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 What do you do when the doctors give up? 
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Joined: Sun Dec 03, 2006 12:51 am
Posts: 31
Post What do you do when the doctors give up?
My mother is in probably the second to last stage of LBD. She has no control over her body functions any longer and can barely stand or walk. The neurologist removed all medications because he felt they were causing more harm than helping her. Since the removal of the medications she has declined drastically. She is very rigid and is either rambling on without making any sense at all or in a daze. We are now second guessing ourselves and the doctor again and wondering if we are doing everything for her that we can. We asked the doctor to refer us to another neurologist for a second opinion. he basically said sure but not to get our hopes up, this was the disease and nothing could be done for her. It has just happened so fast. Although she was diagnosed about 4 years ago, the progression was really slow until about six months ago. Has anyone experienced this quickly of a progression with the doctors giving up hope?


Tue Jan 09, 2007 10:00 pm
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Joined: Sat Aug 19, 2006 5:01 pm
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cmiller,
I can't really address the doctors giving up, but I can address a rapid decline. My Mom is on 1 med for depression, 2 for Alzheimers, and one as needed for anxiety and agitation. And despite this, she has had a very rapid decline in the last 9 months. So, I'm not sure meds are the answer. My Dad passed away in March and I think that has added alot of stress on top of the disease for my Mom. I have heard that any severe stress (hospitalization, move to new living situation,etc) can cause a rapid decline. The interesting thing is, some families say that they "bounce back". I have seen this in my Mom only once, when she was sick with a bladder infection and I thought she was dying, but the antibiotics worked and she's doing okay. I hope you can get some answers from another physician. Does her current doc understand that all you want is improved quality of life for your Mom? Maybe he thinks you are looking for a cure. Who knows with physicians. Anyway, good luck, and be strong in your search for good care for her.
Sallyann


Wed Jan 10, 2007 2:53 am
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Joined: Sun Dec 03, 2006 12:51 am
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Thank you for your response. We have seen a lot of ups and downs in Mom but it seems like it has been more down days than up days. This has been really hard on my Dad. My Dad still works and it became just impossible for him to care for her, even with day sitters. We admitted Mom into a facility a few months ago and have a sitter with her during the day. Even the nursing home staff has noticed how fast she is declining. I guess it could be as you mentioned a change in her environment. Before the neurologist removed all of the brain stimulating meds, she was hallucinating, paranoid, aggressive, had crying episodes, wandered day and night, would go days and nights without sleeping but would cry because she was so tired. After removing the meds, all of the negatives have disappeared but she's so weak and stiff. Both her internist and neurologist have said there is no in between - it's one way or the other. This is the cruelest disease - cruel on the patient but even more so on the family. One day you have them and the next few days you think there is no way they can live another month, then they come back again. It is like a roller coaster and no one, regardless of how close they are to you, can possibly understand unless they have been through it. Thank you for listening and responding.

Cindy


Wed Jan 10, 2007 2:48 pm
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Hi Again Cindy,
I think from my own experience the decline is rather slow earlier on and by the time the latter stages come along tbey are more pronounced. As far as the meds it really is hard to say, there really are none that actively help LBD just kind of hit and miss, some work others don't and each person is different, even the sypthoms can vary greatly. Some have more Cognitive issues others have more Physical.One thing I am sure of is everything we decide is a trade off for something else, you mention your Mom was taken off her meds and she is now stiff but she is no longer haslucinations and the aggressive behavior has been curbed, so it really was a trade off.I agree that it is a cruel disease and and so debilitaing but if you could try and put yourself in your Mom's place I know that is hard but what would she want to be?So out of her mind or stiff and weak. This disease effects everyone involved with it not just the sick person. I will keep you in my thoughts!


Thu Jan 11, 2007 11:06 am

Joined: Tue Dec 19, 2006 1:18 am
Posts: 53
Location: Chicago
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Dear Cindy, What a special daughter you are to be so involved in your mom's care. She is fortunate to have you as her advocate. I am not an MD, but work in health care administration - and my mom has both LBD and Parkinson's. She was very stable for the first 3 years after her diagnosis and started on the proper meds. You probably know that meds for LBD are not the same as those for Alzheimer's or other dementias - in fact, many are harmful to those with LBD. Now my mom has declined rapidly several times. The first after my dad died, again after a long bout with multiple UTIs, and again this past summer. She has many of the symptoms you describe. This disease is killing her, and I am a realist - there will be no cure in her lifetime. BUT - there is a lot to be done for our loved ones to ease physical and emotional discomfort and pain.

Have all infections, new cardiovascular issues, other physical problems been ruled out? Be sure of that, as infections, for example, can cause symptoms that look like worsened dementia.

Have your mom reassessed by the best psychiatrist, gerontologist, neuro-psychiatrist, etc. in your area. Be sure s/he understands LBD. It may be true that some of her meds are no longer helping, or that different dosages are needed, or even that the meds she was on are no longer effective. Find out from a trusted professional what your mom's status is, and then work with him/her on next steps so that she is comfortable, in no physical or emotional pain, and you know you have done everything possible.

We all know there is a point in this disease that we cannot keep our dear ones walking, or talking or speaking comprehensibly. But we don't "give up" and walk away - and neither should a professional. The best ones will stay with us and our loved ones to the end of this journey.

Please keep us posted as you can, and know you and your mom are in my prayers.

Peace, Lin


Sat Jan 13, 2007 12:12 am
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Joined: Sat Aug 19, 2006 5:01 pm
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Hi All,
I have been reading through the posts and Lin's response to Cindy was helpful for me. My Mom has been doing poorly for the last couple of months. Her dementia has been bad for many months now. But recently the Parkinson's aspect of the disease is getting much worse. We watch her closely because she is VERY unsteady on her feet. Although we remind her frequently during the day to ask us to assist her she still tries to stand and walk without assistance and has daily falls. The whole house is carpeted thank goodness, but I am scared to death she is going to break a hip. She seems more frail every day. She used to try to make it to the rest room, but is now totally incontinent. She's eating less, and chokes on water. She is discouraged and depressed but doesn't remember why. Her primary Doc is having her evaluated by Hospice on Monday or Tuesday. I don't know when it is the right time to do this.But I am not giving up on her. But her Doc says the sudden decline (without any infections, etc) means that we are in the end stage of the disease. I always thought that would not be until she was bedridden, so it was a surprise to me that he recommended it. BUT to get back to my original point, like Lin recommended, I am going to quiz the Hospice nurse about meds, and see what their recommendation is. She has been on the same meds for many years now and I am wondering if she needs some changes. By the way, how many years have others had this disease? My Mom was dx'd with depression in 1998 and I think that was the beginning of her battle with LBD.
Thanks,
Sallyann


Sun Jan 14, 2007 2:30 am
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Joined: Sun Dec 03, 2006 12:51 am
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Thank you so much to everyone that has responded. It really helps talking with others that are in the same situation. Mom did have a UTI. After several falls, Mom was brought to the hospital for x-rays. After hearing the x-ray results that nothing was fractured on her hand, lower back and hip, I asked the doctor again about a UTI and told him that we had been suspecting it because of the strong smelling urine and her drastic decline in the last week. In addition, if her lower back hurt her then it could be from the UTI and not the fall. He agreed that it was worth looking into and would have the nursing home get a urine sample the following morning. That same night Mom started running a high fever and the nurses could not bring it down. At 2:00 a.m. they decided to transport her to the hospital and yes, it was a UTI. She is doing somewhat better although she is still weak. The same doctor in the emergency room happened to see her in August when she fell and required stitches to the face. He remembered what she looked like then and compared her to now and he felt that she was having strokes. We suspected that too because of the difference in her eyes and drooping mouth. That would also explain the drastic decline in her condition. We just take one day at a time and enjoy the moments that she can communicate with us.


Sun Jan 14, 2007 2:10 pm
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Dear Cmiller,
Are they planning on a CT scan or a MRI scan to look for the strokes?
Just wondering!


Sun Jan 14, 2007 4:10 pm

Joined: Tue Dec 19, 2006 1:18 am
Posts: 53
Location: Chicago
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Dear Friends - Isn't this issue of infections curious? Many of us could simply shrug off a UTI, but our LOs are so sensitive! Infection is one of the first problems to rule out when behavior - physical or emotional - changes. My mom's urine never changes odor, but we always know when she has a UTI - she says she "forgets" how to walk and how to use the toilet. Sure sign every time. So odd!

Several ideas to share: as we say in my 12-step group - "Just take what you like and leave (don't bother with) the rest."

Falls: If our LOs insist on walking - they may not realize they shouldn't or they insist on their independence, or cannot remember to ask for help . . . can they stand on their own? Could/would they use a walker?
And, it may be worthwhile to check into a fairly-new device that can be worn. It fits around the waist and has big padded sides to protect the hips for those on fall precautions. I don't have the info at hand, but have seen this on the Internet and also mentioned in clinical journals. A good neuro, orthopod or PT dept at a hospital should be able to order it for you. They are not terribly expensive - and we'll do all we can to prevent injury, anyway, right? My mom has 24-hour caregivers, but would certainly fall if allowed to stand or walk on her own.

When hospice is appropriate: Good hospice agencies will tell you all the ramifications. Generally, an MD writes an order for hospice care, and the person is then "certified" for hospice by the agency. When approved, Medicare covers hospice for 6-month terms. This does not mean the person is necessarily expected to die within 6 months - it's just how the government works. "Re-certifications" for more 6-month periods are common. Being on hospice does not equal "giving up." The hospice philosophy is to treat those ailments that are acute (such as infections), recognizing there is no cure for the major diagnoses (terminal cancer, ALZ, massive strokes, LBD, etc.). A good hospice doesn't just remove meds and wait for the person to pass - it's an active, involved program that draws in the family, the patient and as many kinds of providers as needed. For example, we have several folks on hospice at the senior care center where I work. Two have been on hospice for over a year. They get all their standard meds, get physical and speech therapy, are visited by great nurses weekly or more if needed, can have pastoral care or social workers or musical therapy if needed. Families are always consulted about treatments, as are our own nursing staff. Good hospice is a partnership to provide dignified, respectfu, active care for those with incurable problems. Hospice can be provided within nursing homes, at private homes, at a hospice facility, and even many hospitals have hospice. If hospitalization is required (such as for treatable pneumonia when in-home care is not enough), hospice is officially cancelled, then restarted when the person is discharged. Again, this is all about the paperwork required by the government.

Well, I apologize for the length of this! You can tell how passionate I am about hospice. When properly provided, it is a wonderful alternative to standard medical care in this country. Most of the MDs and nurses are great - also realistic. They accept there is a time when the best care is to determine what the most compassionate, useful treatments are. They do not operate in the "keep the patient alive even when there is no quality of life" mode. Your idea to consult about meds with them is a wise one.

Thank you for your ideas and just being here - I find so much comfort from you all.

Peace, Lin


Sun Jan 14, 2007 7:17 pm
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Dear Lin,
Thanks for your comments on Hospice, I agree they are a wonderful organization. They did everything to make my husband comfortable. They not only cared about him the patient but us a family but I do have to caution, all the people I am in contact with all Hospice's are not the same, but the only way to know for sure is to contact them when the need arises.
So many people dealing with LBD are caught up in a catch 22 with their insurance. Many have medicare and just a little too much income for medicaid so help for some is impossible unless they are able to pay self pay, I know I was one of them and when our Dr recommended hospice services it was such a help not so much for the meds because my Husband was a Veteran and his meds were supplied by them but I had a aide 5 days a week and eventho it was for just showers it helped so much, when my husband could no longer get out to Dr appointments the Hospice Dr came to our home and I think the real important thing about them is they are only a telephone call away in need and I know I had to call them several times over the months and they were very promp in coming to the house and helping with whatever the problem was.


Sun Jan 14, 2007 8:14 pm

Joined: Tue Dec 19, 2006 1:18 am
Posts: 53
Location: Chicago
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Hi, Irene - How wonderful for me to get to know you via this site. You have much experience to share with us all.

Another word about hospice. I agree it's vital to meet with reps from various agencies - they SHOULD share the same philosphy and practices, but sadly some are not in compliance with international standards on hospice care.

The best time to do that is before we need hospice for ourselves or loved ones.

No one with Medicare or SSI should be denied hospice care. Medicare covers it, which agencies are supposed to print in their materials. If there is a question about covered services, a good agency will immediately sort it out.

Thank you for all your wisdom. You do keep busy here - and we need your input!

Peace, Lin


Wed Jan 17, 2007 2:12 am
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Hi Lin,
Hi Yes we met on the LBDA support line? Correct?
From what I understand No one should be denied Hospice services even if there is no insurance, now I could be wrong on this but I think I hear this!
Yes Lin I do keep busy with LBD, I spent a great deal of time reserching ths horrible disease and after my Husband passed I continued researching it but I too am looking for the answers I have to somehow justify my husbands early death another reason I stay involved is because when I started out with LBD I didn't have much support and if I can answer one question to someone in need of advice it is all worth it!
I didn't have all this wisdom all that long ago about LBD but I was determined and I am still learning everyday! :)


Wed Jan 17, 2007 4:08 pm

Joined: Sat Aug 19, 2006 5:01 pm
Posts: 79
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Hi All, Lin and Irene,
Thank you for all the info on Hospice. It is very reassuring to read about the positive experiences others have had. We are having a nurse come and evaluate Mom tomorrow. It's a small world and I live in a small town, I was pleased but not really surprised to find out the nurse is someone we sold our first home to many years ago. We were young and needed more than a little Victorian house, now we are older and would like to have that cute little house back!! Anyway, I feel very comfortable knowing we will have a wonderful nurse that we can ask anything. I especially pray that I can participate in her care plan with a level head and not be overly emotional about it. I know this is a terminal illness, but we have lived with it for so many years, it just seemed that we would have her here forever. This is a reality check. But, I am not giving up, she ate ice cream tonight, and if she can do that 2 or 3 times a day she will get some nutrition and maybe perk up for awhile.
Thanks to all,
Sallyann


Thu Jan 18, 2007 1:06 am
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Joined: Tue Dec 19, 2006 1:18 am
Posts: 53
Location: Chicago
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Dear Sallyann and Cindy -

You are both in my thoughts tonight. Have been away from the forum for a while with intense (even more than usual) caregiving for my mom. Am so grateful you are getting some answers, help and support. It is truly a horrible disease (not saying there are any good ones). And the fluctuations and sensitivities can be overwhelming. My mom has had recurent UTIs for the past 14 months - clear one up, and two more come on. Very hard to tell at this point what is directly the LBD, and what the "side effects" of the UTIs.

Prayers for you and all your loved ones!

Peace, Lin


Sun Jan 21, 2007 1:27 am
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Hi Sallyanne,
I am glad you are having a hospice nurse come in to possibly get things rolling for some help with your mom, yes it is a reality check but by no means the end is near, there are people recieving hospice care for a very long time, Hospice is there for many people, Please let us know how the interview goes, I will be thinking of you and your Family! :)


Sun Jan 21, 2007 7:52 pm
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