FYI: I will be leaving tonight on vacation for a few days. I will call Mom twice daily to make sure she takes her meds. I will return Jan 2 and her son will be here to help her while I'm gone. She has food in the fridge in serving sizes to heat up, clean clothes, clean dishes, and arrangements are being set up to make it easier for Mom to care for the dogs and have minimal action required on her part. I even have a set up so she can keep them in the house at night without having to bend over to put them in their cages.
She is not taking her medication correctly. I have no idea what she is doing, but she believes she is taking the correct medication at the time and writes it down in the calendar. However, the medication is still in the minders. Last Friday, she took all the pills in 3 minders (so two AM's and one PM's worth) but has no recollection of doing so and refused to let me take her to the hospital. She is lethargic and slow to react/speak. Still waiting on the new medication to come in the mail for primary biliary cirrhosis. She thinks she broke a rib again, but refuses to get an x-ray. She has been eating a lot of volume and less salt than the chinese food (she still keeps adding seasoning to the chicken I make but it's still less than the chinese). Nothing else to report.
Tuesday, December 28, 2010
Thursday, December 23, 2010
Tree Fell On The House....
1. We're okay, so nobody panic. Some already have, and it doesn't help anyone to panic.
2. Our neighbor's tree uprooted today and fell on our roof. It punctured the porch and caused unknown damage to the roof. We were very lucky. It basically rested and was very slowly crushing the roof. Since the insurance company refused to prevent further damage or help in any way, I called the fire department and they came with chainsaws and ladders. They cut up the most dangerous part of the tree that was sitting on the roof. There is another half of the tree that still needs to be cut down, as it is very unstable and will likely fall on the front yard, front of the porch, and fencing. The roof needs inspection, but it appears that no severe damage has been done and we don't appear to be leaking. We are not allowed to be in the front half of the house, use the front door, or be on the front porch, and the front yard is caution-taped off. It was scary and stressful and time consuming. Our house would be cut in half if not for the fire department, so I have to find about 300 cookies. I'm just posting this here because I know people will have questions and hear about it later and I don't want it confused/confusing.
2. Our neighbor's tree uprooted today and fell on our roof. It punctured the porch and caused unknown damage to the roof. We were very lucky. It basically rested and was very slowly crushing the roof. Since the insurance company refused to prevent further damage or help in any way, I called the fire department and they came with chainsaws and ladders. They cut up the most dangerous part of the tree that was sitting on the roof. There is another half of the tree that still needs to be cut down, as it is very unstable and will likely fall on the front yard, front of the porch, and fencing. The roof needs inspection, but it appears that no severe damage has been done and we don't appear to be leaking. We are not allowed to be in the front half of the house, use the front door, or be on the front porch, and the front yard is caution-taped off. It was scary and stressful and time consuming. Our house would be cut in half if not for the fire department, so I have to find about 300 cookies. I'm just posting this here because I know people will have questions and hear about it later and I don't want it confused/confusing.
Sunday, December 19, 2010
Hepatologist Update 12-19-2010
Mom had a hepatologist appointment this week. He told her the reason he's been pushing for a biopsy is to verify a diagnosis he's been suspecting, but a biopsy isn't really possible right now. They tried trans-jugular last year and the guide wires were stuck on a particularly sharp curve around one of her organs, and trans-abdominal won't work with the ascites. There's too much fluid for them to work properly and the risk of infection is greater with ascites. The decision was made to try her on medication for the diagnosis and see if it works. I asked if it would hurt her if she doesn't have the condition it treats, and the doctor assured me it's safe to take. I'm waiting for an envelope from Mom with the address of her mail-in pharmacy on it so that I can send it off tomorrow.
The diagnosis the specialist suspects is called primary biliary cirrhosis. Click the link to read more about it. Basically, it's when the main duct in the liver sort of shrinks and it's treatable. It has a lot of symptoms of every other autoimmune disease she already has, so it's well hidden, but it does explain her tender liver and high alk phos levels. If this medication reduces her alk phos levels, it's a fairly good indication that she does have this type of cirrhosis.
The doctor hopes this medication will help slow the progression of her liver disease and help her liver function more normally. It should also help her to be less confused. If it doesn't help with the confusion, the doc mentioned another medication that can be used in conjunction with what she's already on that isn't helping as much as we'd like it to. She refused to take any medication for a day and a half because she got her days confused, and even after looking at her cell phone today, she swore to me that it was Saturday the 18th and nearly refused to take her night time meds. The good news is that I got a simple recipe for soup from my boyfriend's sister and she actually really likes it. It's just chicken thighs (they have more fat than breasts, and we need to fatten her up) and pinto beans ("no salt added" brings a can from 1590 mg to 30 mg of sodium) and carne asada seasoning which I add in moderation. A whole crock pot is about 2600 mg of sodium and feeds her for four or five days and is loaded with fiber and protein. If she would stop eating food from the Chinese restaurant (the liver specialist said that Chinese restaurants are known for their high salt content), she might be able to get her ascites under control.
The diagnosis the specialist suspects is called primary biliary cirrhosis. Click the link to read more about it. Basically, it's when the main duct in the liver sort of shrinks and it's treatable. It has a lot of symptoms of every other autoimmune disease she already has, so it's well hidden, but it does explain her tender liver and high alk phos levels. If this medication reduces her alk phos levels, it's a fairly good indication that she does have this type of cirrhosis.
The doctor hopes this medication will help slow the progression of her liver disease and help her liver function more normally. It should also help her to be less confused. If it doesn't help with the confusion, the doc mentioned another medication that can be used in conjunction with what she's already on that isn't helping as much as we'd like it to. She refused to take any medication for a day and a half because she got her days confused, and even after looking at her cell phone today, she swore to me that it was Saturday the 18th and nearly refused to take her night time meds. The good news is that I got a simple recipe for soup from my boyfriend's sister and she actually really likes it. It's just chicken thighs (they have more fat than breasts, and we need to fatten her up) and pinto beans ("no salt added" brings a can from 1590 mg to 30 mg of sodium) and carne asada seasoning which I add in moderation. A whole crock pot is about 2600 mg of sodium and feeds her for four or five days and is loaded with fiber and protein. If she would stop eating food from the Chinese restaurant (the liver specialist said that Chinese restaurants are known for their high salt content), she might be able to get her ascites under control.
Tuesday, December 14, 2010
Won the Battle, Lost the War
Fortunately, she stayed down after last night's post.
Unfortunately, through all of this, I asked one simple thing of my mother. The request was for both of our protection, and today she broke her promise. This was not due to confusion or weakness. It was deliberate, completely unnecessary, and inconsiderate of my safety and the vulnerability it exposes me to. I can no longer trust her and no longer feel the need to give of myself in the same way she gave herself to my brother and I growing up. For my own protection, I have to step back from this entire process. I am sorry to those who care for her that I can no longer fulfill the role I have been playing for three and a half years. I was betrayed in a way that is irreparable. I cannot express the disappointment and loss I'm feeling, but honestly, I can't say I'm surprised.
I will continue to perform as her hands when she needs them. This will include laying out her medication (if she wishes), rides to doctors and visitors, and cooking, shopping and cleaning where she cannot. I will no longer encourage her to follow doctor's orders and I will no longer feel the need to fulfill every little request, every little craving, every little thing her heart desires. I will update this site if and when she is hospitalized and for those who care for her, but clearly, it will be less often. She is no longer the focus of my life. If you want to know and there's nothing here; call her. I suggest calling the house as she does not know how to operate her cell phone when she is in a confused episode such as this.
I am truly sorry it has come to this.
Unfortunately, through all of this, I asked one simple thing of my mother. The request was for both of our protection, and today she broke her promise. This was not due to confusion or weakness. It was deliberate, completely unnecessary, and inconsiderate of my safety and the vulnerability it exposes me to. I can no longer trust her and no longer feel the need to give of myself in the same way she gave herself to my brother and I growing up. For my own protection, I have to step back from this entire process. I am sorry to those who care for her that I can no longer fulfill the role I have been playing for three and a half years. I was betrayed in a way that is irreparable. I cannot express the disappointment and loss I'm feeling, but honestly, I can't say I'm surprised.
I will continue to perform as her hands when she needs them. This will include laying out her medication (if she wishes), rides to doctors and visitors, and cooking, shopping and cleaning where she cannot. I will no longer encourage her to follow doctor's orders and I will no longer feel the need to fulfill every little request, every little craving, every little thing her heart desires. I will update this site if and when she is hospitalized and for those who care for her, but clearly, it will be less often. She is no longer the focus of my life. If you want to know and there's nothing here; call her. I suggest calling the house as she does not know how to operate her cell phone when she is in a confused episode such as this.
I am truly sorry it has come to this.
Monday, December 13, 2010
Sundowner Take 2
Mom has been in a downward spiral lately. She was stable and actually losing ascites fluid for a while until this past week. She has been sleeping more, easily confused, stutters when she speaks, and is unstable on her feet. She has been very confused with her medication and hasn't been able to take it by herself for nearly a week. She gets the days and nights confused, and the days of the week confused, and ends up taking Friday nights pills on Tuesday morning unless I watch her. She developed a habit of opening pill bottles and mixing pills in the bottles, and I have no idea what she takes at that point. Last time this happened, it was a bad mix of meds issued by hospice since they had not heard of one of her medications (and apparently didn't bother to look into it before prescribing something that interacted with it). This time, the only idea I have is that her body is building up the meds she's been taking and isn't releasing them. I don't know why that would be now, but she is essentially stoned. I hid her regular meds, but she refuses to even monitor or write down the meds that really make her head fuzzy (the sleeping pill, anxiety pill, pain pill, and nausea med...this nausea med is the one she overdosed on before and is what caused her home health nurse to report her to her doctor and got her onto hospice in the first place).
Yesterday, she overflowed her toilet for the third time. There was quite a mess in the room and I still have a lot of laundry to do. Tonight, she didn't take her meds, and she can't seem to stay down. She keeps walking around the house with her eyes closed. She has been up three times since she said she was going to bed. She tried opening plastic steam bags and when I asked what she was doing, she said she wanted tea. She fell (luckily, on me, so she's not hurt). If she keeps this up tonight, I will have to take her to the hospital or call them to the house to take her in until she detoxes. Maybe it's not her meds and it's something else. Maybe this is just part of the liver failure; some sort of toxic build up that comes and goes in episodes. I have no idea, but I have a feeling the doctors wouldn't do anything but monitor her. The upside to that is that at least she'd have a nurse to keep her safe and maybe they can sedate her. It's called "gentle restraints". Instead of tying her down, they drug her up so she sleeps it off. When she did this last time, she had horrible hallucinations. She sometimes still gets mad at me for being my aunt and keeping her tied to a bed in the basement we don't have. Maybe it's better if she doesn't have such terrifying false memories. Hopefully, this last time I put her in bed will be the last time tonight. I moved her "uncontrolled" meds out her immediate sight, and for now, that's hidden enough such that she won't find them even a foot away from where she normally keeps them.
Yesterday, she overflowed her toilet for the third time. There was quite a mess in the room and I still have a lot of laundry to do. Tonight, she didn't take her meds, and she can't seem to stay down. She keeps walking around the house with her eyes closed. She has been up three times since she said she was going to bed. She tried opening plastic steam bags and when I asked what she was doing, she said she wanted tea. She fell (luckily, on me, so she's not hurt). If she keeps this up tonight, I will have to take her to the hospital or call them to the house to take her in until she detoxes. Maybe it's not her meds and it's something else. Maybe this is just part of the liver failure; some sort of toxic build up that comes and goes in episodes. I have no idea, but I have a feeling the doctors wouldn't do anything but monitor her. The upside to that is that at least she'd have a nurse to keep her safe and maybe they can sedate her. It's called "gentle restraints". Instead of tying her down, they drug her up so she sleeps it off. When she did this last time, she had horrible hallucinations. She sometimes still gets mad at me for being my aunt and keeping her tied to a bed in the basement we don't have. Maybe it's better if she doesn't have such terrifying false memories. Hopefully, this last time I put her in bed will be the last time tonight. I moved her "uncontrolled" meds out her immediate sight, and for now, that's hidden enough such that she won't find them even a foot away from where she normally keeps them.
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