My mother needs in-home care to come and help with meds/meals and just a few light issues during the day. Side note: I do not live with my mom. She refuses home health care, says I am trying to put her in jail and she doesn’t want anyone there. The doctors say she will need help “soon.” In my opinion, soon is here because she is either completing tasks at a snail’s pace or procrastinating all together until the last nanosecond and then crying for hours or throwing a tantrum like the worst behaved toddler ever. How do you help someone with diminished capacity who doesn’t want anyone’s help?
1. I had several conversations with my mother explaining why someone needed to be here while I worked. I received pushback and kept the conversations focused on safety for her. Such as what if she fell , had a medical emergency. I assured her the caregiver would be more of a friend she could talk to and be there if needed. My mother is independent but needs helps with cooking and monitoring for falls (short term memory loss right now ) Using the term companion care helped rather than caregiver.
2. Once I chose the caregiver she came for 1 hour a day every other day to visit and get to know my mother and her needs over a 2 week period. I was always present . The caregiver was aware my mother would pushback and was experienced with dementia and how to handle it reinforcing safety and calm talk while also acknowledging my mothers needs to be independent .
3. Slowly increased caregivers hours over 2 months while I was present. Again a slow progression of leaving my mother with the caregiver.
Because of mother’s short term memory I always reminded her the night before and the morning of caregivers arrival .
I continued to get pushback during these conversation and sometimes when the caregiver was here. Reinforcing safety for your loved one and patience during these conversations is key.
Listen to theirs concerns and fears letting them know you hear them and focus on their particular needs and safety.
Remember….they might forget or get confused at times. Keep your answers simple and consistent with your previous conversations .
I reinforced with my mother, what if she fell or had a medical emergency , no one would be there to know or help. I didn’t go into specifics. I told her I loved her and couldn’t allow something like that to happen to her and this was my part in taking care of her.
4. Learn to be flexible on this journey. It’s difficult for the patient experiencing it and the family members that want to help.
Feel free to message me as I’m unable to explain my entire experience here. These steps are only the beginning of our journey, it has progressed since then . I’m open to any questions you have about my experience and how I chose a caregiver for my mother’s particular needs.
You take it a moment at a time, a day at a time while things change and progress and plan the best you can based on your loved one’s circumstances 💜🙂
Up until about 3 years ago, the mother handled 100% of the sister's care as well as the home and finances. Now, the sister needs to do at least the "bare minimum" to care for mom and keep the household going, which consists basically of light housework, laundry, shopping, meals, etc. Beyond normal household logistics, Mom needs relatively little care at this point, other than supervision to make sure she doesn't fall, someone to make sure she remembers to eat. Other than a few vitamins, Mom is on very few medications (baby aspirin and gabapentin).
Complication is that the sister has completely rebelled and refused to even do the things that would be required for her own personal daily living if she lived on her own. Sister says it's "not fair" that she has to do thing for Mom, although those things aren't really that much beyond what would be required to do for herself. Neither will leave the home (Mom for AL, sister for psych facility), and are demanding that I quit my job and move 1000mi. cross country to take care of both of them. I have hired in-home assistance for Mom; sister has chased 3 of the providers out because *she* didn't approve of having strangers in the home.
Further complication: sister has been forging checks from Mom's account, using Mom's credit cards at will for her own personal purchases/entertainment, etc. She routinely withholds mail, bills, etc. from Mom (to conceal the unauthorized spending on the credit cards), so household bills aren't getting paid--I'm trying to take over doing that from afar before things get too overdue and utilities get shut off, etc.
I've tried contacting Mom's PCP and associated social work office, state Adult/Elder Protective Services, etc. So far, can't get response, callbacks, or meaningful action out of anyone.
Stop helping her.
She is making a fuss and it seems to be working. She will continue making demands as long as it is getting her what she wants.
She can accept the in home care provider, or chase them away and try doing it herself. Yes, she may be unsafe living on her own without help.
Do you (or someone) have POA or medical POA?
If you do, then it is your responsibility to provide what you think is the best care and treatment for her. It is not your responsibility to provide that care yourself. But you would have the responsibility to hire in-home care or place your mother in a care facility. She will object, but she has no say if she is mentally incapacitated.
Without medical POA, you can let her live on her own, as unsafe as you think it is, until an emergency event lands her in the hospital, and make the decision from there as to where the hospital will discharge her - likely to a long term care nursing home. For some stubborn elders, this is their fate. They insist on living independently until something bad happens.
As long as you are propping her up, she gets to entertain the illusion that she is able to live independently.
they work with you or the law intervenes
sometimes you need to be cruel to be kind
in the right measures
I am concered about you & want to help - but I cannot run 2 homes, cannot move in & cannot be on 14/7 call. Let's look at how to get the care you need.
Offer choice. @ Home (option A)
I can help set up Home Care Services. This company or that company? Start a trial.. eg for light cleaning, groceries, some personal assistance. But if this all sounds too hard to do, hard to set up & hard to manage.. many people decide to move (option B). Let's look for a place to live with the help there: meals provided, bills included, activities & social groups.
A friend did just that. On one visit he found his Mother not coping: teary, stressed, overwhelmed by home maintence issues piling up. He knew it was time for her to *downsize*.
They did the lunch tours. His Mother chose a place. This was crutial - he did not want to be blamed forever for 'putting her in a home'.
If Mother had decided NOT to go ahead on that visit, he would have flown home & waited. The seed had been planted.. "Well Mother, you could move.." would have been a familiar reply. Sometimes it takes a fall or other health event to change a mind. (In my family it was the Ca Dx :( that did it).
But also, there is the cognitive impaired that can't/won't decide. This gets tricky. It call lead ro *awaiting a crisis* to force change.
Twilightgirl, I hope your Mother is flexible enough to be led to a solution.
~Nothing gets a senior a one-way ticket to a nursing home faster than being stubborn~
Make it very plain to your mother that she either accepts and works WITH outside homecare help, or you are walking away. When she's working herself up into hysterics and having a tantrum, you should be ignoring her anyway. Make sure you start ignoring her when this behavior starts up. This is a manipulation tactic to get you to do what she wants on her terms. Stop playing her games. I have another saying that I have told many, many seniors and their family caregivers.
~Caregiving only works when it's done on the caregiver's terms. Not the care recipient's~
Your mother and yourself need to understand this because it's true. You stop propping her up and putting out her fires for a while. When she starts up with the hysterics and tantrum you tell her you don't want to hear it and you won't be coming to help her. That she has a choice which is accept homecare to help her live safely in her home, or deal with the consequences she causes for herself on her own. Then do not go there and do not help her. You do not listen to her complain to you, or cry, or carry on. Sometimes with this kind of stubbornness you have to let the person fail for a while.
Please show your mother this post. It comes from a person who has seen many seniors like her get put into nursing homes permanently because of their own stubbornness.
She can afford the best, so we took her to tour an independent living facility last night. The community is fairly new and absolutely beautiful. She scowled practically the whole time. It was quite embarrassing, although the staff member assured us this is a common occurrence.
Not looking for any advice here - just venting. I think we all know we may need to set her up the best we can - and then let her live independently, like she wants - with us walking away.
My heart hurts - but she really doesn't care. Her possessions and house mean so much more to her than we do.
Thanks for listening.
She refuses home health aides because she wants to force you to do it all. Step back , stop helping her . And like Barb said , tell her you can’t do it anymore .
Tantrums …… She is beyond part time home health anyway. She can’t cope living alone . Mom needs placement, IMO.
A senior having tantrums doesn't mean they're ready for memory care or AL yet. Believe me, the tantrums and hysterics stop when they get no attention. When there's no audience, there's no performance. My mother still tries with the occasional tantrum and hystrionics with me and she gets zero reaction or attention from me and is coping just fine with her homecare people.
Homecare can work and it's worth a try. The mpther may need a live-in companion to move in. Assisted living could be a good option if the mother can afford it.
Ask mom what she wants in the event of an emergency. You should have this information anyway.
If mom asks for your help do what you can when you want.
If mom needs more help and she refuses, when she falls or otherwise is hospitalized you make sure that her care team knows that she does not have help at home and you are unable to help as much as she will need so you can not be responsible for her care.
Currently if mom is actually completing tasks even though it is done at a snails pace be glad that she is actually completing the things that she has started.
Other tasks if they are delayed don't worry about them. (unless they are urgent.) If they are tasks related to appointments then she may need to be reminded much sooner. (have it written on the calendar a day or two sooner than she would normally have to start)
If you do not think mom is safe then you can report to APS as a vulnerable senior that is at risk. But from what you have described it sounds like she is able to do things it is her time management that is a problem. (If she has always been like this she may have undiagnosed problem like ADHD, Dyslexia or any number of problems that are being diagnosed in adults now)
I am a CNA and Home Health Aide and have been working with seniors who refuse to go into a care home or have been there and returned back home. This never works. What happens is that they fall into a condition called self-neglect. Many of these people have mild cognition problems and just aren't functioning at a level where it is deemed safe any longer. The home care agencies are aware of this and will keep sending aides in these homes knowing that once an aide leaves after a shift, the client is on their own, They will have problems getting meals prepared while trying to navigate a walker or cane, problems with toileting resulting in accidents, house clutter, unable to walk up and down steps to do laundry, and unable to pay their bills and house taxes in a timely manner.
Sending in an aide can only cover the basics. However, these seniors need help managing their finances and other areas of living. It will become too much for any adult child to manage two households, marriage and job for the long term. Some caretakers may even have children still residing at home.
There are no easy answers for stubborn seniors refusing to see what poor conditions they are actually living in. They live in denial because a family member is being a prop. I've had seniors actually think they are doing all of the work in comparison to what I'm assigned to do while I'm on shift. These people do very little for themselves and most of them can barely make it to the toilet in time before having a bowel explosion all over the bathroom.
I started out in this field of home health care in the mid eighties. Seniors were a different breed back then and many went into care homes once it was time to give up their homes. These seniors weren't as entitled back then even though I did run into one case where the client was set on doing her own thing at times. She eventually ended up moving to the "Big Apple," into a nursing home. Her nephew moved her there to be near family.
People are living longer to the point that the medications still keep the heart pumping even when the brain is no longer functioning. Some of these seniors have better lab results and blood pressures than their caretakers.
When it comes time for placement, it is no longer about trying to maintain what is best for the senior. Placement is not the end for them or a Way Station before the final plunge into the abyss. They will get their three meals, have a bed and pillow to lay their heads and twenty four seven medical care. There are activities planned for them to enjoy.
However, caretakers may hasten their own demise if they don't learn to put first things first, and that is making sure that their own health and safety is intact. At this point, it is coming to the grim realization that we can't continue on this treadmill of putting ourselves last. It is now about our survival and living out our lifespans to the best of our ability.
We learn how to get out of the "FOG" of fear, obligation, and guilt moving towards acceptance of knowing that we've gone as far as we can with this journey. Life happens and cycles. These parents are in their twilight years and are almost in completion of a life cycle. There is no getting around this, and no amount of fear, obligation and guilt is going to change this.
When it comes down to stubborn seniors and their wants, do what is best for you no matter how much they protest. Some people you can never please.
Just realize, you've reached this point and now it is time to make a decision.
There is a huge entitlement problem and expectations these days with many . My mother and in laws were terrible . My father was the only sensible one.
And now my sister with dementia is giving my nephew a bad time .
I agree that we have to take care of ourselves first . At some point it comes down to self survival. And I agree it’s pointless to try to make them happy .
After my mother was placed she was absolutely horrendous. I resorted to telling her
“ I did not make you old Mom. And I can’t fix old .”
If I could , I would give Scampie an award for this accurate take on caregiving these days.
Make sure that you have the ability to use her accounts. Do you have POA? If not then you will need to go to court for guardianship. Once granted, you will have access to her funds including the ability to pay those legal fees.
Another alternative is to step back until she becomes hospitalized then claim unsafe discharge and that she has no one to care for her at home
twilightgirl says she has diminished capacity, not dementia.
Assuming that there are no "get out of jail free" cards in play, you will need to try something else. Answer this because I know you know the answer: Who is propping her up so she can avoid home health, a care facility or dying? That's you, m'dear. Yup, for sure.
You won't change her behavior, you know that. You must change yours. That means stop propping. That means getting a doctor to write orders that she needs to go into care. Or it means next time she throws a tantrum, you call 911, say you can't help her, she's having a psychotic break or a hissy fit or you don't know what's wrong, you're so frantic, please help her, and she goes to the ER. Then she never goes home.
These aren't easy solutions, but there are none. Many of us have been through similar. We just have to suck it up and get rid of the problem somehow. You've got good ideas offered here, and I wish you luck in finding something that will work.
My aunt fully belongs in a facility. She is adamant that she will not leave her home. It was hinted that I move in and take care of her. NOT. She doesn't want help from anyone. I believe my cousins hired part time assistance for her, which, in my humble opinion is not enough.
I think in this case, like everyone else said, you need to step back and let the chips fall where they may. There isn't anything that you can do.
I had a POA, but it didn't go into affect until she was declared incapacitated. I was told to go to court with her and fight with her to get her into a facility. I don't live in the same state as my aunt and I didn't have the money, nor energy to do all of this. I also work.
I stepped back. I think that is your only alternative.
Period.
And I doubt you can afford 24/7 safe care for her.
Exclamation point.
Your mother is refusing to hire in help and care.
As long as this is HER DECISION and not YOUR DECISION as POA there is absolutely nothing to do but await "the call".
"The Call" comes from either hospital ("We have your mom her in ER") or coroner ("We are so sorry to have to tell you that....") or neighbor ("Oh my God! Irma has fallen on the patio. There's blood everywhere".)
Then you will act.
It is either that, or, if mom is still able to compute what you are saying, and what the doctor is AVOIDING, you have the sit down with her that she is no longer safe. That if she will not accept help now you will back away, as you are enabling her very poor decision to be alone.
Only YOU know what mom is up to daily and how things are going. We don't have a clue. But the time of few options is here. And the times of decisions and who will make them is on the doorstep.
If you simply await "The Call" then when she is in hospital (if she makes it there) you will have the Social Workers to help you arrange the letters for POA, and to arrange safe placement for you mom.
If she doesn't make it there because she chose unwisely to stay home without help then understand that may be her preference. I am 83. More and more and more I understand the option to leave your home feet first, rather than spend another year or two where you don't want to be.
That's the facts. They are brutal. Truth often is. Not everything can be made happy-all-the-time, or even "fixed". I wish you all the very best. There's no black and white in this stuff. It is a fog of grey you can't see through.
what you say. Thank you.
I called the County Agency of Aging .
A very wise social worker told me “ stop helping , let her fail . “ The social worker came out to my mother’s house and deemed her unsafe to live alone . This is how I got mom out of her house and placed in assisted living .
Look on your mother’s county website under elder services , or dept of Aging etc . They are called different names in different areas. Get a social worker to help .
The short answer is...you don't.
Often you just have to wait for an "incident" to happen(and guaranteed it will sooner or later)before drastic measures can be taken to ensure their safety and care.
But until then, you just sit back and let your mother dig her own hole. You don't offer to go over to help her, nor do you continue to enable her in any way, as then perhaps she will come to the realization that she really does in fact need help.