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Life Must Go On

17 Dec

On June 21, 2018, my life…my world shifted. My mother passed away quietly in her sleep late in the evening of July 20th and was declared dead in the wee hours of July 21st. I will never forget the sound of her last breath. I will never forget the sight of her dead body being carried out of the house. After seven years of caring for her and watching Lewy Body Dementia ravage her body and her mind, my heart was stunned by the reality that she had died right before my eyes.

I’m still grieving the loss of her presence in my daily life. Being my mother’s caregiver is how I have defined myself for the last 7 years. Now I’m not just a motherless child, I am a parentless child…an orphan of sorts and I don’t like this role.

When my father died very suddenly in 1995, I was also stunned…as was the rest of the world. Mom was still with us. She marshaled us through some dark days. She carried us through learning how to live without Dad.

It appears that it is now the job of each member of my family to figure out how to live without our matriarch and patriarch. We will come through this stronger, wiser, and equipped to help others. God is with us and on our side. I have a lot to figure out. I must move forward. Life will go on. Life MUST go on. LET’S GO!

Being a Caregiver

20 Apr

It’s 3 am. Mom and I are awake. She’s got a lot on her mind and is engaging me and the other folks that she sees in the room in conversation intermittently tonight. As I sit here I realize that the journey of a caregiver is unique for each person. History and relationship with the person for whom you are providing care are factors. The caregivers own physical, emotional, and spiritual health are factors. Support of family and friends are factors. Financial health which includes income, health insurance, life insurance, longterm care insurance, savings, etc. to provide care, hire additional help, purchase equipment and other items are factors. Quality of the medical team and other caregivers and aids are factors. Additional priorities of the caregiver (work, family, school, etc.) are factors. Temperament of the caregiver and the one being cared for are factors. Physical fitness of the caregiver is a factor. Access to additional support and safe places for the caregiver and the one being cared for where they can be supported, heard, seen, speak their truths, process emotions, be rejuvenated and more are factors. Spiritual strength to move through the process, remain a healthy vessel to demonstrate love to the one being cared for and to one’s self as the caregiver are factors. Love, joy, peace, patience, kindness, goodness, faithfulness, gentleness, self-control, known as the fruit of the spirit, are factors. All of these things and more shape the journey. At the start though, it’s all about facing a situation and figuring out how you are going to get through it. Praying for all of us walking the path with it’s twists, turns, highs, lows, joys, pains, rewards, costs, good days and bad days, and more. Even now as I am closing this message my mother is smiling at me. She’s alive and I’m grateful and that’s all that matters in this moment. #latenightthoughts #preciousmomentswithmom #lordgivemestrengthtomorrow #sleeppatternsareinflux #ilovemymommy #alzheimers #lewybodydementia #caregiver #lifeofacaregiver

Mother’s Day Tribute #8

14 May

HAPPY MOTHER’S DAY!!!!

I celebrate my mother and honor her for all she has instilled in me. Mothers and daughters often go through rough years and we certainly did. Here we are at this stage of life where I get to care for her, love her, protect her, and guide her to her next phase of her journey. I am the daughter of Reverend Dr, Dalineta Hines. I am blessed to have been loved, nurtured and shaped by this incredible woman. Alzheimer’s has impacted her body, her mind, her life and our roles in each other’s lives. It has also given me the opportunity to love and experience my mother in new ways. I’m grateful that she gave me life. I am also honored that she made that life an incredible life. I will always love and treasure my mother!

her children call her blessed

Mother’s Day Tribute #7

13 May

My mother taught me to know, love, pursue and serve God. There is not a single aspect of my mother’s life and living that was not based on her spiritual foundation. Hospital administrator, wife, mother, friend, leader, team member, ministry partner, church member, teacher, advisor, mentor, student, and every other way Mom has shown up in the world has been built on her strong spiritual foundation. Mom and Dad started every day with reading Oswald Chambers’ “My Utmost for His Highest” and praying together…every single day. They ended every day with prayer. She never faces an issue alone, God is always with her. When singing around the house, she would sing hymns and spiritual songs. When celebrating accomplishments, God is glorified. When facing trials and tribulations, God is  called upon to strengthen and make a way. God and holiness are simply the air she breathes. Now that Alzheimer’s is ravaging her brain, God is still at the forefront. Her caregiver reads the bible with her and sings hymns with her. Late at night when Mom and I have our alone time, we sing hymns and spiritual songs, and I read My Utmost for His Highest to her. These are the things that bring her peace and joy. From the day I was born until this day, my mother has lived a life that makes God look good. I want to know God because of the way my mother lived and lives her life publicly and privately. I want to know the God that has come through for her time and time again. I want to know the God that is still with Mom know as she is on this journey through Alzheimer’s. I want to serve the God that fascinated me as mom read bible stories to me as a child. This Living God that permeated and still permeates every aspect of Mom’s life is the one I now pursue, love, serve, and take time to get to know deeper and more intimately. I am blessed to be my mother’s child and a child of God. I thank God for my mother and the life she has lived!

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Mother’s Day Tribute #5

11 May

My mother taught me to appreciate art, culture, traveling and etiquette. My mother made time for trips to museums, concerts, art exhibits, the theater, etc. She made sure that all of her children took piano lessons and whatever other instruments grabbed our attention. We were all in choirs at school and church. My brothers were boy scouts. My sister and I had bad allergies and that got us out of girl scouts pretty quickly. Dining out was always an adventure. Knowing how to pronounce everything on the menu was important. Knowing when to use each utensil, glass, plate, bowl, etc. was also important. Sitting properly, walking properly (I can still feel her knuckle running down my spine when I realize that I am slouching), speaking properly, dressing appropriately, being informed about world affairs, local politics, sports, and issues negatively impacting our community, knowing at least one language other than English (the Queen’s english vs American english is a topic for another day) all of these things were part of growing up in the Hines household. Mom made reading an adventure. Trips to the library were like trips to a fantasy land. I remember escaping into the world of whatever book I was reading. Reading with my mother was the BEST. She made every word pop off of the page. I could see the words not just hear them. We didn’t just use our imaginations to travel, we got in our car, a plane, a train, whatever it took to get around. My parents travelled extensively and made sure that we knew that the world was much bigger than our neighborhood. There was always something to see, learn, and experience. She consistently found ways to expand our knowledge and experience of the world and its people. I am very grateful for that.

The Hines and Evans Couples

Mom and Dad with Uncle Louis and Aunt Cokie Evans.

2017 Mother’s Day Tribute #3

9 May

My mother taught me that intelligence and resourcefulness are aspects of beauty. Now don’t get it twisted. Mom was a Saks 5th Avenue, Neiman-Marcus, Lord & Taylor shopping queen. She liked to dress well and look good. She also made it clear that all of that was meaningless if when you opened your mouth there was nothing. Beyond that she made it clear that intelligence was not something you hoard. Intelligence should be used to serve others and increase your ability to be a resource in any and all environments.  In talking about their days of courting, my parents consistently mentioned how large a role intelligence played in their attraction to each other.  The look in their eyes when they talked about it made it clear that intelligence still played a big role in their marriage. They knew that they could rely on each other’s intelligence and resourcefulness.

I grew up in that era where asking questions or not being able to answer a question often meant that one was about to spend some time with their head in the Encyclopedia Britannica (the actual books…no internet access back then). I remember doing research and preparing reports (written and/or oral/) on what I had learned. Once the report was shared with mom, she would often give me a big hug, a kiss, and then say, “That was beautiful, Miss Del!” Want to impress Mom? Be brilliant and look good doing it! Want to dazzle her? Apply what you had learned to help someone or to improve a system or process!

Mom - smiling mouth closed

We’ll See What the Lord Will Do

5 May

Whenever closing a conversation where the ultimate conclusion was yet to be determined, my mother was sure to say, “We’ll see what the Lord will do.” She said this so often that almost everyone who knows her ends up using this phrase from time to time. As we journey through the late stages of Alzheimer’s with Mom, I find myself saying it often.

I’m not sure how others move through this part of the journey but my family and I are fully leaning on God’s everlasting arms. We are doing our work and moving through these days knowing that ultimately, we will simply see what the Lord will do…and that’s the best and right thing.

Praying for all us on this journey…this winding road…this rollercoaster…this beast called Alzheimer’s.

You can make many plans, but the Lord's purpose will prevail

The Past, Present, and Future

27 Oct

past-present-and-future

Alzheimer’s is a tricky disease. My mother is fixated on moving forward. She has her eye on the future. She always has something she needs to do, somewhere she needs to go, and someone she needs to talk with, and things that people real to us both and real to her only need to be doing and saying.  I am the one clinging to the past, longing for what was, wanting her to join me in the past.  When I become aware of this conundrum, it is often driven by my neglect of our present circumstances showing up in ways that disturb, arrest, and/or piss me off.  Undone housework, unmanageable hair, missed appointments, calls left unreturned, tasks uncompleted or even not started at all, relationships showing the wear and tear of lack of atttention on my part, self-care being backburnered for so long that my body and mind are on the verge of a crisis snap me back into awareness that I must refocus…get back to the present.  As my mother’s caregiver, I am slowly learning that I cannot ignore the present. Today, now, this moment, I choose to come back to now. God will take care of us through it all. I can let go…it will be alright. For mom the past, future and present don’t exist separately.  For her they are all happening now.  That’s one of Alzheimer’s cooler tricks and I am doing my best to embrace that.

Be Blessed!

Go Ahead and Cry

9 Apr
J 802-31 tears Ann Marie Young, 25, cries as she grapples with depression brought on by a gunshot wound during a robbery that left her a paraplegic, unable to care for herself or her two young children. After Young tried to commit suicide three times and her mother could no longer meet her serious medical needs, she was moved to the Golden Age Home in Kingston, Jamaica, surrounded by residents who are decades older than her. The children now live with relatives. Food For The Poor staff photo by Benjamin Rusnak

photo by Benjamin Rusnak

The life of being a caregiver for someone you love who has an irreversible progressive degenerative disorder/disease comes with tears. There’s no getting around it.  I remember the day the doctor told me that Mom has Alzheimer’s. It was not a surprise but it was devastating. The memory of that moment still brings me to tears.  Every one of my mother’s doctor visits since that day has reduced me to tears as I describe was been happening between visits and mom is asked questions she can no longer answer. I cannot count the number of times that I have curled up on the sofa in a fetal position and cried myself to sleep, typically after getting mom safely in bed.  I usually tell no one about those moments. It’s not that I feel ashamed. It’s more that I feel like my emotions are way too heavy for anyone else to bear.  I made the choice to move in with mom when she had knee replacement surgery. I make the choice everyday to not walk out the door and never return. I make the choice everyday to assume the responsibilities and  receive the rewards of being Mom’s caregiver. I choose to not burden my family and friends with the weight of my emotions everyday.  There are times when I can’t hide it though. Moments when someone holds my hand too long, hugs me too closely, looks me in the eye too deeply, it all just comes pouring out.  Gratefully the person on the other side has always been strong enough to handle it. We, caregivers, need that safe, healthy emotional release. I know that I do. If I do not cry alone or with someone I trust, all of those emotions turn inward and build up. That’s where the trouble starts. I then try to find other ways to stuff the emotions down, mask them, or simply numb myself.  At this point you maybe thinking, “didn’t she just do a whole 3-part series post on Trusting God?” Why yes I did! I’m a work in progress. I certainly still have my struggles. There are also times that even after turning to God first, I still have tears and a sense of isolation that drives me to cry harder.   Do I think that crying fixes anything? YES. Crying fixes ME. Crying can fix YOU. Crying stops us from being emotionally detached or so overwhelmed that we cannot function and therefore are unable to execute our care giving duties. The trick is to not get stuck there.

Here’s another confession, I find that when I get myself together enough to make it to workout with my BNFIT family at 5 AM, I am better off physically, emotionally, and spiritually. I even get my morning devotions done earlier too. Find a way to take care of your body. Sweat! Sweat so hard that no one can even tell that you’re crying.  One of the phrases my trainer likes is “No one ever drowned in a pool of sweat.”  He’s intense but I need that level of intensity. Find what works for you. Go for a walk. Go for a run. Take a workout class. Go to the gym. Workout with a group. Workout with a personal trainer. Just do something! (I’m preaching to myself on this one!)

Now back to what I was saying,  if you find yourself unable to stop the tears, that’s a clear sign that you are emotionally overloaded and need to seek help. I am an advocate for therapy. Find a professional. Talk to your pastor or spiritual leader and get their advise on professionals they may recommend for you.  Tears should not be feared. Embrace your tears. When you are done, wipe your tears and continue being your fabulous self.  I can tell you from experience (last week in particular) that crying does not kill you. Go ahead and cry, my friend and then…smile.

Next up…We’re going to talk about a caregiver’s role as patient advocate

Let’s Talk About TRUST – The Closer

18 Mar

 

God-I-trust-you...

I could just keep talking about trusting God but let’s admit it. It’s time to be about the work of trusting God. It’s time to make that choice. It’s a choice that must be made every day. For me, it’s about declaring that trust every morning during my time with God as I start my day. Nothing else works for me. Saying I trust God today does not cover how I come to the table of worship tomorrow.  We have to choose God daily and declare that choice daily…well I do.

Today’s morning declaration was, “I am confident of this very thing, that He who has begun a good work in me will complete it until the day of Jesus Christ” based on Philippians 1:6. This declaration is an empty lie without trusting God. Today and everyday you, we, I have to make that choice to trust God with everything we’ve got. The work does not end there. We have to know God’s Word. We have to hear God’s voice. We have to submit to the Holy Spirit. We have to be Christ-like. We have to be servants and disciples of Christ. If we are going to trust God to be God we have to KNOW God.  To know God we must pursue God daily…when things are going well and when life smacks us in the face with brick.  This is not always an easy thing, but it is the right thing. One thing is for sure, we have to start with being honest about what is blocking us from trusting God. Tell your truth.  Take your truth to God. Let’s let our conversations with God grow from there. There is joy, peace, freedom and so much more on the other side of this.

Thanks for going on this journey with me. I hope it helps you in some way. It has certainly helped me.