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Medical Forum / Diseases and Disorders / Alzheimer's / May 2004Good News
We had our appointment with the medicaid people today and it was a breeze (so far). Ida's doctor finally signed the medical form to admit her to a nursing home. The medicaid representative said that since medicaid application is in process we should have no problem placing her. Tomorrow is another day, let's see how far we get then.  SignatureRegards, Evelyn (to reply to me personally, remove 'sox") Evelyn, I hope things keep progressing quickly. Gwen Signature*************************************************************************** *** "Wear a smile and have friends; wear a scowl and have wrinkles." - George Elliot *************************************************************************** *** | We had our appointment with the medicaid people today and it was a breeze | (so far). [quoted text clipped - 4 lines] | process we should have no problem placing her. Tomorrow is another day, | let's see how far we get then. > Evelyn, I hope things keep progressing quickly. > Gwen *************************************************************************** > *** > "Wear a smile and have friends; wear a scowl and have wrinkles." > - George Elliot *************************************************************************** > *** > [quoted text clipped - 7 lines] > | process we should have no problem placing her. Tomorrow is another day, > | let's see how far we get then. > We had our appointment with the medicaid people today and it was a breeze > (so far). [quoted text clipped - 4 lines] > process we should have no problem placing her. Tomorrow is another day, > let's see how far we get then. Evelyn, I can only hope 'another day' will go as breezily as today for you all. It's just astonishing that there would be any delay at all in the doctor signing off on admitting Ida to a nursing home. I hope placement goes as smoothly. -- Robert Thanks so much everyone for your good wishes. They are much appreciated. Today we have our Alzheimers support meeting. They meet monthly, and the lady who runs the group is an ombudsman. We are hoping she has some good news for us too. Last night was another rough night, with Ida pulling off her diaper (perfectly clean and dry) as well as a wet bed and all. She is giving me a LOT of trouble about eating. I just don't know what to do anymore. She takes one or two bites and says she isn't hungry and refuses the rest of the food. Even her favorite soups get the same treatment. We nag at her a few times and try to pursuade her to eat some more and lots of nagging gets maybe three more bites down, then she says no and means it. If she does this in the nursing home, I SWEAR I will not allow them to use a feeding tube on her. I do believe it is nature's way of slowing her body down, but it is still very stressful to see a person who won't eat day after day. The only meal she finishes is the egg and piece of toast I give her at breakfast. SignatureRegards, Evelyn (to reply to me personally, remove 'sox") >If she does this in the nursing home, I SWEAR I will not allow them to use a >feeding tube on her. I do believe it is nature's way of slowing her body >down, but it is still very stressful to see a person who won't eat day after >day. Hi Evelyn, Just make sure that the nursing home very clearly understands your wishes with respect to supportive measures. Even though my Dad was in hospital, when he was moved from floor to floor, they added antibiotics as a matter of routine--nevermind the fact that we desired the contrary. >The only meal she finishes is the egg and piece of toast I give her at >breakfast. If Ida really likes her egg and toast, maybe add them to her meals later in the day (remove the yolk if you're concerned about her cholesterol). Here's to another positive day. Take care, Darryl. > >If she does this in the nursing home, I SWEAR I will not allow them to use a > >feeding tube on her. I do believe it is nature's way of slowing her body [quoted text clipped - 19 lines] > Take care, > Darryl. Dear Darryl, I am not in the least bit concerned about her cholesterol, though it was a bit high. The doctor put her on lipitor recently as a matter of fact. I think that when one is 84 years old, has alzheimers in later stage, and is headed to a nursing home because of the loss of so very much ability to care for oneself, that it is wisest to stop being concerned about dietary bugaboos and let her have pretty much what she will eat, but with some care and some exceptions. One thing I DO limit (in fact have cut out) is all sugar from her diet. Her coffee and tea get Splenda in it just like my own. I give her only a small amount of carbohydrate heavy foods now that she is a diabetic. If I were in her shoes I would want to be released from the jail my own body had become, more than anything. That is how I really feel, but of course that is not how I behave with Ida. I do everything I can to make her comfortable and happy. I realize that now is the time to start to draw some serious lines in the sand about how far we will go to keep her alive and ticking,..... such as her life is now. She has signed all the necessary living will stuff and all, but there is still a lot that will be left in our hands to decide as things arise. SignatureRegards, Evelyn (to reply to me personally, remove 'sox") Evelyn, I agree about wanting the body released from the late stages of AD. I was so glad Grayson died before getting to the last stages. He knew us and could talk (before the surgery) and could walk with help. We didn't have to go through the helpless AD stage, and near the last the only meds he got was for pain & nerves. Gwen Signature*************************************************************************** *** "Wear a smile and have friends; wear a scowl and have wrinkles." - George Elliot *************************************************************************** *** | > >If she does this in the nursing home, I SWEAR I will not allow them to | use a [quoted text clipped - 49 lines] | all, but there is still a lot that will be left in our hands to decide as | things arise. I feel the same as you about the drawing of lines. This food thing? I recall from one of my classes as some point they were covering death and dying, and the desire to eat less came up. The instructor said that forcing food on a body that was trying to slow down and shut down, could be actually physically painful for the person. That it was a natural part of the process, and that feeding tubes, etc. were cruel. I never forgot that. Of course my Momma lives to eat :):). So far. I think that is an indicator that she has a while to go yet. > > >If she does this in the nursing home, I SWEAR I will not allow them to > use a [quoted text clipped - 49 lines] > all, but there is still a lot that will be left in our hands to decide as > things arise. > I feel the same as you about the drawing of lines. This food thing? I > recall from one of my classes as some point they were covering death and [quoted text clipped - 4 lines] > course my Momma lives to eat :):). So far. I think that is an indicator > that she has a while to go yet. Yes, as long as there is a desire to eat, why not let them have what they want? I feel as though she is trying to shut things down her own way. SignatureRegards, Evelyn (to reply to me personally, remove 'sox") >I think that when one is 84 years old, has alzheimers in later stage, and is >headed to a nursing home because of the loss of so very much ability to care >for oneself, that it is wisest to stop being concerned about dietary >bugaboos and let her have pretty much what she will eat, but with some care >and some exceptions. ... >If I were in her shoes I would want to be released from the jail my own body >had become, more than anything. > >That is how I really feel, but of course that is not how I behave with Ida. >I do everything I can to make her comfortable and happy. To tell you the truth, this is what I was thinking and although I think I've shared it in the past, I try not to go down that road for fear of upsetting anyone. My family and I had it *easy*; you'll recall that within a matter of weeks, my Dad went from walking and talking to his passing. He didn't want to die a chronic death like his Mom although my decisions (I had medical power of attorney) against medical intervention helped nature/God/[insert belief system here] take its course. >I realize that now is the time to start to draw some serious lines in the >sand about how far we will go to keep her alive and ticking,..... such as >her life is now. She has signed all the necessary living will stuff and >all, but there is still a lot that will be left in our hands to decide as >things arise. My line was bold and an incredibly difficult one to draw. It was simply a glucose solution (i.e., D5W). No antibiotics, no ng tube or resuscitation; he stopped eating on his own. Probably one of the most difficult roles I'll play in my lifetime. Darryl (the 32 y.o. crybaby :) > >I think that when one is 84 years old, has alzheimers in later stage, and is > >headed to a nursing home because of the loss of so very much ability to care [quoted text clipped - 32 lines] > Darryl > (the 32 y.o. crybaby :) It was incredibly brave of you Darryl, and I am sure it was for his ultimate better good. I can see absolutely no reason to go to extreme measures to keep someone alive in this shape. I know for a fact Ida does not have the brainpower left to hate her life anymore, but she was the kind of a person that if there was nothing left to enjoy anymore, I know she would say "why go on?" Actually when she first realized she had something really wrong going on several years ago, she was threatening suicide constantly. I am going to try and be as brave as you were Darryl. If the situation goes to that point, which it probably inevitably will, I will OK pain meds and no more. I do know that I will stick by my guns about absolutely no feeding tube, because she is getting worse and worse about eating. But for now we just need to get her into the nursing home. We are going to be bringing the documentation there tomorrow and hope they have a bed. There is a second nursing home nearby also that is very good too, but I am hoping for the one that I know for sure is the best in the county, and it has (supposedly) the highest rating in the state! I know some people who work there and also people who have family members there and all have only the highest praise. When we checked it out it was spotless and all seemed very much in order. SignatureRegards, Evelyn (to reply to me personally, remove 'sox") I don't think so;~) SignatureMare mfcoleman@THEOLEmindspring.com http://www.muggsmulcher.com/kstuff/a.s.a/intro.htm alt.support.alzheimers' FAQs and Stuff Pages snip > Darryl > (the 32 y.o. crybaby :) > Thanks so much everyone for your good wishes. They are much appreciated. > [quoted text clipped - 19 lines] > The only meal she finishes is the egg and piece of toast I give her at > breakfast. Why not give her egg and toast for every meal? Seriously? SignatureTumbleweed Remove my socks for email address > > The only meal she finishes is the egg and piece of toast I give her at > > breakfast. > Why not give her egg and toast for every meal? Seriously? Afraid she will get tired of it and it will mess up a good thing. So far she will still do pretty well OK with soup, but even that is getting iffy. SignatureRegards, Evelyn (to reply to me personally, remove 'sox") > > > The only meal she finishes is the egg and piece of toast I give her at > > > breakfast. > > > Why not give her egg and toast for every meal? Seriously? > > Afraid she will get tired of it and it will mess up a good thing. Come on, you arent thinking straight ( I cant blame you with what you have put up with) how would she get tired of it? Its first time, every time, from her POV. SignatureTumbleweed Remove my socks for email address > > > > The only meal she finishes is the egg and piece of toast I give her at > > > > breakfast. [quoted text clipped - 6 lines] > put up with) how would she get tired of it? Its first time, every time, from > her POV. LOL.... how true Tumbleweed! Yesterday was terrible and she didn't want anything to eat and every spoonful was a hassle........ So here is how today went Today she had her egg, buttered toast and decaf coffee for breakfast. (She finished it all) Lunch was chicken vegetable soup, a slice of buttered bread and a cup of tea (She left some of the soup but ate the bread and drank the tea) Dinner was chicken and gravy, mashed potato and boiled carrots (very small portions) and a glass of soda. (She left some chicken and some of the potato but she did eat most of the meal) So we aren't quite down to that yet, but yesterday was a hassle all day. I would say she eats about as well as a little kid would. I am ready to try a Mc Donalds happy meal if she would get it down! SignatureRegards, Evelyn (to reply to me personally, remove 'sox") "Evelyn Ruut" <mama-lionsox@hvc.rr.com> wrote in message news:tcihc.36534 (snippage) > > Come on, you arent thinking straight ( I cant blame you with what you have > > put up with) how would she get tired of it? Its first time, every time, [quoted text clipped - 20 lines] > I would say she eats about as well as a little kid would. I am ready to > try a Mc Donalds happy meal if she would get it down! I've seen many adults ordering Happy Meals, so Ida would hardly be the first. Could appetite changes be due to the antibiotics she's on for the UTI? You did say this behavior is fairly recent. Maybe she's got indigestion or something from the meds, leaving her nauseated or just not hungry. She seems to be preferring starchy stuff, which is what I eat when my reflux is acting up. Does she like potato and sour cream (cools an acid stomach down with amazing facility)? How about a milkshake? Adelle > "Evelyn Ruut" <mama-lionsox@hvc.rr.com> wrote in message news:tcihc.36534 > [quoted text clipped - 38 lines] > > Adelle Adelle, the meds were over with a week ago. I also can't get her to drink much in the way of liquids no matter how nice they are. She says she is not thirsty. Not getting enough fluid will aggravate reflux too. SignatureRegards, Evelyn (to reply to me personally, remove 'sox") Evelyn-- I want to add my good wishes (& I am sure a prayer wont hurt) that you get the news a place is available for Ida. I also think if the eggs, toast & tea is what Ida will eat..give it to her whenever>>> Don has diabetes too, as do I. When he first got that diagnosis we went to nutation classes...etc. This was before I was diagnosed many years later. I worried more that the sugar would drop too low...He still takes Prandin which has about a 3 hour working period. & Glucophage...The last few times we had gone to the Dr.(in fact 2 Drs.) and have discussed my concern,,,one actually said in essence---should his life be more miserable?.. So occasionally we go Wendy's drive thru for a couple of $1.00 bacon burgers>>> &. yes!!! a Frosty... Again---Best wishes Florence Evelyn, I hope that the transition goes well, and that Ida will be comfortable. I know that you are probably agonizing about it, but I'm sure that once the move is done, you and Peter will enjoy spending quality time with Ida and having your lives back. > Evelyn, > > I hope that the transition goes well, and that Ida will be > comfortable. I know that you are probably agonizing about it, > but I'm sure that once the move is done, you and Peter will enjoy > spending quality time with Ida and having your lives back. Thanks so much Dennis. Just getting a full nights sleep and not having to be continually watchful, and maybe JUST ONCE to spontaneously get up and go for a drive or to a movie would be pure heaven. We are just so burnt out. Our "granny sitter" neighbor is going on a vacation for a month to her family in Europe soon, so we would not have any recourse at all to get out for any thing during that time unless the placement goes through. We truly need the break. I am comforted knowing that Ida's last three years here were made as good as they possibly could have been made. I am worried though that she won't eat. She has been getting a lot worse with that. SignatureRegards, Evelyn (to reply to me personally, remove 'sox") > I am comforted knowing that Ida's last three > years here were made as good as they possibly could have been made. I am > worried though that she won't eat. She has been getting a lot worse with > that. my observation from watching folks at the local pioneers' home is that some folks seem to have just enough cognition to know that if they die there, they don't want to die it total AD oblivion, and just make the decision that they've had enough and it's time. once they do, their body seems to just follow that desire to shut down, and it slowly does, starting with the appetite disappearing. wouldn't you prefer for her to fade away in the next few months instead of lingering on in semi-conscious limbo for a couple of years? > > I am comforted knowing that Ida's last three > > years here were made as good as they possibly could have been made. I am [quoted text clipped - 11 lines] > next few months instead of lingering on in semi-conscious limbo > for a couple of years? As you know I am a buddhist, Dennis. So what I personally would choose doesn't really matter in the big picture. What matters is her karmic situation. What I would want for her is for her karma to be fulfilled.....whatever is written in her heart, in her desires and needs, for her own disposition of karma; and thus for the end of her life to fall into place in a natural enough manner....... so that her task is finished here within this lifetime, and that her next lifetime begins with a better set of circumstances and a cleaner slate. I don't believe in artificially prolonging a life which has lost its meaning and its quality, but if there is something I can relieve and make her more comfortable, that is OK. You know my feelings about feeding tubes. No way. No interference other than comfort measures. We intend to stick by that and we are both in agreement. I guess essentially that is what I would wish for all including myself. The whole concept behind preserving the last vestiges of life - even through heroic artificial means, is predicated on the wild hope that a "miracle cure" just MIGHT be found somewhere. But even if they came up with a "miracle cure" tomorrow, there is no way in the world they could grow new brain tissue or get back the parts of their brain which have withered away or the memory capabilities which are lost. A "miracle cure" could only help those who were only just starting to get it. For someone in this late stage, even a "miracle cure" would do no good at all but to preserve them in this present state. That would be a living hell. SignatureRegards, Evelyn (to reply to me personally, remove 'sox") Evelyn, While I agree that you shouldn't force someone to eat it might just be that her perception of the food is somewhat warped. Try different things to see what she might eat. I found my Mom would eat anything thing cold like ice cream. There are also residents in her NH that survive on Mighty Shakes(cold milk shake like thing). Try spicy or salty items. I know you don't really want some things in her diet but heck at this point.................. SignatureMare mfcoleman@THEOLEmindspring.com http://www.muggsmulcher.com/kstuff/a.s.a/intro.htm alt.support.alzheimers' FAQs and Stuff Pages > > "Evelyn Ruut" <mama-lionsox@hvc.rr.com> wrote in message news:tcihc.36534 > > [quoted text clipped - 46 lines] > much in the way of liquids no matter how nice they are. She says she is > not thirsty. Not getting enough fluid will aggravate reflux too. > "Evelyn Ruut" <mama-lionsox@hvc.rr.com> wrote in message news:tcihc.36534 > [quoted text clipped - 28 lines] > I've seen many adults ordering Happy Meals, so Ida would hardly be the > first. > I'm one of those Happy Meal adults!!! Evelyn, my Mom was the same way about eating for the last 6 months or so. She was real good about drinking her Ensure shakes but didn't really have an appetite for meals. I told my sister not to worry about it---let her eat what she wanted whenever she wanted. Has the NH asked you about a DNR being posted in her room? Always, Char > Could appetite changes be due to the antibiotics she's on for the UTI? You > did say this behavior is fairly recent. Maybe she's got indigestion or [quoted text clipped - 5 lines] > > Adelle > > "Evelyn Ruut" <mama-lionsox@hvc.rr.com> wrote in message news:tcihc.36534 > > [quoted text clipped - 30 lines] > > > I'm one of those Happy Meal adults!!! Evelyn, my Mom was the same way about eating for the last 6 months or so. She was real good about drinking her Ensure shakes but didn't really have an appetite for meals. I told my sister not to worry about it---let her eat what she wanted whenever she wanted. > Has the NH asked you about a DNR being posted in her room? Not yet, but we have one on file in her paperwork. SignatureRegards, Evelyn (to reply to me personally, remove 'sox") Evelyn, My mom loves the chicken mcnuggets meal, we order it all the time. If that is what Ida will eat, go for it. Then she is eating. My mom isn't eating at all and when she does it wouldn't even feed a bird. I had her here last Saturday and she seem to love the Peek Freans, fruit creme cookies & yogourt. So she does eat when she is home with us. Bt I can't have her home everyday to eat, I wish I could. Give a try, Mcdonalds doesn't care who orders the happy meal and who it's for. good luck, Dianne > > "Adelle D. Stavis, Esq." <adcstavis@comcast.net> wrote in message > news:<mblhc.37403$ru4.35299@attbi_s52>... [quoted text clipped - 47 lines] > > Not yet, but we have one on file in her paperwork. ... >She is giving me a LOT of trouble about eating. I just don't know what to >do anymore. She takes one or two bites and says she isn't hungry and [quoted text clipped - 7 lines] >down, but it is still very stressful to see a person who won't eat day after >day. Of course it is - but I think you're quite right about the feeding tube. Have you tried any of the liquid foods, like "Ensure"? Evelyn, You might want to try getting some of those one piece jumpsuits(pants and top in one) that close at the back. That way she can't change herself and they stand up to NH washings. SignatureMare mfcoleman@THEOLEmindspring.com http://www.muggsmulcher.com/kstuff/a.s.a/intro.htm alt.support.alzheimers' FAQs and Stuff Pages > Thanks so much everyone for your good wishes. They are much appreciated. > [quoted text clipped - 19 lines] > The only meal she finishes is the egg and piece of toast I give her at > breakfast. Evelyn: Good luck, its a slow process but a positive one. Thinking of you, Dianne > We had our appointment with the medicaid people today and it was a breeze > (so far). [quoted text clipped - 4 lines] > process we should have no problem placing her. Tomorrow is another day, > let's see how far we get then. Oh wonderful news. Please post lots about how this goes. > We had our appointment with the medicaid people today and it was a breeze > (so far). [quoted text clipped - 4 lines] > process we should have no problem placing her. Tomorrow is another day, > let's see how far we get then. |
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