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I am brand new to this site and don't know if this topic may have been explored or not. My 87 yo dad is home with my son caretaking 24/7 and my 85 yo mother is in long term care.

My mother has always had mental/behavioral issues. She was finally prescribed an antipsychotic about a year and a half ago. Now her mood is typically quite pleasant. With dementia, she requires nursing home care. At the home she continues to exhibit certain behaviors and languishes in bed 95+% of the time. They get her up for breakfast which she eats robustly as she is famished. She goes back to bed. They will get her up for lunch (unless she refuses) but she eats that inconsistently. Actually when she refused to eat the prepared meals, they were feeding her peanut butter and jelly sandwiches daily. She is up for 30 minutes after "lunch" to sit in the hallway near the nurses' station. My mother has a history of paranoia, dependency and isolation. Apparently, she will scream in the hallway or in group settings and demand to go to bed claiming fatigue and/or pain. (We learned this just yesterday). She is back in bed all afternoon. Bed at 6:00. Staff are supposed to get her up for dinner but often she "refuses" (their word). She seldom eats any significant portion of dinner. Although my mother underwent a complete swallowing evaluation at the nearby hospital, the speech therapist at the facility insists she requires ground food and thickened liquids. My mother can and will cough on command for attention. The speech therapist claims she will "aspirate". She never has. She did contract pneumonia over a year ago from a bronchial infection that was going through the place and during one meeting the speech therapist tried to link that bout of viral pneumonia to aspiration. The result was to have my mother undergo the evaluation at the hospital. The hospital evaluation says she does not need a special diet other than suggesting she might take a thickened liquid if she is fatigued. The ground food is completely unappealing. I believe I would probably refuse to eat it also. Thickened water is well...disgusting and she takes in a very limited amount of fluids as a result. In just the last 30 days she is down 5 lbs and has not been ill. Since her admission 15 months ago, she is down 12 lbs. My sister and I each bring her in a well balanced meal weekly. My son brings her out of there once a week for most of the day and she eats exceptionally well...no thickened liquids and no ground foods. If we were not feeding her, we believe her weight would be even less but of more concern is the lack of nutrients she is consuming. We have observed her coughing/gagging episodes to be behavioral. Not only can she stop but when told she may not be able to have "real" food she will readily stop. We understand it is easier for the facility to give her ground food. It can be more or less shoveled into her more quickly. (My mother is capable of feeding herself but likes to be infantalized with spoon feeding.) Granted having my mother feed herself takes longer and her hand/eye coordination is certainly not like it used to be so there is more spillage. The primary issue appears to be liability on the part of the facility. My mother's quality of life is diminished, her health is at risk but the nursing home is admittedly covered legally.

With this same cycle is the nearly total lack of stimulation being provided to her. We have repeatedly asked for the TV to be put on for some background noise and perhaps to spark some interest. It is not. They ask her. She says no to everything like a 2 yr old and the staff then fall back on having to "respect" her wishes. My mother has been deemed incompetent. She has a court appointed guardian. The facility feeds her PBJs, have her in diapers (she was not incontinent when this began) and bed bound but continue to ask her open ended questions which result in refusals consistent with an oppositional defiant disorder. My mother has an extremely dependent personality. She never drove a car, socialized, worked perhaps 10 yrs of her life and relied on my dad until June 2011 when he was seriously injured in a car crash (he was driving).

My sister and I attend the care meetings with the most recent, yesterday ergo my inquiry today. My mother has medication reviews by the mental health people but no therapy which she would refuse anyway. She needs someone to work with her on these behavioral and personality traits. She is capable of so much more and it is distressing to see her literally waste away. When she is out weekly; she is engaging and interacts well with us, eats very well, shows no fatigue and does not complain of pain. My mother sits up in her wheelchair (she refuses to walk) for sometimes up to 8 hours at a time. This has all been communicated to staff and her guardian. What can be done? Are there geriatric behavioral specialists who could develop an action plan? Ideas?

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I was my father caretaker 24/7 I actually moved into an apt with my father so I could be his caretaker and I noticed he would cough when eating only certain items. He did end up getting pneumonia and the 1st hosp he was in did a swallow study and it showed he did aspirate a bit and put him on a thickened diet, YUCK! He was moved to another hosp and they also did a swallow study but it did not show the same results. He had not eaten solids for a couple of weeks so they started him on a thickened diet. I stayed at the acute hosp with him 24/7 and fed him. I did notice he coughed a bit and had the nurse come watch. The nurse agreed with me and called in the speech therapist. She came in and they did yet another swallow study. This time then did notice that my father would not swallow all the food it sat in his throat. So he ended up back on the thickened diet. People tend to think dementia just affect a persons mind but it doesn't it also does affect other parts of the body and swallowing is one of them! They wanted my dad to go into a nursing home but I was against it. I was finally able to get one of his Drs to convince my siblings that home was the best place for him, and it was. He was happier at home and I was so lucky to be the one to care for him! I would check into moving your mother into a different nursing home. If they can't even bother to turn on the TV per your request what else are they not doing? The sad thing about nursing homes is they are understaffed and underpaid and though there are some fine people working in them they don;t have the time to spend with your mother. As a matter of fact you can see how much time a nurse and an aid are with patients. Remember the bottom line for nursing homes is to make money that is why they don't staff more people but what is minimally required by law! And even then I bet they not always have the right staff to patient ratio!!! I loved caring for my dad but know not everyone can do it for many reasons. Having someone line in is pretty expensive so more often then not that type of care is out of the question. Heck I couldn't even afford for someone to come sit with my dad so I could go to my own Dr appt. What I found thru my experience is that we seem to be unequipped to handle our aging parents care whether they are home or in a home. I found I didn't know much about having a parent with dementia and I think in this country we need to get the word out for those who will be taking care of us! It is so easy to believe our parents are being well taken care of even if by a family member. My sister was supose to be caring for my dad and she cleaned out his bank account and neglected him. She never even made sure he ate! When I got him he weighed 120 lbs and after 1 month he had gained 14 lbs!!! I can't say enough about how fulfilling it was for me to be my dads care giver but it was VERY hard. I have offered to care for my ex mother in law when she needs it because I just got so much joy from my dad.
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Some changes need to be made for sure and I understand that can be difficult with the aging especially with dementia. Mom deserves some modicum of pleasure; quality of life. She is not in hospice and actually her physical health has been fairly good. What a learning curve. I wish I found this website earlier and could have been more proactive.
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Elderlies, I would really, really consider moving to a different nursing home. It sounds like this one is very entrenched in their way of doing things and not able to consider doing anything differently just to give the residents a little happiness or pleasure in life. It seems like it's all about their liability and doing things by their protocols and never admitting they could be wrong.
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Castle, we are in a sister state. Do you know people in NE who specifically treat behavioral issues with this population? We have given many of the same suggestions you made to the staff at the facility. My sister inquired about visiting pets at the care meeting the day before my first post. We have given food lists (soft foods, easily digested) that she enjoys. We requested she be given yogurt instead on the non-nutritional puddings she wasn't eating. They apparently gave that a go a couple of days and then she said "no" so that stopped. My mom loves yogurt; perhaps she didn't care for a flavor or was simply being oppositional. Refusing food is a matter of control more than anything. The reason this has become of greater concern is her weight loss of 5 lbs in one month w/o being ill. Mom definitely has an appetite when we bring in meals or she goes out. It is expected behavior we will given her foods she enjoys so there are no refusals only anticipation.

The major concern though is her time in bed w/o any stimulation at all. Activities continues to ask her to join things in which she has no interest. Mom is not a social being. She is not religious at all. They had a volunteer come in to read her bible stories and then she declined the next time the volunteer came in. The religious slant is the staff's agenda not my mother's. Activities said they offer her mass and communion weekly. She declines. That would be expected behavior. Spending time with her even watching a show about animals, the news, cooking, gardening, art would go a distance. They are interests. My mother has some trouble with articulation. The other night though when I put on Tony Bennett's Duets I was telling her the artists who were singing with him one at a time. One of the first is Lady Gaga. She said she doesn't like Lady Gaga. (I didn't think she even knew who she was.) I asked why and she said she (Lady Gaga) was sensationalist. Now she had some difficulty spitting out the word but there was no mistaking it at all. I asked her if that had anything to do with the meat dress and she shook her head affirmatively with a look of distaste. She doesn't like Amy Winehouse but acknowledged she had a good voice. She likes Andrea Bocelli and piped up he has a Christmas album. She can hold a conversation at times.

We are requesting certain documents from her file such as the care plan, her schedule, med list, etc. and are requesting a meeting that would include other staff members so we work on the plan in a constructive manner. If there is someone objective who could come in to do an evaluation and make solid recommendations that would be great.
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I thank all of you for your input. Yes, the pureed foods are disgusting and she regularly refuses them. The speech therapist is the one who claims she requires them. The trouble is my mother will cough then gag on command if it gets her attention. She does it with the speech therapist and knows it is this woman's expectation from her. Granted she has a bit more difficulty with liquids as mom guzzles. She will look you straight in the eye and tell you she guzzles....then with a smile on her face take in too much. Simply having a hand on her beverage will stop it. Friday night I brought her in haddock and mashed potatoes with a V8 juice. Mom ate extremely well and she fed herself. When I was opening up the juice an LNA (who is particularly abrasive and incompetent) came rushing in to say it had to be thickened to nectar consistency. We all know V8 is a thicker liquid and the family had cleared that one with the doc. LNA Ratchett scurried off to write me up. Also brought in a cup of red velvet ice cream. Mom ate the entire cup herself holding the container in one hand as she got every last drop out. I was hoping for a taste but she said rather emphatically, "I don't share" The speech therapist will not listen to reason nor to the testing that was done. The speech therapist insisted she would aspirate. My mother never has. She underwent a swallowing eval at the hospital and it came out that she did not need a special diet. So on our time with her, we feed her foods she likes and she has no problem. We also have her feed herself unless it is an off day. There was very little spillage Friday night except for when the last of the ice cream melted down. It did take her about 45 mins to eat which is more time than the facility seems to allow. I was there with her in the dining room with 2 LNAs and about 5 residents in one room and 4 in the adjoining room. Except for the drone of the tv no one could see or hear, it was silent. There was no interaction between residents, no conversation. Some clicking of utensils and an LNA asking if a particular resident wanted juice or more potatoes. It was like something from a Robin Cook novel. The activities director insists there is socialization and conversation going on. There is not although it could be a perfect opportunity to discuss the weather, news, etc.

My sister and I are asking for mom to have "therapy" in some manner that is not called therapy. She has interests and we will provide whatever is necessary to stimulate her. Castle, you are right on target. Friday night I brought her in a larger picture album and after dinner we put pics in it together from Christmas and Thanksgiving. I had her identify people things in the background, her likes and dislikes of certain pics. etc. Previously I brought in a small album with her b-day pics from June. That kept disappearing. I would find it and put it back out on her commode. It wound up in the bottom of a drawer one time. Friday night I searched her space. It was stuck up on the top of a closet between some old magazines I brought in so she could see the pictures. Now there is the larger album on her tray with the pictures consolidated and plenty of room for more. It is a starting point for any visitor whether a professional or companion type.

Actually my dad did more caretaking for my mother. He did the groceries, laundry and catered to her during their elder years together. My mother was primarily a homemaker until the mid 60's when she went to work for about a decade. She had very high level positions as executive secretary/admin assistant. After my dad retired 25 yrs ago shopping was her primary occupation and hoarding. From the mid 90's to 2009 dad took care of mom. In 2009 she claimed he had abused her and we had to separate them for his safety. The only abuse would have been mom on dad. I had dad live with me for 2 yrs and his health improved immensely. Mom refused to allow any of us into the house and was reclusive. I set up Meals on Wheels to have someone there to give us feedback and check on her welfare. We would do some yardwork but she would not answer the door for us. She tried to refuse Meals on Wheels but I wouldn't allow it to discontinue. Mom got along extremely well with Andy the carrier after a week or so and relied on him to bring and take out her mail etc. Dad started going over to the house daily to be with my mom and to clear out things she had hoarded. He did a wonder job at age 84. In Dec 2009 mom was not paying bills. She allowed dad to return and he took care of her. We finally got her out to see a doc. Surprisingly she had remained in decent health. Dad courted her for the 6 months prior bringing her cheese, shrimp, cheesecake and other goodies. As I said mom has always been dependent on dad.

We had to go the route of having a guardian appointed. Mom had been in rehab. She refused to go with the program and then she refused to leave. They basically kicked her out. We tried her at home and within a couple of days she was behaving in a psychotic manner, screaming like a banshee for hours and hours. Come to find out the last nursing home had her on a huge dose of percocets. She may have actually been withdrawing. They even sent her home with 2 blister packs of them both started. Months later when I saw the pharmacy bills the doc had prescribed a quantity and 2 weeks later another 100 for and 84 yo woman. Anyway she wound up in the hospital. We could not do a POA or pursue guardianship given her history of paranoia and just plain nastiness towards my sister and I (back to childhood). I petitioned to have her deemed incompetent and to have a guardian appointed. This took place rather quickly. Mom was placed in a facility where she decompensated and was then placed in the geriatric psych unit. 12/11 mom was placed in long term care where she remains.
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That pureed food is an insult - they even take soft foods and puree them together, rendering palatable food disgusting! The thickened water is horrid! Doubt I'd drink it in a desert.

Find out if they have a speech therapist - they know how to watch people chew and swallow, to train them to do so properly when impaired. Without a prescription from a speech therapist or doctor to put her on pureed foods may be illegal, elder abuse in my mind. I hope you can find someone who will agree. someone whose opinion counts. Keep trying. Good luck.
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Sorry again, this is the last time! But I had experience caring for a woman with multiple disabilities at home, who was then put into the nursing home and they changed her feeding to soft - I spoke up, and wrote them a note, and also told some nice things about her personality, and helped them understand that she only swore (like a trooper!) when she was nervous - it seemed to help the staff look more closely at her, and many were more openly friendly, and took on the challenge of helping her more - And if you hired a therapist or support coach to visit and spend a little time to get to know her on a regular basis, after your mom got comfortable with her, she could again gradually, tie her in to activities in the nursing home, as long as she stuck with your mom's pace. Eventually, your mom could fit in better without therapy help. Best of luck finding solutions, it sounds as if your concerns are important, and there may be other ways of finding help!
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You can actually refuse the pureed diet if she really does not need it. Thickened liquids may be very helpful to lung health, and some things taste better than others. Some people actually like the prethickened lemon-flaoverd water, but another option is the Frazier protocol where plain water is given ad lib between meals after good oral hygiene. My dad did well with thickened liquids; they never actually even did a swallow study, because the only times he was ill with aspiration was after vomiting; after one episode of that they kept him on purees for a month but we got him back on regular food that he liked better just as a quality of life thing.

And, some nursing homes are better than others for any given set of personality quirks. Maybe it would pay to look around. Maybe even a smaller board and care if her medical issues are not too severe for it would be better.
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Sorry, I left out one of the most important ones - after caregiving for her husband, your mom likely has caregiving stories to tell, and would likely respond to someone else, who also tried to help a husband, or provide care, who could appreciate the worries, efforts, struggles. Something like this list helps us who listen and contribute...... :)
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Oh my! What part of the country are you in? I live in Mass - that's the kind of intervention I kind of trained myself to do - and it is not often planned at all, especially not for someone in a nursing home - their staff are not trained, and those that have such skills are scheduled on shifts that change. Sounds like the food stuff tends to confuse the issue.

But instead of getting caught in either/or solutions - you might insist on a gradual plan, to re-introduce some solid foods, and over a month or so, increase the number of solids. Similar focus to rebuild her interests. What used to fill her days, and her conversations? Set up a regular visitor for her - I hate it when they offer a "therapist" and expect agreement in advance - it often doesn't work that way, especially for elders, as many have not learned to trust therapists. But the same plan can work if someone is acclimated gradually, without being asked to agree, just have the guardian sign to try having an Occupational Therapist visit regularly, or an elder care therapist as you seek, in weekly half hour visits to her room - without calling it therapy to her. Just add some company, and see if after a few visits, she likes it and begins to respond. Nursing home staff can't do that well. I've done that with several resigned patients - I took photos of a client's childhood home and brought them in for her. I had tea with her daily, and always left her to pour, which she saw as her role and it was part of her lifestyle. She was an animal lover, as am I, so I brought my dog, who was a better therapist than I was - an obedient and quiet dog. I brought in a small CD player, and listened sometimes to one or two CDs of piano music she liked. Varied activities, and also watched her energy level and affirmed any participaton. And just laughed. Brought small jokes, listened to any pieces of stories she told - gradual affirmation and companionship helped her whole demeanor over time, as you suspect would help your mom.

Seems to me, you might try hiring a weekly health aide, supervised by a rehab therapist, like OT - to just gradually keep her company. Or as you think, some therapist - ask your question of therapists. Did she used to cook? Read? Draw? Have someone interested in such things, who can be trained also not to overwhelm your mom, but spend a lot of quiet, gentle time, noting the contribution your mom makes, without rushing.

That person can also express delight if your mom sits up, stays awake and chats, for longer periods. Maybe start their own wall hanging photo display, and gradually suggest your mom add photos of her children, or make a project of trying to add some names to a photo album. Maybe be there when you pick your mom up, so she gets to know you and your brother approve. One caution - if someone has alzheimers, they need the repetition - I did a great job once with such a person, but I left for a week, and returned, and she forgot who I was, and when I looked upset and tried to insist, she turned me into public enemy number 1, and made such a fuss, I stopped working with her. Now that I 'm more aware that can happen, I would remember that any absence needs to be followed by a bit of time to re-engage!

Many women especially, will agree to do something for others, but after a lifetime of being taught not to focus on themselves, so will refuse things offered for their benefit, but will do the same task when told it will help others.

If those things don't work, I would question the meds - and even try to get a plan to gradually reduce the meds anyway. I know this is gradual stuff, but maybe try to talk with those who do Occupational Therapy for elders. The sentence to keep saying, over and over everywhere, is that you feely your mom is steadily losing skills that she had before the nursing home.

You mention a guardian - who must have not realized this was happening, or know any alternative approaches. Important to just keep stating your worry that she is losing skills because everyone is focused on her medical issues, while she needs some to help her bridge the nursing home life emotionally and mentally, and needs someone with the gradual approaches offered by OTs, who need to invent an individual plan to meet her where she is. It would cost you, but should show some effects within a few months, and if needed you can then figure out how to find someone cheaper to be maintain the attention.
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