Things I'm learning . . .

[MaggieD]

Okay, last thread I'll start about Mom. But it has occurred to me that "we learn late" about death and dying -- or caring for our parents. So I'm starting this thread to pass along what I'm learning. And perhaps you have some tips/pointers you'd like to share as well. Those who've been through it have a lot of knowledge the rest of us don't have.

First, Medicare is wonderful. The social worker at the hospital is your friend. They will line you up with more resources than you can probably use...physical therapy, occupational therapy, visiting nurses, personal assistance people. You can't imagine. All free for the asking, by the way. They are filled with helpful information about that which we know nothing and are eager to share.

Also available are Hospice Services, provided by Medicare through your local hospital or local hospice center. Have a middle-of-the-night problem? The regular nursing staff, if you would page them, will refer you to 911. In Hospice? They will come to your home right then and there.

Your local fire department (at least here in Illinois) will provide free-of-charge help. For example, today, I was transferring Mom from one place to another, and she just couldn't stand up anymore. So I eased her to the floor and wondered what I'd do next. I called the non-emergency number of the police department, they connected me with the fire department, and THEY sent over two paramedics to help me get her back where she belonged. They told me to call them ANY TIME if I needed help getting her in bed . . . in the car . . . WHATEVER. Said they do that all the time. No charge.

I've learned that sometimes what we think SHOULD happen is the LAST thing that should happen. Example: Mom has heart failure. She's on powerful diuretics to get rid of water. Too MUCH, as a matter of fact. She's completely dehydrated as the visiting nurse confirmed today. Drastic medicine change that I hope will help and explain many of her symptoms. She explained, though, that, if Mom went to the hospital and they gave her fluid IV's, it would probably put her into irreversible heart failure. Why? Because your body is so amazing that it tries REALLY HARD to work with what it's got. Tries desperately to find its footing. And if the body were suddenly flooded with fluids? The changes the body has already made would go absolutely haywire. With deadly results. Easy does it.

I learned that, even with the most airtight healthcare power of attorney? If you call the paramedics, they are bound by law to resuscitate. There is a special form that must be signed by the doctor that releases them from this requirement. So what's the lesson? If you think your loved one has died? And it's a blessing, as it sometimes is? Don't call the paramedics right away unless you have that form. They will give the person CPR (breaking frail ribs, etc., etc.) and try to bring them back if you don't. Who knew? (Maybe it's just Illinois . . . but wouldn't that be a good thing to know?)

I've learned that humor is a wonderful thing. That sharing my problems/concerns/thought process with others is a Godsend. I know I'm going to learn more.

Do you have anything to share from your personal care giving experiences?

For those who find this depressing? I understand and apologize. We don't want to talk about these things. But that never stops Maggie.

 

[Kal'Stang]

For those who find this depressing? I understand and apologize. We don't want to talk about these things. But that never stops Maggie.

Honestly MaggieD, this is one subject that I avoid even to myself. With my parents getting older and older (70's now) my biggest fear is of them dying. They have been such a huge part of my life that I simply cannot fathom thinking of life without them. Even writing this post is making me tear up just thinking about it. My mom is displaying early stages of alzheimer's, has wicked fibromyalgia and my dad has diabetes in which he has to take insulin before every meal, thyroid problems, and clots in his legs which could cut loose at anytime but my folks are too poor to pay for a surgery to fix. I thank every single day that they live through.

.....

 

[MaggieD]

Honestly MaggieD, this is one subject that I avoid even to myself. With my parents getting older and older (70's now) my biggest fear is of them dying. They have been such a huge part of my life that I simply cannot fathom thinking of life without them. Even writing this post is making me tear up just thinking about it. My mom is displaying early stages of alzheimer's, has wicked fibromyalgia and my dad has diabetes in which he has to take insulin before every meal, thyroid problems, and clots in his legs which could cut loose at anytime but my folks are too poor to pay for a surgery to fix. I thank every single day that they live through.

.....

Kal, it's so hard, isn't it? I get it.

Do your parents have Medicare? If so, there's no surgery they can't afford....? I guess I don't understand this...

 

[Kal'Stang]

Kal, it's so hard, isn't it? I get it.

Do your parents have Medicare? If so, there's no surgery they can't afford....? I guess I don't understand this...

The lowest form of Medicare from what I understand. While it will pay in part it won't pay for everything from what I can understand. To be honest though I'm not really sure. Like I said, this is one subject which I normally avoid....like the plague...

 

[KevinKohler]

My biggest fear for my parents isn't them dying, it's them being left alone to rot someplace, unloved. They live in SC, and are adamant about staying there. I live in CT, and I'm not moving back to SC. I have a family, a house, a career (ish), too much to try to uproot at this point.

 

[MaggieD]

The lowest form of Medicare from what I understand. While it will pay in part it won't pay for everything from what I can understand. To be honest though I'm not really sure. Like I said, this is one subject which I normally avoid....like the plague...

If they really need surgery, and it would be performed in hospital rather than outpatient, they'd want to have a supplement of some sort. Hopefully, they are honest with their doctors about the insurance they have (Medicare is just Medicare...."supplements" that help is something else. Normally, supplements pay nothing unless one is in the hospital.)

Sometimes we have to take the lead -- the roles reverse -- and we have to do the leg work. (Not meaning to butt in, just a suggestion.)

 

[MaggieD]

My biggest fear for my parents isn't them dying, it's them being left alone to rot someplace, unloved. They live in SC, and are adamant about staying there. I live in CT, and I'm not moving back to SC. I have a family, a house, a career (ish), too much to try to uproot at this point.

Sometimes we are our own worst enemies...

 

[jamesrage]

were suddenly flooded with fluids? The changes the body has already made would go absolutely haywire. With deadly results. Easy does it.

I learned that, even with the most airtight healthcare power of attorney? If you call the paramedics, they are bound by law to resuscitate. There is a special form that must be signed by the doctor that releases them from this requirement. So what's the lesson? If you think your loved one has died? And it's a blessing, as it sometimes is? Don't call the paramedics right away unless you have that form. They will give the person CPR (breaking frail ribs, etc., etc.) and try to bring them back if you don't. Who knew? (Maybe it's just Illinois . . . but wouldn't that be a good thing to know?)

My family was in a similar situation back in April.If have a DNR keep it on you or make sure what ever relative or loved one with you has a copy.

 

[sawyerloggingon]

Speaking as a man that will be old soon, I am going to kill myself before I become a huge burden on my family. I'm not saying that is the right thing to do and everyone should do it but I will.

 

[CanadaJohn]

Okay, last thread I'll start about Mom. But it has occurred to me that "we learn late" about death and dying -- or caring for our parents. So I'm starting this thread to pass along what I'm learning. And perhaps you have some tips/pointers you'd like to share as well. Those who've been through it have a lot of knowledge the rest of us don't have.

First, Medicare is wonderful. The social worker at the hospital is your friend. They will line you up with more resources than you can probably use...physical therapy, occupational therapy, visiting nurses, personal assistance people. You can't imagine. All free for the asking, by the way. They are filled with helpful information about that which we know nothing and are eager to share.

Also available are Hospice Services, provided by Medicare through your local hospital or local hospice center. Have a middle-of-the-night problem? The regular nursing staff, if you would page them, will refer you to 911. In Hospice? They will come to your home right then and there.

Your local fire department (at least here in Illinois) will provide free-of-charge help. For example, today, I was transferring Mom from one place to another, and she just couldn't stand up anymore. So I eased her to the floor and wondered what I'd do next. I called the non-emergency number of the police department, they connected me with the fire department, and THEY sent over two paramedics to help me get her back where she belonged. They told me to call them ANY TIME if I needed help getting her in bed . . . in the car . . . WHATEVER. Said they do that all the time. No charge.

I've learned that sometimes what we think SHOULD happen is the LAST thing that should happen. Example: Mom has heart failure. She's on powerful diuretics to get rid of water. Too MUCH, as a matter of fact. She's completely dehydrated as the visiting nurse confirmed today. Drastic medicine change that I hope will help and explain many of her symptoms. She explained, though, that, if Mom went to the hospital and they gave her fluid IV's, it would probably put her into irreversible heart failure. Why? Because your body is so amazing that it tries REALLY HARD to work with what it's got. Tries desperately to find its footing. And if the body were suddenly flooded with fluids? The changes the body has already made would go absolutely haywire. With deadly results. Easy does it.

I learned that, even with the most airtight healthcare power of attorney? If you call the paramedics, they are bound by law to resuscitate. There is a special form that must be signed by the doctor that releases them from this requirement. So what's the lesson? If you think your loved one has died? And it's a blessing, as it sometimes is? Don't call the paramedics right away unless you have that form. They will give the person CPR (breaking frail ribs, etc., etc.) and try to bring them back if you don't. Who knew? (Maybe it's just Illinois . . . but wouldn't that be a good thing to know?)

I've learned that humor is a wonderful thing. That sharing my problems/concerns/thought process with others is a Godsend. I know I'm going to learn more.

Do you have anything to share from your personal care giving experiences?

For those who find this depressing? I understand and apologize. We don't want to talk about these things. But that never stops Maggie.

I'm in Canada, but the things you point out are all available here too provided you seek them out, you strongly advocate, and you don't take no for an answer. After spending about 15 years looking after my mom and several years before that looking after my dad, I can strongly state that the only true advocate your parent has is a dedicated family member. Without that dedicated family member, the healthcare professionals looking after seniors are just to flooded with needs that some will just fall through the cracks.

Here in Ontario, our system is starting to make more and more services available in the home because they've finally figured out that most people want to stay home and it costs the system a hell of a lot less to keep people in their homes.

Not all people like to hear it, but I strongly believe that a person is morally as responsible for a failing parent as they are for a child they bring into the world. My parents gave me everything they could and gave up their lives for the benefit of my life and that of my brothers. I would never have been able to live with myself had I not provide for my parents when they needed help.

You'll have lots of bad days - I had some terrible days - you'll feel trapped sometimes and in fact sometimes you will be trapped - but there are also great feelings of accomplishment and even if she can't always express it, your mom is incredibly grateful for all you're doing.

God bless you on your new journey.

 

[ttwtt78640]

The lowest form of Medicare from what I understand. While it will pay in part it won't pay for everything from what I can understand. To be honest though I'm not really sure. Like I said, this is one subject which I normally avoid....like the plague...

It pays for a lot but, as my dad found out when my mother was dying, you must spend up half of the estate before it "takes over".

 

[Beaudreaux]

The lowest form of Medicare from what I understand. While it will pay in part it won't pay for everything from what I can understand. To be honest though I'm not really sure. Like I said, this is one subject which I normally avoid....like the plague...

AARP has lowered its age limit for membership, and has very, very cheap Medi-Gap insurance to pay the portion of costs not covered by Medicare, and may even work with Medicaid.

 

[sangha]

It pays for a lot but, as my dad found out when my mother was dying, you must spend up half of the estate before it "takes over".

You can have an atty set up a trust to deal with that

 

[Beaudreaux]

Okay, last thread I'll start about Mom. But it has occurred to me that "we learn late" about death and dying -- or caring for our parents. So I'm starting this thread to pass along what I'm learning. And perhaps you have some tips/pointers you'd like to share as well. Those who've been through it have a lot of knowledge the rest of us don't have.

First, Medicare is wonderful. The social worker at the hospital is your friend. They will line you up with more resources than you can probably use...physical therapy, occupational therapy, visiting nurses, personal assistance people. You can't imagine. All free for the asking, by the way. They are filled with helpful information about that which we know nothing and are eager to share.

Also available are Hospice Services, provided by Medicare through your local hospital or local hospice center. Have a middle-of-the-night problem? The regular nursing staff, if you would page them, will refer you to 911. In Hospice? They will come to your home right then and there.

Your local fire department (at least here in Illinois) will provide free-of-charge help. For example, today, I was transferring Mom from one place to another, and she just couldn't stand up anymore. So I eased her to the floor and wondered what I'd do next. I called the non-emergency number of the police department, they connected me with the fire department, and THEY sent over two paramedics to help me get her back where she belonged. They told me to call them ANY TIME if I needed help getting her in bed . . . in the car . . . WHATEVER. Said they do that all the time. No charge.

I've learned that sometimes what we think SHOULD happen is the LAST thing that should happen. Example: Mom has heart failure. She's on powerful diuretics to get rid of water. Too MUCH, as a matter of fact. She's completely dehydrated as the visiting nurse confirmed today. Drastic medicine change that I hope will help and explain many of her symptoms. She explained, though, that, if Mom went to the hospital and they gave her fluid IV's, it would probably put her into irreversible heart failure. Why? Because your body is so amazing that it tries REALLY HARD to work with what it's got. Tries desperately to find its footing. And if the body were suddenly flooded with fluids? The changes the body has already made would go absolutely haywire. With deadly results. Easy does it.

I learned that, even with the most airtight healthcare power of attorney? If you call the paramedics, they are bound by law to resuscitate. There is a special form that must be signed by the doctor that releases them from this requirement. So what's the lesson? If you think your loved one has died? And it's a blessing, as it sometimes is? Don't call the paramedics right away unless you have that form. They will give the person CPR (breaking frail ribs, etc., etc.) and try to bring them back if you don't. Who knew? (Maybe it's just Illinois . . . but wouldn't that be a good thing to know?)

I've learned that humor is a wonderful thing. That sharing my problems/concerns/thought process with others is a Godsend. I know I'm going to learn more.

Do you have anything to share from your personal care giving experiences?

For those who find this depressing? I understand and apologize. We don't want to talk about these things. But that never stops Maggie.

Glad it helps you to share. And as far as I'm concerned, you can post as many threads about Mom as you like.

My wife and I went through this back in 2011 with her father, who was the only father I ever knew. So we both lost our Dad at the same time. I think it made it easier on us as a couple, becuase we went through it with the same emotions and pain, and because of that were able to help each other better to make it through it.

He had a very rare form of a blood disease. He was diagnosed in 2001 and we were told he had 3 months to live. We found only five doctors in the entire world that specialized in that disease, and we were lucky enough that one was at the University of Tennessee which is only about five hours from our house. He was with us for another ten years because of the that doctor and his radical treatments. He was 89 when he passed.

The biggest problem we had with Medicare was the three day limit for hospital stays that went into effect near the end of his life. We would have him admitted, then three days later take him home, then have to wait a week with home nursing and then we could take him back. He had Renal failure toward the end and the hospital was the only option for treatment.

We didn't use Hospice. He didn't want them involved, even though my family volunteers at Hospice and all the staff are like family to us.

My wife had Full Power of Attorney, including Medical Power of Attorney, but we also had a DNR that she kept copies of all of them on her, as well her father and her mother to make sure a copy was always available.

The last words here Dad said to her when we took him to the hospital for the last time was, "Don't leave me alone." Her Mom couldn't sit with him, and he knew that. She and I stayed with him for the five days he hung on. The Medicare lady came up to discuss discharge at three days, and our doctor, a personal friend and member of our church, transferred him to ICU so they couldn't kick him out and make him go to Hospice against his wishes. You need to be aware of that.

I hope you and your Mom all the best and if you have any specific questions, I would be glad to answer them via PM.

 

[MaggieD]

I'm in Canada, but the things you point out are all available here too provided you seek them out, you strongly advocate, and you don't take no for an answer. After spending about 15 years looking after my mom and several years before that looking after my dad, I can strongly state that the only true advocate your parent has is a dedicated family member. Without that dedicated family member, the healthcare professionals looking after seniors are just to flooded with needs that some will just fall through the cracks.

Here in Ontario, our system is starting to make more and more services available in the home because they've finally figured out that most people want to stay home and it costs the system a hell of a lot less to keep people in their homes.

Not all people like to hear it, but I strongly believe that a person is morally as responsible for a failing parent as they are for a child they bring into the world. My parents gave me everything they could and gave up their lives for the benefit of my life and that of my brothers. I would never have been able to live with myself had I not provide for my parents when they needed help.

You'll have lots of bad days - I had some terrible days - you'll feel trapped sometimes and in fact sometimes you will be trapped - but there are also great feelings of accomplishment and even if she can't always express it, your mom is incredibly grateful for all you're doing.

God bless you on your new journey.

I feel exactly the same way as you do, Canada John. I know it won't be easy. But the journey will be well worth it. Well worth it. I could no more put Mom in a nursing home (never say never, of course) than the Man in the Moon, as they say.

I so agree with you about advocacy. Without that third party to advocate for them, they are lost. Doctor needs to up his contributions for tests to his member hospital? Without YOU saying, "No, I don't think so," your loved one is likely to be one of those contributions. Useless tests for things one would not treat anyway. A month ago, Mom's doctor suggested a mammogram. I waited for her answer . . . knowing I'd over-rule the wrong one by advising her against it -- but she said, "No way." A mammogram. Really? Slow day in radiology? (Sorry, I can't help it. I always follow the money. And Medicare patients carry their Gold Card everywhere.)

You've traveled the journey. Thank you for sharing some of it with us. And thank you for your very kind words.

 

[ttwtt78640]

You can have an atty set up a trust to deal with that

I don't think so, they even go back several years to check for "gifts" used to reduce the estate. I don't doubt that it could have been done many years in advance, but they are quite strict about your finincial matters at the time of treatment.

 

[MaggieD]

Glad it helps you to share. And as far as I'm concerned, you can post as many threads about Mom as you like.

My wife and I went through this back in 2011 with her father, who was the only father I ever knew. So we both lost our Dad at the same time. I think it made it easier on us as a couple, becuase we went through it with the same emotions and pain, and because of that were able to help each other better to make it through it.

He had a very rare form of a blood disease. He was diagnosed in 2001 and we were told he had 3 months to live. We found only five doctors in the entire world that specialized in that disease, and we were lucky enough that one was at the University of Tennessee which is only about five hours from our house. He was with us for another ten years because of the that doctor and his radical treatments. He was 89 when he passed.

The biggest problem we had with Medicare was the three day limit for hospital stays that went into effect near the end of his life. We would have him admitted, then three days later take him home, then have to wait a week with home nursing and then we could take him back. He had Renal failure toward the end and the hospital was the only option for treatment.

We didn't use Hospice. He didn't want them involved, even though my family volunteers at Hospice and all the staff are like family to us.

My wife had Full Power of Attorney, including Medical Power of Attorney, but we also had a DNR that she kept copies of all of them on her, as well her father and her mother to make sure a copy was always available.

The last words here Dad said to her when we took him to the hospital for the last time was, "Don't leave me alone." Her Mom couldn't sit with him, and he knew that. She and I stayed with him for the five days he hung on. The Medicare lady came up to discuss discharge at three days, and our doctor, a personal friend and member of our church, transferred him to ICU so they couldn't kick him out and make him go to Hospice against his wishes. You need to be aware of that.

I hope you and your Mom all the best and if you have any specific questions, I would be glad to answer them via PM.

Thank you very much for your meaningful post. Debate Politics, because of you and others like you, has been a wonderful therapy for me during this stressful time. *hugs*

 

[MaggieD]

I don't think so, they even go back several years to check for "gifts" used to reduce the estate. I don't doubt that it could have been done many years in advance, but they are quite strict about your finincial matters at the time of treatment.

Five-year clawback is my understanding. It should be that way, in my opinion. Our parents (we) save all of our lives for a rainy day. Sometimes it's pouring outside.

 

[sangha]

I don't think so, they even go back several years to check for "gifts" used to reduce the estate. I don't doubt that it could have been done many years in advance, but they are quite strict about your finincial matters at the time of treatment.

I'm no lawyer, so I"m not certain, but I'm pretty sure that applies only to receiving long-term care such as a nursing home or hospice. I don't think the look-back period has anything to do with hospitalization or medical procedures, etc

 

[MaggieD]

I'm no lawyer, so I"m not certain, but I'm pretty sure that applies only to receiving long-term care such as a nursing home or hospice. I don't think the look-back period has anything to do with hospitalization or medical procedures, etc

I'm fairly certain you're correct here. In fact, I'd bet money on it.

Edit: Hospice is free on Medicare.

 

[lizzie]

The lowest form of Medicare from what I understand. While it will pay in part it won't pay for everything from what I can understand. To be honest though I'm not really sure. Like I said, this is one subject which I normally avoid....like the plague...

There are doctors and medical facilities who will accept Medicare assignment, or iow, will take the amount that Medicare pays without demaning additional pay. You may want to check around, but that is what happens in this part of the country. Also, my mother is on a Medicare supplement which doesn't cost her extra (through United Healthcare iirc), so you might want to check into that and see what is available. If I'm not mistaken, she got that coverage through AARP.

 

[lizzie]

Maggie- I suspect you are referring to an out of hospital DNR, on the code status of people who are in their homes when something goes awry. If certain income requirements are met (low income) you can get a "sitter"-type service which is funded by the state, at least here in Texas. They will spend a set amount of time in the home, do light housekeeping, grocer shopping and such. You may want to see if that is available there.

 

[sangha]

My understanding is that Medicaid benefits can vary from state to state

One place to go some free advice about what services are available in your state is Legal Aid, many of which have lawyers specializing in elder law. Though they have income standards, those general only apply to people who they are going to represent in a legal case. If you go to one of their offices, explain your situation and tell them that you just want some advice, they will probably be happy to assist you.

 

[MaggieD]

Maggie- I suspect you are referring to an out of hospital DNR, on the code status of people who are in their homes when something goes awry. If certain income requirements are met (low income) you can get a "sitter"-type service which is funded by the state, at least here in Texas. They will spend a set amount of time in the home, do light housekeeping, grocer shopping and such. You may want to see if that is available there.

Right. They told me it only applies to paramedics called in on 911. Hospital's different. Mom had housekeeping for $7/hour -- 2 hours twice a month -- through a service like that when she was home. Great service. The gal would come and spend 3 or 4 hours with her, just visiting. The cleaning wasn't half as important as "the touch". Thanks for the prod to look at caregiving. It would be nice -- as it is now, either Tom or I have to be home.

 

[lizzie]

Right. They told me it only applies to paramedics called in on 911. Hospital's different. Mom had housekeeping for $7/hour -- 2 hours twice a month -- through a service like that when she was home. Great service. The gal would come and spend 3 or 4 hours with her, just visiting. The cleaning wasn't half as important as "the touch". Thanks for the prod to look at caregiving. It would be nice -- as it is now, either Tom or I have to be home.

Yes, Maggie, you still need your "me" time. Caregiving 24 hours/day is very stressful. It is very hard to watch your parents go downhill before your very eyes. It takes a good bit of patience, and it also takes courage to watch it without panicking when their condition gets serious, as in *dying* serious. When it gets to that point, your impulse is to just wish it would be over instantaneously, but it unfortunately doesn't usually happen that way. When my dad was in his last days, we were literally praying for it to be over. It's hard to watch someone that you love holding onto life, when there is no chance of a quality life, and you know that their living will only present decline and render them unable to walk, talk, eat, or even interact in a meaningful way. Best wishes and hugs to you, Maggie.