Thursday, August 25, 2016

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.”  

Monday, August 22, 2016

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 lowly 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.

Sunday, August 14, 2016

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. 

Thursday, August 11, 2016

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.  

Friday, July 29, 2016

Transitions and Changing Perspectives

I don't have a sister, but I do have a cousin who is just a couple of years younger than me. We share memories of childhood times and places that I have in common with no one else on the planet. Sister in Christ, trained counselor, social worker, and heart friend; she is precious to me. Her name is Pam.

Pam is used to fielding my multi-page emails; I often use her as a sounding board. Gathering my thoughts for her grants me perspective I would not have gained otherwise. In response, she sometimes shares valuable insights, but she mostly just expresses her love. Regardless of her response, I'm always blessed.

I'm going to share with you my latest missive to Pam, because transition times are rough, and I think others might relate to my struggles as I prepare to place my mother into nursing home care after twelve years of taking care of her in our home. My emotions are volatile, my physical body is exhausted, and I'm suffering mood swings. Yesterday morning I was honestly convinced the nursing home decision was a huge mistake, and felt panic-stricken.  This evening I am calm and am actually looking forward to a lightening of my responsibilities to Mom.   

Here is my latest email to my cousin:
Dear Pam,

I'm sending you this email because I know what's going to happen. As soon as I place Mom in the nursing home, I will give myself permission to grieve. I will then lapse into an "oh my poor dear mother what have I done to her" state of mind. If, at that point, I send you a sobbing email, you need to remind me of how grueling taking care of her has become. Remind me that I obeyed the Lord as to the timing of her nursing home placement, and that, while it is okay to grieve the mother that I've lost, that it would not have been okay to have continued to keep her here in our home at the cost of the health of my physical body and of my marriage.

While packing Mom's things, I came upon a transcript of Dad's funeral. The pastor had used a lengthy quote from me extolling my mother's virtues. "She is the kind of person who will never let anyone else do anything for her," I had said. "If you try to get so much as your own glass of water, she will say oh no no you sit there I'll get that for you." This was an excellent reminder for me that it is the brain damage and the disease process that causes these current behaviors. It's just horrible how we view the past through the lens of the present and begin to think that she has always been this way. She has not.

But I've also heard that once the journey is done, that the good memories come back. And then we view the disease process in light of the good memories we have of that person. This is lovely but… at that point I'll be at risk of self-castigation and that's where you come in and say, "No, no, no; remember how difficult she became!"

I know the thing to remember is that no matter how I'm feeling in the moment, the Lord is the author of this path we are on. I know He will take care of my beloved mama as she is placed into the care of others.  I pray God grants the nursing home staff compassion and understanding of her, and that she is protected from the irritability that comes from feeling confused.

It is so difficult not to worry about other people bathing her and helping her in the bathroom. Pray with me about her sense of safety and modesty.  Pray also that I'm given wisdom about how to talk with Mom about nursing home care, and how much time to spend at the there with her during her transition time. I know I must keep focused on the Lord's guidance and Mom's needs, and just turn a blind eye and deaf ear to any real or perceived judgments.

This is so hard. Thanks for being there, and thank you for praying for us.

Love, Linda

Tuesday, July 19, 2016

Preparation for Nursing Home Care

As promised, here is a list of the steps we've followed thus far as we prepare my mom, who has Alzheimer's, for nursing home care. I've made the list brief so as not to muddy the waters with details from our situation, which undoubtedly differs from yours. Find experts and talk with them; your Area Council on Aging and the administrator of the nursing home you've chosen for your loved one are good starting points. It is best to find an attorney who is an elder law expert to create the necessary documents:

1.  If the patient has dementia or may become unable to make decisions for him/herself, a trusted relative/friend needs to obtain Durable Power of Attorney for health care and financial needs on behalf of the patient.
2.  Living Will and Do Not Resuscitate documents if desired
3.  Personal Care Agreement (Advance Contract)--if a family member will be paid to provide care, you need a document that delineates the services that will be provided, and may protect the salary paid from a recapture of funds if the patient draws Medicaid.
4.  Calculate if and when you will need to apply for Medicaid.
5.  Veterans' benefits--If your loved one is a veteran or a spouse of a veteran, find your local Veteran's Administration representative to check eligibility for benefits.
6. Pre-assessment screening--In Kansas, this is referred to as a "care assessment;" I was told other states call it by a different name; it is a federally mandated pre-assessment screening and resident review (PASSR) that is required prior to nursing home placement. Nursing homes are required by law to have this form on file.
7. Dental and physical evaluations and necessary treatments.
8. Consider an appointment for your loved one with the facility's Medical Director to help him/her get to know your patient and medications
9. Prescriptions for all medications in their original containers
10. Communicate with nursing home staff--again, and again.  This is SO important. Help them to understand your patient's needs, habits, and daily routine to provide the smoothest possible transition.

As we move along in this process I'll add to this list. Of course this is not meant to be a guideline for anyone else--find the professionals you need to guide you through the process--but I hope this info can provide a helpful starting point.  Prayers are appreciated as we prepare my sweet Mom for nursing home placement. 

Saturday, July 16, 2016

The Lord, Our Help

I'd watered some plants with this little pitcher, set it back in place still half full, and then accidentally knocked it over as I turned away.

My mother often asks for help from the Lord. Her requests range from an honest, "Dear Jesus please be my help," to a vexed "Lord help me" when she's under duress.

Mom has sprained a muscle in her upper back, and it causes her pain. This morning I gave her a back rub and she enjoyed the comfort of my ministrations, as evidenced by her little sounds of happy relief. However, even as she relaxed her tense muscles she said, "Lord Jesus, I would appreciate any help at all that you could give me."

Later I was on my knees helping her put on her shoes when she prayed aloud, "Lord if you could send me some help I'd sure be grateful."

I always have to repress my urge to reply, "What am I, chopped liver???"  (Wikipedia says that chopped liver was once served exclusively as a side dish, and tended to be overlooked; thus the origin of the phrase).

We are making wrenchingly emotional decisions on my mother's behalf as we work to prepare her for nursing home care, and of late I've emerged from my devotion time each morning still in a "Lord help me" frame of mind. Mom's obliviousness to the ways the Lord helps her through me is due to her Alzheimer's disease, but I wonder what I might use as an excuse?

This morning, though, I had a change of heart. Fresh from my mother's lack of awareness of my efforts on her behalf, it occurred to me that I treat God in the same way. And so I prayed, "Lord, open my eyes to the ways you help me."

A little while later I knocked over a pitcher that was half full of water. A thick, white hand towel just happened to be on the table next to the pitcher, and I grabbed it and easily cleaned up the spill before the flow reached the table's edge. I had cleaned up almost all of the water before the realization dawned: I'd been helped! One might even say the Lord knew I was going to need that towel and provided for me ahead of time. So before I cleaned the last little puddle, I snapped the photo above. I was able to stop myself before I uttered a resigned "Lord help me," and instead I prayed, "Lord, thank you for this towel!"

An expectation of the Lord's present, practical help is a marker of faith in His ability to supply all our needs.  Sometimes it isn't our circumstances that need changed, but our perspectives.  If we look for the ways God has helped us, we will find them, because God is indeed our help.

Father, please open our eyes to Your provision. Thank You for being our help!

We wait in hope for the Lord;
    he is our help and our shield.

In him our hearts rejoice,

    for we trust in his holy name.

May your unfailing love be with us, Lord,

    even as we put our hope in you.
Psalm 33:20-22