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 Increased confusion with illness 
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Joined: Mon Feb 21, 2011 9:55 pm
Posts: 355
Post Re: Increased confusion with illness
Tell me about it Pat. Poor Dad has had several tummy bugs lately, and it reminds me of when the kids were tiny and made a mess!!!!!!!!!!!!!!!!!!! We've had the carpet removed from his bedroom and put down linoleum to make life easier. :roll:

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cared for Dad who passed away on January 28th 2013 R.I.P.


Wed Mar 30, 2011 7:49 am
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Joined: Tue Dec 29, 2009 2:28 pm
Posts: 463
Location: Minnesota
Post Re: Increased confusion with illness
Jeanne,

Back to the swallowing study. Don't give up on it. There are other things that can be done than feeding tubes and thickened liquid. Mom's had a couple of swallowing studies at her SNF. The result is that she is now on a "soft diet," which means that her meat is ground up and she gets overcooked carrots and mashed potatoes and pudding - that sort of stuff. The nurse has asked that we no longer give Mom treats in her room, as they could cause a swallowing issue (Mom loves nuts). So she goes into Mom's stash and brings her near the nurses' station for her snacks. One of the things we've been told is to try to get Mom to take a drink between each bite. If I ask her to take a drink, though, she'll refuse. It has to be her idea.

It is an issue for us to decide just how far we want to go with this, isn't it? Mom's medical directive says no feeding tube, but we hadn't thought about thickened liquids. Thank goodness Mom hasn't found anything that she won't eat or drink yet. The day I have to thicken her coffee is going to be a tough one!

I never thought I'd have to get this detailed with my decisions for Mom. But we kind of have made an agreement in our family that Mom can do what she wants to about this and if her meals become more difficult for her, we won't push things on her. But thickened liquids - I see so many other residents accepting them that I might have to be pretty tough with myself to follow through with what Mom decides.

It just didn't occur to me that the way Mom eats (or doesn't) might determine the way she dies.

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]


Wed Mar 30, 2011 1:02 pm
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Joined: Wed Oct 28, 2009 11:53 am
Posts: 969
Location: Ocala, FL
Post Re: Increased confusion with illness
katelu wrote:
It has to be her idea. ...the way Mom eats (or doesn't) might determine the way she dies.
That is exactly right. She will let you know when food no longer appeals to her. Let her make the decision and you won't need to be concerned about it.

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Leone Carroll (75); wife of Dale (75) who passed away March 23, 2011


Wed Mar 30, 2011 1:20 pm
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Joined: Fri Dec 31, 2010 3:07 pm
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Location: Minnesota
Post Re: Increased confusion with illness
katelu wrote:
Back to the swallowing study. Don't give up on it.
It is an issue for us to decide just how far we want to go with this, isn't it?
I never thought I'd have to get this detailed with my decisions for Mom. Kate


You are so right, Kate, there are an amazing number of detailed decisions to be made, and each person, each family, each caregiver has to make sense of them in their own context.

Like your family, I decided that this is Coy's decision. (Driving is not his decision -- that puts others at risk. Certain activities, like raking snow off the roof, are not his decision -- he really can't comprehend the risks of a broken bone.) He knows that by following a fairly normal diet he may choke (he has) and could even choke to death. He knows that he might get pneumonia from aspirating, and could even die from it. It is his choice to take that risk. He is not going on a soft foods diet. He is not having his tea and his gingerale and his beer thickened, no matter what a test shows. He is following his geriatrician's advice -- eat anything you want; when you discover something that gives you problems, avoid it. For example, pop corn is definitely out. Rice in a soup or in a very moist hot dish seems to be OK. A clump of rice served on the side of Chinese food causes more problems than it is worth to him.

So he is gradually modifying his eating on his own. And without telling him he is following a special diet I have modified what I serve. His food tends to swim in sauces and dressings and syrups and gravies (a huge change from the heart healthy approach we followed for so many years -- but one that seems like a bonus rather than a restriction). When I fill the candy dishes it is with little 3 Musketeers instead of Snickers. I peel his apples and tomatoes. He loves pasta and ordering that instead of a pork chop or steak is no hardship for him. We try to keep eating safer for him, but within a range that he still considers a source of pleasure.

As I've said before, I am not recommending this course for anyone else. I'm just explaining where we are at. It is a very personal decision, and I respect each family's right to make it in their own way.

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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


Wed Mar 30, 2011 4:43 pm
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Joined: Wed Dec 30, 2009 1:46 pm
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Location: WA
Post Re: Increased confusion with illness
Jeanne, I applaud your putting quality of life at the top of Coy's priorities. It is a personal issue, as you say.

I had a home health patient once, a young man in his twenties, with severe cerebral palsy. He had a feeding tube which he hated. He wanted to eat. The doctors told him and his parents that, if they let him eat, he could die from aspiration pneumonia. The young man was mentally sound and they finally decided to let him eat because he kept pulling at the tube [sutured in place!] and throwing temper tantrums. I read his obituary some time later and assumed he died of aspiration pneumonia. It was his choice. I'm sure his parents were grief-stricken but every adult does have the right to refuse treatment or procedures. It's one of the first things we tell our patients in home health!

In the case of our LOs, they are mostly older and eating is one of the few pleasures left to them. As long as Derek enjoys his ice cream he will get ice cream. And not through a tube.

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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.


Wed Mar 30, 2011 5:06 pm
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Joined: Sat Oct 06, 2007 4:28 pm
Posts: 697
Location: LA
Post Re: Increased confusion with illness
Pat, I am laughing at myself for the foods Mr Bobby ate during the last few years of his life. It was the same menu each and every day. For lunch and dinner he wanted peanut butter and jelly. When I prepared his favorite requested meals from the past, he would eat the food and 30 minutes later he asked for his peanut butter and jelly. Of course I fixed that also. That continued until the last week of his life. We were fortunate that he never had a swallowing problem.

I suppose he ate only a few bites during his five day stay in the hospital and it was at that time when the nurse offered him his medication which he had always taken from a little plastic container and swallowed with no problem, but that day he took the little pills from his mouth and placed them on the sheet. When the nurse picked one up and returned it to his mouth, he removed it and showed her his fist saying, "Do not do that again! I will take no more medicine.". I nodded to her to back off. Soon after that the geriatric psychiatrist, his PCP, and I [after checking with the forum] decided to stop the antibiotic and administer Ativan. All his anxiety went away and he drifted into a coma. Age 91. He did it his way.

Dorthea

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Wed Mar 30, 2011 5:48 pm
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Joined: Wed Oct 28, 2009 11:53 am
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Location: Ocala, FL
Post Re: Increased confusion with illness
One of the few pleasures of the last days was our little picnic at his hospital bed. I loved feeding him. I tried to make our meals his favorites and he enjoyed the food so much.

It didn't last long enough.

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Leone Carroll (75); wife of Dale (75) who passed away March 23, 2011


Wed Mar 30, 2011 6:02 pm
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Joined: Sat Jan 03, 2009 2:59 pm
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Post Re: Increased confusion with illness
Pat,
After reading about Derek liking Ice Cream so much I have to chime in here, my husband loved his Ice Cream also and I can remember a time where he had it at anytime he requested it, I used to try and sneak in the Italian ices so he would get the benefit of the liquid , he was to smart for that one.His last 10 days he spent 6 of them in Hospice house and at that point was no longer eating and the Wed before his medications were D/C because he just could swallow even the liquids, we brought him home on Fri and my daughter paniced was sure we were starving him to death and I told go ahead and make a scrambled egg chopped small and she put this tiny piece in his mouth which we had to fish out a little while later and I looked at her and said see he just doesn't want to eat, this is his choice , that was Sat and he passed on Mon so he did it his way!

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Irene Selak


Wed Mar 30, 2011 6:44 pm
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Joined: Wed Dec 30, 2009 1:46 pm
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Location: WA
Post Re: Increased confusion with illness
I love feeding Derek, too. I guess we women are natural 'nourishers', LOL! Part of the time he won't let me and more of it goes onto his lap than in his mouth but that's OK, too. He at least feels he is still able.

Dorthea, interestingly, this morning was the very first time Derek has refused his medications! The nurse tried again a little later and he took them but told her he wasn't going to go for that any more. I'm not sure what he meant as he was even more delusional than usual.

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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.


Wed Mar 30, 2011 7:15 pm
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Joined: Sat Oct 06, 2007 4:28 pm
Posts: 697
Location: LA
Post Re: Increased confusion with illness
Pat, play it by ear and think positive.

DrP


Wed Mar 30, 2011 7:23 pm
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: Increased confusion with illness
mockturtle wrote:
The doctors told him and his parents that, if they let him eat, he could die from aspiration pneumonia.


Did they also tell them that if he didn't eat, he could die from aspiration pneumonia?

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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


Wed Mar 30, 2011 8:41 pm
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