Guest guest Posted October 20, 2011 Report Share Posted October 20, 2011 Hello to everyone,  My name is Sharon Stalnaker and I have been on this site a little over a year. My Mom has Lewy Body Dementia and fortunately we did not have to go through some of the worst of the disease. My beautiful and wonderful mother passed away on October 12, 2011. Actually what took her was acute respiratory failure due to congestive heart failure which started after she was diagnosed. She is at peace now. To: LBDcaregivers Sent: Thursday, October 20, 2011 11:14 AM Subject: Re: Hospice  > Mom has been on Hospice for just over a year. Yesterday the Social Worker > called and told us they are dropping her November 1. Now what are we to do? > Can they do that? > Yes they can, and, unfortunately, under the rules for Medicare reimbursement, they are probably required to drop her unless there's an obvious and recent decline. I went through the same thing a bit over year ago with my Dad, and I was completely terrified. We had a very caring hospice group and they didn't want to decertify Dad, but if they weren't going to be paid .... Both the regular nurse and the doctor we worked with told me very carefully that I should call them if anything changed. Carefully, because they doubted my ability to absorb information while trying to imagine how I would deal with his next health problem. Dad was by then unable to communicate at all and unable or unwilling to assist in standing, walking, etc. About four months later he had a seizure, from which he recovered on his own after a few minutes. He was recertified for hospice that afternoon. Any health problem your mother develops will probably allow hospice to recertify her. Best regards, Ann Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 21, 2011 Report Share Posted October 21, 2011 Sharon, My condolences on the passing of your mom. Sending you and yours much strength. Courage From: sharon stalnaker Sent: Thursday, October 20, 2011 9:59 PM To: LBDcaregivers Subject: My Mom Hello to everyone, My name is Sharon Stalnaker and I have been on this site a little over a year. My Mom has Lewy Body Dementia and fortunately we did not have to go through some of the worst of the disease. My beautiful and wonderful mother passed away on October 12, 2011. Actually what took her was acute respiratory failure due to congestive heart failure which started after she was diagnosed. She is at peace now. From: Ann on <mailto:aharrison%40ibphoenix.com> To: mailto:LBDcaregivers%40yahoogroups.com Sent: Thursday, October 20, 2011 11:14 AM Subject: Re: Hospice On Thu, Oct 20, 2011 at 1:33 AM, ps4me04 <mailto:sher4me%40tds.net> wrote: > Mom has been on Hospice for just over a year. Yesterday the Social Worker > called and told us they are dropping her November 1. Now what are we to do? > Can they do that? > Yes they can, and, unfortunately, under the rules for Medicare reimbursement, they are probably required to drop her unless there's an obvious and recent decline. I went through the same thing a bit over year ago with my Dad, and I was completely terrified. We had a very caring hospice group and they didn't want to decertify Dad, but if they weren't going to be paid .... Both the regular nurse and the doctor we worked with told me very carefully that I should call them if anything changed. Carefully, because they doubted my ability to absorb information while trying to imagine how I would deal with his next health problem. Dad was by then unable to communicate at all and unable or unwilling to assist in standing, walking, etc. About four months later he had a seizure, from which he recovered on his own after a few minutes. He was recertified for hospice that afternoon. Any health problem your mother develops will probably allow hospice to recertify her. Best regards, Ann Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 21, 2011 Report Share Posted October 21, 2011 Hi Sharon I send out my deepest sympathy on the passing of your mom! Never easy to lose a mother ! I feel your grief and hope you will heal while remembering your mom in better times ! God bless ! Judy R. Strauss LMSW PhD Lead Faculty University of Phoenix Jersey City Campus 100 Town Square Place |Jersey City, NJ 07310 Cell- Email- Jrstr@... > Hello to everyone, > My name is Sharon Stalnaker and I have been on this site a little over a year. My Mom has Lewy Body Dementia and fortunately we did not have to go through some of the worst of the disease. My beautiful and wonderful mother passed away on October 12, 2011. Actually what took her was acute respiratory failure due to congestive heart failure which started after she was diagnosed. She is at peace now. > > > To: LBDcaregivers > Sent: Thursday, October 20, 2011 11:14 AM > Subject: Re: Hospice > > > > > > Mom has been on Hospice for just over a year. Yesterday the Social Worker > > called and told us they are dropping her November 1. Now what are we to do? > > Can they do that? > > > > Yes they can, and, unfortunately, under the rules for Medicare > reimbursement, they are probably required to drop her unless there's an > obvious and recent decline. I went through the same thing a bit over year > ago with my Dad, and I was completely terrified. We had a very caring > hospice group and they didn't want to decertify Dad, but if they weren't > going to be paid .... Both the regular nurse and the doctor we worked with > told me very carefully that I should call them if anything changed. > Carefully, because they doubted my ability to absorb information while > trying to imagine how I would deal with his next health problem. Dad was > by then unable to communicate at all and unable or unwilling to assist in > standing, walking, etc. About four months later he had a seizure, from > which he recovered on his own after a few minutes. He was recertified for > hospice that afternoon. > > Any health problem your mother develops will probably allow hospice to > recertify her. > > Best regards, > > Ann > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 21, 2011 Report Share Posted October 21, 2011 Dear Sharon, My deep and very sincere condolences. May you have good memories to carry you through the difficult times. Helene in NY > > > Mom has been on Hospice for just over a year. Yesterday the Social Worker > > called and told us they are dropping her November 1. Now what are we to do? > > Can they do that? > > > > Yes they can, and, unfortunately, under the rules for Medicare > reimbursement, they are probably required to drop her unless there's an > obvious and recent decline. I went through the same thing a bit over year > ago with my Dad, and I was completely terrified. We had a very caring > hospice group and they didn't want to decertify Dad, but if they weren't > going to be paid .... Both the regular nurse and the doctor we worked with > told me very carefully that I should call them if anything changed. > Carefully, because they doubted my ability to absorb information while > trying to imagine how I would deal with his next health problem. Dad was > by then unable to communicate at all and unable or unwilling to assist in > standing, walking, etc. About four months later he had a seizure, from > which he recovered on his own after a few minutes. He was recertified for > hospice that afternoon. > > Any health problem your mother develops will probably allow hospice to > recertify her. > > Best regards, > > Ann > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 21, 2011 Report Share Posted October 21, 2011 Sharon, So sorry to hear of the loss of your Mom. I still miss mine, 3 years now-seems like yesterday. Glad she didn't have to suffer needlessly for any longer. Our prayers go out to you.    > > > Mom has been on Hospice for just over a year. Yesterday the Social Worker > > called and told us they are dropping her November 1. Now what are we to do? > > Can they do that? > > > > Yes they can, and, unfortunately, under the rules for Medicare > reimbursement, they are probably required to drop her unless there's an > obvious and recent decline. I went through the same thing a bit over year > ago with my Dad, and I was completely terrified. We had a very caring > hospice group and they didn't want to decertify Dad, but if they weren't > going to be paid .... Both the regular nurse and the doctor we worked with > told me very carefully that I should call them if anything changed. > Carefully, because they doubted my ability to absorb information while > trying to imagine how I would deal with his next health problem. Dad was > by then unable to communicate at all and unable or unwilling to assist in > standing, walking, etc. About four months later he had a seizure, from > which he recovered on his own after a few minutes. He was recertified for > hospice that afternoon. > > Any health problem your mother develops will probably allow hospice to > recertify her. > > Best regards, > > Ann > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 21, 2011 Report Share Posted October 21, 2011 Sharon, Condolences to you and your family. I am glad your Mom is at peace. Now you can grieve and take care of yourself and heal. Hugs, Donna R Re: Hospice  On Thu, Oct 20, 2011 at 1:33 AM, ps4me04 < sher4me@... > wrote: > Mom has been on Hospice for just over a year. Yesterday the Social Worker > called and told us they are dropping her November 1. Now what are we to do? > Can they do that? > Yes they can, and, unfortunately, under the rules for Medicare reimbursement, they are probably required to drop her unless there's an obvious and recent decline. I went through the same thing a bit over year ago with my Dad, and I was completely terrified. We had a very caring hospice group and they didn't want to decertify Dad, but if they weren't going to be paid .... Both the regular nurse and the doctor we worked with told me very carefully that I should call them if anything changed. Carefully, because they doubted my ability to absorb information while trying to imagine how I would deal with his next health problem. Dad was by then unable to communicate at all and unable or unwilling to assist in standing, walking, etc. About four months later he had a seizure, from which he recovered on his own after a few minutes. He was recertified for hospice that afternoon. Any health problem your mother develops will probably allow hospice to recertify her. Best regards, Ann Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 21, 2011 Report Share Posted October 21, 2011 Sharon, I am so sorry for your loss. Hugs to you and your family, Nan > > > Mom has been on Hospice for just over a year. Yesterday the Social Worker > > called and told us they are dropping her November 1. Now what are we to do? > > Can they do that? > > > > Yes they can, and, unfortunately, under the rules for Medicare > reimbursement, they are probably required to drop her unless there's an > obvious and recent decline. I went through the same thing a bit over year > ago with my Dad, and I was completely terrified. We had a very caring > hospice group and they didn't want to decertify Dad, but if they weren't > going to be paid .... Both the regular nurse and the doctor we worked with > told me very carefully that I should call them if anything changed. > Carefully, because they doubted my ability to absorb information while > trying to imagine how I would deal with his next health problem. Dad was > by then unable to communicate at all and unable or unwilling to assist in > standing, walking, etc. About four months later he had a seizure, from > which he recovered on his own after a few minutes. He was recertified for > hospice that afternoon. > > Any health problem your mother develops will probably allow hospice to > recertify her. > > Best regards, > > Ann > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 21, 2011 Report Share Posted October 21, 2011 Sharon, I am sorry your mom is now gone from you. You are so right to be relieved she died of another cause without having to continue the LBD journey to the end. I hope her end was peaceful. > > > Mom has been on Hospice for just over a year. Yesterday the Social Worker > > called and told us they are dropping her November 1. Now what are we to do? > > Can they do that? > > > > Yes they can, and, unfortunately, under the rules for Medicare > reimbursement, they are probably required to drop her unless there's an > obvious and recent decline. I went through the same thing a bit over year > ago with my Dad, and I was completely terrified. We had a very caring > hospice group and they didn't want to decertify Dad, but if they weren't > going to be paid .... Both the regular nurse and the doctor we worked with > told me very carefully that I should call them if anything changed. > Carefully, because they doubted my ability to absorb information while > trying to imagine how I would deal with his next health problem. Dad was > by then unable to communicate at all and unable or unwilling to assist in > standing, walking, etc. About four months later he had a seizure, from > which he recovered on his own after a few minutes. He was recertified for > hospice that afternoon. > > Any health problem your mother develops will probably allow hospice to > recertify her. > > Best regards, > > Ann > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 21, 2011 Report Share Posted October 21, 2011 Dear Sharon, My deepest condolences. Your mommy is free and whole and happy again; hold on to that and the sweet memories to get through the rough days. May God give you peace and strength. Heartfelt hugs, from NYC Daughter of Celestino (Tino) Suarez Misdiagnosed for years. Diagnosed with LBD March 2009, but we now know he's had it for at least 4-5 years. God called him home on October 27, 2009. Rest in peace, Daddy. (January 29, 1930 - October 27, 2009) > > > Mom has been on Hospice for just over a year. Yesterday the Social Worker > > called and told us they are dropping her November 1. Now what are we to do? > > Can they do that? > > > > Yes they can, and, unfortunately, under the rules for Medicare > reimbursement, they are probably required to drop her unless there's an > obvious and recent decline. I went through the same thing a bit over year > ago with my Dad, and I was completely terrified. We had a very caring > hospice group and they didn't want to decertify Dad, but if they weren't > going to be paid .... Both the regular nurse and the doctor we worked with > told me very carefully that I should call them if anything changed. > Carefully, because they doubted my ability to absorb information while > trying to imagine how I would deal with his next health problem. Dad was > by then unable to communicate at all and unable or unwilling to assist in > standing, walking, etc. About four months later he had a seizure, from > which he recovered on his own after a few minutes. He was recertified for > hospice that afternoon. > > Any health problem your mother develops will probably allow hospice to > recertify her. > > Best regards, > > Ann > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 22, 2011 Report Share Posted October 22, 2011 Sharon, My condolences on the loss of your mother. I almost wish my Mom could avoid the steady decline we read about on this list. She is in a better place. Barbara ________________________________ To: " LBDcaregivers " <LBDcaregivers > Sent: Thu, October 20, 2011 9:59:43 PM Subject: My Mom Hello to everyone, My name is Sharon Stalnaker and I have been on this site a little over a year. My Mom has Lewy Body Dementia and fortunately we did not have to go through some of the worst of the disease. My beautiful and wonderful mother passed away on October 12, 2011. Actually what took her was acute respiratory failure due to congestive heart failure which started after she was diagnosed. She is at peace now. To: LBDcaregivers Sent: Thursday, October 20, 2011 11:14 AM Subject: Re: Hospice > Mom has been on Hospice for just over a year. Yesterday the Social Worker > called and told us they are dropping her November 1. Now what are we to do? > Can they do that? > Yes they can, and, unfortunately, under the rules for Medicare reimbursement, they are probably required to drop her unless there's an obvious and recent decline. I went through the same thing a bit over year ago with my Dad, and I was completely terrified. We had a very caring hospice group and they didn't want to decertify Dad, but if they weren't going to be paid .... Both the regular nurse and the doctor we worked with told me very carefully that I should call them if anything changed. Carefully, because they doubted my ability to absorb information while trying to imagine how I would deal with his next health problem. Dad was by then unable to communicate at all and unable or unwilling to assist in standing, walking, etc. About four months later he had a seizure, from which he recovered on his own after a few minutes. He was recertified for hospice that afternoon. Any health problem your mother develops will probably allow hospice to recertify her. Best regards, Ann Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 22, 2011 Report Share Posted October 22, 2011 Sharon: Sorry that you and your mother had to suffer LBD at all, but God Blessed all of you with, perhaps, an easier path. When you know what the end will be, it is a blessing to end the suffering. Soon you will have good memories and smiles again. Leona: Caregiver for husband Ray, age 68, diagnosed 2/04 with Parkinson's Disease. Changed doctors, diagnosed 6/06 with LBD. Almost continual downhill slide no matter what drugs we try. 5/2/08 Ray was placed in Sunrise Nursing Home in Oswego, NY, 1 hour from home. So far, so good! Hardest thing I have ever done in my life, however. 3/19/09 transferred to Samaritan Keep NH in Watertown, NY closer to home. He passed peacefully at 5:18 am on April 14, 2009. I am handling it OK. 'Love is not finding someone to live with; it's finding someone you don't want to live without.' Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 25, 2011 Report Share Posted October 25, 2011 Dear Sharon, I'm so very sorry to hear about your loss. My mother also escaped some of the worst of this disease, when she developed sepsis following a stroke. But the dementia remains part of their final journey. I do hope you can begin to find peace, now that your mother has found it. Be gentle with yourself. Sincerely, Hosey Re: Hospice  On Thu, Oct 20, 2011 at 1:33 AM, ps4me04 < sher4me@... > wrote: > Mom has been on Hospice for just over a year. Yesterday the Social Worker > called and told us they are dropping her November 1. Now what are we to do? > Can they do that? > Yes they can, and, unfortunately, under the rules for Medicare reimbursement, they are probably required to drop her unless there's an obvious and recent decline. I went through the same thing a bit over year ago with my Dad, and I was completely terrified. We had a very caring hospice group and they didn't want to decertify Dad, but if they weren't going to be paid .... Both the regular nurse and the doctor we worked with told me very carefully that I should call them if anything changed. Carefully, because they doubted my ability to absorb information while trying to imagine how I would deal with his next health problem. Dad was by then unable to communicate at all and unable or unwilling to assist in standing, walking, etc. About four months later he had a seizure, from which he recovered on his own after a few minutes. He was recertified for hospice that afternoon. Any health problem your mother develops will probably allow hospice to recertify her. Best regards, Ann Quote Link to comment Share on other sites More sharing options...
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