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?
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.
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.
It’s time for a new plan for Mom’s care . This is no longer working for you .
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.
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.
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
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