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She can also get things out of the cabinets and refrigerator but is used to me doing it or saying 'can I have _______.'


My home is small and this isn't a nursing home. She is able to come into the living room and take her meds and eat in the living room.


She seems to get worse when she is told to do small things herself.


By the way, she plans on this continuing when she moves back up to her house.


No in home care probably after this week except for someone coming in the give me respite.


Y'all know my story. She is impossible to talk to.


She keeps wanting me to look here at something my cat does or whatever, but when I ask her if she wants supper, she needs to know what we've got to eat.


When no one comes in will she just give up altogether?

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How did mom's doctor appointment go?
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JoAnn29 Feb 17, 2024
OP has not posted since this post. Looks like she is reading other ones though.
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Make sure you set boundaries. If Dr says she can return home, take her home right from the office. Tell her you will bring her stuff to her. Maybe grocery shop to put food into the house. Make sure she is all set up and then tell her she is on her own. If she can afford an aide, then she can hire one. Tell her you will not be at her beck and call.
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Rbuser1 Jan 22, 2024
I won't leave her there like that. I will work something out. Leaving her by herself for a few hours now and then is how it is for now. Making sure she eats, and stays warm. The rest can't be helped.
Every one stay safe and warm and thanks for the advice and listening 👂ear.
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Update: not a lot to update. Mom is doing pretty much nothing
No activities. Just watching TV or watching me.
I mentioned today I wish I could take a few days and do nothing but sleep and eat.
Her response was she thinks her staying with me and going and doing for her was 'good for me'.
And the other oldie response is, I can do that at the house. 😆 when she goes back up there.
No carer for respite after Feb 2nd. She has Dr's appt on that day as well. Carer will help me get her to that.
After that I will be on my own again.
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strugglinson Jan 22, 2024
Did you move her from living room to a bedroom ? At a minimum , that seems totally appropriate
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I’m not sure where your concern about being “selfish” is coming from but moving her bed from the living room to a bedroom certainly doesn’t sound selfish to me under any circumstances, Based on your post and answers below my suggestion is a change in your thinking and actions. While I don’t know anything about your mothers medical issues or cognitive ability I’m not sure it really matters here because you can’t change your mothers behavior but you can change yours.

My mom has dementia along with a plethora of other medical issues but I think what her dementia OT suggested to us applies to your situation as well, don’t over explain and instead of asking if she wants to do something just give a que that it’s time to do it, wait for a commercial, pause the tv and put out your hands to help her up and to the bathroom. Don’t ask what she wants for dinner tell her it’s ready, put the plate in front of her and she can eat as much or as little as she wants, if you want to offer her a choice make it simple “do you want peas or corn”, nothing open ended and nothing up for discussion. If she complains about what your serving let her complain and if she wants something else she can get it herself. Don’t tell her to do get it herself just let her.

Dont let your life revolve around her, her life revolves around you at the moment because that’s her choice. Presumably if she is being released from in home care it’s because she is ready to be on her own again, if she needs help nowhere is it written that you need to be the one to do that. I’m not saying move her home and abandon her but helping to facilitate the help she needs is taking care of her as well as helping her take care of herself. If she is unwilling to do the things she is able to do to take care of herself and live alone you will need to step back and let her fail. She will either start doing the things she is able or she will end up back in the hospital and in a facility but it will be her choice by her actions. Do not take her back to your house, if a long term care facility is not needed yet the object is for her to go home with whatever professional support is necessary she is not in your care. Again this doesn’t mean you step all the way out and aren’t involved it simply means that you aren’t the primary care provider. You doing everything for her is not helping her as much as it feels like it is because your moms idea of independence is directing things not actually physically doing them so if she can get you to do them for her she will, every time. This isn’t healthy for either of you and you are the only one who can break the habit. Easier said than done, I know but it sure sounds like you need to power through the adjustment for both of you. Hang in there, you can do this.

Also I don’t know if it’s the same in all states but in some when you put in an application for Medicaid and need to spend down before qualifying, the application remains open until the spend down is complete and then coverage kicks in. There are also programs that cover care and other expenses for the elderly who don’t quite qualify for Medicaid or haven’t been approved yet, you might check with your states Agency on Aging or equivalent to see what might be available to your mom.
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Rb, you have been trying for years to help your mom and she is always criticizing everything you do. I am so sorry that she won't/can't see how very blessed she is to have a daughter that cares enough to do everything you have.

She will never give you the credit you deserve and the sooner you come to terms with the fact that this is her problem and not yours, the sooner you will stop looking to her for something she doesn't have to give, that being, love, acceptance and appreciation to you for ALL you do.

You matter too and you truly have gone above and beyond to help her. May The Lord give you strength, peace and wisdom to get through this difficult time with your mom.
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Rbuser1 Jan 5, 2024
ITRR, thank you for the kind reminders.
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You are absolutely right. Your home is NOT a nursing home. Therefore you do not have to tolerate a bed and probably also a commode in the middle of your living room.

I have lived like this and there is nothing more disgusting and disheartening than someone taking a dump in the middle of the livingroom and stinking up the whole house. I totally get where you're coming from.

I don't know what it is with the elderly and insisting on commandeering the livingroom of a house to become bedroom, kitchen, bathroom, office, and public storage facility.
It's your house and you do not have to tolerate this and should not.
When your mother goes back to her house she can turn her livingroom into whatever she wants.

If she can still do for herself, she will have to. Otherwise it will be a nursing home. That's the other choice here.

Take anything social workers tell you with a grain of salt. These people are trained to lie and make all kinds of promises that they will never deliver on. They serve whatever organization they work for and will carry out that organization's agenda whether it is right, wrong, safe or unsafe for the clients on their service. Keep that in mind.

I really think based on everything you've told us here about your mother's many conditions and her severe sundowning, she belongs in a nursing home/memory care. Now would be the time to ask one of the many social workers I'm sure you have to deal with regularly for help in getting her placed.
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BarbBrooklyn Dec 31, 2023
If you recall, RB was about to have her mom sent to a Medicaid-pending bed out of the area. She decided to take her mom home at the last minute.
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What SWs want is to keep people out of facilities then Medicaid does not have to pay. They will talk a family member into doing the care with a promise of help. The help is not enough.

If Mom winds up in the hospital and is in the 3 or 4 days needed get her to Rehab. While there have her evaluated for 24/7 care. If needed, you tell the SW that Mom needs to go to LTC with Medicaid paying. Start the Medicaid application then. You can use Moms money to help offset the cost of her care until Medicaid starts. Thats how I spent down Moms money. It should take no longer than 30 days to spend down, get Medicaid info needed and get Mom placed.

If Mom does not go to rehab, tell the SW that sending her home is unsafe and you will not be caring for her. She needs to be placed. Do not move in with Mom.
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Thinking again, it seems like things might be changing quickly. Your post on 27 December expected problems “when she moves back up to her house”. It was about M’s self centred expectations. Now you are talking about alternative care options - a Medicaid application and a spend down, presumably so M can move to a facility. If this last is new, perhaps you need to come up to speed quickly on more Medicaid details.

Try the site – Care Topics in the right hand corner of the screen, then click on M in the alphabetic list. If there is a fair bit of money involved, it could be worth paying for advice. Other posters could suggest where to find it?
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Rbuser1 Dec 30, 2023
I have been doing what the Social Worker told me to do as far as when she is discharged from home health. I have someone scheduled to stay with her for my respite starting next week. Through the Senior Resource Center.
Ever since I moved her bed from the living room to the bedroom she has started her not doing anything to help herself. In fact, she is starting to get a UTI and she has hurt her ribs but mostly, just not wanting to do what all of them told her she should do and told her why.
I told her I was calling ems and she said/yells I don't care what you do or who you call.
It's serious sundowners. Also, I have told her I wouldn't be moving to the house with her if she didn't show she could do things for herself. It was an ultimatum.
I think I knew she probably would get worse before she got to move back to her house and that is why I was doing spend down and I told her also it wouldn't be before February because it was 'better' she stays here.
She told me I was responsible for her since I brought her home to my house.
She sits in the recliner and coughs and snores because she coughs all night lying on her back.
She is trying to reason out why she won't go to the toilet and not sit in wet adult pull ups.
Another thing she likes for me to do is call her sister and start getting mad and upset and her sister tells me, I don't know what to tell you.
I stopped calling her sister. My Mom gets all defensive of her sister and starts triangulating. I'm letting this play out.
if she goes into the hospital again I will let them find a placement for rehab and pay out of pocket to where ever she goes until I get another application into medicaid. Don't know how that's going to happen.
No more bringing her home with me. I have to get off the not so merry go round.
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It won’t get any better until you get the Medicaid application in and she moves out to a facility. If she is going on Medicaid, it will probably take all her funds including a lien on the house (certainly if she lives long enough on Medicaid). Is there any point in the ‘spend down’ work you are doing? Private pay in a facility is the simplest 'spend down', and might lead to a 'nicer' Medicaid bed.

A fair while ago there was information on the site about the possibility of putting ‘excess’ money into a special statutory deposit, which could be reclaimed if the amount exceeded the Medicaid ‘bill’. I forget the name, but if someone else remembers it, perhaps they could bring it up again.
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Trying to spend down. Repairs on the house, etc. Getting the heat fixed will take care of some of that spendable money.
Im just getting worn down moving her stuff from her house to my home. I don't want to live there.
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NeedHelpWithMom Dec 30, 2023
House repairs will add up quickly!

We are replacing our existing roof and it’s going to cost nearly $40,000! Ouch 😣!

It seems like prices are always more than we anticipate. If you have several repairs, you will meet your spend down goal soon!

Wishing you the best.
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Are you POA?

Are you spending down mom's money and have you got a plan to apply for LTC Medicaid?

Check out the website Out of the FOG. Good suggestions on how to deal with folks with personality disorders.
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Update.
Same bed moved to the bedroom but now many complaints about the bed.
Also, she says she has 'broke' her rib again.
She reverting back to old ways, in what she eats and told me she's not able to go in the kitchen 'here' and fix a meal or even get her coffee.
But she goes in there when I don't wait on her.
I try not to ask her anything because most of the time she lies right off the bat. But she has been that way for years. Or she asks a question back. Wants me to make all decisions because we like to eat the same things. I'm trying hard to incorporate some healthy foods into my diet.
She knows home health will discharge her next week. And she's not happy about it because they were so friendly with her. Btw they were excellent and she liked them a lot.
And I'm the bad guy.
I'm venting.
The more she does for herself the more helpless she gets, tries her usual manipulation.
I have been going out to do errands and that really bothers her. But she doesn't move from her chair.
And this will get worse?
Lord, please.
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JeanLouise Dec 31, 2023
Save yourself. Place Mom. Now.
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https://www.agingcare.com/questions/what-do-you-do-if-your-parent-is-non-compliant-with-ot-and-pt-in-rehab-484560.htm

This is the last post I could find you posted and it really does not say much. How did Mom go from being in Rehab? to being in your home? I am assuming she got PT in your home? So is the plan her returning to her home? If she has no money, then apply for Medicaid "in home" so she can get an aide.
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Rbuser1 Dec 28, 2023
She did come from rehab and stayed with me for 2 nights and back into hospital for 3 weeks. No medical reason to stay...I was doing the medicaid pending bed search and had applied. At last minute found out she had money that need to be spent down.
So I brought her back to my home. With in home care coming in but getting ready to discharge her next week because she is able to do for herself but won't because as Mom says 'I keep doing things for her so she lets me'
Now I have someone coming to stay with here a couple a days a week from local Senior Resource Center for next 5 weeks.
I am in the process of 'letting her do things for herself'
She thinks I don't need any compensation because her sister gave me money for Christmas so that is me being 'paid'. Her sense of entitlement is out of this world.
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I am sorry but you have nothing on your profile and its really hard to remember what everyone has posted previously.

Why is Mom with you. Was the bed in the living room because at the time it was more convenient to everything? Now Mom can use a walker the bed goes back to the bedroom. You tell her the more she walks the better. You disable her by doing things for her she can do for herself. When she asks for milk, tell her "you know where it is". Tell her when she returns home she needs to be able to do this all for herself. Because, you will not be at her beck and call. And he cat, just tell her your not interested. I just sat down.

You need to start thinking about boundaries when she returns home. My Mom was easy but we had one day a week we went grocery shopping and ran errands. I would call and ask if she needed anything if I was going to the store. The pharmacy was between our houses so easy to pick up her prescription but it was when I could.

She get away with what she can if u let her just like a small child.
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Your post is about ‘talking’. “She seems to get worse when she is told to do small things herself.” ...”She is impossible to talk to”. Stop telling her what to do. Instead, just stop doing it for her. She does it herself, or it doesn’t happen. You do what you want. If you are cook, she eats what she is given. If you want the bed moved, it gets moved. It’s your house, you don’t need her permission.

You say “she plans on this continuing when she moves back up to her house”. Don’t do anything you don’t want to do. The usual result is a meltdown, then a time when she “just gives up altogether”, then when that doesn’t work and you don’t rush in to rescue, you can have a more sensible discussion about care. Particularly who does it, and where.

You have no obligation to do what you are told. Find your backbone!
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Rbuser1 Dec 28, 2023
thank you.
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Why is she living with you? How will you get her out?

This isn’t working well, and she won’t get better, so start thinking about your long-term plan to find someplace else where she’ll have friends, entertainment, fun and caregivers to hop to attention.

Good luck.
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No you are not selfish.
Getting old makes people unhappy , understandably .
Some try to make the best of it .
But some are downright miserable . And some expect a servant to make it up to them . But often we find out nothing you do will make them happy .
You didn’t make her old , you can’t fix old .
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Are you selfish? Absolutely not.

There is a book called "Boundaries", and the author comments that when you put up boundaries when you haven't had them before, expect the other party to have a temper tantrum. (Paraphrasing...I can't remember his exact words, but close enough).

Good luck!
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rsparksva Jan 23, 2024
Yes....the wonderful Henry Cloud wrote that book! It is one of my faves of his, along with Necessary Endings. A favorite phrase of mine around boundaries is: "The only people who push back on your boundary are those who prefer you didn't have any." Truth.
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Whaa?

Is someone telling you this selfish?

Or is this disordered thinking, leftover from a lifetime of abuse?
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Rbuser1 Dec 28, 2023
It is, verbal abuse. I'm going to study that disordered thinking theory.
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Where do you get the selfish thought process from? It is your home, you need to have boundaries, what you do and when.

Don't quite understand why she is not in a facility where she can get 24/7 care.

Work on your boundaries, now is the time, she will continue to get worse and more needy.
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P.S. You want to encourage her to do as much for herself as is possible.
This is very important. As she asks you for xxx, "Say, oh, you can get it Mom. ... just take it slow and use your walker. I know you can do it." Do Not Argue.
Walk away or stay silent after you tell her what you want her to hear. This is empowering YOU - and HER. You are learning to set boundaries and she is learning that she can more fend for herself physically, being more independent. That's a win win.


You need to learn (that it is okay) to set limits and feel confident in doing so.
What is that part of you in your head saying to you? And who is that person?
What are your fears? guilt feelings about?

She will get worse so you need to prepare yourself now.

It is a matter of finding what works for YOU first and for her, too - depending on how involved you want to be with her care.

I don't know your story. I am only reading this post now.
When you feel confident and realize / believe that YOU deserve your own life then more will fall into place.

She will 'appreciate' limits and boundaries as she will know 'the rules.' Now, there are no rules. She is running the show. That appreciation will likely take a bit of time as she'll have a hizzie fit first as you are changing the norm - as she is used to getting what she wants.

Things like watching the cat do wonders could be meant with "I'm (xxx, i.e., reading now, busy now) ... I'll look at the cat another time. You enjoy him or her."
And/or get up and leave the area.

She will get it.
She will squawk perhaps. Except that.
Never ever argue with her.
State your boundaries clearly and if she starts to argue or wants to 'prove her point,' walk away. "I'll talk with you later." ... "I have xxx to do now."

As you feel it appropriate / possible, see if you can get a volunteer in to visit and/or take her out, if that is a possibility. She needs more stimulation - and she is currently (seemingly) totally dependent on YOU. And, that is because you allow it. She doesn't know any different - and she'll always 'push' for what she wants (why not) and there likely may be dementia involved causing fear and confusion.

Gena / Touch Matters
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You’re not selfish at all. It’s your home.

Wishing you well.
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Not sure why you are attempting this 24/7 care in your own home and asking us where it is OK to put her bed. If she doesn't like where her bed is perhaps she would prefer placement and her own room there.

It is up to you what rules you make. Don't expect her to be happy about it. Old age and preparing to die isn't all that happy a time over all.

The rules are yours to make, but you are going to need to give up expectations of happiness around them. Won't happen.
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ElizabethAR37 Dec 27, 2023
So right that the whole old age/preparing to die thing is no fun--for anyone involved! It is what it is, so we have to try to make the best of a not happy situation.
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I made the mistake of being impatient and doing everything for my Ex, since he moves SO SLOW....I sometimes wonder if it's just a game he plays to get me to do everything! It takes him a month to get out of my car!

I could be getting played. He is smarter than he acts. I hate the "slow motion" routine, it is so annoying. I'm tempted to hook a $20 bill on a fishing pole, to see if he'll move quick to catch it!
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Beatty Dec 27, 2023
I had fallen for the Go Slow act.. I had a different person stand in for me & saw the difference.
Game over. Was a behaviour problem. Wanted to test my boundaries. Ok. Did that. I now help 0%.
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Uhm, NO!
And when she moves home please set some boundaries about how much and how often you will help her.
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Two words: self survival.
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Rbuser1 Dec 28, 2023
yes
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