Communication between caregiver and client family members. Any advice?

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My 97 year old client's family members live out of state. While I try to keep good communication with them concerning her needs and current behavior issues as well as medical needs, it’s becoming quite difficult. My client actually needs 24 hour supervision but the family is resistant on providing that.


We are all in agreement that her last days should not be spent in a nursing care facility. However the family is unwilling to provide me with authorization to take care of all of her needs the way she needs. Example: The responsibility of her care is divided amongs a few of her children. One of them pays me to take care of them. One of them authorizes medical as needed. One of them pays all of her bills. And then she is responsible for paying Dr visit co pays, grocery expenses, day trips etc.


The problem is her cognitive function is limited. She has dementia and is sometimes very uncooperative. An example of that would be a simple grocery trip. I will take her to the store for staple grocery items such as milk, bread, toilet paper. Once at the store she will refuse to buy anything other than ice cream, cookies, milk, and cereal. Never proteins, never soap, never anything healthy. Mind you my client is not on a fixed income in fact she is more financially blessed than most people I know. However she chooses to exist on PB& J sandwiches, ice cream and cookies and dress as though she sleeps under a bridge.


The problem with these things is it appears as if I’m not properly caring for her because her family lives out of state. My concern is and has been that the credit card her family provides her with to pay for her own needs is actually more freedom than she should mentally have. It gives her the option out of seeing a doctor when she needs one, buying healthy food rather than junk, and is even unfair to me after I have driven her to the store (many times without being reimbursed for gas) only for her to decide she doesn’t need anything that badly.


The last point I would like to bring up is the fact that she doesn’t have someone with her 24/7. She lives alone and while she is able to walk on her own, she sleeps with supplemental oxygen yet consistently refuses to keep it on. She paces around the house from 3:30 am to 7:00 when I arrive. But has on rare occasions decided to take a stroll around the neighborhood. The questions I am asking myself at this point is how fair am I being to myself for worrying about her well being and trying to help her achieve the best quality of life she can have while her family appears to be perfectly happy not knowing there are problems with this system we have in place. I apologize in advance for the rant I’m just looking for a resolution that doesn’t involve her being placed in a NH.

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In my humble opinion, you need to tell all those family members who are involved in her care what you’ve told us. Sit down and write the same letter to each of them. Send it registered mail. State facts and not opinions. “Today, Alice had a piece of cake, a glass of soda and a bag of chips for breakfast. She refused to eat the eggs I prepared for her.” Or, “Today, Alice and I went to the grocery store. I had picked out milk, bread, some fresh fruit and vegetables for her, but Alice became uncooperative in the store and refused to let me buy these items for her. I told her we could buy the ice cream she wanted OR the cookies but she refused.” Or, “Alice was uncooperative today when we were getting her dressed. She refused to wear clean clothes and insisted on wearing some old clothes from the hamper.” Then say, “I am writing this letter today to inform you of these occurrences and to ask for your guidance. Perhaps you, as her children, can offer me some suggestions on what you feel would be the best way for me to care for Alice.” At least that would open up communication channels for you all. I know food was a real sticking point with my mom, too. I’d tell her if she ate her supper, I’d stop and get her a cheeseburger for lunch. It usually worked.

Keep us updated on how it works out. We all know how frustrating this can be. Oh, and also, with gas prices sky high, keep a mileage record of when your travels involve “Alice”and send your expense receipts to them. 
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Reply to Ahmijoy
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It's heartwarming seeing helpers that genuinely care for their clients' wellbeing as you do. I have the same experience with the carers that help my mom, and they do have very similar concerns as you do, except I'm close, and I can stir the boat in the right direction.

You need an authority figure that can make an intervention for you with her family, such as her doctor or a trusted family friend who can directly speak with the family.

I would simply make this person read what you just wrote here, you don't need many other words, you've said it all, and ask him or her to talk to her family.

You are right, on all fronts.
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Reply to Arwen31
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Valenciasmom, as a professional you have to report the safeguarding issue. Do it formally, in writing, copied to all involved family members first off. Specifically it's the wandering risk: state exactly what has happened, with dates and times; state what you believe the risks to be (getting lost, injury, road traffic accident, exposure); and state what solution you recommend (needs assessment with a view to ensuring full-time monitoring, e.g.).

If you don't get any kind of satisfactory response, you'll have to up the ante. I assume you're working independently? - so you don't have a line manager or agency to refer this up to? In that case, you will need to tell the family that either they address the safeguarding issue by [give them a deadline] or you will be mandated to report your concerns to APS. Don't be censorious or critical about it, these are matters of plain fact and you should treat them as such. Your client is an elder at risk. The risks are being ignored. You don't have a choice. But let's not cross bridges we haven't come to - aim for a positive response from them.

Keep detailed notes of journeys undertaken for your client's benefit, recording mileage, location and date, and bill it at the going rate of $x per mile. You should be reimbursed for out-of-pocket expenses like this without argument.

Then there is the question of how much decision-making authority should be given to you in a way that overrides your client's autonomy - her choices when it comes to diet, attendance at appointments, personal grooming. Again, I think you should be looking for a formal needs assessment here for both back up and future care planning. You're the professional, I'm sure you don't need me to tell you that there's a balance to be struck between your standards and the client's willingness (or otherwise!) to let you implement them. I can imagine you cringe when other people see your client looking like a shopping bag lady and she cheerfully tells the doctor about her "balanced" diet - two sandwiches, one in each hand?; but speaking for myself I'm more impressed by caregivers who advocate for their client than by any number of freshly laundered blouses.

I think you are doing the most tremendous job, and I am really happy to think that this lady is being so well supported in her main wish to stay at her home. The way to move forward, though, is to remind everyone that over time your client's needs have increased and inevitably will continue to, and if she is to remain in her home then there has to be proper attention to how this is going to be addressed. You're aiming for a sense of urgency about it, rather than drama or threats. And this above all: you are RIGHT.

It makes life complicated that they've divvied up the decision-making in the way they have; but on the plus side this gives you an excellent reason for putting everything in writing - it's so you can be sure that everyone shares in exactly the same conversation by getting copied in.
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Reply to Countrymouse
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It is heartwarming but must be aggravating when family doesn't listen to a trained, experienced caregiver. Its time to tell the family she needs to be evaluated. This woman should not be alone. I hate when people say "We just want to keep Mom in her home". At the expense of her being hurt.
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Reply to JoAnn29
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Thankyou for your post, your mother would be far better off in a caring 24/7 environment. I just found a good place for my mother, she was falling, has onset dementia and was begging me to let her live alone. I found her on the floor two weeks ago. I don't know how long she was down. I still feel bad that I cannot provide her care, but she gets better care where she is then I could provide.
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Reply to QUITbeatingyou
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Is the family aware of the wander management issues? I think these would probably be at the top of the priority list. There could be accusations if she's wandering around at night, especially if the family isn't on board with a higher level of care but will look to you to be responsible.

Worrying about her is a very positive reflection on your part, but there's always the possibility that these family members "aren't on the same page" and will expect you to do the coordination, w/o authorizing you to create the proper mechanisms.
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Reply to GardenArtist
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I agree with everyone -- just be honest and open with the family members. What may seem to you as a crazy way to manage mom's affairs, may to them be a system that they believe to be working out just fine. Unless you thoughtfully alert them of the need for 24/7, how would they ever know? Unless you tell them about the day-to-day situation, how would they know? Regarding food, I think if you cooked something for her she would likely eat it...she's likely forgotten what it's like to eat a hot meal. She is obviously frightened/paranoid in the early morning hours, awaiting your arrival. I think the family is trusting you to provide the information they need to make decisions. But, be aware that with new information, they may decide it's time for mom to go to a care facility. When they say they want to "keep mom at home," that may be contingent on everything staying the way it is. Good luck.
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Reply to ArtMom58
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Never feel guilty about venting. You ARE being unfair to yourself and the family IS being unfair to you. Two things you mention are that she has dementia and is home alone at night. This is an accident waiting to happen. I KNOW you care deeply for this person, but I also can tell you are extremely frustrated, worried and going CRAZY with the position you have been placed in. For her safety and your own mental well-being I would contact the Office of the Aging in your area. They will provide you with advice and contact the family as needed. I wish you the best of luck!
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Reply to Piggie
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You sound like an amazing caregiver. I have been managing a staff of 7 caregivers for my parents. I have 4 siblings who like to be kept in the loop on what is going on with mom and dad. I am paid by my parents to manage their affairs and I do everything. What I find very useful is I use an app called slack for communication between caregivers, myself and my siblings. I require all caregivers to post information at the end of their shift about what went on that day. This is a great way to keep track of things as you can go back and look things up that were talked about in slack. This was a saving grace for me so we did not have to have emails or text messages going back and forth all the time. I would recommend using a spreadsheet to track mileage and include purpose of trip and then submit like an invoice when you submit your hours to be paid for. Have you considered getting food deliveries to the house? This would take away the need for the aggravation at the store deciding what to buy. I tell my caregivers when they are hired that my parents are like toddlers and you are the boss and you set the rules not them. I moved my parents into a memory care facility recently and it has been such a good decision. My mom had always said she never wanted to move out from her house, but the family needed to make this decision for my parents to keep them safe. My parents like where they are at. Good luck.
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Reply to Marysd
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Pick your battles - so drop all food issues - this is a 97 year old woman who finds j & pb sandwiches comforting, as is the ice cream etc - these may have been treats when she was growing up - at her age let her eat what she will actually consume & get her a multi vitamin that looks like a gummy bear - long term nutrition is not going to be a factor so don't worry about her diet giving her rickets in 5 years

Her clothes should be weaned out of all 'ratty' items & placed in another area that she won't find them but don't throw anything away because you really don't have any permission to do so but they can be 'misplaced' - when you hang up her laundry put slax on same hanger as the shirt that goes with it - empty the hamper daily so she can't find too much in there and/or place clean ones there for her to 'find'

So now about the time you are not there - this is the primary thing you should tell her family about & check with local agencies about what if any responsibility you have when you leave at night - maybe getting someone to night-sit her would work - it sounds like the family have put most of the burden on you - do you work 7 days a week? if not then who helps on you days off? - they sound penny pinching to line their pockets ... or am I misreading this

This woman is lucky that you care for her so much - ask the family to get a credit card in your name with a small maximum so that you can buy healthier foods she is refusing to pay for & keep all receipts for them but her care when you are not there is the most important item to bring up
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Reply to moecam
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