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 Not eatting or drinking 
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Joined: Sun Oct 21, 2007 4:18 pm
Posts: 835
Location: Acton, MA
Post Not eatting or drinking
Frank eats and drinks very little, some days only a bit of ice cream, that I've put his crushed meds in. I think it's his taste buds, he'll eat or drink things that he has alway loved and he'll make a face. The last full meal he had was Memorial Day, but he hadn't eatten since the prev. Thursday. I've decreased the amounts, made his favorites and end up throwing most or all away. He's lost 15 pounds in the last 3 weeks. He refuses his meds, most of the time I get his PM meds in with the ice cream. I think dehydration is my main concern, he has maybe 6oz a day, but I can't make him drink. I do have a call into his Dr. but he agrees that the hospital is the last place we want Frank. His Psychiatrist said try to get his meds in but don't stress over it. He sleeps or dozes frequently thru the day, he didn't get up for 62 hrs last week but that seems to have passed. He still walks around and went for a walk with our caregiver yesterday.

Just wondering if any of you have had to deal with not eatting or drinking when they are still up and walking around?

Thanks, Gerry

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Gerry 67, cared for Frank 71, married 49 yrs; dx 2004, passed away October 26, 2011.


Fri Jun 03, 2011 7:27 am
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3356
Location: Vermont
Post Re: Not eatting or drinking
Hi Gerry - a close friend of mine's dad has been diagnosed with PD. He is still somewhat mobile, mainly getting around in a wheelchair, and about a month ago he drastically cut his food and drink intake. He does not want to eat or drink, and does not want to be force fed. Last year when he was mentally in better shape he wrote specific instructions about interventions, including NOT wanting to be fed by others. He still is able to get food and drinks to his mouth, but he chooses not to, so he is losing a lot of weight. His wife is trying to get the ALF to honor his wishes, even though he physically can get around somewhat still.
I'm sure this is a very hard situation for you. Sending you my best thoughts and wishes. 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 Jun 03, 2011 11:50 am
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Not eatting or drinking
I wonder if Hospice would consider his weight loss and poor intake criteria for admission.

_________________
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.


Fri Jun 03, 2011 12:05 pm
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Joined: Sun Oct 21, 2007 4:18 pm
Posts: 835
Location: Acton, MA
Post Re: Not eatting or drinking
Lynn and Pat, Thank you for your posts. It never fails, when I call the Dr's or ask a question here, it all changes. This morning he had a piece of french toast, 1/2 sandwich and little soup for lunch, and supper, steak, potato, spinach and tomato, very small portion, but he ate it all. His fluid intake was also much better. He was in the yard helping me pick up sticks this afternoon. I GIVE UP !!! This disease is going to drive me nutty.

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Gerry 67, cared for Frank 71, married 49 yrs; dx 2004, passed away October 26, 2011.


Fri Jun 03, 2011 8:59 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3356
Location: Vermont
Post Re: Not eatting or drinking
I guess like everything else, this symptom can vary a lot. My dad ate a big breakfast and a big lunch the day he died. He literally ate more that day than he'd probably eaten in the previous 4 weeks combined! It is indeed a strange disease!
That's so nice your husband can help some with your chores. It probably makes him feel useful too.

_________________
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 Jun 03, 2011 10:04 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Not eatting or drinking
The fluctuation 'roller coaster'. How well I know! Yesterday, I was telling Derek's neurologist that he's doing pretty well and that I didn't think we should make any changes. He agreed. Today he had a bad day. His daughter phoned from London and he couldn't even talk to her. I put the cell phone on speaker so he wouldn't have to hold it and I said it was OK for him just to listen. But he kept trying to give me the phone back. I told his daughter that I know he was glad to hear her voice and that it meant a lot for her to phone even if he didn't respond. She understood but I was very disappointed because sometimes he is able to talk on the phone much better than off the phone.

_________________
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.


Fri Jun 03, 2011 10:25 pm
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Joined: Thu Sep 29, 2011 9:06 am
Posts: 10
Post Re: Not eatting or drinking
My MIL gets around physcially very well still. She goes to a Nursing Home 2 times a month with a group of ladies from the church (that are very aware of her issues). They have a little Bible Study and sing some songs. She loves doing this, it gives her a chance to give to others. Occasionally, she will not eat breakfast sometimes until 1 or 2. I try to get her to eat something with me in the mornings sometimes to no avail. She says she's not hungry. I dont' worry about it too much because she eventually comes down to eat. Today, was her day to go to the Nursing Home. She was leaving at 1:15 and would not be back home until 5:30 or 6. She did not eat breakfast, and would not eat. I told her she needed to eat something before she goes because she will be gone all day and that it wasn't a good thing to do. She grabbed a few grahm crackers and said "There, I'm eating." When I told her I thought she should eat something a little more sustaining, she wouldn't do it. Absolutley refused to. I told her if she didn't eat something more than a few crackers then I was going to call the lady that picks her up and tell her that she is not going. She told me "Call her". So I did. Even after that, she brought her purse and stuff down to the door like she was leaving. I had to remind her that she wasn't going. Needless to say, as all of you on this forum know, this didn't make for a good day for us. I'm not sure if I did the right thing or not. I was very concerned of her going out without eating. Even though this is something she loves to do, it takes a lot out of her. I feel like a mean person for not letting her go today. She doesn't really do much of anything else. Any advice???


Thu Oct 06, 2011 2:15 pm
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: Not eatting or drinking
Deedee, that is so hard, isn't it? All you are trying to do is protect her well being, and you wind up in a power struggle! Argh! I hate it. :roll:

If you were dealing with a healthy kid or teen, they'd probably learn a lesson from this experience. It is not certain that a Lewy person will remember a lesson from it. They are more apt to remember a vague bad feeling about breakfast.

If this were me and this were my second time around ('cause I don't always think it through the first time something comes up), I think I would send her off with a snack or two, and mention to the church lady who picks her up that MIL hasn't had much to eat yet today. She could munch on raisens or a banana or drink a bottle of Boost, etc, while she is at the NH. This would emphasize the message that I am concerned about her having energy to have a good time, prevent low blood sugar problems, and avoid a power struggle. It would allow her to participate in an activity that sounds very important to her wellbeing.

Coy has very recently had a huge decrease in appetite. I know how scary it is to see him not eat. I don't at all blame you for trying to address the issue. But punishing MIL for not eating (which may be how she sees this) is not likely, in my opinion, to have the results you want.

Don't beat yourself up over this. We all learn by trial and error. One of the nice things about this discussion board is that we can learn from each other's experiences, too.

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Jeanne, 68 cared for husband Coy, 86. RBD for 30+ years; LDB since 2003, Coy at home, in early stage, until death in 2012


Thu Oct 06, 2011 4:58 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Not eatting or drinking
I guess I would have let her go anyway unless she is diabetic. Maybe they serve snack there?

_________________
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.


Thu Oct 06, 2011 4:58 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: Not eatting or drinking
DeeDee,
I think so many decisions are taken away from our LOs that it's fine to let them make a decision every once in awhile. I'd let her go next time, but put a snack in her purse. If possible, notify the facility that there's a snack for her if she needs one.
Robin


Thu Oct 06, 2011 6:16 pm
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Joined: Thu Sep 29, 2011 9:06 am
Posts: 10
Post Re: Not eatting or drinking
Thank you everyone. I appreciate the advice. This has turned out to be a really bad day for us. I was babysitting my grandson today (which she is convinced he's always hungry, can't swallow right or some other major issue) This is probably the biggest delusion issue we deal with with her. So, combined with the power struggle over breakfast, it's NOT been a good day. :cry: I think I will def do the snack thing next time. I making hubby get me out of the house for a bit tonight. :P
Thanks again. Loving this forum.


Thu Oct 06, 2011 7:56 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3356
Location: Vermont
Post Re: Not eatting or drinking
I don't think I'd have tried to make her eat and then not let her do an activity because she wouldn't cooperate. Many of us on here have LOs who eventually slow down and then almost stop eating. It seems like it's probably a natural progression of the disease. My dad wouldn't eat, then complain that he was hungry, or he'd eat and a little while later say he hadn't been taken to the dining room for days. His eating and remembering about eating and feeling hungry (or not) got all mixed up. His intake did get smaller and smaller, and interestingly, his last day he ate a full breakfast and lunch, something he hadn't done in probably 5 or 6 months prior. This disease always brings surprises. Lynn

_________________
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.


Thu Oct 06, 2011 9:23 pm
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Joined: Sun Oct 21, 2007 4:18 pm
Posts: 835
Location: Acton, MA
Post Re: Not eatting or drinking
Just deleted my post, I'll start again. I went back to my original post, 6/3/11, and it seems we are once again on the emotional roller coaster. Frank has not eaten since Thursday except for a bit here and there, which I had to scoop half of them out of his mouth, it seems he's lost the ability to swallow. He's so thin and hasn't communicated for many months so it's difficult to know what he wants or how he feels. I haven't called our families, except for our daughters, because I've done that twice before. I wanted to post here because I know my forum family understands. Two years ago I read the journey of several loved ones had ended but our journey continued. I think we "may" be nearing the end of our journey now, but we've been here before so I will continue to love, care and watch Frank as the days go forward.

Hanging on as so many before me have done. :cry:

Gerry

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Gerry 67, cared for Frank 71, married 49 yrs; dx 2004, passed away October 26, 2011.


Tue Oct 25, 2011 7:24 am
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Not eatting or drinking
Gerry, my heart goes out to you. This is such torture! You and Frank have been through so much and I pray the roller coaster ride will stop. A big long-distance hug to you.

_________________
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 Oct 25, 2011 9:26 am
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Joined: Tue Aug 24, 2010 1:45 pm
Posts: 35
Post Re: Not eatting or drinking
Oh Gerry, I wish you strength to deal with whatever comes next and peace knowing you've loved and cared for Frank through it all. Kathy

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Kathy, 63, wife & caregiver of Tom, 64 dx 2007 (later stage) lives in dementia care facility in Durham,NC


Tue Oct 25, 2011 9:51 am
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