I've been lurking mostly here since my dad passed away at the end of September after a 20-year roller coaster illness. I am now the sole caregiver for my mom who has more health issues than I can possibly type here.
My mom is very resistant to everything I suggest: moving her close to me (I live 1,000 miles away but have been here with them since MAY!) but to an assisted living community where people can care for her daily; getting in-home care in the short-term; talking to someone about her grief, her wanting to die, her pain.
All of it falls on deaf ears, and she just wails all day long about everything. She had a stroke in 2002, and it really changed her personality. She became timid, fearful, and her emotions know two speeds: 0 or 200mph. Everything is met with the same level of hysteria: she has the same reaction to telemarketers calling that she does when we talk about missing my dad.
All the advice here points to me continuing down the road I'm on: selling the house, getting her finances in order to be able to pay for the assisted living, and finding her a place to live near me. But on a daily basis, she tells me she doesn't want to go, that I'm "dumping her in a nursing home," that she wants to die before any of that could happen.
I have tried to explain that there are people trained and skilled in taking care of her in ways I am not. She fell out of bed recently, and we had to call 911 to have EMS help me pick her up. I bathe her; I change dressings on pressure sores from her staying in bed too long; I get her in and out of bed with the ring of my phone every single night, multiple times.
She is afraid to have someone else do those things because they'll laugh at her. She is very heavy, and her body has been through a lot. She constantly says things about them taking photos of her and posting them online. The self-hatred she feels makes her believe no one could like her, no one could look at her without that hatred she herself sees.
At the same time, she said she knows she has "ruined my life." But every time we talk about how we could work to make it better, for both of us, she says the answer is her dying, where she can be with my dad.
While she's always been a pessimist, especially as it relates to herself, she truly has taken it to a new low. Every single thing is a doomsday scenario, the worst possible outcome. She watches a lot of TV, so she envisions elder abuse, people stealing her money, me running away with her money.... if it's been on a soap opera or Law & Order, she is pretty sure it's going to happen to her.
I'm an only child, and I have literally dropped everything countless times to come help them during both of their illnesses. I moved back in when we thought my dad was very near to a liver transplant in 2015 (he got too sick to have one, so I went home after a year). I have tried to give back to them everything they've given me as parents, because they did sacrifice to give me the best upbringing they could. I do believe I owe it to them to help, and I love them. I care what happens to my mom, and I do not want her living somewhere where people don't help her or make her feel badly about the body that is failing her. She is a good person who is blinded by her physical and mental pain. I know I cannot fix her, but I also cannot get her to try to fix herself.
I am seeing a therapist here to try to work through my grief, my depression at leaving my own life (I haven't seen my boyfriend who I live with since May), my stress trying to work remotely while being my mom's caretaker... but we're not making much progress. I don't have time to grieve or process my own emotions because I'm trying to deal with my mom's emotions.
I know many of you are in this situation, or have been. Any suggestions are welcome. I think I just needed to get it all out here. Thanks for listening.
My mom is severely agoraphobic and is so scared of people not liking her that she never leaves the house (in addition to her mobility and chronic pain that makes it physically difficult). AND she also doesn't believe she's "an old person" who could live in an AL.
She'll be the young kid on the block at 63, for sure, but heck, she could use that to her advantage if she wanted to have friends. She seems to think the only people there will play bridge and talk about living through the Great Depression.
It is definitely tough for all of us. It makes me sad that we all do go through this to some degree, just some worse than others.
Unfortunately, you don't have anyone to do that for you, so I hope you will recognize that many hard, but necessary, decisions in this situation cause you to feel this way. This may sound silly, but maybe you could talk to your "bad guy" side and give that side the job of being tough. Your "good guy" side gets to do all the loving things you are already so good at doing. Then forget about it. Do what is necessary.
This is just a cognitive trick, but it might help.
Then go home. Call and check in as you have always done and allow your Mother to choose her quality of life. Once she chooses it will be easier for you and she to discuss her choice and how, if necessary you can provide support her choices- except for the choice of her giving up on life. Be honest, tell her you do not want to lose both parents, however set boundaries according to how you can realistically support her. I am an only child with a widowed Mother, so I can testify that each and every answer that advises you not to become a codependent caregiver is on point. Seek support for yourself as well as your Mom, no matter what decision concerning her health and care she makes. God Bless and good luck.
He was her caregiver, though, in so many ways and had been for years, even during his own illness. So she came to rely on him, or me, or a combination of both even when I wasn't living here.
Leaving her on her own is not an option. She would not make it a day without someone here to help (me or a caregiver). So until we can make some headway with bringing someone into the house that she feels comfortable with, I wouldn't do that to her. I know she knows that, and maybe she is taking advantage of it. But I don't think I could live with myself just walking out on her. If it was a question of her just not wanting to take care of herself, that would be one thing. But because she cannot handle basic functions on her own (bathing, getting in/out of bed, cooking, etc), I think that is setting her up for failure (which could lead to her trying to take her life while no one was here).
I want her to succeed, so that's what I continue to work on. Some days are good, some not so much.
Thank you for your suggestions and the support of someone who knows what this is like as an only child.
I’ve been in your situation for many years and I’m lucky to have a sister in town with me and my parents. My dear husband is my strength and a shoulder to cry on of which I’ve done many times. Is there an irrevocable trust in place naming you as her POA, a medical directive, is the house in the trust? If not, get it done yesterday with an attorney.
It sounds like your mom May be suffering from anxiety of what she thinks will happen when none of it has. I would sit down with her at an attorneys office if you can so he can go over any trust or wills and can explain to both of you how everything is to protect the assets. I would explain to her that you are worn out mentally, physically and emotionally and that you can’t and won’t put your own well being thru this stress any longer. You love her however you love yourself also so these are your choices. Sell the house and move her closer to you would be my suggestion. If she’s in a facility and you’re the only person with the POA you’ll be the first they call to meet her at the hospital should something happen. You won’t be able to keep an eye on her, the caregiver or the facility being so far away. My sister and I have raked the facility over the coals in meetings with the head people including corporate. Things are now much better but that’s because we are there almost everyday. Something I remember is when my mom was in the hospital, a nurse saw me in the hallway outside of her door crying. She told me that she sees me and my sister there for my mom several times a day. She can see we’re tired, drained and emotionally broken. My mom was in good hands and would be well taken care of but we didn’t need to come to the hospital everyday. I needed to take care of myself or I wouldn’t be able to take care of anyone else. Make yourself a priority. What she said was very true and I did what she told me to do. At first I felt a bit of guilt but overall I felt a bit healthier and less resentful. I don’t know what your moms mental state is but she may be using a bit of manipulation to get you to stay or move in with her. If you do you will never get out or away, don’t do it!
I do have Durable & medical POA, and I am on all of her accounts.
You're absolutely right that she fears the things that haven't happened, just things that technically *could* happen. I have told her that a trust to protect her assets is a benefit to her, but she thinks of it as a trust fund where a kid asks their rich parent to write them a check.
I've talked to a financial advisor a few times just to get things started, so the plan is that he'll meet with us in January after we get her SS filed (we've been waiting for months for the appointment).
I used to go see my dad every day, both in the hospital and at the LTACH, and I'd stay 12+ hours. I'd wait to see who the night nurse was, make sure they knew my dad's quirks, things he needed, etc.
I had a few good ones who said something similar to what the nurses told you and your sister: go home, get some rest, let us take care of him.
But on the flip side, I also had nurses calling me at 3:00 am because they didn't know what to do, and my dad said "call my daughter, she knows everything!" They'd have questions about his meds that weren't properly documented, or if he was in a medicine fog, he'd get confused about his conditions. And sadly, that happened a lot! Then there were the nurses who were very nice people and I'm sure good at their jobs, but there was a language barrier and they never quite understood what we were saying.
So I think my mom fears all of that, too. Knowing that she is in the hands of people who will rotate, that she'll have to get to know over and over... people who will write the wrong thing down and it'll somehow follow her around that she has some condition that she doesn't really have. Past experience really colors your expectations of the future.
And yes, I do think there is some manipulation going on. Not maliciously, but just out of fear. How we're living right now is miserable, but it is something she knows. So I think she'd prefer that to the unknown (even though the unknown could be a ton better!!).
Thank you for sharing your experiences. Definitely all good suggestions and ideas.
I do have Durable POA and medical POA, so that is a start if we need to go down that road.
Thank you for sharing your experience, and I'm so glad that both you and your mom are happier!
Tough Love Time. I do not know exactly how to physically accomplish such a move for someone who doesn't want to go, but I expect people on this forum will have some ideas.
This is hard. I wish you well.
She gave me the love and encouragement she didn't have as a child, and then some. She made sure I always knew I was loved, I was special, I was worth something... because she didn't feel that way growing up.
So it pains me when I feel twinges resentment or anger. I know I have a right to my feelings, but she isn't doing this to me intentionally. I remind myself of that daily to keep anger in check, but I still get snippy and aggravated easily.
Thank you for the reminder to make those good choices.
My dad had to go into the hospital and then to rehab. I found a place for him in memory care. I took him right from rehab directly to memory care. I spent many hours beating myself up
and feeling guilty.
Now I’m thankful I did it. His health has deteriorated over the past year and he is in a safe place.
I also live out of state and had to have an estate sale and bring my dad to be near me. I did the sale after he was moved here. Not easy! Broke my heart but there was no other way to do it.
Please find a place for mom and keep your life going.
An unhealthy me is bad news for her, too, so I keep saying that this is for her safety as well as mine. She knows it logically; she is exceptionally intelligent. But the emotional side of her is too scared for anything to change.
Perfect example: she's needed double knee replacement for maybe 15 years. Her pain has gotten progressively worse, and her knee joint is just bone on bone, there's no cartilage left. It is so loud you can hear it when she moves. She cries at how bad the pain is. But she refuses to have surgery. Why? "Because I know this pain, and the pain afterwards, if it goes wrong, could be worse." She assumes it'll go badly, the pain will be worse.
Most people look forward to getting new knees, new hips, with all the great advancements that have been made in medicine... I have friends whose parents have run marathons after knee replacements. They expected the best from their surgeries; my mom expects only the absolute worst.
It hurts my heart to know she only thinks the worst is possible for her, but after being this way for 63 years, I know it is unlikely she'll change now.
I'm glad your dad is safe, and you are able to focus on your own health. Gives me hope!
I snap at my mom for things that are trivial. I find it easier knowing she's sleeping so I can't get mad at her for things (both within and out of her control). I remind myself so often that I am not mad at her, I'm mad at the situation. Her body and mind have failed her. Yes, she could have made some different choices 20 years ago to try to slow the physical deterioration, but we all make the choices we think are right at the time.
She prioritized my dad thinking he would always be here to take care of her. Therefore, he was the one worth going to follow-up appointments, doing rehab, listening to the doctors.
Part of it is her self-esteem, too. She doesn't think she's worth it. She doesn't believe she has a purpose on earth, other than "to take up space." If she believed she contributed, I think she'd fight for herself. But that's something she needs therapy for, too, and she's never given it a fair shot.
And thanks to those who responded. Invaluable.
My goal is to try to put some of these things into practice as soon as the holidays are over (when people start to return phone calls, schedule appts, etc). I wish I could fast-forward a few months to see that we're moving in the right direction, but for now, I'm just going to have to believe.
I, too, am very thankful for all the great responses here.
Dad died 5 weeks ago tomorrow. His ashed sit at the funeral home while his grave in a beautiful cemetery waits. Mom's drama continues to overshadow him, she had to be admitted to a mental health hospital a week after he died. She continues to be nasty about everything, now I'm taking care of her house as well as mine and it has been neglected for years.
I have an appointment to start seeing a therapist in two weeks. Letting down my guard to grieve my dad's death has made me realize HOW MUCH I have held in over these years to keep up a brave front, try to keep things from unraveling, trying to oversee my poor father's care at the MC facility, and putting on a smile in my small town (where I grew up and my parents are known) while I tell everyone "oh, my parents are fine, thank you for asking". I have started sharing my awful story with a few friends, and found I am not alone in the "awful mom" drama. My husband's dad is alone (husband's mom died in 2012), and his dad is 81 and totally unchanged from the man I met 30 years ago. He never asks for anything, is fiercely independent. What is up with this mom drama? Why? I don't get it.
"But on a daily basis, she tells me she doesn't want to go, that I'm "dumping her in a nursing home," that she wants to die before any of that could happen."
1) AL is NOT NH
2) Even NH of today are not what they were 'back in the day'
3) Try to make it her choice, not yours
To achieve the above, suggestions are:
1) Find some local ALs and schedule tours/free lunches. Check them yourself beforehand, and pick the ones that might spark some interest in her. The plan is to find a place local to your home, BUT, if she can see these places locally NOW, to get a better idea for what ALs are, it might help. You have time to kill anyway before the January rush of appointments! Now might even be ideal, as the places would be decorated for Xmas! Just schedule it and don't discuss it with her beforehand - just going out and/or doing lunch!
2) Using brochures and the tours from #1, you can reinforce the idea that these are not NHs and certainly nothing like NHs used to be. So many older people have this "image" in their head, and can't get past that ALs are NOT like that!
3) Others suggested choosing your wording carefully, and perhaps providing the options available that she has to choose from (moving closer to you or bringing in help.) If you say you might lose your job/home/BF if you don't return soon and say you'd both be in trouble if any of those happened, she can HELP by helping you/making the choice for her future (I do think her depression really needs to be treated before you can make a lot of headway - while some meds work for some and not so well for others, it may take time and trying other meds if the ones Rxed don't work.)
One option she is resistant to is getting home help. The VA can provide $ for some help to come in. Bringing in help might work if she gets used to them while you're there. Pass them off as friends that are there to help YOU. IF you could swing this, and then return home with promise to come back soon, say you have issues to deal with at home, she can become more used to the person/people who come in.
Another option is once you pick a place near home, talk her into coming to your place for a visit, but she'll have to stay a few days (assuming some places do offer 'respite' care) while you get your place ready (even if there is not a plan to have her in your place - fibs about it, any excuse to delay moving into your place) While she's there, you can make daily visits, have meals with her, take her out, socialize with others, to get her mind off why she is there and let her see that you can be there for her without jeopardizing your job
Our mother was resistant to moving anywhere, and even though she planned to move to AL when she thought it was time, with dementia all bets are off! Any mention of AL was met with derision and stating that she would NEVER live in one of those places! She used to visit local ones and take the free lunch/tour, and indicate her plans to move eventually, but the dementia convinced her that she was 'fine', 'independent' and 'could cook.' Self-perception takes a real nose dive sometimes with dementia!
So glad you lurked and finally came out into the open. You certainly are not alone. While it might seem sad you have no siblings to help, sometimes it is for the best - not all siblings are jerks, many are hard-working and contribute what help they can, but there are so many who either refuse to help or even visit and others who try to take you down! I have 2 brothers, but sometimes I would wonder if I am an only child!
We have an order for in-home care from her doctor, but thanks to the holidays we haven't actually gotten the evaluation set up. But that is the first step, at least so she can see a) that people might be able to suggest ways to improve her mobility (occupational therapy) and b) that there are trained professionals who can come in to assist that will do far better than I can!
While I like the idea of taking her to a nice AL community that she could see for herself, there's no tricking her. She doesn't leave the house unless absolutely necessary (no going to lunch, no running errands, etc). She maybe leaves the house once a month for a doctor's appointment, and that's only recently because I've made her. So I'd need her to be on board with going, and usually she cancels any appointments we make day-of because she makes herself sick over it.
I do understand siblings can complicate things, and for that, I am thankful there is no one trying to undermine or take from my mom. It's been so long since I've just been her daughter that I don't even know what that would feel like anymore, but I'd kind of like to try.
You will likely NOT get to work through her failings with you. Try to accept the fact that at times she acknowledges it, as your verification & perhaps vindication.
You can not resolve her grief. Just let her talk! Don't challenge, they are her feelings!
Do get doctors to monitor her Potassium and Thyroid closely, even if she has no history. These, changed I eating, and medications can cause the over response, and she is as unable to control it as you are.
Did you know that Grief looks so much like Depression that guidelines do not allow a Depression diagnosis until at least a year after the loss of a loved one! That is how powerful it is & even low level medical changes I mentioned, plus dehydration! will cause these symptoms.
You are 100% correct that the brain trauma is a huge factor. Now what can help:
Prayer & meditation, actually saying a prayer, words to a favorite song, or poem, or Olde Irish Saying, etc. on a frequent basis changes the brain. Heals it physically.
Go to the library and get some music from the days of her prime. Find something she finds pleasing. Play it often during the day.
Do the same for yourself! Music is healing. Even if at times it brings up deep grief..as long as not linked to a traumatic event, it will help.
Everyone grieves differently!!!
The thoughts and behaviors you describe are very common! Just be sure she is safe! No access to intentional or accidental overdose. Remember Tylenol & cough syrup ODs are fatal!
Hydration, nutrition, and the wonderful care you describe are your focus. When she goes negative, you can say things like, " That would be horrible"
Start bringing in Respite help. Even if you stay at the house while they are there...but do try to take 5-10 minutes to walk outside, of find a quiet place for yourself while they are there.
You are going to need more help. So start bringing it in a little at a time. Don't ask permission!!! Just do it!
Even if you sit with helper I earshot of your Mom, and talk about general chit chat, or better positive memories, it will acclimate her, reduce the feelings of intrusion.
The holidays will be hard, but do something extra kind for yourself. Maybe invite a neighbor to drop by to say Hi to your Mom. Accept all offers for visits, put calls on speaker, let the world in, even if she objects.
Prayers and good thoughts are coming your way.
And my mom periodically will get nervous about her finances and me not managing them properly. Or that I might run off with them and/or leave her in a home. Good luck to us both.
It's definitely a dismal place to be in. I will be reading the answers you get too. Happy Holidays!
She has suffered from depressions and anxiety most of my life, so that isn't new. But she has been on the wrong meds for years. Maybe they help a tiny bit, but certainly not enough.
Layering the grief and fear on top of it though is just unbearable, for her and for me.
Best of luck to you, too. I can't say I take comfort in knowing so many others are in the same boat. It makes me feel sad for us all, and I pray we all get some much needed cheer in the new year.
They are childhood stories. They are not the nuanced, adult version of the truth. I'm not trying to knock your mom, but there is an element of drama, guilt and obligation in a story like the one she tells that is designed to keep you locked up in the "castle".
Your mom clearly had a rotten childhood and the scars show. She repaired that to some extent by giving you a better childhood than she had.
But what she's doing right now? It's damaging you both physically and mentally. I'm not sure why you're not angry at her AND the situation.
Yes, maybe her knee replacements will go badly. Yes, maybe a facility won't be perfect. But since THIS plan (you being her sole caregiver) won't continue beyond a date that is of YOUR choosing, she has to change something.
There is something called "locus of control"--what is within your ability to control is YOUR behavior and actions.
What is within your mother's locus of control? Right now it seems like she is relying on her ability to be helpless and hopeless to control your behavior and force you into a lifetime of caregiving. This is an unhealthy situation for her AND for you.
I would think that your mom would be ashamed of taking your life away like this when help for what ails her--depression and joint pain--is so readily available.
A woman named Marilyn Saviola passed away recently. She lived in my building. Marilyn had polio as a child and was a quadriplegic. Lived in a power wheelchair. Was on a respirator. Fought her way out of permanent placement in a rehab hospital as a young adult and earned bachelor and Master's degrees and went on to help run a major advocacy organization. Went out to work every day in her own wheelchair van.
Her funeral was packed with dozens of other folks in wheelchairs who go to work every day in my city.
https://www.google.com/amp/s/www.nytimes.com/2019/12/01/health/marilyn-saviola-dead.amp.html
I understand only too well what a destructive force depression can be. But sometimes folks who are depressed need to be forced into getting help by a change in the enabling behavior of those around them. Be the agent of change in this story.
If what I'm saying makes you angry, if I seem to have too little sympathy for your mom, I apologize . But I perceive this story as one of unhealthy relationships that wants changing.
To be fair, my mom doesn't tell the abortion story, almost ever. She does tell stories about things her father said to her, reasons why she always felt inadequate, etc. But she doesn't tell that one, I tell it. I tell it because I'm trying to justify it all in my own mind. She risked her life for me, so now I'm putting mine in jeopardy for her. So it's got to be fair, right? (Wrong, I know)
When I hear about people like Marilyn, I realize how petty our concerns are in comparison... and yet they're all we know. It's kind of like a child crying over a broken toy, or a teenager's first breakup in high school: It IS the end of the world to them.
And thank god for the Marilyns of the world. She made a massive impact and improved the lives of millions.
But you're right. I do want something to change. I want my mom to be taken care of, I want her to want to strive to be better, and I want to somehow keep going with my life, whatever it may bring. Wanting and doing are two different things, so that's where I need to focus.
There have been a lot of pearls of wisdom in this thread, but this may be the biggest of them all. Thank you.
One of the core deficits that I noticed in my mom post stroke was a dreadful increase in anxiety and a profound inability to bring her formerly impressive resources to bear to solve problems. Ants in her kitchen, a burned out lightbulb, a storm happening 600 miles away were all disasters that needed out immediate attention.
No amount of reassurance helped. In home care did not help.
Meds helped. (Having one of us, her adult kids helped to a certain extent, but that wasnt sustainable. We all had mortgages. The idea of one of us giving up our livelihood was unthinkable. To us.)
If your dad was getting SSDI, it looks to ne like this indicates that your mom would be eligible for 100% of his benefit.
Is she willing to go to the SS appointment? Where else can you take her while she's out of the house?
And yes, she has promised she will go to the appointment. She knows her future depends on it. It's on January 2. We also have a doctor's appointment that day to follow up on some things. I'm going to bring up the vascular dementia when we go (thank you for mentioning that).
I wish the practice had a psychiatrist or someone in the building we could have there to provide a consult or heck, an intervention, but that isn't the case.
I've been researching the Psychology Today docs that take TriCare (not a ton), so far no luck in getting anything scheduled yet.
The fact that your mother has had a stroke and possibly some cognitive impairment may mean that her reasoning abilities and insight are now lacking. So it's possible that she will NEVER come to the idea on her own that change needs to happen.
It may be that you are going to need to go into "take charge" mode. Not mean, just brisk and "now it's time to..." way of managing your mom's life.
Hope you and mom have a lovely day.
My mom chose to sleep most of the day. I spent the day reading in silence. I'm thankful it's over... one more big holiday down, only one more to go (for a while).
As for weight loss make Peel A Pound Soup. It is guaranteed to take off between 8 and 13 pounds in a week of eating. You will love it. I swear by it. Mom loves it too.
God bless.
I understand about the very difficult ups and downs of emotions, both for my mom and for me. I also know how hard it is, especially when they won't cooperate and resist everything you try to do for them.
Dr. says she is high fall risk. She won't budge to leave the house to move to a facility nor to our area; not eating right, etc. I have explained to her that we are unable to move to her area due to our commitments here and my husband's job (which he is still having to work so that I can have the time to spend working on her behalf). It is very likely that we are just one event away from a nursing home or assisted living, in which case, everything will change again.
My husband has a full time corporate job and I have a business that I have had to almost completely stop working in over the past 3 to 4 months so that I could start managing her financial and medical affairs on her behalf. But I must get back to my business right away and am working on plans now to do so ASAP.
I contacted someone early in December at the Alzheimer's Association in mom's hometown who has offered to help with resources and visits and have also contacted her LTC company about paying for and getting some in home care help (making meals, cleaning, etc.) for her right away.
As a new year's resolution, I have also made a decision that for her care and well being, as well as for my own health and well being, I am going to hire a Geriatric Care Manager to advise me on how to handle the situation with her. They will also recommend and send approved home care workers in her area to help her until an event would cause us to change course and move her into a facility either there or closer to us to ensure that she is safe and well. They will also work with the insurance company to set things up as they already have the contacts in place.
I am also talking with several counselors at my church who have experience with eldercare issues and are helping mt to think more clearly about the situation and what I can and cannot do, and the boundaries I need to set to protect myself and my husband as well.
Hopefully this may give you some ideas to try and at least some people to talk with about your situation so that you are not going it alone.
Sending prayers for God to give you strength, peace, rest, comfort, and courage as you move forward in setting boundaries and decision making that will benefit both you and your mom both now and in the long term.