible mistake.

I compiled a list of directives from myself, to myself during this time as I struggled to think clearly despite regular onslaughts of grief-driven emotion.  I've shared the list below, and hope others will be helped:

First Week of Nursing Home Care 

--Show up every day, at different times of day. If your loved one's hair is uncombed, comb it; if his/her clothing is mussed, straighten and freshen. If you have been the primary caregiver and have the skills to do so safely, toilet your loved one and check his/her cleanliness. 

--Don't apologize for your loved one's behaviors. Acknowledge the caregiving challenges, but don't make it seem as though you endorse shortcuts or omissions in caregiving practices just because your loved one protests or is difficult. As my cousin-the-social-worker said, "Don't put this on your mom, Linda. They are the professionals. She is the one who has sustained brain damage from Alzheimer's. They deal with things like this on a daily basis."

--If you notice some serious lapses in caregiving, don't respond with anger or righteous indignation.  The staff is learning to know your loved one's needs and capabilities. Be patient and kind, but also be persistent.  Pray, and don't leave until you feel confident the issue has been addressed. 

--Make an attempt to learn the names of every person who provides care to your loved one. Visit with the night staff.  Make it a point to meet everyone who interacts with your loved one.   

--While you are at it, learn the names of residents and greet them warmly as you walk down the hallway or stop by the fellowship room. This takes next to no time and your acknowledgment brightens their days.

--Be open about your grieving process in releasing your loved one to the care of others, but balance this with supportive words and actions toward the nursing home administration and staff (a thank you note and home-baked treats are always appreciated).  

--Pray for wisdom about which issues are important. It isn't necessary that my mother's new caregivers comb Mom's hair in the same style that I did, but it is important that they don't ask her to sit upright for long periods because she has a compression fracture in her spine from osteoporosis.

--If your loved one has a personality change, or exhibits behaviors you've not seen before, get to the bottom of the issue. Check to be certain there have been no errors in administration of medication. 

--There are two errors to make in advocating for your loved one: the first is to be too willing to give in when you sense something is wrong, the second is to jut your jaw and determine to examine every caregiving procedure to be certain they meet your specifications. Strive for a happy medium. Better yet, pray for wisdom. 

Chocolate and Sympathy...Maybe Just Chocolate!

We placed my mother in nursing home care eleven days ago. I have been fighting my way through a flood of emotions of such varying levels of depth and strength that I've had no choice but to abide in the Lord moment by moment for guidance and help.  I'm reminded of the story in which a man says, in despair, "There's nothing left to do but to pray."

His comrade is a person of greater faith and replies with gentle irony, "Oh my, so it has come to that!" And of course, in this place of complete reliance on God's provision I have indeed found that the everlasting arms do not fail. When I am too overwhelmed to hold tight to the Lord, He holds on to me. 

I'm still too immersed in a plethora of feelings to sort them out in a way that might be helpful to anyone else, but I do want to say I've felt pangs of regret borne of empathy for the full time caregivers who, still in the midst of bearing a heavy burden of full time caregiving, may feel they have lost my comradeship in their difficult journeys. There was a lady named Jenny who used to post comments occasionally at this blog, and several others for whom I prayed. I also know from looking at the stats page that there are a number of additional readers who have not left comments, but may have been helped by the guidance the Lord has provided Mom and me along these past 12 years as caregiver and patient.

Of course, those of you who have placed loved ones into nursing home care know that the caregiving role doesn't stop. I'm no longer in charge of changing my mom's bed each morning and I've released the responsibility for her personal hygiene to others, but my responsibility to her hasn't ended; I'll still be writing about caregiving. So that's the first thing I wanted to say; if you read this blog regularly and have gained comfort and strength, know that I'm still here and will still be sharing the encouragement that our Lord provides to caregivers. And, I'll go to work labeling past posts so you will be able to more quickly find one that meets your current need.

The other insight I need to share is directed toward those who have chosen nursing home care for loved ones who are in or approaching the later stages of dementia. It is a difficult truth but also oddly liberating to recognize that because of the confines of the disease, our late stage dementia patients don't pine for us when they are separated from us, not in the way we might fear. Because our roles have been reversed, I was afraid my mother would miss me as a child longs for her parent, or even in the way that a mother misses her absent adult child. However, Mom doesn't realize she has been moved to a nursing home, and assumes I'm nearby even when I'm out of her line of sight. And when she recognizes my absence, she isn't sad so much as she is angry in the way that an employer is displeased with an employee who has shirked assigned duties. Her anger is all the more virulent because she perceives herself as suffering because of my negligence. Mom is more mad than sad, and in a way this is easier to deal with than if she was suffering from homesickness and longed for the emotional support she once received from me.

And so one of my tasks now is to avoid projecting my emotions of grief and loss upon my mother when I visit her. She doesn't need my soulful gaze, my tears, or my professions of love and devotion. She would much prefer to have the chocolate bar I've tucked in my purse as a special treat.

My prayers continue for those of you who have traveled this caregiving road with me.  You've been my comrades in arms and I'm thankful and blessed by the encouragement you've provided along the way.