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.
Tuesday, June 29, 2010
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.
Subscribe to:
Posts (Atom)