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.
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.)
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.
I did a 3 way call with my mom and social security administration and got her set up. I called by myself prior and got the list of items that needed submitting for her to collect against my dad's SS. If memory serves I needed both their social security numbers, both their birth dates, the filed divorce decree and the marriage certificate. The divorce decree and marriage license was ordered thru vital records in the state capital where they took place, small fee involved and the rest from them.
Because my mom remarried and she was widowed I needed her 2nd husband's information to verify he was dead.
It was a bit time consuming but, I needed to know that she was getting enough monthly income to live and it was more then worth the time to have her collecting benefits she was entitled to under the law. I refused to give her any support because of her choices but, I needed to do what I could to ensure she could pay her bills and eat.
Now a shout out to tacy0122, an old poster that gave me this information, because I thought my mom was not eligible for my dad's benefit because of remarriage.
I would recommend that you look into facilities based on medicaid before you do this because my mom made to much money getting my dad's SS to qualify for medicaid. Thank God that she never needed a facility or it would have been challenging. Since your mom is in need of a facility, please check the requirements for medicaid to avoid my potential situation.
Options:
1) Get her to the ER and don’t take her out as described by Geaton777.
2) Call APS.
3) Call your local County Area of Aging .
They will send a social worker to the house to do a needs assessment .
You should tell anyone helping you that you can not pay for her care, not can you take care of her or live with her .
My advice is for you and your sister to go to a lawyer and officially give up POA first, so when Mom is either in the hospital or APS or Agency of Aging get involved they will have the government appoint a guardian . This will make it their problem to find mom a place to live.
You can not pay for Mom to be in memory care . You have done more than enough already .
Furthermore , Medicaid in most states will only pay for SNF ( skilled nursing facility , which Mom would have to qualify for medically ). If she only needs Assisted living or memory care Medicaid may not pay depending on your state Medicaid program . This is how families get stuck taking care of elderly people who don’t have money .
Again , give up POA , then get the ball rolling to get her placed . And get back to taking care of yourself.
Good Luck .
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.
Take a day off.
Take time to think about it.
Ask your Sister to think about it too.
Have coffee or a meal with your Sister & discuss.
What will *too much* look like?
This is hard decision & there are no right answers. Each individual & family have their own capabilities & limitations. Own blend of personalities too.
Be honest. Really LOOK at the picture. I'll add some medico lingo..
This *Care Plan* for your Mother, ideally needs to work for ALL of you in the plan.
It's not a nice word, but *Burden* is what it becomes when the needs get too much.
*Caregiver Burden* leads to *Caregiver Burnout*
Finding out WHERE you are is #1.
Sailing along OK?
Or starting to sink?
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.....
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.
Everyone needs respite, even your mom.
Maybe bring in caregivers while you are there so she could get used to them. That would be good because you know how she “likes things” and it won’t leave things for the imagination of the care givers. Gradually back out of the picture as much as possible. At the very least it will might make the segue in her care easier.
When she does first transition visit often, even if it’s only a popcorn visit. Keep in contact via phone, while she’s able to appreciate it. There are so many innovative new technologies to keep connected.
Outside time is so important whenever possible!!!! Distraction things she likes to do. Whatever it takes, knitting, crochet, cards. Reassuring pats, little hugs, cute little presents for no reason. I’m sure you do this, juts a reminder for others that might be reading this.
You, wonderful family, are to be applauded for your care and generosity. So many seniors are not so lucky.
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.
Dememtia people are generally scared of strangers or new places. Talking about moving out to a newer place will not be a good topic for them. In my case, I sacrificed myself to keep my mom home as I know she will not make it in the nursing homes. I utilized all the resources the state has. She qualified for low income healthcare. She got 50hrs/wk (yes, per week, not per month) of in-home services. This helped me tremendously to release the stress I need.
Also, I was lucky enough to obtain her a housing subsidized apartment unit next to me. I have all the cameras to watch her inside her apartment unit from my unit when her aides are not around with her started from when she was still much stronger walking around the house until she become chair-bound. Dementia people talk a lot of nonsense, and it can elevate your stress level for the caregivers. That's why I utilized more than one aides on these total large number of hours of help. Learn to put up or ignore this stress from your mom. The fact I don't have to be in her apartment and still be able to care for and watch her, it's a great setup. I used technology to help me out with all of these. Camera alert, door bell/alarm alert, room temperature alert, movement alert, even light on/off all were WiFied in to my phone. I controlled everything in her apartment with my phone. Like I said that love will forces you to figure out things to keep your parents home with the least amount of stress on you.
It's not easy, but hang in there. I'll talk with you later...
You have to do what you need to do - for you - and her.
Make the arrangements that are necessary.
Tell her she is going for a ride or out to lunch.
The goal is to keep her calm.
However, dementia is brain chemistry / cognitive changes and you need to 'work with' / relate to a person where they are NOW. It is difficult to realize that they are not the person they used to be - communication is different. Dementia is an entirely new language.
You do what you need to do.
Otherwise, you continue to exhaust yourself into total burnout.
Do not do this to yourself. Taking care of you - and her - is a very loving action and decision. Keep her comfortable and calm.
Gena / Touch Matters
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.
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.
There are options for in home care that even include family as caregivers. This is usually a good option for those struggling to care for someone, but could use some additional financial help in doing so. We have a program here called IRIS that is wonderful. There should be familiar options in all states. Not all include family as caregivers. I think they should, but you can check around to see what your state offers.
You never know what will happen at any given moment. And changes/declines can happen literally over night.
Forgetting to turn the water off, forgetting the stove. Forgetting you put papers in the oven to "keep them safe" then turning the oven on. Turning the furnace off...or on. Going out to get the mail and getting lost. Inviting the "representative from the gas company" in to "look at the meter".
The fact that you are caring for her DAILY is putting undue burden on you and your family.
At this point there are 3 "logical" options.
1. SHE pays for caregivers that will care for her. This takes some burden off your shoulders..
2. She moves into Memory Care so that she has the level of care that she needs when she needs it.
3. (and this is the kicker) She moves in with you and your family...or you and your family move in with her. this is probably the least desirable option.
Is anyone POA? With the diagnosis of dementia the POA is the one that makes the decision. I am sure the doctor would confirm that she should not be living alone.
Dementia patients don't have the mental capacity to know when they are unsafe.
I totally understand the burden that your and your sister are under, and I also can tell you that your mother - like mine - has no understanding or regard for that burden. If she did, she would (hopefully) agree to cooperate with moving to a safe environment.
With my mother, I waited until the last possible minute when we had a crisis of sorts, as I guess most people do when they have uncooperative parents.
My best suggestion is to have a plan in place and then just go for it. Expect resistance and complaints. Go ahead and give yourself permission to cross the line from daughter into dictator. It will help emotionally to stop being afraid of her anger when she doesn't understand that you are only doing her good.
I'm sending a hug and hope you'll reach out to get the support you need!
When she is no longer safe to be alone or stay healthy, then you and your sister will have to face the inevitable - other care arrangements. I would suggest bringing other people into your caregiving circle now since you need more help if either you or sister is ill, injured or needs a hospital stay. You and your sister also need time off to care for yourselves, maintain your other relationships, and even have time off for fun! You and sister can also research all the resources available in your area that your mom may qualify for. Make sure to start looking at long term care facilities that your mom's finances qualify her for. Be aware there can be a waiting period to get her into a place when the time comes.