Is it too late to stop enabling?
I fully admit that I have been enabling my mom for the past year and now I am getting to the point of total burnout and resentment.
After several nuerologist appointments, the Dr. determined that mom does indeed have dementia with strong indications of Alzheimers. Dr. strongly suggests that we look into AL that can transition to MC. I have found a place that I like and her brother is already there. Of course mom is refusing to leave her house.
I am guilty of enabling her. I visit at least twice a week ( I live an hour away). I took over all the finances, set up her meds, do all the food shopping, look after her dog ( big mistake she made 5 yrs ago bringing home a puppy she clearly cannot care for in a consistent manner) set up and take to drs appointment, and hired an aide that comes in twice a week ( that took several months of convicting).
After juggling a house and family of my own, a job and some of my own health issues I am at the point of deep resentment and know that now is the time to make changes. We have cameras in the house and I can see that she moves around the house and eats constantly when I am not there. There is also evidence of incontinence ( which she denies).
I would like to move her to the AL that her brother is in within the next month. My sibling offered to take the dog in. She is refusing to even submit to an evaluation ( which is required).
Should I back off entirely and leave her to her own devices until an eventual emergency? What about bringing her food, keeping the aide on? Let it all go?
I asked the neurologist to write mom a note stating that she is not safe at home anymore. The dr did write the note and all mom can fixate on in the note is that the Dr. wrote that she " recommends" that mom move. Mom sees that word as an option and not an order.
Is it too late to back off entirely? Or, do keep doing what I am doing with the hopes that white lies will get her in to the AL.
I am the POA. I do have about 2yrs worth of her savings to pay and plan on selling the house after a year ( tons of clutter and time needed to get that ready)
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The AL progressing to MC is a great idea, and once you get her in there, you'll heave a huge sigh of relief. So keep working toward that. Also, the neurologist could write a stronger note, since she's hung up on "recommends." It could be handled more like an order for care, such as they write to get patients into rehab or something like that.
Add more visits to brother that include her in activities with him, such as outings or musical events held on the premises where he is. You and mom could be there with him for meals. (Arrange all this with the facility beforehand.) Once she's going there a couple of times a week for a while, one day she gets taken to her room there by a friendly aide, and you are nowhere in sight. She stays there until "doctor says you're strong enough to leave" (which is never).
If she refuses to visit brother and won't participate, I suggest that you suspend or decrease your visits to her. Your explanation is that you've tried the best you can, you are not available anymore due to family responsibilities, and you hope she has a nice day. As others have pointed out, you cannot reason with a person who has dementia, so try no longer. Let it be what it is.
Eventually something will happen. She'll fall and end up in the hospital and rehab, or she'll start running up and down the street naked as my neighbor did, or, as my husband did, she'll wander and end up as a Jane Doe in a hospital ER after being picked up by Good Samaritans. That's when she will have NO choice in the matter.
I'm so sorry you're dealing with this. You are a kind and caring daughter, and I wish you luck. (Also, footnote: You won't be able to keep mom happy no matter what you do. She has entered the dementia zone of NO MORE HAPPY and she's playing it for all it's worth. Accept that because you might as well not fight it.)
Good footnote to add that many are never happy no matter what.
"If that's what you wish to do mom, that's your right."
"I love you, mom, but my family comes first."
"Mom, I can't do this anymore. You'll have to make other arrangements or let me help you make them."
Repeat as necessary. Trying to reason with someone with dementia is useless, so don't do it. Make your statement and take your leave.
A roof, plumbing, painting...make it something that is actually needed for when the house is sold. (I presume it will be sold to pay for her care)
That way you can tell mom that due to the repairs she has to move out. She can stay in the same place her brother is. Call it Respite stay"
During the stay she can be evaluated.
The repairs can take a bit longer than anticipated until you simply tell her that she is safer remaining where she is.
I would have the doctor on the next visit remove the "recommend" wording if that is what she is focusing on.
If that doesn’t work , back off and let her fail . I was told to stop helping by a social worker when I called the County Agency of Aging for help to get my mother out of her house to assisted living .
The social worker came out and assessed my mother , interviewed her with questions about emergency and non emergency scenarios
“ What would you do if …….?”
Mom could not answer or “ come up with a plan “ , for scenarios. The social worker deemed her unsafe to live alone .
The social worker was willing to return in 2 weeks with “ strong help” to physically remove my mother from her home and bring her to assisted living on an agreed date between the social worker and the facility .
This was 2017 though . Things may have changed as resources are stretched thin as well as the bar seems to be lower these days for elders to stay at home . Something we have seen the last few years with other family members .
Good luck .
Doctors are afraid to absolutely tell someone they have to go to a facility . Makes it hard on the families .
Just take her for a ride to visit brother and tell her this nice person is going to talk to her. When its time to place her, again she is visiting with brother. When you get there, with help of staff, you tell her this is where she needs to stay a while so you can go on vacation. Then allow the staff to take over from that point and stay away for a few days so she can acclimate. Then it maybe white lies after that when she asks to go home. "The doctor thinks its good that you stay a little longer" "I am still vacationing but thought I drop in to see you".
I read these stories and it’s not always that easy getting them through the doors of a facility . Even if I had gotten my mother in the car, she would have refused to get out of the car when she saw the facility .
Even if I had never discussed with Mom to tour a facilty or for her to “ pick where she wanted to go in an emergency “ , my mother still would have refused to get out of the car on a cold white lie .
My best bet was to tell her she had to “ tour and pick out the one she liked just in case an emergency happens “ , to get her in the door and leave her there . It still failed .
My mother would have refused to visit a sibling either due to her paranoia of being placed . My mother would have never fallen for the “ this nice person is going to talk to you “ or the “ you have to stay for a bit while I go on vacation “ either . She would have bolted for the exit .
Of course after Mom was placed , she complained that she didn’t get to pick it out ( the facility ) . I told her “ Sorry , I offered you that opportunity and you refused “.
Tell mom that you can no longer manage both households and that she needs to make a plan for her care that doesn't involve you.
Do this kindly and with compassion, but stick to your plan and allow mom to sink or swim on her own.
I have said this exact thing to her and her answer is ok, I'll just sit and wait to die here. I responded that it doesn't work that way.
Is it cruel to then stop food shopping, dispensing meds and fire the aide? This is my moral dilemma.
Burnout is serious and effects could be staggering so you need to put yourself first.
I am experiencing mental exhaustion call it burnout or whatever.
I have therapy as although I have no guilt and help with physical aspects of care I tend to overthink everything and worry constantly.
One told me this week when I started with disease or some issues: No, stop!
It is about you!
Actually, I am getting another therapist this week, idea is to work on how to grieve parts of my life lost, this is not the same as grief of person lost.
It is what deep down we all know how we are loosing parts of life or certain aspects of life. It is about rebuilding life.
Caregiving certainly makes us disappear in some ways.
You need to find your own way and put yourself first.
As POA you are not responsible for her care, you have fiduciary duty of care, but you are able to assign other responsibilities.
Thank you for the POA reminder of duties. For some reason I keep thinking it also makes me responsible for her care and finances.
This is the usual pattern with caring for a loved one with a degenerative disease. The trick is knowing when to stop the hands-on caregiving and juggling of "sticking plaster" solutions and switching to some form of residential care.
You have POA, so make sure you know the conditions for when that comes into effect and what you need to do. It won't be easy, but you will be able to make decisions for your mum, such as her undergoing whatever necessary evaluation and moving into residential care. You can ask the facility about how to put this into effect when your mum is resistant.
I would never stop essential assistance. The shopping and help from aides are essential and should be paid for from her own money. I would limit your visits to once a week, though, if you're struggling. At the first sign of crisis, you evoke the POA/call emergency services/social services and get mum moved to a suitable facility.
I think most caregivers struggle with this stage - when to stop enabling someone to continue living at home and to take full control of where and how they live. It's rarely easy and it's often messy, even with POA.
My advice regarding the clutter, once Mum is out of her house, is to pay a professional company to sort it (out of your mum's own finances). You will be exhausted and in need of a break when you have finally managed to move your mum somewhere suitable; sorting out her clutter could prove way too much for you. It's the least important thing, so don't stress yourself over it. Also, you don't want it taking a whole year before you can sell the property to pay for your mum's care.
My stepdad would also fixate on a word, like this, and use it as an excuse to not do the most sensible thing but to keep doing things his own way. There's no getting round it.
You could ask your mum's doctor to verbally tell her that she needs a residential facility, or that "it's time".
It is unlikely you'll ever get a doctor to stick their neck out and state an opinion as fact in a written note, however desirable that outcome is. They have a professional standard and there are lines they cannot cross.
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