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orangeblossom Asked July 2013

Mom in NH w/Dementia and very non-compliant. How to get her to behave?

Mom's dementia is getting progressively worse. She cannot seem to remember what you told her less than a minute ago. She is on very strong pain meds, blood pressure and anti-depressant meds and an antibiotic. Sedatives would just compound the systemic depressive effects of the pain meds so we are not willing to give her sedatives on a regular basis. The immediate problem is that she has a 'venous stasis' ulcer on her lower leg, and both legs are quite swollen. They clean and dress the wound every day and wrap her leg in ace banadages, which she invariably unravels. Even if they tape the edges she will pick them off. Now the wound became infected (Mersa virus?) and they are cleaning hands disinfecting everything she touches. Wound care specialist came in Wednesday and put a special bandage and dressing and some kind of boot, which supposedly is harder to remove. 2 hours later it was gone! Nurse was very upset with her and Mom swore up and down she never touched a thing and the 'doctor had just come in and removed it'! This is so typical of everything she says and does - she is never at fault - and truly believes that she is not misbehaving. We all realize it's the dementia, but it is so frustrating. She is supposed to keep her legs elevated, but 'walks' around all day paddling in her wheel chair. She will not stay still and elevate her legs during the day. You can't even get her to stay put in a lounging chair. I suggested to the nurse that they attach the leg rests onto the wheel chair and elevate her feet for at least 2 hours a time and just keep an eye on her - they can see her in the community room by the nurses station most of the day. The nurse said she is going to talk about it to PT tomorrow. Unfortuanately they don't have a trapeze pulley, or they could have hooked it up over her bed to keep her legs elevated (that was my 92 y/o Uncle' suggestion - he's pretty sharp!). There is probably no viable solution to this issue, but thought I would toss it out and see if anyone else has any creative ideas.

orangeblossom Jul 2013
Dear Kabeena, Thank you for your suggestions. Right now, Mom is alert enough to socialize. When her mind gets totally foggy, the first 2 suggestions might work, so I will keep those in reseverve. As for the mittens, I can hear her kicking up a storm over it! She is very strong-willed. I can mention this to the nurses, but I have a feeling they will consider it too much like restraints.

Kabeeena Jul 2013
One thing the nursing home used to keep my mom busy was give her a small pile of towels to "fold". Not the bath size towels, more like hand towel size. I say "fold" because they end up more like rolled up and bundled, but she seemed to like doing it and would "fold" them over and over.

They also gave her blank sheets of paper and watercolor markers and she would spend quite a bit of time "writing".

The hospital put these "mittens" on her hands to keep her from pulling out her lV's. They looked like soft puffy boxing gloves with no thumbs. They were only mildly annoying for her for a short time and then she got used to them.

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Stressed52 Jul 2013
I have been wondering what a doctor might prescribe for my mother to calm her during her times of agitation and I think I will read up on some of the medications you all have mentioned. Many of them are medications I took for epilepsy in the past. I thank you all for the information you impart, if it does not help the person asking the question I believe it may help another, reading the replies!

orangeblossom Jul 2013
Wow Ronald, that was amazing! Everybody should take a look at that link! If I could get that going for Mom, maybe she would stay put in the wheelchair and take her mind off having her legs raised for an hour or so. Either that or she would try to break out of it and start dancing! Could go either way - LOL!

ronaldwgumbs Jul 2013
I'd put the iPod and look at her reaction. Henry does not know how to operate an iPod, neither do I. Watch the video and use your own judgment. Good luck!

orangeblossom Jul 2013
Reverse, thank you for your comments. Could you please tell me what the benefit of seeing a neuroligist would be? You can post me separately to give me the name if you are in NJ. I researched Depakote, and it does not sound like Mom could handle the side effects. Edema is one of them and that is her current problem with the legs. Her bed is very low, no side bars, and so far she has not needed the mat on the floor (barely room for that anyway).

Reverseroles Jul 2013
Restraints are also not used in our State, against the law now. They even put a mattress on the floor in nursing homes with no sidebars allowed. I would get her to a neurologist and as I said a million times on here, depakote was a life saver for my Mom during this stage. My Mom is also on an antidepressant and has been since before she had dementia. Back then she said "why didnt they have this stuff years ago?" She loved it as she always lived with anxiety before that. Find a great Neuro, ours was the head of the Neuro dept and knew his stuff. Good Luck and remember, its not their fault.

orangeblossom Jul 2013
Momskeeper, your perspective is rather different than mine, and perhaps it does sound like I try too hard to micro-manage things. It's hard for me to see it that way, because like everyone else, we want the best for our parents and stress when we can't 'fix' it. I know you have had your share of stress with Dad and more to come with your Mom. Sure, my Mom doesn't have a problem with it. According to her, her legs are fine, and she should be ready to go home 'next week' and take up independent self-care, cooking, & housekeeping like she never missed a beat! LOL.
But you are right in that I do spend a lot of time worrying over every issue and searching for solutions which can be mentally exhausting leading to physical exhaustion. When I get that conference at the NH, I will lean on them a little harder to come up with the solutions that I should not have to be dealing with. And I will try to "chill out" a little more. Thank you.

momskeeper Jul 2013
Don't worry about what you can't control. My Moms' mind has started going this year. Most of the time she can't remember where she is at and telling her a dozen times a day does no good. Just irritates me. Dad was in a NH for several years. He was always on the go. They tied him in bed at night. When they checked on him he would still be tied but out of the bed. Sometimes hanging by his ties. I know you are concerned about your Mom but tell the Doctor and the NH staff to figure out something. They are supposed to be the experts. Sounds like your Mom doesn't have a problem with it. Relax and enjoy the time you have with her. You can't fix everything life throws at you so enjoy the good times and let the bad slide by.

orangeblossom Jul 2013
LOL, Overjoy - I have threatened to put mittens on her if she doesn't behave ! I will definitely mention those gloves, and Mom wears long sleeve shirts all the time so she would not be so aware of the ties. A tray table might work as a deterrent,too. Only drawback to both is removing them for bathroom time - we'll see. I also like the idea of seating her against the wall, but that would only work at mealtimes - most of the day she is usually paddling herself all over the place 'walking' around the NH. Thanks so much for your suggestions.

Crispy - I found the info about the 3M-Vetrap Bandaging tape and printed it out. Also found a NEVSCO-northeast supplier. Printed out and will try to be at the NH for the next wound care specialist visit.

overjoy Jul 2013
There are special gloves that make it impossible for people to mess with their wrappings. They are very soft on one side with mesh on the other and they tie up the arm. Very comfortable, but she may hate them because she will not be able to use her hand(s) for mobility. If she uses only one hand to undo the wrapping, you would only need one glove. Secondly, you might try a tray table on her wheelchair. Usually, those can be taken off pretty easily, but they might be a deterrent. Third, you might have her hold a ball, or a doll or some pretend knitting, to keep her hands occupied. The Alzheimer association has a kind of book made out of various kinds of cloth to feel. That keeps some residents busy. Fourth, they can put her at a table with her back to a wall, and other residents on either side. Hate to do that, but it would only be temporary until the wounds heal. If you do this, be sure she gets range of motion every day so she will still have the use of the rest of her muscles after her wound is healed. She does seem a little agitated, but that could be just that she likes to be busy. Try a pile of socks to pair up. The best would be as much company as possible to engage her.

orangeblossom Jul 2013
Intersting comments from Jolly & Kathln. Mom has been on an anti-depressant for years as an adjunct to counteract her pain meds. At one point I think they changed it or added an anti-anxiety med. She has been known to give the nurses and aides a hard time (very independent-minded), but they have never told me she has been physically aggressive. And she does have a tendency to pack books in and on top of her tiny bureau - I'm always weeding them out. I am going to review her meds with the doctor again this week. Thank you.

kthln3 Jul 2013
jollyfest, very good advice there. Dad, 93, has dementia w/all the stuff that goes with it and a low dose of Zoloft has actually worked wonders with him. Everyone is different. Klonopin, which I have taken for anxiety issues, can help enormously too. It's good to see others realizing that we caregivers aren't out there to "drug up to stupefy" our elderly loved ones; we seek medication because often--not always--medication can be a blessing to the person who takes it, as it ends their suffering. Thank you for writing this!

jollyfeet Jul 2013
Sounds like my 9`1 year old mother, but she doesn't have a wound. Antidepressants don't usually do much for a person with dementia. We, at the suggestion of her Hospice nurse, started her on Klonopin for her "impulsiveness." Once she got on the right dose, she stopped hitting staff members (which was our big thing) and packs up less things in her room. You might ask about that.

orangeblossom Jul 2013
Ronald, I like your suggestion about the I-pod, but I doubt Mom would be able to retain the instructions on how to operate it. Too bad - I would fill it with music from the 30' & 40's, which I know she loves. I'm just grateful that she has good care at the NH, and that she is still with us!

orangeblossom Jul 2013
Ferris, thank you so much for your advice. I don't get the impression from Mom or the nurses that she is at the end stage. She is alert and active (hardly ever in her room), and social, but with the short term memory is doing herself more harm than good when it comes to the wound issue. I look at her in disbelief sometimes, because despite all her medical issues, it seems like she is far from dying. I am concerned that this wound is not healing, and I'm about to request a care-plan meeting so I can address several issues with the staff. I also need to find out from Medicare if I can take her out of the NH for a private 2nd opinion that it is covered (I'm pretty sure it would be) - she has Medicaid, Medicare and a secondary Medigap plan.

Lizann, thank you for your comments also. I believe the meds are all OK, and I doublecheck fairly often to make sure they have not altered her pain meds as they work like a charm (I think she has an iron constitution, but in reality she has built up a ton of resistance over the years - without them she would be in agony, so it's a trade off for the cumulative effects they have had on her brain). I have to call and find out if the PT people have authorized attaching the leg supports on her wheel chair - gotta keep after them. This NH is very 'anti-restraint' and it would have to be a situation like Ferris mentioned. Fortunately she does not complain of pain in her legs - probably due to her regular pain meds. Thank you for your prayers.

Crispy, fabulous suggestion about the equine leg wraps - never heard of them - will check them out on the internet and bring this to the attention of NH. Maybe I can get the wound specialist to order them so they will be covered by Medicaid. You are right - they are too busy to monitor Mom's 'picking' and she usually goes off to her room and removes the bandages while they are not looking. It is true her veins are shot too - due to 'venous insufficiency', so swelling is going to be an ongoing problem, especially with Mom's non-compliant behavior which of course she is totally clueless about. Thanks for your creative suggestion.

ronaldwgumbs Jul 2013
If my mom were alive today and in a nursing home with Alzheimer's, I would give her an I-Pod containing her favorite music. I'd also celebrate and cherish her life more.

anonymous176456 Jul 2013
Just thinking out loud here and this may sound strange. If you have an equine store nearby you might want to try an equine leg wrap. Sounds funny I know, but it's made by 3m and is very sticky and strong. Would have to be removed with scissors when dressing needs to be changed. I have used it in the past to wrap my Mom's legs and it truly helps to keep swelling down but wrapped properly it will keep the dressing on. Why nursing facilities haven't caught onto this don't know.

We wrap horses legs all the time to reduce injury and swelling. Trust me, they don't try to do anything to keep the bandages on or to keep their legs up.

Mom's veins are shot in her legs. Swelling is a continual problem and at some point it the body just fails to be able to keep up.

Lizann Jul 2013
I can hear the frustration in your post. I would have a doctor review her medications to make sure they are correct for her. I agree with the sedatives not being helpful. I also found antibiotics tend to confuse the elderly at times but given the infections you may need to continue them until these wounds heal. Perhaps the doctor can think of some ways to make her more comfortable and therefore willing to elevate her legs.

The practice of nursing homes to sit the elderly in chairs in front of the nurses' desk for hours on time, isn't comfortable for the elderly. It isn't a replacement for good elder care which needs to be one to one. However, it is the rule rather than the exception. If you mother is expected to spend hours sitting in a day space to make it easy to monitor her, she will likely remain restless.

Adding restraints may solve the one problem but often the elderly get very angry and upset which may not be exactly what you need either. While she may not be able to communicate it, having two swollen legs has to be uncomfortable/painful.
I will pray that the legs begin to heal. Don't worry about what your mother says, she is doing the best she can--God bless her and you.

ferris1 Jul 2013
As a nurse I can tell you her hands can be restrained to her wheelchair when staff cannot observe her. She cannot be watched every second because staff has other patients. Because she is in jeopardy of getting gangrene and having the leg amputated is about the only reason legally one could be restrained. (If they are a danger to themselves or others clause). So, do not fret about her telling untruths because she really doesn't know what the truth is, and the main issue is getting the wound to heal. Due to her continuing, progressive end stage, all one can do is try your best. I know you want to solve this problem, and I commend you for writing, however, know this is a terminal condition and no matter what is tried, she still will die. I will keep you and your family in my prayers.

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