Tag Archives: Dementia

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

For when you’re at your wits end – Discussion – Alzheimer’s Foundation of America Support Community – Inspire

17 Jul

For when you’re at your wits end

and just can’t take anymore of the repeating, repeating, repeating…the pacing, pacing, pacing…the crying, crying crying…the incontinence…the trying to get out the doors…the wanting to “go home”…the not knowing who you are…the not wanting to take the medications…the not wanting to go to bed…the false accusations…the frustrations…the anger…along with all the other negative/aggravating things they have no control over, I believe I have a solution. 🙂

NONE of us are perfect, but…we, the so called “normal” ones, CAN control our reactions to those negatives, they CAN’T control.

When you find yourself at your wits end to each of those negatives..get inside yourself and find one thing you don’t LIKE about yourSELF & try to change it, to the point of STOPPING it. How hard can THAT be?! Pretty darned hard!!!! With our “normal” minds, we should be able to control those negatives in ourselves…right? 🙂

After you’ve gotten inside yourself and found that very FIRST thing you don’t like about yourself & can’t seem to stop doing…take a good look back at the one that absolutely HAS no control over their actions and words. How hard is it for THEM to change and stop those negatives? It’s impossible.

They may WANT to stop them, but…just like us with the “normal” mind who would want for our own negatives to be stoppable…they don’t stand a GHOST of a chance at stopping them, while we DO stand a GREAT chance at stopping our own.

Give it some thought, the next time you feel you ARE at your wits end… It just may save the day.

(HUGS) to all the caregivers & their loved ones!

Hug ’em while ya got ’em & keep the faith!

 

For when you’re at your wits end – Discussion – Alzheimer’s Foundation of America Support Community – Inspire.

via For when you’re at your wits end – Discussion – Alzheimer’s Foundation of America Support Community – Inspire.

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!

Daddy’s Girl

6 Jan

Today marks 19 years since my father died. I still mark it as THE WORST day of my life…and my life has not been a bed of roses.

I have never been ashamed to own the label “daddy’s girl” even now in my late 40’s. My role as a daddy’s girl is as present today as it was 19 years ago. My devotion to my father is the driving force behind my decision to serve as my mother’s caregiver. He loved her passionately and completely. As a daddy’s girl, it is my duty, since he is not here to do it himself, to take care of the woman he adored. I recently shared this thought with a friend of mine. At the time, I felt ashamed of feeling this way. Shouldn’t I be taking care of my mother just because she is my mother? Well, the problem with that premise is that Alzheimer’s has basically erased her role as mother from her mind. She knows my name, but RARELY knows that she is my mother. I am most often the lady that takes care of things around the house. At this point, it is at times painful for me to think of her as the woman that raised me. That woman had a bright and quick mind. That woman could juggle the priorities, needs, and wants of a husband, 4 children, a demanding career as a hospital administrator, and the many duties of being a pastor’s wife…Sam Hines’s wife. The woman I am caring for cannot do any of that. What she is, was and always will be though, is my father’s sweetheart. For that reason, even when she is agitated by the mere mention of the fact that she has children, she is treated with great love and care.  It is also powerful that in the midst of every thing that Alzheimer’s steals from my mother it has not put a dent in these three knowings for her: 1) God is real; 2) She loved her husband; 3) Her husband loved her.

Here is the painful part. My mother is at a point where I need to recommit to my commitment to take care of her, even if that means letting go of my role as her primary caregiver. I see this as also the final act of really letting go of my father. THAT’S THE PAINFUL PART. My grief, anger about my father’s death, and love of my father have defined me for almost 20 years. I am aware that being this lost in grief and anger is not what my father would want for me. This is not the way he would want my love for him to play out. He always wanted me to live my best life – a life submitted to God; a life in service to others; a life full of love, joy, laughter, and sacrifice; a life that allowed me to experience how big and great God is; a life where my gifts and talents are known, developed, and demonstrated. That is the ultimate life of a daddy’s girl…if your daddy was Samuel George Hines.

Here are some of his favorite sayings:

1. Reconciliation is not cheap
2. We are Ambassadors for Christ
3. Jesus Christ is Lord
4. We are Image Bearers
5. If you can’t find a role model, BE ONE
6. Still Under Construction
7. Alive and Grateful
I want to end this with the same words that were the last words I spoke to my father before he died. I LOVE YOU, DADDY.

Dads Birthday Collage

Samuel George Hines
April 19, 1929 – January 6, 1995

Let’s Keep Holding On

6 Dec

It’s been one of those days where I just feel like I am living out some personal version of hell. Mom was up when I got back from working out (always a sign that things are going to be a little bumpy). She was dressed and ready for me to take her home. Due to not having time to get my filters together before engaging with my mother for the day, I challenged her reality. That interaction has set the tone for the rest of the day. She is clear that she needs to get out of here and go “home” to where her things are and where people understand her. This has gone on non-stop all day. At this point I am exhausted, in tears, and wanting several strong drinks.

So you may wonder why am I posting this blog. Well what I know is that often caregivers get isolated. We feel like no one else is hanging on by their fingernails. We feel guilt about being overwhelmed with caring for a loved one. We need to know that someone sees us, feels our pain, and simply knows we are alive. I post this blog to let some other caregiver know that I see you. I feel your pain. I know you’re out there and I am so glad that you are there doing what you do.

In the middle of being completely overwhelmed today, I received a text telling me that someone close to me had received a miracle. That message meant more to me that he will ever know. I needed to know that miracles were still happening. I needed to know that God was making things happen. I needed that desperately today. I needed it and I got what I needed. I can keep going. I can keep holding on.

LET’S KEEP HOLDING ON!

Below is information from a post on the Alzhiemer’s Association website. For the full article, click on the link at the bottom of this excerpt.

How to respond

  • Don’t take offense.
    Listen to what is troubling the person, and try to understand that reality. Then be reassuring, and let the person know you care.
  • Don’t argue or try to convince.
    Allow the individual to express ideas. Acknowledge his or her opinions.
  • Offer a simple answer.
    Share your thoughts with the individual, but keep it simple. Don’t overwhelm the person with lengthy explanations or reasons.
  • Switch the focus to another activity.
    Engage the individual in an activity, or ask for help with a chore.
  • Duplicate any lost items.
    If the person is often searching for a specific item, have several available. For example, if the individual is always looking for his or her wallet, purchase two of the same kind.
  • Share your experience with others.
    Join ALZConnected, our online support community and message boards, and share what response strategies have worked for you and get more ideas from other caregivers.

Read more: http://www.alz.org/care/alzheimers-dementia-suspicion-delusions.asp#ixzz2mjUTd3Bg

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