My mom who is 86 still has her wits about her. However her body is in bad shape. We’re at the point where she needs 24 hr care, but refuses. She won’t eat without me, she won’t bathe without me, she hasn’t had a decent nights sleep in months. She’s not taking medication as prescribed. She’s claiming all her specialist are trying to kill her. She is in desperate need of wearing a hearing aide but won’t. She’s severely retaining fluids but won’t wear compression stockings. Constantly crying and complaining every single day to me about everything. I’m on the verge of a nervous breakdown.
Now that her cognitive decline/dementia is more pronounced, I can see in retrospect that so much of her stubborn behavior and refusal of help was the result of early dementia. She didn't do things differently as everyone advised her to because she couldn't understand how or remember new instructions - not because she was just 'stubborn and set in her ways.'
She did not 'have all her wits about her,' even though she impressed everyone who met her with how sharp she was, even me. It took me a long time to admit this, I was so used to her being the smartest one in the room, and she still acted as though she was.
I think that if you acknowledge that she no longer has all her wits about her, it will be easier to get her the help she now needs. And good luck, it is never easy!
Whichever way it goes, it is little wonder you feel as if you are on the verge of a nervous breakdown! You are in a dark place at the moment. It will only get worse if you do not get some help for yourself; and unless you help yourself now, you will be less and less effective in helping your mother in the future. I have been in a similar place regarding my husband, although I admit not quite to the extent you are experiencing.
I would suggest a double-pronged approach which may seem daunting, but you cannot make you better without dealing with your mother and her health issues simultaneously.
1. If you do not have an understanding GP to talk to, find one. Make an appointment for an extended consultation and lay all your cards on the table. If the recommendation is for you to take medication for depression and/or anxiety, even just for the short-term, do it. It is not habit forming, it does not even chill you out, it simply corrects a chemical imbalance in your system. They will not make all your symptoms disappear, but they will lessen greatly, and may well disappear entirely if you can resolve the root cause: your mother's never-ending behavioural issues. Be aware that those medications can take anywhere from a few weeks to a couple of weeks to be completely effective. One day you will discover you have been coping much better than you did before, you just will not know exactly when it happened.
2. It sounds like your mother is being treated in an ad hoc manner, ie sees one doctor for one thing, another doctor for something else. This is a big ask of you, but I think you and your mother would benefit from re-assessment by a medical professional who looks at the overall situation, not just symptoms for one complaint. I do no know how the health system in the US works, but here in Australia your mother would be sent for an Aged Care Assessment. The results of that assessment would guide you in your next steps. It might be in-home care, it might be hospitalisation in the short term, it might be permanent care in a nursing home, it might be something in between. The less compliant your mother is in such an assessment, the more likely you are to get assistance. I feel sure there would be something similar to that assessment in your country.
I do not envy you your catch-22 situation, but the circuit must be broken. You are the only one who can do that. I wish you strength and determination to improve your unenviable situation.
You need to consider setting boundaries, right now. Draw some lines and do now let her bully you anymore. If she won't do X, Y and Z without you present, well, in most instances, so be it.
Long term, she needs to be placed somewhere. ASAP. She doesn't have to like it and most likely will give you a bunch of crap about it, but calmly stand your ground, just like with setting boundaries.
I think it best for you to start reclaiming your life. Today. Your husband and children deserve more of you. And you deserve more of yourself as well.
Best of luck!
She needs to bathe, eat, sleep. She won't do any of these things without you present to cajole her into it.
But even with you present, she's still not complying with essential routines. Have you tried stepping away from the situation for long enough to force the issue? Your profile states that you've been her primary caregiver for twenty years, and it's going to be very difficult and stressful for you to attempt change; but for your sake and hers it has to happen - don't you think? What have you tried so far?
Understandable for many reasons that you’re a frayed nerve.
If Mom “refuses” and actually does have her “wits about her”, why is your life with her based on her 100% refusal and your 100% compliance??
Since she is at present in total control, it will be up to you to begin to vary the dynamic to bring your life together into another level of balance. You will need to plan some of the terms of her care to reflect your needs as well as only hers.
She will yell, blame, accuse, cry, stall, and pull out all the stops. With love for her, you will quietly and lovingly stand firm. If her cognitive resources are intact, she will ultimately realize that she must comply with some or most or all of your changes, or she will be the loser.
The advantages for her? She may well comply with someone else to take her meds, eat, bathe, and one by one, over time do some or most of the other things she needs to do TO FUNCTION AT HER BEST and at the same time, give you the opportunity to breathe, take care of your OTHER family members, and enjoy life a bit.
Keep in mind that your responsibility is to provide safety and security, and not to cater to her every need, and also that YOU have reasonable and appropriate needs as well.
Don’t become enmeshed in her negativity. As long as you are sure she has safe in her quarters, LEAVE HER when she lets loose. By giving her a constant audience you encourage her perception that you acquiesce to her dependence on you.
Just an additional thought- be aware that her behavior may indicate that she may be at the beginning of cognitive loss. Not wearing a hearing aid, claiming her doctors are attempting to hurt her, severe anxiety about doing normal life activities without you present? Objectively, is cognitive loss part of her pattern too?
I wish I had done that. I pushed myself to the point of burning out. It’s not worth it. It really isn’t.
Go and look at facilities. Choose the one that is best. Move forward with placing her. Then you can visit as her daughter instead of a caregiver. They will care for her. You can be her strongest advocate. She will see that you still care for her very much.
Best wishes to you and your family. Hugs!