How to advocate for a loved one's needs in a positive way?

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I am the primary caregiver for my 85 year old mom who has dementia. We are working to transition her into a nursing home full time. My bro had a meeting with the director yesterday regarding some other issues and he said the director suggested that we as a family are too high maintenance. I wasn't there for the conversation so I can't say what is perception, exaggerated, truth, etc. But it got me to thinking that I could be perceived as "high maintenance." I am used to making medical decisions for my mom as well as decisions regarding her care. I am not sure if I'm having trouble letting go of that control. I truly do feel I am trying to choose my battles but I wonder if I'm not objective about this. I ask for things in a nice way and no one ever suggests by tone of voice, facial expression, etc. that I'm a pain. If I see my mom getting confused in a way that she's been confused before when she's had a UTI I ask the doc if we can check her for it. When mom is constipated I ask doc if she can have something for it. If a piece of clothing has gone missing I see if we can locate it (usually a laundry mixup). I know people don't want others telling them how to do their job, but I also don't want to feel like I can't ever advocate for my mom, since she really can't advocate for herself. Any advice about how to build a positive relationship w/o giving up my mom's rights is appreciated.

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Captain I like that they paid attention so fast to Edna :) - but isn't that exactly the point? Attitude is everything. Their attitude (God bless them) is, we can get a quiet life by changing this small thing and making Edna happier. Whereas, horrifyingly, the attitude of too many others is, we can get a quiet life by discouraging people from being 'high maintenance.' They're like the tigers who say no one minds being eaten. Well! - does anyone ever complain?
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Hello Rosie1
Mom's doctor said she will write a prescription for her when she moves to a facility. In the meantime I make up the pill box and she takes it with her morning meds.
I too, would like to thank everyone so much for their help and experience, I received such great support and new insight in this journey. I am grateful to say, we are having a happy outcome, at least at this time, where at one point I truly wanted to run as fast as I could to anywhere but where I and my mother we were!
One of the cures for me was to get more help and find a piece of me once again and take the time to exercise! So important, it is my time!
Oneheart!
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Rosie, I want to tell you how much I liked the way you presented your question. You are not asking if you should advocate. You are not asking how to put the nursing home staff in their place. You are asking how to do what you know needs to done in a positive and effective way. That attitude will get you through the learning curve well.

A few lessons I've learned:

1) Pick your battles. Not every little imperfection needs our intervention.
2) Things take time in a facility. When hospice was involved things happened much more promptly, because they have a huge red-tape cutter. But generally it takes a while for changes to be put into action and for all staff to get on board. Patience, remember, is a virtue.
3) Giving praise is a virtue, too. Give credit where it is due. When aides come in to use a Stand Assist Lift with Mom and she fusses, I tell her, "I know this is aggravating, Mom, but these young ladies went to classes to learn how to use this machine and they are good at it. They'll be very careful not to hurt you."
4) There tends to be high turnover in the staff, and even if the staff is fairly constant there are shift changes and section reassignments, etc. Introduce yourself to staff not familiar to you. And I remind even familiar ones who I am, since three of my sisters also visit a lot and it isn't fair to expect the staff to keep us all straight without a few hints.

I'm confident you'll be a good and respected advocate for your loved one. You have the right attitude!
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Thank you ALL SO much! I am so grateful for this forum and the time you spend to educate others. I am learning how much I have to learn, and hope I can give back in the way you all do once I become more experienced at this! I do have two questions to follow up. To oneheart, did you have to get the doc at NH to approve the D-Manoose and do they give it to her or because its a supplement is it something you as caregiver give? To pamstegman, this may sound like a silly question, but I never thought about stepping out when the CNAs are in. Is it just to give them space to do their job? This comment may make me seem clueless (and maybe I am) but I just never really thought about it.
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i eat the food with a straight face , pam , but h*ll to the NO am i going to tell the cook it was good . respecting that they are professionals and staying out of their way i agree with tho .
i asked head nurse ( yes the one with the dirty knees ) yesterday if maybe edna couldnt be accomodated with a small pee leakage pad instead of a bulky adult diaper . i told nurse it was humiliating to edna and just asked her to think about my suggestion . edna tells me all of her most personal concerns so im sure ill find out if any changes are made . honestly , i saw no sign of the bulky diaper while visiting today but with edna its kinda like out of sight out of mind . she aint going to mention it if its been resolved . i think staff welcomes input if its phrased gently and in theirs and the patients interests . a content patient is definately in their best interest imo ..
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I never go to the Director, they are too far removed from hands on care. I do meet often with the head nurse, after office visits or return from hospital. I make sure to thank him for everything they do for her. He has all our cell phone numbers. If I stay for a meal, I thank the server and compliment the cook. I tell the recreation lady how much mom enjoys the trips and she shows me mom's participation sheet. If an aide comes in, I offer to step out.
Little things like that add up and build trust. It also makes it clear you care.
Find little positives and notice them. It's a lost art.
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i like eyerish's reply . my aunt has been in NH for about 6 weeks . im not poa but i am the family member that has the time to really listen to edna . i make it a point to be respectful of staff and any input they get from me is intended to work in parallel with them . they are a quite acclaimed phys rehab facility in indiana despite being an old building and unimpressive to look at . i concern myself with ednas comfort and the last info i recieved from them yesterday was they are trying to get edna a lower wheelchair so she can motivate with her feet , then they plan to resume lower body rehabilitation . the couple of hours i spend with edna each day , usually outside , are hours they can put her rummaging , wandering , troublemaking little a** out of their minds and get back to their other patients or smoke a fattie in the metal shed out back or whatever . im glad ive not questioned them much , they seem to really know their business and me questioning them would only make me look stupid . they operate by medical , state and federal guidelines , theyre not making it up as they go . their freakin jail food blows but they feed me for free if im there at mealtime so i pretend to like it . you can advocate without being an overreactive jerk is what im sayin ..
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Advocacy is an important part of your responsibilities as a caregiver. It’s a matter of striking the proper balance. I have had experience as a caregiver advocate, and I write about the topic in my book, “What to Do about Mama?”
When my mother-in-law was in a nursing home for rehabilitation after a pelvic fracture, she would press her call button when she had to use the bathroom. (She had not yet been cleared to go to the bathroom alone.) She would then wait and wait and wait, until she could wait no longer. She would then have to have a bowel movement in her diaper.
I spoke to the social worker about the issue and was told that my mother-in-law was so “quiet.” My point exactly. When a “quiet” person rings the bell because she has to go—you can count on the fact that she has to go. Why should a mentally competent and continent woman have to suffer the degradation of soiling themselves? I was told she would be put on a 15-minute watch, but I replied that was hardly necessary. She just needed to be helped in a timely fashion when she pressed her call button to go to the bathroom (something she did not do often).
The need to be an advocate is not necessarily a criticism of the facility where parent is placed. It’s just that it is easy for something to slip by or for mistakes to be made, and caregivers must be on guard to prevent problems, misunderstandings, and omissions. To be an effective advocate, you need to educate yourself about different aspects of caregiving, health, care plans, and medication.
One helpful means to accomplish this is to develop a personal profile to be posted in your loved one’s room that provides information about his or her personality, preferences, and interests (and it’s a nice touch to include a picture). This gives staff more understanding of their charge as an individual and provides topics for conversation. Personal Profiles personalize the individual to staff and are also great conversation starters.

When placing your loved one in any type of living facility, get to know the staff and establish a positive relationship with them. No matter how good the facility is, there will be situations that require your advocacy. The better the relationship you have established, the better the cooperation you will (hopefully) find.

As one of the caregiver’s stated in my book: “I found that my primary role, once my father was admitted to the nursing home, was to model the behavior my mother and I expected of the staff when we were not there. By that I mean how we spoke with him, how we honored his requests and anticipated his needs, how we treated him with a great measure of kindness and love, respect and dignity. It didn’t take the staff long (all three shifts) to grow to love him and treat him as well as we did every time we were there. It also helped that we recognized the hard work the nursing staff did every minute of their shifts by taking over for them with my father or by bringing them little treats from time to time. Always, every night before we left, we thanked them for their care of him.”

Barbara M., author
What to Do about Mama?
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Someone has to be an advocate for your mom! So if you are high maintenance so be it, you are trying to care of her the best you can. Gosh, we are not given a handbook for this journey, we have to learn and make it up as we go.
On another note regarding the UTI's, I have discovered a supplement that has really helped my 90 year old mother with these infections. It is called D-Manoose... it works! We had her take 2 a day while on anti-biotics, dropped down to 1 a day and has not had one for 6 months, they were chronic before.

*Don't worry about what others are thinking, you can waste a lot of energy on that one!...it seems your intention is in the right place, so, no worries....
Julia
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Everyone has said it all but I will add that when you percieve a posible problem such as the UTI ask for their advice. "Mom acted this way before what do you think could be causing it?", that way they can take the credit for noticing strange or unusual behaviour and then they suggest the urine be tested. that gets you a free pass to out of the "fussy interfering relative" chair and earns them "Brownie" points.
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