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My mother-in-law has frontal temporal dementia with Parkinsonism. She is also suffering from depression, anxiety, and obsessive compulsory behavior. Her change in behavior happens when she has experienced fecal incontinence. The doctor prescribed lax-a-day, Pms-Docusate Calcium and suggested metamusil. We did everything according to what the Dr. suggested but she still have this faceal incontinence problem. We applied Adult Glycerin suppositories but she just fart it back out or she would use her hand to take it out.
What should I do? Thanks

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Thank you cwillie for the support. The nurse told me to keep on doing what works. So I am going to stick with the routine until something changes. I went to a Alzheimer Support Group gathering last night and realized how lucky I am. All of the participants in that meeting are elderly females (except me, I am totally outnumbered! ;-) who looked after their husband until they cannot manage. One participant just applied for a placement last year and she is 79. They experienced all the "horrible" experiences I encountered and continue to show their love and care towards their loved one. I am happy I went and learned a lot from their passion. This strengthens my belief that I am doing the right thing by refusing to put my mother-in-law in the emergency queue.
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Hi JT, just following up on a private message. Docusate sodium is smaller than docusate calcium and works better in my opinion, but if she is having trouble swallowing you may be better off to stick with the lax-a-day or generic equivalent, as it can be mixed into almost anything, I've even put it into a bowl of soup.
I understand exactly what you are saying when you talk about your case manager pushing you to put your mom into the queue for care, the same thing happened to me. When my mom first took her turn for the worse i begged for answers, for more help, for a nurse at least to come out and give me some guidance. My case manager looked at me like I was talking crazy and informed me that she WAS a nurse. Her personal belief that I should put mom in a nursing home coloured her judgment, and when I finally broke down and admitted I couldn't do it anymore she found my mom a placement within weeks. After an agonizing night of worry and second guessing myself I declined the placement, and was finally able to get supports in place to keep my mom at home. This website, although American, is a wonderful resource and helped me immensely. I'm glad you were able to get a nurse to come into your home, just keep pushing them to continue to cover your needs. Only you know if you can handle having your mom with you, don't let some bureaucrat talk you into going against your best judgment!!!
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Make sure she eats foods with fiber, ask her doctor or pharmacist about a fiber supplement, make sure she drinks plenty. Provide 'wet' wipes for clean up after an incontinent episode. Try using a toileting schedule, ask her or take her to the bathroom after meals, try every hour sitting her on the commode, then you may be able to extend the time she goes to the bathroom. Keep a journal, maybe you can get an idea of what food she eats and when she goes; this pattern may help you set a toileting schedule that works better for her. Good luck
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I don't have any advice for you but wanted to share my concern and respect for you and your wife's dedication to caring for your MiL, and especially for attempting to maintain and integrate your own cultural practices.

I do understand your reluctance to use a facility; it's my understanding that the Chinese and some other ethnicities have for centuries cared for elders in their homes rather than use facility placements. To me, that's very admirable.

As to all the medicines, I'm not familiar with them but just wonder if time-honored Chinese practices and good diet might be helpful for the bowel issues.

I think the reason your MIL feels the need for so many baths is probably because of the discomfort in her rectal area and the sense that things just aren't working properly there.
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nothing new to add to the advice but if she is admitted to hospital at any time and you feel she needs placement try and make that directly from hospital. i am not familiar with the canadian healthcare system but that is what i would try.
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P.S. Avoid constipation by all means, but diarrhea, loose stools are not good.
That is why the applesauce with easily digestible chia seeds may work.
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John Shiapi posts regularly and can be found here on aging care site. He recommends chia seeds mixed with applesauce to comfortably regulate the daily bowel habits (necessary with Parkinson's). Look him up, he is an amazing contributor, he has other ideas for Parkinson's. The medications may be too much. Your MIL may be extremely uncomfortable and need Tucks wipes or Ointment to calm the area. Look up "Sitz baths" or "Bidet" cleansing. I don't know what these are called in Canada. Her behavior may change once she is more comfortable.
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Thank you all the the valuable comments. It is our intention to keep my mother-in-law with us until it is impossible for us to look after her. It looks like this day is fast approaching. My wife and I know that it is better to put her in the emergency queue right away. I had this experience last year with my mother when she needs to be put in that emergency queue after the doctor found hairline fracture in her hip. My mother is going to be 94 this June. She always lived with me until last year. She still have good memory and reflex at that time. Since she was sent to the long term care facility, her memory is fading fast and her mobility is now limited due to her hip problem. I am worried that with my mother-in-law's mental condition, she will have a very difficult time to adjust to life at the long-term care facility. Hence my hesitation to put her name in the emergency queue. She tried to commit suicide 5 years ago. We all thought that it was due to her depression. It took almost a year to find out that she suffered from Frontal-Temporal Dementia. The Dr. told us at that time the average life span is around 8 years for FTD patients. We decided at that time to make sure she will spend her remaining years in a happy surrounding. She still can recognize our faces (not names) and looks happy to be with us. She would come to our room to watch TV with us even she does not understand a word of English. We subscribed to Chinese TV service and put a TV in her room. However, whenever my wife is around, she would come and watch TV with us. We know there will come a time that she needs to be alone in the long-term care facility but wish to delay that palliative care decision as long as possible until the time when we can no longer manage her.
This morning, we heard her going into her washroom at 5am. This is not her regular routine because she seldom wakes up at night. My wife and I jumped up to check on her. We are so happy to see that she finally had her faecal incontinence issue eased up a bit. The stool is very hard and not much, but at least it starts coming out by itself without my wife's assistance. It did make a bit of mess in her washroom because she used her hand to find out whether there are stool in her bum and then used her hand to touch quite a few thing in the washroom. I am fine with cleaning the washroom because we are happy for her. I booked an appointment to see the Dr. this afternoon. Tonight, depending on what the Dr. suggests, we may decide on whether to put her in that emergency queue.
Thank you all for providing me with the comments and allow me to share my concerns with all of you.
James
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If the galantamine + memantine does not improve cognitive function, there is really no point in continuing those drugs. Ask the MD
Apo-Ditiasz, Apo-Atorvastatin, Sandoz-Pantoprazole, Paradaxa suggests she has high blood pressure, high cholesterol, stomach issues and clotting problems. Again, be sure she really needs all those meds by reviewing them with the MD. Ask the pharmacy to run a drug interaction check on those combined drugs. If red flags pop up, call the MD and hold him accountable. Too many drugs can actually make things worse. Six different meds all at once would worry me.
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There will be long term care available with much shorter waiting lists if you are willing to place her farther away... I assume you are in a large urban centre? She can still be put on a list to transfer closer to home when an opening becomes available.

I would be cautious in using metamucil, if she doesn't drink enough it will have the opposite effect to what you need. Try giving her the docusate twice a day and add in a stimulant laxative like milk of magnesia every other day. The polyethelene glycol (lax a day) worked for us for a while, but it is essentially doing the same job as the docusate at a much higher price. Make sure she gets a good diet of fruits, veggies and whole grains, and push the fluids!!!
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JT, if you have not already found the ftdsupportforum site, please check it out. There are members there from Canada and around the world. Look at the the website for University of California San Francisco for a list of medications that are appropriate for FTD, or not. You will find links on the ftd support site. Everything is up for discussion there and everyone is familiar with FTD.
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If I may, I'm going to suggest getting her on that emergency queue. Also in Canada here, and the waiting lists are horrid. The only new facilities being built are the pillagers.. the ones that start at 1900/mo because they get 3 square meals. Highway robbery.
Please get her in a facility - you and your wife are now doing a lot more than you should be in her care, and its only going to intensify.
My opinion only that is, but from all I've read, seen and am going through, some one has to look to the caregiver(s) at some point. Take care.
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Thank you Pam for the response. I am from Canada. We put her in the queue waiting for a long term care facility last year. The waiting list is long and I was told that it would take up to 5 years before my mother-in-law can get into a long term care facility. She already been prescribed with all kinds of medication.
Pat-galantamine, Apo-Ditiasz, Apo-Atorvastatin, Sandoz-Pantoprazole, Paradaxa, Ramipril (changed to Pms-Memantine 2 weeks ago), Auro-Mirtazapine. However, I was told by the doctor that all these drugs are not effective for frontal-temporal dementia patient.
Her faecal incontinence problem is more related to constipation (hard stool). She had been to the doctor 3 times in the last 2 weeks but the result is minimal. She does not know how to bath and my wife bath her every day. I lost my job last year and became her primary care giver (except bathing, changing clothes, and toilet function which are done by either herself or my wife). She was a socially active person before your FTD condition. She attempted suicide 5 years ago when she realized a change in her physical condition. We, including the doctors, all thought she was suffering from depression at that time. I was only a year after that she was diagnosed as suffering from FTD. She is obsessed with tidiness and cleanliness. She used to be very conscious of her personal image. Her condition just changed drastically a months ago when she had the constipation problem. She would take off her clothes (a new behavior) and go into the washroom trying to take a bath. The problem is she does not know how to bath anymore. My wife bathes her every night when she comes home from work. She turns on the faucet and looks at the water that flows out from the tap. I mentioned her latest condition to the doctor and was told there is nothing they could do. Yes, long term care is a solution for us. If I told the public health care nurse that I can no longer look after my mother-in-law, she would put us in the emergency queue. We could get her into the first available long-term care facility within 50km limit from our home within a few months. However, I would like to put her in a facility that understands my mother-in-law's cultural needs. Hence the long waiting list. I told my wife that my mother-in-law raises her in a comfortable surroundings and it is now our turn to look after her if we are capable. May be my job lost is a sign that we should try to provide for my mother-in-law until when we can no longer capable. I am Catholics and really believe in this. That's why I post my problem here hoping that someone can provide me with some advice on how to get through this difficult time.
Thanks
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If she cannot hold her bowel, she does not need stool softeners. She does need some medication for her behaviors. You might want to think about getting her to a Nursing Home soon. What you are doing now is not good for her.
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