Comments on: WELCOME http://dontloseheart.org caregivers caring for caregivers ~ information and support Sat, 19 May 2012 03:41:55 +0000 hourly 1 http://wordpress.org/?v=3.3.2 By: Sharon Miracle http://dontloseheart.org/comment-page-11/#comment-117676 Sharon Miracle Sat, 19 May 2012 03:41:55 +0000 http://dontloseheart.org/?page_id=1185#comment-117676 What a week it has been. My husband went in for the evaluation for his liver transplant on May 7-8, they found something on his EKG and they decided to keep him in the hospital to build him up for a cardiac cath on May 10th. Did the cath, and cleared him for the transplant, but his labs were so out of whack that they decided to keep him until the transplant (!) Then they released him on Sunday, May 13th (I got home from Guinea (emergency leave) that night), I saw him on Monday at my brother-in-law's house in Atlanta (his transplant team is at Piedmont Hospital) and by that evening we were back in the ER with him (fever of 101). While we were in the ER, we got a call that a potential donor had been found. With a possible infection and newly-discovered fluid around his lung, the organ had to be turned down. Heartbreaking...He's been in the hospital this whole week, and was just "reactivated" on the transplant list today (MELD score is currently 32--very high) and is #1 on the list for our region. I keep wondering when I'll have the nervous breakdown, but it never seems to happen. I'm very tired, but also very calm for the most part. Once in a while I let my mind wander down that "what if he doesn't make it through the surgery?" path and I panic, but then I remind myself that the statistics are in our favor and we're very lucky to be in an area with a very short waiting list. He was only on the list for 4 days when that first organ became available, and our doctor said that this was not a fluke. He could be transplanted within days from now. Please think good thoughts for us... What a week it has been. My husband went in for the evaluation for his liver transplant on May 7-8, they found something on his EKG and they decided to keep him in the hospital to build him up for a cardiac cath on May 10th. Did the cath, and cleared him for the transplant, but his labs were so out of whack that they decided to keep him until the transplant (!) Then they released him on Sunday, May 13th (I got home from Guinea (emergency leave) that night), I saw him on Monday at my brother-in-law’s house in Atlanta (his transplant team is at Piedmont Hospital) and by that evening we were back in the ER with him (fever of 101). While we were in the ER, we got a call that a potential donor had been found. With a possible infection and newly-discovered fluid around his lung, the organ had to be turned down. Heartbreaking…He’s been in the hospital this whole week, and was just “reactivated” on the transplant list today (MELD score is currently 32–very high) and is #1 on the list for our region.

I keep wondering when I’ll have the nervous breakdown, but it never seems to happen. I’m very tired, but also very calm for the most part. Once in a while I let my mind wander down that “what if he doesn’t make it through the surgery?” path and I panic, but then I remind myself that the statistics are in our favor and we’re very lucky to be in an area with a very short waiting list. He was only on the list for 4 days when that first organ became available, and our doctor said that this was not a fluke. He could be transplanted within days from now.

Please think good thoughts for us…

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]]> By: Kathy R http://dontloseheart.org/comment-page-11/#comment-117670 Kathy R Sat, 19 May 2012 03:20:09 +0000 http://dontloseheart.org/?page_id=1185#comment-117670 Thank you Marcy for the information. Thank you Marcy for the information.

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]]> By: Marcy http://dontloseheart.org/comment-page-11/#comment-117454 Marcy Fri, 18 May 2012 02:08:56 +0000 http://dontloseheart.org/?page_id=1185#comment-117454 Oh, I certainly hope so. I have so often dealt with worn down family members who just assumed it was too much of a quagmire to traverse when considering ANYTHING to do with government run programs.....and a lot of times it is, but NOT when it comes to the elderly and disabled (even the ones who aren't but have convinced someone they are). People hire attorneys unnecessarily ALL the time, thinking they can "help" them through. Don't do it! Very few cases really need an attorney. Basically, what IS, IS!!! An attorney can't circumvent policy and the best advise I can give is DON'T start "messing" with things, like transferring property, giving away things, trying to hide "stuff", etc. All that does is cause problems that CAN make someone ineligible for the help they so desperately need. You don't have to give your name to call a nursing home OR an HHSC office to ask generic questions. Just please avail yourself of the free information so you won't continue to wear yourself out when all this time, you could be breathing a sigh of relief and SO SO SO many times, your loved one is actually BETTER off, if not just medically, but socially (if they're able to interact with their peers)in a facility than stuck at home, spending MOST of the time alone. I know all the stories about nursing homes and I'd be lying to tell you that they're rumors! There are some better than others and THAT is up to your research to find the best in your area! They prove to be MUCH better if they know family can (and does) pop in at odd times to check on things, so the closer to home they are, the more convenient it is for you to "pop" in! Just call and ask if they have medicaid beds open before you go any further. My parents have each other (not a great situation for my dad) but they were so very social until a few months ago; always on the go. Then....all of a sudden, they're almost prisoners in their own home. That, in itself can knock the will to live RIGHT out of people! You can also look up nursing home medicaid in your state through Google and find (in general) SOME of the answers you might be needing! Accept your blessings, Marcy Oh, I certainly hope so. I have so often dealt with worn down family members who just assumed it was too much of a quagmire to traverse when considering ANYTHING to do with government run programs…..and a lot of times it is, but NOT when it comes to the elderly and disabled (even the ones who aren’t but have convinced someone they are). People hire attorneys unnecessarily ALL the time, thinking they can “help” them through. Don’t do it! Very few cases really need an attorney. Basically, what IS, IS!!! An attorney can’t circumvent policy and the best advise I can give is DON’T start “messing” with things, like transferring property, giving away things, trying to hide “stuff”, etc. All that does is cause problems that CAN make someone ineligible for the help they so desperately need.
You don’t have to give your name to call a nursing home OR an HHSC office to ask generic questions. Just please avail yourself of the free information so you won’t continue to wear yourself out when all this time, you could be breathing a sigh of relief and SO SO SO many times, your loved one is actually BETTER off, if not just medically, but socially (if they’re able to interact with their peers)in a facility than stuck at home, spending MOST of the time alone. I know all the stories about nursing homes and I’d be lying to tell you that they’re rumors! There are some better than others and THAT is up to your research to find the best in your area! They prove to be MUCH better if they know family can (and does) pop in at odd times to check on things, so the closer to home they are, the more convenient it is for you to “pop” in! Just call and ask if they have medicaid beds open before you go any further.
My parents have each other (not a great situation for my dad) but they were so very social until a few months ago; always on the go. Then….all of a sudden, they’re almost prisoners in their own home. That, in itself can knock the will to live RIGHT out of people!
You can also look up nursing home medicaid in your state through Google and find (in general) SOME of the answers you might be needing!
Accept your blessings,
Marcy

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]]> By: Char http://dontloseheart.org/comment-page-11/#comment-117400 Char Thu, 17 May 2012 19:44:35 +0000 http://dontloseheart.org/?page_id=1185#comment-117400 Thank you Marcy The information you have so kindly provided is a great stepping stone. It is difficult to do on your own, this information will make it easier for Kathy and other caregivers to manage. Once again thank you, and best of everything to you too! ~Char Thank you Marcy
The information you have so kindly provided is a great stepping stone. It is difficult to do on your own, this information will make it easier for Kathy and other caregivers to manage. Once again thank you, and best of everything to you too!
~Char

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]]> By: Marcy http://dontloseheart.org/comment-page-11/#comment-117246 Marcy Thu, 17 May 2012 04:19:12 +0000 http://dontloseheart.org/?page_id=1185#comment-117246 Char, Kathy, anyone who needs to know.... Title XIX (through Social Security) is not the only medicaid option for the nursing home care it sounds like you may need. I don't know what state you're in, but just pick a local nursing home, give 'em a call and ask about nursing home medicaid. The business office manager or the social worker there will be the point of contact you need and they are well versed in the resource and income guidelines for facility medicaid. That one call can clear up a lot of misconceptions about nursing home medicaid. There are ALSO programs...usually called something like CBA(stands for community based alternative) that have the same guidelines, but will allow the person to remain in their home environment as long as possible, BUT will give you and your husband the relief you need as caregivers!! Your state's Health and Human Services or Department of Human Services (whatever it's called there) would be the ones to answer the questions about THAT kind of program. PLEASE look into both. At least you'd know what is available and where to go from here! Let these people answer the questions you'll never find the answers to by yourself. It can be VERY entailed and confusing...it's like law school with all the ins and outs of countable and excluded resources, blahblahblah... and there's just no way to wade through it without someone to ask questions of. Until last Friday, I was a medicaid caseworker for the state of Texas (for the last 12 years) so that's why I know about this "stuff". I imagine there are minor differences in each state, but you can always just call that DHS(HHSC) office and ask them all the questions you have.....THEN you'll know! Best of everything to you all. Accept your blessings, Marcy Char, Kathy, anyone who needs to know….
Title XIX (through Social Security) is not the only medicaid option for the nursing home care it sounds like you may need. I don’t know what state you’re in, but just pick a local nursing home, give ‘em a call and ask about nursing home medicaid. The business office manager or the social worker there will be the point of contact you need and they are well versed in the resource and income guidelines for facility medicaid. That one call can clear up a lot of misconceptions about nursing home medicaid. There are ALSO programs…usually called something like CBA(stands for community based alternative) that have the same guidelines, but will allow the person to remain in their home environment as long as possible, BUT will give you and your husband the relief you need as caregivers!! Your state’s Health and Human Services or Department of Human Services (whatever it’s called there) would be the ones to answer the questions about THAT kind of program. PLEASE look into both. At least you’d know what is available and where to go from here! Let these people answer the questions you’ll never find the answers to by yourself. It can be VERY entailed and confusing…it’s like law school with all the ins and outs of countable and excluded resources, blahblahblah… and there’s just no way to wade through it without someone to ask questions of. Until last Friday, I was a medicaid caseworker for the state of Texas (for the last 12 years) so that’s why I know about this “stuff”. I imagine there are minor differences in each state, but you can always just call that DHS(HHSC) office and ask them all the questions you have…..THEN you’ll know!
Best of everything to you all.
Accept your blessings,
Marcy

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]]> By: Kathy R http://dontloseheart.org/comment-page-11/#comment-116055 Kathy R Fri, 11 May 2012 02:18:50 +0000 http://dontloseheart.org/?page_id=1185#comment-116055 Thank you Char. I was told about Title 19 and will look into it. I don't know how much longer we can take care of him. Thank you Char. I was told about Title 19 and will look into it. I don’t know how much longer we can take care of him.

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]]> By: Char http://dontloseheart.org/comment-page-11/#comment-115473 Char Tue, 08 May 2012 22:19:09 +0000 http://dontloseheart.org/?page_id=1185#comment-115473 Hi Kathy Please don't ever think there are others with more serious problems then you have, it's all relative, and yes, there will always be some one that may be worse off, but not at DLH, this is a no judgement zone! Both you and your husband are doing an amazing job of caregiving, which as you are fully aware, is at times extremely overwhelming, and the caring of your brother is a full time job. I had a similar situation with my uncle, a few years back, worked hard all his life, and in the end had some money in the bank, bottom line it paid for his skilled care at a nursing home, until it ran out. The cost was jus about 6,000.00 per month. He (we for him) applied for Title 19, and once accepted, it paid for the rest of his time at the home, until his passing a few years later. Have you thought of this option, it may be a good thing for you to look into at some point. Just an idea, and BTW... venting here is highly recommended, so vent away we listen, and all have problems, none of them have ever been labeled too big or too small. Just know you are not alone in this, and I am very sure there will be others commenting with some great ideas. Try to make some time for you and that amazing husband of yours... Life is short, enjoy as many moments as you can. ~Char Hi Kathy
Please don’t ever think there are others with more serious problems then you have, it’s all relative, and yes, there will always be some one that may be worse off, but not at DLH, this is a no judgement zone!
Both you and your husband are doing an amazing job of caregiving, which as you are fully aware, is at times extremely overwhelming, and the caring of your brother is a full time job. I had a similar situation with my uncle, a few years back, worked hard all his life, and in the end had some money in the bank, bottom line it paid for his skilled care at a nursing home, until it ran out. The cost was jus about 6,000.00 per month. He (we for him) applied for Title 19, and once accepted, it paid for the rest of his time at the home, until his passing a few years later. Have you thought of this option, it may be a good thing for you to look into at some point. Just an idea, and BTW… venting here is highly recommended, so vent away we listen, and all have problems, none of them have ever been labeled too big or too small.

Just know you are not alone in this, and I am very sure there will be others commenting with some great ideas. Try to make some time for you and that amazing husband of yours… Life is short, enjoy as many moments as you can.

~Char

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]]> By: Kathy R http://dontloseheart.org/comment-page-11/#comment-115267 Kathy R Tue, 08 May 2012 06:25:31 +0000 http://dontloseheart.org/?page_id=1185#comment-115267 For six years now my husband and I have been care givers for my older brother age 77. He has numerous health problems, heart disease, diabetes, spinal problems that are now making it difficult for him to walk. He should be in a nursing home but the cost to put him in one is a minimum of $6000.00 a month plus the cost of all his meds. I am so overwhelmed with taking care of him. He keeps falling down now as he loses his balance all the time. He also has problems with his blood sugar dropping to dangerously low levels that could kill him. We have to keep after him to check his levels as he forgets to do it. We moved him into the house next door to us a year and a half ago so we could keep a better watch on him. Today we had an aid come in for the first time to help him take a shower and tomorrow he will have a physical therapist working with him. Medicare will cover this for a while but after that it's his responsibility to pay for it. I's nice to have the help but it can't last forever. I guess I'm just writing this to vent. I know that others have problems way more serious than mine but taking care of someone for over six years is very draining and I'm just about down to my last drop. I manage everything for him. If it wasn't for my husband I never could have taken on this task. He helps me in so many ways I can't possibly name them all and this isn't even his blood kin. We took this on fully knowing it was going to be hard but we had no choice someone had to take care of him as he could no longer do it himself. I just pray that God gives us the strength to handle this. Thanks for listening. Kathy R For six years now my husband and I have been care givers for my older brother age 77. He has numerous health problems, heart disease, diabetes, spinal problems that are now making it difficult for him to walk. He should be in a nursing home but the cost to put him in one is a minimum of $6000.00 a month plus the cost of all his meds. I am so overwhelmed with taking care of him. He keeps falling down now as he loses his balance all the time. He also has problems with his blood sugar dropping to dangerously low levels that could kill him. We have to keep after him to check his levels as he forgets to do it. We moved him into the house next door to us a year and a half ago so we could keep a better watch on him.

Today we had an aid come in for the first time to help him take a shower and tomorrow he will have a physical therapist working with him. Medicare will cover this for a while but after that it’s his responsibility to pay for it. I’s nice to have the help but it can’t last forever.

I guess I’m just writing this to vent. I know that others have problems way more serious than mine but taking care of someone for over six years is very draining and I’m just about down to my last drop. I manage everything for him. If it wasn’t for my husband I never could have taken on this task. He helps me in so many ways I can’t possibly name them all and this isn’t even his blood kin. We took this on fully knowing it was going to be hard but we had no choice someone had to take care of him as he could no longer do it himself. I just pray that God gives us the strength to handle this.

Thanks for listening.

Kathy R

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]]> By: Laura http://dontloseheart.org/comment-page-11/#comment-113262 Laura Sun, 29 Apr 2012 16:29:49 +0000 http://dontloseheart.org/?page_id=1185#comment-113262 Oh, Sharon! I have thought and thought of some way to comfort you during the horrible ordeal you are going through. Your posts have brought back some pretty horrific memories, but they are nothing compared to your situation. Although, I must say that I am SO proud to read how you are handling your situation. You are truly an inspiration to all caregivers as to the lengths we can go and what we can endure for those we love! Now, I will try and give you a little advice, but remember that I do not know you or David so anything I can say is just extrapolated from things you have already said. You have been going through a lot for a very long time and, at least in my case, I lost sight of the fact that all we were going through was TEMPORARY. Everything will change after David gets a transplant. I don't know your David's personality, but MY David would throw this woman out on her ear once he was well and yours might, too once all this is over. So it may be that she thinks she has you over a barrel right now (and she might), but I don't see her contacting DSS because she would lose too much control AND once David is well again, she will have to deal with him. These are just a couple of things for you to think about at this moment. I KNOW it feels like it will never end and she will be a thorn in your side forever, but it may be just be a bitter pill you will have to swallow in the short term, especially if she really is helping right now while you are unable to be there yourself. Just remember she is just an employee and when you come home and/or David is well (which ever comes first) you can get rid of her and all her little ploys will be irrelevant. I hope you can pick some crumb out of this to help you keep your sanity right now. As always, my prayers and thoughts are with you all...... Laura Oh, Sharon! I have thought and thought of some way to comfort you during the horrible ordeal you are going through. Your posts have brought back some pretty horrific memories, but they are nothing compared to your situation. Although, I must say that I am SO proud to read how you are handling your situation. You are truly an inspiration to all caregivers as to the lengths we can go and what we can endure for those we love!

Now, I will try and give you a little advice, but remember that I do not know you or David so anything I can say is just extrapolated from things you have already said.

You have been going through a lot for a very long time and, at least in my case, I lost sight of the fact that all we were going through was TEMPORARY. Everything will change after David gets a transplant.

I don’t know your David’s personality, but MY David would throw this woman out on her ear once he was well and yours might, too once all this is over. So it may be that she thinks she has you over a barrel right now (and she might), but I don’t see her contacting DSS because she would lose too much control AND once David is well again, she will have to deal with him.

These are just a couple of things for you to think about at this moment. I KNOW it feels like it will never end and she will be a thorn in your side forever, but it may be just be a bitter pill you will have to swallow in the short term, especially if she really is helping right now while you are unable to be there yourself.

Just remember she is just an employee and when you come home and/or David is well (which ever comes first) you can get rid of her and all her little ploys will be irrelevant.

I hope you can pick some crumb out of this to help you keep your sanity right now.

As always, my prayers and thoughts are with you all……
Laura

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]]> By: Sharon Miracle http://dontloseheart.org/comment-page-11/#comment-113150 Sharon Miracle Sun, 29 Apr 2012 05:15:09 +0000 http://dontloseheart.org/?page_id=1185#comment-113150 I agree, Jean, and I learned an important lesson from this, i.e., trust your gut. I had kept this person at arm's length for a very long time, even as a friend, because she has problems with tact and boundaries, but I needed her help. Now I'm learning that she's more than a bit of a pot stirrer and can be manipulative. She told me the other night that our neighbors, who we've always been friends with, told our kids' music teacher that they saw our girls playing outside unsupervised and, if they had to, would call Child Protective Services. David said he was watching them from the window, and we live on a cul-de-sac (see: no traffic). The neighbors say that what was actually said was "I hope NO ONE calls DSS, and we want to know how we can help." Who to believe? Someone who seems manipulative or a neighbor with whom you've had a few minor disagreements (but nothing too serious) over the past 9 years? My family is concerned, because she's causing ME as many problems as she's solving. I believed her at first and was livid, thinking that someone who knows what we're going through could betray us like that. I was imagining what COULD happen if someone DID call DSS, like me having to come home to sort out the mess and possibly losing my job. My cousin, a very sharp lady ten years older than me, suspects that she twisted this story to justify her role in our lives and to possibly send a very subtle message, i.e., "if you ever decide to get rid of me, I'll be sure to cause you trouble," and that really, really disturbs me. "Strangely" I received an email from the music teacher right after this incident, saying that the kids have been behaving better in class since Annmarie (who she doesn't know from Adam) started caring for them. Better behavior in just 2 weeks from kids who are extremely well behaved in school? Hmmmmm...Annmarie was a salesman by profession (she's been out of work for a while), and from what she's told me a VERY good salesman. I have to wonder... I agree, Jean, and I learned an important lesson from this, i.e., trust your gut. I had kept this person at arm’s length for a very long time, even as a friend, because she has problems with tact and boundaries, but I needed her help. Now I’m learning that she’s more than a bit of a pot stirrer and can be manipulative. She told me the other night that our neighbors, who we’ve always been friends with, told our kids’ music teacher that they saw our girls playing outside unsupervised and, if they had to, would call Child Protective Services. David said he was watching them from the window, and we live on a cul-de-sac (see: no traffic). The neighbors say that what was actually said was “I hope NO ONE calls DSS, and we want to know how we can help.” Who to believe? Someone who seems manipulative or a neighbor with whom you’ve had a few minor disagreements (but nothing too serious) over the past 9 years? My family is concerned, because she’s causing ME as many problems as she’s solving. I believed her at first and was livid, thinking that someone who knows what we’re going through could betray us like that. I was imagining what COULD happen if someone DID call DSS, like me having to come home to sort out the mess and possibly losing my job. My cousin, a very sharp lady ten years older than me, suspects that she twisted this story to justify her role in our lives and to possibly send a very subtle message, i.e., “if you ever decide to get rid of me, I’ll be sure to cause you trouble,” and that really, really disturbs me. “Strangely” I received an email from the music teacher right after this incident, saying that the kids have been behaving better in class since Annmarie (who she doesn’t know from Adam) started caring for them. Better behavior in just 2 weeks from kids who are extremely well behaved in school? Hmmmmm…Annmarie was a salesman by profession (she’s been out of work for a while), and from what she’s told me a VERY good salesman. I have to wonder…

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