I’m so unbelievably unhappy. Advice?

Okay so what upsets me greatly is to read stories like yours where you're at the end of your rope, hanging on for dear life, literally, miserable beyond belief because you've allowed your mother with dementia to destroy your life for the past 5 years. You've given up YOUR life, your job, your mental health, everything, in favor of caring for your mother which is noble........it truly is. But now you're burned out and you have what's known as compassion fatigue:

Compassion fatigue is a condition characterized by emotional and physical exhaustion leading to a diminished ability to empathize or feel compassion for others, often described as the negative cost of caring.[1] It is sometimes referred to as secondary traumatic stress (STS).[1] According to the Professional Quality of Life Scale, burnout and STS are interwoven elements of compassion fatigue.

Google it; there is a ton of info about CF and it's no joke.

Please realize that there are TWO lives here that matter, not just your mother's life, but YOUR LIFE too, for godsake! You've done enough. 5 years is plenty of time to have devoted to caring for a woman with dementia which is going to continue to worsen and reach a point where she may start defecating on the floor. Then what? Then you lose your mind and get committed to the psych ward for evaluation? No joke! Stop this insanity NOW and get mother placed!

If she has $$$, off to Memory Care she goes. My mother is 95 with advanced dementia & lives in MC AL and let me tell you something, her care there is phenomenal. Just yesterday she was screaming bloody murder & shaking all over wanting to leave to go see mama & papa who have been dead since 1980 and 1942 respectively. Within 30 minutes, her hospice nurse called her NP and they upped her Ativan to every 6 hours. It was on hand in the MC, and a refill was called in to the pharmacy which delivers straight TO the MC. This is something people don't even stop to realize: medical help is on hand 24/7 in managed care. Nobody is burned out or suffering compassion fatigue b/c they're PAID to care for these elders & they work in 24/7 shifts to do so! The elders are catered to, looked after and cared for no matter HOW they are acting up! And WE do not have to pull OUR hair out listening to or watching the behavior and stressing out over it. Had she been in MY home freaking out, how long would it have taken ME to resolve her meltdown? Days at the very least. Phone calls that would go unanswered. "Covid" excuses from everyone that would prevent her from being seen. And on and on. Instead, she's dealt with ON THE SPOT by nurses and caregivers and finds relief from what ails her, EVERY TIME.

Place mom. Take your life back. Get her in MC if she has $$, and into a Skilled Nursing Facility with Medicaid if she does not. You can hire someone to walk you thru the app process and check on the status OF it FOR you with Medicaid.

Just do it.

You deserve a life too, why wouldn't you?

Best of luck.

Big big hugs Juliet. You are experiencing a florid case of caregiver burnout. Other forum members may roll their eyes and think I'm stating the blindingly obvious, but I don't mind looking silly - you wouldn't necessarily know there is such a thing if you don't happen to have heard of it. Have you?

She's under your nose every day. The sound of her voice. The sight of her back. The smell of her preferred foods (it was golden syrup oatmeal for me). The way she peers at print when she reads. That dainty (or even not so dainty!) little cough/snuffle. The tissues the tissues the tissues...

It would be best not to keep any fire axes in the house, let's agree, as a start.

My first advice would be - get at least one and preferably two weeks off by finding a respite care place for her. You need this time a) to stop shaking; b) to remember you haven't breathed in properly in 5 years; and c) to have a think.

It would be really helpful later on to know why she came to live with you and what the plan (if any) was, but first things first. You are not alone. You do love your mother. That love will return - it's the trap that's intolerable, not her.

I just placed my 85 yr old mother in a nursing home after years of trying to do and be everything for her. My 45 yr old son ,who has Parkinson's, helped the last 3 years. I won't go into horror stories because all of you caring people out there know them all. It became time for a nursing home when she ignored home health, me and rebelled constantly . After the 8th trip to emergency and 4 stints in hospital in the last 3 years it was time. She was unhappy, we were beyond burnout and constant stress on family relations she and I together made the decision. In Dec 2021 she went to emergency ,again, with cellulitis. She wanted to go to the home she had volunteered in years ago. She went straight from hospital to home. New owners. Super clean! Friendly and attentive staff. Activities to keep averyone engaged. We wanted a roommate so she could have a friend. They matched my mom with a perfect roommate! When I go they are laughing and talking and are planning which snacks they can buy to fill their little fridge and pantry. This small facility ,10 minutes from my home, is accessible all the time and has an open door policy to administrator and so on. Mom is so HAPPY! She has even started playing piano for them! She has early dementia and was church pianist for 65 years. I can concentrate on repairing our relationship and do not have to be her caregiver anymore. The business Dept at home worked me through every step of her care and finances. This place also had a memory Care unit when time comes so she never has to leave. Talk to homes and social workers and good luck ! There are great places out there that do not cost an arm and a leg.

This is why so many people need to find this website before they make that ill-fated decision.

You have reach your own human limitation. It is time for you to let your Mom know that she has to go to in-facility care. If she cannot afford that you will need to apply for medicaid for her. There is no shame in knowing your limitations. Looking on the bright side of all of this, your sacrifice has given your Mom in home care longer than man, probably most elders ever get that.
This is now in your hands. No one can make the decision for you. Your and your husband need not to pay out any of the funds YOU YOURSELVES WILL NEED for your own future help and care.
Ask at the day care center for guidance in finding a social worker. If they know none then see your Mom's doctor and tell him or her you have reached your limitations and now Mom must go into care. Do not argue the subject. Don't accept the platitudes of they will find you more help, and etc. Stand strong in your own behalf.
Wishing you the best.

It only took about 6 weeks of my mother with dementia living with me, before I started to break down with the stress.

You have done all you can. You have given and sacrificed, until there is nothing left of you.

What is your mother’s financial situation? Let us know, and folks here can help you take baby steps to making a change that will save YOU.

5-day daycare is a start. There are lots of people here who have been in your place. All is not lost. We care.

It's good to re-assess. Not just good, but essential.

1. How do your feel about this caregiving role?

Yep, I think you summed it up! Burnout, compassion fatigue & had enough ++. OK

2. How much of a caregiving role would suit you ALL - not just Mom? Suit YOU, your DH, finances & jobs better?
a) Would 5 daycare days be worth trying?
b) Is immediate respite care for 2 weeks required?
c) Are you ready to let go & place Mom into care accommodation?

Once you have a decision, it's time to act. Gather your energy & put it towards research, finding folk to help & then bring forward this change.

Are there any "Buts..?".
What are they?

Common ones are "But she doesn't want to go, but she won't go, but I promised her.., but it's my duty.., but I need to be a good daughter..".

I don't make light of those big hurdles, but they are hudles - can be jumped over (maybe with a little help). They do not need to be unscaleable castle walls.

You will find you DO have the strength & power to change things. Like Dorothy in the Wizard of Oz, you had it all along, just didn't know it. 👠👠

Taking full-time care of a disabled elderly person in not a job for amateurs. They are better off in a facility.

Place her in a nice LTC facility that excepts Medicaid. If she has any money, even for a month, use it. If not find a place and start the application for Medicaid. The place you pick maybe able to help you get started. For me, Mom had 2 months of private pay. I started the Medicaid application in April, she was placed May 1st. Private paid May and June and July Medicaid started.

You are burned out. Its time to place her and no guilt.

Juliet, I'm in the same boat and feel the same way. I wish I had some wonderful advice for you but it's either a facility or just gut it out until the end. I've tried to avoid the facility for various reasons but I don't know how much longer I go on. My mother is obsessed with me, calling my name constantly even when I'm sitting 2 feet away from her. She has to have help with everything, even flushing the toilet, which she visits every 2 hours around the clock which in turn deprives me of sleep. She complains and demands and whines and is dramatic when she doesn't get her way which is to lie in bed all day getting the sleep that she missed while getting up and down all night. I have no job, no friends, no life outside of her. I have 2 sitters who have lately been sick or out of town and I've spent 2 weeks at a time not being able to even drive out of the driveway. If it weren't for Amazon deliveries, I'd be in bad shape. My face has aged 10 years. My mother is thrilled that I no longer work even though when I was growing up, NOTHING got in the way of her job. She's sitting 3 feet away from me right now screaming my name because I'm typing this and not answering her. My life is a nightmare.