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

Daddy’s Girl

6 Jan Mom at Dad's Funeral

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

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