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 Not Eating 
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Post Not Eating
Good morning everyone. I am very depressed today because of my mother's lack of eating. She says she wants to eat but can't swallow very well. I watch her when she eats and I believe that she can swallow. She doesn't seem to choke when she does eat. I have mashed, pureed, blended--you name it. She will eat maybe a tablespoon and say she can't eat anymore. Jello--applesauce--banannas--all the same result. Then she coughs until she manages to spit up the little she has eaten. She is going for a barium throat swallow test today. Maybe that will tell the story. Mother has lost 40 pounds since June. 6 pounds in the last 2 weeks. She is getting very weak now. In addition, I am giving her all these meds and she's not eating--so, I'm concerned about that. I have tried her on boost. She drank 4 oz and said it made her have diarreah because she's lactaid intolerant. (There's no milk in boost.) So, of course now she won't take the boost either. I'm afraid she is just going to pass out. She averages about 8 oz of water a day--perhaps 2 oz of juice. Her lips are dry and I put vaseline on them. Any thoughts on this matter? I think she really wants to just give up. By the way, her mind is pretty good . She still has her fixed delusions, paranoia and now she sees water coming out of the shower. This morning at 5 am she was worried because she couldn't find her purse. It was right next to her on the night stand. Her major fixation is lack of money and the inability to stay in her house because we can't pay the utilities. Of course no amount of reassurance helps. She is just so unhappy. Has anyone goine through this?


Mon Oct 22, 2007 8:41 am

Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
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I see her options at this point as: getting a feeding tube or dying.

If she wants to give up, I firmly believe it's your duty to help her. This is the last gift you have for her.

Call in hospice. Let them help you speak with her.


Mon Oct 22, 2007 12:06 pm
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Joined: Thu Jan 18, 2007 11:38 pm
Posts: 65
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Hi,
I think, for what my opinion is worth, Robin is right. Not only is it a duty if she is ready to go it is the last gift you can give her. Let hospice help. My prayers are with you.

Kani


Mon Oct 22, 2007 7:10 pm
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Joined: Thu Oct 11, 2007 12:09 pm
Posts: 2
Location: bc canada
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Hello everyone... my mum was diagnosed with LBD August 2007 however her symptoms have been there for a long time and my father has kept it secret and tried not to let anyone know... She was so angry with him and at one point called a friend because he was going to kill her...they have been married 63 years and have always been in love...this is so hurtful for dad... i live 3 hours away and cannot always be there.... we talk on the phone everyday... she is in extended care now but she is trying to get out of bed so she can "go home". she is yelling and acreaming at dad and the nurses and wont take her medications.... she eats a little. i am so pleased to have found this forum as i had never heard of this terrible disease until August and now my dad is spending 10 hours a day at the hospital hoping she will get better.... i do believe now that he is starting to see that it will not happen....she has been having difficulties with memory for several years... what is this about last stages..... how long do people last in this condition. Tell me it is not hereditary. thanks for reading... June


Tue Oct 23, 2007 11:00 pm
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Just wanted to say that my mother had a barium throat swallow test done on monday. The doctor called tuesday and said her throat muscles are not working correctly due to the parkinsonion symptoms. She is to start with a speech therapist who will give her techniques to help her swallowing. I think I am already helping her do those things. Her food is pureed now and she takes a swallow of water between bites. She doesn't eat much but she does try. The doctor said that the food has a hard time going down because her throat muscles don't work properly. Her pcp is consulting with her psych doctor to review the meds and determine which ones she should be taken off. We already know that a lot of the psych meds are adverse to the parkinsons. So, we have to determine which trade off to make. I am voting to take her off psych meds to help her have better quality of life. It's difficult for her to hold a spoon without spilling because of the tremendous tremors. She now has physical therapy to help her legs and hip muscles because they are becoming painful and weak.
Let me hear from you. This forum has become my lifeline. I don't feel so alone now


Thu Oct 25, 2007 11:15 am

Joined: Tue Aug 28, 2007 7:58 am
Posts: 33
Location: Pennsylvania
Post 
We have the same problem with my Mom. She will eat but must be spoon fed by us and it takes f o r e v e r to feed her. She did go through a period when she wasn't swallowing correctly and she would choke but that seems to have gotten better on it's own. Sometimes she just refuses and other times she won't be quiet long enough to eat. She will be rambling the whole time! My mom is down to 96 lbs, she really looks anorexic, it's very sad.


Thu Oct 25, 2007 4:05 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
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Pattya,
I don't think swallowing gets better on its own. It's likely your mother is silently aspirating -- ie, food and liquid is going into the lung without her body knowing about it. So there's no coughing....it's silent.
Robin


Thu Oct 25, 2007 6:12 pm
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Joined: Thu May 17, 2007 10:17 pm
Posts: 114
Post 
My husband needs help in eating, but, lately he wants to feed himself. I allow him to try and help when necessary. This evening I had made him a favorite sandwich, he took one bite and said it "tastes like soap". I assured him there was nothing wrong with it, but, would not eat it. I have found this happening more lately. He doesn't eat a lot anymore, but, I try anything to get him to eat. He does drink "boost". I was wondering if any of your lo's have found their food tasting different. (like soap) Is this common with this disease?
Thank you and blessings to all of you and your lo's.,
maryangela


Tue Nov 06, 2007 10:35 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
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Because the sense of smell is compromised in LBD, it stands to reason that the sense of taste is changed too.

Try to mix as many things with Boost as you can!


Tue Nov 06, 2007 10:38 pm
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I found in our course of LBD that the taste of food is something that is effected, I found that my husband used more salt. pepper and sugar as time went on, he was never big on adding things prior LBD.


Sun Nov 11, 2007 9:09 am

Joined: Thu Nov 01, 2007 10:46 am
Posts: 5
Location: Peterborough England
Post 
My Dad died in April 2004.

He literally starved to death thanks to LBD. Before he was sectioned in 2003 he was very paranoid and had frightening hallucinations.

As a family we didn't understand or indeed have any knowledge of LBD - we had never heard of it.

Anyway, my Dad refused the medication he was prescribed and my Mother, in her despair, put the tablets in his cup of tea. Unfortunately one didn't disolve and he found it. He accused her of trying to poison him and it was downhill from then. He refused to let anything pass his lips.

It was a dreadful time, and my Dad didn't deserve to die in such a cruel way.


Sun Nov 11, 2007 2:22 pm
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Joined: Sat Oct 06, 2007 4:28 pm
Posts: 759
Location: LA
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Carole, it has been four years and your heart is still crying for the way it was. Your mother did what she was told to do and she tried her best with the knowledge available at that time. Unfortunately that is still happening even though LBD has been identified since 1998 [?] I think. I only became aware of it a month ago, because I seasrched the internet and found this site. Please try to bury the guilt you and other family members feel. You did what seemed to be the best given the knowledge available at that time. This is for a big thank you to all who have gone through trials and given the medical world information to help those of us who are walking with our loved ones and in many cases preventing what happened to your parents. Thanks to you and Irene and Robin and many others for sharing your experiences and making life somewhat easier for our loved ones. Please know that we care.

Dorthea

_________________
"See this lady she's 85 but she's nice", This is the way my husband, Mr B., introduced me in 2006 to the people only he knew. Death due to pneumonia. Lewy Body Dementia diagnosed post mortem at Mayo Clinic in Jacksonville Florida.


Sun Nov 11, 2007 3:02 pm
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Carole UK wrote:

It was a dreadful time, and my Dad didn't deserve to die in such a cruel way.


Dear Carole,
I am sorry that you lost your Dad and you are right it is a cruel disease,
Its very hard to witness the decline in a person with LBD


Sun Nov 11, 2007 6:47 pm

Joined: Thu Nov 01, 2007 10:46 am
Posts: 5
Location: Peterborough England
Post 
Thank you for your kind words.
Unfortunately, at the time was Dad was diagnosed and sectioned my family weren't offered any form of support. We'd never heard of Lewy Body Dementia. I did not know this website and forum existed.
When my Dad passed away - (it was on the day of my parents 51st Wedding Anniversary), my initial prayer was "Thank God, You are free. Thank God, You are free".
But the memories of travelling alongside him through every phase of his illness (and not at all understanding what was happening to him), are as fresh as ever.


Mon Nov 12, 2007 10:15 am
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Carole UK wrote:
We'd never heard of Lewy Body Dementia. I did not know this website and forum existed.
.


Carole,
Even in this day so many people have never heard of Lewy Body Dementia,This forum didn't exist 4 yrs ago and I think the LBDA was formed in 2003, as you can see the need is very great for it.
Good Luck!


Mon Nov 12, 2007 3:19 pm
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