Finally talked to the doctor

[MaggieD]

Don't read this if you don't want to be somewhat depressed. Move right along. I'm talking out loud. If you have congestive heart failure, don't read this. You have been warned.

I talked to mom's doctor yesterday. A shame the nursing home shielded him from my calls, because I have a very good feeling about him after our talk. He explained to me that congestive heart failure becomes more and more difficult to manage as time goes on. Mom's had CHF for, probably, 12 years or more.

At first, there's this really big window for the ability to manage symptoms. (There is no cure.) As the disease progresses, the window becomes smaller and smaller. Mom's at the stage now where her window is small. She can go from stable to dehydrated or dangerous fluid build-up in a matter of just a few days. It can be brought on by something as simple as eating a little more or less salt than usual or, because she doesn't feel good, by not eating much one day at all.

He told me that in the 40+ days she's been under his care, he considers to have had her balanced for two weeks. And that balance crashed last week. Right now, they're withholding diuretics from her because her kidney function and other organ functions are way off. In a day or two, they'll start her back on water pills. They have to because she's building up fluids every day. It's quite easy to see.

Her dementia is worse because of her CHF. She needs oxygen at rest, though not too much. On exertion (standing up/walking), it's "Nelly, pour on the coal." He told me that statistics show that people in mom's condition have six months to a year and that she's eligible for hospice care. That 50% of people in her condition are gone within a year. As I understand it, hospice care would mean that he will STILL try to balance her meds, as this is part of making patients comfortable.

I've looked on the internet, and it appears that, in the opinion of the medical community, too many families (and patients, when they're well enough to make decisions) wait far too long to enter the hospice program because doctors aren't forthcoming about prognosis and people don't really understand that, eventually, it is fatal.

I'm not even sure why "hospice care" is a benefit to a patient if they aren't in pain.

It is a damned shame that we don't know more about end-of-life care. Is the goal to keep someone alive as long as possible? Even though it's not "them" anymore?

I know a woman who is 101 years old. She doesn't know anyone anymore, has to be fed, can't speak, can't walk, has no quality of life. Yet the nursing home (through Medicaid in this instance) does everything in their power to keep her going. Is this what EOL should be?

I'm very apprehensive about taking mom home. *shrug* She probably doesn't really care one way or another. She's already forgotten that I brought her home last Friday and took her back the same day. She thinks one of the nurse's aids has a crush on her. Talks about their walks in the woods. Said he got fresh, and she got mad and made him apologize. (That was in FRONT of me. Hahaha!) She seems to really enjoy the nursing home, actually. Plenty of activity to watch. They're very good to her.

The nursing home is hospice certified. (Something necessary if one is living in the nursing home and wants to enter the hospice program under Medicare.) The monthly charge for her care will be $8,500. If one enters under private pay, they guarantee to keep them under Medicaid once their assets are exhausted. I could just leave her there and NOT put her in hospice. Could put her under palliative care. Or just leave everything as it is: aggressive care sans resuscitation.

Or I could bring her home and try it here with either of those options. I can spend one helluva a lot of money on help without spending $8,500 a month on her room and board.

I keep remembering what an admissions coordinator friend of mine used to tell families: "Your mom saved all her life for a rainy day. Well, folks, it's pouring outside." I need help to make a decision I won't regret, and I don't know where to get it.

 

[joG]

Don't read this if you don't want to be somewhat depressed. Move right along. I'm talking out loud. If you have congestive heart failure, don't read this. You have been warned.

I talked to mom's doctor yesterday. A shame the nursing home shielded him from my calls, because I have a very good feeling about him after our talk. He explained to me that congestive heart failure becomes more and more difficult to manage as time goes on. Mom's had CHF for, probably, 12 years or more.

At first, there's this really big window for the ability to manage symptoms. (There is no cure.) As the disease progresses, the window becomes smaller and smaller. Mom's at the stage now where her window is small. She can go from stable to dehydrated or dangerous fluid build-up in a matter of just a few days. It can be brought on by something as simple as eating a little more or less salt than usual or, because she doesn't feel good, by not eating much one day at all.

He told me that in the 40+ days she's been under his care, he considers to have had her balanced for two weeks. And that balance crashed last week. Right now, they're withholding diuretics from her because her kidney function and other organ functions are way off. In a day or two, they'll start her back on water pills. They have to because she's building up fluids every day. It's quite easy to see.

Her dementia is worse because of her CHF. She needs oxygen at rest, though not too much. On exertion (standing up/walking), it's "Nelly, pour on the coal." He told me that statistics show that people in mom's condition have six months to a year and that she's eligible for hospice care. That 50% of people in her condition are gone within a year. As I understand it, hospice care would mean that he will STILL try to balance her meds, as this is part of making patients comfortable.

I've looked on the internet, and it appears that, in the opinion of the medical community, too many families (and patients, when they're well enough to make decisions) wait far too long to enter the hospice program because doctors aren't forthcoming about prognosis and people don't really understand that, eventually, it is fatal.

I'm not even sure why "hospice care" is a benefit to a patient if they aren't in pain.

It is a damned shame that we don't know more about end-of-life care. Is the goal to keep someone alive as long as possible? Even though it's not "them" anymore?

I know a woman who is 101 years old. She doesn't know anyone anymore, has to be fed, can't speak, can't walk, has no quality of life. Yet the nursing home (through Medicaid in this instance) does everything in their power to keep her going. Is this what EOL should be?

I'm very apprehensive about taking mom home. *shrug* She probably doesn't really care one way or another. She's already forgotten that I brought her home last Friday and took her back the same day. She thinks one of the nurse's aids has a crush on her. Talks about their walks in the woods. Said he got fresh, and she got mad and made him apologize. (That was in FRONT of me. Hahaha!) She seems to really enjoy the nursing home, actually. Plenty of activity to watch. They're very good to her.

The nursing home is hospice certified. (Something necessary if one is living in the nursing home and wants to enter the hospice program under Medicare.) The monthly charge for her care will be $8,500. If one enters under private pay, they guarantee to keep them under Medicaid once their assets are exhausted. I could just leave her there and NOT put her in hospice. Could put her under palliative care. Or just leave everything as it is: aggressive care sans resuscitation.

Or I could bring her home and try it here with either of those options. I can spend one helluva a lot of money on help without spending $8,500 a month on her room and board.

I keep remembering what an admissions coordinator friend of mine used to tell families: "Your mom saved all her life for a rainy day. Well, folks, it's pouring outside." I need help to make a decision I won't regret, and I don't know where to get it.

Growing old is no good, but most of us tend not to do anything about it in time.

 

[Amadeus]

I wish I could properly advise you. I've been in similar situations with family members. On one occasion, it was hospice care (but no charge where I live)... a previous occasion we opted for home stay care until the family member passed. It was the difference between cancer and another illness (repository).

Sorry to hear you're going through this, MaggieD.

 

[lizzie]

Very tough decisions, Maggie. This is one of those things that would scare the hell out of me, no matter which way I went. If it was my mom, and she was getting good care, and she was happy at the nursing home, I would probably leave her there. If she wasn't happy, and I thought I could make her life better by bringing her in to live with me, I'd go that route. Taking care of someone 24/7, by yourself is really tough, but if you have the resources to hire someone to help, it can relieve much of the stress.

Hospice is good, if for nothing else, helping everyone adjust and cope with what's happening, and being a resource and guide. Whatever you decide, best wishes with it.

 

[CanadaJohn]

Don't read this if you don't want to be somewhat depressed. Move right along. I'm talking out loud. If you have congestive heart failure, don't read this. You have been warned.

I talked to mom's doctor yesterday. A shame the nursing home shielded him from my calls, because I have a very good feeling about him after our talk. He explained to me that congestive heart failure becomes more and more difficult to manage as time goes on. Mom's had CHF for, probably, 12 years or more.

At first, there's this really big window for the ability to manage symptoms. (There is no cure.) As the disease progresses, the window becomes smaller and smaller. Mom's at the stage now where her window is small. She can go from stable to dehydrated or dangerous fluid build-up in a matter of just a few days. It can be brought on by something as simple as eating a little more or less salt than usual or, because she doesn't feel good, by not eating much one day at all.

He told me that in the 40+ days she's been under his care, he considers to have had her balanced for two weeks. And that balance crashed last week. Right now, they're withholding diuretics from her because her kidney function and other organ functions are way off. In a day or two, they'll start her back on water pills. They have to because she's building up fluids every day. It's quite easy to see.

Her dementia is worse because of her CHF. She needs oxygen at rest, though not too much. On exertion (standing up/walking), it's "Nelly, pour on the coal." He told me that statistics show that people in mom's condition have six months to a year and that she's eligible for hospice care. That 50% of people in her condition are gone within a year. As I understand it, hospice care would mean that he will STILL try to balance her meds, as this is part of making patients comfortable.

I've looked on the internet, and it appears that, in the opinion of the medical community, too many families (and patients, when they're well enough to make decisions) wait far too long to enter the hospice program because doctors aren't forthcoming about prognosis and people don't really understand that, eventually, it is fatal.

I'm not even sure why "hospice care" is a benefit to a patient if they aren't in pain.

It is a damned shame that we don't know more about end-of-life care. Is the goal to keep someone alive as long as possible? Even though it's not "them" anymore?

I know a woman who is 101 years old. She doesn't know anyone anymore, has to be fed, can't speak, can't walk, has no quality of life. Yet the nursing home (through Medicaid in this instance) does everything in their power to keep her going. Is this what EOL should be?

I'm very apprehensive about taking mom home. *shrug* She probably doesn't really care one way or another. She's already forgotten that I brought her home last Friday and took her back the same day. She thinks one of the nurse's aids has a crush on her. Talks about their walks in the woods. Said he got fresh, and she got mad and made him apologize. (That was in FRONT of me. Hahaha!) She seems to really enjoy the nursing home, actually. Plenty of activity to watch. They're very good to her.

The nursing home is hospice certified. (Something necessary if one is living in the nursing home and wants to enter the hospice program under Medicare.) The monthly charge for her care will be $8,500. If one enters under private pay, they guarantee to keep them under Medicaid once their assets are exhausted. I could just leave her there and NOT put her in hospice. Could put her under palliative care. Or just leave everything as it is: aggressive care sans resuscitation.

Or I could bring her home and try it here with either of those options. I can spend one helluva a lot of money on help without spending $8,500 a month on her room and board.

I keep remembering what an admissions coordinator friend of mine used to tell families: "Your mom saved all her life for a rainy day. Well, folks, it's pouring outside." I need help to make a decision I won't regret, and I don't know where to get it.

You can make no wrong decisions Maggie, when you make those decisions out of love for your mom - remember that.

These are just options for dealing with a situation you have no ability to solve - if you could solve the problem and refused to, then you might have regrets - not in this case. Take into consideration what's right for you as well as what you feel is right for your mom and what you think she's feeling at the time. When my mom was near the end, I could see it in her eyes even though she wasn't able to speak for several years at the end of her life. I just knew that next time she was in serious difficulty, she didn't want to come back and that's the wish I fulfilled by asking doctors to let her rest peacefully for as long as it took. One of my brothers and I sat with her through the night and watched and waited as she passed - I've missed her dearly since that day, as I've missed my father, but I've never regretted making that decision. Don't you ever regret your decision because I know from your previous posts where your decisions come from.

Take care and God bless.

 

[Quag]

I have no advice, but you can have all my sympathy

 

[haymarket]

Maggie - my heart goes out to you and your mom. I watched and participated when my wifes mother went through much the same thing and I can appreciate your situation.

I will not give advice since everybody has to make their own peace with this. I only wish you and your mom the best.

 

[opendebate]

Don't read this if you don't want to be somewhat depressed. Move right along. I'm talking out loud. If you have congestive heart failure, don't read this. You have been warned.

I talked to mom's doctor yesterday. A shame the nursing home shielded him from my calls, because I have a very good feeling about him after our talk. He explained to me that congestive heart failure becomes more and more difficult to manage as time goes on. Mom's had CHF for, probably, 12 years or more.

At first, there's this really big window for the ability to manage symptoms. (There is no cure.) As the disease progresses, the window becomes smaller and smaller. Mom's at the stage now where her window is small. She can go from stable to dehydrated or dangerous fluid build-up in a matter of just a few days. It can be brought on by something as simple as eating a little more or less salt than usual or, because she doesn't feel good, by not eating much one day at all.

He told me that in the 40+ days she's been under his care, he considers to have had her balanced for two weeks. And that balance crashed last week. Right now, they're withholding diuretics from her because her kidney function and other organ functions are way off. In a day or two, they'll start her back on water pills. They have to because she's building up fluids every day. It's quite easy to see.

Her dementia is worse because of her CHF. She needs oxygen at rest, though not too much. On exertion (standing up/walking), it's "Nelly, pour on the coal." He told me that statistics show that people in mom's condition have six months to a year and that she's eligible for hospice care. That 50% of people in her condition are gone within a year. As I understand it, hospice care would mean that he will STILL try to balance her meds, as this is part of making patients comfortable.

I've looked on the internet, and it appears that, in the opinion of the medical community, too many families (and patients, when they're well enough to make decisions) wait far too long to enter the hospice program because doctors aren't forthcoming about prognosis and people don't really understand that, eventually, it is fatal.

I'm not even sure why "hospice care" is a benefit to a patient if they aren't in pain.

It is a damned shame that we don't know more about end-of-life care. Is the goal to keep someone alive as long as possible? Even though it's not "them" anymore?

I know a woman who is 101 years old. She doesn't know anyone anymore, has to be fed, can't speak, can't walk, has no quality of life. Yet the nursing home (through Medicaid in this instance) does everything in their power to keep her going. Is this what EOL should be?

I'm very apprehensive about taking mom home. *shrug* She probably doesn't really care one way or another. She's already forgotten that I brought her home last Friday and took her back the same day. She thinks one of the nurse's aids has a crush on her. Talks about their walks in the woods. Said he got fresh, and she got mad and made him apologize. (That was in FRONT of me. Hahaha!) She seems to really enjoy the nursing home, actually. Plenty of activity to watch. They're very good to her.

The nursing home is hospice certified. (Something necessary if one is living in the nursing home and wants to enter the hospice program under Medicare.) The monthly charge for her care will be $8,500. If one enters under private pay, they guarantee to keep them under Medicaid once their assets are exhausted. I could just leave her there and NOT put her in hospice. Could put her under palliative care. Or just leave everything as it is: aggressive care sans resuscitation.

Or I could bring her home and try it here with either of those options. I can spend one helluva a lot of money on help without spending $8,500 a month on her room and board.

I keep remembering what an admissions coordinator friend of mine used to tell families: "Your mom saved all her life for a rainy day. Well, folks, it's pouring outside." I need help to make a decision I won't regret, and I don't know where to get it.

Hey Mags. So sorry to hear about your mom. Mine is actually in the exact same boat. I know it's hard to see your mom in this condition and feel the weight of the responsibility for making the right decision. CJ is right though. There is no way to "solve" the problem. Or fix it. I would do whatever will make the situation the most bearable for the both of you. Godbless.

 

[Amanda1858]

Sending prayers to you and your Mom, MaggieD. I agree with the people who say to do whatever feels right for you and your Mom. One thing is for sure---your Mom is blessed to have a loving daughter like you.

 

[DiAnna]

Ah, Maggie. Wish I could give you a huge hug in person, but this will have to do... *hugs!!!*

You have dealt with so much, and everything changes on an almost daily basis. What a roller coaster you have been on, bless your heart.

Whatever you decide will be the best for both of you, of that I am sure. You may wish to take her home for a while; then again, knowing how difficult it is to keep her body fluids balanced on a daily basis, you may opt to leave her in a place where she is happy, has activities to watch, and can have 24/7 care. Either decision will be made out of love, and will be best at the time. Just accept that every decision you make now will be subject to change at a moment's notice, and these moments are what you must deal with now.

My thoughts and my heart go out to you.

 

[humbolt]

Brings back memories of my own parents. I only have one piece of advice. Don't second guess your decisions. Best wishes that this goes as well as it can for you and your mother.