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.
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.
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.
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.
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.
Their thinking is that we should enlist the help of the company that does great work helping those in need, but I somewhat" jokingly" say that the motto of that resource for them is: "Find a home for MOM, but as far away from us as possible!!"
I do believe that the discussion should insist where even a stretch, that we all should "Do unto others as we would we would want them to do unto us". I know that this is "absurd" in the minds of more recent generations but the Golden Rule is my freely chosen rule of life.
If you want to do a draft & post as a follow up on this site, folks will give you suggestions. I think doing a timeline on perhaps a week of care (with an outing or two) will be very insightful reading. I would start each day as to her appearance (clothing new & clean or days old, if she appeared to have showered) and what that days temperature and weather was like and then end each day with what meal was set out for her & clothing set out as well.
Take iPhone fotos of meals and clothing set out. I wouldn’t send these but you have then with time date for the day when mom denies you did things for her, cause it’s gonna get at that point & family will likely take mom’s word as accurate and not yours. It sounds like beyond denial by her family & in my experience that situation lends itself for family to want to find someone to blame...... and it will be you. Proactively do things - like take fotos - to protect yourself.
The wandering need to be mentioned as to how you became aware of it and perhaps too what the weather was those nights.
If family does nothing, what are you prepared to do?
You should be compensated for mileage, but whether it’s at the federal business rate or the lower medical rate will depend on how you are paid for careging.
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
I think id try to arrange a weekly group call or messenger chat. To up date them. I think id make sure that i had some way to buy her groceries and staples . Have them set up a grocery delivery maybe ( so you can just use an ap and order or something) Meijers and Whole Foods deliver. If not have them set you up with a bank card that they can put a monthy amount in for you to make purchases on her part. They can control what to put in it and you can always scan receipts in if necessary. Ask for evening help - companionship. They can do some house work and washing the few hours she does sleep.
As for the food, Chart that too . Try to change the jelly and peanut butter flavors. Maybe make the sandwich with French Toast . ( getting some protein in) . Try to get her to eat the same fruit as the flavor of the jelly . Put the peanut butter and jelly on pancakes or waffles .. Just to expand and slowly intro fruit and maybe an egg. Get permission from family to tell her if she gets sick from only eating what she eats .. she might end up in Hospital . Ask them her favorites, before this . ( which you probably did already) Maybe you can blend something healhty in the jam like spinach . I think you might have to get inventive
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