I’m #4 out 5 siblings & the only one caring for my mom of only 65 yrs. I’m in my late 30’s, no kids yet (2 miscarriages in the last 2 yrs). She has undiagnosed dementia or Parkinson’s dementia. We are waiting for the full evaluation (after 1 1/2 of doctor visits for irregular behavior which started suddenly on 10/7/23). The change was so drastic that I had to take a leave from work for 8 months & provided 24/7 care.
Learned all her medical things, took care of home, bills, installed a camera in the living room and her room after she fainted while I was away and the fire department had to break our door down to get in. This has caused a financial toll and I’m finding it hard to recover. After 9 months of me alone… I finally was able to get 24/7 care at home (I would never put her in a home and I promised her I wouldn’t). I went back to work as much as I could but I lost 2 jobs in the process (had 4) of taking the time off.
Financially, I have no more resources to pull from. Our relationship was good with a few bumps, but lately I can’t help but feel so angry all the time. She blames me for infringing on her freedom, she wants a companion - like I have, keeping locked in a cage, and watched all the time, because she has aides that stay with her in the home and I’ve had to install cameras in the house. I tell her to go out, but then she states she has no money, that I don’t give her money. Ha! From where?!!!
I want her to go to senior centers and she refuses. I want her to meet people and maybe find a man but nope. She blamed me for all her admirers “ghosting” her. When she misses doc appts, I tend to talk loudly and ask her why? She states she either wasn’t in the mood, feels sick with #3, or feels weak. This causes me to lose it… it’s hard to get doct appts and usually they are far, so when one is lost it hurts my soul. I’ve spent hours calling and tracking down places to be able to get a spot, for her to just “lose it”.
My mother thinks I hate her (not true, I love her so much), I hate her disease. And she mentions she wants to move out and leave me (it’s her apt). I have asked one sibling to move in and they said no, the others have “their lives too.” So I feel trapped. I want to help. You have no idea how much it hurts to be able to help in everything but I can’t. I feel horrible for wanting to disappear and leave her to the whims of my siblings and the system.
My mother is a good person who’s had a horrible upbringing herself. Can’t help but miss the person she was and feel grief for “losing” her. I feel my life is being sucked dry by this and I can’t get anything right anymore. I don’t know what to do?
First, shout out to AgingCare.com for this wonderful community and a place to express a caregiver’s feelings. Amazing to hear/read how many folks are in the same situation & able to offer good advice - sometimes the truth hurts, sometimes funny, but most times helpful.
I feel for you because you deeply care about your mom; it hurts for sure. And I agree with all that has been said by the community. Please give yourself permission (only you can & should) to renegotiate the promise to mom. Pause, let that sit… give yourself the permission because you are now the grown adult needing to care for your mom. The plot twist of it all.
If she was in her healthy state of mind, I presume she would say to you, “Sweetheart, go live your life; I got this.” Well dementia is nasty & flips the household upside down, so understandably, you’re both struggling. You are by no means a failure, if you think this. Okay to get help! From professional caregivers who fortunately do not have an emotional backstory with mom & your family that would interfere with their proper care, yet sensitive to mom’s needs (shop places wisely), your mom will truly receive healthier benefits, and indirectly so will you. The old promise is ineffective for her dementia.
The new promise-goal can be: Improve mom’s quality of life, with her dementia, by moving her into a safer & life-enriching circle at the awesome senior community. (Guaranteed this process will be difficult & stressful, but life will ease into a better situation for all involved. She & you deserve it.) ❤️
My heart goes out to you.
I'd recommend you google Teepa Snow, one of the country's leading experts on dementia. Watch her webinars, You Tubes "how to communicate with a person with dementia'. What will this help you with? Learning to separate your mom's anger from 'it' being personal to you ... learning to / developing compassion for yourself and your mom.
* Know that your mom isn't intentionally being mean to you. The anger is due to her brain changing and her fears of the unknown, losing independence. She is very scared.
- While this is very easy to say, it certainly isn't as easy to actually do (NOT take her behavior personally). It is a practice. And you need to 'self-talk' all the time (she can't help it; she doesn't mean it ...)
Then ...
As needed ... takes breaks. From a minute to 20 minutes to several hours.
You need to shift the energy and how you feel and you do this by separating yourself 'in the moment' from situations that trigger you.
- Do not 'stay there and take it and feel sad, bad, and miserable. Leave for a few minutes to a few hours.
- Get help. You are so very young to have this care burden ...
- I understand completely your feelings "my life is being sucked dry..."
Do realize that if you do not make changes, you will continue to be depleted.
* Know that you matter.
* Know that the quality of YOUR life matters.
* Learn to love yourself in new ways ... take a hot bath, go shopping, get together with friends for lunch ... go to the movies.
In order to be your best self for your mom, you need to do what you need to be your best self for YOU, first.
I would recommend you get into therapy to understand boundaries, self-care, and how to validate yourself in a very difficult situation - with compassion and understanding for YOURSELF and your Mom.
Personally, educating myself (reading, trainings, You Tubes) - understand how the brain changes helped me become more compassionate - which gives me a 'cushion' or 'separation' between my hurt-pain-feeling rejected --- you need to find that separation area so you can make choices that are in your best interest. The quality of YOUR life matters.
You are not alone.
Let us know how you are doing.
Here's a hug.
Gena / Touch Matters
Try and find a social worker or a geriatric care manager who can help evaluate your situation and suggest resources and solutions tailored to your needs.
Do you have POA? I think its time for you to move mother into a care home (for your health as well as hers and be compensated for the money spent which you vitally need back now.
I think you need to consult legal and find out what legally can be done as well.
We can all make promises before we know the true extend to what that promise entails and for you - that means giving up your own life and funds. Sometimes in life you have to back track. Your mother is in agreement - she wants a different level of freedom. Sometimes the looking after and fuss can be suffocating and your mother not want or need it. As for you that will equate in feeling unappreciated and hurt. That builds up over time and can become very destructive. Your mother is in agreement to move out - check how you can move forward with this decision. You are young. I would say you have given up enough of your life. Check how you can regain your own life. As for your siblings after you find this info maybe a family discussion that you cant cope anymore and your mother wants to move out so you are arranging it. (hoping you will have accommodation etc)
So I'd give her a hug and move o
It got so that sometimes I gave her a hug she'd ask, "what did I do wrong now".
They are in a different world and it's hard to enter.
Be patient and forgiving. Lots of hugs
I'm in a very similar situation and when push came to shove, I resorted to placing my mother in AL which provides 24/7 care for various stages of elderly decline. At times, my mother feels that it's the best place to be, with her newfound friends and activities, while other days, she's angry about the life she's left behind. I have come to understand that what we try to avoid is the grieving of their past life. Let's face it! this is another chapter of their life, and the best place for your mother is with other elderly people going through the same things. I have met other caregivers at the AL home, and let me reassure you, that we are ALL experiencing the exact situation. Placing my mother in AL has helped me in being within a community of wonderful 24/7 support. The office staff are wonderful, the PSW, nurses, events coordinator, kitchen staff, occupational therapist, exercise classes, bingo, monthly birthday parties, crafts, hair and pedicure services. I can see that the AL has added to my mother's lifespan. She no longer talks to invisible people or feels trapped and confined. Place your mother in a nice place where she's surrounded by career caregivers. Choose wisely! They are the best people you will ever meet!
My wife and I have been in the crucible over the past year plus. Her dad was living with us until last month. He just turned 90, but after a stroke we've had to move him to a SNF that's very near our house, and he's now in hospice care. My dad had a major stroke about 18 months ago, never regained the ability to walk or talk, and died this past September. My mom's dementia has been rapidly getting worse, and the family are all glad she finally agreed to move to AL, which is also very near our house.
It's all been a lot. Taking care of her dad for so long was really hard on my wife. I'm thankful we've been able to get them into nearby facilities. I still work full-time, and there's no way we could have taken care of my dad or my mom at home.
I want to tell you that getting help for your mother may save your life. Extreme stress has killed several loving caregivers ahead of their recipients. Not fair!
It’s time for a new plan for Mom’s care . This is no longer working for you .
Sometimes we have to break promises- that’s what divorce is all about. What if she ‘made you promise that you won’t let her die’? Could you live up to it? Those ‘promises’ are unfair, and you are the living proof of that.
If YOU “feel my life is being sucked dry by this”, no wonder she thinks you hate her! Perhaps she realises that you really do have reasons to feel that way, and she’s correct about that.
Your siblings are acting normally, and in any case you can’t change them. You don’t have to “leave M to the whims of my siblings and the system”. Talk to your siblings about a better arrangement, and go and look to find the best available. It helps if you all agree, and can also agree about visits so that M knows you all still care about her.
Your other siblings got smart and backed out. Time for you to do the same.
I wish I could go back in time to when she was 30, and say "Mom, if you don't want to be in a dementia care facility, then you need to save up AT LEAST one million dollars to afford around the clock care in your home, because I won't be quitting my marriage or my job for 20 years to run your life and drag your body around day and night. Call a senior care advisor NOW, mom and get your plan on paper."
Everybody needs to be getting this straight because nationwide dementia cases are going to hit us like a tidal wave soon.
One of the things I have seen the most on this forum is "but mama made me promise to keep her at home."
My goodness, telling someone you don't want to be put in a senior facility or a nursing home is like telling them you don't want to be taken to a hospital if your leg gets cut off.
I mean, we kind of have no choice in where we should be cared for when our bodies and brains are damaged. I'm mentally preparing myself to end up in a nursing home someday. I'm certain I won't enjoy it, but like the M&M candy said, "Tough noogies."
I also have the feeling that people who demand promises don't realize that dementia drags on for a decade or two and can cripple a person to the point of needing to be lifted by two young people. My mom kept saying, "What difference does it make, I'll be dead soon anyway? You can rest after I'm dead!" (Eight years later she's still very much alive and she's texting me some of her demands at this very moment as I type. She wants me to buy presents for her to give to people. Lord help us. She doesn't understand her money situation, AND she still thinks she's going to die in a couple months.)
Dementia care is a job for a team of paid people, it's not a good long-term life choice for a daughter or son. Those paid people cost WAY less and have more resources at their disposal in a senior care home. My mom paints pictures and plays Bingo, smiling and joking. When I walk in she starts complaining about everything and says I took her house away from her. (She was miserable and terrified in that tumble-down house.)
"This place isn't like my real home and it smells like pee-pee diapers!"
Yes, true. Some things can't be helped. Dementia is not Disneyland.
People with dementia cannot be made "happy". Life will never be the way it was. Even when I give her specifically what she asks for, she goes immediately on to something else that is making her angry and agitated.
She's safe though. And I can work and earn money for my own eventual dementia care and paint my own pumpkins.
It's not her fault she has dementia.
It's not my fault she has dementia.
We are doing the best we can.
Please don't burn yourself out and suddenly find yourself thinking how nice it would be if you didn't exist in this world. That can creep up unexpectedly when your mind gets too worn out.
Hugs to you.
You need fully to understand that, because that is real life. No one loves their caregiver. A caregiver sets limits, install cameras, dictates doctor visits and diets and cleanliness and all the thing we do not WANT dictated to us.
So that is for starters. You are the caregiver. You willingly took that on. You will NOT BE THANKED FOR THAT.
I am sorry to sound harsh, but you have a lot of quite "romantic" and "idealistic" thoughts and feelings. Such as you "promised" your mom she wouldn't go into care. You would "never consider" care for her.
Your mother is my daughter's age. In another TWO decades she will be my age. And where will you be?
If you are going to throw your own life onto the burning funeral pyre or a person who already HAD her life, then you will have to accept it is a slow burn. You are likely to spend the next two decades angry, frustrated, blaming (doctors, siblings, god, et al) the fates that you have no life.
You have spent your own money. Of all the things one must never do that comes in pretty much first for me. It takes a lifetime of clipping coupons, good luck, and hard work to have funds to manage your own care as you WISH TO when you retire. It now looks as though early Alzheimer's may be in your family (you say diagnostics are happening; that's crucial). Please do not do that any more.
This is not going to get better. It is going to get worse. Your mom won't be able to be alone. You will be a slave in her home or in your own. You will need an attorney to do papers and care contracts. We on AC have seen people broken and gone close to mental breakdown. Go down to discussions portion here today and just read them.
I am so dreadfully sorry for what has happened to your mother. I am so dreadfully sorry you must stand witness to this loss for which there is UTTERLY no answer. But if you are going to waste your life on this, that's your adult decision, and you will bear the consequences of it. And you will make NO ONE HAPPIER for this. Because this is not about happiness. This is about tragedy and this is about losses, one after another until you won't know where the tears are even coming from anymore.
I am so dreadfully, dreadfully sorry. I have leveled on you the WORST CASE SCRENARIO here. And I hope I am wrong as I can be. But I need you to look at it, listen to me, and consider. Because you are now making decisions for a mom who needs not you, but several shifts of several people each to care for her. I truly wish you the best. Truly my heart goes out to you in this deep pain.
Our stories are similar, though years apart. Won’t know yet what my mom has until after the evaluation, but her hands shake and her knees get weak often. I did work as her caregiver too, it helped to be there 24/7, but it was a lonely road and short lived. Cognitively, she is still with me, not 100% but still able to make decisions (kinda). She’s only forgotten who I am twice while under extreme duress. So I know it’s coming.
At the point of no recognition, I think I would consider memory care immediately. Especially because they can become violent. You have a family, you’ll want to protect them.
I wish you the best in life.
Why so long to diagnosis?
Since she's already receiving in-home help, can she get more, to allow you to change your role to visiting support?
The more care she has, the less you'll need to be on duty, being distracted away from your work. The more care she has - is she eligible for Medicaid, to receive nursing home level care at home? - the more you're free to explore career options & learning possibilities (Google has certificate courses that can place you in a well-paying job within a year)
Consigning her to the care of others is a valid way of taking care of Mom.
Doctors didn’t believe me when I brought her in for evaluations. They also stated they can only treat one issue at a time, she also have a very large DVT on her leg and that took priority always.
it wasn’t until recently, that she was finally seen by neuro. So, it’s been a work in progress. I am working to distance myself more and more from being her caregiver and into the “visiting role” thanks to my job.
thank you.
Meanwhile, you need to rebuild your own life. You deserve it.
1 - Have mom evaluated by a medical doctor - to evaluate for medical conditions that could be causing her problems... and get treatment.
2 - Have mom evaluated by a neurologist - to evaluate for cognitive problems like dementia. Different types of dementia have different treatments.
3 - If no neuro or medical problems, have mom evaluated by a psychiatrist for mental health issues.
Schedule these appointments for times when you can be with her. Take a list of questions. Write down whatever answers you get.
You may wish to care for your mom at home, but her care may require more help than you can provide - physically or financially. Ask the doctors about what help she may qualify for - home health, skilled nursing facility... Accept that the best care you can provide is making sure your mom is well cared for, even if that means care from others,
At your age (or, perhaps a bit younger) I also would have been unwilling to put my mum in a care home. I would also have placed undue weight to a promise made, even though it wasn't a sensible one to make.
Fast forward 20 years and I wanted to place my mum in care because I felt that was the best place to have her needs met. Her husband still thinks with his emotions and he had the final say, so I had to fight to ensure Mum had comfort and peace in her last days.
Also, I now realise that it's wrong to throw our own lives onto the bonfire of our parents' lives. They've had their lives.
Now, it's time for you to live your life and be part of the world. You need to work, have experiences, relationships - all the things that enable you to grow old and have a good life along the way.
You can't do any of this while you're an unappreciated carer, 24/7.
Your relationship with your mum will continue to deteriorate, as her condition deteriorates. You may as well let her be angry with you while you live your life, as opposed to being angry with you while you live for her.
Mom could be in a facility where she gets kind care from professionals who know how to deal with her issues. Instead you want help from siblings (not gonna happen).
Rethink it. Look at some care facilities. Stop expecting siblings to help. Realize that you’ve bitten off more than you can chew and are choking on it. Then act accordingly, putting yourself first. Like your siblings, you have a life to live, and it’s okay to live it.
You don't mention a husband, so I hope and pray that you're not trying to bring a baby into this world when it doesn't sound like you have a job or your own place to live.
Instead you need to move out of your moms house or apartment, get a job and KEEP it, and start saving for your own future.
Your mom will have to figure things out on her own or with the help of one of your other siblings. And if they don't step up to help you can always call APS and report your mom, and let them take things from there.
You say you think that your mom has some form of dementia, yet you also say that you want her to "find a man." What man in their right mind would want to date or be with a woman who has dementia and has no money?
I hope you're not allowing your mom to drive with her broken brain, as that is no different than someone driving drunk or high on drugs.
Your mom IS NOT your responsibility nor is she any of your siblings responsibility.
What is your responsibility is getting and keeping your life on track, and being a productive citizen. If your mom was in her right mind she would want that for you as well.
It sounds almost like you have an unhealthy co-dependent relationship with your mom and at your age that isn't good for you or her.
So I hope you'll take the necessary steps to get your life back on track and move out, and let the chips fall where they may with your mom.
Everyone seeks companionship and that’s not a crime. It’s human nature.
Obviously, healthy, mentally capable men are not seeking unstable and dementia people for relationships. She doesn’t drive either.
We’re law abiding productive citizens too.
You’re right on one thing, we do have a codependent relationship. I see that more and more now.
I am looking to move out soon.
take care.
I have a 401k and health insurance. As of today, I’m seeing a therapist too.
67 but thats 100%. You can start collecting at 62 and after, you just get a lower %. She should be on Medicare at 65. If she has no income maybe Medicaid for healthcare.