Tag Archives: dementia

July 5, 2012 · 9:37 pm

The clock test

When I found out my dad’s memory was declining, I thought about asking him to do the clock test. I had stumbled upon it online, and had found out it was commonly used to help diagnose dementia and/or cognitive decline. But before I had the chance, Dad got sick and ended up in the hospital.

Now my mom is the one that is sick, though her issue seems to be more physical than mental. But as she was being assessed for home health care today, they had her do the clock test.

She got most of the numbers right, but they started at about the one o’clock position and trailed around to about seven o’clock. Mom knew it wasn’t right and was disappointed she couldn’t figure out. My mom has always loved puzzles.

It broke my heart to see her struggle over a test an elementary school child could do.

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June 22, 2012 · 8:17 pm

The downside of small-town living

With my mom’s health in jeopardy now, I’m reflecting back on my dad’s healthcare from the time he started suffering from dementia. The conclusion I’ve come to is that it’s okay to retire in a small town as long as you are reasonably healthy. My dad had COPD and emphysema but those were easy enough to manage, since he didn’t have any major symptoms.

But once you need more specialized care, you may be in big trouble. Certainly it wouldn’t make economic sense for every small town in America to have a horde of specialists at your beck and call. But for many Americans (and I suspect this applies in other countries as well), the high cost of living in a big city is just not feasible. Nowadays, people worry about living too long, and blowing through their meager savings, even if they live on a tight budget like my parents. So small-town life seems appealing. It’s easier to navigate around a small town and become familiar with your surroundings and maybe some of your neighbors. The cost of living is lower. It’s a more relaxed way of life.

It all makes sense, until you get really sick. Then one discovers, like I did with Dad, that the only care center that would accept him is over an hour’s drive away. The hospital in town is mediocre at best, and can afford to be, as they are the only game in town. It becomes disheartening to deal with the indifferent medical staff at doctor’s offices and at the hospital. You want your loved one to have the best of care, and you know this isn’t it. But you can’t just pick them up and drop them in a big city and have the best and brightest doctors treat them. Well, I guess you could if you won the lottery or something. Mom already did that, but she didn’t win enough.

I know my Dad’s care was not as good as it could have been, and now I fear the same fate for my Mom. In a weird twist, I felt like Dad’s dementia may have protected him from some of the medical gaffes that he suffered. My mom’s mental state has taken a hit, but she’s much more aware of what’s going on than Dad was. I fear she will be more aware of suffering. Sometimes I get tired of the rat race of city life and long to run to the mountains. But there’s no such thing as an oasis. Wherever you go, death will find you.

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June 21, 2012 · 8:06 pm

Life is full of irony

So it will be awhile before I learn of Mom’s official diagnosis. I predict colon cancer. I hope I’m wrong about that.

But if it does turn out to be cancer, there will be such irony.

For years, before Dad got dementia, I worried about every time his cough worsened, or he had some vague pain somewhere. A smoker since he was 16, I was certain cancer would get him in the end. He was diagnosed with COPD and emphysema, a result of that smoking habit. But somehow, he dodged the cancer bullet. Of course, one could argue that dementia is the worse fate.

Yet my mom, who’s practically a vegetarian, who doesn’t drink and who smoked rarely for only a very brief period when it was trendy for women to do so, she may be the one who cancer nabs. Life truly is a crapshoot. I still believe that it’s better to play the odds and try to live a reasonably healthy lifestyle, but there are no guarantees that clean living will spare you from terrible diseases.

And if my Mom is diagnosed with a benign condition that can be corrected, it’s still a good wake-up call. Make good use of the time you have. We’re all borrowers when it comes to time left on this earth.

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June 8, 2012 · 8:39 pm

Alzheimer’s goggles

With the Japanese “diet goggles” being in the news this week, and reading a touching blog post about another dementia patient who’s experiencing visual disturbances, I couldn’t help but think about my Dad. I’ve written before about the strange things he would see as his dementia progressed, from black dogs to babies in the woods behind my parents’ house.

It makes me wonder, what do Alzheimer’s patients really see? My dad could look straight through my mom and ask where she was in the next breath. What did he really see? Did he forget that quickly, or did he see something else in place of my mom? He would think I was on one side of the room when I was on the other. When he looked at me, what did he actually see?

It’s almost like some kind of Halloween gag that never ends. A cruel virtual reality that’s created by the brain, not by technology.

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May 27, 2012 · 4:47 pm

Putting Dad out of his misery?

There is a New York magazine article by Michael Wolff that I first saw thanks to Eva’s blog. In the lengthy piece, Wolff talks about his mother’s decline in health, both physically and mentally. He talks about the physical, emotional and financial toll it takes on him and his siblings. He laments how modern technology has extended people’s lives in terms of years but not necessarily in terms of quality of life, and how we as a society are turning a blind eye to this brewing epidemic until it touches our family directly. He makes some good points, though some readers may be put-off by the fact that he and his family apparently have plenty of financial resources to provide the best around-the-clock care possible for their ailing mother. Wolff’s piece also seems more focused on his woes versus his mother, who seems to be a fascinating person experiencing a tragic ending to her life.

Ultimately though, Wolff ponders whether families should be able to decide when it is time for an ailing family member to die a death with dignity, versus lingering for years with a disease like Alzheimer’s. Call it what you will: euthanasia, death panels, etc. It’s obviously a very controversial issue.

My dad holding me as a baby. Such a happy photo.

I can understand both sides of the debate. I don’t feel that the last year of my dad’s life had much value. He wasn’t in a terrible state of pain or suffering the entire time, but between the medications and the dementia, he seemed incapable of feeling any kind of emotion. He was wearing diapers and living with strangers. The dad I knew would have hated the idea of it. But would he have preferred I slip him some medication that could have ended his suffering? Dad had a fear of death. Even if it were legal, and I had Dad’s best wishes (and his written approval) it still would be a heartwrenching decision to make. Having participated in two (quite legal) euthanasias this year for beloved pets, I’ve experienced firsthand how having the power to decide life or death comes with its own special pain. Ending one’s suffering does not eliminate or lessen the pain and grief that comes with losing a loved one.

There are no easy answers. We can try our best to ensure our loved ones die with dignity, but ultimately, how much control do we really have?

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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 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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