May 26, 2012 · 4:46 pm

Is it starting all over again?

My mom called the other night in a frantic state, saying her electricity had been turned off. I tried to calm her down and find out why. Apparently, some billing snafu, according to my mom. She claims she had paid the bill and had spoken to the power company earlier in the week and they said that she was right, and that she actually had a $5 credit. She thought all was well, but then she came home from running errands and boom, there was a note on the door saying her power had been cut off. She called the power company and paid the bill over the phone (that was supposedly already paid) but they told her they could not turn her electricity back on until the next day. Mom was beside herself, worrying about the stuff in the refrigerator and having to sit alone in the dark all night.

“Sometimes I just wish I was gone already,” my mom lamented. Now, my mom is certainly prone to histrionics. Admittedly, as I was just finishing up a 12-hour work day, I was both concerned and annoyed. I tried to calm her down, and suggested she stay in a hotel for the night and see if a friend could take her perishable goods to keep overnight. She was still upset when she hung up the phone abruptly. The next night I found out everything turned out well. She stayed in a hotel, had a friend put her food in his freezer, and her power was back on.

But still, I have to wonder, is it starting all over again?

With Dad, there were such small signs when his dementia began, they were easy to overlook. He had more trouble making the right change at the store, or wouldn’t complete all of the chores Mom would give to him. Dad wasn’t the type of guy to make lists for himself. He was not the highly organized machine that my mom is. Mom is obsessive-compulsive about making lists, keeping track of the bills and keeping detailed records of everything.

Of course now, I’m on high alert for any symptoms of dementia with Mom. As I’ve mentioned before, Mom has always been a bit eccentric, repeating herself frequently and talking about a dozen things at once. She’s been like that for as long as I can remember. But this bill snafu has me wondering if Mom is starting to lose control over her mind. Is it just a side effect of the stress and grief stemming from my father’s death? Or was she actually right and the utility company messed up?

Just like it was with my father, there is an uneasiness that I feel in my heart again, a voice whispering in the back of my mind. I hope, I so hope I’m wrong.

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May 25, 2012 · 5:10 pm

Reminders of Dad

Holidays are always tough for those who have recently lost a loved one. My dad was not big on holidays, so it should in theory be easier for me, because there weren’t a lot of sentimental memories tied to holidays spent with my dad.

But Hallmark and company make sure to capitalize on every holiday, including Father’s Day. Every time I go to the grocery store, I’m bombarded by the Father’s Day display and the cards with boats and tools and sports on them. It made me wince, which surprised me, because the commercialization of holidays annoys me. It just made me think that this year, I won’t have to struggle with picking out a Father’s Day card. It was always a pain, because Dad was not a fisherman, or a mechanic or a sports guy. He was just Dad. I usually ended up picking out some nature scene, and all I did was sign it. I never wrote a meaningful message in any card I sent Dad. I regret that now, but at the time, it would have seemed awkward because we did not have a close-knit relationship.

Maybe I will still buy Dad a card this year, and write the message I should have written all of those years ago when he was alive and dementia-free.

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May 24, 2012 · 4:26 pm

Is that a lot of money?

I’ve mentioned before that my mom did have a stroke of luck and won a $100,000 on a scratch-off lottery ticket. Sadly, the winnings came after my dad was already fairly well-advanced in his dementia. We are very grateful for the extra funds that helped pay for his last year of care, however.

But when Mom showed Dad the winning ticket, and told him that she had won a $100,000, she says Dad looked at her with a wide-eye, child’s like innocence and asked, “Is that a lot of money?”

Mom answered, “To us it is.”

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May 23, 2012 · 2:20 pm

Dad’s fate decided by bureaucracy

Medicare and the rest of the government regulations that impact elderly care in this country didn’t give my father dementia, but they certainly played a major role in deciding how the end of his life played out. My Demented Mom posted a good blog entry about how U.S. senators are finally investigating the misuse of antipsychotics in the elderly that are in institutionalized care. It’s about time. I’ve written about the subject multiple times, about how Dad resembled a zombie and how indifferent the ER staff were about possible drug interactions. Sadly, most who have dealt with dementia in their families have these stories to tell.

I’m still reading this book I’ve written about before, a collection of end-of-life essays. I just finished one that really struck home hard, about a sweet lady named Margaret who had a stroke and went through rehab as approved by Medicare. Unfortunately, she just couldn’t make progress during the short rehabilitation period, though she did try. But after her rehab allotment time was up, Medicare forbid any further treatments, because she was not a good candidate for improvement. So she never was able to return home, and instead declined rapidly in the nursing home, despite her loving family trying to visit her as much as they could. (Like my family, they didn’t have the funds to hire 24-7 care for her at home.) What had once been a delightful, talented woman who loved to paint became the typical defeated nursing home patient, parked in a wheelchair with head drooping, alive in physical form only.

And one could argue that bureaucratic rules led to her early demise. Government regulations stole her dignity, and ultimately, her life.

I feel the same way about my father. He also had rehab a couple of times, for the allotted days that were covered by Medicare. But if he had been approved for a longer period of time, maybe he could have gained enough physical strength back to return home, where Mom could have set up home care. Instead, time was up, Dad couldn’t navigate stairs, and away he was whisked to a facility over an hour’s drive from my mom.

Now, I’m the practical sort and I know that programs have to have funding limits. I’m not a fan of tax increases. And yes, families shouldn’t be given false hope by their loved ones undergoing treatments that are futile. I don’t have the solutions, but at least the conversation is beginning.

But the elderly deserve to be treated better at the end of their lives. So many of them fought for freedom, worked hard to support their families, sacrificed in ways we will never know … we can’t continue to discard them like a broken-down car, a heap of junk pushed off to the side of the road that we try to avert our eyes from as we hurry on with our busy lives.

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May 22, 2012 · 3:50 pm

Ruining dessert for my parents

I had a bit of a struggle as a child learning to go to the bathroom on my own. I remember I had one of those musical training toilets which sat in the hallway next to the bathroom in our apartment and how proud Mom was when I finally “tinkled” on my own and in the right spot. Dad tried to keep his distance from any toilet training duties. (Who could blame him!)

It was the “other” kind of bathroom visit, shall we say, that I just couldn’t handle on my own. I guess I lacked the coordination to wipe properly (or maybe I just found it icky!) I was about three or four at the time, so I guess I should give myself a break.

Mom would make a nice Saturday night supper and we would all enjoy it. I had pretty good manners at the table and was never trouble in that sense.

But then dessert would come. I would wolf mine down and then asked to be excused … yes, you can guess where to.

Mom could count it down on the clock how long it would take. “Mommy! I need you!” Funny, how I never asked for Dad in those situations. I’m sure he was relieved.

So Mom would help me out in the bathroom. A common thing a mother does for her child.

But Mom says it happened every time we had chocolate pudding!

Now I know why Dad stuck to vanilla-flavored desserts.

(To Mom’s credit, she tried to keep a good sense of humor while being a bathroom assistant for me as a child and for Dad as he became child-like with dementia.)

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May 21, 2012 · 3:27 pm

It’s the little things that matter the most

The Memories Project has made me realize that it’s all of the small memories, the everyday happenings, that often have the most meaning in one’s life. I was reminded of this again last night when I was talking to my mom. She’s still lamenting that she will never get to sleep next to Dad again, and snuggle up to his warm body. Memories are so important, but recalling a particular Christmas or summer vacation can’t give my mom what she needs most right now, which is simple companionship, the warmth of another living human being.

It’s a good life lesson. As a society, we spend so much time and effort trying to catch all of these special moments, the birthdays, anniversaries and family vacations. We take photos, videos, blog about them, post stories on Facebook and updates on Twitter. And that’s not a bad thing. What I hear from other bloggers and what I’ve experienced myself is that we are missing vital pieces of our family’s story, whether it’s a photograph that has no date or names on the back of it, or a letter that’s missing a page. With all of the electronic archiving that goes on in our lives now, I’m guessing it will be virtually impossible to lose record of those big moments in your life.

I tried hard over the last year of my father’s life to remember the details of each awkward, cryptic conversation I had with him, because I feared each one might be the last. But now, what’s important to me is the memory of holding my Dad’s hand at the care center and later at the hospital, and feeling him squeeze back. No words were necessary to convey the feelings and emotions being exchanged.

Those smaller moments that you don’t feel are worth recording right now? That may be exactly what you end up missing down the road. So try to appreciate both the ordinary and special moments with your loved ones.

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May 20, 2012 · 3:38 pm

Hey, this Coke tastes like onions!

As I’ve mentioned before, most of our restaurant visits as a family were to fast food places, but occasionally, we would go somewhere a bit nicer, or least to a place that had cloth napkins. The Red Chile was a family favorite. When we were in an Italian mood, we would head to Vito’s. I can’t determine if this place still exists as there are two restaurants, Vito’s and Vito’s Pizza, listed online in the L.A. area. The place we went to was a modest, family-run restaurant with the traditional red and white checkered tablecloths. I remember it being a pretty far drive, so we didn’t go very often, as Dad didn’t like to drive in unfamiliar areas that had heavy traffic. Mom loved the eggplant parmesan, while Dad usually had the meatball sandwich. I was very small, and there was no kid’s menu, so I munched on meatballs and garlic bread. (Wow, what a healthy dinner!)

On this one particular visit which stands out in my mind, I ordered a Coke as usual. It was a hot day and I eagerly peeled off the paper wrapping on the straw and took a big sip. It tasted very funny. I couldn’t quite identify it at first, but Dad noticed my wrinkled nose. I told my parents that my soda didn’t taste right. My mom thought I was just being picky. Dad offered to order me another one (probably to get me to stop whining about it) but Mom didn’t want to make a scene. I went into tantrum mode, refusing to drink the soda. At some point, we figured out it was the ice cubes! They must have been stored in an area with something made with lots of onions and they had absorbed the distinct flavor.

I received a new soda, without ice. Our Italian dining adventure went on without any further issues. I can’t remember when or why we stopped going to this particular restaurant, but I still have the fuzzy memories and that taste of onion-flavored Coke to savor.

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May 19, 2012 · 2:45 pm

Dad’s trouble with Talwin

Last week, I wrote about how Dad ruined Mom’s first Mother’s Day by landing in the hospital for foot surgery. He ended up in a tremendous amount of pain from the procedure.

In walked Talwin. It became my dad’s new best friend and my mom’s worst nightmare.

Talwin (Pentazocine) is intended for moderate to severe pain and actually had been tested by several legitimate organizations in the 1960’s which had lauded the drug for its non-addictive properties. Well, Dad and some heroin junkies looking for a cheap fix proved them wrong. “Ts and Blues” was all the rage briefly circa 1978. Some enterprising heroin addicts had found that by crushing up Talwin along with an over-the-counter antihistamine (tripelennamine—the pills were blue) and injecting it, they could produce a high similar to heroin. Dad was terrified of needles, so I’m sure he stuck with the pill form.

Mom swears Talwin was banned at some point. From my research, it seems another drug, naloxone, was added to Talwin to block the drug’s use recreationally, which caused its illicit use to plummet, therefore the drug remains legal. Perhaps Mom is just having some wishful thinking. According to Mom, while Dad was in the woozy grasps of Talwin, he somehow managed to work and pay the bills but he would park the car in the middle of the street. When he was at home, he would sleep. And sleep some more.

Eventually, he ran out of any refills he might have been given for his recovery from foot surgery. He went with Mom to the doctor to beg for more pills. The doctor refused. Dad tried to wheedle some more drugs out of the doctor, but the doctor just looked over at Mom, who said nothing but nodded to show she supported the doctor’s decision. Dad had Mom wait outside and he went back in for a final plea. Rejected again, he walked out, angry and in need of some T’s.

Ultimately, he switched from T’s to V’s, as in Valium, until he gave up his pill popping phase for good. Well, that is, until he was fed a steady stream of mind-altering drugs in the care center at the end of his life. Of course, pill addiction now has reached epidemic levels in the U.S. We were fortunate as a family that Dad was able to escape from the cruel jaws of addiction back in the 1970’s.

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May 18, 2012 · 3:12 pm

Dad takes me to awards night

In high school I was ostracized by my classmates due to my own stupidity. As an only child, I was used to spending a lot of time alone so it didn’t bother me too much. I avoided all of the social activities that most high schoolers engage in, like dances and football games. I never told my parents about my social isolation at school, so they just assumed everything was fine. In my senior year of high school, there was a special awards program, where college scholarships and such were being handed out. I was “strongly encouraged” to attend by my academic advisor. I dreaded it with every fiber of my being. My mom found out about the presentation and wanted to go. Dad had to take the night off from his security guard job to take us to the event, which was being held in the auditorium of a local hotel. I felt trapped. Dad had gone out of his way to get the night off, now I would be forced to go.

As it turned out, Mom wasn’t feeling well that day. I can’t remember if it was menopause-related or just some kind of flu. Suddenly, I was the concerned and sympathetic teenage daughter, assuring Mom I would not be upset if she didn’t attend. She mercifully backed out of the event. I convinced Dad to just drop me off at the hotel. We were in the distant stage of our relationship and I’m guessing he was more than relieved not to have to sit through some boring school function. I’m not sure what he did during the event, as it was a couple of hours long, but I’m sure he went through plenty of cigarettes!

I remember feeling very alone and very awkward. Luckily, I was past that stage where Mom could force me to wear a dress, but I was still in dressier clothes and shoes than I was accustomed to. I remember standing in a corner, near a tall plant, trying to hide myself from everyone else. I remember staring out the window, which looked out upon the valet and front entrance. I watched my classmates arriving with their parents, some happy, some annoyed, some indifferent. I remember feeling very far removed from it all.

I don’t know why I didn’t consider ditching the event altogether. I guess I was a pretty honest kid, and if my mom found out I had not attended, she would be mad.

Finally, the ceremony began. I don’t remember the details, except being mortified at hearing my name called as a scholarship winner. It wasn’t any full-tuition thing, I think it was $500 or a $1000, but I was the only recipient. I focused on making it up the steps to the stage, and being polite to the administrator who handed me the certificate. I couldn’t wait to escape the stage and slink back to my seat.

Then it was over. This was before cellphones, so I guess I had told Dad to meet me at a certain time. I found him lingering outside, finishing up a cigarette. Normally, I hated being seen with my parents, just like most teenagers. But that night I was glad Dad was there. I told Dad about my scholarship and he was genuinely proud, saying how he had always wanted to continue his schooling but never had the opportunity. It was a nice father-daughter moment, one I didn’t appreciate at the time but now treasure as a loving memory.

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May 17, 2012 · 3:16 pm

What the National Alzheimer’s Plan means to me

With the Obama administration releasing the National Alzheimer’s plan this week, everyone that is an Alzheimer’s advocate is being encouraged to give their opinions about the plan and share their stories. Obviously, through this blog, The Memories Project, I’ve been telling my father’s story all year long.

I think the plan is a good first step, but I am concerned about what looks good on paper may be difficult to execute in reality. I hope I am wrong for the millions of those with Alzheimer’s and their loved ones that care for them. For those of us who have already lost someone to this terrible disease, the plan won’t bring our loved ones back, but we can still participate in the battle.

To me, public education and care services are two of the most important aspects of the plan that must be addressed immediately. Of course, I support research and sincerely hope that one day there is a cure and/or a vaccine. But even a delay of onset of symptoms could preserve the quality of life of so many people. But we need to educate people now, not just about the disease itself, but about preparing for end-of-life issues. No one wants to talk about these things, but we must get over this fear of death. My mom is just now talking to a lawyer about several IRA’s that are tied to a bank in California that my Dad set up decades ago. Nearly five months after my father’s death, and the paperwork is nowhere near being completed.

We have to create better care options for those with Alzheimer’s and dementia. Specialized care is necessary, but there are simply not enough options for those that live outside of large metropolitan settings like my parents did. Of course, there would need to be a huge increase in the amount of care workers and volunteers to provide these extra services. Maybe we need to get creative, and forgive a portion of college loan debt for those willing to volunteer their time for Alzheimer’s care. Young people’s spirits can offer a tremendous lift to those with dementia. Similar programs already exist, but maybe they could be expanded. The long-term unemployed could also be included to build up a corps of caregivers.

One of the aspects of my family’s experience with Alzheimer’s that pains me the most is the fact that my mom worked so hard to get my dad moved to a facility that was near her, but when there was finally a bed opening, he was too sick by that point to enjoy it. She could walk to the new care center, but Dad was so sick he ended up in the hospital within days and never returned to the center. People shouldn’t feel guilty about placing their loved ones in care centers, but they also should have convenient access to visit their lifelong partners. Alzheimer’s is a burden enough without the pain that a physical separation can cause.

Here’s hoping the National Alzheimer’s Plan will increase Alzheimer’s awareness and offer relief for those impacted by the disease.

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