Thursday, September 8, 2011

Dental Hygiene

It appears that my mom's hygiene (she didn't shower for a year) is having some consequences. She had some UTIs and things like that when we first took her to the hospital. Now, I am noticing her dental hygiene is really catching up with her.

I read this article (here) from the blog Mental Health Realities about a new study (which can be found here) that had evidence that people with mental illnesses were 3x as likely to lose their teeth than the general population.

I believe it! I just noticed my mom's teeth (the tops are veneers) and made her an appointment right away. Hopefully she won't lose too many teeth.

Sorry if that grosses anyone out. I just thought I'd keep it real : )

Anyone have experience with teeth loss/poor dental hygiene?

Monday, September 5, 2011

So, how am I feeling?

I've been going to Alanon (here) and they stress that you should focus on YOURSELF. That way of thinking has inspired this post. I need to think about how I am feeling in response to all of this.

I have been numbing, especially since my mom's psychotic episode. I felt like I needed to be in control and be the calm, collected one. I didn't react to seeing my mom slip into this bizarre, scary psychosis. I couldn't. Thinking about it now, it makes me sad. I feel so sad that my mom is truly ill. It's easier to ignore depression (even when it got as severe as it did with my mom). But seeing my mom like that breaks my heart.

I also feel scared. Knowing that those genes are in my body and dormant. Waiting to be triggered possibly.

I'm having a hard time taking care of myself too. This whole summer has been about my mom and taking care of her. Even when I wasn't with her, I was having anxiety about her situation and it's "up-in-the-air-ness".

And now that she is here and staying with me, I feel so much pressure about taking care of her. It's so complicated and when people tell me "take care of yourself first" -- it just feels IMPOSSIBLE. Like they don't get how complicated this situation is. I don't know.

I feel annoyed and I want my own space. I wish I weren't put in this position. I wish a lot of things. I wish I wouldn't slip into depression. I wish my mom were well. I wish I weren't jealous of other people whose moms can take care of themselves (and their kids). I know I'm an adult, but that's how it feels.

I feel exhausted.

It isn't over yet?

My head is spinning. I can't believe the summer I've had and the craziness is not over yet. My mom came to visit me after my sister felt like she couldn't handle her any more. My mom arrived in good spirits, but did not adjust well to the elevation, in addition to getting some sort of virus (which was exacerbated by her CONSTANT smoking).

I tried having fun with my mom....doing things I've always wanted to do with her and have her be sober for (pedicures, going out to lunch, having her see my apartment, etc.). And I really tried to be present and enjoy the moments, but they were tainted by how ill she is. She is frail, moves very slowly, is incontinent (big one), and she just sticks out like a sore thumb. I feel like I'm taking care of her all the time.

Then on Friday, she started acting weird. She would ask questions that didn't make sense (ex: I would finish a sandwich and my mom would say "I hate how you never eat") and she was disorganized (forgetting to wear shoes out of the movie theater, losing things, etc). Friday night she didn't sleep well and instead "organized" my whole apartments (she moved everything around, washed dishes without soap, put my dry cleaning pile in the laundry, etc.).

I knew that was manic, but I didn't think there was any harm in it, so I decided we should go on with our day. We had planned to go to a national park about 1.5 hours away. On the ride there, my mom was acting REALLY funny. She was naming things (house! car! bird!) and counting in random numbers. When we arrived, my mom got out of the car and hadn't worn shoes. It started to become apparent to me that something was very wrong.

We start to drive home immediately and my mom slips into (her first) a very severe psychosis. She didn't know who I was and didn't know who she was. She was SCREAMING numbers any time someone talked to her and was doing funny "exercises".

I know that she needs to go to the hospital and that we were 1.5 hours away.
It was the longest 1.5 hours of my life. By the time we got to the hospital and were checking in, she was SCREAMING "FOOD! FOOD! FOOD!". Louder and louder. Three times. We were put in an ER room and she was wiggling on the floor doing her "exercises" and would scream for anything she wanted "COKE!!!!" "SMOKE!!" and kept taking her hospital gown off. Then she started screaming made up words and numbers until she was losing her voice.

The nurses in the hospital didn't believe me that she wasn't on drugs, and when they ran blood tests that confirmed she was sober, they never apologized. My mom was psychotic from about 1:30-6:40, when she started to come out of it.

She was admitted to the ICU because we also discovered that part of the reason her cough was so bad was because she had a bronchial infection and the reason she felt so bad was because her electrolytes were VERY low (despite only drinking coca-cola and eating candy). It turns out her water pill (to help re-absorb the fluid in her belly from the ascites) was washing all her salt out.

On Sunday, she was transferred from the ICU to the psych ward on a 72 hour hold. She's upset that she is being "held against her will", but I'm grateful that she is getting MUCH better care here (the other psych wards she had been to in Buffalo are terrible because there is no funding for mental health) and I'm glad to have a break from having her on the couch in my tiny apartment (I know that sounds mean, but her coughing through the night and keeping me up was driving ME crazy).

Anyway, she is adjusting well to the psych floor here. It really is much nicer than any other hospital she's been to. They want to adjust her meds because of her "breakthrough psychosis" and add a mood stabilizer. I hope it goes well.

I had noticed that she had been hypo-manic (spending money, talking faster, wearing bright colors, etc), but to be honest, I was happy her dark fog of depression had lifted. I thought it was harmless.

I'm glad she has the chance to get good care here, but I'm also sad that all of this is happening. It's hard and it feels like none of us (my mom most of all) can't catch a break.

I'll update again. I meet with my mom's psychiatrist tomorrow about a plan. I worry about being the only one to take care of my mom...but she really needs support right now.


Monday, August 22, 2011

Summer is over...

Oh, and what a fun summer it has been. I can't believe it's been almost a month since I last posted. Time flies...

An update? Well, my mom was released from rehab. She managed to loose her wallet and ID a few days before she left. Actually, she lost it two weeks before that, but didn't think it was important to tell anyone that.

My sister went to pick her up at rehab (and man, were they happy to see her go) and she has been staying at my sister's apartment. My mom promptly relapsed the first day she was left alone.

She asked my sister's boyfriend for money. He did not know what to do, so he called my sister. My sister felt guilty that my mom was begging him for money, so she told him to give it to her because my mom PROMISED my sister she would not use it for alcohol.

But she did. She went to a bar and bought two shots and a beer. My brother called her after she left the bar and knew right away she had been drinking (amazing how you can just know right away...I know it's the same for me. I can tell when my mom has had ONE SIP of alcohol). He called my sister with his suspicions. She raced home. My mom, of course, lied and said she did not drink. Swore on her life.

So, my sister went to the bar and showed them my mom's picture and they confirmed that she had been drinking. My sister was totally devastated and felt duped. And since then, my sister has been saying she needs my mom to leave immediately.

Originally, the plan was to have my mom visit while we looked for nursing home facilities in NY for my mom. But then we found out insurance does not cover any of those costs, and it is unrealistic for my mom to be paying $50,000/year ... when she has never had a job.

So, now the plan is to have my mom come here to Colorado. She arrives Saturday. To put it mildly, I am feeling a little anxious about this.

Wednesday, July 27, 2011

I feel hopeless today

I'm feeling really hopeless today. I'm saying today, but I've been feeling really down for a while. I feel like my mom's situation has taken over my entire life and it's not getting any better.

Here's an update about what has been going on with her: I've been getting calls (and I say "I" not "we" since my brother and sister have been MIA...especially my sister) from the rehab about my mom's hygiene (from the previous posts) and just about how she has not made any progress. Everyone is frustrated with her at rehab because she openly admits that she is going to drink the moment she gets out, even though she has cirrhosis and it is going to kill her...quickly.

My mom's good friend (who is a Dr.) wanted to know how much of this "unwillingness" (to shower, to understand that drinking will kill her, etc.) is from mental illness (bipolar disorder) versus brain damage from drinking. I'm going to copy and paste some email exchanges:


On Mon, Jul 25, 2011 at 9:40 AM:
In particular you need the result of any imaging of the brain (CT scan, MRI) and any update on your mom's psychiatric diagnoses now that she has been on medications for some weeks/months including prognoses and recommended therapy (not just meds but post-discharge support recommendations). I would be very interested to know about the degree of brain atrophy present and its pattern. As we discussed on the phone, there are some distinguishing features between the atrophy of senility or natural aging and that of chronic alcohol abuse (called Wenicke-Korsakoff which you can read about here). The atrophic changes are irreversible and, particularly if they are of the classic alcohol related type, would be helpful in attempting to predict her future function capacity. While this may in fact be bad news it would at least let us try to play the ball where it lies rather than wonder.


Date: Wed, 27 Jul 2011 12:01PM:
So I just spoke with the psychiatric nurse and she said that Mom refused the spec scan, so they don't have anything to go by with that. But she did say that she spoke with the Dr and other nurses about mom (they all remember her) and she said that they all strongly believe that mom has irreparable damage to her brain and that she will never be able to understand that she can't drink or anything like that. They said she doesn't think mom will get any better than this. It's been almost 90 days of not drinking and if she was going to improve, she would have.

I asked her if she thought any of this could be bipolar related and she said that she couldn't say for sure, but she thinks it's damage from alcohol. She believes mom will never be able to live independently again.

She said mom could always go see a specialist for a brain scan once she's out of gate lodge, but she thinks mom will begin drinking immediately and things will start to deteriorate before we could even get an appointment.

Not sure what the next step is.


Date: Wed, 27 Jul 2011 1:00PM:
I'm afraid this is pretty much what I was thinking but I wanted to hear what her caregivers thought and hoped there would be an imaging study to confirm. For someone with radiology training like me I always want the clinical picture and imaging picture to support each other. Your description of your mom's conversation and behavior suggests a concreteness that is typical of chronic alcoholic encephalopathy or brain damage as we discussed before. This is irreversible. Honestly, I think chronic institutionalization is the only way to keep her alive. While not a pleasant environment from a normal person's point of view she has demonstrated the ability to establish a routine in such a setting at ECMC and these other places despite her complaints. This would cost money for a private setting and would certainly suck dry her remaining assets then end up with her as a ward of the state if she outlives her assets. Or you could consider legal advice as to how to distribute her assets to you kids and go right to ward of the state type status. Or you could follow her brother's thought as to finding her a small rental apartment where she can't get herself or anyone else in too much trouble and let her just finish out the process with her drinking. It is not likely to take a great deal of time if she is left alone. This both sounds and feels harsh to me but I do not see any "good" option here. She has done too much damage. I think the effort was worthwhile because none of us was ready to see her die in May which was about to happen. Also we all now know that we have done what could be done to try to save her.

So, now I'm here. I feel so depressed about all of this. I don't want to institutionalize her (and don't know if I could even if I wanted to). It feels unacceptable to me to let my mom go back home, get an apartment, and then drink herself to death. Soon. I can't imagine not calling my mom, not seeing her, not sharing things with her, not having her in my life. I do not feel ready to let her go. I'm 25 and my mom is 55. She is too young to die.

I talked to my boyfriend and he doesn't really want her to come live with us. I'm sure not that's really a viable option anyway since her health insurance is only good in New York State and I live in Colorado. She might never be insured again if she moved out of New York.

Do I move to New York? Leave my life here? My boyfriend, home, cat, support, job?? I feel hopeless. I have no idea what to do and I have 2 weeks and one day before my mom gets out of rehab. I need to figure out it and I have no idea what to do.

Monday, July 25, 2011

My mom won't shower...

My mom is in trouble at her new rehab place for refusing to shower. People are complaining about her hygiene.

I found this article (below) here...

Why Don’t We Want to Shower When We’re Sick?

I know this seems like an odd question, but I was considering it this morning (in my shower). It is a common problem for people with a mental illness. I have a tendency to avoid showering (really) and I know of others with a mental illness have gone weeks without showing.

So, if all we’re talking about is standing in some warm water, why don’t we want to shower?

I think there is a tetrad of reasons, experienced according to mood: fatigue, crazy, self-hatred and pain.

Too Tired to Shower

If you’ve been seriously ill, mentally or physically, you know energy is in short supply. Sometimes it takes the effort of a thousand men just to open your eyes and get out of bed in the morning. Every muscle flex, joint bend, or even a thought is overwhelmingly exhausting.

And if you only have enough energy to accomplish two small goals that day, you might pick eating and paying the power bill. Both of these things are more important than showering. (And of course, you might not be lucky enough to have even that much energy.)

Too Crazy to Shower

Then there’s the other end of the spectrum. Hypomania (mania) is the fastest time on planet earth. Nothing holds my attention long enough to do it and I’m vastly annoyed at how slowly everything moves. I end up finding myself watching TV while doing yoga and writing the first scene of a book in my head. And then I look at the clock. Five minutes have gone by, but in my brain they’ve felt like 60.

And due to my extreme inattention and annoyance at single-threaded slowness, a shower sounds like the most boring thing in the world. Ever. It wouldn’t even occur to me to bother with one.

Too Hateful to Shower

Those first two I think are obvious, but I think this one is more subconscious and insidious. I sometimes find I don’t want to shower because I hate my bodymy existence) and therefore don’t want to be naked - rather a requirement for taking a shower. It’s not a conscious lack of self-care, or purposeful denial of pleasure, or low self-esteem, or any other therapy-esque interpretation you’re likely to find. It’s just that me, my body, feels really grimy and I don’t want any further proof of its existence. I want to pretend it’s not there. It hurts less to pretend it, myself, doesn’t exist. (I suspect this is an aspect of dissociation. I’m a dissociator from way back.)

But Showers Feel Good

Ah, spoken like a normal person. No, they really don’t. I mean, sometimes they do, sure. Warm water, citrus bodywash, what’s not to like?

It’s complicated.

When I’m in pain I want to put up additional barriers between me and the world. Some subconscious part of me is thinking extra clothes and blankets over my head will save me from my brain. Being naked removes barriers. And I can’t have that.

And I’m not exactly sure how to explain it other than to say the water is painful. It feels like an attack. It feels like I’m in so much pain already that a breeze grazing my skin makes me want to cry.

And I’m really, really trying hard not to think about that pain. That’s the stuff of death. So the last thing I need is to have shards of water splitting through my skin. I don’t want to shower; I’m in enough pain already.

Does anyone have experience with this in relation to depression or bipolar disorder?

My Mom at Gate Lodge

So, my mom is at Gate Lodge and not doing well. She has been getting in trouble for not participating with the program (giving people one word answers, no willingness to stop drinking, hiding food)...and now they are seriously worried about her hygiene.

Her hygiene: she has not showered in ~1 year and she has bouts of fecal incontinence. They had to force her to get in the shower, which she did. But then they realized that she was not using soap, so now they have to watch her bathe.

She says that the water irritates her skin. I'm not sure what to make of this. Any thoughts?