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 Needed Tips from caregivers with similar experience 
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Joined: Sun Jan 21, 2007 1:19 pm
Posts: 2
Post Needed Tips from caregivers with similar experience
Vadim, who was diagnosed with Parkinson's 1999 and with LBD on 2003
>has gone thru many of the stages that are described in the your
>emails. Right now, he is bed and non-responsive almost 7/24. He is
>most of the time disconnected from reality and has no mobility at
>all due to the advanced stage of Parkinson's. Half of the times he
>is incontinent as far as the bowl movement. He still has a very
>good appetite and has no problem swallowing.
>Otherwise, he is a very healthy man.
>Can anyone give me some tips of what to expect and how long this
>stage in the disease can last? Also is there anyway to make it
>easier for him to go thru this stage.
>The neurologist half a year ago, gave him 6 months to a year.
>Any advice or some information of what to expect next, will be
>greatly appreciated.

Thu Jan 25, 2007 2:56 am
Dear Hannahacham,
I see this is your first post and I would like to welcome you to the LBD forums, sounds l like you are in advances stages with your Loved one and for that I am sorry ,you ask for some tips on what to expect, it really is hard to say because all people with LBD react differently so much depends on other health problems and of course age, he could be like this for sometime and I am not sure what you mean make it easier for him, is he is any pain or distress? Have you contacted Hospice yet? You say the DR gave him 6 months to live that is a tough call to make because they really don't know if the disease will stall at a certain point, with my husband the last visit we had with the Neuro I asked the very same question and I was told a year or more and he died 2 months later because of certain events that lead to the end coming sooner than anyone could predict, Come back and ask more questions we are all her in support of one another!
God Bless! :)

Thu Jan 25, 2007 1:06 pm

Joined: Sun Jan 21, 2007 1:19 pm
Posts: 2
Post Re Needed Tips for Phase IV in LBD
Dear Irene,
Thanks for your reply.
I will try to answer your questions.
Vadim is 73 years old. He is a perfectly healthy man, if it was not for this disease. Vadim still has good moments of clarity and responsiveness with a nice big smile every few days, that last less than half an hour.
I contacted Hospice half a year ago but they did not accept him since he is eating and have no problem swallowing.
Last weekend, when I sent messages around asking for some advice of how to best care for Vadim in this stage, someone suggested to contact Hospice again. This time a nurse came by and approved Vadim, reluctantly, since he still eats well and is not loosing weight.
I feel so relieved that we will have a nurse coming by to help us deal with issues like (purple unhealthy looking backside, irregular bowl movements, coughing w/o the ability to spit out the mucus). They will also help the caregivers to bath him or give him a shower. The only problem I have is that we are not supposed to call 911 in case of emergency.
Vadim has two live-in caregivers, one stays 4 days and the other 3 days.
It is going to be a great help to have a person with a medical experience involved since most of the care was done out of guessing and common sense.
Vadim went thru all the stages, behavioural problems, not sleeping thru the nights, angry outbursts, hallucinations, delusions, etc.
Irene, I am sorry about your husband. What was the turn of events that brought to such a fast end?
Thank you again,

Fri Jan 26, 2007 9:35 pm
Hi Hannah,
You are very welcome. I am glad Hospice will be there to help, if tho they say not to call 911 doesn't mean they won't help him in a situation, we had Hospice care at home for many months and they were wonderful, the end was not fast for my Husband its just that the last time we went to the DR I asked and he said a yr or more point being they really don't know my Husband had been afflicted for some time with LBD, he died in Oct and the April before he had a very bad fall in the bathroom and fractured the T-12 in his spine and from there on it just went down hill, he very shortly got pneumonia and then the aspirations started and seemed like we just couldn't get over one thing before another started but thank you for your condolences, I know he is in a better place than he was here on earth for his last yrs. :(
Stay in touch with us here!

Fri Jan 26, 2007 11:54 pm

Joined: Sun Dec 03, 2006 12:51 am
Posts: 31
Dear Hannahacham:

I am fairly new to the website too but I can tell you this is the place that you will find the information that you need and the support to get through this. We have had different doctors give us their best guest of a timeline for my mother but they always add, understand this is in God's hands. From hearing other's experiences it sounds like the disease eventually leads to the patient not eating, infections or pneumonia. In August we were told 18 months by the Psychiatrist. In October the Neurologist gave an estimate of less than 12 months. Today the Hospice nurse said she felt it would be months, not years. It could be as little as 4 months but as long as 9 months. I know that we should enjoy the time we have left rather than focusing on the end, but I'm the type of person that would rather know in advance what I'm dealing with. Like you, I was curious as to what will I be faced with in the future and how long. For us, Mom was so stable for so many years that the turn and speed the disease took just caught us off guard. That's why I now ask the same questions you are asking. I want to know what is coming.


Sat Jan 27, 2007 11:52 pm

Joined: Fri Jan 26, 2007 2:29 pm
Posts: 57
Location: Wake Forest, NC
I am also new to the site. My husband,meand my mother care for my Mother-in-law Jackie. I have been trying to read everything I can find to see how we will know its close to end or what to expect. This really clears thing up for me. She has gone down hill this pass month and half. I have told all the siblings to come for visits not knowing if she will regonize them any more. Just reading everything has helped us feel so much better.

Sun Jan 28, 2007 12:43 pm
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