Comments for Don't Lose Heart http://dontloseheart.org caregivers caring for caregivers ~ information and support Fri, 18 May 2012 17:28:03 +0000 hourly 1 http://wordpress.org/?v=3.3.2 Comment on A NEW STORY- Laura B by Melisa http://dontloseheart.org/stories/a-new-story-lbl/comment-page-1/#comment-117578 Melisa Fri, 18 May 2012 17:28:03 +0000 http://dontloseheart.org/?page_id=3745#comment-117578 Courageous is the word that comes to mind when I think of you three. I happened to be talking with an acquaintance (probably a friend but we only meet in passing at the Donate Life offices that I volunteer at) who after I (out of no where starting tell her our story and started crying while doing so) said to me that I am so courageous. I cried of course when I heard those words too. And so I need to pass on that very powerful word to you. YOU are courageous. Laura, you write with grace and tell your truth. Thank you for being on this earth. I connected to your story even though mine is very different. With love, Melisa Courageous is the word that comes to mind when I think of you three. I happened to be talking with an acquaintance (probably a friend but we only meet in passing at the Donate Life offices that I volunteer at) who after I (out of no where starting tell her our story and started crying while doing so) said to me that I am so courageous. I cried of course when I heard those words too. And so I need to pass on that very powerful word to you. YOU are courageous. Laura, you write with grace and tell your truth. Thank you for being on this earth. I connected to your story even though mine is very different. With love, Melisa

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]]> Comment on WELCOME 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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]]> Comment on A NEW STORY- Laura B by LBL http://dontloseheart.org/stories/a-new-story-lbl/comment-page-1/#comment-117415 LBL Thu, 17 May 2012 20:31:47 +0000 http://dontloseheart.org/?page_id=3745#comment-117415 Thanks again, Char! Laura Thanks again, Char!

Laura

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]]> Comment on A NEW STORY- Laura B by Char http://dontloseheart.org/stories/a-new-story-lbl/comment-page-1/#comment-117408 Char Thu, 17 May 2012 20:04:57 +0000 http://dontloseheart.org/?page_id=3745#comment-117408 Hi Linda B /"LBL" I am sorry to hear your son is not well, and hoping by the time you read this he is feeling better. I am trying hard to find the words for a mother, wife, woman,in your situation. You have hold of a situation that is slippery at best. How <em>do</em> you foster his independence and mother/mentor at the same time? I just think you have done an amazing job, faced with so much adversity. I am sorry but your comments always seem to leave me speechless, (some may say that is a good thing). I have no advice, just continue to be the amazing mother, wife, mentor you are. oh and one more thing: <em>…' I don’t mind that people are curious – I think that our society supports an increasing indifference to one another and that bugs me. But, if figure if I feel judged, I’ve been judged, and that bugs me too. </em> I think this sums it all up for me... thank you! ~Char Hi Linda B /”LBL”
I am sorry to hear your son is not well, and hoping by the time you read this he is feeling better. I am trying hard to find the words for a mother, wife, woman,in your situation. You have hold of a situation that is slippery at best. How do you foster his independence and mother/mentor at the same time? I just think you have done an amazing job, faced with so much adversity. I am sorry but your comments always seem to leave me speechless, (some may say that is a good thing). I have no advice, just continue to be the amazing mother, wife, mentor you are.
oh and one more thing:
…’ I don’t mind that people are curious – I think that our society supports an increasing indifference to one another and that bugs me. But, if figure if I feel judged, I’ve been judged, and that bugs me too.
I think this sums it all up for me… thank you!
~Char

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]]> Comment on OUR STORIES by Char http://dontloseheart.org/stories/comment-page-1/#comment-117404 Char Thu, 17 May 2012 19:48:33 +0000 http://dontloseheart.org/?page_id=635#comment-117404 Laura, So thrilled to read your post, great to know you had a nice talk. We can only live day to day, so for your lovely day, I am happy. Wishing you and your daughter tons more. ~Char Laura,
So thrilled to read your post, great to know you had a nice talk. We can only live day to day, so for your lovely day, I am happy. Wishing you and your daughter tons more.
~Char

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]]> Comment on WELCOME 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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]]> Comment on WELCOME 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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]]> Comment on OUR STORIES by Laura http://dontloseheart.org/stories/comment-page-1/#comment-117030 Laura Wed, 16 May 2012 05:10:31 +0000 http://dontloseheart.org/?page_id=635#comment-117030 Well, I thought about it and decided that my daughter had enough time to do whatever she needed to do alone and called her this evening. She answered the phone and we talked until her battery died. All is well (for the moment). She does get spells where she doesn't want to talk to anyone, (I'm that way, too) but I guess the time got away with her because she didn't realize it had been so long. We had a wonderful visit. Nice thoughts to go to sleep by.... Laura Well, I thought about it and decided that my daughter had enough time to do whatever she needed to do alone and called her this evening. She answered the phone and we talked until her battery died. All is well (for the moment). She does get spells where she doesn’t want to talk to anyone, (I’m that way, too) but I guess the time got away with her because she didn’t realize it had been so long. We had a wonderful visit. Nice thoughts to go to sleep by….
Laura

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]]> Comment on A NEW STORY- Laura B by LBL http://dontloseheart.org/stories/a-new-story-lbl/comment-page-1/#comment-116751 LBL Mon, 14 May 2012 23:31:48 +0000 http://dontloseheart.org/?page_id=3745#comment-116751 Hello, everyone, and thanks for the warm welcome. I'm so glad to see that my comment was posted - I'd been looking for it on a different page but have now, obviously, found it, so yeah! I'll get the mechanics of this site figured out eventually. Thanks for your sweet comments, Char. It has been difficult to find people who can understand my family's specific challenges. My son's illness doesn't affect his physical appearance so I'm sure our interactions sometimes seem curious to others. For instance, we were in the grocery store once and my son asked permission to use his cell phone, which was in my purse. I fished it out and gave it to him. While this was happening I saw the cashier glance at me and noticed that she clearly found it strange that my adult son was asking permission to use his own cell phone. What she didn't know was that he'd asked me to take his phone and keep it safe - he'd thrown five previous phones at the wall in fits of rage and was concerned about breaking this one, which he couldn't afford to replace. As you said, "there but for the grace of God go I..." I don't mind that people are curious - I think that our society supports an increasing indifference to one another and that bugs me. But, if figure if I feel judged, I've been judged, and that bugs me too. Thank you too, Laura. I don't feel so amazing (I'm guessing none of us do, day to day) but I have come to respect my ability to survive and thrive. I wrote my first post after a long, tough day. I'm naturally inclined to optimism and I'm happy to say that my sense of hopefulness has returned. Even though there is no "magic pill" (nice idea, Jean!) there are bright spots and I'm working harder to appreciate them when they occur. Jean, I rail against my family's advice-giving culture, too. :) Thanks for your insightful remarks. It is hard for me to give myself a break sometimes. I think a piece of the reason is that I don't want my story to deter anyone from fostering or adopting a child who needs a home. I meet lots of foster and adoptive parents in my work and the reality is that there are many families who can relate to my experience. (I just read a new and startling statistic - as many as 80-90% of kids in the foster care system have been exposed to alcohol in utero. 80-90%!) The road to wellness is a long one for most of our kids and you're right, I was completely oblivious to that when I adopted. (And, as you point out, so was my husband when he came into my life. Bless his heart.) Still, and despite all the heartache, I'm happy I chose to do it... though I'd never do it again. I know it's not my responsibility to be an ambassador for adoption, but I feel that way just the same. Thank you for your comments too, Sue. My husband and I have decided, as you suggested, that our home wouldn't be the best place for T. We love him but feel like we can support him more effectively if he lives somewhere else. The question right now is where? T. has an advocate and does receive Medicaid but, as a practical matter, it doesn't mean much. Our state is in the process of slashing services to what's called the SMI (Severely Mentally Ill) class, and specifically those recipients who have no dependents. T. is already experiencing a reduction in basic health care services (lots of different health conditions are associated with Fetal Alcohol Syndrome - if brain development is compromised other systems don't get the support they need to develop properly either) and mental health services are next to go. Our public systems fail our most vulnerable citizens in ways that boggle the mind. I could go on and on and on and on... So, right now, today, we're coping with a really sick kid. He has asthma which often leads to bronchitis and as of this morning's doctor visit, pneumonia. He should be resting in the group home but the placement is often distracting and unsettling for him, so he leaves, even when he's sick. We talked to him about recuperating at our house but he says he doesn't want to "burden us" - he's constantly struggling with knowing when and how to ask for him. He's trying really hard to be independent, which is admirable, but it also means that he sometimes make an already bad situation even worse. So, how to foster independence and mother and mentor at the same time? That's my challenge today (and let's face it, every day). Thanks for listening, ladies, and thanks again for your supportive comments. I do feel welcome here and I will be back. Hello, everyone, and thanks for the warm welcome. I’m so glad to see that my comment was posted – I’d been looking for it on a different page but have now, obviously, found it, so yeah! I’ll get the mechanics of this site figured out eventually.

Thanks for your sweet comments, Char. It has been difficult to find people who can understand my family’s specific challenges. My son’s illness doesn’t affect his physical appearance so I’m sure our interactions sometimes seem curious to others. For instance, we were in the grocery store once and my son asked permission to use his cell phone, which was in my purse. I fished it out and gave it to him. While this was happening I saw the cashier glance at me and noticed that she clearly found it strange that my adult son was asking permission to use his own cell phone. What she didn’t know was that he’d asked me to take his phone and keep it safe – he’d thrown five previous phones at the wall in fits of rage and was concerned about breaking this one, which he couldn’t afford to replace. As you said, “there but for the grace of God go I…” I don’t mind that people are curious – I think that our society supports an increasing indifference to one another and that bugs me. But, if figure if I feel judged, I’ve been judged, and that bugs me too.

Thank you too, Laura. I don’t feel so amazing (I’m guessing none of us do, day to day) but I have come to respect my ability to survive and thrive. I wrote my first post after a long, tough day. I’m naturally inclined to optimism and I’m happy to say that my sense of hopefulness has returned. Even though there is no “magic pill” (nice idea, Jean!) there are bright spots and I’m working harder to appreciate them when they occur.

Jean, I rail against my family’s advice-giving culture, too. :) Thanks for your insightful remarks. It is hard for me to give myself a break sometimes. I think a piece of the reason is that I don’t want my story to deter anyone from fostering or adopting a child who needs a home. I meet lots of foster and adoptive parents in my work and the reality is that there are many families who can relate to my experience. (I just read a new and startling statistic – as many as 80-90% of kids in the foster care system have been exposed to alcohol in utero. 80-90%!) The road to wellness is a long one for most of our kids and you’re right, I was completely oblivious to that when I adopted. (And, as you point out, so was my husband when he came into my life. Bless his heart.) Still, and despite all the heartache, I’m happy I chose to do it… though I’d never do it again. I know it’s not my responsibility to be an ambassador for adoption, but I feel that way just the same.

Thank you for your comments too, Sue. My husband and I have decided, as you suggested, that our home wouldn’t be the best place for T. We love him but feel like we can support him more effectively if he lives somewhere else. The question right now is where? T. has an advocate and does receive Medicaid but, as a practical matter, it doesn’t mean much. Our state is in the process of slashing services to what’s called the SMI (Severely Mentally Ill) class, and specifically those recipients who have no dependents. T. is already experiencing a reduction in basic health care services (lots of different health conditions are associated with Fetal Alcohol Syndrome – if brain development is compromised other systems don’t get the support they need to develop properly either) and mental health services are next to go. Our public systems fail our most vulnerable citizens in ways that boggle the mind. I could go on and on and on and on…

So, right now, today, we’re coping with a really sick kid. He has asthma which often leads to bronchitis and as of this morning’s doctor visit, pneumonia. He should be resting in the group home but the placement is often distracting and unsettling for him, so he leaves, even when he’s sick. We talked to him about recuperating at our house but he says he doesn’t want to “burden us” – he’s constantly struggling with knowing when and how to ask for him. He’s trying really hard to be independent, which is admirable, but it also means that he sometimes make an already bad situation even worse. So, how to foster independence and mother and mentor at the same time? That’s my challenge today (and let’s face it, every day).

Thanks for listening, ladies, and thanks again for your supportive comments. I do feel welcome here and I will be back.

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]]> Comment on OUR STORIES by Laura http://dontloseheart.org/stories/comment-page-1/#comment-116667 Laura Mon, 14 May 2012 15:46:59 +0000 http://dontloseheart.org/?page_id=635#comment-116667 Char, I am sorry that I didn't make myself clear. The hardest part of what is going on with my daughter is that there IS no anger. We had no disagreement. I'm just not what she needs right now, and while it really hurts me as her mother, I can only sit by helplessly while she tries to pull herself together. She is having financial difficulties and her father could always convince her that tomorrow will be better. I can say the same things, but she will never hear that encouragement from him again and is having a hard time handling it. I wish I could help her, but I am in no better shape financially. I am trying to get a job while fending off foreclosure on my house. We do have some financial help, but getting a job when you've been off the grid for 10 years is a real challenge! I also have some contacts who live near my daughter and would let me know if anything was amiss so, at least I know she is physically okay. A mother's work is never done.... Laura Char,
I am sorry that I didn’t make myself clear. The hardest part of what is going on with my daughter is that there IS no anger. We had no disagreement. I’m just not what she needs right now, and while it really hurts me as her mother, I can only sit by helplessly while she tries to pull herself together. She is having financial difficulties and her father could always convince her that tomorrow will be better. I can say the same things, but she will never hear that encouragement from him again and is having a hard time handling it.

I wish I could help her, but I am in no better shape financially. I am trying to get a job while fending off foreclosure on my house. We do have some financial help, but getting a job when you’ve been off the grid for 10 years is a real challenge!

I also have some contacts who live near my daughter and would let me know if anything was amiss so, at least I know she is physically okay. A mother’s work is never done….
Laura

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