She is 83 and has dementia, but we’ve made it this far with me doing all her shopping, caring for her home, paying her bills, and bringing her freshly made food for every dinner. My sister and I also fully support her financially. We drive her to doc appts and haircuts. She has always disliked people in general, and doesn’t want to speak to anyone besides my sister and me. She hasn’t had so much as a meal with anyone else in 20 years. Being her everything has been an incredible burden to us both, made even harder by her being very unpleasant.
in the last few years she has been getting false memories of conversations in her head. She then takes to the phone to complain about all these imagined horrible people. Yesterday she wanted me to call the post office because her mailman accused her of coming onto her. Of course this didn’t happen in any remote way, but the moment she thinks it up it’s reality to her. She almost lost her saint of a hair dresser, who cuts her hair every three weeks for $15 (!), because she kept accusing her of stealing her watch. This continues even after I found it in her trash (“she must’ve brought it over here and put it in the trash!”).
As you can probably tell from
this rambling writing, I am almost at the end of my rope!
She can’t live with me or my sister, it would destroy our mental health. But she refuses to talk about having other help come in, and of course assisted living is out of the question as far as she is concerned. When the issue is eventually forced, it will be an awful confrontation.. I don’t know what to do! Thanks for letting me vent.
28 Answers
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She is out of funds.
She is being enabled by you and your sister to live unsafely.
You are wearing yourselves out and you are spending money you will need badly for your own elder years.
How does the above make any sense.
I recognize your mother doesn't want placement.
No one wants placement. I am 81. She has my every sympathy, but to think I would destroy my own daughter best years of freedom from the care of children and elders, to spend in her own retirement with her hubby doing the things they have waited a lifetime to do? That would destroy me.
I recommend you and your sister work now on placement and on diagnosis so you can do so.
It it time to have the hard discussion with your mother.
If she cannot any longer participate in this difficult discussion it may be time to call APS and let the state handle this.
Unless you are up for another decade of this, with increasing problems, falls, fires, wanderings.
Only you two can make this decision and I am thankful you have one another to lean on one.
First discuss with Sis and with your respective support systems.
Then plan a way forward. Or plan to stay mired where you are.
I am so dreadfully sorry. Not everything has a good fix.
I agree with with every word, including that we are enabling her to be unsafe! Sometimes I can’t believe this is me. As you say, no easy answers. (And you are correct that my sister and I are incredibly lucky to have each other. Life can be funny, our closeness was forged very early as we leaned on each other to deal with our eradic mom, since being young kids. My sister will always be something I can be wholly thankful for from my mom.)
BUT this is where I learned to tell her that she has tested moderate to severe dementia, the doctor says you can no longer live alone, we need to think about this now. And I stuck to my guns.
She was so far gone, when I had to decide what furniture would be moved, I just told her I was cleaning, clearing a path, because all these piles are unsafe for you. She was fine with it.
When the day came to take her in, I enlisted my cousin, and we took her to lunch. The movers met my husband and son and got her furniture. Then when the coast was clear we took her over there and told her it was her therapy. Then we became task oriented and set up her room while my cousin sat with her. It was the hardest day, but she agreed to stay. We didn't give her a choice really. The doctor said she needed to stay there to be safe. We said goodbye and turned around and left.
She has since been placed on melatonin for sleep and very low dose Zoloft to calm her down. She had exit seeking and a fall in the beginning, but none since. She is adjusting. She now walks with a walker, has PT for walking and balance, had a hair appt, sees a podiatrist and dental hygienist. She participates in all the activities. It is so much more than I could handle, and she is more awake and she is happy and smiling.
She has been there just over 3 months.
It is the hardest thing ever to do besides burying a parent, but it is what has to be done when you reach that point that you can't do it alone anymore.
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Need to start with practical questions that affect your ability to do anything:
Who is your Mom's PoA? Is anyone? Really need to know the answer to this question.
IF your Mom has a PoA, this person needs to read the document to see what is required to activate the authority. Often it is 1 or 2 medical diagnosis of impairment. This may be trickier than it sounds if your Mom is not cooperative. One cannot easily force an uncooperative person to do something they resist, even if you have the legal authority to do so.
You must stop trying to convince her to go to AL. She has dementia, which robs people of their ability to use reason, logic, good judgment, and have empathy for others who are running themselves ragged trying to help them. Literally do not bring it up to her anymore, or any other topic that just results in arguments. Paranoia is an early behavioral feature of dementia (accusing people of stealing).
STOP paying for anything for her. You are robbing yourselves, your spouses and your children.
If there is no PoA for your Mom, here are your options:
- contact social services to tell them she has no PoA and resists help. This may lead to the county acquiring guardianship for her. This is what you want. Been there, done that with a family member. She may qualify for some in-home services but she may shoo them away and eventually it won't be enough. Placement is imminent.
- you go to her house and call 911 telling the EMTs that she is confused and not herself and that she may have a UTI and is resisting a trip to the Urgent Care. This stategy may get her into the ER to indeed check for a UTI (which is treatable). At this point you request to speak to a social worker and explain that your Mom is an unsafe discharge. Do not take her back home even if the hospital promises to help you. They say this to get them out of there. The help never happens.
If your Mom has a PoA, this person will then need to figure out how to pay for the MC (your Mom may be beyond AL at this point). The PoA will need to talk to an elder law attorney or estate planner or a Medicaid Planner for your Mom's home state. FYI Medicaid is individual to each state which have their own rules. Medicaid in most states only pays for LTC, which is medically assessed by a doctor. THen the person has to qualify financially.
Keep coming back here and asking more questions. There is lots to know but lots we can help you with!
my sister and I have PoA. I have a very hard time picturing forcing her to do something she absolutely does not want. But I know something will happen sooner rather than later to force the issue.
About the finances, I don’t want to sound like a martyr. My sister and I have both been fortunate enough that care to this point has been doable with our own kids not having to sacrifice. But paying for assisted living in a scary, different story. My wishing she would go and the worry of paying for it are def a paradox to me.
I sincerely thank you for your well-thought out answer, it is very helpful! Also helpful to me to feel heard. You have done something good for me today.
PS You can choose to continue to wait until she wants to discuss hiring extra home help or moving into a Care Home.
Or change your mind.
Supporting Mom was your Dads duty even when divorced. They were married a number of years and she should have asked for alimony and part of any pension he may have had. Seems she was capable of working and she should have until she was 66 when she would get 100% of her SS. There are low income apts. Help with utilities. You should have never supported her. You enabled her. Now, you are running out of energy.
If Mom winds up in a hospital, tell them she needs to go to a NH upon discharge. Then start the Medicaid process if she has no money. Tell the SW you can no longer care for her. Better if she goes to Rehab. Where I live Rehab is in same building as LTC, easy transition. When she is discharged from Rehab she goes right to LTC. If u do not want her living with you, this decision will need to be made sooner or later. Since your posting here, I would say sooner.
I would consult with an elder attorney in the meantime, you need advice on the best way to proceed from an expert. But she’s likely no longer safe in her environment and it will only get worse.
Please talk to a lawyer asap. Sending love.
I remember this paranoia stage all too well and it was ugly. My mom would call me at work and say that kids were stealing her mail and shining lasers into her bedroom at night or that her neighbors were stealing things from her garage or that a man came into her house, gave her a pill and she woke up in her bed. None of that happened. I was on the brink of a nervous breakdown dealing with the craziness of it all and managing her life on top of it while working full time.
I think you and your sister already know that you're going to have to place your mom and it doesn't sound like she's going to go down easy. Make sure when shopping for the right facility that you find one that has stages....meaning assisted living, memory care, skilled nursing, hospice. It is much easier to move her within one facility than trying to find three different facilities and navigating those moves.
If it were me and I was dealing with your moms temperament, I wouldn't even entertain the idea of trying to bring people into her home for her care. She is not going to let them in and if they do get in, she is going to fight them over everything and then when the caregivers don't want to deal with your mom any more and they start calling in and not showing up, you and your sister are back to doing it. I would skip all of that drama and place her. That won't end all of your problems but it will contain them in one place with people that are used to dealing with people in your moms condition.
This is not going to be easy. I wish you and your sister all the luck and patience in the world!
Take care.
My DH and his sibs are FINALLY placing their mom. They aren't 'asking her' if it's OK with her, they are TELLING her they can no longer sustain her.
Yes, she's going to be furious, but they are holding tight to their choice.
I imagine that the actual day they move her, she will have to be highly sedated and it's going to be a nightmare, but the last year sure hasn't been any picnic.
As with small kids--you don't ASK them--you TELL them.
It sounds like from your description that for safety reasons alone, she already needs most likely 24/7 care either in the home or placement; but, the " level of care needs assessment" will give direction to a difficult situation that many many folks face. Practice self care for yourself including support counseling.....
This started just before Covid, with my husband or I going about 5 days a week, and escalated to me being there 24/7 when she came home from a rehab on hospice and I believed she was dying (5 months ago).
Since then I hired daytime help, then nighttime help, then live in M-F help. And now I visit twice a week on weekdays, and spend a half day, a full night and a full day on the weekend. Sometimes someone else will help for part of the weekend.
The reason I’m sharing all of this is to say that once you get burned out there’s no going back. I am facing medical issues of my own now. You would think I’d be relieved to have a M-F live in. But I’m not. Every time I go over I feel just as burnt as when I was there 24/7. I let it go on too long. And like your mom, it’s not so much the work (shopping, bills, managing meds), it’s the fact that she’s never happy.
You're gotten good advice. Don’t put it off too long. If you’re like me you’ll find care for her and then barely be able to bring yourself to visit. I was supposed to have already left to go over today, but I’m here on the computer. It’s just soul sucking and it’s a lot to recover from.
My journey won’t be over until she passes, because even if I get her into LTC she’s still going to need me to file for Medicaid, sell her house and of course I will get constant calls from the facility, just like when she was in rehab. Please save yourself. You’ve done the best you can and more. As much as we love our mothers, we cannot give up our lives for them.