She told me long before her dementia set in that I was not her choice of caretaker, my sister was. As soon as she started losing her marbles, and I was the one on disability, and therefore the obvious choice for Primary Care partner, she started in on me with the "You aren't the one I want to take care of me," conversations. It has been over four years now. As a person who is already battling depression, I feel about two inches tall at this point. I take my meds religiously, see my doctors monthly, go to church every Sunday. I don't know what else to do. I am hoping that connecting with all of you will help. Thank you.
Although a facility might not be in mom's future, I will say 2 things: 1) they ARE expensive and 2) even if we choose to use a facility, we can STILL care for our LOs in many ways. It takes the hands-on care. You don't handle the finances, but you CAN still visit, take her out on occasion, watch over her care. Just because LOs live elsewhere doesn't mean we abandon them.
Assumption is your sister has POA over your mother. She's handling the finances, so you wouldn't have any idea what mom's financial status is, unless she divulges it (she doesn't have to do and technically shouldn't.) Not knowing the fiscal standing hampers making or planning any changes. Your sister claims there are no funds to pay you (other than room and board.)
You might know these:
Is the residence you live in a home mom owns or a rental?
Is mom's only income SS or is there a pension?
Did mom have any savings prior to needing care?
IF the residence is a rental, then chances are there aren't funds to cover facility care, and possibly not in-home care.
IF the residence is a house, which mom owns, it could be sold to provide funds for a facility. That, however, could leave you without a place to live (IF she qualified for NH and IF she qualified for Medicaid, they do have rules about allowing disabled care-givers to remain in the home - the attorney can confirm that. Lot of IFs.)
IF mom's only income is SS, she might qualify for Medicaid in-home assistance. This could pay YOU for some of the care you provide OR hire outside help to give you a break. They don't cover a lot of hrs, but anything is better than nothing! Dementia isn't usually enough to qualify one for a NH, and Medicaid, in general, doesn't cover AL or MC, only NH. The care money isn't enough for full time care, but if they can pay YOU, you'd have some income.
IF mom has other income, then she likely won't qualify for Medicaid assistance. If she has/had any savings, that might disqualify her as well.
You mentioned an attorney. If sister is willing to provide income/assets in order to apply for Medicaid assistance/pay for you, mom's income/assets should pay for the attorney. If you have no POA and she isn't willing to work with you and/or the attorney, this will likely go nowhere.
So, if possible, talk with the attorney to see if anything can be done. If she's not willing to work with you, but would work with the attorney, perhaps you can at least get some pay for what you do.
If that doesn't work, you only have a few choices.
1) Continue as is, but work on your self esteem and blocking out the negative things your mother says or does.
2) IF you can afford to live on your own, and get a job, then work on getting those plans in place, meanwhile let you sister know that you'll be moving and she'll have to make plans for your mother.
For #1, with a bit more time, once they vaccinate most people and get the virus under control, you might be able to resume some of the previous activities that you enjoyed together. Given more stimulus, and chances to get out might help improve mom's mood a bit.
For #2, be prepared for backlash from your sister. She might not, but she could hurl some nasty words your way. Don't take them to heart. She has gotten off easy so far. Merely paying mtg/taxes or rent and utilities, groceries, etc, her job is EASY.
My job managing everything was MUCH more complex and was time-consuming. I had to juggle payments for the condo, utils AND the facility, work on clearing, cleaning, getting repairs done in order to sell it, all the paperwork & taxes, make appts and take mom, manage her medications and other supplies, still take care of some of MY needs and finances and ensure I visited enough to be sure her care was the best! Didn't matter if I was "tired", if mom needed me or something, I had to take care of it.
It still doesn't compare to 24/7 care for an aging person with dementia.
Even if I could have taken my mother in, it would have hampered getting all the other duties done, esp the condo! She really couldn't do stairs, it was a 3 hour round trip and she would get tired from just going out to lunch! She'd be no help with cleaning or packing. As a matter of fact, it would be a BAD idea to take her there with me, as she didn't want to move in the first place! Nine months after the move to MC, she forgot the condo (she would hound YB about going back during that time.) Her new focus was on either her mother, her previous house or both! Bringing her there several times/week, never mind that it would make the task harder for me, she'd probably refuse to leave!
First understand that your stepping into the role of what the lady needed was a blessing to her. If she is ungrateful, that is a sad statement to her choices.
Do not "own" what she says about you. She is ungrateful and inflexable to allow someone who is not "her" choice. Life is not getting our own way , she is missing out on a relationship with you that could be good.
So please do not hold her rejection. She has a problem and i am so so sorry she has made your days unhappy.
Instead of putting you down years ago, telling you she wanted your sister to look after her, she should have organised care for her eventual old age, don't do this to yourself..
Tell her you agree with her and move on. Ask you sister to help you organise a care facility or service, the pills and doctors wont be enough, she'll die and you'll be left in pieces. Your are worth more, and your primary responsibility is to look after yourself.
Move out, if possible, BUT make sure other arrangements are in place first.
I took her bathroom door off the hinges 3 nights ago so that she could get her walker into her bathroom, as she fell again. Yesterday she told me she was going to call the police on me and tell them I was keeping her prisoner in her bed if I didn’t put her door back on. I told her to go ahead and call, that the door was not going back on. She has trouble dialing any number so I wasn’t very worried. Surprise Surprise. She dialed “0” and the operator called the fire department!!! Here they come 7pm, down the street. Lights and sirens!! When they got thru talking to her, then telling me not to call (I DIDN’T) them any more for our disagreements, they left and she was mad all over again saying “a lot of good that did”.
My mother was the kindest, most loving caring person, until she started going downhill.
This is just the tip of the iceberg. I am here 24/7/365. And have been all this time. Maybe 2 weeks off total time, a day here and there, since I moved in. I do all doctor appts, shopping, cooking. My 1 sister comes in for about 3 hours once a week. She works full time and is busy with her family, grandkids. My other sister comes in once a week, once in a while stays overnight then leaves the next afternoon . Brother lives 1200 miles away. So yes, it is ALL on me. It was my choice all those years ago, after all she did for us kids it was the right choice. At that time! She keeps telling me she wants to live to be100!!!! At that time I will be 75, IF I’m still here. It DOES take a toll on you.
Think long and hard about your choice, if you have one. It WILL be the hardest thing you do. Just consider all things. You literally will have no life of your own.
Do not expect others to help, they won’t.
Expect the worst everyday, and if it is a good day, you win!
Expect to be overwhelmed every day.
I wish you luck and peace of mind in your decision.
Turn to this site for support and a way to blow off steam. They have been a lifesaver!!
And by the way she has told me several times to pack my stuff and get out 😁
Moral of the story is that oftentimes the deciding factor of who will care for their aging LO often does not make sense at all. Prayers sent.
I'll just say - I've been an in-home caregiver for six years now.... the LAST thing I ever envisioned myself doing. and it turns out, I'm pretty good at it, who knew? That's not to say there haven't been evenings I drove home in tears over utter frustration from a day of beat-downs.. I can be very challenging at times! Just stay strong, dig deep to rise above those times of feeling unappreciated. You are a blessing. And also, there is a reason that you are there, doing the hard work. I admire you!
p.s. you'll know when the time is right to change things up, and at that time, just trust that it will all fall into place.
My first comment is to say that your mother's words, whether before or after dementia set in, DO NOT define you. It is difficult sometimes, after many years of listening to it, having it drilled into you that you are less than others expect, to not believe it is true. Just the fact that you've been able to provide her care, mostly unaided, for FOUR years says that isn't who you are. You've taken care of her, despite her negativity. You've provided a safe and caring environment for her. You've managed to do this with NO positive feedback from her and little, if any, from your sister.
THOSE are MAJOR accomplishments!!!
While I didn't physically provide the care for my mother, I was the local non-working (laid off just around when dementia was taking hold, took early SS) sibling, so while I wasn't directed to do what needed to be done, I was the only one who stepped up. I took a lot of crap from both brothers. THEY had big ideas of taking her in when they first heard the cost of MC. That never made it any further. I got very little help from either of them. I couldn't count on them for anything, not even to visit mom. They couldn't visit, but thought about taking her in? HAHAHAHA!
I was angry that they were not contributing much help, or even moral support, but finally worked my way past that. The anger only hurts me, not them. Since then, I'd managed 99.9% of whatever needed to be done myself. Despite one also being POA and all 3 of us trustees, neither asked any questions or offered to do anything (could have been worse, some siblings butt in, accuse, or worse!) Had to manage and prep for sale the condo, medications, appointments, finances, taxes, budgeting, etc. The condo sucked down over 2.5 years of my life. Couple of weeks for one, almost nothing for the other brother.
The saddest part was having mom ask if I'd seen or heard from them. I could only say not recently. The last time OB was in the area, his first visit was with me, and her reaction said a lot! I sent him there before we tackled the condo another day, take her coffee, donuts, visit. When I suggested another visit during afternoon downtime, he refused to go, stating he "didn't know what to do with her." Just BE there! She adored him and was SO happy to see him. What a jerk. I can only hope the lack of visits by them will haunt them, sooner rather than later.
"I will never be able to "fix" her, only make her as happy as she can be, given the circumstances. I only need to do my best one day at a time."
This is important and you've recognized it. You can't make someone else happy, only try to reduce what makes them unhappy. Happiness (and self-acceptance) comes from within ourselves. You ARE doing your best and whether or not mom or your sister recognize it, it is important that YOU continue to believe it!
"She is very tired when she gets home from work. I, apparently, am not."
I'm sure that was written tongue-in-cheek, but if not, I will borrow Countrymouse's word: Rubbish! A full day at work most of the time isn't as tiring as an hour with someone who has dementia! Even if she is tired after a day of work, your day is longer and may not end at all, if mom doesn't have regular sleep patterns. She also has time off from work - many hours/day after work, weekends, holidays, vacations, etc. SAD excuse.
"She does allow me a couple of weeks of vacation a year..."
How generous of her. Does she think her handling of the finances outweighs what you do? She gets paid for her "hard" day at work, you are supposed to accept free room and board. I'm sure HER pay covers more than just room and board. Yes, it could be worse, if she chose not to allow any time off, but still.
More to come, just wanted to help bolster your self-esteem! You are NOT 2" tall, you are 20' tall! Hold your head high, for doing what you do!
Do not try to please a narcissist. They will only destroy you.
I learned that the hard way.
Now, I inform mom that I serve Jesus and am not your slave. If you do not agree with that and I will be gone in an hour ( I travel light ). She shuts up.
Perhaps your church can help with giving you a break from her by visiting with her or offer you a place to stay.
Why not contact Focus on the Family and explain it to them. I am sure they can help you.
You are in my morning prayers.
You didn't say what your sister did for the retirement home. I assume she is not an administrator or nursing assistant/cma/cna or she'd be able to take on some of the decision making that needs to be done.
What does her doctor have to say about the living situation? Along with the other good advice previously given, check with your county or state for a department of aging, they may also be able to assist you with services.
Your father had no business asking for you to promise. Yes respecting your parents is a wonderful thing. Your father could not foresee what would happen in the future. My mom's sister took care of her MIL, but her MIL was a wise woman and told my aunt that when the time came and she became a burden to place her in a facility and not to feel guilty about it. That is the advise I give you. Putting your mother in a facility is NOT abandoning her - it is doing the best thing for her where she can receive the care she needs.
Don't let putting her into a facility destroy you; yes it will be hard and you may grieve, but you should also feel a burden lift. Take that time to do things for yourself, pamper yourself. You aren't abandoning her because you can still visit her and if the visit doesn't go well, tell your mom, well it time for me to go home, I'll see you tomorrow, next week or what time frame you plan to next visit her.
I'm lucky, my parents went to independent living then AL when my father kept falling, (dad was the harder one to care for). He hated to be helped, hated rehab, hated volunteering to give up driving. Living with my father would have driven me to be committed and my mother to be committed living with my husband. I didn't abandon them. I pay their bills. Before dad died and mom was locked down due to covid, I went with them to their dr. appts; we went out to eat, shopping and other things.
Finally, YOU are not 2" tall, you are 10 feet tall and you should take pride(and I don't mean the kind of pride that cometh before a fall) in what you have done - no matter what you mother says. Remember she has dementia and her decision making skill are greatly diminished. Good Luck, and may God bless you with peace and comfort.
She told me her mother was moving with her so she could take care of her. I told her that she needed to set some strong rules for "mom" and have them posted where "mom" can easily see them.
On top of that I told her that when "mom" starts telling her that she doesn't do the care giving right, or that one of her brothers her sisters would be better at the job , then she needed to tell "mom" to call which ever brother or sister she wanted and see how fast they would come to her rescue.
My friend reminds "mom" every morning of the rules as posted. Also she asks her if she needs to call one of her other children to come and get her. So far "mom' has been satisfied.
Obviously most with dementia don't remember what we say or do, but if you can put up posters in multiple places, keep the wording brief and point to it as a reminder, maybe it would work!
You gave your friend some good advice, and so far it has been working!
IF you were not a relative, daughter, it would NOT be LEGAL for you to work 24/7/365 for JUST room and board.
Legally you would need at least 8 hours off per day and you would usually work a 4 or 5 day time period.
This may be screwing up your Social Security benefits for your future. This is 4 years of undocumented work with no added SSI quarters. (I am not sure if it matters since you are on Disability though. But the info is for others that might be in the same position)
The big questions is
Is it good, healthy for you to be caring for your mom? I think you know the answer to that.
For dealing with depression, everyone's circumstance is different but some things that generally work for me are (1) forging meaningful relationships and nurturing those that already exist (2) learning to appreciate the things that are going well, and (3) doing work that I find meaningful, even if you're not being paid to do so.
Take care of yourself
My mother has been very nasty to me whenever I'm at the house. Not that she has said to me she does not want me to be her care giver, but it is obvious how she feels about me. My brother however can do no wrong in her eyes and her choice whenever a decision needs to be made.
When certain concerns arise with my Mother I have found that my brother needs to at least call her and talk to her. Sometimes he gets through to her, sometimes my Mom is made up and that's that. I have found him to be able to calm her with his calls, so when I'm at the house I deal with a lot less verbal abuse.
I'm not sure where your sister lives in relation to you and your Mom. But she is your sister's Mom too, she needs to be involved! If you can, talk to your sister about how your Mom treats you, and that you need her help. If your sister works, she should at least come for a few hours on her days off. If she's not local, then she needs to make regular phone calls to her Mom.
Can another local family member or close family friend come for a few hours week to week to give you a break? You need to take one so you can be stronger when she lashes out at you. Afterwards, remember, she is not herself, she does not mean what she is saying to you. It is easier said then done, I know, I deal with this to. Sometimes I just need a good cry, then move on.
Hope this gives you some help.
she’ll get mad at me and say “your sister would never do/say this or that!”
I always say “well, you shoulda had more kids Mom”.
I don’t like it at all but I do my best.
She brags about me to her friends tho. 😉
Do NOT allow your mom to define who you are!
You are in an unpleasant situation. Many of us have been there or are still there.
If your situation isn’t going to improve, then make the choice to move on. Why torture yourself?
Especially if your mom made it clear to you that you weren’t her first choice!
Let her ask your sister if she wishes to have sissy’s help. What does your sister say about this situation?
Review the facts. If you are confused then I suggest to do this with the help of an objective professional therapist.
Take the ideas that appeal to you from the forum and discuss them with your therapist.
You will most likely see views that you may not have considered before.
Give yourself permission to focus on what is most important for your situation.
What works for others, may not be what is best for you.
Ignore pressure and guilt from any source.
Do WHATEVER it takes to achieve peace for yourself.
Your decisions shouldn’t be defined as ‘right or wrong’ in your situation.
You will simply be choosing what is best suited for your needs.
Transitional times are uncomfortable.
Once you have made final decisions, your mind will be at rest.
Wishing you all the best in this challenging and difficult situation.
Caretaking takes great skill and compassion. You can take pride in your ability and willingness to take this job on.
You have value. You do not deserve to be a punching bag.
Ugly words from loved ones have a way of sticking on us. Please remember (and post it on note cards around the home) "I am a beloved child of the One True King. I am chosen. I am accepted. I am empowered through His strength. Let His mercy and loving kindness flow from me to those around me."