Mom's been trying really hard to stay on the diet her dietician gave her. It's difficult because she doesn't understand or remember very well, so she gets confused between starches and meats, or if it's 2 servings or 2 ounces. I help her with every meal and it takes about twenty minutes to prepare it because she writes everything down and tries very hard to understand it.
She's eating veggies and fruits on a regular basis. She's trying foods she's never heard of (jicama, butternut squash, edamame) and mostly okay with eating it for now. I hope this continues. She is eating a balanced diet and eating more quantity, more quality, and more frequently. She may be able to stave off getting a feeding tube if she continues this way. She does complain that sometimes she can't finish her meal because she is either too full or nauseous. I think it helps that she is eating food not prepared by myself. She seems more willing to eat what she needs to when it is suggested by someone other than her daughter.
We have a caretaker, but not for very long. She only comes for 2 hours twice a week, and spends the whole time cooking enough food to last Mom until the next time she comes. She was able to clean Mom's bathroom once, but I'm trying to get her to come for more hours. Mom says we can't afford her and wants to fire her soon. She says she will every week. It's only been two weeks, and the caregiver is off this week. I don't know how much longer this woman will last with Mom's confusion. I'll hire her back once I have conservatorship if she does fire her.
Mom is still upset and confused about the idea of conservatorship. She agrees she needs help, but she doesn't understand that it includes help with her finances. She asks what I will do if I get conservatorship because she doesn't have enough money to pay for everything I expect her to pay for. She neither understands that she has more money than she thinks she does (it's tight, but not impossible, and there are ways to reduces costs that she ignores or doesn't pursue) nor that my plan includes getting a job myself. I need to be able to help her cover the cost of caregivers. I've worked out a plan so that I know a monthly average of how much it would cost to get her the care she needs, and I know what salary I'd need to be earning to make enough to pay for the caregivers, the lawyers, and gas to the job even without Mom contributing to the cost of her own caregivers. She doesn't understand much of what's going on, and makes calls all day long trying to find lawyers to help her fight the conservatorship. None will help her. She can't help herself. It only proves the point.
She did, however, ask me to help her find a lawyer to fight me and to give her a ride to one. I declined, though that was rather amusing.
Tuesday, March 27, 2012
Tuesday, March 13, 2012
One Quick Note
Mom lost 9 lbs in the last several days. She's now down to 115 lbs. We're adding hemp seeds to her diet. Click here to learn more about hemp nutrition (no, I'm not giving her pot). She really can't eat the amount of food necessary to put weight back on her bones. She needs the feeding tube. I hope we can get her one.
New Direction!
The short version:
1) Seeking conservatorship over Mom's medical and financial affairs.
2) She is scared, confused, very stressed, and has lost another 9 lbs in about as many days.
3) We don't see the liver doctor until late April. We will confer with him in regards to getting her a feeding tube.
4) Mom brought in a caregiver, but after one visit has decided we can't afford it. She will fire the lady this week, after her second visit.
5) Found many websites to order low/no-sodium alternatives or blends of foods she loves (like no salt added ketchup and tomato sauce). Pretty cheap, too.
6) APS came out to the house. Turns out they are neither protective, nor a service (and the social worker was rather childish to boot).
The LOOOOOONG version:
1) I'm getting help with this process, which is complicated and difficult to do by yourself. I want what's best for Mom and this is it. This is the way for a better, more positive future for both of us. More care for her and less stress on myself. I wish I could say it was my idea, but I thought it wasn't possible because of how her mind comes and goes. It was suggested by someone who loves her enough to say "I'd rather have her hate me and be alive than watch her die because I'm afraid to make her angry." Mom needs serious help paying the bills and making sound financial and medical decisions. She doesn't utilize the help available to her because she doesn't understand what's offered. For instance, she refuses to get on MediCal. Sometimes she remembers someone telling her that her share of cost each month would be more than her house payment and she would have to sell the house first. Sometimes she thinks that they will force her to sell the house and shove her in a home. Her fear of MediCal cuts off a LOT of support for both of us. We simply can't keep going this way. It doesn't work. So instead of giving up (as my last post stated), I've simply quit living the way I did before - where I merely enabled her illness with zero control to manage it reasonably and realistically meet her needs and mine. I'm very relieved and damn near excited about this. I've already made serious changes to the house - no more hoarding! I'm allowing Mom to go through her stuff before I get rid of it. I won't clear out everything she loves, but I'm not allowing her to keep hanging on to work clothes and work shoes (can you see her strutting in high heels anymore?) and cram the dining room full of stuff she never uses or needs. Progress!
2) She can't seem to finish sentences at all. She starts, stutters, and starts another sentence regarding a completely different topic, and stutters again, repeat...Her memory is very poor and she's overwhelmed by the idea of a conservatorship and everything going on. The washer broke, her toilet runs like a hose (our bill is now $100, up from $30), she attempted to read the Medicare options book and couldn't calm down enough to read...This morning she panicked because she said she's starving and needed food right away and said she's dying in two weeks. She saw a psychiatrist last night, and he told her to stop taking her sleeping pills and anxiety meds, so she didn't sleep last night and is freaking out all over the place. Keeping her calm is a struggle.
3) She suddenly freaked out March 2nd and realized she's "starving to death RIGHT NOW" and had to go to the ER. She normally says no when I ask her to go in, so even though it was a silly sort of visit, I took her in. She wouldn't call 911 because she's was too scared to go in without me. They said she was a little dehydrated but they couldn't do any more for her there; it's a chronic problem, but not for the ER. They took a head CT to rule out head trauma (she was confused and stuttering...showing her signs of HE) and it was negative for trauma. She misunderstood and thought that meant she was competent. We now have a standing order at the lab for her ammonia levels. We plan to take her in every Friday. The doc wants to adjust her lactulose and water pills according to her ammonia level and if she becomes dehydrated. It's a lovely plan, but I still can't get her doctor to look at the test results from last Friday to tell me how to adjust the meds. Weekly blood tests don't do anyone any good if nobody looks at them.
4) The caregiver came out on one of Mom's "good" days - where her stories almost make sense unless you try to verify facts and realize it didn't happen the way she thought it did, or when she thought it did, or who said what and why. She initially believed Mom's delusions. It was rather vindicating when she showed up yesterday to cook Mom food and had the most difficult time explaining to Mom what she was doing, repeating herself because Mom would ask the same questions or raise the same issues every five seconds and forget again, and trying to follow Mom's speech as she never finishes sentences. The first half comes out stuttering and the second half is a new beginning to a new sentence regarding a different topic. Mom was very anxious and incomprehensible. She now sees what everyone else does, and is much much nicer to me. I'm sure she's questioning those delusions now! Unfortunately, Mom thinks she can't afford the caregiver, so when she comes Thursday, she plans to fire her. We could afford her if we streamlined the bills and actually budget the money. We could even afford more if I can get out and get a job. Affording a caregiver and managing Mom's bills reasonably is the entire reason I need conservatorship. She still thinks she doesn't need care and can do everything on her own. It's very clear that she can't anymore.
5) Mom's REALLY trying to stay on her diet! Woohoo! She's trying so hard to gain weight and keep under 1000mg salt/day. Her friend brought her pickles the day she called the cops, but she hasn't opened them. She still thinks she needs to watch calories and spoke with a nutritionist today, which confused her greatly. The nutritionist clearly didn't pay attention to the sodium limit (I'm thinking Mom didn't tell her about it), because she came back with a diabetic diet that included pickles and boullion as "free foods". Mom said she had to buy a lot of dry cereal, but much of that is too high in salt. Even Cheerios is 190mg per 3/4 cup...add milk to that at 125mg per 1/2 cup and you have breakfast at 305mg...a third of her daily intake. And she has 8 meals listed each day. This would bring her way over her limit. I'm sure there was a miscommunication somewhere, but since I'm not conservator, the HIPAA laws restrict the nutritionist to talk to me. Are you catching a theme yet?
6) APS was totally useless. The worker came out the same day as the caregiver - on Mom's "good" day. I was terrified to call APS, because I thought for sure they'd shove her in a home, and the depression she'd have over missing her bed and her dogs would be devastating. She'd give up and let herself die in a home. But this worker wasn't working in Mom's best interest. I was really hoping she would help, but she believed Mom's delusions and didn't want to talk to me. She also refused to see evidence I have of Mom's incompetency. I couldn't believe it! How do you "investigate" anything if you refuse to look at EVIDENCE? I asked her to speak with Mom's sister and friends, who've also witnessed her comprehension and memory problems, but she didn't seem interested in calling anyone. I guess I have nothing to fear from her - she's useless and incapable of helping anyone. She stated that APS was a "reference and referral service ONLY" and had no ability to act. She was rude and arrogant. She decided that Mom was "fine" and didn't need conservatorship. Where was that "investigating" again? She said she's seen hundreds of these cases and Mom is very clear headed. I told her she's wrong and maybe she should talk to her doctor. I told her that everyone else (doctors, family, friends, strangers even!) see this, but somehow she doesn't. She wouldn't open her eyes and was merely indignant about Mom's right being taken away. I understand being protective and Mom being angry, but the worker is supposed to recognize behavior and symptoms and listen to all points of view before deciding anything, and this woman made up her mind in 20 minutes in Mom's bedroom with no factual evidence and only Mom's statement to go on. Very disappointing. I wish we had the same worker that came out the last time. She was respectful and kind and actually wanted to help Mom. The new worker doesn't understand her job description. It doesn't include being a jerk to the caregiver! *I* know I've done right by my Mom and that her delusions are just that - part of her illness. I no longer feel the need to constantly defend myself, even from Mom. It's a lot calmer in the house these days. I simply don't engage in fighting with her and when she accuses me of something I didn't do, I don't fight it. I don't defend myself. I just say "ok" and move on. Sometimes I do explain or tell her I disagree, but I tell her it's okay if we disagree. I've been hugging her more, especially when she's scared and freaking out. I have to be careful, because her body hurts and sometimes touching like hugging is painful. No bear hugs! She's admitting more and more when she can't handle things or when she's too confused or overwhelmed to accomplish a task. Imagine how much less stress she would be under if she wasn't the one making those complicated decisions and her care needs were met without her having to think about it!
1) Seeking conservatorship over Mom's medical and financial affairs.
2) She is scared, confused, very stressed, and has lost another 9 lbs in about as many days.
3) We don't see the liver doctor until late April. We will confer with him in regards to getting her a feeding tube.
4) Mom brought in a caregiver, but after one visit has decided we can't afford it. She will fire the lady this week, after her second visit.
5) Found many websites to order low/no-sodium alternatives or blends of foods she loves (like no salt added ketchup and tomato sauce). Pretty cheap, too.
6) APS came out to the house. Turns out they are neither protective, nor a service (and the social worker was rather childish to boot).
The LOOOOOONG version:
1) I'm getting help with this process, which is complicated and difficult to do by yourself. I want what's best for Mom and this is it. This is the way for a better, more positive future for both of us. More care for her and less stress on myself. I wish I could say it was my idea, but I thought it wasn't possible because of how her mind comes and goes. It was suggested by someone who loves her enough to say "I'd rather have her hate me and be alive than watch her die because I'm afraid to make her angry." Mom needs serious help paying the bills and making sound financial and medical decisions. She doesn't utilize the help available to her because she doesn't understand what's offered. For instance, she refuses to get on MediCal. Sometimes she remembers someone telling her that her share of cost each month would be more than her house payment and she would have to sell the house first. Sometimes she thinks that they will force her to sell the house and shove her in a home. Her fear of MediCal cuts off a LOT of support for both of us. We simply can't keep going this way. It doesn't work. So instead of giving up (as my last post stated), I've simply quit living the way I did before - where I merely enabled her illness with zero control to manage it reasonably and realistically meet her needs and mine. I'm very relieved and damn near excited about this. I've already made serious changes to the house - no more hoarding! I'm allowing Mom to go through her stuff before I get rid of it. I won't clear out everything she loves, but I'm not allowing her to keep hanging on to work clothes and work shoes (can you see her strutting in high heels anymore?) and cram the dining room full of stuff she never uses or needs. Progress!
2) She can't seem to finish sentences at all. She starts, stutters, and starts another sentence regarding a completely different topic, and stutters again, repeat...Her memory is very poor and she's overwhelmed by the idea of a conservatorship and everything going on. The washer broke, her toilet runs like a hose (our bill is now $100, up from $30), she attempted to read the Medicare options book and couldn't calm down enough to read...This morning she panicked because she said she's starving and needed food right away and said she's dying in two weeks. She saw a psychiatrist last night, and he told her to stop taking her sleeping pills and anxiety meds, so she didn't sleep last night and is freaking out all over the place. Keeping her calm is a struggle.
3) She suddenly freaked out March 2nd and realized she's "starving to death RIGHT NOW" and had to go to the ER. She normally says no when I ask her to go in, so even though it was a silly sort of visit, I took her in. She wouldn't call 911 because she's was too scared to go in without me. They said she was a little dehydrated but they couldn't do any more for her there; it's a chronic problem, but not for the ER. They took a head CT to rule out head trauma (she was confused and stuttering...showing her signs of HE) and it was negative for trauma. She misunderstood and thought that meant she was competent. We now have a standing order at the lab for her ammonia levels. We plan to take her in every Friday. The doc wants to adjust her lactulose and water pills according to her ammonia level and if she becomes dehydrated. It's a lovely plan, but I still can't get her doctor to look at the test results from last Friday to tell me how to adjust the meds. Weekly blood tests don't do anyone any good if nobody looks at them.
4) The caregiver came out on one of Mom's "good" days - where her stories almost make sense unless you try to verify facts and realize it didn't happen the way she thought it did, or when she thought it did, or who said what and why. She initially believed Mom's delusions. It was rather vindicating when she showed up yesterday to cook Mom food and had the most difficult time explaining to Mom what she was doing, repeating herself because Mom would ask the same questions or raise the same issues every five seconds and forget again, and trying to follow Mom's speech as she never finishes sentences. The first half comes out stuttering and the second half is a new beginning to a new sentence regarding a different topic. Mom was very anxious and incomprehensible. She now sees what everyone else does, and is much much nicer to me. I'm sure she's questioning those delusions now! Unfortunately, Mom thinks she can't afford the caregiver, so when she comes Thursday, she plans to fire her. We could afford her if we streamlined the bills and actually budget the money. We could even afford more if I can get out and get a job. Affording a caregiver and managing Mom's bills reasonably is the entire reason I need conservatorship. She still thinks she doesn't need care and can do everything on her own. It's very clear that she can't anymore.
5) Mom's REALLY trying to stay on her diet! Woohoo! She's trying so hard to gain weight and keep under 1000mg salt/day. Her friend brought her pickles the day she called the cops, but she hasn't opened them. She still thinks she needs to watch calories and spoke with a nutritionist today, which confused her greatly. The nutritionist clearly didn't pay attention to the sodium limit (I'm thinking Mom didn't tell her about it), because she came back with a diabetic diet that included pickles and boullion as "free foods". Mom said she had to buy a lot of dry cereal, but much of that is too high in salt. Even Cheerios is 190mg per 3/4 cup...add milk to that at 125mg per 1/2 cup and you have breakfast at 305mg...a third of her daily intake. And she has 8 meals listed each day. This would bring her way over her limit. I'm sure there was a miscommunication somewhere, but since I'm not conservator, the HIPAA laws restrict the nutritionist to talk to me. Are you catching a theme yet?
6) APS was totally useless. The worker came out the same day as the caregiver - on Mom's "good" day. I was terrified to call APS, because I thought for sure they'd shove her in a home, and the depression she'd have over missing her bed and her dogs would be devastating. She'd give up and let herself die in a home. But this worker wasn't working in Mom's best interest. I was really hoping she would help, but she believed Mom's delusions and didn't want to talk to me. She also refused to see evidence I have of Mom's incompetency. I couldn't believe it! How do you "investigate" anything if you refuse to look at EVIDENCE? I asked her to speak with Mom's sister and friends, who've also witnessed her comprehension and memory problems, but she didn't seem interested in calling anyone. I guess I have nothing to fear from her - she's useless and incapable of helping anyone. She stated that APS was a "reference and referral service ONLY" and had no ability to act. She was rude and arrogant. She decided that Mom was "fine" and didn't need conservatorship. Where was that "investigating" again? She said she's seen hundreds of these cases and Mom is very clear headed. I told her she's wrong and maybe she should talk to her doctor. I told her that everyone else (doctors, family, friends, strangers even!) see this, but somehow she doesn't. She wouldn't open her eyes and was merely indignant about Mom's right being taken away. I understand being protective and Mom being angry, but the worker is supposed to recognize behavior and symptoms and listen to all points of view before deciding anything, and this woman made up her mind in 20 minutes in Mom's bedroom with no factual evidence and only Mom's statement to go on. Very disappointing. I wish we had the same worker that came out the last time. She was respectful and kind and actually wanted to help Mom. The new worker doesn't understand her job description. It doesn't include being a jerk to the caregiver! *I* know I've done right by my Mom and that her delusions are just that - part of her illness. I no longer feel the need to constantly defend myself, even from Mom. It's a lot calmer in the house these days. I simply don't engage in fighting with her and when she accuses me of something I didn't do, I don't fight it. I don't defend myself. I just say "ok" and move on. Sometimes I do explain or tell her I disagree, but I tell her it's okay if we disagree. I've been hugging her more, especially when she's scared and freaking out. I have to be careful, because her body hurts and sometimes touching like hugging is painful. No bear hugs! She's admitting more and more when she can't handle things or when she's too confused or overwhelmed to accomplish a task. Imagine how much less stress she would be under if she wasn't the one making those complicated decisions and her care needs were met without her having to think about it!
Thursday, March 1, 2012
I Quit
Mom has reached a point in her illness that I can no longer help. She does not feel she is sick or needs help. She forgets to take medication and gets confused very easily. Her mood swings define insanity. Her anger is unrestrained and she is extremely abusive. She called the cops again - this time to have me forcibly removed from the home because I refuse to give her pickles.
I am now in need of therapy and medication to handle the stress from 4 years of 24/7 care of a lunatic. I know this is her illness and that's a great explanation of her behavior. It's a lovely reason to not hate her guts entirely. However, she is extremely abusive and having an explanation does not mean I need to tolerate this behavior any longer. I have bleeding ulcers, extreme anxiety, severe depression, migraines, and never sleep. I am done. I love her. I can't do this. No ONE person is designed to be able to do this. There are 24 hours in a day, and humans are expected to work for 8 hours and then have the rest of the day to rest. I have been "on" for 24 hours a day, 7 days a week, for four years (as of next week, RIP Aunt Darlene). Her abusive behavior not only makes it a difficult decision to devote my life to helping her, but it also makes it literally impossible.
There have been arguments that she is "choosing" to wither away. Like a cancer patient may choose to allow the disease to run its course and live as comfortably as possible before imminent death. This is not the case. If it were, I would be fine with giving her whatever she wishes to eat, though it would still cause a lot of problems since she no longer has the mental competency to perform necessary actions like balancing the checkbook or setting up her medication. I would still need cooperation with those things in order for us to be able to live in peace with each other. The real problem is that she is not choosing death. She does not believe she is sick and does not believe that I tell her the truth regarding her malnutrition. She forgets what the doctor said and gets confused. She thinks he tells her to lose weight but eat pickles. Neither is true. She wishes to live and says she will fight to live, and then forgets what she needs to do to get better or thinks she took her meds and didn't and argues. Her doctor has lost his patience with her and wishes to help me with this, but does not know what he can do.
I have asked every government body for help. I have asked every friend/family member for help. I get nowhere. I get nothing (except medication for my own depression, anxiety, and sleeplessness). Even her friends are so afraid of hurting her feelings that they cover (in front of cops, no less!) for her confusion so that they don't know how bad it really is. I do not think her friends realize or accept how sick she is or that their "help" is actually leading her into a coma faster. I feel all of this has been a waste of my life for the last 4 years. I have given up everything to help her, including my own health and sanity, and she is still unwittingly killing herself. It has done neither of us any good.
I will try to help her IF I get full and durable power of attorney. I need to be able to pay bills, order medication on time, speak to her insurance company, etc. I need to be able to make decisions in her best interest. I need to be able to live unafraid that helping her will cause the cops to knock on my door. This is the only way I would help her. Period.
If that does not happen, I will no longer help her. I've already stopped. It has been stated to her many, many times (though she does not remember and does not agree) that if I am not here to take care of her, she will be placed in a home. I will speak with her doctor on Monday to confirm with him that I am no longer her caregiver and he will make arrangements for her to be placed in a permanent nursing home. I wish it wasn't this way, but unless she allows me to help her, we will both die. It's time to save myself. She was the one who taught me that nobody on this planet is worth my life. If she was herself, she would have told me to get out a long time ago.
I am now in need of therapy and medication to handle the stress from 4 years of 24/7 care of a lunatic. I know this is her illness and that's a great explanation of her behavior. It's a lovely reason to not hate her guts entirely. However, she is extremely abusive and having an explanation does not mean I need to tolerate this behavior any longer. I have bleeding ulcers, extreme anxiety, severe depression, migraines, and never sleep. I am done. I love her. I can't do this. No ONE person is designed to be able to do this. There are 24 hours in a day, and humans are expected to work for 8 hours and then have the rest of the day to rest. I have been "on" for 24 hours a day, 7 days a week, for four years (as of next week, RIP Aunt Darlene). Her abusive behavior not only makes it a difficult decision to devote my life to helping her, but it also makes it literally impossible.
There have been arguments that she is "choosing" to wither away. Like a cancer patient may choose to allow the disease to run its course and live as comfortably as possible before imminent death. This is not the case. If it were, I would be fine with giving her whatever she wishes to eat, though it would still cause a lot of problems since she no longer has the mental competency to perform necessary actions like balancing the checkbook or setting up her medication. I would still need cooperation with those things in order for us to be able to live in peace with each other. The real problem is that she is not choosing death. She does not believe she is sick and does not believe that I tell her the truth regarding her malnutrition. She forgets what the doctor said and gets confused. She thinks he tells her to lose weight but eat pickles. Neither is true. She wishes to live and says she will fight to live, and then forgets what she needs to do to get better or thinks she took her meds and didn't and argues. Her doctor has lost his patience with her and wishes to help me with this, but does not know what he can do.
I have asked every government body for help. I have asked every friend/family member for help. I get nowhere. I get nothing (except medication for my own depression, anxiety, and sleeplessness). Even her friends are so afraid of hurting her feelings that they cover (in front of cops, no less!) for her confusion so that they don't know how bad it really is. I do not think her friends realize or accept how sick she is or that their "help" is actually leading her into a coma faster. I feel all of this has been a waste of my life for the last 4 years. I have given up everything to help her, including my own health and sanity, and she is still unwittingly killing herself. It has done neither of us any good.
I will try to help her IF I get full and durable power of attorney. I need to be able to pay bills, order medication on time, speak to her insurance company, etc. I need to be able to make decisions in her best interest. I need to be able to live unafraid that helping her will cause the cops to knock on my door. This is the only way I would help her. Period.
If that does not happen, I will no longer help her. I've already stopped. It has been stated to her many, many times (though she does not remember and does not agree) that if I am not here to take care of her, she will be placed in a home. I will speak with her doctor on Monday to confirm with him that I am no longer her caregiver and he will make arrangements for her to be placed in a permanent nursing home. I wish it wasn't this way, but unless she allows me to help her, we will both die. It's time to save myself. She was the one who taught me that nobody on this planet is worth my life. If she was herself, she would have told me to get out a long time ago.
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