There Is No Cure

30 Oct alz brain

alzheimers no cure

I had been feeling sick for a few weeks. I kept telling myself that it was just a cold mixed with being  really tired. Aren’t all caregivers tired? The weather is drifting between fall and summer from day to day. Isn’t everybody feeling a little under the weather? Then came the worst headache of my life, my throat felt like it was on fire, my eyes looked like I’d gone on some sort or illegal drug binge, my body felt like Mike Tyson had used me as a punching bag, I could stay awake for 2 hrs max at a time, and my fever kept coming and going. I FINALLY decided to call the 24 hour nurse line. The nurse advised me to go to an Urgent Care Center in the AM. A quick test showed that I had strep throat, an eye infection, an ear infection, and a sinus infection. I had the SUPER cooties! LOL  Here’s the amazing thing, I got 4 prescriptions filled and within days I was much better.

My mother and the millions of people living with Alzheimer’s have no magical cocktail of pills to cure their disease. THAT SUCKS! It just sucks. As my mother’s delusions and mood swings intensify, her memories fade, and her abilities lessen and weaken, I can’t help but get angry. I want a cure for my mother. I want a miracle for my mother. I want my mother to NOT have Alzheimer’s. I want reality to not be reality. I want a cure…NOW! Then I remember the words of Byron Kate, “I am a lover of what is, not because I’m a spiritual person, but because it hurts when I argue with reality.” I cause myself pain when I do not embrace the reality that at this point there is no cure for Alzheimer’s. That is simply the way it is. I have faith. I have hope. I also have reality. I embrace them all. My mother has Alzheimer’s, a disease for which there is no cure. I also believe that there will be a cure one day and that God has a purpose for all that this experience brings to my mother and all of us who love and care for her. All of this is true for me. If I fight against my reality I lose. I waste time being angry, depressed, overwhelmed. I get frustrated when the impacts of an insatiable disease like Alzheimer’s show up in my mother’s behavior and abilities. That is not fair to her. There is no cure and I must make peace with that reality.

#Warrior #Passion #Reset

18 Oct

delmariehines:

Much needed words of inspiration from my trainer, Byron Nichols

Originally posted on bnfitdc:

Fear had crept in unaware. It found homes in dark, safe, secret places. So it was a guest in a house in which it didn’t belong — and had nerve to get hungry. Now… had fear just snacked on vegetables and fish and the occasional pizza, it MAY have been alright. But fear has very specific cravings and tastes AAAAAND fear is determined in its quest for satisfaction. And I might add… quite bossy. And NOISY — annoyingly so. And believable. 

Despite what Samuel and Dalineta had instilled, fear had a field day. But Delmarie got tired. And then she got sick of being tired. And then got tired of being sick. She would soon discover three things about evicting this territorial enemy named fear. The first: Destiny moves at the speed of decision. The second: Fear is a L.I.E. The third: There is glory behind the fear. And this glory…

View original 48 more words

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.

Choices and Consequences

22 May choices_and_consequences

choices_and_consequences

There is so much talk about HATERS these days. Vultures ravage that which is already wounded or dead. Snipers hide and skillfully annihilate their prey, never having the guts to be face-to-face. I am not concerned about the vulture or sniper aka “the hater”. My concern is about the CHOICES I make all day, every day. I like to focus on relationships, problem solving, creating order out of chaos, creating desired results. I also focus on how I fill my time, occupy my mind, expand my heart, nurture my soul, and care for my body, process my emotions. My focus is really on CHOICES and CONSEQUENCES. From the moment I wake up, I am making choices that impact my life, my mother’s life, and the lives of many other people. These choices have consequences for me and them. I do not worry about the vultures or the snipers out there. At the end of each day, the things that concern me are the choices I make that are not authentic and reflective of my choice to be in submission to God. At the end of the day, I find myself focused on the choices I have made and how they have shown up in the actions I have taken or not taken, words that I have spoken or left unspoken,  thoughts and emotions that I have invested in and ones that I have ignored/hidden.

Life demands choices. Choices have consequences. CHOOSE WISELY

…and what I won’t do is invest energy in contemplating or commenting on “vultures’, “snipers”, “haters”.

choices and consequences

By the way, I re-read my posts and sense a real lack of joy.  That concerns me. I’ll talk about that more in my next post. Until then be blessed, be safe, and let’s BE HAPPY!

Be Happy - Del

This Alzheimer’s Journey

13 May Delmarie at CMBC's Alzheimer's Awareness Day 2014

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!

Live Better

16 Jan

LiveLifeBetter

Some days you have to look in the mirror and confront the realities looking back at you. Today is one of those days for me.

My family and closest friends know that I can have a pretty volatile temper. At this point it takes a lot for me to get angry. It usually builds up over time. When I get to the point of anger there is a long story playing in my head that I feel justifies the completeness with which I am going to go off. When I was younger my explosions would come immediately after anything or anyone made me cry. Being the youngest though my outbursts didn’t always get the reaction I needed. I was smaller, slower, weaker than everyone else. I also grew up in a household where you couldn’t say or do anything you pleased so a lot of things had to be played out in my mind rather than in reality. As I got older I moved into not letting people see me cry, so the explosions would seem irrational when directed at someone who didn’t know me. They would say something as simple as “Hello” and I would go completely off. What they didn’t know is that I was reacting to the sound of the voice I had attached to numerous painful and harmful memories. I was reacting to a list of perceived wrongs. Then e’Marcus Harper entered my life. One day he challenged a group of us to address the fact that we had so many buttons that people could push. He asked us to shift from focusing on our anger and frustration with the people pushing our buttons.  It was then that I really started embracing that the problem may not be all of these various and sundry people. I was my biggest problem. It was a turning point for me. e’Marcus went further. He challenged me to find ways to demonstrate love…to be a living example of Christ’s love…in my interaction with everyone. Well it’s been more than 10 years since e’Marcus said that and I’m still working on it.

At this point in my life I have very few buttons. The ones that I have are interconnected. It basically boils down to these: Please note that these are all based on how I perceive someone else’s actions and intentions. 

  • I do not like to be hurt, played, used, or hustled.
  • I do not like to see the people I love being hurt, played, used, or hustled.
  • I really do not like being used in anyone’s efforts to hurt, play, use, or hustle someone else.
  • I get beyond angry when someone is attempting to use me in their efforts to hurt, play, use, or hustle someone I love.

Recently I found myself going though all 4 things in the matter of a few moments. I tried to just sit with it. I also tried to let it go. None of that worked. I ended up typing a vitriolic response to a message posted in a private chat group. One problem is that NO ONE who received my response had ANY idea that I was responding to buttons 1-4 having been pushed. Another problem is that my response did not exemplify the way I want to live my life.

Last night, I thought about my response to the group and felt bad about what I had said. I re-read the response this morning and felt ashamed. There was no love in my response…NONE. I knew I had to apologize. I had missed my opportunity to explain myself, but there was time and space for an apology. I sent the apology today and it was accepted. I am grateful for that.

Now I must face the choices and consequences part. The person who I wanted to protect was the one that I hurt with my response. If my role was that of a bodyguard, it’s a though I brutally attacked the person I was supposed to be protecting, Our relationship may not fully recover. That is a consequence of my choices. I demonstrated a complete lack of love…in any form. That memory will linger with everyone who read my response. That is a consequence of my choices. I decided that re-framing my anger as passion made it OK to say whatever I wanted to say. I went against the old adage to “stay sweet so your testimony won’t spoil.” Choices and Consequences.

I hope this is the last time I have to learn the following lessons. If it isn’t the last time, I hope the next time is at least less painful:

  • It is better to deal with the fundamental issue rather than the symptom.
  • I must still slow down and heavily examine the possible impact of my actions before I say and do things.
  • Whenever my reaction calls for me to say to God that it would be best if you plug your ears and cover your eyes for a few minutes, it’s better that I simply sit quietly and do nothing.

I wish I could tie this up nicely and stick a big pretty bow on it,, but this is not that kind of post. This is a post that ends like this. I’ve taken a look at my buttons, choices, and consequences. I’ve learned some lessons. Now it’s time to stop writing and start living better. I hope you are inspired to take a hard look at some aspect of your life or way of being.  Let’s Live Better!

For Christ’s Love Compels Us… 2 Corinthians 5:14

Standing on the Precipice

10 Jan

precipiceI stood on the precipice today.  In a 2 hour span I received back-to-back text messages and calls that showed me that I am not in control. Being forced to submit to the fact that I am not in control of anything pushes EVERY button I have. I get mad, angry, afraid, childlike, irrational…then I start grabbing at anything I can control and control it to DEATH! I eventually graduate to trusting God, submitting to the process, and believing in myself. I’m still working on skipping the 1st part and going straight to the second part…

Being out of control feels like chaos to me. I don’t like chaos … somehow this does not apply to the clothes all over my bedroom, but I digress.  I have spent 99% of my working life focusing on turning chaos into order. I do it well. Today though, I couldn’t find anything to take me to the safe waters of order. My only hope for order was silence. I needed complete and utter silence so that I could think this all through. When I got silent, I got  mad at God. I mean REALLY mad. I ranted and raged. God was silent. I ranted and raged some more. God remained silent. Then I just got REALLY pissed off.

I needed to feel in control of something. I sat down and couldn’t make sense of anything. Then I decided I would have my cell phone turned off. I soon realized that having no cell phone would impact many other things in my life, including my life with BNFIT. I sent Byron, my trainer,  a crisp, clear, unemotional text message announcing that due to a decision I have made, this will be my FINAL week as his client. I clicked SEND and the rush of CONTROL went COURSING through my body. He quickly replied, “No M’am!” I was baffled by his response. I did not ask a yes/no question. I made a declarative statement. I’m not sure what I expected his response to be, but it was not that. His rejection of my resignation had more weight than my resignation. Control was slipping away again and I didn’t like that one bit.

I was teetering on the edge of the precipice. God was silent. My trainer was defiant. I was overwhelmed. Tears started flowing and I just let them flow. It was at that moment that I realized I had a decision to make. I was either going to succumb to the voices telling me to give up or I was going to submit to the voice telling me to trust God. I decided to trust God. Standing at the precipice was scary and powerful. I felt weak and strong. I felt like I could do nothing and everything. Standing at the precipice made me feel alone and aware of the love and support that surround and support me. It was another adventure in my long winding road to submission. Let me make this clear, nothing magical happened in this moment re. the matters I need to address. Everything is not suddenly roses and sunshine. I have work to do…including strengthening my trust muscles.

Later in the day I got to experience what happens when I do my part and let God do the heavy lifting (thanks for that, Steve). My mother’s doctor took her off of 3 of her medications. When I moved in with my mom she was taking 10 medications. She is at her ideal weight. her blood pressure is normal. Her cholesterol levels are in the good. She is now off of all 10 meds. My mother is 83 years old, has Alzheimer’s and is healthier than most people in their 50s. Mom did her part. All of us who are participating in her care did our part. God did his part. My mother is only on 2 medications for Alzheimer’s symptoms at age 83. That’s pretty incredible.

When life takes me to the precipice, I decide whether I fall, leap, run away, or freeze. I decide whether I will trust God, submit to the process, believe in myself or let fear, anger, doubt, and worry stop me instead of motivate me. Today, I experienced all of this. It has been a rough day. It has also been an incredible day.

cliff_jump

“When I am afraid, I will trust you.” Psalm 56:3

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