Tag Archives: Alzheimers

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!!!

We’ll See What the Lord Will Do

5 May

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

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

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

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

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

The Past, Present, and Future

27 Oct

past-present-and-future

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

Be Blessed!

Go Ahead and Cry

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

photo by Benjamin Rusnak

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

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

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

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

There Is No Cure

30 Oct

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.

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.