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 End-Stage 
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Joined: Thu May 31, 2012 6:51 pm
Posts: 60
Post End-Stage
I left the forum recently, but now I'm back because I need your support a lot. My husband has been having more trouble swallowing recently, even to the point of holding food and liquid in his mouth. Last night he was admitted to the hospital for a barium swallow test. This morning, however, the speech pathologist took a tray of food into my husband's room to see if he could swallow any of it. If he couldn't then there was no need for trying to do the barium swallow test. Well he couldn't swallow any of it because he has now forgotten how to swallow, and yet today he asked the nurses for water. As such, according to the doctor who is treating him, he is now in end-stage LBD. How did this happen so fast? It's only been since March that he was diagnosed with LBD. He is going to be getting a feeding tube on Monday, but in the meantime has a nasal gastro tube. He is still talking to me, still winking at me, still recognizes me and my other family members, and we are going to renew our wedding vows as soon as possible. I have asked for the hospital Chaplain to come help us with this. Next week his son, daughter-in-law, two grandchildren, and daughter are coming to see him for a couple of days. When he comes home from the hospital he'll be getting palliative care. The rest of his organs are doing fine. His heartbeat is strong, his lungs are fine, his kidneys are functioning well, and he still is strong in many ways. I've heard that this stage goes rather quickly. Is that true?

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Beth


Fri Aug 17, 2012 12:57 am
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Joined: Wed Aug 06, 2008 2:24 pm
Posts: 40
Post Re: End-Stage
I am so very sorry to hear about your husband's situation.

LBD progresses differently in each person, sometimes slowly over a decade and sometimes rapidly over a 2 year period. Depending on how far along your husband's symptoms had progressed by the time he was diagnosed, he may not have been in the early part of the disease process.

Deciding whether or not to put in a feeding tube is a very personal choice. Hopefully, you and he had talked previously about what his preferences would be in this situation, as it can be a great stress reliever on the caregiver to know they are following their loved one's wishes at a difficult crossroad. Consideration of the person's current quality of life can play a large role in the family's decision. It is usually an end-stage decision and often the individual is already on hospice care by that time. I am glad that you have palliative care lined up for him already. That will be a great help to you both.

There is no way to predict what your husband's progression will be from here, which I know is probably a frustrating answer. There are some individuals who are not bedridden for long in the end stage and others who have lived a year or more when they could no longer get out of bed. It may be general health, quality of care or even someone's constitution that plays a factor in how long they are in the final stage of LBD.

I hope that you will come back to the forums to seek support in the coming months. The community here is warm and supportive and many have already walked down the road you are on now.

With care and support,

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Angela Taylor
Director of Programs
Lewy Body Dementia Association


Fri Aug 17, 2012 5:43 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3377
Location: Vermont
Post Re: End-Stage
Hi Beth - has your husband had a hospice evaluation? If not, and the dr. thinks he is end stage, that might be something to look into asap. Was the decision to put in a feeding tube one that your husband made when he was of sound mind? Prolonging a poor quality of life would be of major concern to me in a situation like this. Personally, I'd recommend a hospice evaluation before anything as invasive as feeding tube surgery was performed. Hopefully you two have had in-depth discussions about this sort of thing and you know what HE'd want. I wish you all the best in very trying times. It is a very difficult journey to make and an exhausting one too. I hope you have a great support system around you! Lynn

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Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Fri Aug 17, 2012 7:39 pm
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Joined: Thu May 31, 2012 6:51 pm
Posts: 60
Post Re: End-Stage
Lynn:

Yes, my husband and I both discussed the feeding tube and he agreed to it. The doctor who talked to me about the feeding tube suggested palliative care because she thinks he's not ready for Hospice yet. She also told me, however, that it may only sustain his life for a few more months, not years. So I know the end is near, but neither of us is quite ready for that to happen yet, especially since his body is strong in other ways. I did look at his Five Wishes form this afternoon, however, which helped me to make a decision about his wishes on DNR, and told his nurse to put the order for DNR in his chart, which he did, as well as put the DNR band around his wrist.

In the meantime, I went to the store tonight, on the way home from the hospital, to stock up on kleenex because the tear ducts are flowing and I can't seem to get them to stop for long. And I have asked for the hospital chaplain to come in so that we can renew our wedding vows this weekend. Time is of the essence.

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Beth


Sat Aug 18, 2012 12:43 am
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3377
Location: Vermont
Post Re: End-Stage
Beth, my thoughts are with you both, and it must be very comforting to know that this was his wish. It takes a huge burden off the rest of the family when people have their wishes known ahead of time. Sending you a big hug, and I hope you surround yourself with lots of loving friends and family during this difficult time. Lynn

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Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Sat Aug 18, 2012 9:34 am
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: End-Stage
Beth,
I am sorry that you left the forums but am glad you came back for the support as there is a great deal of that here. I am sad for the findings for your husband, as to the time he has left on this earth is no longer up to us, take each day and find some good in it for both you and you dear husband !

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Irene Selak


Sat Aug 18, 2012 8:45 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: End-Stage
Beth, I am so glad to see you back! :P You need us and we need you!

I'm sorry to hear about your husband's swallowing difficulties. Here is what happened with my husband, for what it's worth: A little over a year ago he was also holding food in his mouth and seemingly not being able to swallow. His neurologist increased his Sinemet and he was able to swallow again! He said it was like other muscles where the nerves were just not transmitting their messages to the muscles.

I don't know what medications your husband is on but it might be something to go over with his neurologist. Not saying it would help with your husband--we know that all Lewys are different in their responses. God bless you both!

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Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Tue Aug 21, 2012 3:19 pm
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Joined: Tue Dec 29, 2009 2:28 pm
Posts: 464
Location: Minnesota
Post Re: End-Stage
Beth,

Can I suggest that you have some individual sessions with the hospital chaplain (or your own pastor)? It does help you get ready for the inevitable. It may take months, it may take weeks. And, as much as he needs to accept it, you also have to accept it so that you can let him go. Mom tried so hard to stay. But really the pneumonia was her way out. Yet, I really believe it was when each daughter gave Mom a blessing that she relaxed and then it was just a matter of her heart and lungs stopping. It's not a matter of just saying "I love you." It's a matter of helping your husband accept that he has led a good life, that he has given his family enough enough love, knowledge and wisdom - enough strength - to live good lives, and that he has nothing to fear from God or anyone as he enters this new place - this heaven.

But - the biggest point is that you get yourself ready. And the big thing is to see and accept that God is not taking him from you so much as He is welcoming him to a new life. Your acceptance will go a long way toward his finding the strength to accept, Which should relieve a lot of the stress you are feeling now.

Best wishes.

Kate

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Kate [i](Cared for Mom for years before anyone else noticed the symptoms, but the last year of her life was rough and we needed to place her in an SNF, where she passed in February 2012)[/i]


Mon Aug 27, 2012 1:53 pm
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