What do you do when there are no good options?

To Do List
1. Buy Groceries
2. Pick Up Cat Food
3. Strip Mom of Her Rights

It seems really weird to be at this time in my life where I need to switch roles with my mother and become her parent.  I really never thought I would be in this place, especially since she is so young.  I guess that's something very few people think about.  I see some heavy estate planning in my future.

Mom has been going downhill for a while.  Hard to believe a year ago she was fairly fit and actually looked young for her age.  She looks like she's aged 20 years or more since last June.  She appears shorter and weaker.  She can no longer wash her own hair or prepare herself a meal.  These are all things she could do a year ago. 

Recently her mental state has been declining.  Her psychiatrist could tell she needed a change in medication, but mom refused a lot of the drugs.  She's had a string of urinary tract infections over the past 6 months.  Since that causes her to get very confused he did not want to change her medications until she was stable.  It was becoming very obvious to us that that was never going to happen.  So we called a few weeks ago to Emergency Services and my sister had to do a lot of convincing for them to take her for evaluation.  One worker seemed to feel we weren't doing enough for her and that was why she was decompensating.  Maybe it wasn't enough, but it is the best we could do. 

So she's been in the hospital for 2 weeks, which is the longest they've kept her out of all of her hospital stays.  She was initially starting to stablize, but began to decompensate last Thursday.  Normally, after seeing a small amount of improvement the hospital would discharge her and she decompensates at home out of their view.  I'm not sure why they didn't this time, but they wanted to keep her a few more days.  The acute care case manager with the CSB had to beg for more time and was given a few more days.  She started to decline the next day and has continued to get worse.  We were concerned all weekend that the funding would run out and she would be discharged even though she isn't stable simply because of a lack of funding. The stress has been killing me. I've emailed my Delegate, State Senator, Federal Senator, the President and the Mayor all in hopes someone will help.  My Delegate and State Senator have been the most helpful, but have stated there is little they can do for her.  I've promised to help them change the laws even if my mom's situation resolves.

So today I started to gather information to file a petition for adult guardianship.  I went up to the courthouse today to see if I could file.  It isn't just a form to fill out (nothing is ever that easy I guess).  I have to write a petition so, they sent me to the library to find an example.  As luck would have it I stumbled into "Law Day" where you can talk to a lawyer for free.  I found a lawyer familiar with the process and he helped me a great deal.  I took his card so if I have more questions I know who to hire. 

So I'm preparing that process.  Over the weekend my mother failed her Capacity test that would show if she could make her own decisions.  That will help if I can get a record of that.  The doctor may file the petition, but I don't want to lose time waiting for him.

My mother called me today (first time since Thursday) and was upset the doctor was trying to send her to Eastern State Hospital for long term care.  She wanted me to do something, but I told her I couldn't. She started to tell me about the people she is talking to.   She says there is a man there that looks like my brother and he informed her she had triplets.  My brother was left and two were taken away.   He was one of them.  Then she said I was a triplet and she was one of octuplets.  I guess I have a lot of relatives to find. 

Dadadadaaaa Super Coper

It's been a while.  Finding two minutes these days seems to be a monumental task.  It's 11pm and I'm just now getting to making dinner.  But it has been a good night and that's been a bit rare these days.

My mom has been getting worse recently.  She's confused and forgetful.  About a month ago I took her to Patient First because I suspected another urinary tract infection.  For those of you who don't know apparently urinary tract infections can affect even the most stable brains. Mom was hospitalized last August because of a UTI and I was trying to avoid that.  Her psychiatrist had planned on changing her medicine at that visit in hopes it would work better for her, but that was put on hold till she was stable.  I faught her about going to the doctor, but since she was in my van and couldn't really walk home she relented and went in.  Of course my suspicions were right and the doctor described it as a "raging UTI."  Lovely.  The doctor said he couldn't evaluate her confusion, but suggested she would be fine in a few days and if I were really concerned to head to the ER.  When we arrived at her house mom turned to me and said "well, now are you going to admit there was nothing wrong with me?"  Um, yeah nothing but the raging UTI, caused by your lack of good hygeine, that's affecting your mental state.  Are you kidding me?

After she finished the antibiotic she actually said to me "I should have listened to you.  You were trying to help and I should have let you."  That made it worth it, although I know I will probably never hear those words again. 

A month later she is showing signs of another UTI.  It's been a rough month with the flu sending both my sister and me to the ER and me staying for 4 days for tachycardia and asthma.  It shows me how difficult life can be.  God, any time you want to make it easier just go ahead.  My younger brother has been helping recently so that's been really wonderful.

Tonight I went to a presentation on Dementia by EVMS and Sentara.  The speaker was Soo Borson MD who is a Psychiatrist who specializes in Dementia.  I've long suspected mom may also have Dementia with the Schizophenia.    In talking with Dr Borson I learned that Schizophrenics often have a form of Dementia that is different than any other form of Dementia and the onset is generally around the age of 60.  Mom is 64.  When I described the symptoms she agreed that it is probably Dementia.  So mom has an appointment with her primary care doctor tomorrow to be evaluated and to check for another UTI.  I got some resources to look into as well.

But the best part of tonight besides getting answers was at the end.  I wanted to thank Dr Borson for her help and she said to me that I was definitely what she called a "Super Coper."  It's what happens to people if they've had to deal with this from a young age.  She said she could see it with my first question. 

I don't know.  It just made me feel like I should be wearing a cape.

And the saga continues

There is some small part of me that wakes up every morning that thinks maybe today mom will be better.  Okay, it's a huge part of me that screams it during every waking moment, but that voice is starting to get a little hoarse and fade away. 

Mom has been having a very hard time recently.  Since she signed the POA I've had people fixing things in her house.  And I think it's getting to her.  My brother was able to go in and fix the eternally stopped up sink and now there are two men coming in and out of her house replacing the heat, a/c and duct work.  This has been very upsetting to her, but I'm sure if she really thought about it she prefers a sink that doesn't overflow (and becomes unusable for a week) and actual working heat.  But she argues with these people till they almost walk off the job and has started taking it out on her aide. 

Ah, the aide.  Seems like a never ending problem.  The first aide was awful.  She seemed to do nothing while she was there and couldn't even be bothered to put mom's medicine out for her.  Not sure if that was included in her training, but whatever.  In November mom got a new aide, who actually does her job.  She cleans and dusts and fixes mom a meal and never forgets to give her her medicine.  What a concept!  Of course this irritates mom to no end.  She was very fond of the cobwebs that have been removed, the spiders have been evicted and her house no longer has that wet storage shed smell.  It just isn't home anymore. 

Back in December I told her aide that she was welcome to make herself something to eat and have lunch with mom.  Mom always eats better if someone is eating with her.  I also said she was welcome to any drinks or snacks she needed while there.  Mom was standing next to me as I said this to the aide.  But she's forgotten the conversation and no matter how many times I remind her she is constantly accusing the aide of stealing the bottled water.  So I wrote a note on the fridge that says "...(the aide) may eat a meal and take a bottle of water with her when she goes.  Cathy."  Then I had to add another.  "Please let...(the aide) do her job.  She is trying to help you. Cathy."  I was hoping that having it written down would remind her better.  I showed mom the notes before I left and told her to read them whenever she got upset at the aide.  Well Monday morning she called me to ask what those notes were on the fridge.  I remind her that the aide is the only thing standing between mom and assisted living.  That usually calms her down, but she forgets very quickly and we have the whole discussion over again.It just never ends.

Recently mom has been talking about a different set of neighbors trying to kill her with a shotgun.  Then another neighbor is fighting with her over her imaginary boyfriend.  I'm concerned she will have to be hospitalized again.  Or worse.  She may hurt someone before we can convince anyone to hospitalize her.  We've talked her into trying a different medication.  Here's hoping it does the trick.  She'll see her doctor next month to discuss it.

But my biggest issue now is I'm not sure how much energy I have left to deal with this.  I'm getting burned out even with my sister sharing the responsibility.  I would like to live my life and not spend it taking care of mom.  I resent her even though I know she's not this way because she has a choice.  Life just makes you want to crawl under your bed and stay there sometimes.  Course if you do that you miss the fleeting moments that make life bearable.

The Arizona Tragedy

Like many of you I've been following the horrible events that unfolded over the weekend in Arizona.  I feel horrible for all those people who were killed or injured. Such senseless acts should never happen.  But I've been hearing some rhetoric which I feel is really off base.  It's the idea that the family should have known and done something to stop him.  While I understand why the public and media jump to this conclusion I know better.  The public gets outraged just like with Virginia Tech.  They blame the family for not "doing something," and they move on because in their eyes they are blameless.  No need to think further.

But if you've been reading my blog you know that state laws ensure that even the mentally ill have rights that are beyond reproach.  Family members can beg and plead for help, but it makes no difference.  Just suspecting someone is capable of something horrible is not enough to get them locked up, no matter how credible the suspicion is.  Case in point, my mother attempted to abduct 4 kids and was hospitalized against her will.  After an 11 day hospitalization (her longest and we had to beg) she is living across the street from those very children.  She recently has been talking about the kids again and saying they need to be saved.  She mentioned this to her psychiatrist.  She walked out of his office at the end of the appointment without question.  The doctor said again that the medicine wouldn't stop the delusions, it only seems to make her too weak to act on them.

I personally think this makes everyone else a little crazy.  Who would let her walk around with the rest of us when she's clearly delusional?  Apparently, Virginia's legislators that's who!  And we the citizens of this country are equally to blame.  We look at a crazy person and we say "someone should do something!"  But no one knows who "someone" really is.  We have no idea that there is no "someone" who will take care of it.  We want health care and a safe country, but we shouldn't pay a penny to fund it.  We want mentally ill people "controlled," but not if it means we are inconvenienced (by a tax bill) in any way.  So these people walk the streets, as is their right, and we shut our eyes to the risk.  The reality is if I block my mother's freedom in any way I can end up being the one locked up.

I certainly don't want to go back to the days where they forcibly lock people up for mental illness.  But there needs to be options.  We have to make it easier to get mental health care in this country.  We can't let people with mental problems, who require hospitalization, to walk out before the medicines have hit their blood streams.  We will have to throw some money at the problem until we figure out how to help.  I don't have the energy to take the entire fight on my own.  I do have a family to raise and an adulthood on hold already. 

Please care.  I don't want to hear about another tragedy like this one. 

Decompensating

Well, despite my best attempts at keeping this current I seem to be falling behind.  I seem to be a few weeks behind in everything these days so I'm starting to not stress out as much as I used to about it.  That could be  a good thing.  Maybe it means I'm maturing in a way.  Maybe it just means the crushing weight of everything going on has just started to numb me.

This past week has been rough.  Temperatures are unseasonably cold for our corner of the world and mom's heat still isn't fixed.  We have someone who can fix it, but working out the particulars is taking a bit of time.  The hope is that by the beginning of next week she'll have heat.  I've set up a lot of space heaters, but mom keeps turning them off and then complaining she's cold.  I finally had to say she either leaves them alone or she's going to the hospital.  I hate to threaten her like that, but it's the truth.  Not being able to take care of her basic needs because of her mental state is one of the few things you can have someone involuntarily committed for.  Danger to herself or others are the only other ways to have the CSB help out with a temporary hospitalization.

I thought my mother had been doing well and seem to be stabilizing.  I had her stay at my house last week because of the cold and I was happy she seemed well enough to function in my home, unlike last time. I took her to her appointment with her psychiatrist on Thursday.  The doctor and I were talking about lowering the dose of Halodol.  I was encouraged that he felt she was doing well enough to lower the dose.  And then my mother started talking about a little gnome that was sneaking in her bedroom at night and knotting up her hair.  He quickly changed course and said keep the dose the same, but we may need to talk about different drugs, but only if her primary can follow her.  Then in the nurse's office waiting for her shot she mentioned  euthanasia had started up across the street again.  If you remember she was arrested for attempted abduction last summer.  She felt she was saving the kids from euthanasia.  Now she was saying the government was paying Gloria $40 each to euthanize kids and place them in gray trash bags and leave them at the curb for pickup.    The neighbor across the street hired someone to rake his leaves and he was using gray trash bags so I think that's where that delusion came from. 

Tonight my sister called to tell me my mother said I was going to kill her if she turned off the heat or if something was out of place.  I guess my persuasion backfired.  Since I have the financial POA she is seeing me as a threat. 

I'm thinking she will be hospitalized again very soon.  It's depressing, but I guess this is reality for now.  Wish I could escape like mom.  Maybe she's on to something.  But I guess if she were really on to something she wouldn't be looking at spending Christmas in a psyche ward.

The long, long journey

Well it's been a long while since I was able to post and a lot has happened.  I've found myself running from one place to the next trying to help my mom with all her needs and somehow meet the needs of those around me as well.  I feel like I'm falling far short of my goal.  It seems like the more I do the more things there are to fail. 

I came to the decision to not coach soccer anymore.  I really loved the girls, but the adults were a bit too difficult to deal with.  And since my daughter does not seem interested in playing anymore it made the decision easier to make.  I will miss it, though.  But it was one thing I felt I wasn't great at doing.  That gives me an unfinished feeling that I hate.

So in the past few months my mother has been through a roller coaster of health. She seems fine some days, but other days I wonder if I should put her back in the hospital.  It seems the most simple acts are impossible for her these days.  She desperately wants to stay in her home as long as possible and remain independent, but I feel she is past her ability to take care of herself to really any extent.  I'm predicting she will be in an assisted living facility within the year.

We hired an aide to come in 3 days a week to help mom with bathing, cleaning and medication.  The first one was a disaster.  The second one was better, but since the company who hired her failed to provide her with instructions and also failed to notify us of the change she was flying blind the first two weeks.  We hired the aide to help my sister and I out and give us a break as far as caretaking.  Some days I feel it just causes more stress because there is always a concern about what the aide is doing there. 

The bigger concern now is that my mom often refuses to eat enough, drink enough, visit the facilities enough or allow anyone else to help her with those things.  There are many times when I visit I find her so dehydrated I consider taking her to the hospital.  After forcing a bottle of water in her she usually seems better right away.  It's amazing to me that she wouldn't do those basic things she needs to do for her health.  I ask her why and she often says she's worried about bladder control.  She often refuses to use the restroom and I feel most of her bladder issues stem from that.  She won't let the aide bathe her so from time to time my sister or I will force her to wash.  I hate doing that at her house so whenever we are at an appointment or for some other reason at my house I throw her in the shower.  She hates it, but I just ignore her complaints and get her clean.  I try my hardest to respect her privacy, but she does need to get clean.

But one good thing happened. My mother finally signed the financial Power of Attorney.  That has taken a huge weight off the family's shoulders.  I was able to have my brother come in and fix a permanently clogged kitchen sink.  She had threatened to call the police on him (like she did to my sister) and try to get him arrested so he was too scared to help out in her house for fear he would end up in jail and lose his security clearance.  With the POA giving me the right to hire people for repairs in her house it gave him enough protection to complete the work.  She spent the day at my house just in case though.  I'm in the process of trying to find someone to fix the ductwork under her house so that we can get her heat working.  It unfortunately collapsed and blocked the remaining ducts enough the heat shuts down after a few minutes. It's been slow getting someone out there and with temperatures heading down I worry about her in that house.  She has several space heaters, but refuses to turn them on for fear it will start a fire.  She does have some mysterious electrical issues going on, but for the most part things are safe.  Right now it's fix the heat first then work on hiring an electrician. 

So the next thing on the agenda is to have her sign the living will and the medical power of attorney.  I'm going to file for disability and medicare as soon as I can.  At least before she realizes what I'm doing and tries to stop me.

Episode 4, healthcare debate

Today I went to visit my mom.  She's starting to regress a little.  For a short time she was taking her medication exactly as prescribed.  I got her a massive pill dispenser that broke down her meds into specific times of the day.  Even though it is just morning and evening she seemed to need something that said "morning" and "evening" for her to remember which ones to take.  She missed two doses since yesterday, though and her mental state was already in decline.  Christina has been working hard to find mom a nurse that can take care of some basic needs during the day.  Unfortunately mom can't afford too much so we are limited in what we can get for her.  I'm thinking an assisted living will be where she will end up, but cost and her willingness to go are big factors.

So today Christina and I talked a little bit about the healthcare changes going on in this country.  She is concerned that because she doesn't have insurance she will end up paying a fine.  That won't help her get coverage and will just make it harder on her family.  I've always been deadset against Universal Healthcare.  I've dealt with military hospitals and the level of care you get there.  I've heard Universal Healthcare is worse than that so it has me scared.  But the more I'm dealing with these roadblocks in getting adequate care for my mom the more I'm liking the idea.  Well, "like" is a strong word.  Maybe "tolerating" the idea is a better way of saying it. 

I've found it hard to believe that they (society, the government, health professions, etc) let my mom and people like her out in the community when they aren't able to make decisions for themselves.  It is obvious we aren't doing enough.  America seems built on the concept that everyone should "pull themselves up by their bootstraps," but the most vulnerable members of our community get left behind that way.  My mom's case manager told me that she sees so many heartbreaking cases.  There are many patients she sees who are homeless and she can do nothing about it, because it is their right to be homeless. 

Rights are incredibly important, don't get me wrong.  But at some point when a person is too mentally gone to make important decisions about medical care and living conditions don't we have the responsibility to help them, even if they don't believe they need our help?

Hopefully soon we will be able to start the guardianship process.  I admit I am too chicken to start it on my own.  I'm looking into organizations who will walk me through the process.  It's either that or work at McDonald's or strip to come up with the cash for a lawyer.  Of course after two kids and too many cheeseburgers I doubt I'd make a dime stripping.

I started calling my legislators.  My delegate Bob Tata has been the most helpful.  His assistant Vicki has run into the same road blocks I have, but is looking into all the legal options we have as for as guardianship or POA.  She even suggested that maybe Del Tata can look into writing a bill to change the laws if they need to be changed.  I won't hold my breath, but at least it seems like someone in power cares a little. Meanwhile I'm looking for help to walk me through the process.  I need to get started.  Every day that passes is one more day I can't help mom.