fear

I need to go and see my mom today. It will be the first time I’ve gone since she was moved to the dementia unit. My anxiety had been subsiding a bit but it’s sky-high again today. It makes me feel ill … and paralyzed.

It’s frustratng that there are so few people in comparable circumstances to my mom’s. There’s never anyone for her to relate to. The truly elderly people are so much older than she is - they’re in her parents’ demographic. The few younger people that were in the other portion of the nursing home were there for short-term rehab, and would be functioning on a very different level mentally - and although my mom wouldn’t recognize this, the other person would.

Also, seeing her in a situation where she’s surrounded by people who are so much worse than her is definitely going to trigger my guilt and self-doubt. It’s difficult to tell yourself that your loved one is in the best possible place when they seem so utterly OUT of place. But, you tell me where to find a nursing home full of 62-year-old brain cancer / dementia patients.

The one (and possibly only) thing that can get me moving is knowing that she needs to see me. She wants to see me and it makes her happy. Her face lights up when she sees me come in, and I’m sure there are a trillion adult children whose parents are no longer able to respond that way who would kill to be in my shoes, even just for a day.

The minute one utters a certainty, the opposite comes to mind.

—May Sarton


On February 7th of 1909, a 30-year-old mother of two by the name of Emma Hauck was admitted to the psychiatric hospital of the University of Heidelberg in Germany, having recently been diagnosed with dementia praecox. The outlook improved briefly and a month later she was discharged, only to be readmitted within weeks as her condition deteriorated further. Sadly, the downturn continued and in August of that year, with her illness deemed “terminal” and rehabilitation no longer an option, Emma was transferred to Wiesloch asylum, the facility in which she would pass away eleven years later. It was around this time that a heartbreaking collection of letters, some of which can be seen below, were discovered in the archives of the Heidelberg hospital; all written obsessively in Emma’s hand during her second stay at the clinic in 1909, at a time when reports indicate she was relentlessly speaking of her family. Each desperate letter is directed at her absent husband, Mark, and every page is thick with overlapping text. Some are so condensed as to be illegible; some read “Herzensschatzi komm” (“Sweetheart come”) over and over; others simply repeat the plea, “komm komm komm,” (“come come come”) thousands of times.None were sent.

On February 7th of 1909, a 30-year-old mother of two by the name of Emma Hauck was admitted to the psychiatric hospital of the University of Heidelberg in Germany, having recently been diagnosed with dementia praecox. The outlook improved briefly and a month later she was discharged, only to be readmitted within weeks as her condition deteriorated further. Sadly, the downturn continued and in August of that year, with her illness deemed “terminal” and rehabilitation no longer an option, Emma was transferred to Wiesloch asylum, the facility in which she would pass away eleven years later. 

It was around this time that a heartbreaking collection of letters, some of which can be seen below, were discovered in the archives of the Heidelberg hospital; all written obsessively in Emma’s hand during her second stay at the clinic in 1909, at a time when reports indicate she was relentlessly speaking of her family. Each desperate letter is directed at her absent husband, Mark, and every page is thick with overlapping text. Some are so condensed as to be illegible; some read “Herzensschatzi komm” (“Sweetheart come”) over and over; others simply repeat the plea, “komm komm komm,” (“come come come”) thousands of times.

None were sent.

I’m the one who’s losing it …

I found a great blog by a young woman caring for her mom (who had Alzheimers) at home - it was really good but also made me feel guilty and question myself because her mom seemed worse than mine (but she was apparently able to stay home full-time to provide care)…

Anyway, do you think I can find my way back to this blog? Not on your life. I’m positive I must have come across by searching a tag such as caregiver, caregiving, dementia … but nada. And there’s no sign of it in my browser history.

Cue the Twilight Zone theme song, I’m going gaga …

p.s. I also lost my car in parking lots twice since my mom moved out.

where it’s coming from

Last week, I entered my mom into nursing care.

That’s a nicely-constructed sentence I use to avoid saying “I put my mother in a nursing home.”

My mom was diagnosed with brain cancer about three years ago and I’d had her at home with me ever since. The tumor responded well to the chemo and radiation she received, but we couldn’t know at the time that she was at the precipice of a fall into dementia.

It happened gradually, and of course I couldn’t begin to cover the descent in detail within a single post. A major scare / wake-up call was the time she bought a bottle of Excedrin PM without my knowledge and proceeded to take the entire bottle, bit by bit, over a 24-hour period. By the time I got the gist that she was more disoriented that usual, she required a five-day hospital stay.

Another roadsign: the time she went for a routine MRI returned home from the appointment and told us that the MRI tech had told her she had two new brain tumors. Anyone who is familiar with the MRI process (or with many other tests administered - but not interpreted - by techs) will know that the tech cannot report on results. I doubted the veracity of my mom’s report, but didn’t know what to make of it. No one wants to suspect their mother of lying - particularly about such a devastating topic. Nor do you want to consider or recognize the possible fact that her mind is so far gone that she can’t control actions such as those. Swallowing down panic, I made calls to all her doctors and received confirmation that her MRI showed no changes.

The trickiest thing about my mom’s mental situation has been the unnerving way that dementia has of running parallel to lucidity. In many ways - particularly in casual conversation - it may not be immediately apparent how deep her deficits run. Indeed, even caring for her on a daily basis didn’t leave me confident regarding the depth of her illness. For this reason, I arranged an evaluation with a prominent neuropsychiatrist in Chicago. His final analysis, provided in writing: “I doubt her safety can be assured within your home.”

Despite all of this, the painfully long period of questioning the neccessity of placing her in nursing care dragged on and on. In the end, one of the decisive factors was the stress level of my son, who is 5 years old. He started kindergarten within days of her leaving our home.

We’re in the second week of her placement and I have no words to define where things stand. In some ways I am thrilled at the ease in which she seems to have accepted her new surroundings. On the other hand, there have been MANY challenges. First, she began demonstrating an unusual change in gait - in other words, her walking was all out of whack. This is an alarming sign in someone with a history of brain cancer. I immediately made moves to have an MRI performed - an unnerving task when I was no longer working solo on her care - I had to wade through a entirely new health network involving her doctor through the nursing home and his nurse practicioner. Second, I received a call from social services at the nursing home, advising me that they had made the decision to move my mom to the dementia unit. In spite of knowing how much assistance my mom required, and not doubting for a moment that the nursing home was making the correct call, it was a tough blow to take. I had hoped that she could function in the “normal” population of the home, at least for some time.

Aside from the very real fear that her tumor has recurred, the worst thing that has happened involves harrassment from our only close relative, my mother’s sister. She is a very unstable woman and my mother’s relationship with her has been fraught with conflict since before I was born. The dynamic between them follows the “best friend > enemy > best friend > enemy” cycle. Although she has many times acknowledged my mother’s issues (incuding refusing to keep her overnight due to the overwhelming challenges involved), she takes no issue with villifying me - to anyone who will listen - for making the decision to move my mother into nursing care. My last communication from her was a voicemail advising me to remove my mother from the “hellhole” I had put her in (it isn’t a hellhole) or she would take me to court for fraud (I’m not sure what the means or what kind of fraud she has in mind) - oh, also that I should be arrested for elder abuse and a “lot of people” know it (she reported me for unspecified elder abuse once and sent the police to my home twice for welfare checks - in all cases the authorities involved found nothing to concern them - also I’m not sure who the “lot of people” are who know I should be arrested, since no one ever comes to our house - you know, to HELP US). I’m almost ashamed to admit that this packed a huge punch for me. I know very well that my aunt is a disturbed person who operates outside of the laws of logic, so I wish I could say that I let her diatribes roll off me like water off a duck’s back. Unfortunately, that simply isn’t the case. It threw me into a very bad state that has so far lasted about three days and is only just beginning to ease.

I am typically a strong and optimistic person. I value life, I enjoy the people I love, I read books and see bands and am (or used to be) a regular young woman. I believe in soldiering through. However, I’ve also come to recognize - I have been FORCED to recognize - that everyone has a limit. I work full-time and have just received a promotion that generates an enormous amount of stress. I am raising my son. I am about to separate from his father (or you might say I AM separated from him, although we have still been living together - amicably - based on my need to care for my mom).  I have a long road ahead of me with the separation - determining support, visitation, new housing, etc. And all the time, I am trying to do the best I can for my mom. I’m sorry to have to admit that it’s about to make me crumble.

Not being perfect hurts.

—Sylvia Plath

right now:

The house is empty but for the dog and the cat. And me.

The dog is a German Shepherd. The cat is a snowshoe Siamese.

I just buried my hand in the scruff of my dog. It made me feel safer, but also immediately reminded me that there is no safety to be found - by clutching onto my dog or by any other means.

I am worried that it is all finally making me crazy.

I want to be somewhere else, where none of this is happening and nothing exists.

It feels dangerous to let my brain think thoughts at all.

season opener.

so tired. so so tired. further tiredness pending dose of medication.

anxiety is traveling through my bloodstream like a poison.

period by KRUNK Interactive