This week has been especially tough for us. Not that any week is easy these days, but this was especially difficult. So I'll start from the beginning, but the basic message is always double check people. Even the best facility you put your loved one in has its flaws.
My mom has been living at an assisted living facility (ALF) since the end of May when she was released from the psychiatric hospital. My younger sister and I spent a great deal of time checking out facilities before placing our mother in one. We wanted to make sure she had the best care possible and this place looked like it was the best. They are clean and seem to genuinely care about the residents. It has the lowest resident to caregiver ratio of any facility we visited. The day we moved her in we were so relieved and confident we could do no better.
Mom has had a few falls. Every time until recently they've been able to explain what happened very quickly. We discovered her shoes were simply too loose and led to falls. I bought her new shoes and that seemed to solve the issue, although I am thinking of buying a slightly larger size because of a rub mark on her foot from them. But more than two weeks ago she had a fall. I was immediately told the next day by the Med-Tech on staff, but it had happened over the weekend and she did not know what exactly had happened. She only knew that mom had a bruise on her right elbow and was refusing to sleep in her bed. Mom said she was stuck in her bed somehow, but there was no incident report that could explain. Last Friday (9/23/11) my mom was finally able to tell me which Med-Tech helped her so I could get an explanation. Turns out she rolled out of bed the wrong way and got stuck between the wall and the bed. I didn't think to make sure the bed was flush against the wall, so I blame myself for it happening, but I'm angry no one could tell me what happened for two weeks.
But fast forward to this Monday (9/26/11). Mom had been acting strange so we had called the doctor to change her medication dosage on the previous Friday. He didn't sign the order (he was at home and couldn't sign the sheet) so he called the facility personally to ask them to change the dosage and he would get them the order corrected on Monday morning. On Monday I get a call telling me she's out of her anti-depressant Celexa. I told them I really didn't want to go up there that day as I was busy (and the events of the previous Friday made me really wanting to avoid my mother). But I was told she couldn't go without so I'd better get there fast. So I called her doctor and had them call it in and dropped everything to pick it up and get it there in time. But when I picked it up I started to think when did I last bring them this medication? Initially I looked at my phone calendar and thought they shouldn't be out of her pills for another week. Then I turned to my absolutely awesome organized notebook and discovered I had filled the previous prescription on 8/18/11, picked it up and delivered it to them on 8/19/11. She should have run out 9 day previous by my calculations. Why were they just now calling me? Is that why she's acting strange?
So I went up to the ALF and spoke with the director who told me she didn't know and the medical director was at the ER with a resident. She said she didn't know where the records were kept, but showed me the September record that indicated my mother hadn't missed a single dose for the month of September. I was promised a call on Tuesday once they could get the August record out to find out what happened. I discovered while there she had only two pills of her Aricept. They hadn't even mentioned she was low!
So I didn't get a call on Tuesday so I went up on Wednesday and demanded answers after taking my mother to her appointment with her psychiatrist (she was doing no better than she had been on the previous Friday).I was told the morning Med-Tech is the only one who knows where the records were kept and they had not had time to search for them, despite having 3 days in which to do so. They assured me an answer by Thursday morning. I mentioned that as Guardian I have to send a report to Adult Protective Services (APS) as required by my court appointed duties. I noticed a sudden change in the Medical Director's demeanor. They blew me off for 3 days and I think that's the first moment when she realized this wasn't going to just go away when I got busy or bored.
On Thursday morning I received no call so my younger sister (co-Guardian) headed up there to demand answers. They (the two directors) were angry that they had to answer both of us and still had no answers to give us because we were taking up the time they had to investigate. They must carry shovels with them everywhere they go to carry that around. They demanded to only have one of us speak to them. My sister quickly denied their request, and read them the riot act (did I mention she used to work in a nursing home and knows how they are supposed to do their jobs?). They started to lay blame with the morning Med-Tech, who knew nothing about it. But when my sister informed the Med-Tech they were trying to blame her the tech did say to my sister that she's never seen them get so upset about something so she's betting the problem will be resolved and will never happen again. We will see. The directors even tried to pit my sister and I against each other and claimed it was our miss-communication that was the problem. She just firmly informed them we communicate incredibly well and assured them the problem did not lie with us. I don't think I've ever been so impressed with my sister in my life as I was that day. I really wish I could have been there to see it.
The directors promised answers by the following Monday (a week after I brought the issue to their attention). Then on her way out my younger sister called the board in charge of ALF's to start an investigation.
Today we still have no answers and our mother's health is at stake. If they started the medication late her recent mental decline could be caused by the addition of this drug. If they were forgetting doses here and there that could be causing her mental decline. I contact Chesapeake APS since our Guardianship reports go to them. They told me how the procedure would work and that we had to contact Norfolk APS since they had jurisdiction. I left messages, but haven't heard back yet. The board in charge of ALFs has not returned my sister's messages either. My mother's psychiatrist has been informed and they are watching to make sure it is handled.
I hope my mom's ALF uses this as a learning experience. If a patient had died from their lack of proper medication protocols things would be far worse for them that what's going on now. But they seem genuinely shocked that a family member would notice a mistake, which to them seems small. I told my mother's case manager at the Community Services Board that the ALF must not realize who they are dealing with. I sued for Guardianship and Conservatorship without a lawyer and did a better job than a lot of lawyers do according to the judge. Do they really think they can get anything past me?
Now I'm demanding they count every pill out for me when I'm there and counting the calendar days to figure out how many pills they've used. I feel like I'm doing their job for them. I even bathed my mom for them on Wednesday because she was just gross (although I know she can be difficult to convince to bathe so I'm not holding that against them). I'm starting to wonder what exactly I pay them for. Mom's doctor at the psyche hospital warned us that he didn't see good outcomes for mental patients at this ALF. I'm starting to see what he was talking about. I'm really hoping that we can just get them to fix this problem and we can go back to trusting them. But trust is a hard thing to earn back.
I know that if my mother were able to understand what is going on, she would be thanking herself and my father every day for my expensive private grade school and public college education. Now if I could just get paid for my expertise we'd be all set.
Friday, September 30, 2011
Tuesday, September 27, 2011
What We Have Here Is a Failure to Communicate
I thought today I would share with you all what a typical phone call is like for me these days.
Me: Hi I'm calling on behalf of my mother. She is an incapacitated adult and I am her guardian and conservator. I need to check on the status of her insurance/payment/bill etc.
Them: Huh?
Me: I am calling on behalf of my mother. I am her guardian and conservator and I need to check on the status of her insurance/payment/bill etc.
Them: So, did she die?
Me: No, she is very much alive.
Them: Can I talk with her?
Me: No, she is an incapacitated adult. She cannot speak for herself.
Them: Just put her on the phone.
Me: Even if she was with me she wouldn't be able to talk to you because she was declared an incapacitated adult by the Circuit Court of Chesapeake.
Them: Well, we don't recognize court documents.
Me: Are you serious?
Them: Yes.
Me: Okaaaaayy, so what am I supposed to do to take care of this for her? Can I email you a copy of the papers.
Them: You can fax or mail the originals to us to look at. We will need a certified copy of her death certificate.
Me: She's still alive!
Them: Oh, well then just fax or mail the court documents for us to look at.
Me: Ok, I just faxed them. Can you verify you've received them?
Them: I can give you no information. It takes 14 days to process the fax if we did indeed receive it. Call back in 14 days and maybe we can talk with you then.
Me: 14 days! Are you serious?
Them: Yes.
Me: Oh geez. Well thank you for your....help.
Them: No problem. Did we help you to your satisfaction today?
Me: Um, is that a trick question? I think the answer is no.
Them: Thank you for calling blah blah blah. Have a nice day!
And scene.
Makes me long for the days when all my calls were augmented by a screaming two year old at my feet. Ah, those were the days....
Me: Hi I'm calling on behalf of my mother. She is an incapacitated adult and I am her guardian and conservator. I need to check on the status of her insurance/payment/bill etc.
Them: Huh?
Me: I am calling on behalf of my mother. I am her guardian and conservator and I need to check on the status of her insurance/payment/bill etc.
Them: So, did she die?
Me: No, she is very much alive.
Them: Can I talk with her?
Me: No, she is an incapacitated adult. She cannot speak for herself.
Them: Just put her on the phone.
Me: Even if she was with me she wouldn't be able to talk to you because she was declared an incapacitated adult by the Circuit Court of Chesapeake.
Them: Well, we don't recognize court documents.
Me: Are you serious?
Them: Yes.
Me: Okaaaaayy, so what am I supposed to do to take care of this for her? Can I email you a copy of the papers.
Them: You can fax or mail the originals to us to look at. We will need a certified copy of her death certificate.
Me: She's still alive!
Them: Oh, well then just fax or mail the court documents for us to look at.
Me: Ok, I just faxed them. Can you verify you've received them?
Them: I can give you no information. It takes 14 days to process the fax if we did indeed receive it. Call back in 14 days and maybe we can talk with you then.
Me: 14 days! Are you serious?
Them: Yes.
Me: Oh geez. Well thank you for your....help.
Them: No problem. Did we help you to your satisfaction today?
Me: Um, is that a trick question? I think the answer is no.
Them: Thank you for calling blah blah blah. Have a nice day!
And scene.
Makes me long for the days when all my calls were augmented by a screaming two year old at my feet. Ah, those were the days....
Friday, September 23, 2011
Life Doesn't Stop So You Can Catch Your Breath
It has been an exceedingly rough week for me. I have the pressures of everything with my mom, but this week was a reminder that my kids need me too.
My daughter has been struggling with her teacher this year and it became obvious very quickly there was no way she could stay in this teacher's classroom. I felt I was unable to communicate with this teacher in any way. It left me feeling like I should return my diploma for my communications degree. My daughter was so stressed her behavior became erratic and she refused to do just about anything asked of her. Finally she was moved into another classroom today and so far seems to be happy and relaxed again.
My son thankfully, is doing great in the 4th grade and he has a teacher who really seems to get him (she loves that he loves to give you the play by play of his favorite show). After such a rough year last year for him this much needed for all of us, especially him.
I was thankful I had the time this week to help my children. I feel like with my mother's illness they often get only small strips of me, when they really deserve whole chunks.
So today, after making sure my daughter was comfortable in her classroom I had to turn my attention back to my mother. She had a dentist appointment today to restore her tooth and prep it for the temporary crown. You may remember she had a root canal last week. She did great for both appointments, but this morning she was acting strange. She was telling me about how there were motors in the beds that flip you out in the middle of the night and that a guy who lives upstairs (still an all female facility) died because he became trapped in the bed. And she went on and on about how her psychiatrist was having the med techs overdose her so she would die and that the housekeeper was saying her room was filthy and if my mother didn't clean it up she would be evicted and then the housekeeper could have her room. Her room was pretty much immaculate when I was there. Okay I think maybe the comb had a strand of hair stuck in it. And she had an incident a week ago where she fell out of bed and they weren't really sure what happened. I found the med tech today who helped mom and she said she fell in between the wall and the bed and got stuck, but the bed is now pushed against the wall and that should solve the problem.
So in true tag team style I texted my sister while I was in the waiting room during mom's time at the dentist to please call the doctor and I described the delusions to her. Her next appointment wasn't for two weeks so it couldn't wait that long. She called and doctor decided to increase the dose and sent a fax to the assisted living. Of course he didn't sign it or make it clear so the facility refused to honor it and we ended in a circle of faxes and voice mails again. Things didn't happen so her dose won't be increased until Monday at the earliest. Are you as annoyed as I am right now?
So I decided to clean up my mom's nails while I was there and had time and she couldn't stop talking about how she was going to die if her meds were increased and that the bed was going to crush her. I assured her the bed would not hurt her, but she got angrier and angrier. She said I was going to be very sorry when she died and then she said "I hope they come and butcher you." Now my mind went to assuming "butcher" was a metaphor for taking me to court for elder abuse, throwing me in jail or something so I simply said, "well, yes if I screw up the court will hold me accountable and I could end up in jail." Clearly I misinterpreted her because she then said, "no you won't. You'll be dead and in little pieces." She has said some pretty awful things to me, but I think this one won the Oscar.
So I got out of there, went to the school to finish my volunteer work, got stuck in a rain storm on the way home, came home to a cat vomiting all over the place and put on a brave face for my daughter who needed nothing but joy today. We got errands done and I bought her the toy she's been eyeing for having such a good day at school. My son got a CD he's been wanting. We got some new books and traded in some old toys for some new clothes. Now the littles are sleeping peacefully.
I've said before that I view crying as a luxury you can only afford when you have time. I think tonight I'll have to make time.
My daughter has been struggling with her teacher this year and it became obvious very quickly there was no way she could stay in this teacher's classroom. I felt I was unable to communicate with this teacher in any way. It left me feeling like I should return my diploma for my communications degree. My daughter was so stressed her behavior became erratic and she refused to do just about anything asked of her. Finally she was moved into another classroom today and so far seems to be happy and relaxed again.
My son thankfully, is doing great in the 4th grade and he has a teacher who really seems to get him (she loves that he loves to give you the play by play of his favorite show). After such a rough year last year for him this much needed for all of us, especially him.
I was thankful I had the time this week to help my children. I feel like with my mother's illness they often get only small strips of me, when they really deserve whole chunks.
So today, after making sure my daughter was comfortable in her classroom I had to turn my attention back to my mother. She had a dentist appointment today to restore her tooth and prep it for the temporary crown. You may remember she had a root canal last week. She did great for both appointments, but this morning she was acting strange. She was telling me about how there were motors in the beds that flip you out in the middle of the night and that a guy who lives upstairs (still an all female facility) died because he became trapped in the bed. And she went on and on about how her psychiatrist was having the med techs overdose her so she would die and that the housekeeper was saying her room was filthy and if my mother didn't clean it up she would be evicted and then the housekeeper could have her room. Her room was pretty much immaculate when I was there. Okay I think maybe the comb had a strand of hair stuck in it. And she had an incident a week ago where she fell out of bed and they weren't really sure what happened. I found the med tech today who helped mom and she said she fell in between the wall and the bed and got stuck, but the bed is now pushed against the wall and that should solve the problem.
So in true tag team style I texted my sister while I was in the waiting room during mom's time at the dentist to please call the doctor and I described the delusions to her. Her next appointment wasn't for two weeks so it couldn't wait that long. She called and doctor decided to increase the dose and sent a fax to the assisted living. Of course he didn't sign it or make it clear so the facility refused to honor it and we ended in a circle of faxes and voice mails again. Things didn't happen so her dose won't be increased until Monday at the earliest. Are you as annoyed as I am right now?
So I decided to clean up my mom's nails while I was there and had time and she couldn't stop talking about how she was going to die if her meds were increased and that the bed was going to crush her. I assured her the bed would not hurt her, but she got angrier and angrier. She said I was going to be very sorry when she died and then she said "I hope they come and butcher you." Now my mind went to assuming "butcher" was a metaphor for taking me to court for elder abuse, throwing me in jail or something so I simply said, "well, yes if I screw up the court will hold me accountable and I could end up in jail." Clearly I misinterpreted her because she then said, "no you won't. You'll be dead and in little pieces." She has said some pretty awful things to me, but I think this one won the Oscar.
So I got out of there, went to the school to finish my volunteer work, got stuck in a rain storm on the way home, came home to a cat vomiting all over the place and put on a brave face for my daughter who needed nothing but joy today. We got errands done and I bought her the toy she's been eyeing for having such a good day at school. My son got a CD he's been wanting. We got some new books and traded in some old toys for some new clothes. Now the littles are sleeping peacefully.
I've said before that I view crying as a luxury you can only afford when you have time. I think tonight I'll have to make time.
Saturday, September 17, 2011
In Heath, but Not in Sickness.....
If you've known me for a while or been reading for a while one thing you may remember about my mom is that she loves Pat Robertson. She used to tell me all the time about how she met him a few times (he lives 30 minutes from where I grew up and down the street from my house currently) and how he laid his hands on me and prayed over me when I was a baby. I'd love to ask him what he prayed for.
Mom also loved to tell the story about the day she got in her brown hatchback and decided she was going to go drive up to Pat's house. It had just been built so I guess she was thinking she could get a tour. She tells of how she drove down his long driveway past several gardeners working on the grounds who all stopped to stare at her. Halfway down the driveway she says she realized he might think she was crazy if she showed up unannounced so she turned around driving over part of his lovely manicured lawn I presume and tried to leave. She heard a scraping sound so she got out of the car and found a stick wedged in her wheel well. The end of the stick had sharpened itself into a very sharp point. She yanked it and and for some weird reason threw it in the backseat. Shortly after she got home, she saw my brother with the stick as he was fashioning it into a bow and arrow set. That made mom think that God wanted her there in that drive way to bring that stick home to her son. Now when I would hear that story I would often think why would God want you to trespass on someone's property to create a very sharp stick to give to your son who was about five years old at the time? I guess it's a mystery I will never solve. God works in mysterious ways.
My mom would spend hours talking with the "counselors" at the 700 Club and often end up in yelling matches with the poor person on the other line. This was a daily occurrence in our house for many years. I found her membership card to the club in her house while cleaning out her things last week. It amazes me that even though she called every day for years they never could get her first name right on the card. They call her "Amelia" to this day in any mail they send. For those of you who aren't in the know that isn't even close to her real name.
But if you've watched the news recently Pat Robertson told an audience member that if a man's wife had end stage Alzheimer's disease (a form of dementia - my mom has a different form of the same disease) he should be allowed to divorce and move on with his life (I'm paraphrasing it to emphasize the evil I feel is implied). Now I get it's horrible to deal with someone who has Alzheimer's or any form of dementia. I'm all too familiar with it. My Great-Grandfather died of Alzheimer's. We believe my Great-Grandmother suffered from Dementia towards the end of her life. My Grandfather developed Dementia towards the end of his battle with Emphysema. My Great-Aunt is living with Dementia. I see the bulls-eye on my head already. And I certainly wouldn't want to lay blame on someone for wanting out of that situation. I'm certainly not blaming anyone from deciding they've had enough, but as with anything, there are consequences for those actions.
It almost seems to Pat that the greater crime would be to have a relationship out of marriage, then to divorce someone in their hour of need for your own self preservation. I don't think he even realizes that when it comes to severe illness the well spouse may end up destroying what little life is left for their loved one by initiating a divorce. It could cause the sufferer to lose insurance, may reduce the quality of care if the sufferer no longer has someone looking out for them and may make the sufferer's life that much worse during their final years on this earth. If it were me suffering from dementia and I was to the point that I didn't recognize my own husband I would say throw me in front of The Tide to end it quickly. Otherwise I can't speak for myself so I need you. Sleep with anyone you want if you need that, but don't leave me in my hour of need.
I can see where Pat was kinda coming from. It is awful and the poor man was suffering too, but if you preach marriage is sacred and condemn divorce then you can't then go say "oh, but if it's too hard it's okay to jump ship." Just don't be a hypocrite about it all. And for the record I'm not against divorce. I think we run to it too quickly when things go wrong instead of working on relationships, but if that's what a couple chooses I would never stand in their way or make them feel guilty for choosing that option. But there's something extra sleazy about someone who divorces their spouse because he/she got sick.
Remember Andrea Yates? She killed her children because the voices in her head told her to do so. Her husband, while knowing how sick she was demanded she home-school their children and said how deeply religious he was. When she went prison and was awaiting trial he divorced her. Now I know that was a hard decision to make, but I wonder if he ever considered that his wife that he loved enough to father children with still needed someone to care about her. Does anyone clip her toenails when they get so long they dig into her shoes? Does anyone make sure the mental hospital she resides in bathes her when she needs it and treats her like a human being?
Of course I've had a great crisis with my view of God for many years. He just seems to want to dump on our family. It would be nice if he could spread the wealth a bit from time to time. But that's for another post.
I wrote an angry email to Pat Robertson and below is the email his rep sent. At the very bottom you can see my original email to them. You decide what you think. Maybe I'm just too angry about my own situation to give anyone a break on theirs. I own that and embrace that fault. Dementia, in it's many forms, sucks. And I've received more than my share of experiences with it. When my mother calls me names and tells me I never visit, or I never do anything for her, or I don't care enough for her it feels like a knife through my heart. But I can't trade her in for a new mom and walk away. The world just doesn't work that way. And I hope to God it never does. The world just wouldn't be worth living in if people became disposable like a CD when it starts to skip.
Thank you for sharing your concern about Pat Robertson's response to a Bring It On question about a friend's wife in the late stages of Alzheimer's.
Having had many close friends struggle through Alzheimer's, Pat has seen the devastating impact that it has on not only the spouse with the disease, but especially the caregiver whose quality of life also becomes completely debilitated by it.
The advice he offered was meant for only the most extreme cases, where the spouse is in the advanced stages of the disease (such as the woman in the letter) and the mental health of the caregiver is also at risk.
Pat acknowledges that this is a hard thing, saying, "This is an ethical question that is beyond my call." He also said, "Get some ethicist besides me to give you the answer, because I recognize the dilemma."
We are including below the complete transcript, which we hope will clarify Pat's answer.
Transcript
The 700 Club Daily Broadcast
Tuesday, September 13, 2011
BRING IT ON
TERRY MEEUWSEN: Well, we have your questions from our chat room, and we'd like to take some time to address them now. Pat, this is Andreas, who says, "I have a friend whose wife suffers from Alzheimer's. She doesn't even recognize him anymore. And as you can imagine, the marriage has been rough. My friend has gotten bitter at God for allowing his wife to be in that condition, and now he has started seeing another woman. He says that he should be allowed to see other people because his wife, as he knows her, is gone. I'm not quite sure what to tell him. Please help."
PAT ROBERTSON: That is a terribly hard thing. I hate Alzheimer's. It is one of the most awful things, because here is the loved one. This is the woman or man that you have loved for 20, 30, 40 years, and suddenly that person is gone. They're gone. They are gone. So what he says, basically, is correct. I know it sounds cruel, but if he is going to do something, he should divorce her and start all over again, but to make sure she has custodial care and somebody looking after her.
TERRY MEEUWSEN: But isn't that the vow we take when we marry someone, that it's for better, for worse, for richer, for poorer?
PAT ROBERTSON: I know, if you respect that vow. But you say, "To death do us part," and this is a kind of a death. So that's what he is saying, is that she's like-but this is an ethical question that is beyond my can do to tell you. But I certainly wouldn't put a guilt trip on you if you decided that you had to have companionship, you're lonely, and you're asking for some companionship. But what a grief. I know one man who went to see his wife every single day, and she didn't recognize him one single day. And she would complain that he never came to see her. And it's really hurtful, because they say crazy things.
TERRY MEEUWSEN: Well, they see things, too.
PAT ROBERTSON: She finally died. I don't know what he's done. But nevertheless, it is a terribly difficult thing for somebody. And I can't fault them for wanting some kind of companionship. And if he says in a sense, she is gone, he is right. It's like a walking death. But get some ethicist besides me to give you the answer, because I recognize the dilemma, and the last thing I would do is condemn you for taking that kind of action. All right.
The Christian Broadcasting Network
http://www.cbn.com/
Prayer Center: 1-800-759-0700
> On 14-Sep-2011 22:17:21 CBN.com wrote:
> CBN.com Feedback - Other
> ----------------------------------------------------------------
> Subject: Alzheimers
>
> I am so angry. I can't believe that Pat Robertson would say someone gets a pass on morality just because his/her spouse has dementia. My mother has schizophrenia and dementia. She made the decision to divorce my father, but if it had been the other way around I would never ever forgive him. My mother loved you guys. I saw a taping as a child, my mother tells me I was blessed by Pat as a baby. She spent hours on the phone with your "counselors." My life is hell now because of her illness. No, I can't trade her in for a new "mom." Morality doesn't end when times are tough.
>
Mom also loved to tell the story about the day she got in her brown hatchback and decided she was going to go drive up to Pat's house. It had just been built so I guess she was thinking she could get a tour. She tells of how she drove down his long driveway past several gardeners working on the grounds who all stopped to stare at her. Halfway down the driveway she says she realized he might think she was crazy if she showed up unannounced so she turned around driving over part of his lovely manicured lawn I presume and tried to leave. She heard a scraping sound so she got out of the car and found a stick wedged in her wheel well. The end of the stick had sharpened itself into a very sharp point. She yanked it and and for some weird reason threw it in the backseat. Shortly after she got home, she saw my brother with the stick as he was fashioning it into a bow and arrow set. That made mom think that God wanted her there in that drive way to bring that stick home to her son. Now when I would hear that story I would often think why would God want you to trespass on someone's property to create a very sharp stick to give to your son who was about five years old at the time? I guess it's a mystery I will never solve. God works in mysterious ways.
My mom would spend hours talking with the "counselors" at the 700 Club and often end up in yelling matches with the poor person on the other line. This was a daily occurrence in our house for many years. I found her membership card to the club in her house while cleaning out her things last week. It amazes me that even though she called every day for years they never could get her first name right on the card. They call her "Amelia" to this day in any mail they send. For those of you who aren't in the know that isn't even close to her real name.
But if you've watched the news recently Pat Robertson told an audience member that if a man's wife had end stage Alzheimer's disease (a form of dementia - my mom has a different form of the same disease) he should be allowed to divorce and move on with his life (I'm paraphrasing it to emphasize the evil I feel is implied). Now I get it's horrible to deal with someone who has Alzheimer's or any form of dementia. I'm all too familiar with it. My Great-Grandfather died of Alzheimer's. We believe my Great-Grandmother suffered from Dementia towards the end of her life. My Grandfather developed Dementia towards the end of his battle with Emphysema. My Great-Aunt is living with Dementia. I see the bulls-eye on my head already. And I certainly wouldn't want to lay blame on someone for wanting out of that situation. I'm certainly not blaming anyone from deciding they've had enough, but as with anything, there are consequences for those actions.
It almost seems to Pat that the greater crime would be to have a relationship out of marriage, then to divorce someone in their hour of need for your own self preservation. I don't think he even realizes that when it comes to severe illness the well spouse may end up destroying what little life is left for their loved one by initiating a divorce. It could cause the sufferer to lose insurance, may reduce the quality of care if the sufferer no longer has someone looking out for them and may make the sufferer's life that much worse during their final years on this earth. If it were me suffering from dementia and I was to the point that I didn't recognize my own husband I would say throw me in front of The Tide to end it quickly. Otherwise I can't speak for myself so I need you. Sleep with anyone you want if you need that, but don't leave me in my hour of need.
I can see where Pat was kinda coming from. It is awful and the poor man was suffering too, but if you preach marriage is sacred and condemn divorce then you can't then go say "oh, but if it's too hard it's okay to jump ship." Just don't be a hypocrite about it all. And for the record I'm not against divorce. I think we run to it too quickly when things go wrong instead of working on relationships, but if that's what a couple chooses I would never stand in their way or make them feel guilty for choosing that option. But there's something extra sleazy about someone who divorces their spouse because he/she got sick.
Remember Andrea Yates? She killed her children because the voices in her head told her to do so. Her husband, while knowing how sick she was demanded she home-school their children and said how deeply religious he was. When she went prison and was awaiting trial he divorced her. Now I know that was a hard decision to make, but I wonder if he ever considered that his wife that he loved enough to father children with still needed someone to care about her. Does anyone clip her toenails when they get so long they dig into her shoes? Does anyone make sure the mental hospital she resides in bathes her when she needs it and treats her like a human being?
Of course I've had a great crisis with my view of God for many years. He just seems to want to dump on our family. It would be nice if he could spread the wealth a bit from time to time. But that's for another post.
I wrote an angry email to Pat Robertson and below is the email his rep sent. At the very bottom you can see my original email to them. You decide what you think. Maybe I'm just too angry about my own situation to give anyone a break on theirs. I own that and embrace that fault. Dementia, in it's many forms, sucks. And I've received more than my share of experiences with it. When my mother calls me names and tells me I never visit, or I never do anything for her, or I don't care enough for her it feels like a knife through my heart. But I can't trade her in for a new mom and walk away. The world just doesn't work that way. And I hope to God it never does. The world just wouldn't be worth living in if people became disposable like a CD when it starts to skip.
Thank you for sharing your concern about Pat Robertson's response to a Bring It On question about a friend's wife in the late stages of Alzheimer's.
Having had many close friends struggle through Alzheimer's, Pat has seen the devastating impact that it has on not only the spouse with the disease, but especially the caregiver whose quality of life also becomes completely debilitated by it.
The advice he offered was meant for only the most extreme cases, where the spouse is in the advanced stages of the disease (such as the woman in the letter) and the mental health of the caregiver is also at risk.
Pat acknowledges that this is a hard thing, saying, "This is an ethical question that is beyond my call." He also said, "Get some ethicist besides me to give you the answer, because I recognize the dilemma."
We are including below the complete transcript, which we hope will clarify Pat's answer.
Transcript
The 700 Club Daily Broadcast
Tuesday, September 13, 2011
BRING IT ON
TERRY MEEUWSEN: Well, we have your questions from our chat room, and we'd like to take some time to address them now. Pat, this is Andreas, who says, "I have a friend whose wife suffers from Alzheimer's. She doesn't even recognize him anymore. And as you can imagine, the marriage has been rough. My friend has gotten bitter at God for allowing his wife to be in that condition, and now he has started seeing another woman. He says that he should be allowed to see other people because his wife, as he knows her, is gone. I'm not quite sure what to tell him. Please help."
PAT ROBERTSON: That is a terribly hard thing. I hate Alzheimer's. It is one of the most awful things, because here is the loved one. This is the woman or man that you have loved for 20, 30, 40 years, and suddenly that person is gone. They're gone. They are gone. So what he says, basically, is correct. I know it sounds cruel, but if he is going to do something, he should divorce her and start all over again, but to make sure she has custodial care and somebody looking after her.
TERRY MEEUWSEN: But isn't that the vow we take when we marry someone, that it's for better, for worse, for richer, for poorer?
PAT ROBERTSON: I know, if you respect that vow. But you say, "To death do us part," and this is a kind of a death. So that's what he is saying, is that she's like-but this is an ethical question that is beyond my can do to tell you. But I certainly wouldn't put a guilt trip on you if you decided that you had to have companionship, you're lonely, and you're asking for some companionship. But what a grief. I know one man who went to see his wife every single day, and she didn't recognize him one single day. And she would complain that he never came to see her. And it's really hurtful, because they say crazy things.
TERRY MEEUWSEN: Well, they see things, too.
PAT ROBERTSON: She finally died. I don't know what he's done. But nevertheless, it is a terribly difficult thing for somebody. And I can't fault them for wanting some kind of companionship. And if he says in a sense, she is gone, he is right. It's like a walking death. But get some ethicist besides me to give you the answer, because I recognize the dilemma, and the last thing I would do is condemn you for taking that kind of action. All right.
The Christian Broadcasting Network
http://www.cbn.com/
Prayer Center: 1-800-759-0700
> On 14-Sep-2011 22:17:21 CBN.com wrote:
> CBN.com Feedback - Other
> ----------------------------------------------------------------
> Subject: Alzheimers
>
> I am so angry. I can't believe that Pat Robertson would say someone gets a pass on morality just because his/her spouse has dementia. My mother has schizophrenia and dementia. She made the decision to divorce my father, but if it had been the other way around I would never ever forgive him. My mother loved you guys. I saw a taping as a child, my mother tells me I was blessed by Pat as a baby. She spent hours on the phone with your "counselors." My life is hell now because of her illness. No, I can't trade her in for a new "mom." Morality doesn't end when times are tough.
>
Tuesday, September 13, 2011
Conservatorship! The fun is only beginning
Ah, Conservatorship! I fought very hard to take control of my mom's finances. It couldn't be that hard, right? And I would sleep easier at night knowing her phone, electricity, gas etc weren't cut off during the worst weather possible.
Well, it isn't as glamorous as it sounds. Although I know you all envy me. I have a report due in a few weeks of the inventory of all her assets. First the court forgot to assign me a commissioner of accounts. I wandered blindly for two and a half months before the mistake was discovered. Then I find out I have to pay several hundred dollars for a lawyer to audit me. Fun, fun. When mom still owes me thousands for paying medical, legal, insurance, grocery bills she couldn't afford this is just icing on the cake. Yippee! Thankfully the clerk reminded me if the order appointing me as conservator doesn't require certain things to be done I don't have to do it. So I can make up numbers for just about everything. Except they require me to have the house appraised. I'm having her jewelry looked at to see if anything is worth appraising there. That's if I find two minutes to even get that all set up.
Since I sued for Guardianship and Conservatorship without a lawyer (since my money tree burned down) I feel like I've been flying blind. In the next month the inventory is due and in December my initial 4 month financial report is due. When I asked the lawyer for guidance on a few things his response was "if you have concerns you should contact a lawyer." Aw, thanks! You're such a big help!
Things are better financially for my mother. She has Medicare Parts A, B and D. Yippee!!! For the next year she has alimony and social security. The alimony ends in a year. My plan is to have her house sold by then or we'll have some big problems. But now is the time to get the extras done. I took her to a dentist last week and she needs major dental work. She's never taken care of her teeth. She began to lose them in her 40s. Half of the teeth she has are implants.
My younger sister and I had to make some tough decisions on what to do with her teeth. One tooth can be saved, but will require about $2000+ worth of work. There are 3 other cavities which will cost a few hundred and one tooth that is beyond saving and will have to be pulled by an oral surgeon. We can space it out and the regular dentist's office (the initial work must be done by an endodontist) has said they will work with me on the bill as best they can. He will do the crown and cavity fills once we get to that point. The dentist was concerned that if they started work on the expensive tooth she may become non compliant and refuse to let them finish the work (it will take about 3 visits or so to complete). That would end up making the work done pointless and then we'll have to have it pulled instead. In the end my sister and I decided to go for it. Might as well save the tooth if possible and it's between two implants so really there was no option left other than pulling it and leaving a gap. She has been complaining for months about that tooth and seems highly motivated to get that one fixed. And the Aricept seems to be helping her understand what she needs to do.
I have one piece of advice for all of you reading. Brush your teeth ladies and gentlemen.
Today I had to pay $350 for the house to be appraised. I can't help but think, do these people who make these rules about conservatorship understand that every penny I spend on appraisals, report fees and audits take away from the money to pay for her medical care? She isn't a millionaire. The money will run out sooner or later. I know I have to be watched or I could just run away with everything, but it just saddens me to spend money on things that don't directly help her.
So I'm a bit frazzled. And with all that I have the Guardianship duties I share with my younger sister. That requires a short report due sometime between October and December we think (they give us such awesome concise instructions, ya know!).
And all my volunteer jobs are still ongoing. I love them all. If I didn't have something to distract me from all of the stuff from my mom I think I would seriously go crazy. I'd have to turn to alcohol! Or knitting, gah!
If I know you in real life please give me some patience. I definitely won't be at my best, but I assure you I won't be at my worst. And you can always sneak me a shot just in case.
Well, it isn't as glamorous as it sounds. Although I know you all envy me. I have a report due in a few weeks of the inventory of all her assets. First the court forgot to assign me a commissioner of accounts. I wandered blindly for two and a half months before the mistake was discovered. Then I find out I have to pay several hundred dollars for a lawyer to audit me. Fun, fun. When mom still owes me thousands for paying medical, legal, insurance, grocery bills she couldn't afford this is just icing on the cake. Yippee! Thankfully the clerk reminded me if the order appointing me as conservator doesn't require certain things to be done I don't have to do it. So I can make up numbers for just about everything. Except they require me to have the house appraised. I'm having her jewelry looked at to see if anything is worth appraising there. That's if I find two minutes to even get that all set up.
Since I sued for Guardianship and Conservatorship without a lawyer (since my money tree burned down) I feel like I've been flying blind. In the next month the inventory is due and in December my initial 4 month financial report is due. When I asked the lawyer for guidance on a few things his response was "if you have concerns you should contact a lawyer." Aw, thanks! You're such a big help!
Things are better financially for my mother. She has Medicare Parts A, B and D. Yippee!!! For the next year she has alimony and social security. The alimony ends in a year. My plan is to have her house sold by then or we'll have some big problems. But now is the time to get the extras done. I took her to a dentist last week and she needs major dental work. She's never taken care of her teeth. She began to lose them in her 40s. Half of the teeth she has are implants.
My younger sister and I had to make some tough decisions on what to do with her teeth. One tooth can be saved, but will require about $2000+ worth of work. There are 3 other cavities which will cost a few hundred and one tooth that is beyond saving and will have to be pulled by an oral surgeon. We can space it out and the regular dentist's office (the initial work must be done by an endodontist) has said they will work with me on the bill as best they can. He will do the crown and cavity fills once we get to that point. The dentist was concerned that if they started work on the expensive tooth she may become non compliant and refuse to let them finish the work (it will take about 3 visits or so to complete). That would end up making the work done pointless and then we'll have to have it pulled instead. In the end my sister and I decided to go for it. Might as well save the tooth if possible and it's between two implants so really there was no option left other than pulling it and leaving a gap. She has been complaining for months about that tooth and seems highly motivated to get that one fixed. And the Aricept seems to be helping her understand what she needs to do.
I have one piece of advice for all of you reading. Brush your teeth ladies and gentlemen.
Today I had to pay $350 for the house to be appraised. I can't help but think, do these people who make these rules about conservatorship understand that every penny I spend on appraisals, report fees and audits take away from the money to pay for her medical care? She isn't a millionaire. The money will run out sooner or later. I know I have to be watched or I could just run away with everything, but it just saddens me to spend money on things that don't directly help her.
So I'm a bit frazzled. And with all that I have the Guardianship duties I share with my younger sister. That requires a short report due sometime between October and December we think (they give us such awesome concise instructions, ya know!).
And all my volunteer jobs are still ongoing. I love them all. If I didn't have something to distract me from all of the stuff from my mom I think I would seriously go crazy. I'd have to turn to alcohol! Or knitting, gah!
If I know you in real life please give me some patience. I definitely won't be at my best, but I assure you I won't be at my worst. And you can always sneak me a shot just in case.
Thursday, September 8, 2011
So if there were any doubt the title of my blog rings true...
Being Guardian for your mother is always a challenge. No way to make it easy. It isn't something that you just fit in here and there as you have time. It's pretty much a full time job. Thankfully I have my younger sister to share the responsibility, but still it's difficult.
Today was one of those difficult days.
It was a good day for my mom. She was mentally alert and able to understand directions and answer questions. She saw her eye doctor this morning and she seemed to really understand what was going on. Those have been rare so I really love the days where she is truly present.
Of course things must be equaled out by administrative garbage. Because of the assisted living center's rules I must provide a prescription for everything a doctor wants to have them do. Artificial Tears, Tylenol, antibiotic ointment, lip balm you name it requires a prescription. This has been a challenge because many of the doctors are moving to electronic prescriptions. I now have to get them to write out scripts to give to the assisted living. Just an extra step. Mom has one doctor who consistently refuses to sign things because he feels a print out should be good enough. And it isn't so I have to deal with it all when I get mom back to the facility.
Well today I was informed after 3 months of her living there that the doctor not only needs to write a prescription for any drug changes the doctors also have to write what condition they are giving the drug for on the prescription. Since the doctors don't routinely do it, despite the medical director claiming it was regulations, I had to hear about how they should know this. Like I can do anything about the knowledge contents of their brains. And I hear this over and over from BOTH SIDES! What crazy conflicting regulations are they citing? Oh, yeah, that's right. I'm in Virginia. Of course it's a mess!
They must just think everyone is psychic. Well, sorry guys. My psychic ability is in the shop. I don't think it will be fixed anytime soon.
Plus I've been hearing about for months how the doctors also have to sign their med order sheets. I don't know why a prescription with his/her signature isn't good enough, but apparently it isn't. And I was hearing about how she's been faxing it off for months to try to get my mom's doctor to sign it. Well the doctor was the one she saw in the hospital and doesn't see her anymore. And didn't prescribe half the drugs on the sheet. Of course he's not going to sign it. She tried mom's other doctors. The primary doctor won't sign it because the list includes medications from the psychiatrist and the psychiatrist won't sign it because it includes medications he didn't prescribe. It all makes me want to scream! Is it really that hard? I don't blame the doctors. I get why they won't sign it, but geez y'all need to get it together and make something work!
So if you ever doubted why I named my blog "Everyone's a Little Bit Crazy" doubt no more. Although I'm starting to think I should rename it "Everyone's a Whole Heap of Crazy."
Well, maybe someone in the world is completely sane. If I find him or her I'll let you know. Don't hold your breath.
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