I'm the sole caregiver for my mother-84 (she never wanted anyone but me involved, so it's by her choice). I've a husband, but he's never part of the day-to-day; he never sees her, and I try not to overwhelm him. I feel like I'm about to just burst into tears at times, like I'm losing a relationship of trust and mutual protection we built up over a lifetime.
Lately, everything I do to help her is met with negative resistance. It starts the moment she wakes up. I try to urge her to get out of bed, maybe get some exercise, have some breakfast, and the responses are met with, "What's the point of eating now? I'm not hungry." Or, "Why should I have to get up? I just want to sleep. It's not your job to take care of me." Sometimes it's just confusion. I can handle confusion.
I just added a bed rail for her safety and was trying to enlist her help to position it. She reacted apprehensively, "I hope you didn't waste money on that. I don't need that." I even found her wearing sneakers today (she always wears sandals) because she says she needs to be ready to leave, afraid of ME. :-O
Then there's her history-rewriting. A year ago, we agreed I'd hold her phone because she was having night terrors and would start to write relatives in a panic, things like, "Help! I think I'm the only one in the house!" Similarly, last night she told Alexa, essentially, "Help! I’m scared! She took my phone away AGAIN," as if it just happened this morning. I know I'm not perfect. I have said regrettable things. I've reacted to the cyclical conversations shortly at times, but I know I'm good to her. When I reminded her the next day (today) what she'd said to Alexa, why I had the phone in the first place, and that I'd offered it back many times but she'd refused, what she took from it was: "I only wrote my sister once like that!" Not true, but I didn't argue.
Yesterday, after getting nothing but resistance and negativity all day, my voice elevated, which has happened more lately (out of frustration, not anger, and I at least believe there's a big difference). I nearly begged her, "Why can't you just help me help you? Why do you have to make everything so difficult?" She told me my reaction was awful and that I scared her, and that I should've seen my face when I said that. Apparently, I have a "resting ugly face," because while I wasn't out of control, that’s all she saw. I’ve never hurt her and never would, and I reminded her of that, and she said, "Yes, but it COULD happen."
I feel like I’m being thrown to the wolves by a narrative her brain's inventing, and I'm losing her in the process. How do you handle the heartbreak of being feared and vilified by the one person you care for and are caring for more than anyone else? How do you keep going when your ugly face is all they see, no matter how much you're worrying about them and trying to do the right thing?
This is all new to me (a year in now). I didn't walk into this knowing how to care for a parent with dementia. It’s a continual process in which you have to adjust your approach almost daily. Just when I think I've figured out a way to keep her safe or keep her fed, the "rules" of her reality change. I'm learning on the fly, trying to be the protector, the nurse, the daughter, and the villain all at once. I know she can't see reason, though I keep trying to make her see it. I know I need to just walk away when I'm frustrated, but I keep wanting to fix it. Like, maybe something I can say will just make her see reality. It's all cause and effect, I might say. I'm not some scary witch walking into your room with a broomstick. I'm just trying to figure out how to take care of you, when you won't let me. "Well, maybe someone else should take care of me then."
I remind her, "I make sure you get your meds, nutrition shakes, try to keep you on a schedule, keep you eating and active enough, position you in bed, tuck you in." She said, "I bet you'd love it if I wasn't around anymore."
I miss my person.
I suggest you use moms money to hire help in home. Oftentimes they're much nicer to strangers than they are to us, their own daughters. I've seen it a thousand times. They save the ugliness for us, it's the nature of the beast. You have to figure out a way to save YOURSELF now, lest you go down with mom. It happens, too, where the caregiver dies before the loved one, God forbid, especially when dementia is involved. You need respite and time for yourself and your husband. Mom is lost to the disease now, so there's only so much you can (or should) tolerate.
Wishing you the best of luck with a difficult situation.
This is my aunt, however, and not my mother. This has doubly have to hurt.
All you can do is continue to love her and do what you can without losing yourself and also keeping boundaries for yourself.
I wish you all the best.
You need help.
You also need to reconnect with your family, your life.
Mom needs to hire caregivers that can help you help her.
she will resist.
you will resist.
She needs to accept that you need help
You need to accept that you need help.
No one will care for her EXACTLY the way you do.
But if a caregiver can help keep her occupied, clean, dry, fed and safe that is all you can ask of anyone INCLUDING yourself.
If there is a cost factor you can check with your local Senior Service Center or Area Agency on Aging and see if she qualifies for any programs they may be aware of.
If she or her husband were in the Service the VA may have programs that she would benefit from.
Also find out if there is an Adult Day program in the area. Typically they will pick up participants in the morning, they get a breakfast, lunch a snack and plenty of activities and then returned home. this was a game changer for me as far as getting a break!
You both need more help.
You will be a better caregiver if you get a break and are able to care for yourself. I can tell you from my experience that just 3 or 4 hours a day 2 or 3 days a week is like a mini vacation!
But your mother is losing her very being.
Your mother is losing all control over her life.
And your mother is watching her darling daughter turning into her caregiver.
It is awful to tell you this, but NO ONE likes their caregiver.
And when that caregiver is family, then they feel FREE to tell you so.
It is time now to consider placement. If she is well enough for ALF then that would give her companionship with people she can identify with.
If she needs memory care, that is sadder, and she will mourn it, as will you.
You can continue on as you are, but the losses will be more and more rapid, more and more profound, more and more heartbreaking and they will be completely without any answer.
One of the things on this Forum I have to say over and over and over again, sadly is the truth:
Giving up your own life, throwing it on the burning funeral pyre of your parent WILL NOT make EITHER of you happy.
You have lost the mother you knew, one with whom you formed bonds of loyalty and friendship. She is now a shell of who she was, fighting to keep every single ounce of who she was, and fighting for at least SOME CONTROL over her own life.
Not everything can be fixed. You aren't responsible to
fix anything here. You can't do so.
I am 84. It would break my heart to think that my daughter, now in her 60s and just beginning to face down some of her own body-issues, would sacrifice her life to me. Simply break my heart. And she KNOWS that. It is something we have long discussed.
You must make your own decisions for your own life. And sadly will be responsible for the outcome of them. As I said, it will make NEITHER of you happy.
When was the last time your husband and you spent a quiet night at home?
When was the last time your husband and you took a weekend away?
When was the last time your husband and you took a 7 day cruise?
When was the last time your husband and you went out to dinner? A movie? Were intimate?
Isn’t your husband “your person”?
Please try to give your husband and marriage some priority. This is really important. I can’t stress that enough. After she is gone you just might not have a marriage.
The doctor told me “ Your mother will never be happy again or nice to you and will only get worse “.
Your mother has reached this point as well. Place your mother and return to your marriage .
Visit Mom in short visits once or twice a week to make sure she is being cared for , don’t stick around to be berated by her .,if she is nice you can stay longer and visit more often. If she’s not nice you come up with an excuse to leave like you have an errand to run or you tell Mom you’ll visit her when she’s in a better mood.
Go back to being her daughter and advocate without being the fulltime hands on caregiver. Sorry to say that the relationship with Mom will most likely not get a whole lot better .
My mom finally got pleasant the last couple of months before she died . She said she knew she didn’t have much time left.
I doubt getting help in the house will help you, your mother will protest and berate you. But you can try it . I more seriously doubt your mother will be willing to get out of bed on schedule to go to adult daycare .
You did not make Mom old or in need of care . You can’t fix this.
As others have said, your husband needs to be your person, not your mother. Don't sacrifice your marriage for your parent.
Talk with her doctor(s) about medication to calm her anxiety. If she's typing distressed messages to other people, it's because she's in distress. Taking away the phone solves part of the problem, but not the root problem, which is the anxiety and whatever else (night terrors, panic attacks, hallucinations, confusion) are causing the distress. Of course she's upset. Anyone would be if it happened to them. She needs medication to treat those symptoms.
You can't get her back, I'm sorry. This is just her brain being broken, and breaking further down all the time. It's not personal to you, even though it is. It's not about you. It's focused on you because you are there, but she isn't mad at you, your face isn't really ugly. I will say that I had to learn to put on a "happier face" and try to smile at my mom. I realized that I was often using a face between fear and strain and concern and for these people, our faces may give them the wrong idea.
I know it hurts but you are taking this entire thing far too personally. There is no way to convince her of the need for shakes etc and if you stop hoping for her to validate your feelings and actions you will save yourself a lot of stress. Look, you are taking care of her. If she were in her right mind she'd be happy someone was there for her. When I was 4 I was very angry to be taken to the hospital after I cracked my head open and I screamed at my mom that I hated her because she took me to the hospital. My mom cried about that but obviously I am grateful she took me, now that I am much older. She did it out of love, but I couldn't know that at the time. What is happening is similar here.
When she says she thinks you would love it if she were gone, just say something like,
"Mom, I will be very sad when you are gone. It may be hard at times to take good care of you but I am doing the best I can. I know it must be so hard for you to have to be taken care of but I am doing it because I love you. I love you mom."
And that's that. She is expressing her fears and doubts. Don't blame her for her broken brain and don't take these things personally.
Taking care of my mom, I realized that she had to do all these things I told her to do, get up, go to sleep, eat this, take this pill, sit here, don't sit there, you have to wear briefs now, etc. She used to take care of herself and everyone else around her and now she was faced with not being able to make most of her own decisions. Even though she had dementia, she was still aware of who I was, who she was, what was going on, etc.
So there were times when I would say it was time to go to bed, and she would say no. Sometimes in the beginning there were arguments and I would become stressed and angry and sad. I was tired. She couldn't stay up by herself because it wasn't safe. I would tell her all this and she would smile and I'd say, so it's time to go to bed. She would say no. Not all the time, just sometimes. Same thing with pills. "No."
Well, this is because she had little control over anything and so she thought she would take control on this issue at that time. Mostly I could resolve these issues with just words. In one memorable incident my husband and I picked her up and carried her to her bed. No matter how things happened, each night I would kiss her on the cheek and say "Goodnight, I love you, I'll see you tomorrow" and she would say something like "Yes, you will" or "I love you too", etc.
If you take this all to heart you will be heavy hearted and sad all the time. Please separate yourself from the normal emotional response you'd have if this was not dementia related. It will be hard at first but you can do it. You might want to walk away for a bit if she can be left safely, and just breathe. It is sad that she has dementia, don't add to your sadness. That doesn't mean I'm saying don't feel sad at all, just that you have to start understanding she will say things that are difficult or untrue and you shouldn't take those to heart.
Some of us speak plainly and it may sound harsh but I implore you to take it in the spirit it is given. None of the people here are here in any way but voluntarily. They are offering you wisdom and the strength of a co-traveler on this journey you thought you were alone on. You aren't. There are also groups on various social media platforms or in person, if you have the time and are so inclined. Many find that helpful and soothing.
In my case, I took care of my mom for 6.5 years until she died 3 months ago. It went from a broken arm all the way downhill to the end. It changed from day to day and mostly got worse. Some things got easier, like when she stopped trying to get up without assistance, and thereafter rarely fell. But you can see that is not a change completely for the better, and I had to grieve each little loss as it happened.
My mother was the most stubborn person I have ever met and she could have made this very difficult. To my surprise, she mostly did not, although I also had the benefit of learning to detach from aspects of this situation. It was a healthy detachment, mostly, because I was aware there were things I had to do that were for her own good that she would not like at all. But I also had a good relationship with her prior to 2019 when all of this began, although it wasn't as if I knew what I was doing at all at first. There were delicate dances of having to take over things she would do for herself, and aspects of me becoming the person in charge when before she was in charge of herself. I know I am lucky in many respects when it came to taking care of my mom.
One way I was and am lucky is that years before all of this, I studied some philosophy and religion that allowed me to step back from certain things and try to remove the emotional weight attached to, well, attachment. I do not promote any one such thing, but if you have the time, you can do some research into those aspects.
There is so much we cannot control, and facing and accepting that is so important. There are also things that you have to use your intellect for, and emotions can be dealt with separately. The patient can't really do this anymore because of their condition(s). That's ok. You wouldn't get mad at a person with a broken leg for being unable to walk as they did before the break. That is how you have to think of these things. And you have to make sure that you respect her wishes to the greatest extent you can while still doing things in a rational way that helps her. If she is unable to recall why you took her phone, that is ok. You can remind her if you like, but don't expect it to stick, she can't remember things now. Don't allow her emotions to control any situation, as that can lead to absurd situations at best, and dangerous situations at worst.
You need to get positive affirmations from elsewhere in your life. It is unrealistic to expect positive affirmations from someone with alzheimers/dementia.
Get positive affirmations from your husband and other family members. From long term friends. From gym friends. From church friends.
Hire some outside caregivers.
Refocus your life on things other than your mother.
You are on a marathon, not a sprint. Mom's journey with alzheimer's was around 18-20 years. From your descriptions, your mother is very early on in the disease.
Brandee again....
It is okay to grieve the loss of the relationship that you and your mother had prior to her disease.
Don't lose yourself in your attempt to care for her.
I had to physically and emotionally back away from things over the years of caring for Mom. I had to toughen up.
I did see glimmers of my former Mom (prior to the disease) but these were rare....not daily, not weekly, not even monthly.