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Old 09-27-2008, 03:30 PM   #1
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Questions about Mom

Deb,
So very proud to find you on another board since our conversation on incontinence stopped long ago. I was so excited on finding this board that I didn't bother to figure out how to use it, and still don't know how to start a thread. I'll get to all that when there's nothing on my mind. You have been so very helpful, and now I find you on the board that I need! This is my first chance to look at the board or post this week. Mom took another drastic change around the first of the week. I went in on Monday and she had no idea who I was. She was at therapy eating at that time. The therapist had me stand at several distances and walk toward her saying that sometimes there was trouble with focus. When I asked her if she knew me she answered "Emma Jean"first, next she answered "six and a half" and the last time she answered "stupid." Fortunately, I saw humor in this. I told the therapist that was the best of the three answers. She has gone to mumbling so soft and random that pulling 10 words from a 2 hour conversation is pretty good. She has not known my brother or any other family member since then. Really doesn't seem to much more than notice or care that we are there. She never cares as before when we walk in and out of the door. On Friday, I told the therapist about her drinking that I had noticed. I thought she simply didn't want it. She had me try and give her a drink. It came running down the side of her mouth. She told me as the geri-psyche doctor did in a phone conversation that morning, that it sounded as if she was losing her swallowing reflex. We had been told to try and get a quart of liquid down her per day. Even with the water w/meds, I doubt that we are getting as much as a pint on many days and never more than that. I have asked 2 nurses to show me how to check for dehydration and still have no success. They both said that it was hard to tell in someone with her loose skin. I can raise the skin up on her arm and it will remain standing for a very long time. I still haven't figured how they decide on a percentage of a meal eaten, but they are usually listing her at around 25% or less. She might have eaten four small bites that day. Her food has been mechanically softened to this point. As we watched her try a small bite of peas, she only played with them in her mouth and spit them out. The same with the turnip greens on her plate...as if she had to get these little green pieces out of her mouth. The therapist to decided to request thickened drinks and pureed food to the dietician at this point. After I had told the geri-psyche of these rapid changes, he talked to me and offered to come up and talk to both my brother and I plus seeing mother if we wished. We were acquainted with him before and he has been both a great help and a great friend throughout. He has been one of the two involved professionals that have realized that I knew there was no way of prediction, but told me from past experience what their expected time for mother would be. This time the geri-psyche doctor lowered his prediction of a year from six weeks ago to thinking that six months was now looking toward the broad side. He wanted us to have the nursing home check for a UTI and do blood work to rule out any other possible infection in her body that could be playing a part in her condition. If these things showed nothing to cause decline,he thought it very possible not to be even six months and wanted us to think about calling hospice. I would love to hear any opinion you might have on any of this! Especially the dehydration...that one is bothering me. If dehydrated, should they not attempt IV fluids at this point? Can dehydration in itself not cause part of this problem?...and is there an easy way to tell?
Here's where my biggest question came in. We discussed medication problems before, but I know you can't possibly remember all this. She was placed on depakote of 125 mg about two weeks ago. If you remember, the NH wanted to greatly increase Xanax and we refused...thank goodness! She is on a fourth mg scheduled twice daily and that much more available PRN. I called to check on her this morning. The nurse on her hall told me that she seemed so sedated this morning that he withheld the xanax dosage. He thought the depakote was sedating her but said that she was very comfortable. Most have thought the depakote would calm but not sedate her. She is spending much time with her eyes closed and sleeping in the chair. Have an opinion? Thanks so much Deb for all your help and encouragement.

P.S. I appreciate ALL answers from everyone! Please don't think this to be directed toward one member only. Deb just happened to be the first to offer help. I would love to hear from all of you!

Last edited by mod-anon; 09-28-2008 at 12:15 AM. Reason: starting a new thread with this post.

 
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Old 09-27-2008, 04:54 PM   #2
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Re: how long can you go without eating or drinking

Hi, Ocharlotte!

I gotta tell ya'...The 3 responses (Emma Jean, six and a half and stupid) just cracked me up. So much that I had to go get my daughter to read it! And the reason it's so funny is that my dad is the same way.

Every morning, I go next door to his house for morning routine. Dressing, toilet, breakfast, etc. On Thursday, my husband joined me, so we were sitting at the table while dad ate his pancakes and eggs I had just made him, and he suddenly looked at my husband and then me, and announced, "I don't know ANY you people!" I laughed till I 'bout cried. I have been his daughter for *cough* 53 years, and my husband has been around forever and ever, I think.

Dad mumbles, too. Sometimes, it seems like random words, pulled out of nowhere. Other times, there is purpose in it. Most of the time, it's just frustrating. At lunch today, he said, "I want...." and nothing further. I said, "What do you want, daddy?" and he replied, "huh?" ... the entire thread of thought gone just that fast. (Speaking of "thread" - at the top of the page, you will see a button saying "New Thread". Click. New thread begun.)

As far as a prediction of the end for your mom, it has been predicted several times for daddy. He has gone a week without eating a daggoned thing before, and me pouring liquids in his mouth with a teaspoon...and then, by gosh, he'd rally! Imagine my shock and pleased surprise when I would check on him in his bed only to find him upright, standing with his walker, cheerfully peeing on the floor!

My dear, only God knows. It looks like daddy might make it another year. Two. Four. A decade. A week. Who knows? But calling Hospice is a good idea. Those lovely folks have a lot of experience working with people like your mom (and my dad. I am taking dad to doc next week and asking for an order for Hospice).

In the meantime, I have a brand new Strawberry Shortcake towel - beach towel sized, and I am throwing you an end *deb throws ocharlotte a corner* and I will hang on to a corner. Deb will take a corner, Martha a corner..and we will hang on for dear life for you.

...little deb

 
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Old 09-27-2008, 08:14 PM   #3
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Re: how long can you go without eating or drinking

Hi Charlotte.... I will find you wherever you post here.... as long as it is on the Alzheimer's Disease & Dementia Message Board. If I were you.... I would request that they stop the Depakot and only use the Xanax PRN if it is needed. If she's not responding then she has taken a dramatic turn for the worst in her disease of she's over medicated. The only way to find out is to stop the medication that might be medicating her. She is probably getting more fluid than you think, though probably not enough. If she is taking her meds with water and eating then she is getting liquid from both. The skin pinch test is probably the best way to tell if they are dehydrated but you are right, it is difficult in the elderly with their loose thin skin. Another way to tell is urine quantity and color. If it is sparse and/or dark then dehydration should be suspected. They can also do blood test to assess possible electrolyte abnormalities... especially sodium levels. This may be part of the blood work the doctor order, if not it might be worth you mentioning. At least it would answer your question about the dehydration.

It is not abnormal, at the end of dementia, for a patient to forget how to swallow. Their body also forgets how to process food. When they are not processing, even if you do get food in them, it is no benefit. Martha has first hand knowledge of this and maybe she will jump in on this subject. What you are seeing very well just might be the disease progressing. BTW, the therapist was right about the thickened puree. That is the best option in the later stages when they are not swallowing properly.

Blood work or urine output will give you a better clue as to the level of dehydration if it is there, especially the blood work. I would definitely DC the meds..... have them stopped.... and see how she responds. If she is that unresponsive she doesn't need them! It might take a while for the meds to wash out of her system, especially with her limited fluid intake, so don't expect a change over night. If her body is shutting down to the point she can not process what she is taking in there is not much you want to do about it. So ask for the blood work, ask that the meds be DC'ed, get as much food and liquid in her as possible as see where it takes you. Hospice is an amazing organization!!! They can answer all of your questions about the final stages and what should be done. They will come do an evaluation if refered by your physician so that might be another step you want to take. Even if she doesn't need them now it will give you a start for when she might.

I am truly sorry that your Mom is having such difficulties. I know it is difficult for you to watch her deteriorate so quickly. Hang in there.... My thoughts and prayers are with you and your Mom.....

Love, deb

 
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Old 09-28-2008, 12:04 AM   #4
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Question Re: how long can you go without eating or drinking

HI ALL,
Just came home from nursing home totally surprised. The nurse had told me at noon that she seemed so sedated that he withheld her Xanax dosage. Still sitting fiddling with her hands in the chair, I saw a smile as I came down the hall. I took her inside her room to try and talk in quiet and possibly understand some muffling. She knew my name, my brother's name, said she had been practicing and was counting to 10. Where we had such trouble with drinking, she asked for something to drink. I had a Pepsi. I got her a small cup full thinking that she wouldn't drink it anyway and put a straw in it. Yesterday, she bit on the straw as if not knowing how to use it. She drank a sip of the soda, commented that it was good and asked for another drink. She then asked if I had a white shake. The tech immediately brought us a cup of Ensure. She drank a little over an ounce of that with nothing running from her mouth. She sang a line of Amazing Grace, compared my hands to hers and talked about them looking alike, mentioned her grandchildren by name. After about an hour conversation, she told me, "Don't you think it's time to get home. I'm getting sleepy and all this talking has worn me out!" I was totally shocked. I made it to the back door and burst into tears. I had not seen her even know my name in 6 days. I find it hard to believe that leaving off one small dosage of Xanax that she has been on all these days could have this kind of effect. I know there is another alternative. I can't keep but thinking of the story that all people get a little better....
Come on guys! What do you think?

 
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Old 09-28-2008, 03:53 AM   #5
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Re: how long can you go without eating or drinking

About 9 months before her death, we were told by the NH doctor that my mother was no longer processing food. Although she ate a few bites now and then, nothing was being used by her body. The same was true for all the medications she was on, mostly heart drugs. She hardly drank either.

This was scary news and we half exected her to die within a week or two.

But amazingly she lasted 9 months longer.

Apparently she lived off of her boldily reserves, since she went down to 75 pounds. Normally she weighed around 120.

The doctor did not recommend a stomach tube or IV nourishment. Mom did not feel hungry or thirsty. And she did not die of heart failure, but of some infection she got, with fever. That was a very short illness, just 5 days. On the 4th day she felt better, sat up, ate a little, talked and smiled. We all thought, wow, she did it again - recovered after a big scare! She died the next day.

She was already well into stage 6 Dementia before this all happened.

It was sad to watch her waste away. Worse yet was the reaction of certain relatives at her funeral. Seeing how thin and emaciated she was, they jumped to the conclusion that this nursing home was not giving her enough to eat, or that one of us should have taken her home to fatten her up. That was wrong - she would not have been able to process food anywhere. One of the consequences of Dementia is often a lot of misunderstanding on the part of other family members. Some of them are still mad at me and my brother, for not insisting that Mom get fed regularly.

Love,

Martha

PS I love your name. My only granddaughter is named Charlotte, she is 12 years old.

Last edited by Martha H; 09-28-2008 at 03:54 AM. Reason: PS added

 
Old 09-28-2008, 05:21 AM   #6
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Re: Questions about Mom

So sorry! I've been so happy to find understanding here in the last couple weeks, I haven't taken time to learn to navigate well. I apologize.

 
Old 09-28-2008, 08:17 AM   #7
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Re: Questions about Mom

Yes, I can believe that leaving off a dose of Xanax can make that difference. These types of meds of used so frequently that sometimes we don't realize the extent of their effectiveness or their effects. Xanax is quick acting and a relative short half life. That's why it is so effective as a PRN drug. It took exactly two days for my Dad to end up in the hospital with a suspected debilitating stroked..... what we discovered was nothing more than Mom unknowingly giving him too much Xanax. He was incoherent, unable to walk, seemed unaware of his surroundings, refused to eat or drink, and showed all the physical signs of stroke. But..... nothing showed on any test. Before his discharge (after 5 days), rehab had been cancelled and he was back to his feisty self walking up and down steps and knowing our names. As soon as the Xanax was washed out of his system he was back. That is why I recommended DCing the new meds to see what happened.

Love, deb

 
Old 09-28-2008, 05:00 PM   #8
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Re: Questions about Mom

Deb,
I had found out before I left last night that the PRN Xanax had been removed from her medications. She was scheduled .25 mg at 8 am and 8 pm. When I realized that the dose that was skipped that morning was the only change that had occurred to bring so much back, I told the nurse on duty to DC the xanax for 24 hours. He realized what had happened and my excitement. I received a phone call this morning from another resident at the NH in very good mental condition but paraplegic due to a wreck. She was very upset and told me that mother had become restless about 1 am and had been given a dose of xanax. Two techs were extremely mad at being called inside during their lunch hour with three others sitting doing nothing....NOT MY PROBLEM!
I went to the NH and asked the nurse on duty this morning to pull mother's chart and check the times she had been given xanax yesterday and today. Before opening it, she told me that the night nurse had informed her that mother had become restless at about 1 am, and he had given the xanax. When she opened the chart, it said that he had given it at 8 and 8pm...right on schedule. I questioned it and she told me that his paperwork was already gone and she didn't have access to it so she really couldn't answer for sure. I went to the D.O.N. and the administrator with the story before leaving. Neither were happy. They knew that I had been very cooperative for months with the entire staff, and this was not my norm. They were very upset that he hadn't called me. As I informed them, I would not have cared if it was 1 am. I had stayed until 11 pm out of excitement and watched her remain calm. It had again been mentioned by techs and this nurse that this was not a 24 hour facility. They both assured me that this situation would be dealt with and saw more than one fault in what had been done. I was so disappointed to see my mother back not knowing me from staff. They had only been able to get fluid in her today with a spoon.

 
Old 09-28-2008, 09:42 PM   #9
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Re: Questions about Mom

Charlotte..... I would stay behind them with a vengance. They evidently have incompetance on the night shift. I would check every morning and report what I find to the DON and Admin until the problem is resolved. If they continue to give the Xanax have your doctor DC the order.... then if they give it they have broken every rule in the book and should be reported to your state department of heath that over sees facilities. As for being a 24 hour facility.... If they have residents in house 24 hours a day then they are a 24 hour facility. No patient should be medicated or neglected just because of the hour of the day.

There is no excuse for what happened last night and I hope it doesn't happen again tonight. If you don't find satisfactory resolution to this problem soon you might want to think about another facility...

Love, deb

 
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