My mother has early-stage dementia. She REFUSES to let home health into their home or let family help without ugliness. Suggestions?

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My mother has early-stage dementia. She REFUSES to let home health into their home or let family help without ugliness. Suggestions?

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They do not both meet the requirement of failure to do two ADLs, which is required by their long term care insurance that they have paid into for many years. But, they are not showering or doing laundry. And her cooking is worrisome, with her memory loss. She is also mean to my Dad, yet jolly to those on the phone. How can we help them when she won't allow it?

Alzheimer's & Dementia Home Care Living Independently Refusing Care

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You need to get their doctor(s) involved. Document your issues and bring them up during a medical examination. Seems your mom is having issues with anxiety and agitation. Medication can help.

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Hi. I have read your responses to my posts and others. So it seems that their long term insurance may not work right now due to not being able to satisfy ADLs. I do think pursuing getting some back up from their primary care physicians is a good idea. You can at least let their doctor know what you are seeing. If they have a good relationship with their doctor maybe that will help. At least you will be creating a record to support using their LTC later. The idea of introducing a housekeeper/aide maybe one day a week as a “friend” is possibly a good suggestion and something you could work out by hiring someone on care.com or through an agency. If there are concerns about “stealing”. You can restrict the care giver to certain areas, put a lock on doors (like home offices), or just make sure valuables and important papers are put away. All of these is a challenge with stubborn seniors. But, they need to understand that poor hygiene and not accepting some help will eventually lead to hard choices having to be made - out of their control. My Dad was like that. But he has grown to like or at least tolerate the aide who comes one day per week. He did qualify for that under his LTC insurance but if he didn’t we would have paid for it. The alternative is to just wait until something happens. Sooner or later one of them will wind up in the hospital and maybe a rehab stay. That will be another opportunity to make other arrangements.

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Your Mom still appears to be able to reason. Are you able to take one of them alone somewhere and talk to them in private?

Will your father go along with your Mom if your Mom agrees or vice-versa?

It does sound like you have to convince Mom first, and Dad will just come along.

I would suggest that you take your Mom out to eat or for coffee or somewhere that you get her full attention. Then ask her why she won't allow people to help her until you finally get a reason.

In my case, after I got through all the crying, angst, etc. with my Mom, the real reason she didn't want anyone was because she was afraid they would get to know her too well, and attempt to steal from her. She doubted her ability to stop them from doing what she didn't want them to do. For instance, she didn't want the caregiver using her bathroom, her sink or her toilet. She wanted them to use the "other" bathroom at all times. She didn't want them to do the dishes because they might get the floor wet and ruin the floors. My brother at the time, pointed out that she had nothing of value to steal, however, I truly think it was the fact that she just didn't trust them.

Once she finally agreed to a trial, she realized that I was more "picky" with the caregivers than she was, and she allowed her guard to be down. My sister and I stayed overnight with her, so that gave her the comfort that the caregiver would not hurt her.

However, in your case, you might not have that option. A better option might be to move both of your parents into Assisted Living so that they can stay together, and have someone else do the cooking and the cleaning and the laundry. Then put their house up for rent.

I'm sorry, this is one of the tough parts of caring for the elderly....convincing them to do something that will make their life safer and potentially, your life easier.

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I introduced caregivers as my “friends who were coming over to help”. I was afraid I would get a bad reaction when introducing care, so I decided to get creative because my mother, eve now, says she does not need help. I say, “it is more for me since I have to work”. She thinks it is a favor for me, now her.

It’s gone surprisingly well. Not one rejection of a caregiver. Please do make sure you find on compatible to them.

If you live far away (didn’t check profile) perhaps a trip for the “friend introduction”. Just get them the car, who needs their approval. My mom is also mean to family and nice to everyone else. Your mom might enjoy it after a day or two. Good luck. Stay strong.

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Clever!

NHWM

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Aging5000: Perhaps APS will have to be called upon since both parents are beyond stubborn. OR you could step aside and 'wait for the other shoe to drop.' I don't advocate the later. Your mother doesn't have a choice by her saying "she won't allow it" since she has a malfunctioning brain.

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First of all, she had dementia so she's not in charge anymore. There is no "won't allow it" now. They have a choice though.

The choice is either cooperate with home/health coming in or APS comes in and they both get placed against their will if they are vulnerable elders.

I say this all the time. Nothing gets a senior a one-way ticket to a nursing home faster than being stubborn.

Sometimes you have to wait for something to happen before you can make a move and get them the care they need.
In the meantime, you should ask the police to make regular wellness checks on them. They will let the police in an the cops will see that they aren't coping on their own anymore and they will call APS.
This does not necessarily mean they will be taken from their home and placed. It means that they will have to accept help and they will.
Seniors will be stubborn, ornery, and even downright nasty to their families when it comes to accepting "help". They usually change their tune when it's forced on them by the state.

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I wouldn’t advocate having the police come over for a wellness check. Someone did that to my 99 year old mother and freaked her out for days. She can’t get to the door anyways, so she had to yell up the stairs at them! No, don’t get the police involved. Unless of course you don’t hear from them for days and you’re out of town too far away to check on them yourself.

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Their dementia brings fear, and other emotional dynamics as you are observing. Speak with PCP about these behaviors and concerns for further assessment of pts needs and options to cope. If you are the POA, then follow up with in home help or whatever YOU decide from PCP recommendations and, get a senior care mgr, usually a social worker to visit and assist with the needed changes. This way he/ she can also observe the behaviors. Trying to reason and explain with a dementia pt is futile and anxiety producing for them and you. So avoid it. If you think they can understand and retain information at all, ( ask PCP where they are on the cognitive scale) then you can try telling them that the in home care is for safety and needed so that they can stay in their home; otherwise tell them they may need to move into a facility for safety reasons. If they can understand at all they may be more receptive to the in home care. And at some point you may be looking at facility placement; see an elder law attorney to get best info re caring for aging.

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I don't have any advice about how to intervene with help in the home for your parents. In regard to LTC insurance, after applying 2 times for my husband and being declined, my strategy the 3rd time worked. I called our geriatric physician's office and talked to the nurse explaining that I wanted a comprehensive assessment to demonstrate for insurance purposes that my husband is not safe alone. At the appointment, the doctor had the social worker on staff administer 2 cognitive exams, she did a physical and talked/questioned him to get a read on his mental status. She wrote copious notes on all of this in his record that I submitted with application to certify his disability. It took a long time processing, but they certified his disability. My husbands policy has a daily cash benefit so I file monthly for the previous month's cash benefit and do not have to submit invoices for reimbursement for care provided. I understand that most policies are not for a daily cash benefit. However, I think safety might be an easier route in many cases to certify the disability. Your doctor is your partner in getting the disability approved.

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PS - hopefully you have POA? You may need it to deal with your mother’s lack of recognition (early dementia?) that they need to arrange for at least some help.

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We have POA. But that does let someone else in their home. We've tried everything. Looking for creative suggestions.

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ADL’s many times take into consideration that “stand-by assistance”. Is necessary for the activity to be safely or correctly performed. Are they safe with self medication administration? Are they not showering because they fear falling? Have they had any falls? Are they fully ambulatory in and out of a chair, a car, the shower, etc without stand by assistance? Not showering can lead to UTIs - it did for my mother. Are they fully cognitively intact or do they become confused about things like medication and operating things like microwaves, stoves and running washing machines? Are they visually and/or auditory impaired to the point that it interferes with their ability to perform ADLs safely in a reasonable amount of time? They paid for the LTC insurance so if they qualify to use it they should consider at least hiring an aide to come one day a week for showering, etc. On the other hand, if they really don’t need it yet, then it is a resource worth preserving for when they absolutely do. If that is the case, perhaps they could learn to accept a one day per week housekeeping service?

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I appreciate the ADL clarification. They are ambulatory, no falls, can see and hear. My Dad needs stand by assistance showering we have determined. He didn't wash his hair "because he would have to get it wet". 🙄 Otherwise, my mom cooks and shops. But she is not doing laundry or caring for her hygiene either. It's so sad and frustrating. She feels she is independent, but is not caring for herself, nor helping Dad besides cooking. They need assistance. I cant figire out why she says, "No." POA can't force this on them.

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My thought is that it will take "an incident" to get them moved. It could be multiple falls, a fall that causes some injuries, sickness from not taking meds or poor diet. Once they are in the ER or hospital, then the move to a care facility is just an ambulance ride, not a big move out of their house. This is a very frustrating phase. I am there with my very stubborn I don't need help MIL. We have defined what we will and will not do for her to stay in her house. We know we are taking some risk, but she wants to stay in her house SO bad and will probably created havoc if we move her to a care facility. I think her stage is now moderate dementia. And I bet she resists all change because she is no longer able to learn or remember changes.

Someone needs to be there to let the nurse in... don't know who that might be. Could the nurse or agency have a key to their house? A neighbor who is at home during those hours?

We are keeping observation notes on my MIL's condition. Her PCP says he doesn't need any testing as our notes are sufficient for him to diagnose her.

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Thank you. We have had family there when Home Health Care came. The next time they didn't let them in the door. We will start taking notes. That is a good idea. We are taking a risk too, we know.

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PS MOCA tests memory recall, not ADLs - there could also be mental illness or other reasons for the behaviors but the behaviors are in themselves leading them to be a danger to themselves…

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I will look into this. Thanks.

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I’d go back to the MD and have them call LTC Re ADLs
make sure they know all of it.
they paid for the insurance and you are listing more than 2 ADL needs - batheing dressing grooming light housekeeping taking medication as prescribed, even if inability is due to dementia it should be considered.
need an advocate - try the local Area Agency in Aging, estate lawyer, social worker, physician… wait and see is dangerous IMHO. Medication may help.
(Dripping water hallows out stone not through force but with persistence - Ovid) keep dripping!

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I will look for the Area Agency in aging. Thank you.

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Oh my goodness we just went through the same thing with mom. As much as we don’t want to, we told her if she wanted them gone then that was on her snd she would need to tell them. And she did! We got her a “fall alert” system. super easy to set up and then let life happen. So far so good. She had a fall within a few day of her “firing” everyone but she used her alert thing and the fire rescue came to her aid. Before all of her problems being in the hospital, after a bad fall, she would leave the house to get groceries or go to the doctors office, but after that, she would not leave the house. Not even to take out the trash. Since she has fired, everyone, she has actually gone to the mailbox and taken and brought in her trash. we all explain to her that with her decision of firing everyone, we all had jobs, so if there was an emergency, she would have to take care of it herself. We were hoping that that would convince her that she did need some occasional help. But that has not been the case. Ha ha ha. Mom is a stubborn gal. She said she would let us know when she’s ready to go to assisted living, and that she does feel like she needs a smaller home. But she is not ready to go to any place for assistance. I called her every night to make sure that she is eaten at least once whatever she eats, she eats. Sometimes she eats a lean cuisine and a popsicle, and then some time she asked me to DoorDash her a big meal. I am more than happy to do that for her. She does have memory issues, but I think it’s more to her age because she is 85. I agree with what others have said here you just gotta let it go and let it happen. That was very very hard to do. I am here to tell you. It is very hard. We only want the best and safety for our parents. Even if they treated us like crap growing up. I think because we kids did everything we could, or that she would let us do, I do not feel guilty anymore. We would jump if she needed help of course but we are no longer trying to thwart it. It is what it is. Her life the way she wants it even if it’s not healthy food wise or clean wise . She will not even let me send over weekly house keeping.

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Just want to add another item for consideration as your journey continues. My Mom refused “help” also. I introduced her to a “friend” (in reality a compensated companion). After a few intros as my friend, K started “dropping by” Mom’s to go for a walk, see if she needed anything from the store, etc. They eventually began occasional cooking meals together and it worked out well…until K moved.

When we noticed medication consistency lapsing, we bought Mom an Alexa and programmed reminders. You could do similar for meds, laundry day, put the trash out, pm safety check—-doors are locked, faucets and stove off. We kept Mom in her own home 700’ from us until it was no longer safe. She is thriving in AL. Best wishes as you journey.

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My parents & aunt were adamant about no strangers coming in.

We started out saying the caregivers were going to come and do a little housekeeping & laundry. Slowly the caregiver started assisting with bathing & meal help.

Once they felt comfortable and liked the caregiver they enjoyed a friendship & looked forward to them coming.

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That was exactly our intent. It's a good plan. She's a brick wall.
I guess we will have to get the In Home Health care order reinstated when she finally relents. She currently sees nothing wrong with their lifestyle. Thank you.

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Your only choice is to let events take their course. Unless your parents fail competency tests, their lifestyle, while worrisome, is not your choice. Let your dad know you will help him if he asks you. Let them both know you are available only for some specific tasks. As an "elderly" person, I plan to live independently as long as I can and would vigorously resist someone coming into my home without my consent. My mom also refused help until age 97 when she had a stroke and passed in hospice shortly thereafter. She lived on tea and peanut butter toast.

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I agree and have seen this topic addressed many times here that one cannot force their help on a senior parent unless they are deemed to be incapacitated, yet there’s a large percent of folks who don’t accept that reality and try to find other ways around it, such as possibly giving an agency a key to their parents home so a caregiver can let themselves in. I think in most cases this type of coercive or forcing will only make the parent more turned off to it. If one thinks their parent needs help to the point they’re considering giving someone else a key to let themselves in their parents home they legally need to get conservatorship first but many folks don’t want the hassle and stress of that legal process and instead continue trying to go around it. I understand being worried but if one is truly worried about a parents ability to remain in their home and take care of things the bottom line is either accept it, offer help but it’s up to the parent to accept it or get conservatorship

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She was tested by a neuro psych. It was nearly a three hour test. I can check again to see if there is anywhere else she may be tested, but I don't believe there is. Dad is in need of assistance with hygiene. He puts up with my mom's behavior and moods, because he always has. He is terribly passive. We cannot force the to accept help. Waiting for something bad to happen feels like neglect.

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So did she pass the test and was found to not be incapacitated ? Is that why your trying to find another doctor to find a doctor who will give a different diagnosis ?

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"I am starting to think this is more of a personal choice or power struggle for control.."

Interesting...

Stubborness.. Anger? Fear of change? Fear of losing control?

Sometimes people think: If I don't accept help = I am independant. This is faulty thinking.

If I am become hearing impaired, I can choose to get advise to see if hearing aides will help me. If so, I can wear them & (hopefully) hear better.

Refusing hearing aides will not mean I can still hear.

Being open to change takes bravery, strength & trust.

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Thank you. Perhaps telling her "refusing help does not mean she's independent" could help. I try to stay on the motivational side, though, than saying what she is "not", because she is so very defensive. We can't force her to accept help. I don't understand not accepting help when you know you need it.

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It took many falls, including in the bathroom for my LO to accept help. Choice: Accept help or move into care.

Happiliy today, LO loves the 'ladies' (& the occassional man) that come. Trust was gained & they provide excellent company & assistance.
My LO is happy for others to do household chores, laundry & any other boring tasks.

However, if you have a housepround housewife who's identity is connected to keeping house herself - this is different.

Still need to build trust, but the worker will need to involve Mom, let her think she is in still charge of the task.. they can do *together* rather than the task bekng taken over. As trust grows, Mom can let go a little. 🤞

We had to install a keybox for EMS to gain access. (Another choice: agree to the keybox or lay on the floor forever).

The care staff also use the keybox now. (Another choice: let staff let themselves in or risk them leaving when not let in)

* Staying home as long as possible *

At some point, the line into *not* possible is in view. I see it not far ahead..

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Thank you for the suggestions. I agree with you that it is only a matter of time.

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You can't help them. If everyone is helping them keep their make believe independent life intact, they will never agree to outside help.

I would have everyone back off, let them flounder and see what happens. Maybe the light bulb will go on.

Whatever you do, don't let them move in with you. That would be a very bad move.

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Nobody is really helping them now. Thays the problem. Only my brother and his wife are involved ad POA. Med checks for my dad is about all that is allowed. The lightbulb is not going on. She ignores what is not done or cared for, except my dad's meals. Hygiene help is most needed. Perhaps they can get another order for in-home health from his doctor, but there is a high need and low availability. Getting them in the door is the problem. I think my mom could grow to appreciate it. Irony... she was a paid Visiting Angel in her last job.

I am in another state. My brother has poa and lives there. They will never be allowed to move in to his home.

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maybe your parents should not be the responsible parties to let anyone in the house. If their brains are as you say, they may not remember or feel threatened. If the caregivers are expected, perhaps someone else can be hired for 30 minutes to screen who comes there?

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Perhaps this could be done. The logistics are difficult as the in-home care appointments change every week. The problem is getting the hired one in the door first.

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"My brother and his wife do all they can.."

What would happen if your brother & wife stopped helping?

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Get your parents a geriatric neuropsych assessment. Find the best teaching hospital in their area and call their Geriatrics/psychiatry/neurology departments and find out who does comprehensive assessments of elders with dementia. This is usually a multi-disciplinary team effort.

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As Againx100 asks;
"How did LTC determine that they could do their ADLs when you're thinking that they're really not?"

This seems important.

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I'll add on my experience..

A Functional Assessment (or needs assessment) can uncover the independence level. I think it was a SW or could have been an OT that did one for my LO.

Meals:
Self reports: Can cook. All sorts of meals.
Family reports preparing breakfast, sandwiches & reheating frozen meals.
Observed: cupbboards contained poor quality breadfast cereals, evidence of takeaway meals, fridge has over use-by items.

It goes on, personal tasks bathing, toileting, medication. Household tasks, cleaning, laundry. Community tasks, shopping, socialising, transport. Financial matters too.

It can be personal choice to eat frozen meals, not bathe or change clothes as frequently as relatives would like.

However, not taking medication, not using walking aides, not keeping hygenic, not eating/hydrating well all become 'risky' behaviour. Increasing risk of falls & other calamities.

They grey zone between *living independantly* & *not coping*.

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Another thought. If they don’t BOTH meet the criteria, start planning for them separately. Getting help for ONE might help a lot.

Right now the person with dementia is running the show. You’re the one to stop it so they can be safe and live their best lives.

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There are plenty of ALs that welcome residents’ pets. Make sure your parents know that and repeat it often.

You can’t reason with dementia patients, though. This is dementia. From what you describe, I have no doubt. Proceed with that thought.

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Would your mom listen to a doctor, Pastor, Rabbi, or some other respected person?

Can you get her to an exam or meeting with one of those people? Would one of them come to meet with your mom at her house?

Cxmoody
7/28/23

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Good idea. But, she does not respect anyone else's opinion or direction. Reasoning with her, with the dementia, is not possible. Im starting to wonder if maybe this is more of a personal choice orcontrol issue with her than dementia.

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So many of our parents do not want to accept help. Mine would accept it but question it and complain about it. Luckily she's a bit of a people pleaser so she didn't take it too far.

But for you - who IS providing assistance to them? You?

How did LTC determine that they could do their ADLs when you're thinking that they're really not? That's annoying.

How long have they not been showering? Why did they stop?

I put child locks on my stove for my mom when her dementia diagnosis came through so that she wouldn't burn my house down. When their memory is bad, putting something on a burner and walking out of the kitchen is a real concern!

Is she still deemed to be competent? Does anyone have POA?

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I am not providing assistance. I am out of state. My brother has POA. He handles all finiancial decisions. My mother has not yet been found incompetent. Neuro psych tests are scheduling a YEAR out. She has passed twice. We have no idea how. She canceled my father's last one when they called to confirm his test.

Over time they have chosen not to shower. Their "assistance" is only happening for my father, who is agreeable. My mother will accept no help. She "can do everything by herself". She is basically being neglected because of her attitude. She does not take her medication, does not bathe or do laundry very often. Their diet is poor.

We would like to keep them in their home, with in-home health. She is relentless in her opinion of her independence. I believe it's all fear driven. She is verbally abusive, DEFENSIVE, and only blames others. The fight will be the burden on my brother who has cancer and does not cope well with the family stress.
We have found no approach to get her to relent to help. One would think they would glady accept assistance. I am starting to think this is more of a personal choice or power struggle for control, than dementia.

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Do not have parents move in with you .
sounds to me like they need live in home care or assisted living. Sounds as if Mom may need 24/7 supervision to be safe at home and it may be too much for Dad to handle.
Call your local Agency of Aging . They will send a social worker to assess their needs. Perhaps the social worker can talk Mom into allowing help in the house , or assisted living if that is needed.

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Showering or otherwise keeping clean is an ADL. You indicate that she may not be able to feed them either.

Lots of people say that their loved ones have early stage dementia. Maybe that’s a way to deny what is really going on. I don’t know in this case, but it seems like more than early stage from what you describe.

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My mother has early-stage dementia. She REFUSES to let home health into their home or let family help without ugliness. Suggestions?

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