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 Best guess on progression 
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Joined: Fri Sep 08, 2006 2:11 am
Posts: 6
Location: Texas
Post Best guess on progression
My mother was diagnosed with LBD in September. She is 88. Three years ago she was diagnosed with AD, and then 1 and a half years ago, she was diagnosed with Normal Pressure Hydrocephalus. Last month she broke her femur at the hip. We want to provide her with the greatest level of comfort, but we also wish to avoid spending all her money before she passes away. Based on your experience, approximately how many months can we reasonably hope for my mother? Lately she has been having UTI's, and we have her in rehab for the broken leg.


Sat Nov 18, 2006 10:44 pm
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Joined: Thu Sep 07, 2006 7:40 pm
Posts: 64
Location: Chelmsford, MA
Post Hardtime
Hello,
I am sorry to hear that your Mother is sick; I hope she is recuperating well in the rehab.
I was wondering if the same doctor did the diagnosing? Did they put in a shunt for her NPH? How did they determine it is LB?
I think asking how much time your Mom has is asking way too much of anyone on this planet. That is my personal opinion, maybe someone else wants to go out on a limb with that question.
I hope that you will take the time to educate yourself in the world of lewy body disease as it is not like just having AZ, Parkinsons or NPH alone. It is definitely in a league of its own when it involves lewy B. :cry:
My best,
diane

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Caretaker Daughter of 79 YO MOM with Vascular Dementia & AD


Sun Nov 19, 2006 1:44 am
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--------------------------------------------------------------------------------

My mother was diagnosed with LBD in September. She is 88. Three years ago she was diagnosed with AD, and then 1 and a half years ago, she was diagnosed with Normal Pressure Hydrocephalus. Last month she broke her femur at the hip. We want to provide her with the greatest level of comfort, but we also wish to avoid spending all her money before she passes away. Based on your experience, approximately how many months can we reasonably hope for my mother? Lately she has been having UTI's, and we have her in rehab for the broken leg.


Dear Hardtime,
If you have done any research on LBD by now you probably know that the previous DX's were LBD all along , the medical profession just didn't hit on LBD at the time, this is not uncommon as we all know LBD is hard to DX.
I think bringing a question like how long she is going to live, so her money isn't spent is something anyone here doesn't want to answer, I pray it isn't meant the way it is written .
When someone with LBD goes through a trauma like your Mother has/is going through it hard to say if she will swing back to where she was prior to her fall and these UTI's. LBD Fluctuates so much and perhaps your Mother has just given up
My advice is to contact Hospice in your area and see if they will take her on and they will be brutally honest as far as time if possible.
I do want you to Know I would have spent every dime I had to keep my husband alive just a little while longer. :cry:


Sun Nov 19, 2006 8:46 am
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Dear Hardtime,
I really never meant to add to your worries with your Mother, I am sure you are going through a great deal knowing LBD is so uncertain for many, as been pointed out to me perhaps I just read into your post incorrectly and what you are meaning is your are hoping her Money holds out for her care and that I certainly do understand, My Mom recently passed away a few months ago and money issues were a big concern for me after the loss of my Husband. So if I steped on toes here with you I am sorry it was not intended that I assure you!


Sun Nov 19, 2006 9:41 am

Joined: Fri Sep 08, 2006 2:11 am
Posts: 6
Location: Texas
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Irene, not to worry. I did not word my inquiry very well. My wife and I spent nearly $40,000 on mother's care in an AZ facility before bringing her home to live with us when she got the NPH diagnosis. Mother has a savings account which she obesses about and which is one reason for her disqualification from Medicaid. The other reason is a small pension which takes her a few dollars over the limit. Before her recent accident, she was able to assist my wife when transferring to and from the bad and toilette; now, she can't do that. Perhaps after some time in rehab, we get back to status quo, but I am having to plan for all eventualities. Mother has reached the point that she sometimes does not recognize me, but she always wants to know how her money is holding up once she knows who I am. I don't want or need her money; I am just trying to plan for her greatest level of comfort for the future without risking assuming a burden which would be unfair to my wife as I am facing mandatory retirement. The current income plus the money in her savings would be just enough to provide care in a nice local facility for about 22 months. My wife has provided great care for my mother while receiving torrents of abuse from my mother even prior to the onset of dementia. Mother has always been a difficult, critical person. My wife and I are the only people who will take care of Mother. My sister does not want to deal with my mother because of the years of negativity and abuse. My mother is still angry about things that happened eighty years ago. Thirty-five years ago, my father tried to get my mother to get therapy for her anger, but she disliked the therapist and would not try another one. Thirty years ago, I tried to get her to see a therapist and she did not speak to me for six months. At the rehab center my mother has already become famous for spitting at the staff and physically abusing them. I am afraid that her conduct places her at risk for neglect or even abuse by the staff. We are willing to bring her back home, but it is very difficult to find people to work with my wife in providing care because my mother is so abusive. Even if we spend down Mother's savings account without her knowledge, her pension is just big enough to disqualify her for Medicaid and much too small to allow her to be in a facility as a private pay patient. I would be happy to assign all her savings and future income if I could obtain a guarantee that she could stay as long as she lives. I am just trying to do the best I can, both long term and short term, for my mother who finds herself in difficult circumstances.


Sun Nov 19, 2006 11:27 am
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Dear Hardtime,
I do NOW understand what you were trying to say altho my Mother didn't have this type of disease I went through simular situation with my Mom she had been in assisted living for 5 yrs and was private pay, she had previously lived with us and my family but as my Husbands Lewy Body advanced it became hard to keep her in the home as his axiety level was at its worst at the time and this is before we knew my Husband had LBD, so I had to do what was best for all concerned and the 5 yrs my Mother was in assisted living she just spent never gave a care about the future, there were other siblings that had written her off yrs before about 1 yr before her death I had to apply for some assistance through the state and the requirment being Mental or Physical need for assited living well the 1st time the interviewer came after weeks of me rehearsing her she jumped out of the chair faster than you or would have. that you , so the outcome was she didn't quailfy, I remember being so angry that day knowing this was all going to fall on my shoulders, I again had to reapply months later because THE MONEY SIUTAION WAS NOT GETTING ANY BETTER and she just didn't get it.
In Oct of 05 my Husband passed , would you believed the very 2 last weeks of his life she somehow managed to fall and fracture both hips but only one was bad enough to put 2 pins in, I now had to move her 60 miles south of where we lived because just 4 weeks prior to my husbands death I had moved my family to be near my children to get some help with my Husband never dreaming he would pass in such a short time.So when I moved her the state help I did have in place for her became void because it really was through the county, I had to start all over again medicare only paid the first 21 days in a rehab and I applied yet again for her she was placed in long term care and then did well I then moved her to assisted living, believing this was the best thing for her, she lived there not even a month when she became ill with end stage heart problems, spent 2 weeks in a hospital which I still have them calling me for bills and when they told me there was nothing more they could do I placed her in Hospice care and there she lived only 8 days.
Such a long story I guess we all have one ! But I would like to again encourage you to get in touch with Hospice they really can give relief in more area's other than care.
I wish you and your family well!


Sun Nov 19, 2006 12:03 pm

Joined: Thu Sep 07, 2006 7:40 pm
Posts: 64
Location: Chelmsford, MA
Post Hardtime
Hello,
I guess one of the biggest problems with posting is that we don't get to tell the entire story and sometimes it may sound one way when indeed it is quite the opposite.
Your Mother is very lucky to have you and your wife. You have been through so much and my heart goes out to you. Thank you for sharing, I know this is a very tough time.
I'm sure Irene's idea of contacting Hospice would probably be very helpful. I know that a lot of people get great help there.
My best,
Diane

_________________
Caretaker Daughter of 79 YO MOM with Vascular Dementia & AD


Sun Nov 19, 2006 11:53 pm
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Diane,
You are so right, we all need to read and re-read sometimes a post doesn't come across the way it is meant, even more so in forums like this because people are so stressed to begin with having to deal with the illness and just wanting answers to comments, I know I have learned my lesson, for me sometimes I think I might be to close to the subject and need to step back and look very closely. :oops:


Mon Nov 20, 2006 9:38 am
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