the last year.
This blog is long over due but I have been avoiding it. Partially maybe because I want to deny it but it keeps rolling around in my head and it makes me extremely sad. I've always given myself the advice to "stop thinking" and don't let life get you down, the more you analyze something the more life you give it, the worse it becomes. So I've stuck my head in the sand for the last 3 months or so...and every time I peek out I regret it.
Recapping last blog, mom had a possible miracle, we were headed to a Neurosurgeon hoping to get a shunt placed and mom would be back to normal right. WRONG. The doctor's visit was a disaster, the worst actually. He suspected she had been misdiagnosed and to spare everyone the details he was a complete ass about it. I have never been so mad in my life, not just because he took my miracle away but because he was so mean, literally he acted as if my mother was a waste of space. I looked at him in tears at the end of the very rushed appointment and asked him what he would suggest we do now and his response was a cold " I would consider a nursing home." right in front of my mom, whom he had spoken all of two words to the entire appointment. I wanted to punch him in the face but I bit my lip and made it out to get the car before completely breaking down. I felt bad for my mom who was at that time trying to console me. She told me the entire time we were there I looked like I wanted to smash his face in. Well duh, Don't mess with my mama!
SO that is how I dealt with that appointment. Mom's reaction was a bit more delayed but she gave up and by the end of that week she couldn't even get out of bed or stand up on her own. I had to call an ambulance and have her taken to the ER. But Sinai couldn't find anything medically wrong with her in the ER and they couldn't admit her because of her Medicaid being out of Pennsylvania. We tried to get her switched to Maryland Medicaid and transfer her to a rehab facility but she didn't qualify under MD laws because she had too much money (but not enough money to pay for 2 weeks privately at the nursing home, tell me how the hell that works, our system is so broken.) SO About 60 hours after her admission to the ER, we moved her back to PA, my sister checked her into an ER in Philadelphia in attempts to get her admitted to the hospital and have extensive testing done to find something wrong. At this point mom was completely delusional, she hadn't eaten or slept much at Sinai. She didn't know where she was, who my sister was and she was paranoid people were going to kill her. But still they couldn't find anything medically wrong with my mom. Thankfully they did admit her, she was there for 30 days. And we still had no clear diagnosis. I spoke to many Neurologists and Hospitalists and they all agreed they couldn't put there finger on what was wrong, she did not present as a typical dementia case. Psychiatrists evaluated her but couldn't really treat her in a hospital setting. So again we tried to keep her closer to my sister and I (Eastern PA) when she was discharged but apparently Medicaid is regional in PA and she ended up back in our home town over 6 hours away from her closest advocate. Essentially we are back at Square one. We have no new answers, though the hunch is there that this is all psychological. She went back to her Neurologist there and the recommendation was the same as it was in April, see a Movement specialist Neurologist and have a series of Neuro-psych tests. They are scheduled for October because everything moves at a snails pace.
In the mean time, my mom who was doing very well on the meds they put her on in Philadelphia decided for herself that they made her dizzy and refused them. She started having delusions again, we got calls about her falling out of bed, and telling stories about how she needed to hide from the truck that was coming to deport her. Heartbreaking, but a good example of how her mind is working. I asked them to stop letting her watch the news. I also requested that her doctor put her back on the psych meds she quit and thankfully they have!
Probably worst of the past 2 months is that she has shut everyone out. She will not answer her phone and if you do get her on the phone she only wants to talk for a minute before she "has to go." I miss her.
July 5th was the 1 year anniversary of her first surgery. A lot has happened since then, ups and downs but really I lost my mom that day. My whole life my mom was the one who cared, she knew me and she always gave great advice. I miss being able to call her and her way of always understanding something was wrong from the second I said hello. We didn't always get along but geez mourning your mom who is still alive is HARD. I don't know how many times my sisters and I have had the conversation that goes like this "It is like she just gave up, totally changed... what the hell happened to the woman who raised us"
I am convinced at this point that this is mostly psychological, that she had a psychological break. We look back and see patterns where she got worse when she got bad news or lost hope. The first time was last October, when she went back to square one after her 3rd surgery was postponed. The most recent being when she was told she didn't have the Hydrocephalus. Within a week of both of those incidents she "couldn't walk" a few days later. This isn't something she is faking, her brain is really playing tricks on her. It is impossible to describe but her fight is gone. She wants to do things but she just can't and she is extremely depressed that she cannot go back to her old life but she doesn't have the will to change that. She used to, she never let anything stop her. Where did my tough "old lady" go.
I pray every day that she snaps out of it, that we find the right meds that make her come out of the fog. I try to stay optimistic but deep down I have almost given up. I am grieving over her everyday but she is still alive and I put my trust in God. God can do anything and I hope that someday HE gives my kids their Grammie Lou back.
Recapping last blog, mom had a possible miracle, we were headed to a Neurosurgeon hoping to get a shunt placed and mom would be back to normal right. WRONG. The doctor's visit was a disaster, the worst actually. He suspected she had been misdiagnosed and to spare everyone the details he was a complete ass about it. I have never been so mad in my life, not just because he took my miracle away but because he was so mean, literally he acted as if my mother was a waste of space. I looked at him in tears at the end of the very rushed appointment and asked him what he would suggest we do now and his response was a cold " I would consider a nursing home." right in front of my mom, whom he had spoken all of two words to the entire appointment. I wanted to punch him in the face but I bit my lip and made it out to get the car before completely breaking down. I felt bad for my mom who was at that time trying to console me. She told me the entire time we were there I looked like I wanted to smash his face in. Well duh, Don't mess with my mama!
SO that is how I dealt with that appointment. Mom's reaction was a bit more delayed but she gave up and by the end of that week she couldn't even get out of bed or stand up on her own. I had to call an ambulance and have her taken to the ER. But Sinai couldn't find anything medically wrong with her in the ER and they couldn't admit her because of her Medicaid being out of Pennsylvania. We tried to get her switched to Maryland Medicaid and transfer her to a rehab facility but she didn't qualify under MD laws because she had too much money (but not enough money to pay for 2 weeks privately at the nursing home, tell me how the hell that works, our system is so broken.) SO About 60 hours after her admission to the ER, we moved her back to PA, my sister checked her into an ER in Philadelphia in attempts to get her admitted to the hospital and have extensive testing done to find something wrong. At this point mom was completely delusional, she hadn't eaten or slept much at Sinai. She didn't know where she was, who my sister was and she was paranoid people were going to kill her. But still they couldn't find anything medically wrong with my mom. Thankfully they did admit her, she was there for 30 days. And we still had no clear diagnosis. I spoke to many Neurologists and Hospitalists and they all agreed they couldn't put there finger on what was wrong, she did not present as a typical dementia case. Psychiatrists evaluated her but couldn't really treat her in a hospital setting. So again we tried to keep her closer to my sister and I (Eastern PA) when she was discharged but apparently Medicaid is regional in PA and she ended up back in our home town over 6 hours away from her closest advocate. Essentially we are back at Square one. We have no new answers, though the hunch is there that this is all psychological. She went back to her Neurologist there and the recommendation was the same as it was in April, see a Movement specialist Neurologist and have a series of Neuro-psych tests. They are scheduled for October because everything moves at a snails pace.
In the mean time, my mom who was doing very well on the meds they put her on in Philadelphia decided for herself that they made her dizzy and refused them. She started having delusions again, we got calls about her falling out of bed, and telling stories about how she needed to hide from the truck that was coming to deport her. Heartbreaking, but a good example of how her mind is working. I asked them to stop letting her watch the news. I also requested that her doctor put her back on the psych meds she quit and thankfully they have!
Probably worst of the past 2 months is that she has shut everyone out. She will not answer her phone and if you do get her on the phone she only wants to talk for a minute before she "has to go." I miss her.
July 5th was the 1 year anniversary of her first surgery. A lot has happened since then, ups and downs but really I lost my mom that day. My whole life my mom was the one who cared, she knew me and she always gave great advice. I miss being able to call her and her way of always understanding something was wrong from the second I said hello. We didn't always get along but geez mourning your mom who is still alive is HARD. I don't know how many times my sisters and I have had the conversation that goes like this "It is like she just gave up, totally changed... what the hell happened to the woman who raised us"
I am convinced at this point that this is mostly psychological, that she had a psychological break. We look back and see patterns where she got worse when she got bad news or lost hope. The first time was last October, when she went back to square one after her 3rd surgery was postponed. The most recent being when she was told she didn't have the Hydrocephalus. Within a week of both of those incidents she "couldn't walk" a few days later. This isn't something she is faking, her brain is really playing tricks on her. It is impossible to describe but her fight is gone. She wants to do things but she just can't and she is extremely depressed that she cannot go back to her old life but she doesn't have the will to change that. She used to, she never let anything stop her. Where did my tough "old lady" go.
I pray every day that she snaps out of it, that we find the right meds that make her come out of the fog. I try to stay optimistic but deep down I have almost given up. I am grieving over her everyday but she is still alive and I put my trust in God. God can do anything and I hope that someday HE gives my kids their Grammie Lou back.
Reading this, my heart broke. I can't begin to imagine the fear, aching,, confusion, anger, and just plain agony that you all are feeling. I pray all the time for her, sadly and embarrassingly I have let my own health issues with my husband not reach out to check on her. I am ashamed. Please know that all you girls are in my thoughts and prayers.
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