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 end of life questions 
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Joined: Wed Aug 16, 2006 10:27 am
Posts: 7
Post end of life questions
This is very hard to write. My sweet father has LBD and has been in a nursing home for one and a half years. His weight is now 143 pounds (his normal weight used to be 210). Swallowing is more and more difficult for him. The last few days he has not been aware of my mom's presence. The question I have is, is there a point when you discontinue medication, and how do you know when that is? What happens if/when the meds are discontinued?

Wed Aug 16, 2006 10:41 am
Dear Sad Daughter,
First off let me say How sorry I am for you and your family, about the meds they generally are taken off them when they can no longer swallow, My husband was taken off everything 6 days prior to his death and he also couldn't swallow either and I think at that point the meds were not needed most of his was to control the motor problems and since he was at end of life there really didn't seem to be a point in trying to give him these meds with the chance of not being able to swallow them.
I wish you well and Please come back again and let us know how things are going, My prayers are with you and your family at this time.

Wed Aug 16, 2006 5:49 pm

Joined: Wed Aug 16, 2006 10:27 am
Posts: 7
Thanks for sharing your experience - that is helpful. If you don't mind my asking - in your husband's experience, how did you handle the swallowing difficulties? Once it started, how long did it last? Dad has been taking his meds with applesauce for a long time now. Right now he eats "regular" food, but he has had some real scary choking episodes. He also doesn't eat near as much as he used to because he chews and chews and he gets worn out just eating a meal, often falling asleep. I'm sure this contributes to the weight loss. We have a care plan coming up soon and we want to talk about changing to soft foods or even pureed if necessary.

As I'm sure you know all to well, with this disease every day is different. I always wonder just how close we are to the "end". Dad was diagnosed with Parkinson's in 2001 and the diagnosis was changed to LBD in 2004 when he had a near fatal reaction to Respirdol (sp?). When Mom read the literature she cried with relief as it finally all made sense and she had answeres. He has good days and bad days. He retreats into his own world more and more, but he always lights up when he sees me, and I never cease to still see many glimpses of my real Dad - he knows and I know he's still there. You know what I mean???

Thu Aug 17, 2006 12:51 pm
Dear Sad Daughter,
My Husband needed his food pureed for about 4 months, the issues we had with the swallowing were for some time maybe a yr or so,of course the medical community not know much about LBD they did throat studies which in my opinion was a waste of time.........As time went on I could see my husband refusing certain foods because they became a problem swallowing things like Veg's and at some point I just started pureeing his foods, and I found he ate much better, poor guy lived his last month with Beef Stew and homemade Barley soup they were his favorite's and I felt with so much in each he was getting what his body needed, I bought one of those magic bullets and it worked real well, I even took things like fruits and pureed them, we did do alot of puddings and we stayed away from Chocolate, that was real problem for Jim and his meds I crushed and also put in things like applesauce and puddings now understand at the time I thought this was the worst thing to deal with but I later learned no too long before he passed that he no longer could swallow anything, not even sips of water, that was really a hard to watch and since my Husband had earlier stated he never wanted a feeding tube we opted to pass on that when it was offered.......
Yes you are right LBD is very hard disease and it is ever changing, My Husband didn't walk for close to a year and the 1 week before he died he was in Hospice, the Nurse almost feel over as she was walking in the check on him he was walking out of the door, She said to herself this patient doesn't walk !!
And a note on your Dad being in there, Yes he is , My Husband knew we were all with him also, he couldn't express himself but I could tell just by the look on his face, We had a late in Life child and when this Boy would walk in to see his Dad his face always lite up and Jim's sister came to Fl when we got the word that the end was near and when she walked into the room he reached for her right away, so they do know!!
Have you contacted Hospice for your Dad yet also I wanted to mention there is a product called "Thick it" it can be added to beverages to make it easier to swallow.

Thu Aug 17, 2006 1:46 pm

Joined: Wed Aug 16, 2006 10:27 am
Posts: 7
Whew, sounds like you went through a lot. This disease changes lives forever. Kinda scary to think what might be ahead yet for Dad. With God's love and grace, we'll make it. Thanks for sharing. I'll look into some of the things you've suggested.

Thu Aug 17, 2006 5:05 pm
Dear Sad daughter,
Yes we indeed did go threw alot and I would do it all over again given the chance, it took me a long time to really understand the disease!
Yes it is scary to think what might lie ahead, time is is a luxury right now so use it well and enjoy your Father as much as you can. :)

Sat Aug 19, 2006 3:09 pm

Joined: Tue Aug 22, 2006 2:28 am
Posts: 1
Dear Irene - Thanks for your active posts. It is nice that you share this information. My Uncle has LBD as well as Parkinsons and my Aunt is having a very hard time these past weeks. Seems like he has more bad days than good days. Both are in their 70's and it has been about 9 years since he was diagnosed with Parkinsons. It seems like the medications are ever changing to "chase" down what works best. But from what I can gather it seems like a very unpredictable progression. I worry that my aunt may not be able to physically take care of my uncle for much longer. She is considering a nursing home, but the finances make that a very hard choice for her. Did you progress from home care to nursing care to hospice or was it a different progression. Sorry for the direct question, but we are trying to figure out how to help her.
Thank you in advance,

Tue Aug 22, 2006 2:38 am
hi Nephew,
I am sorry to hear about you Uncle and their age issue, you are right LBD patients are difficult to care for, and I think the best you can do for them is too look for resources that can help you Aunt and add to their quality of life for both of them, Please don't apologize for asking a question thats why this forum is here for people to get their needed answers, as for my Husband I took care of him at home, he was in a Rehab the yr before he died after a hospital stay the Dr told me I couldn't care for him, he had in that yr 3 GI bleeds and each time they had to go in a repair the bleeding and the last time they did he was just so weak, I allowed it and he was there for only 3 weeks the care was terrible and I knew I could do better at home for him, they did get him up walking for a short timeI brought him home in Jan and in April he had a very bad fall in the bathroom and fracture the t-12 in his spine and from there it went straight down hill, shortly after he got an aspirated pneumonia and at that point I started Hospice in the home, They came every day bathed him and dressed him and I did the rest but what they did do was a great help and they are only a call away 24/7, the aide came daily and the Nurse came 3x's a week or more if needed., My Husband was in Hospice house the week before he died for respite and I brought him home 4 days prior to his death.
I know you are saying about a NH and your Aunt and Uncle's resources are not alot, has anyone checked into Medicaid where they would send in someone each day to help care for your Uncle,They no longer count the home as income, Does your Aunt have POA or perhaps a Living will, Probably time to talk to a elder attorney many will see you with no fee for first visit! I think the best way to help is to open your telephone book and look under senior resources and get someone in to evaluate the situation, Please come back and ask away I hope I have helped some here!
oh and a note on the PD drugs many times these very drugs go against the LBD so it is very tricky..

Tue Aug 22, 2006 1:15 pm
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