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Old 07-22-2012, 07:25 PM   #1
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questions from a newbie

Hi, just wanted to ask a few questions. my mom is 81 years old and has symptoms of dementia/alzheimers. She was recently diagnosed by a GP as having "Dementia of the Alzheimer's type, with early onset, uncomplicated." My mom also has had several spinal fusions, so she walks very unsteadily with a walker. Over the past six months my mom's condition has worsened dramatically, she is now completely incontinent, doesn't speak very much, cannot seem to handle talking on the phone, and has alot more confusion. I recently relocated her to a new assisted living facility nearer to where I live, and I think that the transition has been rough. I also wonder if it's the best thing for her. She cannot move around, ie, leave the room on her own, or even use the bathroom on her own. She depends completely on the aides (or me) for help. She does not know how to call for help (wrist bracelet). She cannot really communicate very well at all, and seems unaware that she does not speak very much at all. She still recognizes me, enjoys seeing dogs and likes going for rides. my question is, should I take her to a neurologist and try to get a more specific diagnosis? Secondly, she was placed on a anti-depressant by the nurse in the previous assisted living place. however, I'm wondering if this is contributing to her incontinence. I know that it is a symptom of dementia, but I'm wondering if it is not aggravating her incontinence, or causing it. I guess the bottom line is that I don't think she is safe being in a room by herself and I'm wondering about moving her again. The AL place has a memory care unit downstairs (no beds available now) so that is an option. I'm just worried about how to best take care of her. thanks for any advice

 
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Old 07-22-2012, 08:45 PM   #2
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Re: questions from a newbie

I am very sorry for the issues you are having with your mom. I usually post on the back board, but also had a mother who just died in May after a ten year struggle with dementia.

I'll let some of the regulars on this board handle your more technical questions. The diagnosis you received is almost identical to the one we received for my mother from a neurologist. I think it would be a good idea to take her to a neurologist if you can do so without upsetting your mom too much. I would personally want that anti-depressant run by a doctor of some sort that is familiar with your mom's case.

Did you notice any change in your mom after the surgeries she has had? My mother's problems began after a knee replacement surgery she had in 1998. She was never the same after that surgery. Some people can have a bad response to the general anesthetic...and it may at least be a contributor to her issues.

Also, the incontinence could be a problem with a spinal nerve. I don't know when she had her fusions or if they involved the lumbar area, but without going into detail, just know that an issue with the lower lumbar spinal nerves can result in incontinence of bladder/bowel or both.

It sounds like your mom needs more assistance than is being provided in her new facility. A memory care unit would provide more structure to her day, keep her more involved in appropriate activities and provide more care than an assisted living facility where she is probably alone in her own apartment most of the time.

There are some wonderful "veterans" on this board who I know will be able to offer you some guidance. Good luck. I certainly empathize with your predicament.

 
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Old 07-22-2012, 10:46 PM   #3
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Re: questions from a newbie

Welcome to the board Gagilbertson Sorry you are dealing with this disease but glad found us.

If possible, without too much upset of Mom, I would get a diagnosis from a neurologist or memory assessment clinic. Most general physicians, when they recognize dementia, will usually put the Alzheimer's label on it... or just call it dementia. They are not trained in the subtle differences as a neurologist might be. My Dad was misdiagnosed for years with Alzheimer's when in fact he had Vascular Dementia. The neurologist might be able to answer many more of your questions as well.

It would help to have a better time line of your Mom's medical. teteri is right that anesthesia can complicate dementia. It doesn't cause it but it can definitely make the symptoms worse. Usually this is apparent as they come out of anesthesia or very soon there after. If the incontinence is a result of the surgery then there should be a correlation in time there as well.

If the changes came about the time she was moved then more than likely the move was the culprit. The stress of a new environment coupled with the loss of familiar territory can make the symptoms seem to be worse. Some of this is just the new environment. Before she was using her long term memory but without the familiarity she had trouble functioning in the new surroundings. This is most common when they move from home to a facility but can happen with any move.

I doubt the incontinence is caused by an antidepressant but you might contact your pharmacist and ask him this question. He is more familiar with the drug side effects than her physician. He can check her med list for any possible side effects that would lead to the incontinence. It could be caused by the surgery as well... or it might just be a progression of her dementia.

I totally agree with your fear that she is not safe in the AL room. I had much the same concern for Mom. I did move my Mom to a locked facility. Beyond the locked feature, there is usually a smaller ratio of patients to care staff in a smaller unit where they do get more one on one attention. Many times they stay in the commons area where they can be closely watched. Instead of being "stuck" in her room all day, Mom is now out of her room with other residents and staff most of the day. A good rule of thumb that I have heard a number of time lately is... if you are considering a move then it is time for that move. We do tend to lag behind the needs of our loved ones with dementia I know I did!!

Hopefully some of this will help and please continue to ask questions and let us know how Mom is doing

Love, deb

 
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Old 07-23-2012, 07:31 AM   #4
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Re: questions from a newbie

Sorry that your Mom has dementia.
Yes please ask the neurologist for further specific diagnosis. Also she is 81 so it is unlikely "early onset". Usually she has some symtoms of dementia already but GP does not have the tool to test for the specific diagnosis. GPs always like to tell you they know enough but only a specialist knows the best.
Incontinence is part of dementia. It is not due to antidepressant. Antidepressant helps her so she should take it. Sorry that the memory unit has no bed but Mom needs to go to the memory unit so she is cared for properly. No, she cannot be alone. But a memory unit is group care so if you have money, hiring a personal caregiver to be there part-time is a good idea.
The symtoms she has is typical of dementia but it seems she is in moderate/severe stage. No talking is severe stage of Alzheimer's. But it could be any other types of dementia.

Hugs,
Nina

Last edited by ninamarc; 07-23-2012 at 07:33 AM.

 
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Old 07-23-2012, 07:35 AM   #5
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Re: questions from a newbie

Hi Teteri, thanks for your reply! My mom had several spinal fusions; the last was at least five years ago. Since the last fusion, which basically fused her neck vertebrae, she was unable to regain her balance and was very unsteady on her feet. The incontinence started about six months ago, and seemed to be related to her having a UTI. However, other things were going on, for example, she lost a cherished (paid) caregiver, who had to move and could no longer work with her. However, I'm not sure if there is any causal link. I was concerned because her stools are almost always liquid, and I'm not sure what causes this. I've looked online and this could be related to an obstruction, maybe because she is constantly being given Colace, or just the way her body is working.
I did not indicate that I initially moved her to a memory care unit with a locked ward, and I pulled her out after a week, because I did not like the atmosphere-- alot of people with more severe dementia, and I didn't like the environment. most people are "checked out" and there was little interaction. However, my mom seems to know what's going on, is not a flight risk, but she's very uncommunicative, also not very social, but with a sweet disposition. Perhaps I acted too fast. I really liked the memory care unit in the new place, so I will begin making inquiries there. thanks again!

 
Old 07-23-2012, 07:47 AM   #6
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Re: questions from a newbie

Thanks deb. in My reply to Teteri I indicated that my mom's last surgery was a while ago, so what's going on now seems like it's progression of the dementia. I also mentioned that I had her in a memory care unit which I didn't like, so after only a week I moved her to another smaller facility located nearby, and put her in AL because no beds available in the memory care. I agree that the memory care is what she needs, and perhaps I made the wrong decision pulling her so quickly from where she was, but I just didn't like the place. i will work more with the current facility to get her on waiting list for the Memory Care.

 
Old 07-23-2012, 07:53 AM   #7
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Re: questions from a newbie

Hi Nina, thanks and yes will work on getting her to a neurologist. I think that you are right that she has some symptoms that are moderate/severe and needs to be in a memory care unit. I will start working on this... will also think about hiring a caregiver as well. thank you again!

 
Old 07-23-2012, 07:57 AM   #8
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Re: questions from a newbie

There are different kinds of memory unit. Sometimes a residential care can offer memory unit for the people with mid-stage to moderate stage like an AL. Then for severe stage or very sick patients, the memory unit may have an area/wing for sicker people. Where my late FIL was is a home for memory impaired only and there are 2 wings. I don't like the ones that have mixed patients with all kinds of sickness. A place for just memory impaired is good enough.
However, not all homes are equal. Some skilled-care homes offer memory unit but are very much like a hospital. My late FIL died in the sicker wing in July. But he had a good time in the other wing for at least 1 year and half. He had Alzheimer's and he was 91.

One more thing: the patient with dementia should not be moved around too many times - the trauma can make her decline worse. Try to move her to the right place. Also she needs to get used to the new place so give her some time like a few weeks to 2 months.

One reason my late FIL went to the NH was that he went to the hospital too many times back home and he hated hospitalization. He never had to live in the hospital again when he lived in the NH. He was there for almost 2 years; we tried to keep him at home as much as possible but it was difficult. He liked the NH because he thought he "worked" there.

Take care,
Nina

Last edited by ninamarc; 07-23-2012 at 08:00 AM.

 
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Old 07-23-2012, 01:09 PM   #9
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Re: questions from a newbie

hi and welcome. sorry you have to go through this. your mom should not be alone and seeing a dr may help. this a horrible and frustrating disease. keep posting and hugs to you.

 
Old 07-23-2012, 07:13 PM   #10
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Re: questions from a newbie

Not all Memory Care Units are created equally Many feel that "Mom is not ready" until she is so far along that you do end up with the worst of the worst because of the more intense care level.... when in fact there are many more in AL that would benefit from the smaller units and more intense care level. Mom and Dad were the most cognitively aware when they arrived at the locked unit... but both were very much a risk for wandering. Now, three years later, Mom is one of "those". Yet there are some in AL that are worse than Mom but the families just can't bring themselves to move them. These would definitely benefit from the additional care. Perhaps at the time Mom did not fit in the unit she was in, but now she is more ready for the one that is available. Remember, there are no mistakes in this journey. There are decisions that are subject to change

I did pick up you saying Mom had a UTI about the time she became incontinent. This could very well have been the catalyst that caused her cognition to slip into incontinence. Mom's first round of chronic repeated UTI lead to her loss of speech (three years ago) and her last round of chronic repeated UTI lead to her loss of ambulation (the first of June). It is amazing what a UTI can do.... and it is never good. This is why proper cleaning technique and hydration is so very important.

Changes in physical living space and change of care givers can cause set backs as well. It could be a factor as well as the UTI. So each move needs to be considered based on the benefits and the drawbacks. I have moved Mom twice (home to AL and then Memory care). Each did cause a set back in her cognition but each was necessary for her safety and well being. As I said before there are no mistakes... just decisions that are subject to change. As their cognition decreases they need different levels of care. As time goes on the perfect placement can become problematic. We have to do what is right at the time.

Love, deb

 
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