Tag Archives: AlzheimersReadingRoom

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!

Never Give Up. God Is With You.

15 Jan

It’s been a rough 72 hours. For me writing is therapeutic and allows me to step back and examine circumstances in a way that often leads me to answers and makes me get out of the way and let God be God. The most exhausting days are the ones where I must combat an issue that I don’t understand and seems to have no answer. The process looks something like this when I am dealing with an issue re. my mother’s health and wellbeing. For me prayer is not a last step, but a first and a continuous one. Talking with nurses and doctors who have no answers is frustrating. Searching the internet and finding 309,497,832,754 different solutions that make no sense or are inapplicable to someone in Mom’s condition is frustrating. Getting no sleep overnight night after night is exhausting. It is at these times that I think of the millions of caregivers who are going through similar experiences who feel alone, abandoned, isolated, and hopeless and then I feel God’s presence most. I become thankful for my circle. My understanding deepens of Dad repeatedly saying, “I am alive and grateful” and Mom repeatedly saying, “We’ll see what the Lord will do”.  I am filled with gratitude in the midst of the situation and reminded that God is bigger than anything I experience. That alone is enough to keep me going. I pray that God fills my fellow caregivers with wisdom, strength, support, the right people, the right information, and boldness to address whatever the day brings. I say this pray for all of us. God is with us and we must never give up. I usually follow this up with journaling in some form and then evaluating what I have written and searching for an insight that gives me what I need to move forward. Some circumstances require that I go through this cycle repeatedly and that’s OK. The thing that often plays over and over in my head throughout this process, Never Give Up. God is with me. As a caregiver, this is fundamental to my ability to keep going when I’m exhausted, overwhelmed, scared, confused, or whatever…and there are a lot of “whatever” moments!

NEVER GIVE UP. GOD IS WITH YOU! I pray that this also helps someone get through whatever life is throwing at them.

Sidenote: As I write this, my mother has had a much needed break from coughing and is sleeping. YAY!!!

How Do You Keep The Music Playing…

4 Mar

I must ask you to stick with me on this one. It’s a bit of a winding road.

cropped-music-is-love

Music has always played a major role in my life and the life of my family. My memories of my childhood are full of music. Lately, I have been enjoying vivid memories of the songs my parents sang to me as lullabies. I am the youngest of 4 children. My older siblings were all involved in music. Someone was always learning a song, a solo, an audition piece, practicing for band rehearsal, choir rehearsal, ensemble rehearsal, piano lessons, or just jamming some 8-track, 45, LP, or tape. Mom was preparing music for Sunday morning worship. Dad was singing some hymn that was in his heart. I was just singing, singing, singing. I loved singing more than talking and that’s saying a lot because I LOVED to talk. I had a terrible stutter as a child. I had to attend speech therapy sessions in elementary school. I had to learn to slow my mind down so that my mouth could catch up. Singing is what my therapist and parents used to help me learn to slow my thoughts down. Stuttering never got in the way of singing. I could close my eyes, see the beautiful colors and patterns and just siiiiiiiinnnnnnnggggg my little heart out. Another trick was that my father would put his hand on my chest and tell me to breathe and then we’d sing together. Dad had a great big tenor voice. I learned to remember that feeling when I would get frustrated or stuck on a word. To this day, putting my hand on my chest forces me to breathe deeply. Dad would often have me read something to him, slowly. He had me convinced that I was reading slowly because he needed to hear it slowly. My mother would gently put one hand on my forehead and her other on my back. That would make me stop, breathe, think and try again. Mom’s trick was to have me read something from her medical journals. That forced me to slow down because I had to sound out all of those complicated medical words. Now I just put my hand on my forehead when I need to stop, breathe, think and try again. My brother, David, would hold me and sing to me or read to me when I got angry or upset. Music and reading were my safe places. My family made them so. My sister, Charmaine, who was my arch enemy in childhood, was also one of my favorite singers. My brother, Milton, my other childhood enemy, could sing like Stevie Wonder and I loved it. I tried not to let it show but I think they both knew that I LOVED to hear them sing.

My mother made everything she sang sound sweet. She was THE alto….one of those people simply born to sing alto! Hearing her sing in the kitchen was one of my joys in life. Even way back then, we connected through music in ways that needed no words.

People would come to our house to practice their parts and solos with my mother during her years of directing the Sanctuary Choir and serving as the Minister of Music at church. Seeing my mother’s beautiful smile when they sang correctly was everyone’s goal (that arched eyebrow when the part wasn’t right was to be avoided at all costs). One thing she knew for sure. I was going to know my part and be able to tell her who was in my section and not singing correctly. As the youngest child, being a snitch was sort of an art form for me. LOL. My mother and I did a lot of talking. There was a lot to learn. She taught me how to cook…and especially how to cook for Dad. She taught me how to assist Dad and her in their careers and the work they did in partnership. She taught me how to be a lady and a woman. She taught me how to read, write, and edit with an eye for detail and thirst for depth. She taught me how to be a woman in a leadership role especially when I was the only woman and/or the only person of color in the room. She taught me about the power of words and the need to tread lightly at times…never as a sign of weakness but as a sign of strength, wisdom, maturity and submission to God.

Here we are at 2017 and my mother is slipping away from me and I’m grasping at straws to hold on to her.  The woman whose counsel I depended on heavily can no longer have a meaningful conversation with me. The woman whose dry wit could make me laugh hard is now difficult for me to understand. I find myself approaching conversations with her as I did with my nieces, nephews, and godchildren when they were little. My mother’s facial expressions let me know that in her mind she makes perfect sense, so I do my best to figure it out. She still makes me laugh. At times she gives me that look that lets me know that she no more understands what she is saying than I do. She also has her moments of clarity when she’ll hit me with one of her witty zingers. I give her the side-eye and we both giggle. My mother, a brilliant, deeply spiritual, witty woman with a vocabulary that often sent me running to the Oxford Dictionary (some of the words could not be found in Webster’s dictionary) is slipping away. That ferocious insatiable beast called Alzheimer’s is annihilating her beautiful mind. We are now 5 years into her diagnosis and the years are taking their toll. Since words are difficult for us, we share music…often. We especially share music in the still of the wee hours, when sleep escapes both of us and she calls out for her mother. We hum, listen to music, connect in ways that do not require either of us to try to understand the other. We simply share our love of the vibrations and power of music. I want to keep the music playing. I want to keep connecting. I need to keep the music playing. As a child I learned to turn to music when words were difficult for me to utter. Now I turn to music as an adult as words are becoming difficult for my mother to utter. Music…it’s been there for me my whole life and I pray that the music never ends.

This song is about two lovers but with the change of just a few words, it’s applicable to my relationship with my mother. This may seem weird to some, but it’s perfect for Mom and me.

How do you keep the music playing?

How do you make it last?
How do you keep the song from fading
too fast?

How do you lose yourself to someone
and never lose your way?
How do you not run out of new things
to say?

And since you know we’re always changing
How can it be the same?

And tell me how year after year
You’re sure your heart won’t fall apart
Each time you hear her name?

I know the way I feel for you is now or never
The more I love, the more that I’m afraid
That in your eyes I may not see forever, forever

If we can be the best of family 
Yet be the best of friends
If we can try with every day to make it better as it grows
With any luck than I suppose
The music never ends

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

This Alzheimer’s Journey

13 May

winding mountain path

It has been way too long since my last post. I have let the stresses of being a caregiver get the best of me lately. I haven’t been blogging. I’ve been working out less often. I’ve been eating poorly. I haven’t been sleeping well. My moods have been running amok. It’s time to pull it in.  This is going to be a long one and will be all over the place. Just hold on and go for the ride… 🙂

There is this sense that one should be quiet about Alzheimer’s. There is a stigma or shame that many attach to Alzheimer’s. It is very reminiscent of how we use to whisper the word “cancer” back in the day or just not speak the words “AIDS” or “HIV” (many conversations about AIDS and HIV are still laced with homophobia and judgement but we’ll talk about that in another post).  I REJECT ALL OF THAT COMPLETELY! I refuse to add the weight of  shame and silence to an already overwhelming journey though Alzheimer’s. My mother has a disease that impacts her and everyone involved in her life. There is nothing shameful about this. I am grateful for family and friends who still answer my calls, reply to my texts, wipe my tears, and understand when my silence or harsh words are really a cry for help. I am even grateful for those who don’t really get it, but hang in there with me anyway. Mostly, I am grateful for those who hold me accountable for my words, actions, silence, lack of action and push me to do better, be better, to operate at a higher level and live a life that speaks to my greatness.

For any number of reasons there is also an isolation that comes with Alzheimer’s. This isolation is shared by the patient and the caregiver. It is worsened by this sense that we just shouldn’t talk about it. I believe that not talking about it will kill us. Internalizing and not processing the stress, grief, myriad emotions, frustrations, challenges, joys, triumphs, tears, laughter, and more will kill those of us serving as caregivers before our loved one dies.

Not knowing the 10 signs of Alzheimer’s and the difference between normal aging and Alzheimer’s is another reason why many get diagnosed until advanced phases. For my family, we attributed Mom’s early indicators to aging and her ever evolving broken-heartedness over the loss of her soul-mate.  I embrace that we could not have prevented her from developing Alzheimer’s while also embracing that there are some things we could have done early on in terms of planning and preparing though. (I told you that this was going to be all over the place. LOL)

It was not until I shared the information about my mother’s diagnosis that I learned about the number of people in my life who also had loved ones, spouses, siblings, co-workers, friends, etc. with Alzheimer’s. We never talked about it. If we did talk about it, I was not listening…AT ALL…and I regret that.

Everyday with Mom was baffling in the beginning. I simply wanted her to eat well, recover from knee replacement surgery, and get back to being herself. My delusions may have been bigger than her’s at that point! Then I got angry and that anger led to me getting focused (that’s just what I do when I get angry). I started doing research, reaching out to the Alzheimer’s Association, reading books and articles, subscribing to blogs, following different folks on Twitter, Tumblr, Instagram, Pinterest, posting on social media, and connecting with other caregivers. I clung and still cling to anything that gives me a sense of control while on this out-of-control journey through Alzheimer’s. Being informed gives me that sense of control that I desperately need. There is a whole world of information, resources, support, and inspiration out there and I try to take in as much as possible. I hope that you do too. We do not have to be uninformed or isolated and we shouldn’t be. I also had to do some things to help me let go and embrace the complete lack of control I have over what is happening to my mother. Faith and trust in God have been a major part of my journey.  Attending church, strengthening my prayer life, meditating regularly, and studying the bible and other writings have been key. Information and Spirituality are my yin yang.

You still with me?  It’ll be over soon. You’ve gotta check out Seth Rogan’s testimony before the Senate too though. I hope you like it as much as I do. 

This Alzheimer’s Journey has taken me through some emotional hills and valleys and lots of twists and turns. It has led and continues to lead to the reexamination and redefinition of relationships, especially my relationship with my mother. As I wrote about earlier, it has also solidified my status as a “daddy’s girl.” I have chosen to let this journey alter the trajectory of my life, career, and finances. My health and fitness journey was kick-started by me realizing I needed to be much healthier if I was going to serve as my mother’s caregiver. This journey has led me to pursue a deeper and more intimate relationship with God. This journey has put me in touch with my anger and helped me heal. This Alzheimer’s journey is profound for the patient, the family, the caregiver(s) and it is certainly not for the faint of heart. It has impacted my life in ways I could never have imagined.

I hope that this post motivates a caregiver to reach out for help on his/her journey. We need help.  We need support. We need each other. This Alzheimer’s journey…

Whew, you survived the ride. Thanks for hanging in there to the end. :-*  I’ll be more focused on my next post…promise.

Delmarie at CMBC's Alzheimer's Awareness Day 2014

My church has started a support group for caregivers of people with Alzheimer’s (isn’ t that cool!). We have also started a team for the 2014 Walk To End Alzheimer’s – PG County, MD. Please go to: http://act.alz.org/goto/DelmarieHines to learn more about the walk and to make a tax-deductible donation. All contributions are appreciated. My goal is to raise $5,000 to support patients, caregivers, research, and to find a cure. The End of Alzheimer’s Starts with You and Me!

Aside

The Mystery of Truth and Reality

24 Oct

My mother is brilliant. My mother is 83 years old. My mother has Alzheimer’s.

Truth and reality used to be black or white issues for her and for me. Now that I am serving as the primary caregiver for my mother, I realize that black and white do not begin to capture the complexities of truth and reality when dementia joins the party.

Mother spends most days trying to figure out where she is and how she’s going to get back home so she can get her church clothes and get ready for church.  She gets terribly disappointed when I tell her that it’s not Sunday.  The multiple daily reviews of the fact that she is home and that all of her belongings are here don’t register as truth with her. Her realty is that this is some other house were she has to pay rent. Since she is no longer working she wants to get out of here because she can’t pay the room and board fees. Although she has lived in her home for 35+ years, it is no longer familiar to her. Her home in her reality is now a place where she lived 70+ years ago. Anything that I or anyone else says cannot register as true because it does not align with reality…her reality. I watch her trying so hard to make sense of it all.

I decided to try something new today. My story is that the nice people who own the house are letting us stay here rent free because they appreciate the years my parents spent helping others. All I have to do is keep it clean. They also allow us to eat whatever we like as long as I cook it. She LOVED that. She was moved to tears and wants to write them a letter of thanks. I have repeated this story several times, but it keeps working. It aligns with her reality and her truth. We both feel better.

One of the blogs that I read regularly is the Alzheimer’s Reading Room. This blog is full of great information for me as caregiver. In a post, Communicating in Alzheimer’s World, by one of my favorite bloggers, Bob DeMarco, he emphasizes that the goal of a caregiver is to lessen the stress of the deeply forgetful. Constantly attempting to force my truth and reality into my mother’s world is SUPER stressful for both of us. When caring for my mother, I must enter her world. My goals are peace and safety. Those goals are not reached if I do not embrace and support her reality and her truth. Learning to hold both her reality and mine along with her truth and mine is challenging when I lose sight of the goal. Peace and safety are accomplished when I focus on supporting Mom’s reality and helping her align the things around her with her truth.

I keep saying that I am going to be ready to deliver Oscar, Emmy, and Tony award winning performances at the end of this journey. I am learning the ebb and flow, twists and turns, and ins and out of owning someone else’s truth and reality. I am learning how to peacefully live with someone who lives in Alzheimer’s world.  This is the key to success as a caregiver for a parent with Alzheimer’s. This is the mystery of truth and reality in my life.

YOUR-TRUTH-VERSION-REALITY-WOB_t