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Old 09-19-2008, 10:45 AM   #16
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Re: Advice please on beginnings of incontinence?

Deb,
I got a good laugh out of the pink cadillac, but it immediately brought something else to my mind. There is a woman in the nursing home with mother that says she was married to Elvis for many years and divorced him. So many of the other residents believe her and she tells them stories about their life. Did he not own a pink cadillac?Hmmm!
I had watched for sundowners in mother long before now and never seen any signs of it until now. The time is usually about 1:30 to 5:00 in the afternoon, but sometimes that is much different. There have been days that she remained that confused all day. There have been a couple of mornings that she has awakened around 2 am and not settled down until lunch time or later.
The latest change is her insistence on pulling her clothes off. This one is really out of character. When she left the nursing home 6 months ago, she would not allow the male nurse to do anything for her. When he saw her light on, he would smile and tell me that he would find one of the girls. Now she has been found sitting in the bed three mornings without a stitch of clothing on!
The NH has an inhouse doctor. This part, I'm not crazy about. When she was there last time, mother was put on two medications without me being aware of it. I let them know that I preferred to know of medicine changes. The nurse called me yesterday afternoon. She had returned only two weeks ago from 5 days in geri-psyche evaluation for the purpose of trying to find a helpful medication to help calm her but not put her in more danger of fall since it is of utmost importance to try and keep her walking at this time. Seroquel had been tried before she was admitted, and it caused total chaos. She would say that she was tired but never go to sleep. Instead, she was turning a walker upside down and backwards trying to walk on it. At the end of the five day stay, they came to the conclusion that any antipsychotic was going to cause more fall danger than helping confusion. On the last day they decided to put her on 2.5 mg of Xanax twice a day.
The NH called me and asked me to talk with her nurse when I came in yesterday afternoon about a medicine change that they had orders to make. I found out that she had been put on Depakote two days earlier by the NH doctor, and they were now asking to up her Xanax from 2.5 mg to 10 mg twice daily with even more for PRN in case of a really bad day. I had to veto this one! That seemed like too much change with a new medicine just added. I asked them to call the geri-psyche doctor and talk to him about the use of both medications because it had been only two weeks since her evaluation. They just called me saying that he agreed to try the Depakote but not to raise the Xanax dosage at all. Thankfully, the nurse was also in agreement. She thought that to be a too much of a dosage increase at one time also. I hope I did the right thing. I want her as comfortable as possible also. What I don't want is to increase the fall danger or see her zonked out all day.
Every day brings a new challenge. I already see the next one coming, but I don't know the answer for it! She is eating anywhere from 2 bites to 25% of meals. After the IV for dehydration, I was told to try to get at least a quart of liquid a day in her. This is not working no matter how hard I try. I doubt we're managing a pint a day without her spitting it out. Oh well, a new challenge every day.

 
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Old 09-19-2008, 11:55 AM   #17
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Re: Advice please on beginnings of incontinence?

I have to smile every time I think of the pink cadillac..... and I think you are right about Elvis owning one. The other little lady that always delighted me was the one that thought she owned the building. She said she charged a quarter a day for those people to rent a room. She would talk "business" with me all the time. I did learn to go into the conference room to count the vending machine change after she charged over my desk accusing me of stealing her rent money. Any time she got upset it cost me exactly a quarter to settle her down She used to sit in my office because I would let her have a dip of her snuff. She made a gigantic mess with it in her room and was out of control when we wouldn't let her have it. Yet she would sit calmly and talk business with a tiny dip in her cheek when sitting with one of the staff. Sometimes the solutions are easy and sometimes they are impossible.

Sundowning is not always at sundown. Their patterns do vary depending on the day but as a general rule it is late afternoon and evening. Then there are those like my Mom that I swear sundowns when she gets ready.

I can't get clothes off of my dad... until he decides it's bedtime and then the boxers and t-shirt don't come off. I have not had a problem with either of my parents pulling off their clothes but my grandmother did that. Never forget the night we had to go look for her. Found her walking down the street with just her underware on "looking for her dad". Two options which I found useful at the facility. One was more comfortable clothes. Sometimes clothes that are binding, itchy, or stiff which irritates the skin and they take them off for comfort. A change to soft loose elastic improved the problem. Also cut out scratchy tags and be sure there is no invisible plastic thread stitiching that touches the skin. There were occassions we used clothes that tied, buttoned, or zipped up the back. These were much more difficult to get off and they eventually gave up trying.

I think you did exactly right with the medication. You don't want to zonk Mom out and create more of a fall risk than she already has or immobilize her. It is a delicate balance between calm and out of it. Sometimes doctors are a little to over zealous with the medication and you are your mom's best advocate. Kudos to you for requesting that you be notified of all medication changes. A bad afternoon doesn't mean she needs to medicate consistently. I am more in favor of PRN unless the aggitation is consistent. Be very aware of any side effects and report them immediately on any medicatin changes. ... and know that your Mom is not going to be a smiling cheerful self all of the time. She has been plunged into a chaotic world that she doesn't understand and it is going to produce the occassionally anxiety, paranoia, and distress. A small dose of sometimg to take the edge off has worked well for Dad. He does have a PRN as well for those bad time but I agree that 10mg of Xanax twice a day is way too much.

As for the Depakote watch for any signs of liver compromise...... nausea, vomiting, stomach pain, or loss of appetite, low fever, dark urine, clay-colored stools, or jaundice (yellowing of the skin or eyes). You might want to check with the Geri physician or pharmacist on this one because there is a warning if the patient has bleeding or clotting problems. It may refer to natural problem not those related to blood thinners but I would make sure. With any new meds I do a web search for the side effect and interactions of the new medication to know what to look for. Most medications take a few days.. up to a week or 10 days... to know their effects so give what she is on time to work, while watching for side effects, before jumping on something else because it didn't work in 6 hours.

Hydration can be a major issue but you can only do so much. Just do what you can and deal with what comes. Know the symptoms and be proactive but don't let it drive you nuts. We do the best we can, with what we have to work with, at any given moment.... and that's ALL we can do.

Again.... you are you Mom's best advocate. Learn all you can about every aspect of her disease. Know the medication side effects of the medications she is on. Make friends with the geri physician and your personal pharmacist and don't be afraid to ask questions. Knowledge is the best weapon you have.

I just got off the phone with Mom...... and it's a GOOD day YEAH!!!!!

Love, deb

 
Old 09-19-2008, 12:00 PM   #18
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Re: Advice please on beginnings of incontinence?

Last year on Labor Day the NH where my Mom was had an outdoor concert and barbecue for the patients. An Elvis impersonator was the big attraction. For days afterwards Mom told everyone that Elvis had been there! The real Elvis! And not a day older than in 1970. Well, of course, in her mind it was 1970 and he was alive.

Not only her -- all the people who sat around her table discussed Elvis' appearnace at length for several weeks, until it faded from their memories. One of the highlights of her NH stay. Try to top that one at home!

Sadly she died in December, making her NH stay 2 years and 3 months. I do think most of it was happy.

I hope your Mom gets the meds straightened out; too much is not good for anyone.

Good luck.

love,

Martha

 
Old 09-20-2008, 12:37 PM   #19
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Re: Advice please on beginnings of incontinence?

Well, I do think this board has gone from the question of incontinence to whether or not Elvis is alive! Oh, well, we've all got to laugh a little. Deb, once again thanks for your reply. Graduating from social work, I knew all about AD, and had developed some knowledge of medications. However, I am surprised to find someone else as inquisitive and determined to understand what's going on as I. I have already looked up the medication on the web and found the side effect you were talking about. I also saw a warning about using it with aspirin. That one I have already found the answer for. It is okay but they have to keep a check on the blood at regular intervals which I like the idea of anyway. The bleeding and clotting, I plan to ask my pharmacist about this afternoon. The geri dr. okayed that so I feel that he would have known right away if it was dangerous. However, I still want to know WHY it's involved.
We have taken Mother's most comfortable clothing and used all elastic waists to make it easier in dressing. She has lost weight enough to go down a size so her clothes are definitely not tight. The buttons didn't work well. She saw that one as a project! I now have a dress at home that buttoned down the front. She had a job pulling each of them off, and I have brought the dress home to sew them back on. Oh well, she felt useful in removing them! She is still constantly pulling at clothes as if uncomfortable. Strangest of all, her bras are looser than before with the loss of weight. Until about six weeks ago, she had refused to go without one...even slept in it. Now, she has a fit if they mention putting one on her because of tightness. This is strange to me. My son went to see her yesterday who hadn't been able to go since Sept. 5. He called me a few minutes after he arrived. He had stepped out of the room to get a breath. He couldn't believe the decline he saw and had to get over the shock before he went back in. She is now mumbling and it's very low. Very little is understandable. I can't help but question her vision and hearing. She had been angrily pulling her glasses off and throwing them down the hall last week. She has glaucoma and macular degeneration so vision was bad anyway. It seems that you have to talk very loud to her and often she takes your words as a similar word as if what she hears is muffled. I don't know if there is a loss in hearing and vision or if it's the confusion making her not pay attention. Here's a question for you! Even though I wonder, I hesitate to act. I don't really see much point in taking her to a doctor to check either at this point. What do you think?

 
Old 09-20-2008, 12:43 PM   #20
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Re: Advice please on beginnings of incontinence?

Martha,
Thanks for jumping in and adding a laugh to the conversation! I noticed you said that your mom was at the BBQ and talked about this on Labor Day, but she is now gone. That sounds like a rather fast progression. Was it? Love to hear your story.

 
Old 09-20-2008, 01:13 PM   #21
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Re: Advice please on beginnings of incontinence?

Labor Day 2007. She died Dec 29 that same year.

M

 
Old 09-21-2008, 11:00 AM   #22
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Re: Advice please on beginnings of incontinence?

Perhaps Elvis is alive and visiting nursing home You never know on planet alzheimer!!!

My first introduction to Alzheimer was back in the 70's when my grandmother was diagnosed. Since then several of my aunts and uncles have had it. Then I spent about 8 years working in a long term care facility with dementia patients. Next my Dad was diagnosed with Vascular dementia and then my Mom with Alzheimer. I didn't have much choice but to learn about the disease and with that the ailments of the elderly and the medications that go with them. I like you spend time on the internet now learning all I can.

I am not sure how much benefit hearing and eye examinations would do.... especially the hearing. It takes patient participation to do an adaquite hearing examination and it's obvious your Mom would not be able to participate. Both of my parents have hearing deficiencies but they can communicate to some degree. Dad has had his hearing aids for so long that he puts them in without thinking about it... with or without good batteries in them. It is not unusual for him to be sitting there trying to make sense out of his surroundings not being able to hear because the batteries are dead. Even with his hearing aids he has difficulties. We have had him to the hearing doctor and they have done all they can for him. Mom only got her hearing aid after her dementia began. She rarely, if ever, puts in her hearing aids and if we insist she wears it (she refuses to wear two) the first time we are not looking she will pull it out and stash it somewhere to be looked for later.

Mom using her hearing lost as an excuse for her inability to associate with others on a meaningful level. I know it's not the hearing because she is the same whether she is wearing her hearing aid or not. The basic problem is her inability to process what she hears which was documented in her cognitive testing as a critical deficiency. But on planet Alzheimer it can't be them.... it has to be something else.... so she blames her hearing. For Dad, having his hearing aids working does help. With his vascular dementia he has more ability to process what he hears even thought he forgets it almost immediately. I can explain something to him and sometimes he "gets it" and even gives me back what seems to be thoughtful answers. Then he ask the same question again. He processes just doesn't retain so hearing is helpful in the moment.

Mom and Dad both had cataract removal on both eyes before they became as bad as they are now. Then Mom went back and had Lasic surgery on both eyes. Her visions is excellent but Dad needs glasses. Again, he has worn them so long that they are second nature to him and he keeps them on.

Any examinations like this are confusion to dementia patients. You need to weigh the possibe benefits vs the angst and confusion not only the examination but the new appliance will have. It definitely depends on your Mom's temperment, level of cognitive awareness, and the potential benefits.

That is not a definite answer to your question but it is my thoughts. Maybe something there will be helpful. I am truly sorry that your Mom has declined so rapidly. I am sure my day will come as well. Right now our battle is keeping the lid on Mom's aggitation and each appointment just makes it worse.

Love, deb

Last edited by Gabriel; 09-21-2008 at 11:01 AM.

 
Old 09-22-2008, 08:45 AM   #23
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Re: Advice please on beginnings of incontinence?

"But on planet Alzheimer it can't be them.... it has to be something else...."......

Reading through all your posts is so interesting and I often see comments where I think "these people are living my life", none more so than the comment Deb made above! My MIL refuses point blank to accept anything is wrong with her, and always blames something or someone else!!!

I love the way you all deal with your situations with humour, something my husband and myself also try to do. I see the difference too with Vascular dementia and Alzheimers. My FIL (vascular) has been "stable" for the last 12 months or so, having had no more mini-strokes, whereas my MIL (Alz) definately is on a constant downhill spiral.

We are still struggling with water infections - and if I hear once more that she "really does drink a lot" I will scream! Like you have all said, you can be sat in the room with them for a couple of hours, and still only get a few sips down!

God bless you all for your humour and thoughts.

Tracey

 
Old 09-22-2008, 08:56 AM   #24
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Re: Advice please on beginnings of incontinence?

Deb,
Thanks again for help. Do you feel used yet? Got a new one for you this morning! As I've told you, mom spent five days at a geri-psyche unit a couple of weeks ago being evaluated for possible medication to help with confusion. Seroquel had caused havok. After many evaluations and tests, it was decided that no antipsychotic would be of benefit at this time and could prove more dangerous. They are still hoping that she will stabilize with her walking. She will walk about 15 steps fairly well still on a walker. Everything they considered also had the effect of making her less stable if she got up unexpectedly.
I have now entered the NH five days in a row to be hit with medication questions. On Tuesday afternoon, I found out that they had put her on depakote two days before. The next day, I received a message that they wanted to talk to me about medication. When I entered the nurse's office they already had an order ready to increase Xanax to four times the amount she was put on in geri-psyche. I would not okay it until they called the physician that had seen her. He absolutely refused. He agreed to trying the depakote for a while. I asked one male nurse upon this questioning," what would he do if this was his mother?" He quickly replied that if it was his mother, she wouldn't be there anyway. She needed 24 hour care. It cut through me like a knife, and I said nothing. By the next day, it had got to the second in line of the nurses on staff. She called me outside and apologized. She said that they were a 24 hour a day facility, and if he didn't like it, he didn't need to be on the staff. The next day another young female nurse complained that she was taking up too much time. She was the one who had requested the order for 4 times xanax dosage increase. She said that it was frustrating to the staff working eight hours to be constantly answering a beeper on her chair to make sure she was alright. As I followed her to the office, she was met by her superior. The nurse overheard the conversation. She told the nurse that it was her job to answer the alarms! When she saw the order, she couldn't believe the increase requested. That's when I refused, and they called geri-psyche. Both of these orders were written and the first administered for two days, the upped xanax had been given only one time when I was notified. Is it out of line to request to be notified before mother is put on new medication. I realize they know more about meds than I do. However, they really pushed the geri-psyche evaluation, but now don't want to abide by it. If she thinks she was frustrated, she should be standing in my shoes and watching the changes day by day only hoping you are doing the right thing. The worst part, from what I understand, these orders are okayed by the DON and signed by a doctor AFTER administration when he comes in once a month or so and signs all orders for medication that have been written without even knowing histories of patients. Is this the NORM?

 
Old 09-22-2008, 10:05 AM   #25
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Re: Advice please on beginnings of incontinence?

I can't answer anything about the drugs they are using. But there is one thing that jumps out at me in your letter.

The staff is there, paid, and trained, to answer the needs of every patient on their floor during their entire shift. Nothing needs to be done by the family. (like feeding, walking the patient etc.) You are paying good money to have her there to be cared for 24/7.

The thoughtless complaining remarks made so far by 2 staff members may have been the exeptions to the rule. But if it turns out that the general atmosphere there is 'getting the patient quiet so I can relax and not have to work" then the place needs to be investigated by the proper authorities.

From my experience with my mother, nothing medical was ever changed until AFTER the doctor had seen her and decided. Until then, the staff had to live with it.

I am sorry your situation is so hard. It has to get better!

Love,

Martha

 
Old 09-22-2008, 12:54 PM   #26
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Re: Advice please on beginnings of incontinence?

I completely agree with everything Martha said OCharlotte. NO medication could be given until it is signed off on by the physician..... especially the types of medications you are talking about. There are standing orders for things like Milk of Magnesia, tylenol, and other general meds for occassional use but otherwise the doctor has to be notified first and orders approved prior to administration.

As for the comments of the staff.... I am glad the administration heard what was being said to you about your Mom. I hope appropriate action was taken out of your range of hearing. That is uncalled for and if I had employed that staff member and heard that..... she would be out the door!!!! I fired more than one for less than that. Patient care is first propority and if you have to answer a buzzer 100 times a day.... you do it. I would have a discussion, even if you have to make an appointment, with the nursing administration about what has been happening. You will get a sense of what the top is thinking and what they don't know they can't fix. So don't go in angry or upset, just matter of fact and with logic and fact, and see what happens.

I would also make sure that they understand that NO new medication are to be given to your Mom until after you are notified and you want assurance that the geri physician has signed off on the order prior to administration. And keep your eyes open to what is going on. You will know if it is ok and these are just isolated incidence or if there is a pattern here.

Our state has a Department of Facility Services that monitor facilities. They have an anonymous tip line. You can file your complaint, without giving your name or the patient name, and they will investigate. Sometimes it's a pain when there is an honest misunderstanding but most times it is effective in alerting authorities to bad situations. Check out your state and see what is available, what the rules are, and what your options are.

If you find a pattern that you are not willing to put up with... move your Mom. That is not the only facility and I know there are good ones.

Love, deb

PS.... if I can be used to make a situation better or make a caregiver feel better or get better care for a patient... USE ME!

Last edited by Gabriel; 09-22-2008 at 12:55 PM.

 
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