Special Torture (or how to grin and bear it)


December 21, 2020 | Alzheimer's, caregiving, dementia, life | Permalink

Yesterday, my dad used a Le Creuset baking dish to try to fry an egg on the stove top. When he cracked the egg into the dish, it shattered into 30 pieces.

Not a fry pan!

Today, my mom put toothpaste on a bar of soap in order to brush her teeth.

Not a toothbrush!

THIS later insanity, I caught in the nick of time. I was not so timely as to prevent the demise of my favorite little baking dish.

Things are getting weird over here. 

New Feature! Things my dad can’t remember!

December 9, 2020 | dementia, life | Permalink

Things my dad can’t remember :

What happened yesterday.

The date, day of the week.

How to manage his own finances.

That my mom can no longer eat certain foods, and/or needs help in the bathroom and on the stairs.

That I have begged him on more than on occasion not to watch violent or sexually explicit tv while the family is likely to walk into and wish to spend time in the kitchen.

Life is getting interesting!


December 9, 2020 | Alzheimer's, caregiving, life | Permalink

What the hell happened? How did I just drop off the map in March and, quite literally, forget that this blog was sitting here? I’ll tell you. COVID happened and they sent my kid home from school and she has not been back since. A spring, a summer, a fall and it’s now December. So much has fucking happened. When the pandemic started we said wishful things like,”by the time it’s our birthday” or “by Halloween”. God. It’s so bad with no end in sight.

Let see, first weeks of what I called Homeschooling, then a month or two of actual virtual school, and then summer vacation. That went smoothly enough. It was hard, but we escaped to play outdoors with friends from time to time, we swam in a river in Maryland several times, and we waded in our own like a slice of kiddie pool heaven in the backyard. The most noteworthy thing was my hair growing back. Sounds easy enough, but it was a long slog to be sure. So much anxiety about staying safe and healthy. The kid took up all of my free mental bandwidth and I honestly think I completely forget about this blog by April 1st.

Half a year passed. September brought disaster. My mom got sick with sepsis and spent a week in the hospital. Had I been writing here during any of that, you would have heard an earful about hospital delirium and how shocking it is to finally see a dementia patient so confused they are willing to poop in a cupboard. But during all of that, I steadfastly did not remember this blog!

I chose to keep the kid out of hybrid learning in order to keep us all less exposed and that has been a fucking nightmare. Months in, I think we are finally hitting our stride, but it’s still not easy.

So, things are changed so much. Life was turned upside down, not one but three times.

What, you might wonder, got me thinking about this place again? What prompted me to return? I got the bill for the hosting. It really took an invoice to jog my memory.

So that it. The quickest, bare bones update I can muster. I have decided to pay the bill and see what I can offer. Stay tuned.

Just Plain sad.

March 17, 2020 | Alzheimer's, dementia, life, patriarchy | Permalink

My Aunt died today. A quick and intense battle with ALS. I guess if I could choose 5-month struggle with ALS or years and years with Alzheimer’s… oh, man. 

So I told my mom first thing in the morning. She is weirdly spared her grieving today as she can’t seem to remember for more than about 5 to 10 minutes. She remembers the hours we spent with my aunt last week. With driving, It was a whole day affair. My aunt was mostly immobile and asleep much of the time we spent together. We spent several sad hours that way and so my mom has a firmer memory of this. As such, mom knows something is up and has asked me about her sister several times today. “How is Weezie? Is she still with us?” Little things are filtering down. It will be interesting to see how the coming days play out.

My folks don’t spend a lot of time together outside of the kitchen and no one spends much time in the kitchen except my dad and this first and only love, the TV. I speak with about 90% certainty when I say that my folks only had brief moments together today and that I was with them for most of that time. My father had nothing to say about his sister in law’s death. He did not ask my mom how she was or what she might need or what she might be feeling. 

Grant it, I did leave them alone after dinner and they are both still down there, but my dad also turned his favorite TV show in at 7pm. So Yeah. Not much conversation is happening. Some might be tempted to suggest this is because he knows her limited memory will make this questions pointless or triggering, but to this, I can only say that he denies her dementia in almost every other way and insists she can retain memory in the most routine fashion (like suggesting she can be left home alone to deal with arriving plumbers and the like. Yes, this really happened.)

So just a tiny peek into my father’s world – too mortified or uncaring to actually ask my mom how she is after her sister has died. It’s sad. Just plain sad.

Sad face. Covid-19 style.

March 14, 2020 | caregiving, health, life, mental health, parenting | Permalink

In the days leading up to the covid-19 social isolation, I felt a distinct thrill like you might on the eve of a snow day or the moment the lights go out and you have to find the candles, but as I face this first full day, I just have to say that I am tense beyond what is called for. I think as an adult I’ve always faced uncertain and exhilarating times like this with company that I wanted to keep – with my housemates or my partner, but now I find that I’m facing potential weeks of such isolation with people that is effectively my job to take care of. I don’t want to spend this time with my parents. I don’t hate the idea of spending this time with my daughter but I wish I had somebody. Else.

The Hardest Part

March 13, 2020 | caregiving, life, mental health, patriarchy | Permalink

When I decided to move home to be the full-time caregiver for my family, I expected the hardest part would be to manage my mom’s ever-increasing dementia. Of course, this would be hard. The world tells you how hard this will be and I had few illusions. I also wondered if being a for-real stay at home mom to a then 5-year-old in half-day kindergarten might be a close second. I had always had breaks from the kid for at least 4 hours a day while I worked. Half-day K was basically 2.5 hours a day. She had had longer pre-k days. Anyway, those were my expectations and I guess at first that’s how I leaned into my new circumstances. Adjusting to mom’s increasing dementia will always be a challenge and a process. The year of kindergarten and that first real summer vacation were intense. I relied on screen time much more than I care to admit. 

BUT, all this said, the truth of my situation took some time to solidify and become clear. Months had to pass before the wool started to shift away from my eyes. The hardest part of my situation was not my mom or my kid. It was my dad. The 80 something-year-old man whose house I now lived in. And this is an important distinction. My daughter and I live in his house. Not our house. Not even my childhood home. An important distinction. I am really not joking when I say that the hardest part of my life now is because of fucking patriarchy and how it has allowed this man to be in charge for his whole life without really doing all that much to earn that control. I wish I was joking.

A year and a half later, there are plenty of humorous or frustrating anecdotes I can share with you. There are also things too sad or rage inducing for me to want to even share.  But please let me be clear – My Dad is the perfect product of the patriarchy. It’s just that simple. His needs and his comfort come first at the expense of all else. This is his house and these are his rules. In his house, what he says goes and our is not to question why. Ok, even as I type these words, I have a sense that they might be misleading. He does not say these things outright. In fact, he is remarkably distant and checked out, but man, this is the unspoken agreement that my father brokered with my mother decades ago. Before they even had children and I bet. And it was handed directly to my father by his parents and it was impressed upon me and I presume my siblings with a certainty and finality that leaves me breathless at times. It can be difficult for me to put into words something so enormous, that I was taught without direct instruction or acknowledgment. It’s gonna be tricky for me to convince you (and likely others are my family and community) how profound and pervasive my training was and what the expectations in this house still are. But I can easily insist that the hardest part of my life now is how the dominance of this male figure looms for me and my daughter. And for my mother. She has tacitly enforced all of these assumptions and programing and so to some degree, I feel inclined to say, “She made her bed” because honestly, I learned the importance of my father’s position FROM HER. But it’s still heartbreaking to see how little care my father is capable of offering his wife. How easily he can disregard her medical condition, her emotional needs, even her physical presence. 

So there we are. My dad is a dick. He has his kind, funny moments. He is a lot freer with his money than I ever expected him to be. But that’s about it. Most days, even his version of clam and laid back seems toxic to me. And that is mostly because of his media consumption. From 7:30 am to 10:30 pm, he listens or watches. Right-Wing talk radio. Youtube. Fox News. Law & Order SVU, Forensic Files, Court TV, Chair throwing talk shows. And all of it is at TOP VOLUME. He does not stop to think about how triggering or simply annoying this might be. Even after being told time and time again, he is confused about, for example, how a tv show about children being molested or women being murdered by their husbands is unpleasant and best and at worse, grossly inappropriate when a 6-year-old is in the room. But he wants it, so he gets it. 

And the absolute worst part? I watch as my father scolds and diminishes my female child and I am both enraged on her behalf and my own. Because each chastisement and belittlement, each insistence that our needs are less important than his, are a repeat of what was offered to me at her age. It makes my blood boil. 

When I was a teenager I hated my father. I just did. Did not have much love for my mom either honestly. I left their house with a “good fucking riddance” on my lips and thought I would never look back. And for years I stayed away for everything but major holidays. More years passed. Feelings were tempered. At some point, I returned home and everything seemed so quaint and kind that I thoroughly second-guessed my own experience. God, I was an angry teen. What the fuck had my problem been anyway? I told myself that the most significant difference was that my dad had retired and “gotten nice”. By the time I was in my mid-30s, I had forgotten my anger and told myself it had all been in my head.

Now, a year and a half later, I am completely blown away by how on point I had been as a young woman, how justified my anger had been. In the 90s, I did not have the literal or emotional vocabulary to express what they had done to me. I do now. I don’t want this blog to be a place where I only talk about how difficult my life has become or how much I hate my dad, but I am pretty sure I am not gonna be able to keep it all to myself. 

It’s the thing that will probably keep me from telling my friends and family about this record. We shall see.

This shitty week

March 13, 2020 | caregiving, health, life | Permalink

This week, I took my dad to the ER for what looked like a heart attack (it was not). My aunt was moved to hospice and my cousins have no idea if she will be 5 days or 5 months. I scheduled an appointment with a lawyer for the first time ever to make sure my dad’s will/estate is in order (it’s not). My mom’s doctors are insisting that we get her to sign a DNR cause “elderly patients with dementia do not recover from CPR”. I had a memorial for a friend this weekend that was just canceled due to covid-19 worries. AND they are closing public schools in all the counties all around us because of the same. This week can eat shit.


March 12, 2020 | Alzheimer's, dementia, health, life | Permalink

Things my mom can’t remember :

What happened 5 minutes ago.

That her sister is dying.

That there is a global pandemic.

The year, month, day of the week.

I want all of this to seem shocking and unreasonable, but the truth is it’s totally mundane. Millions of people in this country alone can’t remember simple or profound things of this nature. It blows my mind over and over, but then it doesn’t. Then it’s perfectly par for the shitty course.

The Things We Know

March 2, 2020 | Alzheimer's, caregiving, dementia, life | Permalink

My mom started showing signs of dementia right around the time my kid was born. Maybe even before. That was six years ago. I took her to see her first neurologist 5 years ago. We were sent home with the advice that my mom should exercise more. “There was nothing to be done,” they told us. I know now, of course, that they could have medicated her and that could potentially have slowed her dementia’s progress. It’s frustrating to think about that. It’s embarrassing to admit that for much of that time I could not even bring myself to use the word “dementia”. I thought that since no doctor was saying it, that there was some flavor of normal aging-related memory loss that was just that – memory loss, no more, no less and that “dementia” was something else entirely. Dementia was something doctors would recognize and take steps to treat or at least diagnosis. For the first few months we lived at home it seemed like my mom was just the same forgetful self she’d been for years. When we moved in, my mom could accomplish the following :

  • She could fill her own pill holder and remember to take her twice– daily meds.
  • She would regularly bathe herself.
  • She managed to feed herself her meals and occasionally succeeded in making a meal for my dad.
  • Get dressed on her own.
  • Do limited housekeeping like cleaning and maintaining a grocery list
  • Weekly Laundry, including ironing, and changing sheets

It only took a few weeks for me to see where she was slipping. I took over the management of her medication almost immediately. Other tasks became mine as she demonstrated more and more trouble with the job or others that she simply one day stopped doing for no discernible reason. For example, she has been doing weekly laundry. It was not even on my radar as it was part of her regular routine. Then one day, about 5 months after we moved in, I realized that their hamper was over following. She had managed to do some laundry in the weeks past, but my dad admitted it has been almost two months since the sheets on their bed had been changed.

More and more she would stay in her pajamas later and later in the day. I would have to really push for her to head upstairs and get dressed. Then one day, after I had shooed her upstairs after breakfast, I was playing with Pem in our room and Mom wondered in half-dressed and said, “I don’t know what I am doing.” It was at that moment that I realized that there is no such thing as just memory loss. That single statement hit me like a thunderbolt. This was dementia.

I took her straight to her primary care and explained how things had changed. They recommended a new neurologist. After waiting what seemed like ages for her new patient appt with the new neuro, we were sent home with a prescription anti-depressant and a single drug to “slow cognitive impairment”. What we were not sent home with was a diagnosis. I was frustrated and confused. My mom could not even remember these appointments and no one had anything to say about that! 

When we were leaving the appointment with this new neuro, I asked the person at check-out a visit summary for our records, but for some crazy reason, there was not a single piece of paper available for us to take home. The receptionist gave me the card for Doc’s assistance and when we got home I emailed her and asked her to mail the summary for the visit. She did this promptly and also included the physician’s letter to my mom’s primary care. In that letter, the neuro spelled out her diagnosis of Alzheimer’s. But that word had not once been used at our appointment.

When I demanded to know why we have not to be informed of this, her neurologist and primary care doctor each blamed the other. “Oh,” they basically said, “I thought the other doctor had told you”.

Can you even imagine? “Oh! Sorry I never mentioned that cancer diagnosis” says your oncologist “I thought your primary care told you.” Yeah, like that.

I insisted that I bring my mom back in so he could deliver that diagnosis. I insisted my father join us for that appointment. I got all three of us to said appointment and the neuro talked to my mom and dad for over 5 minutes about “normal aging” before he uttered the word “Alzheimer’s’. I watched their eyes glaze over. When he was done talking at them, he asked if either of them had any questions and they both politely said “no, thank you for your time doctor”. No questions. None.

My mom received the diagnosis too late to remember the diagnosis. She still does not even really know that she is sick. She thinks her memory loss is because she is growing old. She also seems to think that if she tried harder she might remember more. That part sucks.

Recently, my mom’s primary care doc retired. I can’t say I was sad about that. When I took the steps to find a new doc, I was mindful to engage a practitioner with a specialty in geriatrics. We saw her a few weeks ago and she asked me very directly if anyone had ever really talked about the results of my mom’s MRI from 5 years ago. I said I supped they had and recounted that we were sent home without a diagnosis or any plan of action all those years ago. The new PC seemed a bit flabbergasted. She explained that my mom’s brain is riddled with strokes (They did mention this 5 years ago, but wrote it off as an HHT thing and made zero connection to her burgeoning memory loss), but that it’s entirely likely that her dementia is vascular. WHICH IS NOT EVEN ALZHEIMER’S. She went on to clarify that my mom probably suffers from mixed dementia as so many do. Nothing really changes now that we have this information. But is just another example of how poorly informed I feel like we have been.

So where are we now? I’ll start getting to that soon.

Where to start? Again.

February 23, 2020 | caregiving, life | Permalink

The daughter I tried so hard for back in 2011 and 2012 is now 6 and a half. She is fucking brilliant. Hard, but brilliant. Her name is Pema Aldrin Lenz. Best. Name. Ever.

After only two years of my daughter’s life, her dad and I split. We continued to live together for our finances as much as her. Two years after that, I was laid off from my job of 22 years. A few months after that it was pretty clear my mom was well on her way down the road to dementia.

When I talk about all of this with strangers or even friends I almost always say “the stars aligned”. If I had not left Pem’s dad, if I had not lost my job, I don’t know if I would have been the kid that moved back home. But those things had happened and it all just made sense.

It’s been a year and a half. I brought the kid to live with me here at my folk’s house moments before her 5th birthday. The first year we lived at home, the kid was in half-day kindergarten. Between managing her, the house and my mom, I bearly got a thing for myself done. Now that she is in full-day first grade I find – mostly because my mom is not to far gone, I have time. Time to myself. Blessed time. I had been doing some private journaling, but it’s hit or miss. I never really committed. The writing was fun, but I was not that motivated. BUT THEN. The my old employer rang and said that after two years there weren’t going to float my domains anymore. “Eh, let ’em go” was my first thought. But then my second thought was “Write”. I renewed this domain.

So here I am. Back in WordPress. Back at specialtorture.com. I have so much to say. I am not sure how much I can say here. I still don’t know if I am going to let it all hang out or be more circumspect. The next few days and weeks may tell.

In any case, welcome. Thanks for being here.

Week 5 begins today. At least I think it does.

December 18, 2012 | health, life, pregnancy? | Permalink

I am a little confused about how far along I really am because the whole “your pregnancy starts with the first day of your last period” thing only works if you have a 28 day cycle and ovulate on day 14 which I don’t and didn’t. If I work backwards from the day I actually ovulated, then week 5 starts today.

Also, if I work forward from that day, I see that I have a due date of August 20th. How about that?

At ant rate, had my follow up blood tests yesterday. My HCG and progesterone levels are perfect. That’s good news. Turns out they want me to have my very first ultrasound this week too. That’s happening tomorrow. Crazy. It’s not the standard “lets see how far along you are” ultrasound. This is the, “you are a high risk of an ectopic pregnancy” ultrasound. So, understandably, I am a little freaked out.

Just a little. meep.


December 13, 2012 | health, life, pregnancy? | Permalink

My HCG and progesterone levels look “ideal”. I have to return to Dr. K’s on monday for more blood work to make sure I am progressing properly hormone-wise. But um so. I am pregnant. Didn’t think I would ever type those words. And while I am deeply aware that so many things could go so wrong at any moment, I am uncharacteristically calm and at ease. I might not be pregnant tomorrow or next week or one month for now, so I am just gonna soak this up. Right now, I am and this proves that I can be and that’s all I need to know right now.

Day Two. 2 Tests.

December 12, 2012 | health, life, pregnancy? | Permalink

day two

day two

SO here we are. I go to Dr K’s tomorrow for “blood work”. Still only cautiously optimistic. So much up to chance.

PS : How am I supposed to work today??