Tag Archives: Alzheimer’s

August 1, 2012 · 10:50 pm

What makes one give up?

With my dad, Alzheimer’s robbed him of the will to fight back. I watched my dad pitifully try to hang on to his personality, only to return a few months later and see a drugged-up zombie in his place. It was heartbreaking, but I’m not sure if those with dementia realize when they are crossing over to the dark side, so to speak.

With my mom, her personality has survived the major surgery, the setbacks and the recovery, and even the nursing home stay. But I know that Mom often puts on a cheery front for the medical staff. They all compliment her on what a great patient she is. And that is true, she’s very good about following orders and not complaining.

But with me, the tears come readily.

I went to visit her local bank the other day to let the manager know about Mom. The manager had helped my mom with a lot of financial issues, and she was sad to hear about Mom. She said that she wondered if at some point, my mom would just give up. “She misses your dad so much, and she’s so lonely.”

Mom already tells me just about every day about how sorry she is for being such a burden and that it would be better if she just let go.

And the honest truth is, it might be.

But then again, the nurse that tended to my mom through a special procedure today said she can tell what kind of spirits patients have just by working with them for a few minutes. She said, “I can tell your mom is a great person.”

And that’s the honest truth as well.

So that makes things really tricky. I don’t want my good-hearted mom to suffer needlessly, but the world could use a bit of her sweet spirit for as long as possible.

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June 20, 2012 · 7:09 pm

Six months since Dad died

Today is the longest day of the year, in more ways than one for me. On a positive note, while I did not actively participate, I fully support all of those who took part in The Longest Day event sponsored by The Alzheimer’s Association. The stories are so inspiring.

On a sadder note, today is the six month anniversary of my father’s death. It’s hard to believe so much time has passed already. I still think about him often, and not just when I’m writing on this blog. There are still regrets and pangs of guilt to work through.

My parents long ago, before disease caught up to them.

But now, the bad news. My mom has been very ill for over a week now. Symptoms include vomiting (with brown flecks), shortness of breath, bloating and distended stomach, shortness of breath, fatigue, loss of appetite and extreme heartburn. My mom has been in very good health (other than depression and grief over Dad) so I’ve been very concerned. Finally she had some tests done, and per my mom, the doctor said there was a problem with her colon. Since the tests were just xrays, I guess the C-word couldn’t be used until Mom gets a colonoscopy, but of course, my mind is racing to the likely conclusion that she has colon cancer. I hope it turns out to be something more treatable, but it looks like surgery may be in her future.

What’s most troubling is that she couldn’t get an appointment to see a specialist until July 12th. Mom hasn’t been able to keep any food down for over a week. She says her regular doctor is supposed to follow up with her regarding nutrition. I hope so!

(I tried calling her doctor but Mom hasn’t filled out the form that allows me to get information so I’m barred per HIPAA from knowing anything. I’m all for privacy rights but at the moment it’s frustrating.)

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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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June 7, 2012 · 8:23 pm

If coffee could prevent Alzheimer’s

I was reading today about a study that suggested drinking coffee could delay Alzheimer’s. My first thought after reading the article was that it didn’t do my dad much good, and he drank coffee morning, noon and night.

But then I thought about it in another way. Wonder if all of my dad’s coffee drinking (I did a rough estimate based on his habits and age and estimated over 85,000 cups in his lifetime) delayed the disease by years? Dad was in his mid-seventies when he started to show signs of dementia. Maybe his love of coffee (he would drink it with anything, pizza, pasta, you name it) held off the crumbling of his mind for a few years?

Unfortunately, there’s no way to know and hindsight is 20/20. If we knew what was to come, and that his coffee habit was keeping Alzheimer’s at bay for a few years, perhaps we would have lived our lives differently. Sadly, I doubt we would have changed a thing.

Other than a cigarette, a cup of coffee is the thing that reminds me of my dad the most. Even the last time I saw him alive, he asked for a cup of coffee.

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June 5, 2012 · 8:43 pm

Being quiet in the tunnel

As a kid, one of my favorite family rituals was the rule about being quiet when we drove through tunnels. I don’t know who or why we started this rule, but I was adamant about everyone obeying it.

Usually, my parents would oblige. My mom would usually hush Dad up as we approached the tunnel, then I would let out a big “Shhh!” just as the light faded as we entered the dark tunnel. I got such a kick out of the silence and the darkness.

I remember one time, Dad started whispering while we were in the tunnel, just to get a rise out of me. I got really steamed but Dad tried to play Mr. Innocent, saying he was only whispering, and not really talking. I remember pouting for quite awhile that day!

I had not thought about the “tunnel rule” in ages but I was reading something recently that described Alzheimer’s as entering a tunnel that you never come out of. It is an accurate description. The disease is like a long tunnel that gets darker and darker, forcing you to stumble around lost and frightened, with no end in sight.

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June 1, 2012 · 6:59 pm

Trying to escape old age

Like a lot of people, my parents had their daily regimen of vitamins. As far back as I can remember, there was a tiny cup of various capsules, some hard and chalky, others clear and filled with liquid. As a child, the colors and textures fascinated me. My parents were pretty lucky in that they were not dealing with any chronic diseases that required daily medication. These were simply supplements, vitamins and cod liver oil and whatever else my mom read was good for you. Dad had a thing about choking, and he would balk at the horse pills Mom would offer up sometimes. He would demand the ones that were coated in something smooth. He also would complain about the fragrant belches that were a side effect of the garlic capsules.

As for me, I had one tiny chewable vitamin each day to take. My favorites were the Flintstones and the Bugs Bunny varieties. I can still remember the distinct taste those vitamins had, kind of like a sweet tart with a mineral aftertaste.

Who knows if those handful of pills my parents swallowed daily did any good. Perhaps they helped keep my dad alive all the way to 79 years of age, even if his mind failed him the last few years. It is pretty impressive he dodged both cancer and heart issues despite his almost lifelong smoking habit.

Mom still has nice skin, is at a healthy weight and only takes medication now once a week for her osteoporosis. Perhaps the supplements have kept her healthy for the most part as well?

I’m on the fence about all of those supplements. Plus, just like Dad, I’m not a big fan of swallowing pills. I do take acidophilus pills daily and a multivitamin when I remember. And funny enough, I take an allergen-free gummy vitamin, because it’s easier for me to digest. So it’s like I’m a kid all over again.

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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 15, 2012 · 2:59 pm

Dad visit to the lake

There’s been a lot of talk in the news lately about a variety of programs that can help improve the quality of life of Alzheimer’s patients, including music, storytelling, games and dolls. I know they offered some kinds of exercise and social programs at the memory care facility Dad was at, but Dad was always the loner type. For example, I can’t imagine him sitting in a circle and batting a ball around, an activity that many dementia patients seem to take great joy in. Sure, Alzheimer’s changes people’s personality, but I could still see Dad’s old self underneath the disease until the very end.

He must have been so bored and lonely, pacing up and down the hallways of the memory care facility, with only my mom’s bi-monthly visits to break up the monotony.

Copyright: New Mexico State Parks Division

But just about four months or so before he died, there was a field trip for the memory care residents. They went to the Bottomless Lakes State Park that’s a short drive from Roswell, NM. It seems like a beautiful, peaceful place. I don’t know how much Dad was able to enjoy it, but it must have been nice to breathe in the fresh air at least. I know that Dad enjoyed car rides once he had dementia so even if he didn’t like the lake, at least he got to be on the road a bit!

I just have to wonder what Dad saw or thought about as he looked over the expanse of beautiful blue water. Did he feel anything at all or had Alzheimer’s taken away his ability to appreciate the simple beauty of nature?

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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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