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.
Thursday, November 18, 2010
Hepatologist Update 11-18-2010
We left for the hepatologist at 2:30 pm Tuesday and didn't get home until 8 pm. The liver specialist is over an hour away and we weren't seen for our 4 pm appointment until 5:30 pm. Turns out there was a mystery diagnosis that wasn't given enough time in the schedule and that patient will likely be blind in a few days and for the rest of his life. Reminders of common blessings (like sight) make waiting easier.
The hepatologist said the blood tests indicate that Mom has a lot of salt in her system that isn't leaving. This means that her diet is too salty; she's breaking the strict low-salt 2000mg Na max per day, and this is the source of her ascites fluid as of late. She's looking six months pregnant again, and on her small frame, it's more obvious. He increased the dosage of her water pills and is considering a liver biopsy. They tried a trans-jugular biopsy when she was in the hospital in October of last year, but it failed due to a bizarre curvature in the artery. The guide wires kept curling on themselves, and they couldn't get past one of the organs down to the liver. They won't go through her abdomen with this much fluid or it could cause an infection. If the fluid goes down, they can go through the belly much easier than the neck, but it'll take time.
The doctor said that if it wasn't for Mom's high-salt diet, she wouldn't have ascites, and it's essentially the biggest complication she's experiencing from the liver failure. We are currently looking at her diet and trying to figure out what is so high in salt that it's tipping her over this much. The english muffins she's been downing and the tuna with mayo sandwiches she makes from them aren't that high in salt. The only thing we can guess is the egg drop soup and cream cheese wontons she's been getting from a chinese restaurant lately. She's been downing this soup like crazy lately and the doc says that restaurant soup is worse than canned soup, and canned soup is too high in salt for her to eat (except the low-sodium versions). They actually wrote it in the doctor's notes: "patient advised to stop eating restaurant soup". I guess the stuff is that bad. Who knew? Mom has agreed to stop buying the soup, but she is insisting on finishing the soup she already bought and froze (5 containers at once, froze 3 at the time, and I think she only has one left...). She is having problems coming up with low-salt or salt-free foods that sound appetizing to her.
The primary doctor previously said they would try to get her the Aciphex for her acid controller medication and push it through the insurance for approval. They haven't done that yet, and the samples they gave ran out. They told her Tuesday that they would set aside more samples for me to pick up, and then told her today that they gave them away instead. She will be on Prilosec until we can afford to put her on Aciphex. Seeing as how I'm still unemployed, and we're not sure what the insurance is changing to next year (her retirement group plan is being dropped by the current company and it's unclear what will really happen with the new company and plan), I'm not sure that she will be on Aciphex any time soon.
She will be 54 years old tomorrow. My boyfriend and I plan on taking her out to wherever she wants to go, if she feels up to it. It may well be a lovely dinner from Red Lobster enjoyed from the comfort of her own bed.
The hepatologist said the blood tests indicate that Mom has a lot of salt in her system that isn't leaving. This means that her diet is too salty; she's breaking the strict low-salt 2000mg Na max per day, and this is the source of her ascites fluid as of late. She's looking six months pregnant again, and on her small frame, it's more obvious. He increased the dosage of her water pills and is considering a liver biopsy. They tried a trans-jugular biopsy when she was in the hospital in October of last year, but it failed due to a bizarre curvature in the artery. The guide wires kept curling on themselves, and they couldn't get past one of the organs down to the liver. They won't go through her abdomen with this much fluid or it could cause an infection. If the fluid goes down, they can go through the belly much easier than the neck, but it'll take time.
The doctor said that if it wasn't for Mom's high-salt diet, she wouldn't have ascites, and it's essentially the biggest complication she's experiencing from the liver failure. We are currently looking at her diet and trying to figure out what is so high in salt that it's tipping her over this much. The english muffins she's been downing and the tuna with mayo sandwiches she makes from them aren't that high in salt. The only thing we can guess is the egg drop soup and cream cheese wontons she's been getting from a chinese restaurant lately. She's been downing this soup like crazy lately and the doc says that restaurant soup is worse than canned soup, and canned soup is too high in salt for her to eat (except the low-sodium versions). They actually wrote it in the doctor's notes: "patient advised to stop eating restaurant soup". I guess the stuff is that bad. Who knew? Mom has agreed to stop buying the soup, but she is insisting on finishing the soup she already bought and froze (5 containers at once, froze 3 at the time, and I think she only has one left...). She is having problems coming up with low-salt or salt-free foods that sound appetizing to her.
The primary doctor previously said they would try to get her the Aciphex for her acid controller medication and push it through the insurance for approval. They haven't done that yet, and the samples they gave ran out. They told her Tuesday that they would set aside more samples for me to pick up, and then told her today that they gave them away instead. She will be on Prilosec until we can afford to put her on Aciphex. Seeing as how I'm still unemployed, and we're not sure what the insurance is changing to next year (her retirement group plan is being dropped by the current company and it's unclear what will really happen with the new company and plan), I'm not sure that she will be on Aciphex any time soon.
She will be 54 years old tomorrow. My boyfriend and I plan on taking her out to wherever she wants to go, if she feels up to it. It may well be a lovely dinner from Red Lobster enjoyed from the comfort of her own bed.
Thursday, November 11, 2010
Confirmation
I spoke with Mom's doctor's office and confirmed some of the information she gave me. She did have an old, healed rib-break on the x-ray, and her alkaline phosphatase level was extremely elevated. The nurse said that her BUN is high normal and her albumin levels were below normal, but higher than they've been in quite some time. Mom thinks this means she is no longer dehydrated or malnourished. These results are marked improvements on her previous blood levels, but they do not mean she is healthy. The pre-albumin level is more indicative of recent health and I will ask that to be added to the next bloodwork they draw. Mom has since told me something confusing about them retesting the blood and her alk phos wasn't as high, but when I asked if it was a retest on the same bloodwork (such that the first results were mistaken), she said no, but she hasn't had any more blood drawn. I don't know what she thinks happened, and when I ask her, she is too tired to explain and becomes frustrated with nobody understanding her. I'm sure I'll speak to the doctor's office again soon, and I'll ask if they know what she's talking about at that point.
Her doctor is trying to get her on Aciphex again. This is the medication that controls her stomach acid. She has been on every medication at various doses over the years, and Aciphex is the only one that worked (and at twice the FDA-recommended dosage). Her insurance stopped paying for it January 1, 2010, and we haven't had the money to pay for cash for it. It's about $800 per month for this particular medication if you pay cash. She has been on Prilosec this year, and they raised the dosage with no effect, so the hope is that we can petition the insurance to pay for the medication seeing as how nothing else works for her. Oftentimes, because of the backwards sort of way Mom's internal organs work, antacid medications cause her stomach to produce more acid than nothing at all. Aciphex is the first medication that has worked on Mom's GERD in years, so hopefully we can get her back on it.
At this point, it is up to Mom if she wants to be tapped again. Paracentesis is a procedure that removes the ascites fluid from her belly, which will lessen the pressure and make her more comfortable, but it is generally avoided if possible. The more you tap. the more often you need to be tapped and this makes doctors uncomfortable. It is not a good cycle to get into and doctors hold off on this until it is absolutely necessary. There is also a risk of infection associated with tapping and Mom has a barely-existent immune system.
Mom started to refill her own medication box two weeks ago. I check it for her to make sure she has the right medications and dosages in the right time slots. She gets a few things confused sometimes, but it makes her feel more in control of her own medicine and medical care and I make sure whatever mistakes are corrected. It seems to be a good system so that she feels more in control but doesn't suffer from mistakes she might make, which relieves the rest of us from worrying about what she's taking. She is also logging everything she takes and she agreed to start logging her pain and sleeping meds as well. This reduces the chance that any medical issues she has in the future would be misdiagnosed as overdoses and indicate inappropriate treatment, and would easily identify an overdose if she did.
Her birthday is next week, if anyone is interested in calling and wishing her well. She always says she hates her birthday and flowers and attention, but in truth, it makes her feel loved. We will be taking her out to a lunch/dinner if she feels up to it. It's always hard to make someone feel good when they always feel so physically bad. She will be 54.
Her doctor is trying to get her on Aciphex again. This is the medication that controls her stomach acid. She has been on every medication at various doses over the years, and Aciphex is the only one that worked (and at twice the FDA-recommended dosage). Her insurance stopped paying for it January 1, 2010, and we haven't had the money to pay for cash for it. It's about $800 per month for this particular medication if you pay cash. She has been on Prilosec this year, and they raised the dosage with no effect, so the hope is that we can petition the insurance to pay for the medication seeing as how nothing else works for her. Oftentimes, because of the backwards sort of way Mom's internal organs work, antacid medications cause her stomach to produce more acid than nothing at all. Aciphex is the first medication that has worked on Mom's GERD in years, so hopefully we can get her back on it.
At this point, it is up to Mom if she wants to be tapped again. Paracentesis is a procedure that removes the ascites fluid from her belly, which will lessen the pressure and make her more comfortable, but it is generally avoided if possible. The more you tap. the more often you need to be tapped and this makes doctors uncomfortable. It is not a good cycle to get into and doctors hold off on this until it is absolutely necessary. There is also a risk of infection associated with tapping and Mom has a barely-existent immune system.
Mom started to refill her own medication box two weeks ago. I check it for her to make sure she has the right medications and dosages in the right time slots. She gets a few things confused sometimes, but it makes her feel more in control of her own medicine and medical care and I make sure whatever mistakes are corrected. It seems to be a good system so that she feels more in control but doesn't suffer from mistakes she might make, which relieves the rest of us from worrying about what she's taking. She is also logging everything she takes and she agreed to start logging her pain and sleeping meds as well. This reduces the chance that any medical issues she has in the future would be misdiagnosed as overdoses and indicate inappropriate treatment, and would easily identify an overdose if she did.
Her birthday is next week, if anyone is interested in calling and wishing her well. She always says she hates her birthday and flowers and attention, but in truth, it makes her feel loved. We will be taking her out to a lunch/dinner if she feels up to it. It's always hard to make someone feel good when they always feel so physically bad. She will be 54.
Friday, November 5, 2010
Chest X-Ray and Bloodwork Update
Mom had a doctor's appointment, chest x-ray, and bloodwork on Wednesday. Mom spoke to her doctor's office today and gave some information. I will confirm with the nurse on Monday to make sure, but this is what I'm getting from Mom:
~She has a kidney infection which will be treated with antibiotics. This is due to having a UTI that went untreated.
~Her alk phos level (remember that normal is under 300) is about 1300. This is indicative that her liver may be getting worse. The level fluctuates normally and it has been this high in the past and come back down. The doctor is recommending a visit with the liver specialist. I made an appointment for her with the hepatologist for next week.
~They found evidence of a broken rib that had healed. I'm guessing this is likely when she fell (back around February, if I recall) and refused treatment. She said it felt like she broke a rib, but refused to let me take her to the hospital and when I called out a medic, she told them to leave. At the time, they said her mental capacity was "borderline" and they didn't want to be sued, so they could not force her to get treatment.
~She is no longer dehydrated or malnourished.
I will speak with the nurse next Monday (the doctor's office is closed now) to confirm this information and find out what to do about her ascites fluid. She looks pregnant again and the pressure makes everything more difficult for her, but they have yet to indicate any kind of treatment or plan of action for it. They simply told me to put her on water pills at exactly the dosages she's already taking regularly. Clearly, that's not working as we would like it to, so I need to clarify.
~She has a kidney infection which will be treated with antibiotics. This is due to having a UTI that went untreated.
~Her alk phos level (remember that normal is under 300) is about 1300. This is indicative that her liver may be getting worse. The level fluctuates normally and it has been this high in the past and come back down. The doctor is recommending a visit with the liver specialist. I made an appointment for her with the hepatologist for next week.
~They found evidence of a broken rib that had healed. I'm guessing this is likely when she fell (back around February, if I recall) and refused treatment. She said it felt like she broke a rib, but refused to let me take her to the hospital and when I called out a medic, she told them to leave. At the time, they said her mental capacity was "borderline" and they didn't want to be sued, so they could not force her to get treatment.
~She is no longer dehydrated or malnourished.
I will speak with the nurse next Monday (the doctor's office is closed now) to confirm this information and find out what to do about her ascites fluid. She looks pregnant again and the pressure makes everything more difficult for her, but they have yet to indicate any kind of treatment or plan of action for it. They simply told me to put her on water pills at exactly the dosages she's already taking regularly. Clearly, that's not working as we would like it to, so I need to clarify.
Wednesday, October 20, 2010
October 20th, 2010
Mom had an abdominal CT last week that showed some fluid on her belly and suggested fluid in the lungs. The doctor seems content to keep her on her regular regimen of water pills to clear the fluid, but wants a chest x-ray to see the lungs a little clearer to be sure there's fluid in them. I'm not sure what the procedure would be at that point. One step at a time. I will update when I know more.
Also, a social worker came out and is trying to help get us into some programs that might help with respite care and help reimburse those folks who generously take the time out of their day to cart Mom around to her doctors and tests. It's unclear whether we qualify for help, as always, but we'll try and see what happens.
Also, a social worker came out and is trying to help get us into some programs that might help with respite care and help reimburse those folks who generously take the time out of their day to cart Mom around to her doctors and tests. It's unclear whether we qualify for help, as always, but we'll try and see what happens.
Thursday, September 30, 2010
A little worse...
Mom is a little worse now than before. She is losing it mentally again. She can't tell days from nights, and for whatever reason she simply doesn't read anything. She takes medication in the pill holder for whichever day and whichever time and doesn't check to see what day or time it actually IS before she takes it. I've started pulling out the correct day's meds (this pill box allows me to pull out one day - AM/PM - at a time) and leaving them on her calendar to help, but I doubt it will do much good. Her pain meds are still unmonitored and she won't let me control them. She gets violent and angry when I suggest more help is needed. She skipped a whole day's meds on Tuesday because I have a horrible cold and didn't take out that day for her (I regret that I was largely unconscious), and she never thought about it.
Her weight is steady at about 98 lbs, but slowly losing weight over time. She is eating a lot of english muffins, mashed potatoes and roast beef dips. At least the meat has protein. The doctor told her she could drive again if she gains 30 pounds, so at least she has a goal.
She went shopping with my boyfriend and I last week and it had been so long since she shopped herself that she went on a spending spree trying to figure out what else she can buy. If we can get her out of the house and enjoying herself, I think it would go a long way, but right now I'm sick, and nobody is around to help her. I lost my job (again), so I'm at home until I find another one, but that means I'm either looking for a job or working at one, and that means days are long and lonely for her. I wish there was something more I could do to get her out. I wish there was somewhere for her to go with people who care for her and would spend time with her. It makes her so much happier (and so much more pleasant to deal with) when she isn't cooped up in this house day after day.
Her weight is steady at about 98 lbs, but slowly losing weight over time. She is eating a lot of english muffins, mashed potatoes and roast beef dips. At least the meat has protein. The doctor told her she could drive again if she gains 30 pounds, so at least she has a goal.
She went shopping with my boyfriend and I last week and it had been so long since she shopped herself that she went on a spending spree trying to figure out what else she can buy. If we can get her out of the house and enjoying herself, I think it would go a long way, but right now I'm sick, and nobody is around to help her. I lost my job (again), so I'm at home until I find another one, but that means I'm either looking for a job or working at one, and that means days are long and lonely for her. I wish there was something more I could do to get her out. I wish there was somewhere for her to go with people who care for her and would spend time with her. It makes her so much happier (and so much more pleasant to deal with) when she isn't cooped up in this house day after day.
Sunday, September 12, 2010
New Contact Number
FYI: I have a new phone number with unlimited voicemail and I can check it while at work (it emails them to me with transcripts). If you want it, ask and you shall receive. It forwards to my cell phone right now, so don't think of it as just a voicemail service. I'll answer if I can.....but my cell only has so much space for voicemail and it's constantly full and I miss important things, so this is better.
Trying random protein bars for Mom....this time I chose one from Trader Joe's. She won't eat the Special K Meal Bars because she's "not into sweets right now" and they're covered in chocolate. Ensure is out because she says it messes with her sugar levels. Same with Boost. She doesn't want to try Glucerna. We'll keep trying to find things.
Trying random protein bars for Mom....this time I chose one from Trader Joe's. She won't eat the Special K Meal Bars because she's "not into sweets right now" and they're covered in chocolate. Ensure is out because she says it messes with her sugar levels. Same with Boost. She doesn't want to try Glucerna. We'll keep trying to find things.
Saturday, September 11, 2010
Herbalife 110
Mom is stable, but steadily losing weight. She is down to 110 lbs now - about 50 lbs less than she needs to be to keep her strong enough to survive. Her new craving is english muffins and mashed potatoes, both drenched in butter. You'd think the heavy starches and fats would put on weight, but not so far.
She is afraid. She does not want to die. As Western medicine is out of ideas, she is turning to homeopathic and "alternative" medicines. She tried something called Herbalife, which was supposed to be a vitamin-filled powder to help boost the nutrients in her system that she does not absorb from food. I didn't think this would work - I don't believe in things not tested, but beyond that, it didn't make sense to me that she should be able to absorb something from a shake if we know she doesn't absorb the same somethings from regular food. She tried it twice and took it to her liver specialist. Apparently, her liver phosphates are extremely high (above 1000), and this indicates that her liver disease is advancing. Also, the specialist urged her to stop the use of Herbalife and "educated her on the harmful effects" of it (quoted from the report they wanted her to bring to me). They said it has been shown to cause liver failure overseas and that the US has been urging people not to use it, but they can't do much more than that because it's sold as a suppliment and is not under the control of or tested by the FDA.
I ask her to drink almond milk, eat hard-boiled eggs, eat avocados....anything the nutritionist recommended to help her put on weight and get some good proteins and fats into her. She refuses and tells me she's doing everything she can. She is on less medication now than prior to being in hospice's care, but I think that's because her current doctor has neglected her hormone replacement and I do not know the effects of that. I've asked about this, but get no response, and quite honestly, it's harder to fight when you see the end of the battle nearing.
I took a pair of pictures of her a week or so ago. It seems to yank people into reality. For those who haven't seen her recently (even those of us who have...), it might be a rude awakening. If you would like to see them, post a comment with your email address. I will not approve the comment and your email address not be posted, but I will have it to send the pics. I don't want to post them here for anyone to see.
She is afraid. She does not want to die. As Western medicine is out of ideas, she is turning to homeopathic and "alternative" medicines. She tried something called Herbalife, which was supposed to be a vitamin-filled powder to help boost the nutrients in her system that she does not absorb from food. I didn't think this would work - I don't believe in things not tested, but beyond that, it didn't make sense to me that she should be able to absorb something from a shake if we know she doesn't absorb the same somethings from regular food. She tried it twice and took it to her liver specialist. Apparently, her liver phosphates are extremely high (above 1000), and this indicates that her liver disease is advancing. Also, the specialist urged her to stop the use of Herbalife and "educated her on the harmful effects" of it (quoted from the report they wanted her to bring to me). They said it has been shown to cause liver failure overseas and that the US has been urging people not to use it, but they can't do much more than that because it's sold as a suppliment and is not under the control of or tested by the FDA.
I ask her to drink almond milk, eat hard-boiled eggs, eat avocados....anything the nutritionist recommended to help her put on weight and get some good proteins and fats into her. She refuses and tells me she's doing everything she can. She is on less medication now than prior to being in hospice's care, but I think that's because her current doctor has neglected her hormone replacement and I do not know the effects of that. I've asked about this, but get no response, and quite honestly, it's harder to fight when you see the end of the battle nearing.
I took a pair of pictures of her a week or so ago. It seems to yank people into reality. For those who haven't seen her recently (even those of us who have...), it might be a rude awakening. If you would like to see them, post a comment with your email address. I will not approve the comment and your email address not be posted, but I will have it to send the pics. I don't want to post them here for anyone to see.
Saturday, August 7, 2010
August 2010
Nothing to report. Mom saw her GI specialist, but doesn't know what he said. My guess is that he said the same thing he said last time - get an endoscopy and colonoscopy with biopsies and come back. She was tapped (the ascites fluid in abdomen caused by liver disease was drawn out with a long needle), and lost about 5 lbs doing so. She looks and feels much better without the pressure.
Mom is eating a lot and says she's hungry and wants me to cook, but never knows what sounds good and we accumulate so many uneaten meals in the fridge that we fill it up and I can't cook. This is a cycle we go through. It'll end when I clear out the fridge and throw away her leftovers and start over again. It's good that she's eating and trying to eat. So far, I still can't get her to eat anything vaguely healthy, but at least a bit of chicken has some protein. I wish she'd be a bit more active and get some physical therapy in, but at least she doesn't sleep the whole day. Things are generally stable.
Mom is eating a lot and says she's hungry and wants me to cook, but never knows what sounds good and we accumulate so many uneaten meals in the fridge that we fill it up and I can't cook. This is a cycle we go through. It'll end when I clear out the fridge and throw away her leftovers and start over again. It's good that she's eating and trying to eat. So far, I still can't get her to eat anything vaguely healthy, but at least a bit of chicken has some protein. I wish she'd be a bit more active and get some physical therapy in, but at least she doesn't sleep the whole day. Things are generally stable.
Thursday, July 22, 2010
Update - Stable
Nothing to report, really, but it's been a while. Mom is doing well. She is trying to force herself to eat when she is not hungry and not feeling well. This is a daily struggle and some days fair better than others on this front. We are slowly (too slowly) correcting her medication and getting her onto the meds that Hospice threw away. I really wish they didn't do that. We can't afford to replace all of her medication right now, so we will get what we can when we can and she should be back to normal in a few months. She is awake for more hours during the day, which is an improvement on her old habits. I wish I had somewhere to take her (and the time to do it); I know it would improve her morale to have company. She feels much better now that we've had carpet installed. It's not the best carpet, and she paid way too much, and I tried to warn her. But it's done now and she really thought she did well at the time, so I'm trying not to make her feel bad about her purchase. The house is a disaster from moving everything everywhere else to install the carpeting, but I'm taking it as a good thing - it forces me to re-organize and put everything where it belongs.
No doctors appointments, no specialists, nothing to report. She did have physical therapy for her inner ear issue (that caused her to lose balance very often) and it seems that it helped a great deal, but did not entirely solve the problem. We may need to send her back to PT once more to finish the job.
Generally, she is coherent and awake most of the day. She is trying very hard to keep track of her medications. I bought her a calendar and alarm clock from Amazon, but they sent the wrong stuff (a calendar from 2009 and the dual-alarm clock only lets you set one alarm). She occasionally gets her days confused, but she usually asks before taking any medication. She is still trying.
No doctors appointments, no specialists, nothing to report. She did have physical therapy for her inner ear issue (that caused her to lose balance very often) and it seems that it helped a great deal, but did not entirely solve the problem. We may need to send her back to PT once more to finish the job.
Generally, she is coherent and awake most of the day. She is trying very hard to keep track of her medications. I bought her a calendar and alarm clock from Amazon, but they sent the wrong stuff (a calendar from 2009 and the dual-alarm clock only lets you set one alarm). She occasionally gets her days confused, but she usually asks before taking any medication. She is still trying.
Monday, July 5, 2010
RIP Fred
Mom has been well since coming home from respite care. She has been careful about her medications and logging everything she does since her last accidental overdose last Wednesday. She is terrified that APS will come and force her onto MediCAL and take her house and put her in a home, so she is motivated to keep up on it. She has a doctor's appointment Wednesday to fill those medications that hospice threw away (which chaps my hide because they are only allowed to discard medications they prescribed and one of those meds was cash-only from a special pharmacy and will cost ~$75/month and they tossed a 2-month supply....thanks) and figure out a game plan on how to tackler her various medical problems.
Today will be hard on Mom. While in respite, she made the decision (FINALLY) to put down the sick dog, Fred. Fred is a female, about 10 years old. Her sister is healthy, but Fred had spinal surgery when she was five years old and has had numerous medical issues since. She is in pain daily, on four medications, and is incontinent. She is a walking health hazard for Mom (and anyone else) and causes so many problems in the house - physically, financially - combined with the fact that the dog is in pain daily....it's way past time to put this dog down. Mom is extremely attached to this dog and today will be a very difficult day for her. I think she finally realized that it's necessary for her health, for her to live a good life, to change what's not working in her life. This is a good thing. I will be with Mom and we will put Fred down together. She will be cremated and put in a little box with a paw print (I know, it's overkill, but it makes Mom feel better about it, so we're doing it).
I want to mention to those who are thinking that this is just some stupid dog and get the hell over it and something hostile and annoying toward Mom or myself: shut the hell up. It's not your dog. It's not your life. And you don't know what that woman has been through or what that dog has seen her through. As annoying as I find the dog, I understand how much this means to her and how her heart is breaking right now. So if you can't find words that aren't asinine, keep them to yourself. She needs support and love right now. Provide it or don't, but don't make it worse by discounting her feelings.
Today will be hard on Mom. While in respite, she made the decision (FINALLY) to put down the sick dog, Fred. Fred is a female, about 10 years old. Her sister is healthy, but Fred had spinal surgery when she was five years old and has had numerous medical issues since. She is in pain daily, on four medications, and is incontinent. She is a walking health hazard for Mom (and anyone else) and causes so many problems in the house - physically, financially - combined with the fact that the dog is in pain daily....it's way past time to put this dog down. Mom is extremely attached to this dog and today will be a very difficult day for her. I think she finally realized that it's necessary for her health, for her to live a good life, to change what's not working in her life. This is a good thing. I will be with Mom and we will put Fred down together. She will be cremated and put in a little box with a paw print (I know, it's overkill, but it makes Mom feel better about it, so we're doing it).
I want to mention to those who are thinking that this is just some stupid dog and get the hell over it and something hostile and annoying toward Mom or myself: shut the hell up. It's not your dog. It's not your life. And you don't know what that woman has been through or what that dog has seen her through. As annoying as I find the dog, I understand how much this means to her and how her heart is breaking right now. So if you can't find words that aren't asinine, keep them to yourself. She needs support and love right now. Provide it or don't, but don't make it worse by discounting her feelings.
Thursday, July 1, 2010
Changes come fast.....
Still not a clear understanding of the goings on at my house when I am not there, but here's what I've gleaned and seems to be a consensus amongst various people involved:
~ Mom has been booted from Hospice. She no longer qualifies, perhaps because she wants to fight and perhaps because she is not expected to die within six months.
~ Whomever came to the house and claimed to be animal control was not and scared Mom for some unknown purpose. Still waiting on a call back from the officer on duty in the area during this supposed visit, but animal control maintains that they do, in fact, leave information and case numbers, and that they do not, in fact, require you to put your dog down under these circumstances and that they did not send anyone to the house yesterday. Way to scare a sick woman. I hope whoever did it is proud of themselves for what they've accomplished.
~ No caregiver at this time as we cannot afford it and my brother has changed his mind about paying for someone to watch her. Thus, we will attempt to do this between the two of us, but honestly, I see that becoming the one of me once again very soon.
What I understand that Mom does not:
~ Mom believes that a social worker from APS (from her OD two weeks ago) will return and take her to a place she does not wish to be (i.e. a hospital/convalescent home/etc) if the house is not spic and span in a few weeks. A social worker did come out after her OD, and she will likely follow-up, but she had stated that the claim from the tipline was invalid and that she was trying to help Mom. She was supposed to send info on those lifeline gadgets, such that when Mom falls, she presses a button for help. Have not seen that info yet, but these things take time. I don't think this woman would send Mom anywhere without a very good reason and there is none if she has her mental faculties.
~ Mom was told that I cancelled her MediCAL insurance and that it was the cause of her being discontinued services from Hospice. This is far from true. She has never had MediCAL and I have not had a chance to complete the application. I was waiting for the social worker, who said she would help me with the packet, and then failed to do so and told me to apply by myself over the phone.
~ Mom is convinced that her primary care doctor does not wish to be her doctor anymore. What actually happened is that she tried to make an appointment to see him to get refills on her medications that Hospice took away (which they should have returned, so I have to look into this if they threw away money) and he was overbooked, so they made an appointment with another doctor that she sees often in lieu of her PCP.
I honestly don't understand the hostility I tend to receive with this situation. I have done everything I can to take care of her and to get her to want to be better. Unfortunately, there are negative influences in the world who really ought to learn to stay out of a mess instead of making it worse. We're already stretched; please don't pull harder. If people want to help, I am not above it. I cannot do this on my own. People who want nothing but to complain about the way things are done or what's being done about/to/with Mom only cause conflict and negative feelings and should keep their mean-spirited ideas in their own heads. Thank you.
~ Mom has been booted from Hospice. She no longer qualifies, perhaps because she wants to fight and perhaps because she is not expected to die within six months.
~ Whomever came to the house and claimed to be animal control was not and scared Mom for some unknown purpose. Still waiting on a call back from the officer on duty in the area during this supposed visit, but animal control maintains that they do, in fact, leave information and case numbers, and that they do not, in fact, require you to put your dog down under these circumstances and that they did not send anyone to the house yesterday. Way to scare a sick woman. I hope whoever did it is proud of themselves for what they've accomplished.
~ No caregiver at this time as we cannot afford it and my brother has changed his mind about paying for someone to watch her. Thus, we will attempt to do this between the two of us, but honestly, I see that becoming the one of me once again very soon.
What I understand that Mom does not:
~ Mom believes that a social worker from APS (from her OD two weeks ago) will return and take her to a place she does not wish to be (i.e. a hospital/convalescent home/etc) if the house is not spic and span in a few weeks. A social worker did come out after her OD, and she will likely follow-up, but she had stated that the claim from the tipline was invalid and that she was trying to help Mom. She was supposed to send info on those lifeline gadgets, such that when Mom falls, she presses a button for help. Have not seen that info yet, but these things take time. I don't think this woman would send Mom anywhere without a very good reason and there is none if she has her mental faculties.
~ Mom was told that I cancelled her MediCAL insurance and that it was the cause of her being discontinued services from Hospice. This is far from true. She has never had MediCAL and I have not had a chance to complete the application. I was waiting for the social worker, who said she would help me with the packet, and then failed to do so and told me to apply by myself over the phone.
~ Mom is convinced that her primary care doctor does not wish to be her doctor anymore. What actually happened is that she tried to make an appointment to see him to get refills on her medications that Hospice took away (which they should have returned, so I have to look into this if they threw away money) and he was overbooked, so they made an appointment with another doctor that she sees often in lieu of her PCP.
I honestly don't understand the hostility I tend to receive with this situation. I have done everything I can to take care of her and to get her to want to be better. Unfortunately, there are negative influences in the world who really ought to learn to stay out of a mess instead of making it worse. We're already stretched; please don't pull harder. If people want to help, I am not above it. I cannot do this on my own. People who want nothing but to complain about the way things are done or what's being done about/to/with Mom only cause conflict and negative feelings and should keep their mean-spirited ideas in their own heads. Thank you.
Just Another Wednesday Night
Since Mom's return from respite, a lot of things have changed. Mom is in the hospital bed in the dining room and avoiding entering her bedroom and getting furred up by dogs. She was left to monitor and administer her own medication. She was lucid enough, and the social worker (who I am so not pleased with, it's actually ridiculous) and case manager (who has not been managing her case until this point) dediced she could do this on her own. There was resistance from myself and the nurses who have been caring for her and actually know what they're dealing with, but the case manager is the one in charge and Mom was adamant about wanting to take control of her life and her healthcare. She was having problems remembering how much of which medications to take when, so I helped her pick out her medications the last few mornings. Yesterday, a nurse came out and divided her regular meds vs. her "as needed" medications and put her regular medications in the am/pm pill box. The time was also changed from 6 am/pm to 8 am/pm.
Last night, Mom took both Wednesday PM at 8 PM and Thursday PM pills at 11 PM last night. She freaked herself out and the nurse recommended a night in the ER for observation. They monitored her until after 5 AM as specified by poison control and released her. The meds she took were not the ones that mess with her head and cause her to be loopy (i.e. pain/anxiety meds), but regular medications (i.e. for bladder disease or thyroid) and she didn't notice any real difference. Actually, the worst it did was raise her blood pressure to the level that's normal for most people. This isn't good, because liver disease can cause some blood vessels to rupture and we try to keep her BP low, but it wasn't high enough to cause that sort of damage. Basically, it was an uncomfortable hotel stay. She is home now and I checked her morning medication to make sure she is taking what she is supposed to take, though since I'm told to keep her boxes unlocked, there is no way to prevent this from happening when I'm at work. Mom caught the OD herself and made us aware, and she behaved very well even though she was scared out of her mind. She thought she accidentally killed herself. At least I got an "I love you" out of it. We'll be getting a calendar and clock to try to keep her on track and will be watching very closely until we figure she can do this on her own for real.
A schedule has not been worked out as of yet. We had planned on meeting Tuesday night, but my brother was called out for work and now he works nights (yes, nights, for at least the foreseeable future) so we probably won't have a chance to really hammer it out until next week. Also, someone reported our dogs and animal control came out to the house and sufficiently scared the crap out of Mom. She is stating that we have to put our dogs to sleep and give one to her mother, neither of which is going to happen if I can avoid it. Those dogs, as furry as they are, are family. The sick one (we all know which one) does need to be put down, and Mom just recently came to terms with the idea. What's ironic is that this situation was going to be resolved within a month's time, and someone threw a wrench into the works. Now I have a completely different problem to deal with, and whoever came to the house left no paperwork or instructions for me to follow so I don't know what I'm supposed to do within 30 days. We'll see what happens there, but I may need to find homes for two dogs. This is a devastating blow to us and it comes at a time most unfortunate.
There is a family meeting scheduled for today (who scheduled it, we're not sure...poor communication and insinuations are flying around...I'm distrustful of some of the nursing staff). I may or may not attend via telephone, as it is unclear as to why nobody in the family was informed of the family meeting, but the brother will be there and I will update anything important if I can later.
Last night, Mom took both Wednesday PM at 8 PM and Thursday PM pills at 11 PM last night. She freaked herself out and the nurse recommended a night in the ER for observation. They monitored her until after 5 AM as specified by poison control and released her. The meds she took were not the ones that mess with her head and cause her to be loopy (i.e. pain/anxiety meds), but regular medications (i.e. for bladder disease or thyroid) and she didn't notice any real difference. Actually, the worst it did was raise her blood pressure to the level that's normal for most people. This isn't good, because liver disease can cause some blood vessels to rupture and we try to keep her BP low, but it wasn't high enough to cause that sort of damage. Basically, it was an uncomfortable hotel stay. She is home now and I checked her morning medication to make sure she is taking what she is supposed to take, though since I'm told to keep her boxes unlocked, there is no way to prevent this from happening when I'm at work. Mom caught the OD herself and made us aware, and she behaved very well even though she was scared out of her mind. She thought she accidentally killed herself. At least I got an "I love you" out of it. We'll be getting a calendar and clock to try to keep her on track and will be watching very closely until we figure she can do this on her own for real.
A schedule has not been worked out as of yet. We had planned on meeting Tuesday night, but my brother was called out for work and now he works nights (yes, nights, for at least the foreseeable future) so we probably won't have a chance to really hammer it out until next week. Also, someone reported our dogs and animal control came out to the house and sufficiently scared the crap out of Mom. She is stating that we have to put our dogs to sleep and give one to her mother, neither of which is going to happen if I can avoid it. Those dogs, as furry as they are, are family. The sick one (we all know which one) does need to be put down, and Mom just recently came to terms with the idea. What's ironic is that this situation was going to be resolved within a month's time, and someone threw a wrench into the works. Now I have a completely different problem to deal with, and whoever came to the house left no paperwork or instructions for me to follow so I don't know what I'm supposed to do within 30 days. We'll see what happens there, but I may need to find homes for two dogs. This is a devastating blow to us and it comes at a time most unfortunate.
There is a family meeting scheduled for today (who scheduled it, we're not sure...poor communication and insinuations are flying around...I'm distrustful of some of the nursing staff). I may or may not attend via telephone, as it is unclear as to why nobody in the family was informed of the family meeting, but the brother will be there and I will update anything important if I can later.
Tuesday, June 29, 2010
Will Update Soon....
No, I'm not ignoring the site. A LOT has happened, and I only know half of it....
The half of it: Mom spent five days and four nights in a respite care facility. They limited her meds a great deal (exactly the opposite of what we were expecting, and they seemed to have issues following Hospice's directions with this, as Hospice leans toward more medicine). She hated it there, which turns out to be a good thing. It spurred her on. She wants to get better now. She said she wants to see Kendall graduate college. Kendall is two years old now. Her voice is gone, but her legs are healing (they were cracking and bleeding from all the walking). Mom came home yesterday morning and is currently settled in a clean hospital bed in the dining room, away from the dogs.
What I don't know/understand fully: Brother spent a lot of time with this yesterday. Social worker (who did absolutely NOTHING to help me with the mediCAL paperwork...she hasn't actually worked with me on anything and I have no evidence she works at all) decided that Mom is clear-headed enough to administer her own medication, so the lock boxes are left unlocked. I am to count the pills daily to make sure how many she has taken, but since her medication list changed and makes little sense to me, I'm not sure what good that does. A lot of decisions were made that affect me and I was not involved in the discussions or decision-making, so I'm very frustrated with that at the moment. I don't know what else is going on. I will update when people start telling me what's happening. It'd be be awfully nice to know.
The half of it: Mom spent five days and four nights in a respite care facility. They limited her meds a great deal (exactly the opposite of what we were expecting, and they seemed to have issues following Hospice's directions with this, as Hospice leans toward more medicine). She hated it there, which turns out to be a good thing. It spurred her on. She wants to get better now. She said she wants to see Kendall graduate college. Kendall is two years old now. Her voice is gone, but her legs are healing (they were cracking and bleeding from all the walking). Mom came home yesterday morning and is currently settled in a clean hospital bed in the dining room, away from the dogs.
What I don't know/understand fully: Brother spent a lot of time with this yesterday. Social worker (who did absolutely NOTHING to help me with the mediCAL paperwork...she hasn't actually worked with me on anything and I have no evidence she works at all) decided that Mom is clear-headed enough to administer her own medication, so the lock boxes are left unlocked. I am to count the pills daily to make sure how many she has taken, but since her medication list changed and makes little sense to me, I'm not sure what good that does. A lot of decisions were made that affect me and I was not involved in the discussions or decision-making, so I'm very frustrated with that at the moment. I don't know what else is going on. I will update when people start telling me what's happening. It'd be be awfully nice to know.
Tuesday, June 22, 2010
Long Weekend
Sorry for the delay in the update; between computer funk and the busiest weekend in a long long time, I haven't been able to post. I'd like to thank Kim and her kind husband for the flowers they sent. They are beautiful and Mom enjoys them. She forgot about them, so it was a happy surprise twice!
Generally, Mom is stable. Her vitals are weak, but they are there. Her pain is still out of control (this was likely caused by the lack of medication while we waited for her to metabolize last week's overdose). She is more active at night than ever. Her pain medication is being increased and she will be given a sleeping pill before bed to try to keep her down all night. Her feet and ankles are swollen from too much walking (most of which is at night), and she needs to relax a bit more. We also worry about her falling, as she does that fairly often. She tells me she walked up and down the block a few days ago, and I'm not quite sure if she did. She believes she drank Pinesol - I don't know on this one either. A bottle was on the counter, but not much of it was gone. She complains of a sore and burning throat, but she has GERD (acid reflux), so it's hard to tell. She has confused medications and drinks before, and even poured a liquid medication into the bottle of one of her pain medications and dissolved about 200 tablets on the night of her overdose. Anything is possible. Had the plumber out today to unclog her toilet for the second time in a month. The first time, the plumber found pieces of a pill bottle that was likely accidentally flushed. This time, she appears to have trouble remembering to flush.
I have been informed that there will be a hospital bed delivered today, so hopefully that is set up before I get home from work today. The new medications should arrive tonight, and I will start her on them at the next appropriate dose. Hospice says they have a bed ready, and I know they are trying to wait until Monday to put her into respite care. Respite care is essentially a skilled nursing facility, but would be managed by Hospice. They would make sure Mom is given her meds like she should, and make sure she is not neglected. Respite care would be able to administer more medication than I am allowed to at home (they would be able to monitor her and give her oxygen, etc, if needed, whereas I cannot and am not a nurse), so they would be able to get her pain under control. Also, it would give me a week of uninterrupted sleep (or as peaceful as an insomniac can naturally rest). Mom is awake, on average, every 90 minutes throughout the night. This means that I get, on average, 2.5 hours of sleep in small catnaps. I have the MediCAL application and a social worker will help me with the process on Friday. If we can get her into a place that will give her 'round-the-clock care, we can contain the situation. Mom does not wish to go to a hospital, but I can't care for her at home by myself. Even if I wasn't working, I don't believe this is a situation I can handle alone. She is dangerous to herself and often the primary caregiver (i.e. me) is the one the patient (i.e. Mom) blames for their illness and expresses all their hostility toward. This is, at least, frustrating, and at most, debilitating to her care; she doesn't cooperate with me. If we can find a way to afford it, we have decided to keep a nurse at the house, but this is very expensive. We may be able to keep a nurse during the day when I am at work, and sedate her at night to keep the sundowner sleeping. This may work best for her, to keep her calm and comfortable and safe in her own home, where she wants to be.
I have just learned, in typing this update, that respite care will not happen because someone canceled the request on my behalf. I sincerely hope there is a plan that I don't know about.
Generally, Mom is stable. Her vitals are weak, but they are there. Her pain is still out of control (this was likely caused by the lack of medication while we waited for her to metabolize last week's overdose). She is more active at night than ever. Her pain medication is being increased and she will be given a sleeping pill before bed to try to keep her down all night. Her feet and ankles are swollen from too much walking (most of which is at night), and she needs to relax a bit more. We also worry about her falling, as she does that fairly often. She tells me she walked up and down the block a few days ago, and I'm not quite sure if she did. She believes she drank Pinesol - I don't know on this one either. A bottle was on the counter, but not much of it was gone. She complains of a sore and burning throat, but she has GERD (acid reflux), so it's hard to tell. She has confused medications and drinks before, and even poured a liquid medication into the bottle of one of her pain medications and dissolved about 200 tablets on the night of her overdose. Anything is possible. Had the plumber out today to unclog her toilet for the second time in a month. The first time, the plumber found pieces of a pill bottle that was likely accidentally flushed. This time, she appears to have trouble remembering to flush.
I have been informed that there will be a hospital bed delivered today, so hopefully that is set up before I get home from work today. The new medications should arrive tonight, and I will start her on them at the next appropriate dose. Hospice says they have a bed ready, and I know they are trying to wait until Monday to put her into respite care. Respite care is essentially a skilled nursing facility, but would be managed by Hospice. They would make sure Mom is given her meds like she should, and make sure she is not neglected. Respite care would be able to administer more medication than I am allowed to at home (they would be able to monitor her and give her oxygen, etc, if needed, whereas I cannot and am not a nurse), so they would be able to get her pain under control. Also, it would give me a week of uninterrupted sleep (or as peaceful as an insomniac can naturally rest). Mom is awake, on average, every 90 minutes throughout the night. This means that I get, on average, 2.5 hours of sleep in small catnaps. I have the MediCAL application and a social worker will help me with the process on Friday. If we can get her into a place that will give her 'round-the-clock care, we can contain the situation. Mom does not wish to go to a hospital, but I can't care for her at home by myself. Even if I wasn't working, I don't believe this is a situation I can handle alone. She is dangerous to herself and often the primary caregiver (i.e. me) is the one the patient (i.e. Mom) blames for their illness and expresses all their hostility toward. This is, at least, frustrating, and at most, debilitating to her care; she doesn't cooperate with me. If we can find a way to afford it, we have decided to keep a nurse at the house, but this is very expensive. We may be able to keep a nurse during the day when I am at work, and sedate her at night to keep the sundowner sleeping. This may work best for her, to keep her calm and comfortable and safe in her own home, where she wants to be.
I have just learned, in typing this update, that respite care will not happen because someone canceled the request on my behalf. I sincerely hope there is a plan that I don't know about.
Thursday, June 17, 2010
Medication Switch Thursday June 17th
The decision was made to change Mom's medication. Her old pain medication wasn't strong enough and she has been more than a little aggitated. The new stuff should keep her comfortable and calm. Still no word on a bed for respite care (we heard about the place she'd be put in, and it's like a small house - very nice place without a hospital-like feel), but we're hoping to hear tomorrow. Nothing else today...so far....
Wednesday, June 16, 2010
Wednesday Update June 16th
We're as sure as we can be that last night's episode was caused by an overdose of pain medication. Mom woke this morning at about 6:30 am and ate one scrambled egg and asked for more medication. I consulted the Hospice nurse, gave her what was prescribed, and kept the rest out of her reach. She was walking, awake and alert, though confused. She was arguementative, which is better than non-responsive. I spoke with two social workers today, and we're getting the paperwork started for MediCAL and they are actively trying to place her in a facility for a 5-day respite. We should hear about that tomorrow morning. The picc line was removed today, which greatly decreases her chances of infection.
Tuesday, June 15, 2010
Memories and Weepers Pages
I have successfully opened two new pages on this website. Look to the right and you'll see three pages listed: Home, Memories, and Weepers.
This is the home page and will continue to consist of updates on Mom's status in general.
The Memories page can be used to share, obviously, memories about Mom. Mom has always had a strong personality, to say the least, and I'm sure everyone has at least one story to share. I'll ask that you keep that page upbeat; this is where the memories we want to KEEP go.
If you are currently freaking out, I suggest you try the Weepers page. This is where your sad memories go; the ones we sort of want to FORGET. We won't, but personally, I don't have a particular desire to remember all the bad stuff. Right now, honestly, I'm trying to stay focused and logical to deal with the situation at hand. I likely will not post, nor read too deeply on the Memories page. Please do not take this to mean I do not care or that I am cold-hearted. Thank you for understanding.
This is the home page and will continue to consist of updates on Mom's status in general.
The Memories page can be used to share, obviously, memories about Mom. Mom has always had a strong personality, to say the least, and I'm sure everyone has at least one story to share. I'll ask that you keep that page upbeat; this is where the memories we want to KEEP go.
If you are currently freaking out, I suggest you try the Weepers page. This is where your sad memories go; the ones we sort of want to FORGET. We won't, but personally, I don't have a particular desire to remember all the bad stuff. Right now, honestly, I'm trying to stay focused and logical to deal with the situation at hand. I likely will not post, nor read too deeply on the Memories page. Please do not take this to mean I do not care or that I am cold-hearted. Thank you for understanding.
Sundowner
Nurse Julie just left the house a few moments ago. Mom was exhibiting strange behavior when I got home tonight. She was disoriented and non-responsive. She fell and luckily landed on her bed, but face-down. Her feet and ankles are extremely swollen (they were not yesterday, but were earlier today). Her vitals are stable, and it is unclear what caused this tonight. At best guess, it appears to be an overdose of pain medication. Nothing to do but wait for her metabolism to clear it from her body. I have taken the meds away from her that she is most likely to take in the middle of the night that cause this kind of fatigue. A nurse will be out in the morning to check on her and administer pain medication if necessary. She has her pain patch on; this will deliver a slow and steady dose and does not run the same risk as the pills do.
We will continue to try to contact a social worker. I have yet to speak to one, though I've been told she has been working on Mom's case since Thursday of last week. It appears she works three days a week, so someone else will have to begin the MediCAL paperwork. We are trying to work something out in the meantime to provide her with at least some nursing care, but our financial situation does not allow much wiggle room.
I ask that people not call Mom tomorrow (Wednesday), as I doubt she will have the cognitive power to answer the phone, much less carry on a conversation. You will merely scare yourself.
I learned tonight that Mom is what is called a "sundowner". Sundowners become more active at night, though nobody knows why. This is apparently why she feels chatty at 10 pm and hungry at 3 am.
We will continue to try to contact a social worker. I have yet to speak to one, though I've been told she has been working on Mom's case since Thursday of last week. It appears she works three days a week, so someone else will have to begin the MediCAL paperwork. We are trying to work something out in the meantime to provide her with at least some nursing care, but our financial situation does not allow much wiggle room.
I ask that people not call Mom tomorrow (Wednesday), as I doubt she will have the cognitive power to answer the phone, much less carry on a conversation. You will merely scare yourself.
I learned tonight that Mom is what is called a "sundowner". Sundowners become more active at night, though nobody knows why. This is apparently why she feels chatty at 10 pm and hungry at 3 am.
Monday, June 14, 2010
Mom FAQ
These are questions I have answered several times over. I am posting these here for your information and my own sanity.
1. What is the terminal diagnosis?
2. What is she really dying from?
3. Does Hospice mean she has 6 months left?
4. Where is she?
5. What is being done now?
6. What are you trying to do?
7. Can she have visitors?
1. What is the terminal diagnosis?
The terminal diagnosis is complications from chronic liver disease. Mom was diagnosed with NASH (non-alcoholic steatohepatitis: for more information, click here) in October 2009 after tapping some fluid from her abdomen. This fluid was confirmed to be ascites. People with NASH rarely die from it; rather from complications related to the lack of a functional liver. Currently, Mom has increased toxin levels, ascites fluid, and the associated personality changes that tend to follow when your brain isn't receiving the nutrition it needs.
2. What is she really dying from?
NASH is treatable, so why is she dying? Mom has had a total of 9 stomach surgeries. Her GI tract no longer functions as normal. A healthy person might eat a sandwich and it will take two or so hours to digest. Mom will eat two bites and it will take eight hours to go through her system. She suffers from severe malnutrition - she is starving to death. The increased toxin levels combined with a lack of real nutrition, and a new medication that caused incredible fatigue, are the cause of her sudden downward spiral in the last two months. Do not mistake this to mean she was healthy two months ago. She has been ill since her sister, Darlene, passed away on March 9th, 2008. She had problems eating, which caused malnutrition. She utilized TPN via a picc line in her arm for 9 months prior to the surgical removal of a small bowel blockage in July, 2009. She barely healed from surgery and went back into the hospital in October with three separate infections (she has little or no immune system at this point). TPN aggravates the NASH, and we discontinued TPN December 19th, 2009 in hopes that she could hold her weight steady by eating. This was unsuccessful, but she does not wish to use TPN again. It has been said, and I agree, that the real reason my mother is dying is because she does not know how to live without her big sister.
3. Does Hospice mean she has 6 months left?
No, it doesn't. This was the way Hospice worked in the past, but no longer. Hospice only requires a terminal diagnosis and that you do not attempt to cure the terminal disease. This means two things: (1) Mom can be on Hospice for 2 months, 6 months, a year, more. However long she has, or she can decide to fight and cancel Hospice care. Canceling Hospice care would likely put her in a hospital and back on TPN, and there isn't much to do from there. (2) The real difference with Hospice care is that they treat the symptoms without treating the disease. This will be explained below. Another benefit is that Hospice is here for me as well. I have been caring for Mom on my own since Aunt Darlene passed, and have reached the extent of what I can do for her. "Safe, comfortable, and clean" is what I want for Mom, and I am no longer able to contain the situation here and provide that for her on my own.
4. Where is she?
For now, Mom is at home. Hospice is providing me with a social worker to help me get her on MediCAL and see if we can't get her into a nursing facility. Hospice has no facilities in this county, but they will go wherever she lives. Thus, if we can afford (through MediCAL) to get her into a home, Hospice nurses will visit daily and oversee her medical care. They will make sure she is not neglected and gets the medications she needs when she needs them (no nightmare nursing home stories). She has fallen three times in the last two weeks. Sometimes she cannot get up unless I help her, and this is a scary thought when I am at work for 8 hours. Yes, I have come home and found her screaming for help on the floor. No, I don't wish to repeat it. If we cannot get her into a home, we will try to set up in-home care. This would be more like companion care, and would likely require IHSS (In-Home Supportive Services), which is unlikely if we can't get her in a home to begin with because IHSS is a MediCAL program. She needs 24 hour care. Whether she gets it is another story.
5. What is being done now?
Mom is on medication for pain and her other conditions unrelated to liver disease. She has started a medication that helps clear toxins from the body to try to negate the confusion and hostility that she is experiencing. Nurses come to check her vitals. Home health aides come to help her bathe and eat.
6. What are you trying to do?
The chaplain is coming to talk with her in the next few days, to help keep her calm. The social worker is working on about 500 issues, including getting her on MediCAL. We are working on getting her physical therapy for BPPV to help her regain some balance and help lessen the frequency of falls. We are re-arranging the house in case she has to stay here. The plan would then be to put a hospital bed in the dining room and make the dining room her space. Her room is cluttered and her dogs walk all over belly and the difficulty in keeping her room and her dogs clean makes it an unsanitary condition. At the moment, she is extremely resistant to sleeping in a hospital bed, but willing to move the dogs away from her swollen belly. Safe, comfortable, and clean.
7. Can she have visitors?
Yes, she can have visitors on a regulated and infrequent basis. Right now, her medications are largely still under her control. This is bad because she often doesn't remember if she has taken them or not. She either skips or double doses herself. She forgets to take the laculose - the medication that will help clear toxins and help her to regain herself. This means that she is very often confused and hostile when she is awake. She is asleep about 85% of the time. She does try to be nice to people she likes at the time, but she is resistant to nurses and especially to me. She visited with Aunt Nola this weekend, rested and then chose to walk away from her mother a few hours later. She is still not herself. I do not say this to discourage visitors, but rather as a heads up to those who wish to visit. Until her meds are consistent, she will be like this. If you have my number, call me. If not, comment and let me know who you are and we will find a way to touch base. Everyone who reads this should already know Mom anyway, so that shouldn't be too hard.
I will add more posts or edit this post as necessary to help keep me from repeating myself.
1. What is the terminal diagnosis?
2. What is she really dying from?
3. Does Hospice mean she has 6 months left?
4. Where is she?
5. What is being done now?
6. What are you trying to do?
7. Can she have visitors?
1. What is the terminal diagnosis?
The terminal diagnosis is complications from chronic liver disease. Mom was diagnosed with NASH (non-alcoholic steatohepatitis: for more information, click here) in October 2009 after tapping some fluid from her abdomen. This fluid was confirmed to be ascites. People with NASH rarely die from it; rather from complications related to the lack of a functional liver. Currently, Mom has increased toxin levels, ascites fluid, and the associated personality changes that tend to follow when your brain isn't receiving the nutrition it needs.
2. What is she really dying from?
NASH is treatable, so why is she dying? Mom has had a total of 9 stomach surgeries. Her GI tract no longer functions as normal. A healthy person might eat a sandwich and it will take two or so hours to digest. Mom will eat two bites and it will take eight hours to go through her system. She suffers from severe malnutrition - she is starving to death. The increased toxin levels combined with a lack of real nutrition, and a new medication that caused incredible fatigue, are the cause of her sudden downward spiral in the last two months. Do not mistake this to mean she was healthy two months ago. She has been ill since her sister, Darlene, passed away on March 9th, 2008. She had problems eating, which caused malnutrition. She utilized TPN via a picc line in her arm for 9 months prior to the surgical removal of a small bowel blockage in July, 2009. She barely healed from surgery and went back into the hospital in October with three separate infections (she has little or no immune system at this point). TPN aggravates the NASH, and we discontinued TPN December 19th, 2009 in hopes that she could hold her weight steady by eating. This was unsuccessful, but she does not wish to use TPN again. It has been said, and I agree, that the real reason my mother is dying is because she does not know how to live without her big sister.
3. Does Hospice mean she has 6 months left?
No, it doesn't. This was the way Hospice worked in the past, but no longer. Hospice only requires a terminal diagnosis and that you do not attempt to cure the terminal disease. This means two things: (1) Mom can be on Hospice for 2 months, 6 months, a year, more. However long she has, or she can decide to fight and cancel Hospice care. Canceling Hospice care would likely put her in a hospital and back on TPN, and there isn't much to do from there. (2) The real difference with Hospice care is that they treat the symptoms without treating the disease. This will be explained below. Another benefit is that Hospice is here for me as well. I have been caring for Mom on my own since Aunt Darlene passed, and have reached the extent of what I can do for her. "Safe, comfortable, and clean" is what I want for Mom, and I am no longer able to contain the situation here and provide that for her on my own.
4. Where is she?
For now, Mom is at home. Hospice is providing me with a social worker to help me get her on MediCAL and see if we can't get her into a nursing facility. Hospice has no facilities in this county, but they will go wherever she lives. Thus, if we can afford (through MediCAL) to get her into a home, Hospice nurses will visit daily and oversee her medical care. They will make sure she is not neglected and gets the medications she needs when she needs them (no nightmare nursing home stories). She has fallen three times in the last two weeks. Sometimes she cannot get up unless I help her, and this is a scary thought when I am at work for 8 hours. Yes, I have come home and found her screaming for help on the floor. No, I don't wish to repeat it. If we cannot get her into a home, we will try to set up in-home care. This would be more like companion care, and would likely require IHSS (In-Home Supportive Services), which is unlikely if we can't get her in a home to begin with because IHSS is a MediCAL program. She needs 24 hour care. Whether she gets it is another story.
5. What is being done now?
Mom is on medication for pain and her other conditions unrelated to liver disease. She has started a medication that helps clear toxins from the body to try to negate the confusion and hostility that she is experiencing. Nurses come to check her vitals. Home health aides come to help her bathe and eat.
6. What are you trying to do?
The chaplain is coming to talk with her in the next few days, to help keep her calm. The social worker is working on about 500 issues, including getting her on MediCAL. We are working on getting her physical therapy for BPPV to help her regain some balance and help lessen the frequency of falls. We are re-arranging the house in case she has to stay here. The plan would then be to put a hospital bed in the dining room and make the dining room her space. Her room is cluttered and her dogs walk all over belly and the difficulty in keeping her room and her dogs clean makes it an unsanitary condition. At the moment, she is extremely resistant to sleeping in a hospital bed, but willing to move the dogs away from her swollen belly. Safe, comfortable, and clean.
7. Can she have visitors?
Yes, she can have visitors on a regulated and infrequent basis. Right now, her medications are largely still under her control. This is bad because she often doesn't remember if she has taken them or not. She either skips or double doses herself. She forgets to take the laculose - the medication that will help clear toxins and help her to regain herself. This means that she is very often confused and hostile when she is awake. She is asleep about 85% of the time. She does try to be nice to people she likes at the time, but she is resistant to nurses and especially to me. She visited with Aunt Nola this weekend, rested and then chose to walk away from her mother a few hours later. She is still not herself. I do not say this to discourage visitors, but rather as a heads up to those who wish to visit. Until her meds are consistent, she will be like this. If you have my number, call me. If not, comment and let me know who you are and we will find a way to touch base. Everyone who reads this should already know Mom anyway, so that shouldn't be too hard.
I will add more posts or edit this post as necessary to help keep me from repeating myself.
Welcome
Welcome to Kathy's page. I am her daughter and will be posting most or all information on this page. Mom signed on with Hospice on Wednesday, June 9th, 2010. My intention here to keep those internet savvy people aware of her situation and keep them as updated as possible as easily as possible. I will post a general FAQ on Mom, as I get asked many of the same questions repeatedly. Comments are allowed, but they will be filtered. Please be respectful.
As of right now, Mom is home. We are making an attempt to give her 24 hour care. Many things are still in process at the moment, so it is unclear whether this means a nursing facility or care in the home. Hospice nurses, home health aides, and various other Hospice-associated personnel are working with us to help take care of her.
As of right now, Mom is home. We are making an attempt to give her 24 hour care. Many things are still in process at the moment, so it is unclear whether this means a nursing facility or care in the home. Hospice nurses, home health aides, and various other Hospice-associated personnel are working with us to help take care of her.
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