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

Friday, July 8, 2016

God's Steadfast Love

After twelve years of taking care of Mom in our home we will begin the work of transition to nursing home care within the next few months.  I remember a line from a favorite movie that I'll probably misquote but the thought is intact:  People say change is a good thing, but all they really mean is that something you very much did not want to happen, has happened.  

I did not want to ever have to go through the process of putting Mom in a nursing home. After the years of challenges my husband and I have accepted in providing care to Mom in our home, I felt I'd paid my caregiving dues. I assumed the Lord would not make me entrust Mom to the care of others when He had so obviously assigned me the responsibility of taking care of her.  But now, here we are, feeling the Lord's unmistakable nudge to move forward to preparing Mom for nursing home care (a specific set of steps have unfolded for this process, and I will share these here in the months to come in hopes that others can be helped). 

As a first step to this process we are looking for a new home for my mother's cat. Mom has always seemed mildly allergic to Kitty, but the benefits of companionship have outweighed the concerns about a possible allergy. However, the cold Mom has suffered this past week has led to alarming bouts of coughing and wheezing.  What if this virus has sensitized her even more to allergens? And so Kitty has been sent to a friend's house for a week, and after that we'll try to place her in a home where her experience as an Alzheimer Care Cat can bless others.  

I am unexpectedly bereft over Kitty's absence.  Those of you who read this blog regularly know there has been no love lost between Kitty and me, but I feel her absence keenly.  I've fed, brushed, transported to the vet, and changed the litter in the box for this cat for her entire life.  I have taken care of her, and caregiving leads to attachments whether one intends it or not!  Her leavetaking causes a minor bout of grief-fueled heartache that is a harbinger of the much greater grief I will feel when my mom is no longer here.  

This morning, recovering from my own cold, tired from long bouts of middle-of-the-night caregiving, discouraged, and feeling alone, I came to the Lord.  The words "My soul is overwhelmed with sorrow," came to mind. I thought the phrase was from a Psalm, but when I looked it up I found those words were uttered by Jesus at Gethsemane, when no one would stay awake and watch with Him, and He was headed to the Cross.  And I realized that on my behalf He bore what I will never have to experience; I don’t have to endure separation from Father God.  With Christ as my bridge, that connection will hold.  God is with me. 
And then I read the Biblegateway verse of the day, Psalm 138:2:  

I bow down toward your holy temple and give thanks to your name for your steadfast love and your faithfulness, for you have exalted above all things your name and your word.

Reading these words gives me a feeling somewhat akin to stepping into a warm bath when muscles are aching and flesh feels chilled; I breathe in a deep sigh of relief.  God's love is steadfast.  He is faithful.  We are not alone.  

I can't bear the grief of putting Mom in a nursing home, but the Lord will bear it with me.  I'll move forward in obedience, and take my comfort from the knowledge that I don't have to bear this sorrow alone.  

Saturday, June 25, 2016

Caregivers Make Bad Patients

When I am sick, really sick, I go into a strange mental state.  It's as though physical suffering precludes clear thinking, and I stop making sound judgments either about things I might do to help myself (go to the doctor, rest) or what others might do to help me.  It is only when an ordeal of illness is in the past that I realize what I ought to have done. And I'm afraid that at that point, I also become aware of what others ought to have done, and in a a post-illness state of vexation I let them know about it!

This time it was a horrid cold that turned into a throat infection and chronic coughing that just devastated my whole system.  "Don't do your outside chores Mom; you shouldn't get overheated," said my daughter.

"Oh but it is my joy to water my outdoor plants, and it is the only exercise I get," I replied.

"You need to go to the doctor," said my husband.

"Oh, let's give it another day, I don't feel too badly."

They both gave way to me because I'm the caregiver. I'm the one who analyzes my loved ones' needs and writes prescriptions, so to speak. If my daughter is sick she goes to the doctor if I think she needs to do so. When my mother has a toothache or needs a flu shot, I'm the one who makes the appointments. And my husband now receives yearly physicals as a result of my nagging encouragement. My loved ones are used to giving way to me because they know I care, that I have a wider medical knowledge base than they, and...I'm kind of pushy.  But it's all from love!  And it is my role in life. I am a caregiver and a nurturer.

And I am a bad patient.

I don't feel comfortable if others "do" for me, I'm only happy if I am doing for others. Thus I do not possess a grace my mother has developed over her years of being an Alzheimer patient; she knows how to be a care recipient. By contrast, I do not know how to ask others to do things for me, I don't take directions well, and I push others away when I'm sick rather than making it clear what I need.  When it is all over, I realize how sick I've been and how it would've been nice to have had a caregiver, and I have an unfortunate tendency to use the clear vision of hindsight to tell my loved ones how they should have helped me (even if they were rebuffed)!

I hope to do better. Caregiver syndrome at it's worse creates people who will not take vacations because no one can do without them, can't receive ministry from others because it just doesn't feel right not to be "doing" for them rather than the other way around, and then, when burdens become too heavy, are prone to resentment.  I think...I know, I'm suffering from caregiver syndrome.

I'm too tired this evening to think through some strategies for change, but I do know change is needed.  I've read that those who will not take time to vacation eventually will have to take time to be ill.  I need to heed that wisdom.

Meantime, I'll work on being better about considering suggestions from my husband and daughter when I'm sick.  I would have gotten better quicker this time around if I had followed their directions. 

Saturday, June 18, 2016

Happy Place

 As caring for Mom has kept me closer to home, I've felt grateful to have discovered joy in growing a few flowers and creating fairy gardens around my yard. It has been so much fun to create these little worlds, and not very time consuming since I--unlike the virtuosos who post their creations on Pinterest--do not build my own scenery.  But I've had a lot of fun, and when my grandkids visit they love running to find each new addition.  I highly recommend a hobby--be it knitting, quilting, crafting, etc.--for all weary caregivers.  We need that happy place!

Yes, I drilled holes in the bottom of my bird bath to create this little world.  Zoom in to see hedgehogs, mushrooms, and a boat with a leaf sail that is anchored at the little wooden dock.  

Welcome to the Dew Drop Inn.  I'm particularly fond of the little blue sign that says, "This is where the magic begins!"

The Disney scene (upper right) was my first fairy garden. Encouraged by my grandsons' enthusiastic reactions, I've continued to add to the menagerie.  

Friday, June 10, 2016

Migraine, Bad Behavior, and Alzheimer Insights

I was walking home following an after dinner, mile-long stroll. The weather was hot and humid, and about a quarter mile from home I began to experience a migraine aura. My migraines are not incapacitating;  I don't suffer throbbing, intense pain.  But my perceptions go off-kilter, I sometimes feel nausea, and, about 30 minutes after the aura first appears, my head aches. The ideal response is to take ibuprofen immediately and then relax in a darkened room as the first symptoms appear, but this time I needed to walk a distance in heat and bright light that, in my migraine-induced perception, stretched interminably ahead. By the time I reached home I felt very sick indeed.

As I was in the grip of more severe than usual migraine symptoms, I lost all semblance of a Christian determination to walk in the love that covers a multitude of sins. It also became evident that I'd definitely been keeping a record of wrongs (and you'll remember, 1 Corinthians 13 says love does not do this). The least grievance I suffered from others unleashed a torrent of tearful, outraged words. 

It isn't that my loved ones were completely innocent of any missteps.  But, in pain and feeling vulnerable, I lost the ability to be wronged in a way that honors the Lord.

I was trying to explain to a friend what had happened to me, and heard myself say, "It was a little like having Alzheimer's."

Bingo!  My mother's bad behavior, explained.

My incredulity over Mom's anger toward me doesn't come from a conviction of my own virtue.  I know I often emit an aura of pained longsuffering rather than loving empathy, and wouldn't that be difficult to bear?  It's just that Mom gets so spitefully, vindictively angry about any wrong I commit, large or small.  This is so inconsistent with the love she used to have for me that I can't understand it. 

She acts very much like I acted toward my loved ones today.

The latest research says that migraines actually cause changes in the brain.  During a migraine one's perceptions are canted, and a term has been coined, "Migraine Brain." Things that go wrong in the brain can cause us to respond inaccurately, inappropriately, and yes, sinfully toward others.

It's hard to be the one who has to depend on the abilities of others to love and forgive.  Today I was that person, the one who flung hurtful words that found their marks in the precious hearts of those within range of my vindictive anger and spiteful words.  It's unnerving that a physical ill can cause my commitment to loving as I've been loved and forgiving as I've been forgiven to go out the window, but it has given me insight into my mother's behaviors.

Lord, forgive me, and help others forgive me. I forgive my mother.  Thank You for Your covering mercy and grace even when we sin, and thank You for healing the wounds we receive and inflict.

As I was recovering this afternoon, I came upon a painting of Christ sitting next to a girl who has her hands clutched in front of her and her head bowed. He has a compassionate look on His face, and His hand is stretched out toward her. This ministered to my heart; the Lord knows, He understands, He has compassion even when our wretched behavior has alienated those from whom we long for acceptance and nurture. He does not turn His back on us. He hasn't turned away from my mother.  And He won't turn away from you or me.


The painting that touched my heart was called The Master's Touch, by Greg Olsen.  You can see it here.  If you visit this page, be sure to read the poem Olsen wrote to go with this painting. It makes an analogy between a student who would like to drop out when responsibilities overwhelm and how all of us would like to drop out of life when our burdens become heavy. It offers sweet solace for weary caregivers who would definitely like to drop out!