So How Is Your Mom? It's a question I hear so often sometimes I want to scream, and other times I desperately wish someone would ask me that very thing. My mom's illness has consumed my life and I'm caught between wanting to do everything I can to "fix" things and wishing I didn't have this burden to bear.
So, really, how is she? I have been so caught up enrolling her in Medicare and talking with her doctors about how this drug is garbage and this one seems to work well I forget to look at how she is doing. I guess the best way to describe it is "better." Since the dose of Haldol was lowered she is stronger physically. When she was originally put on Haldol she was an active young looking 63 year old. Quickly, she turned into a "on death's door looking like a 100 year old" woman. Haldol was to blame. It's only benefits are that it's cheap and can be injected into a unwilling patient who doesn't see her illness. The side-effects are absolutely horrid. But if you don't have insurance you take what you can afford or what's given for free.
She's on a much smaller dose of Haldol now and the doctor added a new antipsychotic with it to make up for the lower dose. She's still delusional, but at this point she's healthier than we hoped for just a short time ago. She's stronger and a bit more lucid and she hasn't cussed me out in at least two weeks. She's been diagnosed with Dementia which is common with schizophrenics. The doctor started Aricept last week and we are hoping it will make a difference.
We had Hurricane Irene swing through the area over the weekend. It wasn't so bad, but it reminded me of the last time we had a Hurricane coming our way. I had my mom stay over and my husband and I slept in shifts to keep an eye on her. Right after the storm she ended up hospitalized for a few days with a massive bladder infection which made her mental state decline rapidly. It was evident the minute she stepped foot in my house that she needed medical help that time.
But for this Hurricane this past weekend she was at her assisted living facility with a backup generator and medical staff making sure she was safe. The medical director even told me mom shared her Coca-Cola stash with a fellow resident who was sad the Coke machine was empty. As for me I spent most of the storm sleeping. I guess the weight of my recent burdens were lifted for a moment and my body decided it needed some healing time.
Today I visited mom to make sure she was safe. The facility was on backup generator as the power was still out, but my mom was in good spirits. Up until the last three visits she has refused to get out of bed when I'm there. I had her doctor change one of her medications and I think it's helping. She was angry I stole her shoes. She had two pairs of Crocs and she slipped on the stairs a few times. I bought her some laceless Keds which she hates, but are much safer for her to wear. She entertained me with stories about how she was planning on marrying a guy named Larry who lives upstairs, and how she changed her mind and he found someone else. I told her I didn't realize she was dating, to which she replied, "we weren't. I was just going to marry him." She was thankful she didn't marry him because he was into lots of sex. She also mentioned the newest activity there is "panty raids" led by Larry. Strange since it's an all female facility. I gave her a much needed manicure and pedicure (complete with a baby wipe foot bath). The second one left me desperate for a shower. Must remember to show her doctor her feet next visit. Then mom crawled back in bed for a nap before dinner. Before leaving I asked the medical director who "Larry" was. Turns out he's the son of one of the residents and he'd just stopped by for a visit last week. I asked them to keep and eye on her and to please make sure she washed her feet next time she showered.
This week my plan is to pay attention to my kids before school starts next week and I don't see them as much. Then start working again on all the fiduciary work I have waiting. More on that fun next time.
Monday, August 29, 2011
Friday, August 19, 2011
Been A Long Time...Long Post
I didn't realize until today that my last update was in May. I kinda like having this blog as a history of all we've been through. Maybe it can help others, maybe it's just cheap therapy for me. At any rate a lot has happened and I have a lot of updating to do.
Back in May my mother was at VBPI. They ended up keeping her for over a month, only releasing her when funding ran out. It is completely ridiculous that in this country you can be denied care because of inability to pay. But I digress...
A doctor at the facility determined her unable to care for herself or make decisions regarding her care about a week into her hospitalization. The logical next step was to file for Guardianship and Conservatorship, but with the lawyer fees running about $5000 just for my lawyer it was an expense I simply couldn't pay. I considered begging family members for the money, but really, then what? There would be no money to pay for her care or anything else she needed. So I decided to file for Guardianship and Conservatorship pro se (legal speak for without a lawyer - I only learned that because they kept calling me that at the court and I had to ask what the heck it meant). I spent countless hours online and finally discovered this booklet http://www.courts.state.va.us/courtadmin/aoc/cip/programs/gal/adult/guardian_conserv_proceedings.pdf put out by the Virginia Supreme Court. It made it sound pretty simple, but I was scared to death to try. I headed up to the Chesapeake Circuit Court to ask the Clerk's office for help, but they directed me to the library across the street. As luck would have it it was "free law day" at the library and I was able to talk with a lawyer and he assured me I could just follow the booklet and if there were problems the Guardian ad litem would take care of it for me. Funny fact - I discovered only last week that he was my father's divorce attorney. How weird is that?
So my mother was still in the hospital as I started writing my petition. The lawyer suggested getting letters from family members stating they didn't protest so I started asking all the closest relatives to write the letters. I couldn't find current addresses for my mother's half-siblings so I asked her two full siblings, mother and my siblings to sign the letters. My aunt was the first to send hers to me and my siblings slowly got theirs done. But my uncle protested. He didn't understand why she needed a guardian. I guess since he hadn't seen her since the early 1980s it was a bit of a shock. But he convinced my grandmother not to sign her letter, either. Then my uncle suggested he be guardian. Considering he lives like 10 states away and hasn't seen her in over 30 years that did not sit well with me (and the reason why I had to stop writing my blog so I didn't "tip him off"). I worried I would have to come up with the money for a lawyer in case he chose to fight me. In the end another lawyer (giving me some free advice) mentioned I only needed to contact 3 relatives (4 siblings = done) and that the court wouldn't really care what a relative thought that lived so far away. So I filed my petition. I thought my heart was going to explode it was beating so hard the day I went up to the counter and paid my $20 and filed my petition. The Clerk even took pity on me and assigned a Guardian ad litem for me since at the time the rule was I had to find someone first. The rule changed July 1st.
During this time I was in daily contact with the social worker at VBPI and my mother's regular case manager at the CCSB. It was determined that she needed an assisted living facility. Well she actually needed long term hospitalization, but since she was only 64 3/4 years old and the only people who can be admitted to the under 65 year old mental hospital are prisoners. And due to bureaucratic garbage she could not get a nursing home evaluation so, an assisted living facility was our only choice. My sister and I visited dozens of places. Her more than me, but I spent more time working the phones. So many of these places were horrid. One reeked of urine in the room they happily suggested our mother move into. Finally we brought our list down to a few we liked, but would have to have family pitch in to help pay for. Then they all started saying they couldn't accept her because of her schizophrenia diagnosis. This is despite telling them when we first spoke with them and having them tell us it wouldn't be an issue. Then we lowered our standards and tried others who denied her. Then we lowered our standards again, but this time were told that because she was not receiving Medicaid she wasn't allowed to go to these facilities. We heard through the social worker that the dr said we needed to "step it up." I was livid. My sister and I were living on almost no sleep getting the run around every where we looked. There wasn't anywhere to "step up" to! So basically we were screwed. Luckily my sister stopped me from heading to an assisted living facility (run by Sentara) to let loose some verbal frustration and found a facility in Norfolk. The night before discharge we also found one on the Eastern Shore, but when we visited it was definitely not somewhere we would like our mother to live. The Lydia Roper House in Norfolk is a beautiful Victorian Home. They have really been wonderful to her. It's clean, sunny and bright. I think I want to live there when I'm old.
Mom was settled and a week later we had the court hearing. Mom had her own lawyer, Colleen Dickerson, who was awesome. She was as helpful as she could be. She met with my mom and agreed she needed a guardian. She walked me through the court hearing and even complimented me on my petition. The judge said I did better than some lawyers he sees. I had to pay Colleen's fee of about $1500 and post my bond (insurance in case I screw up my mom's finances) of about $700 and there it was. Less than if I'd hired my own lawyer, but still wiped out a good portion of our savings (my brother helped and later my older sister did as well). My sister and I were co-guardians and I was sole conservator. At that moment I really wondered why I had done it. The work was overwhelming. But then again my mother did carry me for 8 months, give birth to me and fed me from her breast for the first year of my life so I guess I kinda owe her.
But that day I had scheduled a visit with an eye doctor for her She had a weird eye discharge that wasn't responding to antibiotics. There was no time to celebrate a legal victory. My husband picked her up and drove her to the appointment so I could head over straight from court. I sat down next to her in the waiting room waiting to be called back and she started to call me every awful name she could remember. She fought me through the appointment. I paid the bill with more money from my savings and drove her back to the assisted living and got her up to her room. I stopped by the office to give them the med orders and headed home. I started to cry. Now I'm not much of a crier. I've spent the past year fighting them because I just simply don't have the luxury of time to cry. I crank the stereo up to make them stop. But this time they didn't. I cried the whole way through downtown Norfolk traffic. They finally stopped when I was almost home, thankfully. I didn't want my kids to see me cry. Especially about something they didn't understand. And God I hope they never have to understand.
We found out a few days later that she was suffering from side-effects and the VBPI doctor failed to put her on the medication that would control the side-effects. It took some time, but she stopped calling me a B**** so much. There are good days and bad days. Many times the bad days outnumber the good. She sleeps a lot.
Life is hard right now. But I choose to help my mom not because I love it, not because I feel it is my duty to her, not because I owe anyone anything. I just don't think I could live with myself if I didn't. So much of life is doing things because they matter to others. I tend to forget myself. But when there's so much need it almost feels selfish to do something for myself. But last night, after the kids were in bed, I crawled in the tub and read a book. That was just the right amount of selfish I needed.
Back in May my mother was at VBPI. They ended up keeping her for over a month, only releasing her when funding ran out. It is completely ridiculous that in this country you can be denied care because of inability to pay. But I digress...
A doctor at the facility determined her unable to care for herself or make decisions regarding her care about a week into her hospitalization. The logical next step was to file for Guardianship and Conservatorship, but with the lawyer fees running about $5000 just for my lawyer it was an expense I simply couldn't pay. I considered begging family members for the money, but really, then what? There would be no money to pay for her care or anything else she needed. So I decided to file for Guardianship and Conservatorship pro se (legal speak for without a lawyer - I only learned that because they kept calling me that at the court and I had to ask what the heck it meant). I spent countless hours online and finally discovered this booklet http://www.courts.state.va.us/courtadmin/aoc/cip/programs/gal/adult/guardian_conserv_proceedings.pdf put out by the Virginia Supreme Court. It made it sound pretty simple, but I was scared to death to try. I headed up to the Chesapeake Circuit Court to ask the Clerk's office for help, but they directed me to the library across the street. As luck would have it it was "free law day" at the library and I was able to talk with a lawyer and he assured me I could just follow the booklet and if there were problems the Guardian ad litem would take care of it for me. Funny fact - I discovered only last week that he was my father's divorce attorney. How weird is that?
So my mother was still in the hospital as I started writing my petition. The lawyer suggested getting letters from family members stating they didn't protest so I started asking all the closest relatives to write the letters. I couldn't find current addresses for my mother's half-siblings so I asked her two full siblings, mother and my siblings to sign the letters. My aunt was the first to send hers to me and my siblings slowly got theirs done. But my uncle protested. He didn't understand why she needed a guardian. I guess since he hadn't seen her since the early 1980s it was a bit of a shock. But he convinced my grandmother not to sign her letter, either. Then my uncle suggested he be guardian. Considering he lives like 10 states away and hasn't seen her in over 30 years that did not sit well with me (and the reason why I had to stop writing my blog so I didn't "tip him off"). I worried I would have to come up with the money for a lawyer in case he chose to fight me. In the end another lawyer (giving me some free advice) mentioned I only needed to contact 3 relatives (4 siblings = done) and that the court wouldn't really care what a relative thought that lived so far away. So I filed my petition. I thought my heart was going to explode it was beating so hard the day I went up to the counter and paid my $20 and filed my petition. The Clerk even took pity on me and assigned a Guardian ad litem for me since at the time the rule was I had to find someone first. The rule changed July 1st.
During this time I was in daily contact with the social worker at VBPI and my mother's regular case manager at the CCSB. It was determined that she needed an assisted living facility. Well she actually needed long term hospitalization, but since she was only 64 3/4 years old and the only people who can be admitted to the under 65 year old mental hospital are prisoners. And due to bureaucratic garbage she could not get a nursing home evaluation so, an assisted living facility was our only choice. My sister and I visited dozens of places. Her more than me, but I spent more time working the phones. So many of these places were horrid. One reeked of urine in the room they happily suggested our mother move into. Finally we brought our list down to a few we liked, but would have to have family pitch in to help pay for. Then they all started saying they couldn't accept her because of her schizophrenia diagnosis. This is despite telling them when we first spoke with them and having them tell us it wouldn't be an issue. Then we lowered our standards and tried others who denied her. Then we lowered our standards again, but this time were told that because she was not receiving Medicaid she wasn't allowed to go to these facilities. We heard through the social worker that the dr said we needed to "step it up." I was livid. My sister and I were living on almost no sleep getting the run around every where we looked. There wasn't anywhere to "step up" to! So basically we were screwed. Luckily my sister stopped me from heading to an assisted living facility (run by Sentara) to let loose some verbal frustration and found a facility in Norfolk. The night before discharge we also found one on the Eastern Shore, but when we visited it was definitely not somewhere we would like our mother to live. The Lydia Roper House in Norfolk is a beautiful Victorian Home. They have really been wonderful to her. It's clean, sunny and bright. I think I want to live there when I'm old.
Mom was settled and a week later we had the court hearing. Mom had her own lawyer, Colleen Dickerson, who was awesome. She was as helpful as she could be. She met with my mom and agreed she needed a guardian. She walked me through the court hearing and even complimented me on my petition. The judge said I did better than some lawyers he sees. I had to pay Colleen's fee of about $1500 and post my bond (insurance in case I screw up my mom's finances) of about $700 and there it was. Less than if I'd hired my own lawyer, but still wiped out a good portion of our savings (my brother helped and later my older sister did as well). My sister and I were co-guardians and I was sole conservator. At that moment I really wondered why I had done it. The work was overwhelming. But then again my mother did carry me for 8 months, give birth to me and fed me from her breast for the first year of my life so I guess I kinda owe her.
But that day I had scheduled a visit with an eye doctor for her She had a weird eye discharge that wasn't responding to antibiotics. There was no time to celebrate a legal victory. My husband picked her up and drove her to the appointment so I could head over straight from court. I sat down next to her in the waiting room waiting to be called back and she started to call me every awful name she could remember. She fought me through the appointment. I paid the bill with more money from my savings and drove her back to the assisted living and got her up to her room. I stopped by the office to give them the med orders and headed home. I started to cry. Now I'm not much of a crier. I've spent the past year fighting them because I just simply don't have the luxury of time to cry. I crank the stereo up to make them stop. But this time they didn't. I cried the whole way through downtown Norfolk traffic. They finally stopped when I was almost home, thankfully. I didn't want my kids to see me cry. Especially about something they didn't understand. And God I hope they never have to understand.
We found out a few days later that she was suffering from side-effects and the VBPI doctor failed to put her on the medication that would control the side-effects. It took some time, but she stopped calling me a B**** so much. There are good days and bad days. Many times the bad days outnumber the good. She sleeps a lot.
Life is hard right now. But I choose to help my mom not because I love it, not because I feel it is my duty to her, not because I owe anyone anything. I just don't think I could live with myself if I didn't. So much of life is doing things because they matter to others. I tend to forget myself. But when there's so much need it almost feels selfish to do something for myself. But last night, after the kids were in bed, I crawled in the tub and read a book. That was just the right amount of selfish I needed.
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