Gracias Te Damos Señor

Tis the season to be thankful. I take too many things for granted, in these strange and difficult days. Good health and strength is something I’m so grateful for, especially as I’m climbing that mountain. Wait! Or am I…. descending the mountain? A healthy mind to process life does not go unnoticed in my book anymore. I’m recognizing again that we have things for seasons and sometimes we get special one time experiences that a grateful heart will tuck away into the memory, sometimes dormant, until something triggers it. Today was a trigger day. 

Usually when things happen they pile up needing attention ahorita mismo! This entire week has been chaotic, as all hands are on deck to plan a baby shower for our 8th, asi es 8th grandchild. As you can imagine everything is a mess, and with the weather being dry, everything is dusty and dirty. De repente, I get notice that I’ll have guests, que exagerada! It only felt like all of a sudden a grenade was launched and I had to get busy to save my life! The room I had to prepare was my apas room. I call it Tatas room. His room has had use, but not often in these past 11 months. I use it and it is not weird or painful to go in it, no mas que ahora I had to do some deep cleaning, and dusting reaching areas that require moving furniture around, ya saben. I had wiped down photo frames with images of dad and family. These faces look right at me whenever I go in, they’re part of the room. Suddenly I was transported back to those initial transition days of taking care of my apa. It was such a confusing and difficult time for him. He said he could do life alone, and he truly believed he still could. He stood his ground, there was nothing wrong with him he argued, he wasn’t stupid and he certainly wasn’t a baby. Dementia was already present but of course he didn’t know it.

We brought my dad’s pictures from his home into his new room.

The straw that broke the camel’s back, was yet another fall in his daycare facility, a blow to the head that sent him to the hospital. My sister and I scrambled. One of his caregivers was with him in the ER waiting for test results and for me to arrive. I already had a room ready for him in my home.

I’m going to attempt to describe what it is to battle Dementia, or mejor dicho, what me and my sister experienced with our apa. Dementia refers to memory loss and the loss of other reasoning abilities. It  is a progressive disease, which when severe enough will alter a person’s ability to function daily. Our apa dealt with dementia of the Alzhemiers kind.  It gets into the brain and squashes out memory and spreads until it reaches across the mind. Many sundown experiences put us into a twilight zone episode where we spun around in circles getting nowhere. “Redirect him,” the nurse would tell us, and when we weren’t bound up in frustration and angry emotions, we could manage that. Some of the more successful evening battles against dementia usually involved dad telling a childhood story from his long term memory archives. I tried to always be prepared with my writing  tools. 

Sometimes the skirmishes at  sundown left me confused! Today, deep cleaning this room, triggered a night time conversation I’d had with my apa. That first night in his new surroundings he was uncomfortable and awkward. We had settled him into bed and he wondered where I was going to sleep since he had taken my bed.

Me: No apa, es su cama

Apa: No, mi cama esta en mi casa

Me: Esta es su casa

He chuckled, like I was being polite, you know how we latinos open our home up, “mi casa es su casa.”  Que casualidad that he remembered that he wasn’t home. Sometimes dementia made me suspicious that perhaps he wasn’t confused, could he be faking it? Apa was worried about where I would sleep. I assured him that I was going to my room but if he needed anything I would hear him call and come check on him. I had a good monitor that picked up even the sound of his breathing.

Apa: Y Ben donde esta?

Me: Apa, Ben esta en nuestro cuarto.

He chuckled again, looking at me sideways. 

Apa: Ese no es Ben! Hijole! Dads long term memory only remembered the young Ben not the… hmmm… mature one 😀

Of course I was offended, dementia or no dementia mi apa was insinuating that another man would be in my bed! Imaginate! I stood up for myself of course and explained and explained again, four or five times, that Ben was the only man for me. I eventually resorted to the redirection trick and it worked. We survived our first night, apenas!  Another thing to be grateful for is my flaco who was patient and kind even though his suegro many times thought he was a stranger in the house.

Dementia torments it’s victims and their caregivers. Y por supuesto, my outlet has been my writing. It cages you up sometimes. At times I felt sorry for my apa and other times I was right in the cage with him. We experimented with him living part time in my home and part time in his, but we realized after a few months that it had only confused him more.

dementia is a humbling experience for both the patient and the caregiver.

I wrote this after a long evening of confusion for him and fatigue for me.

Caged

When are you taking me home?

Dad, you are home.

This is my home?

I must be losing my mind.

Where’s Lupe?

Your wife died last year.

What? I saw her last night.

I must be losing my mind.

Is my mother alive?

She died a long time ago.

Why didn’t anyone tell me?

I must be losing my mind.

Where’s my wallet?

In your pocket.

Where’s my keys?

I must be losing my mind.

Is my car outside?

It’s right outside.

I can’t see it.

I must be losing my mind.

Tell me about your family?

Your husband repairs tires?

That’s my sisters husband,

My husband paints houses.

I must be losing my mind.

When are you taking me home?

You are home Dad.

Don’t you recognize the pictures?

I must be losing my mind.

Dad voiced those words many times when he couldn’t remember and then he would get confused and plenty of times angry because we didn’t understand him. It was a vicious cycle.

Today, I was sad for a moment about that trigger that led me down to that memory, but then I was glad for the opportunity to have lived it.

I am thankful for those years with my dad and for all the years I’ve had with family and friends. I’m grateful for every year that I have a healthy mind, to cherish, understand and appreciate my loved ones.

The Mourning Process

Mourning has seven stages. The mourning process is a difficult passage that requires time and grace. Mourning will take you to sweet memories and then cast you into darkness. You plan your day, it’s going to be a good one. Then one thing, anything, will trigger a memory. If you’re all alone you’ll find yourself crumbled up in a heap of tears. I’ve walked this road three other times and I still don’t know what stage I’m in today.

Triggers

This afternoon at the grocery store I saw a man walking with his elderly father. A frail old man who was being led by his son (at least that’s what I imagine). The son impatiently prodded him from behind to make his father walk faster. The viejito took those tiny steps as quickly as he could. I held my breath as I watched him, ready to run and catch him if he fell. Every step, every movement was a victory for him. I was happy and I was sad for him.

Once upon a time that son was being led by his father. We never think that it’ll happen to us. My dad was too strong to have his body weakened by age. His back was not supposed to give out at eighty years old!

I Don’t Want To Get Old

Once, when I was fifteen I overheard him say, “I don’t want to live to be an old man.” My snotty teenage self thought, “Dad you’re already an old man!” He was fifty-five, didn’t he realize that was more than half-way to one hundred?! Yikes! That’s my age now.

My father hated the humiliation of a weakened body. I hated it too! Every time I lifted his arms to dress him, his skin hung on him, I was sorry for him, I did not like that either. I realize now that I was already mourning.

La Tercera Edad

The english word for a person over 65 is “senior”. My apa was a newlywed for the second time at his senior age of 65! In spanish, it’s called la tercera edad. Think about it. We carry a baby into the third trimester and at the end of that tercer tremestre that baby passes that birth canal and takes his first breath, a very difficult passage. La tercera edad is like that. Not everyone gets to live on that stage and my dad didn’t even want to be on it. Many times he murmured his frustration that he was done living. I got to the point that I would say “Dad, you need to bring that complaint to God” 

Dementia

As difficult as that stage was, I thank God so much that he gave us these years. Despite the cloud of dementia we managed to get through the  difficult conversations and confront past violations. We faced that terrible pride looking kind of haughty as we took it on.  It has destroyed relationships and deceived us into a corner of fear and rejection. Many times we were able to push the dementia aside and make sweet memories. Of course the many years of  “no relationship” wants to accuse me at times.  I do find myself wondering if my apa loved me. He didn’t say those actual words to me, and when I finally said them to him I’m not sure if he heard me. 

His tercera edad affected us so much. I cringed every time my big sister called him “daddy”. It made her so vulnerable. We couldn’t be vulnerable, we had to be strong as we  helped him get through that dark and scary valley. When we were little and the  earthquakes would wake us up at night we would run to my apa and amas bed. There in their bed he would protect us. 

Caregiving

Toward the end of last year,  I grumbled a lot about the constant repeated conversation  “AAYY!” I’d go down the hallway, no longer running because I knew the routine. “Que Paso Apa?” He thought I left him again. It was wearing me down. “Cuando nos vamos a la casa?” “You are home Dad.” He knew he wasn’t home. “Donde esta Lupe?” “Your wife died Dad.”

Why didn’t he ever ask for Chuy? My mom was forgotten to him and it hurt so much to know it. I cried many times over, so conflicted with emotions. I was angry that he did know what he was saying! I mourned my shut up life. I felt guilty that I felt so much, what a selfish daughter I was!  I was exhausted. 

Final Stages

Then, he turned ninety-six. By this point in his life, his last month he was spending all his days in bed. He was shocked to know he was so old and when he said again for the millionth and one time “ya estoy listo para el arrastre” My usual response was “Well only God knows when you’ll be ready to be buried Dad” But this time, he was. It’s what we were expecting, yet it was so shockingly unexpected. We were barely able to warn our brothers. 

Just like that! In a few days, he breathed his last breath and was gone. My nephews drove up from the Valley and missed him by fifteen minutes. He could no longer wait for them.

Death

Suddenly, his cluttered room with all his equipment and endless supplies was empty of him. He couldn’t be gone! Wasn’t it supposed to be dramatic? Shouldn’t my sister and brother have seen that last breath leave his body? How could he slip quietly away, I wasn’t even in the room. He never listened. I had specifically told him that morning “Apa, por favor. I want to be right here with you when you leave.”

Packing It All Up

Hospice took his bed and oxygen tank. Any supplies that they lent us were swept away. My sis and I kept ourselves busy with clearing things out. But now, all the little things that are left fill his room and it feels like he’s there again. I have to finish up his room. I have to move forward. Things are going back to normal, whatever that is. Business as usual.

I got busy with emptying out my fathers room. My plan was to just get rid of everything my sis didn’t take. It should have been easy to do. Bag it up and designate donations or trash. 

I didn’t realize I was avoiding the chore. I didn’t know I was deeply missing my apa. I mean, my goodness I am now able to leave my house. I can sleep through the night. I am not anxious, nor is my dad. It was the final stage; la tercera edad and he so graciously and quietly crossed the finish line. You know, he was like that always, quiet smiles when he was happy, quiet firm stares when he had to take care of business. He never had to raise his voice at us. My ama on the other hand, let’s put it this way, I was blessed with her vocal chords.

Mourning

My dads keys. The keys to the house I grew up in.

It’s over now. His room is almost empty. I picked up his keys and I went to toss them in the trash. As they dropped into the can I remembered the arguments we would have about him needing his keys. His car and house keys. Wait! It was my house too! The keys to the house on 511 E. Delta street were still on the ring. I had so much to clear out and keys were stopping me?!

Every episode, any little thing that provokes me I share it with my big sis. I miss her too. When dad left, her week long monthly visits to my house ended. Mourning kind of piles up. So with my apa gone, I miss my ama more than ever. With my ama gone I miss my sisters. 

In mourning as you heal, you always water that memory garden, sometimes it is with your tears.

Some Advice

Back to where I left the viejito and his son . I wanted to judge that son and criticize his impatience, then I remembered my recent journey. Trips to the grocery store were a burden to me, but for dad they were his delight. Dementia affected his memory but not his sharp mind. He paid attention to details when we were on the road. He loved to watch all the interesting people almost as much as he enjoyed watching and hearing the birds. I wish I could have told that son to enjoy his apa, because even though you know that last passage is coming, it still catches you off guard.

Mourning comes and goes like the ocean waves. Hope is very key, while they cannot come back to us, I can live my life so that I can go to my apa, ama and my sisters. 

Have you lost a loved one? How are you coping with life?