I have thought about posting on this message board for quite a few years now. I am finally about to snap and am desperate for advice. So, here I am. I apologize in advance for the length of this story.
I am a 53 yo female and have a wonderful husband and a grown son. I have worked full time my entire life, and am now changing careers, which will require training and classes. My husband and I are working hard to pay off our house and not yet prepared for retirement. I have to continue working.
I am struggling with caring for my 86 year old mother. She currently lives in a senior community 10 minutes from us in an apartment. My relationship with her is very complicated. She is the type of person that everyone loves. She puts on a show for them and complements them and they love it. She has always been very controlling with me and, as more of a passive person myself, it has been challenging throughout my life to be strong and stand up to her. I do pretty well, but I’m still very affected by her guilt trips. She has always done well for others, putting on a positive attitude, entertaining and seemed carefree. But, when she was alone with me, she showed her true self - cynical, controlling, OCD, and afraid. Constantly discussing her life full of trauma. Bringing up negative things that happened to her (and me) all of the time. She is a grandiose type of narcissist that believes that the universe revolves around her. This has all worsened as she has aged to the point where I cannot tolerate being with her for more than a few hours at a time without feeling like I will lose my mind. I think I still love her, but mostly I just feel this sense of obligation and resentment (which makes me feel terribly guilty). It’s worth mentioning that she’s quite fond of saying that I ‘belong to her’, not to my husband. She actually said to me last year, “your husband may think that you're his, but you’re mine first - and he just gets what’s left”. Yes, she actually said that. I don’t want to present her as all bad, she has a lot of good in her as well, but these things are important to mention to get the full picture of the situation.
Over the past twenty years, my mother has had a car accident and many falls, some which involved head trauma. All of this has left her with horrible balance problems which have worsened over time. She doesn’t have any other major health issues and only takes medicine for high blood pressure.
In 2016 she had a major fall in the carport of her house which required months of rehabilitation. She lived with my husband and I for many weeks while she recuperated before returning to her home.
In 2019, she was running out of money (she stopped working in her 30’s, my father was the primary earner and he passed away 21 years ago - It’s also worth mentioning that my father (who was kindest, sweetest person I’ve ever known), while he was alive, loved her and spoiled her rotten, cooked all her meals and brought them to her on a tray in the living room). She and I decided to sell her home and move her closer to us in a Senior Living Community where I could help her more. She placed the money in a Trust of which I am the Trustee. I have her financial and healthcare POA. We moved her into the apartment and she adjusted nicely and lived there for two years.
This went very well until she had another fall in her bathroom in 2021 and hit her head again. She was to the point that she couldn’t stand by herself or get to the bathroom and she constantly felt like she was falling, even when in the bed. She wanted me to be a full time caregiver then. I told her I could help her some, but that I would need help too because I had to work full time and had a husband. I was able to find a nice assisted living community and she agreed to move in there.
(I ran out of room.....see the reply below for the rest)
Though it was a struggle at first, she really blossomed there, and eventually became almost totally independent again. Now, again, she was used to having all her meals prepared and served to her.
This is when I really screwed up I think. I was so worried about spending her money. That the cost of the assisted living would take everything she had within 3 years. It terrified me that, if she lived another 10-15 years, that she would be completely broke and I would have been the one making these decisions… and then what? I couldn’t sleep, the anxiety and worry basically ruining my life (and that of my husband). I was thinking at that time that she was doing so well that maybe I put her in assisted living too soon and she could live independently again. So, in March of this year, I moved her out of assisted living. Back to an independent apartment 10 minutes from us. We moved her back in and all seemed to go well at first. But, of course, that was only temporary.
Over the last couple of months she’s been saying she was getting weaker. But, it was very sporadic, one day she was fine, the next she was struggling. I called her physician and they started doing some physical therapy which helped her so much. She was walking laps around her courtyard outside with the therapist. She was doing exercises. This was only one month ago. My husband and I haven't traveled in 3 years, so we had cautiously set up a couple of small trips for October and November. A few weeks ago I told her that we were going out of town in October. The next day, her blood pressure spiked up uncontrollably and she went to the ER. After I brought her home, the next morning she fell in the kitchen and said she laid there for 5 hours screaming for help. Note: she wears an emergency call button but didn’t push it until 5 hours later. She didn’t hit her head and didn’t go to the hospital but she suddenly was so weak she couldn’t stand by herself, was terrified to walk, go to the bathroom and most of all, she didn’t want to be left alone….ever again. I panicked because our trip was the next week, so I called in some caregivers to help out and be with her while we were gone. $20/hour. 24 hours a day. We came back into town this Monday and she hasn’t improved and now insists she can no longer be alone and wants 24/7 caregivers from now on. I have explained to her that this is not financially possible. I did the quick math for her and she started to cry. I discussed the possibility of assisted living again and she flat out refused, saying she would be alone there too. Her caregivers all have their own opinions about what is causing her problems…one says UTI….one says early Parkinson’s…..one says early dementia. All of them agree to wait for a diagnosis before considering permanent placement somewhere. But, the cost of 24/7 caregivers is prohibitive and even a few months of this will deplete what money she has left. I was trying to be there 6-7 hours a day to help but now my husband and son are sick and I’m not sure if I’m going to get what they have. I can’t take that over to her and get her sick. So, I’m here at home, miserable and worrying, trying to deal with all of her doctor visits, referrals, appointments, the trust, the bills. Watching her savings drain away.
Meanwhile, my own household is falling apart. My work is falling behind, I’m losing track of my household responsibilities. And we have our trip scheduled in two weeks. Do I cancel it? My poor husband has been so sweet, but he has seen this coming for years. And, as kind and supportive as he is, he is miserable right along with me. We are in our 50’s. I’m afraid it will destroy my marriage. And the stress and worry is just debilitating. I know it’s important to be a good daughter, but isn’t it also important to be a good wife?
So, I’m asking you guys out there in the community. What should I do??? Help.
Getting speculative diagnoses about your Mother's health problems from caregivers isn't helping you to make practical decisions, so you need to take her to Urgent Care or the ER to make sure she doesn't have a UTI. This is an easy test and is treatable. If her balance issues persist, this is an appointment with her primary doc, a neurologist or an ENT. When she sees her primary doc, discretely ask for a cognitive and memory exam (if she doesn't have a UTI) so that you get the full picture of her capacity.
Then I would talk to either or both an elder law or estate planning attorney or Medicaid Planner for her state to get the lay of the financial land. You should not even be tempted to pay for her care, since this is unsustainable and unfair.
In most states, Medicaid pays for LTC, but this is a medical assessment made by a doctor and is the second piece of qualifying for Medicaid. This is a conversation you can have with her doctor: if your Mom can't stay upright ever she may meet the criteria for needing LTC but I'm not sure.
Do not cancel your vacation. Bless you for doing yeoman's work on your Mom's behalf to this point. An option you always have is to resign your PoA and allow the county to become her guardian and then they will take over placing her, managing her affairs and covering the costs. Your Mom won't like any of this, but just a reminder that your marriage is at stake and is the priority. Preserve it at all costs.
Her doctor's office is sending a nurse out weekly for the last couple of weeks and she'll be there today. I talked to her last night about a possible UTI so she's going to get a urine sample today and find out. After we rule that out I'm going to send a message to her doctor requesting whatever testing you guys on the board suggest as well as documenting all her symptoms and possibly asking for some depression/anti-anxiety meds for her (maybe some for me too, lol).
I mentioned this in another reply but yes, she does have an elder care attorney. The trust was set up so that she will be eligible for Medicaid - the 5 year mark is November 2024. However, she is eligible for VA Aid and Attendance if she physically qualifies. But, the maximum is only $1400/month so it won't help too much. I spoke with their office yesterday and they suggested I work with their social worker for an extra charge of $3500 per year.....she's been paying them $750 a year to have them on retainer anyway.
Yes, paying for her care is not even remotely possible for us.
Thank you for the message about my marriage. It's good to know that I can resign my POA if I get desperate. Hopefully, it won't come to that, I still want to help her. I wish I had never heard of a trust though, it has been a nightmare.
You are in crisis mode right now. Don't make any rash decisions. DO NOT move her into your home.
Do you have an elder law attorney? When the trust was set up, was the idea that she be eligible for Medicaid,? Will Medicaid pay for AL in your state?
Yes, she needs a complete physical workup and neuropsych testing. Do not accept "she's cognitively fine" from a PCP based on knowing where she is and who the president is.
She also needs a professional "needs assessment" from someone skilled in those assessments. Often, the Area Agency on Aging can get you one.
There is often a conflict between what an elder (especially a narcissist one) wants and what they need.
Please remember that your life, needs and family matter. Her wishes do not trump your happiness.
Yes, she does have an elder care attorney. The trust was set up so that she will be eligible for Medicaid - the 5 year mark is November 2024. However, she is eligible for VA Aid and Attendance if she physically qualifies. But, the maximum is only $1400/month so it won't help too much. I spoke with their office yesterday and they suggested I work with their social worker for an extra charge of $3500 per year.....she's been paying them $750 a year to have them on retainer anyway.
Thank you for the suggestion of the complete physical workup and neuropsych testing, I will talk to her doctor.
I googled Area Agency on Aging in Georgia and we do have one. I'm not really sure how that works?
Once Mom is evaluated by PT, you can go from there. She may need an MRI to see if Dementia has set in. You already know that Mom will never live with you. Spend what she has on an AL. When the money runs out then its Long-term care with Medicaid paying for it. That's how it has to be because you should never again move Mom into your home, it will be harder to get rid of her. Your DH is your priority. Your future is ur priority.
Her physical therapist is coming out this afternoon to evaluate her again so that should help. I've been talking with them a lot over the past few weeks about all of her radical changes and they seem as perplexed as I am.
I have two options with assisted living:
1) I can choose the one that she lived in recently. Which was not perfect (none of them are) but she did well there and one of her current caregivers works there....they love each other so that's a plus. That caregiver was telling me yesterday that mom wouldn't be able to live in an AL right now because of her condition, she needs more care. But, she is super sweet and is under my mother's influence, and she knows my mom wants to stay where she is so I'm afraid that could affect her recommendations. Also, that AL does not accept Medicaid assignment so she would have to leave eventually if it comes to that.
2) Choose an assisted living that will also accept Medicaid assignment but is completely unfamiliar.
Either way, my mom will fight both.
I have read answers below and they are kind and well thought out.
I see that you are bright and knowledgable and have all the help anyone could suggest to you from attorney on.
I also see that you have a good read on WHO YOUR MOTHER IS, and who she ALWAYS WAS.
I suggest you listen daily to a podcast called Dr. Laura's Call of the Day along with reading here as you say you have been. Dr Laura Schlessinger may or may not be familiar to you, but to me she has a marvelous way of telling it like it is.
With someone as bright and well spoken as you are I think she would say "You're very bright it's clear you understand who and what your mother is. You know that she raised and shaped you to serve her. That she has limitations that won't ever change. And it is clear you understand what you stand to lose if you choose to continue as you are.
So it is time to understand you are not a child now, but a grown up with responsiblity for yourself and to those who love you."
It makes no difference what you say to your Mom about your choices, so WHEN you make them, keep explanations short and sweet. She is in care. She will remain in care. You will assist while you are able given the needs of your own life. At some point you may need to turn over management of her care and assistance to a LICENSED FIDUCIARY or elder law attorney. How long her care continues nicely depends on her own assets, NEVER ON YOURS.
You have a good life. You can thrown it on your mother's funeral pyre, or not.
You have an OBLIGATION to that decent man you marriage. Why does this mention HIM so little? And your mother so much? You need to think about that because you no obligation to your mother. NO OBLIGATION. She had one to you and she failed it. Due to her limitations, she failed. And that won't change. But you DO have an obligation to your husband.
How about THAT?
Again, you have written a lot about your mother and her life. And in all honesty I couldn't care less about your mother.
I CARE ABOUT YOU.
So does your husband.
Ultimately, this is ALL UP TO YOU. For myself, my own life, and my life partner's life are worth more than considering a woman who has lived a selfish self-serving life. She was likely a victim of her own parents or of her genetic history; that's sad. I can forgive it but I wouldn't foster it.
But I can't convince you of this. Nor can 1,000 shrinks on a platter.
So I leave it to you to put on Anubis's scales. Husband/Mother. Mother/Husband. Throwing thoughts of your OWN life on the scales may help tip them, because your Mom may have another decade left.
It's up to you.
It is harsh, but it's what I needed to hear. You are accurate in your description of her and her grooming me to care for her. And, even more correct about my dear husband. He needs to come first.
I will make the needed changes ASAP.
Now I just need a course of action. I think step one will be a straightforward conversation with my mother. Here's what will happen. You can do it with my help or without.
Then, I will contact a senior advocate I worked with before and find the right place.
Does that sound logical? Is there something else I should do first?
What's wrong with this story? Everything. As soon as you told mother you were going out of town, all hell broke loose. Literally. Who lays on the floor for 5 hours screaming for help who's wearing an emergency call button? A manipulative 86 yo woman who's building a case for herself as to why she's "too weak and unbalanced to ever be left alone again."
Unfortunately, mother does not have the means to pay for 24/7 care. I have a feeling the tests will show nothing conclusive that's wrong with her because MRIs don't show spoiled, manipulative tactics used by women who are used to getting exactly what they want, when they want, and how they want it. Like dinners cooked for them and served on trays while they relax. I could be wrong, and the testing will prove what IS wrong with her then.
I'd tell her in plain English that her only option now is Skilled Nursing with Medicaid and a roommate to share the bathroom with. She will spend down her money first and then Medicaid will kick in. AL will not accept residents in her "weakened" state, it's nursing homes only now. She's forfeited her choices now, after this last "dangerous" fall she took, so sorry ma, my hands are tied. She may just make a "miraculous recovery" from all that ails her and decide she's well enough to go back to AL after all! That's ASSISTED living, not Independent living.
My mother fell 95x during her 4 yrs in AL and almost 3 in MC. She never demanded 24/7 one on one care, even when she became wheelchair bound. She had bad neuropathy in her legs and feet, and VERY bad vertigo as a result of not knowing where she was in space (from numb feet). And STILL she managed in Assisted Living. I too worried about her money running out to private pay and her having to go into a Medicaid SNF with a roommate. I lost a lot of sleep over that. But she mercifully passed at 95 about 6 months before her funds ran out. Advanced dementia and CHF stripped away her quality of life so I was relieved God took her.
She too was horribly manipulative and put on a big show for others, while reserving her vitriol and angst for me. I always had to stay one step ahead of her antics and keep my contact with her down to a minimum, as a result. She'd have sucked me dry as a bone had I allowed her to. Energy vampires I call these types of women.
Wishing you the best of luck with a difficult situation.
Don’t spend money on her.
Don’t tell her any details or plans you have for yourselves. Like you said, she will sabotage them.
My mom is similar in that everyone talks about how nice she is. She saves all her anger and complaining for family.
She is expecting you to replace your dad. All the things he did for her, she thinks you will do. Hence her saying she comes first. Remind her that NO, she does not, and she can fuss about it all she wants.
Taking her out of assisted living was a huge mistake. It’s time for her to go back.
So what can you do? Try to narrow it down. What is your first priority? Mom seems to think it's her or should be. You're swamped with that. What can you do to simplify her mess? Put all her bills on autopay if you haven't. Spend less time with her. Look for volunteers who will drop in and chat. My parents had one that came over and played guitar - I think she was sent by hospice. Could you cut down or postpone some doctor visits? Could you do some of them through telehealth via computer or cell phone so there wouldn't be a visit at all? Has she had a hospice evaluation? If she qualifies, they'd provide some services. Are you grocery shopping for her? Order online weekly from Walmart, and they deliver. Saves lots of time.
I agree that she needs to be back in AL. That would solve a lot of problems.
Your husband comes first. You already know that. Good luck.
I wouldn't discount getting a needs assessment. The PT can do her/his part, but you also need to know about mom's ability to do ADLs (activities of daily living) and her ability to keep herself safe.
5 hours on the floor with a call button doesn't sound manipulative, it sounds like dementia.
Call the local AAA and ask about both case management and needs assessments.
Remember, your marriage and family come first!
Your mother is, indeed, a narcissist and NOTHING you do or say to her will change who she is. I’m surprised that you do not have to seek counseling or be on antidepressants as narcissists are known to cause their loved ones these problems.
DO NOT let your mother put you on a guilt trip, and DO NOT cancel your vacation because of your mother. As with all narcissists, they cannot show empathy or compassion, and they love to blame others for their screw-ups. You are one of the very few people to have a happy and supportive husband, and you should not let your mother ruin your marriage.
The only way you can survive your mother’s narcissistic tendencies is to keep a distance from her. Having her move into an assisted-living facility is the best way of keeping your distance from her. If your mother runs out of money she can go on Medicaid at that point. If your mother has to move into a Medicaid SNF, make sure that you keep ALL records of how your mother’s money was spent as Medicaid will request a 5-year look back (in some states) on those records of how her money was spent. If your mother qualifies for Medicaid, they will also request to see her trust along with the 5-year look back on her income and resources.
You have a tough road ahead with your narcissistic mother, but DO NOT let her ruin your marriage or your life. Remember that you, your husband, and your child are top priority over your mother.
Best wishes.
From grandiose, entitled, outgoing, educated, loved by all to narcissistic and hypochondriac.
20 years ago I got divorced, I was in my 30s, my mother expected me to move back with her, she was in her 50s, nothing wrong with her medically, she wanted somebody to take care of her, being her slave more likely.
I said no!
I created my own life full of joy. I took that independence, self assurance and some good characteristics which we learned or are born with, then added some of mother’s selfishness to focus on myself, my education, relationships.
You do not belong to anybody.
I feel for you . I had a narc Mom too . I know what you are dealing with .
The others here have already given you excellent answers and resources if Mom refuses .
Personally I used my County Agency of Aging to help get my mother out of her home. My mother had refused cognitive testing or to go to assisted living and I was at my wits end . The Agency of Aging sent a social worker out to interview my mother. The social worker said my mother could not “ come up with a plan” , if given a hypothetical situation . She deemed my mother needed 24/7 supervision and not safe to live alone in her home. That is how I got her placed in assisted living . Mom ultimately went for cognitive testing . She wanted to test out to get back home . She was diagnosed with dementia and stayed in her facility .
Take your life back .
Good Luck .
very disturbing.
I spoke to my mom today about moving into assisted living and, to my shock, she actually agreed to go along with what I recommend. That is groundbreaking information and the first bit of relief I've had in a while. I emailed a senior advocate for facility recommendations. I set up a tour for next week in an assisted living that we have looked into before. I need one that will accept medicaid if she outlives her money.
We got the test results back from the doctor and she does not have a UTI.
Now I'm just faced with having to pay the caregivers while I get all of this set up which I'm thinking will take at least a month or more. $20/hour x 24 hours is $480/day which is excessive!! I'm going to be taking some shifts as well. My question is now this - I have heard that a live in caregiver makes about $200 - $300 day. This would be less expensive, though I do like the people that she has now. They are reliable and the one that comes at night knows her very well. Does anyone have any experience with how much to pay caregivers and hourly vs. daily (we are in Georgia)??
Yesterday I was able to set up a tour of an assisted living for this upcoming Thursday. I am already familiar with this facility, which is a plus.
Early this morning, about 4:30am, I received a call from the overnight caregiver saying that mom woke up and at first she couldn't speak, slurring her words, and could barely get up at all. She regained a little of her speech and thought she had a mini-stroke (she has thought this many times in the past). The poor night caregiver was panicked. My mom did not want to go to the hospital and ended up going back to sleep. I went over there later in the day and she had regained her ability to speak. She is asking a lot of questions about the assisted living. She wants a ground floor apartment (she's afraid of a fire in the building), wants to make sure the food is good), wants to know how long it's been around.
We'll see how this week goes but something tells me this is not going to be easy.
Hello everyone. Please forgive me for not giving an update on the situation sooner. After my last update. my mother lost her speech again and ended up in the hospital where they did diagnose her with having a stroke. She went into rehabilitation and then we moved her into assisted living last week. The last few weeks have been very stressful during the move but now, hopefully, everything will settle down somewhat. She's giving the staff I bit of a hard time, but hopefully she will adjust.
I just want to thank everyone here on the message board who answered my plea for help back in October. Your advice gave me the strength to make the decisions I needed to make and I'm forever grateful.