Category Archives: Memories

May 10, 2012 · 1:15 pm

Dad’s fear of death

I believe I’ve mentioned before on this blog that my dad was afraid of dying. I never really explored the specific reasons why with him, but I do know he was afraid of suffocating and would have terrible nightmares around that theme.

Well, I hope Dad is okay as ashes in a container. I haven’t sealed the lid on my container, just in case he needs some more space!

But on a more serious note, his deep-seated fear of death led to a stony silence about any end-of-life discussions. My mom, ever the optimist, was more than willing to go along with him and pretend that the “d-word” was never going to happen. Sadly, this happens in a lot of families, and it’s usually the children or other relatives that are serving as caregivers that have to deal with the consequences.

I’m not a fan of legislation that tells people what to do, but I almost wish there was a legal requirement for people to indicate their basic end-of-life wishes in writing. Of course, these decisions would no doubt change over time, and the document would have to be updated, which would no doubt be a mess in some situations. Bureaucracy can be a big ugly beast, but the flip side is this void of knowledge, and a desperate family member forced to make life or death decisions for their loved one.

It was excruciating to watch my mom, who was in charge of making my dad’s health decisions, keep avoiding the DNR request, despite pleas from me and the medical staff. I know in her heart she felt she was doing the right thing, by giving Dad every chance possible to “recover.” But as those who have dealt with Alzheimer’s in their families know, that recovery is limited at best.

I say the above even though I’m not entirely sure what Dad would have wanted at the end of his life, if he had been in his right mind. Would he have been as afraid of the DNR order as death itself? Perhaps. Would he have wanted the broken ribs that came with the CPR that was given to him on the day he died? No, of course not, no one would.

I think Dad was most fearful of the unknown that comes with death, despite his religious beliefs. Did Alzheimer’s erase that fear or add to it? I wish I knew.

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May 9, 2012 · 1:48 pm

Dad’s prayer to me

Dad and I had very few one-on-one conversations with each other. My mom usually led the family discussions, and my dad would just kind of hang out in the background. Over the years, he learned to tune out my mom quite effectively! (Mom loves to talk and doesn’t necessarily seek feedback, so that’s why their relationship worked.)

Years ago, before Dad had dementia, I told my parents that I had tested as gluten intolerant and had to go on a gluten-free diet permanently. My mom had a ton of questions, but my dad didn’t have much of a reaction either way. Not a big deal, Mom was the cook of the family.

Years later, when Dad was at the moderate level of dementia, my mom gave me the following prayer request. It had been an extremely difficult day (which I will explain in another post) and my mom pulled this card out of her purse and quietly said, “I thought you would want this.”


It was one of those Catholic prayer request cards. Dad had filled it out, but never mailed it. I’m glad he didn’t. It’s a bit difficult to read, so here’s what it says:

“My daughter Joy who has an eating problem for several years now. She is restricted to a diet where she has to avoid wheat in her food. Under no circumstances can she eat food with wheat in it. Your prayers will be appreciated.”

Wow. I was blown away that Dad had been paying attention all those years ago. My mom and I shared a sad smile across the table as Dad sat next to us, oblivious to the emotions filling the room.

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May 8, 2012 · 1:02 pm

Dad’s love affair with Costa Rica

Dad threatened many times when I was a kid to move the family to Costa Rica. His love for the Central American country was based upon secondhand knowledge and photos and stories from books and magazines. One of his co-workers had traveled to Costa Rica and enthralled Dad with tales of a cheap cost of living and the locals’ love of Americans (and their American dollars I’m sure, this was when the dollar was still pretty strong.) He told Dad that most of the locals spoke English and you could get a huge house on the beach for cheaper than renting in California.

Most are all of this may have been true. But Mom and I were not too worried about having to pack up and leave the country. My dad’s dreams of Costa Rica were more a way for him to battle his frustration at the high cost of living and unemployment woes facing him in California in the mid-1980’s. I also think part of him cherished a romantic ideal of living the life of some bohemian writer or artist in a tropical paradise. Maybe his Costa Rica dreams helped him survive all of those years living in boring suburbia!

Many kids would have thought a move to a foreign land would be exciting, but I was not the type of kid with an adventurous spirit. I always backed my mom up when she would shoot down Dad’s occasional “let’s move to Costa Rica” campaigns.

How different our lives would have been if we had made a move like that!

I hope he was able to escape to the sunny beaches of Costa Rica at least in his mind as his mental and physical health declined.

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May 7, 2012 · 1:16 pm

Trying to see past the Alzheimer’s

I was reading a fascinating article today about a program at Harvard that connects college students with those suffering from Alzheimer’s in nursing homes. The students visit their “buddy” each week, and the unique part of the program is that it tries to connect resident and student by interest. So one student spends time talking about science with a resident who loves the same subject. It sounds like a neat program. The student that founded the program said, “When you have a family member with dementia, you know who they were, so you really see the decline and what’s not there. That’s one of the cool things about this program. We get to see what is still there.”

This is one image of my father I like to envision when I think of him now, instead of how he looked when he was dying.

This is so true. It’s so difficult as a family caregiver to ignore the pieces of your loved one that become lost to Alzheimer’s, instead of focusing on the core of the person who still remains. I remember different nurses at different hospitals commenting on my dad, “I’d love to see photos of your dad when he was younger. You can tell he was a handsome guy.” When I first heard this, I was shocked. All I could see was the pitiful, emaciated, confused man curled up in the hospital bed. But the nurses had the wisdom to see beyond the present, and imagine the past of a stranger they were not familiar with. They could peel off that layer of dementia and sickness and see who was really underneath. It’s a gift that often eludes those of us that are family members.

Of course, it’s unlikely that a family member can ever be as objective as a stranger can be in this situation. We should not feel guilty for acknowledging the loss and the damage that this disease causes. But it is worth taking a moment to step back and try to see our afflicted loved ones through the eyes of a kind stranger, instead of through the warped lens of dementia.

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May 6, 2012 · 1:51 pm

Currency that can’t be cashed

I’ve been all over Atlanta trying to cash in these pieces of foreign currency that Dad had stashed away in one of his many wallets. The bills came in holiday cards from his family in Ireland, who always told him to “have a wee drink on them.” It was a family tradition. When I was a girl, they would include money in my birthday cards. (No, they didn’t tell me to have a wee drink, ha.) Before Dad had dementia, he was prompt about getting the foreign currency cashed.

But once the dementia took over, he would forget to even open the cards his family sent him. His sisters revealed how concerned they had been when my mom called his family to tell them he was in the hospital. They had not been receiving responses back from Dad. In addition to writing, Dad had lost interest in calling them on the phone as the dementia progressed.

My mom asked for me to help out with these last few bills that her local bank could not convert for her. So I went to the branch of my bank in my neighborhood, and they told me I needed to go to another location. I went to a branch in what is known as the “financial center” of town where I work, and they directed me to an American Express office that handled currency conversions. So on my lunch break, I walked down there with this envelope that I’ve been carrying around for months.

The clerk only had to take a momentary glance. “Sorry, those are too old to cash here. If you ever go to Europe, you might be able to get them converted there.”

Well, that’s not happening any time soon, so back the envelope comes with me. I don’t care whether I ever get them cashed or not, it’s just another sad reminder of how dementia robs one of completing simple tasks and simple pleasures, like enjoying a token of love from your family. It’s especially ironic since Dad, like many Alzheimer’s patients, became obsessed with money, always asking about his $20, yet he had a stack of foreign currency long forgotten in his nightstand drawer.

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May 5, 2012 · 2:07 pm

Dad calling Mom “Mommy”

My parents are/were a weird lot. For example, when I was a little girl, my dad would call my mom “Mommy.” This would bring out a jealous rage in me.

“She’s my mommy, not your mommy,” I would pout.

As my parents became seniors, and my dad battled dementia, they fell back into this habit. My mom even referred to Dad as “Daddy” at the hospital, earning some raised eyebrows from the nurses. She defended herself by calling it a term of endearment.

I guess it was to her, especially after taking care of my dad like a child for the past few years. By that point, he was less a husband and more a difficult child who would never grow up.

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May 4, 2012 · 1:19 pm

Having a case of the caregiver’s guilt

I’m reading a great book right now, a collection of essays about the dying process called, “At the End of Life: True Stories About How We Die.” Yes, it’s depressing but there’s also so much in there I can relate to. One particular essay that is haunting me is by a young resident who wrote about the night she lost three patients. One of them was an old man with dementia, who was listed as “full code” despite being in advanced renal failure and suffering from dementia. He had not had any family members visit him. He died with only the hospital staff around him, after they embarked upon an all-out assault on his body to save him in what they knew was a futile but legally necessary procedure.

It seems like there are many elderly patients that die in hospitals without family or friends by their bedside. Sadly, my dad joined this statistic when he passed away.

Certainly this is tragic, though just like when people judge families that put their loved one in a nursing home, there’s more to it beneath the surface.

I remember the first time Dad was near death, and being insulted when the doctor asked if I knew my father was in the hospital. He had been there about 4-5 days by then. My mom had been calling daily, if not twice a day, to get his status, while she was preparing to make the long, difficult trek to the hospital. My mom doesn’t drive and my parents’ car was taken to the junkyard when Dad stopped driving. Mom doesn’t have any nearby relatives or close friends and transportation options are very limited. It would have taken my mom almost 12 hours to get to Albuquerque on the Greyhound bus! So from Ruidoso, NM, she had to find a shuttle service that would take her to Albuquerque, which is over three hours away. My mom had to make sure the bills were paid and everything was in order before leaving home, because she had no idea how long she was going to be in Albuquerque. So understandably, it took a few days for her to get to the hospital.

Dad’s final home, but I have never stepped foot in it.

I had been calling daily, but I was all the way in Atlanta, and was knee-deep in a big work project. Obviously, my dad was much more important than work, but I also knew by then that there could be ups-and-downs in his health. I had been preparing myself for his death over the past year, but it was so hard to know if this was the moment that I needed to be by his bedside. There was also the $1000 last-minute flight price tag to contend with.

I ended up flying out there and it ended up being a false alarm. Still, it was the last time I had the opportunity to see my Dad alive, so I’m glad I made the trip.

But it’s the last month of my dad’s life that’s been gnawing away at me. For all of December 2011, he had not a single visitor at the skilled nursing facility that became his final home. My mom was preparing to visit him over Christmas when he passed away. His dementia was advanced at this point, and he didn’t speak much, but still, I wonder if some part of him yearned for company. By that point, I had already filed for FMLA (though eventually my application was denied.) But I wish now I had taken that time off to go visit Dad. What did I miss out on by not being by my father’s side during the last days of his life? I let finances and work responsibilities rule my decision-making instead of my heart. For once, I should have gone with my heart.

It is a deep regret, knowing that Dad died around strangers, though by that point, I was a stranger to him as well. These are moments and decisions you can never alter. You try to do your best, but ultimately, you have to live with the consequences.

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May 3, 2012 · 1:25 pm

Personal signs on the nursing home door

I’m sure many nursing homes have signs of some sort to identify which resident lives in which room. This was true of the nursing home my Dad lived at the last year of his life. I thought I had taken a photo at some point but I can’t find it. I was struck by the child-like quality the signs had. They identified where the resident was born, then their favorite color, their favorite food, etc. I think it included family information, like how many kids/grandkids they had and I don’t remember what else. The signs reminded me of being in kindergarten, and going through various exercises to get to know your classmates.

I’ve been thinking about those signs lately, as I’m writing a a brief autobiographical blurb for a writing project I’m working on. Trying to figure out the important details to include, and what to kick out, is exhausting.

At some point in our lives, it seems there are so many details that seem crucial for others to know, but at the beginning and the end, it seems to come down to colors and food and family.

Maybe those are the important things after all.

(The thing that bothered me about my dad’s sign is that a lot of the information was incorrect. They got his hometown of Belfast correct, but his favorite color wasn’t blue and spaghetti wasn’t his favorite food, it was fish.)

It was just another way Alzheimer’s chipped away at my Dad’s identity.

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May 2, 2012 · 1:03 pm

Getting lost at the fast food restaurant

I was thinking about my dad’s wandering escapades recently, and remembering the one that took place at McDonald’s. Poor Mom couldn’t even go to the restroom in peace without Dad taking off. The worst thing about that incident was that Mom went looking for him inside and outside the restaurant, and couldn’t find him. So she called the police, which she hated to do but was the right thing in that situation. The police responded and found Dad. He was standing by the drive-thru.

This made me think about an incident that took place when I was a kid, probably when I was in junior high. It was our traditional weekend trek to a fast food restaurant. This time it was Arby’s. I loved the curly fries and the Jamocha shake, but could take or leave the sandwich. Well, I liked the Horsey sauce, or maybe it was the name that I liked saying more than anything. Anyways, we were done with our meal and Mom and I headed to the restroom while Dad headed out to smoke. We had done this same scenario a hundred times before.

The scene of Dad's "lost and found" experience when he had dementia.

By the time Mom and I would be finished, Dad would be done with his smoke and in the car waiting for us. But not this time.

Dad was definitely not in the car and it was still locked. I walked around the building and looked for him, but no signs of Dad. Maybe the bathroom? Dad was known for his stomach troubles, which could come on suddenly, so we decided to give him a bit of time. The minutes ticked by slowly as we waited by the car. (Long before the days of smartphones, where you could kill time by playing a round or two of Angry Birds!) At least 10-15 minutes passed, and no sign of Dad. Mom started to get worried so we went back inside the restaurant and asked a male employee if they could check the men’s bathroom for us. They did, but no sign of Dad.

Dad wasn’t a likely kidnapping target, but we were starting to run out of ideas. Finally, as if by magic, Dad appeared, walking over from the tire store next door. Why in the world he had a sudden, urgent desire to look at tires I’ll never know. Mom scolded him for making us worry but he just shrugged it off.

I don’t remember this happening again until Dad started showing signs of dementia. It was just a strange, momentary glimpse of what was to come.

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May 1, 2012 · 11:54 am

Nursing home musings

If you haven’t read Ted Sutton’s heartbreaking, beautiful story about his mother on Huffington Post, entitled “Final Curtain: A Mother’s Day Love Story”, you should, but make sure to have the tissues handy.

There are several points in his piece that I’m sure most of us that have dealt with Alzheimer’s or dementia in our family can relate to. For example, I related to the difficulty of finding your loved one at the nursing home. So often, residents end up being dressed in clothes that are not their own, and so often many are heavily medicated and slumped over in chairs. On my visits, I could usually find Dad because he was ambling about instead of just sitting down like most of the residents. This of course was good and bad, because while it was good he was ambulatory his unsteady gait led to several falls. Sutton’s piece touches upon this sad reality as well.

The last photograph of dad and I together, July 2011, just before he attempted to sing "Happy Birthday" to me.

The difficult of phone communication with Alzheimer’s patients also struck a chord with me. This was so true with my father. I hated calling the nursing home and trying to talk to him because it seemed like a difficult task for him and that he didn’t enjoy it. My mom insisted on calling him almost every night, which was more for her well-being than his, though I do hope the sound of a familiar voice gave him some comfort. But my mom would often comment that she would “lose connection” with Dad, as he would drop the phone and wander off, or just forget that he was supposed to talk into the receiver.

And the touching part where Sutton sings with his mother is absolutely beautiful. It makes me think of my father’s last pitiful attempt at singing “Happy Birthday” to me, and how he was barely awake as he moved his lips along with my mom, who tried to fill in for him. My parents would always make a big production out of singing “Happy Birthday” to me over the phone, since as an adult, I never had the chance to spend my birthday with them.

So thanks to Ted Sutton for sharing such an amazing, heart-wrenching, and beautifully-written piece with the world. I’m sure it will resonate loudly with many caregivers throughout the world. Sutton is also working on a book about his mother. I can’t wait to read it.

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