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

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?

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!

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!

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.

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 ..

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.

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 ..

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?

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

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.

You are not high maintenance. You are being an advocate for your loved one. I bet if any of the workers in the NH were in your shoes, they would act the same way. Your loved one can't speak up for themselves, you must. I would seriously reconsider your choice of NH.

like you im waiting for my mum to go into a nursing home, she is being transferred from 1 hospital to what they call a boarding room in an other hospital until a placement can be found. my mum suffers rom regular UTI s & also has a problem with her bowels, if I feel she is more confused than ever I don't hesitate asking for a sample to be taken. if she has pains in her tummy I ask if she has moved her bowels? I put a note on the wardrobe in hospital saying home wash only. when my mum goes into care I will carry on doing this. my sister will do the same, this so called director is in the wrong profession. an ignorant man. don't let this obnoxious sod get you down, this woman is youre mother, just because she is going into a nursing home, it is you as her daughter would see the change in her behaviour before staff do. my sister and myself still have this meeting to attend once my mum has been moved, I don't care about a director, or the prime minister for that matter, I will be asking questions all the same, you only have 1 mum, keep an eye on her and voice any concerns you have, if you don't then they wont be fixed. good luck.

Rosie1, it sounds like you are a wonderful advocate for your mother. If the nursing facility director said your family is "high maintenance" then you need to find a better nursing home. When the administration and staff of a facility are not doing their jobs, and know it, they prefer no interference from the families. Find a facility that will consider your mother's needs by consulting her (if possible) and the family.
Your mother's care and comfort should always be their main concern. Please, keep doing what you're doing. You are in the right.

my father has recently been placed in nursing facility after falling 2 times within 24 hrs, no broken bone/fractures thank God. but he has been diagnosed with moderate to severe dementia/Alzheimers and I knew my mother, 87, could no longer handle him. Lets' face it, there are NO nursing facilites that will operate like we do in our own homes, they are not the Paris Hilton Hotel either and we all make mistakes...........BUT......we do have to protect our loved ones and IF you as the family member or whomever that has poa, or whatever you want to call it.....has to STAND up for your parent/spouse/whomever. If the nursing facility is offended because someone decided to speak up instead of "letting things slide", then that is their problem not yours. I already have caught the one head lady lie to my face in saying that my mother said "that my dad would be coming home"......uh.my mother said 4 months ago she could no longer handle things....then I am told that my dad would get therapy 3 times a week for 1 hour.......wrong......he gets it every day for 1 1/2 hours......so guess who I already complained to. not that I don't want him to get therapy. but I was never given a paper on it, let alone a paper indicating the prices.......so I am talking to billing today cause one day he was so tired that he couldn't even do 20 minutes of therapy. guess who is NOT going to pay for 1 full hour............not us. So never feel bad or so called high maintenace for standing up for what is right and what should be done. God bless those that do try to help and shame on those who try to make the previous caregiver/family member feel guilty for speaking up.

If not you then who will advocate for mom! All of the above answers are correct in my opinion however if you can afford it hire a Geriatric Care Manager. They are healthcare professionals who are nationally certified in coordinating care and patient advocacy. To find 1 in your area look under the National Association of Professional Geriatric Care Managers. I believe the website is wee.caremanager.org

Hi - you are awesome, if that's high maintenance then rock on! I like ferris's take, and I'd go to the director soon over some light question and speak with him. Get his outlook, straight from him... Men (bro) sometimes are sensitive to being 'a pain' when women are not, do you think? You'll know what to do after you meet with him. You're interviewing him as well as the other way around. You just need them to be on your team, and you can come to trust them as you see things are okay, there's nothing high maintenance about that. Good luck with this transition for all of you.

This director should be reported for his/her unprofessional behavior. Make sure this nursing home is the place you want to put your mother. There should be no discussion of how the family deals with this situation, only that they treat staff in a respectful manner, but that doesn't mean you cannot advocate for changes when you feel your mother has problems. If you are not familiar with medical protocol in nursing homes, do your homework and ask what the parameters are and what to expect. Staff should explain what is being done, and not take offense when you ask. If they do, find another place for mom.

Rosie, my rule of thumb is normally "a reasonable request, courteously phrased." In all dealings with people who are hands-on with my mother, I exchange courteously for 'charmingly' and lay on the praise with a trowel.

But reading your post, I think you probably already do that. And I have to say that phrase from the manager would leave me very stony-faced indeed.

Ok, I'll step back from my first reaction of wishing to take him or her warmly by the throat. Let's not overreact, eh. Let's assume s/he was making an aside during a jocular conversation with your brother. Oh my how they must have companionably rolled their eyes.

So. "Too high-maintenance" - for what? Too much for your mother to be admitted on a permanent basis? Too much for you to continue to be her primary Next of Kin? What exactly was that supposed to mean, what message were you supposed to take from it?


Goodness I feel cross on your behalf! Bollocks to them. Don't let this shake your confidence: continue to act as your mother's alert advocate, ensuring that you are courteous and considerate to staff at all times and that your expectations are reasonable.

There should be ONE family member advocating for mom, interacting with the nursing home, suggesting changes, asking for services. Any thoughts/complaints other family members have should be voiced through that one person.

That one person may have a solution that doesn't involve staff . . . they may decide not to fight that battle . . . they will have more of a tendency to look at the big picture and appreciate staff more. Maybe you have too many cooks spoiling the soup.

Mom was losing her clothes at the nursing home. What could I say to them? "Don't lose her clothes?" Should I go rummaging through their lost-and-found every week? I never said a word about it. On the dirty clothes hamper in her room, I put a sign that said, "FAMILY DOES LAUNDRY". Problem solved.

Family is not going to be able to change the big huge picture. Staff has routines and ways they do things. They may have 100 people there to take care of. They cannot POSSIBLY remember every person's idiosyncrasies and every family's preferences.

I posted a couple of signs over mom's bed - done on the computer. One of them was "Don't Believe a Word She Says" Smiley Face -- The other was "High Fall Risk". When they called me to tell me she'd fallen and cut herself (not seriously), I thanked them for calling and let it go. (She'd fallen at my house and broken her hip, for Heaven's sake; How could I be surprised?) On Nurse's Day I brought two two-pound boxes of Fannie Mae Candy ($22/pound). One for the nurse's station; one for the rehab department. I had a picture of mom as a young woman on her nightstand.

I praised staff to high heaven ALL THE TIME. "Angels Without Wings" I called them. They had a once-a-month meeting for family I always attended (alone, I'm an only). I used that time to tell staff what a good job I thought they were doing and how grateful I was for her fine care. Did I mention particular short-comings? Yes. But surrounded and cushioned well by praise. Was their care perfect? Not by a long shot. If I wanted perfect (and MY way), I'd have to take her home.

I wasn't concerned with whether or not she moved her bowels. That's their job. I never once asked a doctor to perform a test. I DID insist on talking to the doctor a few times. Mom has congestive heart failure. That requires balance of meds to salt. Sometimes I knew they had it wrong, and I would call that to their attention.

When I had minor criticisms (sooooo seldom), I did that out of earshot of others with the Managing Nurse.

I had one "run-in" with the Managing Nurse -- when I instructed them to hold her diuretics until they'd spoken with the doctor. She said they couldn't do that. Really? I said something like, "I'm telling you she doesn't get one more diuretic until you've talked with the doctor. And if he doesn't decrease her dosage, you will have him call me." He decreased her dosage AND he called me. (There was no doubt in my mind that she was severely dehydrated.) She was royally P.O.'d. So I did speak up as an advocate for mom; but only when it counted. For the most part, I let their system work as it was designed.

I visited mom every day around lunchtime. I helped other residents any chance I had. Staff actually insisted on feeding me. (God, I hated that. Ha!) And staff didn't miss that I saved them many trips for the cream they forgot to put on someone's tray, another glass of water or juice, helped them clear trays, whatever. In a small way, I was conspicuously helpful.

Leave the vinegar at home. Bring honey. ;)

My dad went into a nursing home after living with me for 5 years. I had it all under control, we had a routine and a schedule, and I could tell just from looking at him what he needed. Once he went into the nursing home I felt as if the staff was doing everything wrong. WE didn't do things this way, we did that THAT way. My dad didn't take meds in the afternoon, I gave them to him in the morning. I never would have lost 5 brand new shirts when I did his laundry like the NH did.

I felt like I was running in circles and I was. Eventually it dawned upon me (after yet another conversation with the NH) that institutional living isn't perfect. It's not tailor made for the individual. Should it be? Sure. But it's not. It's an assembly line and my dad wasn't #1 anymore. I had more of a problem with this than he did. I had to relinquish control over to someone else or I was going to drive myself and the staff nuts.

I learned to pick my battles. I didn't want the staff to inwardly groan and roll their eyes every time I walked in. I didn't want them to take out their frustrations on my dad by not giving him the best care they could. When our loved ones go into a NH the caregiving doesn't end, it just gets different.

I had to lower my expectations. I had to realize that my dad was not going to get the same kind of care in a NH that he got when he lived with me. It just wasn't possible. And it was too much stress for me to have meetings all the time over things I objected to or things I wanted to change about my dad's care. I expected him to be fed and hydrated, I expected him to sit up everyday, I expected that there be no abuse of any kind and I expected that he wouldn't get pressure ulcers. Those were my 4 biggies. Anything else I had to learn to work around.

If the NH used the words, "high maintenance" to your brother I would cross them off the list. They shouldn't speak to him or you that way. But it wouldn't hurt to go over your expectations and see if there are some you can let go of.

You're not wrong in wanting the best care possible for your mom, neither was I when my dad went into a NH. But I had to adjust my interpretation of the word, "best".

Too high maintenance? She doesn't know how to win friends and influence people. If your description is accurate, than no, you are not high maintenance. Mom can't express these for herself, so you must do it for her. The NH will just have to learn to live with it. High maintenance indeed!