View unanswered posts | View active topics It is currently Fri Aug 22, 2014 6:03 pm



Reply to topic  [ 77 posts ]  Go to page Previous  1, 2, 3, 4, 5, 6  Next
 Not Eating 
Author Message

Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post 
Doris,
One of the things that worked for us when my husband would also shovel the food in was someone advised using a baby spoon with a long handle and it really worked, so I thought I would pass that idea along!

_________________
Irene Selak


Fri Jun 12, 2009 4:54 pm
Profile WWW

Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post 
reetg,
I am sorry your husband is at this stage of the disease, I know it is hard to watch, we also had our wishes set and my husband didn't ever want a feeding tube, I became desperate at the end and almost had it done thinking I could save him but my daughter talked me out of it knowing her dad's wishes, sometimes we just have to let go and just pray they go peacefully.

_________________
Irene Selak


Fri Jun 12, 2009 4:58 pm
Profile WWW

Joined: Fri Feb 29, 2008 7:02 am
Posts: 537
Location: MI
Post 
My Mother sometimes will just sit staring at her plate. -like she doesn't know what to do. If I pick up the spoon and start feeding her she eats pretty good. Most of the time she'll take the spoon and feed herself after the first few bites
Sharon

_________________
syt


Fri Jun 12, 2009 6:43 pm
Profile

Joined: Wed Oct 08, 2008 10:30 pm
Posts: 976
Location: Henderson, Nv.
Post 
I am finding these posts very sad...I pray for each of you to have the strength to persevere and remain steadfast to the end. So hard to understand this terribly cruel disease. Wish I could make it go away...make it better for all of you. I am not to that stage .... yet...and not looking forward to it.

You are all in my thoughts and prayers.

_________________
Dianne C.


Sat Jun 13, 2009 12:48 am
Profile

Joined: Thu Feb 19, 2009 5:09 pm
Posts: 4
Post Re: Not eating
Thank you so very much for sharing. My mother is pretty much in the same stage as your husband is, with the same symptoms and weight loss. Yesterday she never woke up. Today, she told me she loved me and ate a bit of the puree and thickened water. She can't have real water. I think this is definitely the most difficult stage by far for me. I try to live each day as it comes but it's very hard. Has any one given you an idea of what to expect time-wise? I know she is not in pain but still feel that she is suffering. I hope she doesn't have to be this way for much longer. God bless you and keep you strong and at peace.

reetg wrote:
My husband is in the late stages of LBD. He began having swallowing difficulties about 2 weeks ago, and is now using Thick It to thicken the liquids. He has gotten to the point where he has to be reminded to chew, and then to swallow. He is under hospice care in a nursing home. The concern, of course, is that he will aspirate his food and pneumonia will result. He too has lost an extraordinary amount of weight in the past 6 months, perhaps as much as 45 pounds. At this point, there is little more to do but wait, because he is bed bound and sleeping most of the time. He had some "good" mornings, maybe once or twice a week, where he is somewhat alert, but that is a relative term compared to his levels of no alertness. Options might be a feeding tube, but we decided several years ago that we would not take that route, should it get to that point. I believe we are getting closer and closer to that time, and when it comes, he will be allowed to go without extreme measures of any kind. I do wish you well, and hope you will get some help as your mother continues to deteriorate.


Mon Jul 27, 2009 8:00 pm
Profile

Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post 
Brother Bluto -

From the sounds of it, you are suffering and probably not your mother. I'm sorry about this. Do you have the help of hospice? If not, call the MD immediately and get hospice's help for you and your mother.

Someone can live on a little bit of food and a little bit of water for a long time (weeks, months). If someone stops taking in water, they will often slip into a coma within 5-7 days, and die within a couple of days after that. For what I have heard, death that way is very peaceful. Endorphins kick in prior to the coma setting in such that the person doesn't feel hungry. If they feel thirsty, you can wet their lips with a wet towel or give them an ice chip (or a piece of popsicle).

If your mother wanted to donate her brain for medical research (and to confirm the diagnosis for blood relatives) or if this is something you want to do, be sure you've made the arrangements and give a heads-up to the brain bank or pathologist doing the tissue procurement. If this is something you haven't done yet and want to, please email me immediately.

Robin


Mon Jul 27, 2009 9:28 pm
Profile

Joined: Thu Feb 19, 2009 5:09 pm
Posts: 4
Post 
Thanks Robin for replying so fast. Yes, I am pretty shaken up and don't sleep much any more.
We do have hospice and they are very nice but not very informed on LBD. I will think on the donation. The neurologists say she definitely has LBD. Again, many thanks for the info.

robin wrote:
Brother Bluto -

From the sounds of it, you are suffering and probably not your mother. I'm sorry about this. Do you have the help of hospice? If not, call the MD immediately and get hospice's help for you and your mother.

Someone can live on a little bit of food and a little bit of water for a long time (weeks, months). If someone stops taking in water, they will often slip into a coma within 5-7 days, and die within a couple of days after that. For what I have heard, death that way is very peaceful. Endorphins kick in prior to the coma setting in such that the person doesn't feel hungry. If they feel thirsty, you can wet their lips with a wet towel or give them an ice chip (or a piece of popsicle).

If your mother wanted to donate her brain for medical research (and to confirm the diagnosis for blood relatives) or if this is something you want to do, be sure you've made the arrangements and give a heads-up to the brain bank or pathologist doing the tissue procurement. If this is something you haven't done yet and want to, please email me immediately.

Robin


Mon Jul 27, 2009 10:22 pm
Profile

Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post 
Brother Bluto,
I am so sorry you are to this point with your Mom, it is hard to watch but I agree with Robin, you are probably suffering more. This is so hard to sit by and watch such a feeling of helpness. I am glad you have hospice, for them having your Mom as their patient will help them with the next person they care for with LBD.

_________________
Irene Selak


Mon Jul 27, 2009 11:12 pm
Profile WWW

Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post 
Brother Bluto -

The only way to get a confirmed diagnosis is on the basis of post-mortem brain tissue analysis. I am ALWAYS shocked at how many people swear up and down that their loved ones have LBD...come to find out on death that it is Alzheimer's Disease, vascular dementia, etc. Anecdotally, I'd say the accuracy rate for diagnosis of LBD is 50%.

Robin

PS. You don't need to "quote" the preceding post. We all know to whom you are replying when you use our name in the greeting.


Tue Jul 28, 2009 12:56 am
Profile

Joined: Thu Feb 19, 2009 5:09 pm
Posts: 4
Post 
Thanks so much for all of your help and support. It is just wonderful to have this outlet.


Tue Jul 28, 2009 8:55 am
Profile

Joined: Thu Feb 19, 2009 5:09 pm
Posts: 4
Post 
But amidst all this difficulty I do have a funny Mom story. So for the last 3 or so weeks, she's been in and out of consciousness and swallowing is nearly impossible for her. One of her nurses says it takes about 4 tries to get anything down. So when it's time to eat, we all stand around her, shouting SWALLOW! It's goofy but it seems to work sometimes. And then we praise her when she does it. Some days are better, other days you can't get anything past her lips. But we all encourage her and make over her when she does swallow. So yesterday morning when she was having a "great day", the nurse started to feed her. After a bit of a struggle, she chewed the puree for a while and then swallowed it big as day. We were thrilled, and I said "great job Mom, awesome, that is just awesome" or something to that effect. Well, you have to know my Mom, but she gives me this side eye like "What is up with you? You think I'm stupid or something?" The nurses just about fell over laughing because that's exactly what she USED to say, and you just tell she was thinking it. Hilarious. :wink:


Tue Jul 28, 2009 9:33 am
Profile

Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post 
Glad there's still some humor in both of your lives!


Tue Jul 28, 2009 10:45 am
Profile

Joined: Fri Feb 29, 2008 7:02 am
Posts: 537
Location: MI
Post 
bits of past behavior/humor are what helps keep us going.- my Mother does that at times
Sharon

_________________
syt


Tue Jul 28, 2009 10:53 am
Profile

Joined: Sat Jan 27, 2007 8:38 pm
Posts: 712
Location: CA
Post 
Speaking of stupid ...

Lately Jerome often asks ... "Am I just stupid?"

And I have to remind him, "No, you are not 'stupid.' People are BORN stupid. People BECOME demented. I don't think ANYONE ever accused you of being 'stupid.'"

Yes, there IS a difference! :lol:

_________________
Renata (and Jerome-in-Heaven)


Fri Jul 31, 2009 1:13 pm
Profile

Joined: Wed Oct 08, 2008 10:30 pm
Posts: 976
Location: Henderson, Nv.
Post 
Oh Renata! That is just priceless!!! I have a "know it all" neighbor...I will pass that on to him...only he was born stupid and never progressed :lol:
Recently he was chastising me for discussing end of life, witholding food, hydration, etc. I asked him if he knew what he was talking about...he replied: yes, witholding food and hydration...thats the new healthcare initiative. :lol: Ahhhh the humor in stupidity.

Our LOs ARE in there somewhere....
No, Jerome isn't stupid...just the demented Lewys that have invaded him.

_________________
Dianne C.


Fri Jul 31, 2009 6:55 pm
Profile
Display posts from previous:  Sort by  
Reply to topic   [ 77 posts ]  Go to page Previous  1, 2, 3, 4, 5, 6  Next

You cannot post new topics in this forum
You cannot reply to topics in this forum
You cannot edit your posts in this forum
You cannot delete your posts in this forum
You cannot post attachments in this forum

Search for:
Jump to:  
Powered by phpBB © 2000, 2002, 2005, 2007 phpBB Group.
Designed by STSoftware for PTF.
Localized by Maël Soucaze © 2010 phpBB.fr