Tag: dementia

How I Prayed with My Apa

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One of my favorite kinds of gifts is pretty journaling books, pero I especially enjoy the little pocket size ones that fit in my purse, they always come in handy. Pues, gracias a Dios que mi hermana Marina has given me a few of those little books.

Recently as I’ve been getting reorganized and refocused on my “apa stories” I came across some pages from one of those notebooks. They were entries of prayer lists that I prayed together with my apa. Imaginate, Reading that list took me back to those mornings when I was “trying to find a place” for my apa in my morning prayer time. Asi es, I found myself embarrassed to pray during those early days. It’s not that I was ashamed, it was more because of the way I pray.  I’m Pentecostal, y pues, sometimes I can get loud when I pray. God has never been offended by my loud voice or my emotion, but my apa might be. So I came up with a plan to “ease” him into my prayer closet.

I started having conversations with my apa about prayer. Asking him if he wanted to pray, and he wasn’t sure what I was asking him to do.

Apa: Quieres rezar?

Me: Que si quiere orar?

My apa didn’t understand the difference, so I explained the difference between the two forms of praying.Orar means to pray, as in bringing devout petitions to God or object of worship. A spiritual communion with God as in supplication, thanksgiving, adoration or confession. Rezar means to recite a prayer. I didn’t have a memorized prayer, I told my apa that we could bring our needs to God and he would hear us.

Me: Apa what do you need from God?

Apa: (a chuckle) I need a lot of things.

Me: Like what?

Apa: “I can’t figure out in my head all the necesidades, porque son muchas.”

He said honestly that he didn’t really know how to form a prayer but that if I would help him, con mucho gusto he would do it. From that day on as much as I was able to I wrote down his petitions. Nunca me imagine that those simple prayer notes would be such a treasure to me today. 

My apas prayer requests were to the point and honest. We would talk about his needs and the needs of his family and I would jot them down. We would talk about his desires and the hopes he still had, often included in the list was a prayer that he would have strength to walk again. He also often hoped for a call from his boys, so I wrote that down. I chuckled when I read that petition again, “recuerdales que tienen a su padre que esta bien” He sarcastically wanted God to remind his sons that they had their father who was alive and well”  He was good about remembering each of his sons by name, that was important to me. I worried that he would forget us. He talked about his frustrations and difficulties to understand this very difficult stage of life, he just couldn’t believe that he was so old and weary, onto the list went his need for patience. He often remembered at prayer time to ask God to help him with his memory because he said his mente wasn’t working very well anymore. We talked about my needs, I wanted him to pray for me, I wanted him to feel my need for his prayer for me. Throughout our “prayer” conversation I filled him in on family news and he would react and add certain needs to the list. He wondered about his siblings, if they were still alive and we asked God for their protection. He prayed for my youngest brother “Give strength to Chicha so he could lift himself up” as he was battling cancer. Siempre,  he was grateful to God for the blessings in his life. 

Then we would pray. To be honest, since I was “the experienced” praying person, la que sabia orar, I prayed and he listened with his eyes closed and he said amen in agreement. Eventually we both got comfortable with praying together. Luego I would dive into my prayers and he listened to my emotional petitions and supplications, somehow my booming voice lulled him to sleep.

En Conclusíon 

Prayer is a wonderful time with God, If you don’t practice it, te animo, do it, you’ll be glad. Gracias a Dios for my prayer time with my apa, have you ever prayed with your father? Have you ever asked him for his blessing? If you are able to, hijole! Don’t hesitate to ask him to pray with you or for you. You’ll be so glad you did. 

Out of The Pages of My Caregiving Diary

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March 12th is a day to remember on the calendar for me. One of my dearest friends was born on this day, I am so grateful for her in my life. Y luego, my second grandchild was born on March 12, he also took a star position on that day. Hay mas! We also celebrate a special wedding day; Mr. & Mrs. Emmanuel Zepeda, happy anniversary Cita! Added to that beautiful day is the miracle God did for my granddaughter Rachel who was miraculously healed on that day from a dangerous hemangioma.

I had it all planned out to write something else with happy wishes on this post, and I did, pero, it didn’t feel right or good. In the midst of all those celebrations comes the cloud of loss. That day also brought loss for my apa. His second wife died on March 12. After his loss more change then confusion followed. As much as I do not want to go in that direction of mourning, I have remembered its sting.

Quizas la lluvia is adding to my mood, rain does that to me. My trip to Jalisco was beautiful, but also a stark reminder that of my apas 9 siblings, counting him, only 4 were with us still. Seeing my dad’s youngest sister at 79 years of age and his 93 year old little brother brought such sadness. Especialmente when he said “My brother was 96 years old when he left? Then I’ve only got 3 years left” She had commented “Ya nos estamos acabando” We are being finished off.

Looking through my journal I read about my caregiving days with my apa. It is with different eyes that I read those pages. I think I feel some guilt for feeling all that I felt. 

This page in my journal, dated October 26, 2019, arrested me as I remembered the turmoil of that season..

My Journal Page

10.26.19 Sat. Night

Maggie’s (this was one of his other caregivers) gone and I’m back on duty 😶 Lord I don’t know how to articulate what I’m feeling. Isn’t taking care of someone supposed to be to make them better? But instead, taking care of dad is about watching him grow weaker.

God I know talking to you should be enough. 

God these doctors seem to think or be leading me to accepting Dads death. Is this supposed to happen? God help me please. I feel so helpless. Dads weaker, Dads tired, dads lonely, I’m not making his life  better or mine. What did I expect by bringing dad here? (ves, in our attempts to help him and us, we had started to bring him to our home every month for two weeks, then back to his home. This only brought anxiety and confusion to him. When he was permanently in our home he knew it wasn’t his house, everyday that we helped him dress, he expected that it was the day he was going home)  

In my mind I thought maybe that he would find peace. I expected that salvation (ves I was praying for him to repent of his sin and ask Jesus to be Lord of his life) was gonna have him rejoice and be glad.

He’s not well, he’s not happy

I’m tired, maybe that’s what all this emotion is about?

God I wouldn’t want my kids taking care of me like this, my poor dad, so humiliating. What is the right thing?

The man he was is gone, maybe in a certain way that’s good?

I’m tired of having strangers in my home

I’m tired of feeling achy

I’m tired

God I feel such anxiety.

En Conclusion:

That was rough. The journaling did help and it helped now, but  so did talking with my sister. Lately I have been feeling a lot of emotion since I went to visit my apa’s siblings and his pueblo. It’s been a roller coaster, feeling high on the privilege that I was able to go to Jalisco, see the deserted little town of El Amparo. Y de repente, crashing down into loss, as I see his siblings also very old and frail. I realize again that mourning has no time table. For the most part the pain of loss does lessen with time, but triggers go off when you least expect it. Al fin de cuentas, I am glad me and my sis were with my apa when he needed us most. I am also glad to celebrate grandchildren, birthdays and wedding days with miracles. Thank you Jesus that you are always with us. 

A Time To Mourn

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It turns out it’s true that mourning is a winding path and not a straight line. We experienced a busy April and May, up and down and all around! Then things quieted down, ya saben, a calm before the storm of wedding planning pelts us. A quiet house is rare for the Greene home, but we’ve had a couple of days of it, bien nice! Pero, every time I slow down, even just a little bit, I start looking back, wrapping up all the events in sweet memories, but somewhere along that wrapping I feel the absence of my loved ones. I get emotional and the void in my life accuses me. If Patty were here, she’d approve of Emery’s choice. My apa wouldn’t be able to make the long trip for the wedding. Y mi ama? What would she say about my hijos? Lupe, my big sister, she’d scare Emery’s girl with her piercing Zepeda gaze. 

It all started on Memorial Day when I counted my amas, 33rd year gone to her rest. Then, that night I read a blog about caregiving, y ahora I was looking for a picture and I got caught up rereading a string of family emails about my apas care.  Tengan paciencia,  I need to go through this process, my therapy, I went back to a time when my apa was a young man of 90.

Following In His Grandfather’s Steps

(This was when my apa was still able to live in his own home with caregivers)

It was my turn to take Dad to the doctor for his neurology visit. I drove into town early and thought that I would pull him out of his adult care program early and go have a treat. I had to wait until his full four hours were complete, the program was not going to bend the rules for Don Manuel! Maybe their funding was on the line?  No choice but to wait. When my apa saw me, he knew the day was over. The ‘junta’ was over and his work was done, ‘la mesa directiva’ had made no decisions in that meeting. Many times he was frustrated with that “board of directors” for wasting his time in these meetings. You see, every weekday when my apa was picked up for his adult care program, he believed that he was going to work. A day full of meetings, like when he was a young man in 1970 working for a program called Campesinos Unidos. Asi es, for a short time my apa didn’t work out in the fields.

He was ready to leave, but we had to wait, so we made small talk. I had to keep redirecting him. He asked about my family, and his usual focus was, “Y tu hija? Valentina, ¿Ya se caso?” For some time dad had been calling my daughter Daniella, Valentina. She must have looked like a Valentina to him, so I quit correcting him. Back to Daniella’s marital status. “Si Apa ya va a cumplir 3 años de casada.”  “Como? Cuando?” He was as always very shocked to hear the news that she had already been married for a short while. I asked about his day and the response was usually, “The director stood up there and talked and talked, but I didn’t know what he was getting at” Then,  “Y tu hija, como esta? Ya se caso?” This time, although he was shocked at my answer,  he remembered, and reminded me very apologetically that he wasn’t remembering things very well anymore.  That’s when he asked again why he was going to the doctor. I explained his dementia issue. He was diagnosed with short term memory loss, the new memories were lost immediately. However, my sister and I suspected that his memory loss was very selective. I explained that his struggle with memory loss  might be helped with medication.  Suddenly he remembered his grand- father who lived to be 101 and also suffered from dementia.  

Don Manuel waiting to see the neurologist

Young Manuel with His Abuelo

His grand-father was old and frail, housebound, confused about his past and present. He lived in the past. One day as his abuelo looked out the window he saw the sky heavy with rain clouds. Manuel knew that it was a beautiful clear day, blue skies and sunshine. He listened as his grand-father worried out loud about the dark heavy rain clouds.  He turned to him and said “those clouds are heavy with rain, it looks like an ugly storm coming in.”  Manuel knew his grand-father was confused and said nothing, it happened often. Gone was his strong grandfather who had sat erect on his horse and gave orders. 

My Apa

Then Dad paused and looked at me, “It looks like I might be taking after him.” I said, “Quizas, since you’ve only got 11 years before you’re 101!” Again, shock registered in his voice, “Que tan Viejo estoy?! He didn’t remember that he was 90, he was sticking to 80. Interestingly enough, it was that year that he officially entered the ‘needing care and supervision” stage of his life.  All I could do was ask God to hold back that dementia as much as possible.   As I situated him into the car to go to the doctor, he casually asked “Y tu hija, Valentina? Como esta?”

Daniella aka Valentina 🥰

At The Appointment:

Sitting at the doctor’s office was a sad unveiling. It was crowded. Chairs too close to each other, before covid of course, when all the world stood paralyzed. Men, women, young and old people all with some kind of nerve damage or muscle injuries, looking pained, angry and entirely restless. Hijole! I cringed at what I saw, heard and imagined. Most of them were there just for refills, they needed the temporary relief from the pain. Dad wasn’t in pain, why was I there anyway? And as if dad heard my thoughts he asked “Porque estamos aqui?” 

The appointment was to see the much demanded neurologist in Imperial Valley, in which I hoped the evaluation would determine a solution, a goal… something. After an hour of waiting, dad was called.  We walked slowly to an examining room, when we sat down, my apa was suddenly clear minded and present. As we waited for the doctor to enter, he asked if he was sick? He wanted to know why we were with “this” type of doctor. He looked at me knowingly, “estoy loco.” That’s when the nurse practitioner stepped in, the doctor wasn’t available. He  greeted us, shaking dad’s hand, and both men stared at each other. 

Nurse: ¿Cómo está señor Zepeda?

Apa: Bien, con un poco de dolor en la nuca.

 He was always fine except for the pain in the back of the neck which was his usual complaint. The nurse looked at the back of his neck, determined that it was probably arthritis.

Nurse: What is your name and birthdate? 

I guess if he knew those answers he must be fine verdad? Really, a long term memory, ingrained into him after 90 years.

 Apa: Manuel Zepeda Solano, 12-15-24. 

He stared at the doctor, dismissing him with his eyes. The nurse looked at me.

Nurse: Ok, I’ll  write his prescription for a refill, doesn’t seem like there’s any changes.  Que?! Por supuesto que things were changing! Why were we there? Was the medication helping? How could we help him? And us. When we got in the car dad pulled out the $5 that was always in his wallet and said “Vamos a una nieve.” So we went for an ice cream and I enjoyed hearing more about my strong bis abuelo, Solano.

En Conclusion:

Hijole! I do miss my sisters and my parents, I don’t know when I’ll see them again. It is my prayer and hope for that reunion. Pero mientras, it helps to pull out the memories and enjoy la familia I have here on earth. 

Almuerzo con mi Apa

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Once again I’ve been stirred by my niece, Cassi Maria to write about mi apa, her Tata. Claro que si!  She didn’t have to twist my arm, it’s always a comfort to me to share these memories. Reader, do you know the cancion que dice “Rosa Maria se fue a la playa”?  When Cassandra was a wee little girl I loved singing that to her, por su puesto que I changed it to Cassi Maria, she recently told me that she believed it was my own created melody, confession is good for the soul. 

Tata and Cassi

When Cassi visited her Tata and me, she always loved to watch me prepare breakfast for him.  She said that he got ‘special treatment’. Pero, I will clarify that at the time I didn’t believe it to be special, it was simply the way he liked to eat. He loved a nice hearty breakfast, which almost always included frijolitos bien fritos and tortillas. Sometimes I added meat, otras veces just blanquillos. The eggs would either be scrambled or fried, this did not impress Cassi. Pero, when I made a torta de huevo with all the fixings her eyes would light up as she appreciated my handiwork and she was happy for her grandpa.

I would scramble a couple of eggs and pour them over a hot skillet with oil. Luego, I’d cut up the egg patty, give it a quick and gentle stir fry with slices of onion and simmer it in a roasted tomato and dry chile sauce that mi ama taught me to make. Sometimes, if Cassi came in just as I was simmering la torta de huevo,  she’d inhale the spices from the sauce; el comino, the garlic and pepper and the chiles all made her hungry for Tata’s breakfast. 

As I’m writing this, I’m picturing my apa at the table, hands laced together, patiently waiting for his almuerzo. First his orange juice with Metamucil mixed in and his pastillas. He would always count them, and say, “Tantas pastillas?” In reality, he actually took minimal medication, compared to most 90 year old people. But still, he eyed me suspiciously. While I filled his plate with the beans and eggs and served his coffee, Cassi chatted with him and watched me, then chatted with me and turned to him.  My apa was always one to appreciate a pretty face, and his eyes always lit up when he saw Cassi, almost always saying to her “que guapa” and Cassi would blush and smile. At that stage in his life, dementia did confuse him. The conversations circled in the same questions. He wondered about Cassi’s connection to him, then he’d be surprised that “Chicha” (my youngest brother) was her dad. This might be a good place to explain that cultural habit we Mexicans have of using quirky nicknames. We create funny names and stick to them, maybe it’s just my family? Here’s one version of that conversation:

Cassi: Hola Tata como estas? (Hug and kiss)

Tata: Buenos dias! Que guapa! (my apas eyes always had a teasing twinkle in them) 

Cassi: Gracias Tata, si te acuerdas de mi? (remember this generation doesn’t know much about the proper use of “usted” so in Spanglish fashion she wanted to make sure he knew who she was.)

Tata: Parece que tu eres la Senora del Chicha? 

Cassi: No Tata! Yo soy la hija del Chicha (doing everything to restrain her indignation at being called her dads wife and not daughter ☺)

Tata: Su hija! A pose deveras que ando mal! (embarrassed that he made such a blunder, he’d blame his memory loss)

Cassi: It’s okay Tata (and Cassi would quickly forgive him)

When breakfast was served, my apa always waited til we were all seated so he could pray. I can still hear his wonderful prayer resounding in my ear like a sweet melody:

“Gracias te damos Señor por estos alimentos que no nos hacen falta…”

En Conclusion:

Hijole! Now I see how right Cassi was, those breakfast days with my apa were muy especial

This Easter weekend, I am reminded of the power of the resurrection of Jesus Christ, for without his sacrifice and gift of salvation I wouldn’t be able to see him again. 

Have a beautiful Easter y que Dios los Bendiga! 

When Dementia is Present

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Recently I’ve heard two stories about older people dealing with the difficulties of aging . Ray Bradbury’s short story: “A LITTLE JOURNEY: and  “Rewinding The Big Picture” from the Adventures in Odyssey Library from Focus on the Family. Each story immediately brought me back to those days when we would experience the most peculiar conversations with my apa and still, even now that dad is resting in peace, that confounding dementia grabbed my emotions! It shook out more tears and unnecessary “what ifs.” 

How was it that we were always surprised when dementia showed up? Most times it came at sundown, but slowly it creeped in more and more at random times of the day. Aver, see if I can share my story without offending.

 My father was a darn good looking man and well groomed always. He prided himself in looking sharp. It was a very humbling thing for him to face the fact that his teeth were weak and deteriorating. Still, it took a lot of convincing, to get him to agree that it was time for him to replace his own teeth with dentures, at this point he was well advanced in age. Eventually he adjusted and included a careful cleaning of his teeth to his morning grooming routine. 

Keeping His Independence

Then the season of caregiving began for him. We manipulated our lives and the hired caregivers to accommodate his life as much as possible without taking all his freedom. My apa who was in his 90s, fought to keep his independence. He insisted on having his space to do things on his own, especially his morning routine. On days we weren’t present he could manage by himself, most of the time. On those days we were “on call” for any emergencies that came up.

One morning, Marina was making her daily morning call to dad. That morning I happened to be visiting her for her birthday. He didn’t answer. Ok, no problem, maybe he was out of bed and getting ready. She dialed again, but he still didn’t answer. We went through the drill, keeping ourselves calm. She called relatives in town or his neighbor across the street to check on him. Meanwhile I kept trying. Finally he picked up the phone.

Case of the Stolen Teeth

“Bueno”

“Apa! Que pasa?” He sounded agitated and I could tell he didn’t have his teeth in.

“Pues anoche vinieron los rateros y se llevaron mis dientes!” 

“Que?!” He proceeded to tell me in colorful language that during the night two thieves had entered the house and had taken his teeth! 

“Esos, M—- buenos para nada! entraron a media noche y se me dejaron sin dientes! Y de que les sirvió hacer eso?! “Those good for nothing rats came in the middle of the night and took my teeth! Why would they do that?!

At that moment I held my chuckle since he firmly believed his conclusion. I wondered at his reasoning. How could he understand that stealing someone’s teeth was a useless and stupid thing to do? Yet he absolutely believe it happened to him, while he was sleeping. His teeth had disappeared. Not on the nightstand, nor in the bathroom on the counter or on the floor, vanished. When the caregiver arrived to make and serve breakfast for him she found him still in the bathroom, angry and looking very much his age without his teeth in. Marina got on the phone with her while she looked again for his teeth, she went as far as checking under the bed but did not find them. Her time was ticking, she hurried to make him breakfast. Avena, Cream of Wheat should be easy to eat without teeth. Dad didn’t eat, his whole morning was ruined. The entire morning he sat in front of his tele, very conscious that his mouth was sunken in. When the caregiver returned, he asked her to get his teeth, forgetting they were lost. Dementia played those tricks on him, instead she tried getting him to eat something soft.

Meanwhile over at our end we too fretted over the missing teeth. Dad had to eat something other than jello.  We brought the case to the God of the Universe. Asi es, we had been desperately praying, asking God for his help in this matter. The caregiver came back again in the afternoon determined to help us find my apas teeth. Did someone take those teeth? Marina was once again on the phone coaching her to look in the oddest places. Quien sabe, maybe, just maybe they’d appear in the fridge, or in the kitchen sink. She meticulously searched in the medicine cabinet and found them sitting in a white suppository container. It was exactly the same color and shape as the one dad used for his teeth. Mystery solved, case closed. But it wasn’t. We were confronted with the reality that our apa was losing his independence and so were we. 

Silly Stories

In the afternoon when I called to check on him, I recounted the whole episode to him and he laughed. He was amazed that he had spent half his day without his teeth! He also laughed at me for suggesting that he was blaming a thief, como pues?  He just couldn’t  imagine the whole silly story was true. “I think that living without my teeth  would be quite difficult” He looked at me with eyes that said “Hay Rosalba,  the things you come up with.”

Dealing with Dementia

That’s how it was with dementia lurking about, without rhyme or reason. It was incredibly confusing. We faced dementia everyday, equipped with our little ‘tools’ like redirection, counting to ten and using reason to diffuse it, but still It crept in and caused disruption. As suddenly as slipped in it would leave and sometimes we were left trembling with checked and unchecked emociones.  That particular episode had worried and checked us, but after it was over and dad was fine, we laughed out loud at the preposterous visual of the tooth fairy quietly sneaking in and taking his teeth without leaving money 😅

La tercera edad can be very difficult, I’m so thankful that we were able to help my apa through it and that we ourselves came through it ok.

Gracias Te Damos Señor

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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.

My Dads daily prayer was a reminder to cling to gratitude and remember that our life is in His hands.

The Mourning Process

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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?