Any tips on making a care plan with someone who doesn't think they need one?

I'm confused when you say your loved one suffers from 'perhaps mild dementia' and cannot use the vacuum due to balance issues, and cannot remember how to use the stove, and eats foods she forgets about in the fridge. A person like this should really not be living alone, in my opinion, b/c dementia tends to worsen at a moment's notice. Not to mention she's displaying worrisome behaviors already that signal her inability to function alone. Just b/c she may not believe she needs help or suffers from cognitive impairment does not mean it isn't real. She doesn't drive, cannot do her own housekeeping or cooking, yet lives alone. What if she were to fall from the balance issue you mention? Does she have a Life Alert button to wear at least?

If she wants to 'stay in her condo until the end', then she has certain compromises she must make. One being she accepts help in the condo on a regular basis. Ie: Someone comes in daily to help her shower, clean, cook, shop for groceries, take her to appointments, etc. In other words, she hires someone for a minimum of 4 hours a day thru Care.com or an agency, etc. You calling her daily and visiting 3x a year is not nearly enough. She needs someone with eyes on her daily to see if/when she's declining, what's happening, what needs are cropping up that require attention, if her cognitive decline is worsening, etc. Someone who can keep a log of all this, too, to bring up at her doctor's appointments. Otherwise she can go into managed care like Assisted Living where the help is on site FOR her 24/7 which is ideal, really.

I give you this advice after caring for both of my parents for 10+ years and witnessing their needs and their decline over that period of time. There was A TON of work involved in their care, and they lived in Independent Living, then Assisted Living, then mom moved into Memory Care AL the last 3 years of her life. The 'fantasy' is the elder lives alone until death, while the reality is normally something entirely different. Since your loved one has already been through cancer treatments, there will be ongoing doctor visits and follow up care now for life, I would think. All of that has to be taken into consideration when a care plan is thought about. In a perfect world, she'd be part of the decision making all along; in reality, with cognitive impairment present, and probably denial as well, she cannot be a part of the decision making process; someone else has to have POA intact to do it FOR her.

Good luck.

With most sincere respect for you both, the time will come, whether sooner or later, when she will no longer be able “to participate in all decisions about her own life”, and if she is physically healthy, “She wants to stay in her condo until the end” is probably not likely either.

When my LO entered a very welcoming and pleasant Assisted Living, leaving behind the home where she’d been born, we who loved her knew she’d been confused, but were surprised to learn soon after she’d moved in that part of her emotional “stress” was that she’d been attempting to conceal her confusion from us, apparently for quite a long time.

There was NO QUESTION that she would have preferred to have stayed home, but physical safety for her, as a fall risk in a house with a complicated floor plan and stairs was impossible there.

You are a good person, doing what good people do. It might be very helpful for both of you to have an assessment done of her condo under the guise of adding any necessary features that can increase her safe usage of her surroundings. Many agencies provide this kind of assessment for people of her age.

It will be helpful for you both to establish this kind of baseline as her needs begin to change.

Good luck to you both.

I'm sure you have read from others that "She wants to stay in her condo until the end" is quite common.  

I've also been told this..
"I want to stay here as long as possible". But just what does *as long as possible* actually look like? I think I even asked that question, many moons ago..

It is however a wish, based on feelings.

Is is not a thought out practical plan - with solutions for current & new health, mental & social needs.

This is where you come in. To help make the plan.
To listen (to her wishes & values that underpin them) to find out & discuss what really matters. Is looking at the same condo walls & keepsakes really important or is taking your keepsakes to a new place acceptable. Leaving old friends & familiarity is hard - accepting a drop-down in independence is hard also. But there are new friends to make & relief to have more support to gain.

I have also been following the newsletters from a graduated care condo that I found through extensive research 2 years ago. This organization has several condos in the region with residents that range from fully independent to memory care. They offer a'la carte services and packages as people require. The have a fancy restaurant and coffee shop as well as individual dietary menus. They treat staff well in order to keep them exclusively for their residence. They have a daily social activity plan ranging from community events, grocery shops, to Sunday drives, as well as in house clubs and events. I feel faith in this place as it has residents who are completely independent that have bought in so they can age in place. They are like quality control people. I told my mom about it in 2020 and we looked at the outside of one of them. So, I've been watering this seed for two years.

After we talk to someone from home care and have them assess her needs then we can compare it with this. It helps her make a more concretely informed decision.

Thanks for having this forum to share in.

Ann, thank you for your empathetic and gentle answer.

Yes I imagine concealing issues is extremely stressful and I bet my mom would feel relief as yours did. I did find a beautiful one and I know she would like it a lot - it's like an all inclusive resort with care supports. I'll live in a place like that one day too. It's hard to hold dignity for someone and to bring in changes against their will, even knowing it's for the best. This is all new to me.

The idea of having the condo assessed by a home care agency is the perfect next step. I will definitely look into this. It brings another pov and is in line with her plan of aging in place.

Thanks for sharing with me:)

I wish you luck with your ongoing plans. Your LO is truly lucky to have you.

Alas, I tried for years for a longer term 'plan'. Granted, there have been changes, OT brough in, PT ongoing, many home services really. But no plan after *as long as possible*. That is a blank page still..

I HAD stress about this. Now I float along with more acceptance : what will be will be... If/when a crises of some sort happens, I will gather professional help & plans will be made.

What is she refusing is 'paid' help. She has a fellow who helps with the housekeeping on your list - he's free. Evidently you make enough frozen meals to last 4 months at a time - is that correct?? That would be a lot of meals, so I'm thinking you don't prep that many and she is getting meals somewhere else.

That brings me to the next issue: With no family to see the day-to-day, it's very possible she is calling on neighbors much, much more than you think to do things for her. If she doesn't drive, how does she get groceries or run errands? Probably asking others for rides or help. When others are asked to do more and more, that's usually when adult protective gets involved. Neighbors rightly assume and witness and elderly person living alone, few visits from family, and declining abilities. Talking on the phone will not bring issues to the surface with her because, in her reality, she has no issues. She has her needs met via the goodness of neighbors. Also, when you visit, she probably wouldn't be making calls to ask others for help because you'll handle things. You really can't get a clear picture. You might want to go see her and get out to meet all these good friends and neighbors she has to ask them how she manages or what she needs help with. (Something already triggered you that she needs help with housekeeping, groceries, food prep - either observation or info from neighbors)

Getting out of the house for trips: the condo community may have a calendar of events for people who can make it to the bus. Ask about that and help her get signed up for a trip per month. However if she needs a walker or assistance - then a person needs to be paid to travel with her. And add that sort of paid help to the other tasks she needs help with.

I would suggest another visit and spend a month if possible. A doctor visit where some physical or occupational therapy could be added to help her with balance and mobility. When home health calls to set it up, ask them to do first round of one of the therapies, like PT, for Medicare approved time limit, and then add the other one, OT. That way you keep an exercise thing going on for several months. Usually a couple times a week. Very beneficial.

Twice a month to clean, shop and food prep needs to be set up. Just tell her if she really wants to stay home as long as possible, these things will help her achieve her goal. You aren't there enough to do it, so you have to hire someone. Before you have the conversation, ask some neighbors about hired help they are aware of in the condo community. You might be able to hire someone already working around there and could work out being added to the schedule. Instead of 2 eight hour days, maybe get 4 hrs a week. Clean one week, food prep and shop the next.

I would also suggest an alert button she could wear around her neck (ck out the Lively alert - can order online and I think you can still get it at Walmart). If she fell, one push of the button gets her help. The one I mentioned has gps, so if she doesn't answer the phone you can see where she is. Wear it all day and put on charger when she goes to bed. Quite easy, but most people do have to be reminded to put it on at first - have to create the habit!

I would keep up the daily phone calls. It's a few minutes a day to keep her connected to someone she needs to be connected to. As well, keep up the financials.

Hummingbird9: My own late mother wanted everything to remain status quo, living alone. You are wise to think ahead in regard to your mother's situation.

One idea that might work is to tell her that your wonderful AL has advertised cheap meals as a draw card to get people in. You both of course wouldn’t fall for that, but you are curious to have a look at it anyway. You hear mixed reports from friends etc etc. You heard about this one a while ago and you are very suspicious. You need to go with an elder to get the deal. Will she go with you next time you visit?

Visiting Angels or a group of that sort to assist. Sounds like she is social on her own but just physical chores assistance. Also, personal experience, the Angel can keep you up to date with what is happening if more or less assistance is needed.