I’m so unbelievably unhappy. Advice?

Option A: Put her in a good senior care facility.

Option B: If A is not an option due to cost or lack of quality home you can afford, then I suggest you take some long staycations in an Airbnb and replace yourself with a live-in caregiver every two months or so. (This is what I do).

Option C: Some homes have respite services (much like those for pets). Periodically put her in one for a few weeks.

Option D: If you don't have the money for either of those options then I suggest talking to all the family and friends you have about covering for you for a period time and going with Option B. You can find very affordable Airbnbs; even if it's just three nights and four days, you can have time for yourself. It's Self Care; You absolutely need to do that.

[For the record, I'm in a similar situation. I have moved into my father's home to care for him. My father cannot move at all (dead weight) and refuses to get into the Hoyer lift (I manage a team of caregivers who lift him with a belt; eventually someone quits and I go on to find another).]

Remember: Self Care is a must to survive this.

Peace.

It sounds familiar. It's quite common that family members "disappear" when an elderly family member needs aging-care. They dump all that responsibility on the one who initially volunteers. The job of a caregiver is though, time consuming and around the clock. It's a task for healthcare professionals, not amateurs. Caring for the elderly is better done in specialized agencies. Family members are inadequate for this work because the have no expertise and they can't be objective because of being emotionally involved. I realize that when money resources aren't sufficient, the family is the last resort.

This is why its time to move her in a home. You need to save yourself, your marriage, your relationships. Also get counseling for yourself. Bless you.

Juliet1061, your story sounds almost exactly like mine, even the time that your mother has been living with you, My mom has been with me five years as well and although I haven’t had the courage to make a post like you did, I feel the SAME EXACT WAY many (most) days & it is refreshing to hear someone tell the truth. Your post also helped me to not feel so alone or guilty, which seem to be my two ‘favorite’ emotions for the last couple of years. I can’t leave the house without her with me, but it’s such a hassle to take her anywhere as she has difficulty doing everything from walking without falling, to sitting without complaining! 🤯 Like you I’ve also had to say goodbye to a promising career that kept me financially stable most of my life, no relationships, dating is a distant memory, not many friends since I can’t leave and when they come to my house my mothers glued by my side. If I ask her for privacy she will not only make me feel guilty but whoever I have at the home she will also lay on the Italian/Irish-Catholic-Mother guilt(I know all mothers can do this, but this particular group of ladies has really perfected it to an art! Lol) to my guests who inevitably feel bad and say ( loud enough for her to hear 🤬) “no no, stay it’s OK”! I’m sure many of you have gone through this infuriating circumstance where once again, you are left in the position of either looking like a monster who has to practically physically force your mother out of the room, or letting her stay there while you try to complain about your lack of a sex life in a subdued tone that is too low for her hearing aids to pick up on!
But I digress 😮‍💨 I’ve told myself time and time again this is not really my mom and that her Alzheimer’s is causing her to act this way , but usually that only helps for so long and I end up getting angry, frustrated, sharp-tongued- followed of coourse by GUILTY (or,on occasion, DRUNK- if it’s been a particularly horrific day! Lol) I know it is partly my fault, since I should not have let it get this far , but just like many parents are not trained on how to take care of children most of us were never trained on how to deal with this! Also, it doesn’t help that ever since my brother and I were kids she has told us never to put her in a “home”, right before she ‘d send us off to a two month long ‘summer camp’ that we would beg not to have to go to. lol
My brother/family doesn’t help at all, and while I am not ready to place her in a full-time living facility, I HAVE made a promise to myself that she will start going to some type of Senior ‘daycare’ at least three to four times a week. I’m hoping that people on this site can give me advice on cost, since she does get Social Security but it is a limited amount so I’m sure we will need to use her Medicare( if that’s even an option for senior care?) since I am not working and I’ve gone through most of my savings taking care of her and staying home from work the past few years.
Sorry About that rant everyone, although that was a lot more cathartic than any yoga or meditation session I’ve done this month! 😏 I do want to thank you Juliet1061 - as well as those of you who replied, many of whom made me literally laugh out loud which I try to do as often as possible to keep me sane while going through this burn out!

I have been reading through the forum all day and feel inclined to add to the support being given. I began living with my parents last year. My dad passed and I remain in the home ... taking care of my mom, sort of. She won't allow me to do much, rather she tries to do what she thinks is right and I end up following around behind her picking up pieces and putting things back in place (figuratively...sometimes, literally)
I resigned from my dream position that I've worked very hard to achieve. Financially, I am able to let it go. I do worry that I will lose relevance so, I am currently looking for something in my field that is part time.
I love mom. I would do anything for her. She isn't the same person and my dad didn't do anything to circumvent what he saw happening because he was gravely ill. Needless to say, I'm tired. She's tired and her perspective is the one I worry about the most. She won't go to counseling. I'm waiting on feedback from a couple of her healthcare professionals and hoping they recommend counseling for her and that she listens to them. I am in counseling as I already know that as a practitioner, I need to observe the same advice I give clients...it has evolved into a different type of counseling for me and I do have compassion fatigue from caring for my mom. I'm glad that I already knew about this and knew how to address it. There is support being given by extended family, but the day to day is something noone can really understand unless they live it for a period of time longer than a few days. Nevertheless, I appreciate the support. Be well.

Thank you for your honesty! My mother is still on her own but the day is nearing where I will have to set up and figure out living arrangements and I honestly don’t feel up to it. I’ve really never liked my mom and have always felt ashamed of feeling that way. Your honesty makes me not feel alone. Thank you

It sounds like you're suffering from severe burnout and exhaustion. And just from skimming this thread, I'm seeing a lot of helpful advice about what to do. The problem when you are burned out and exhausted is you don't have the energy to do the endless list of what's already on your plate, let alone do the extra things people recommend. I could give you a list of things to investigate or plan, places or people to call, doctors to take her to, etc. but, quite frankly, I always felt that advice made me feel even worse. More trapped. More hopeless. More helpless.

What I will say is this (and when you feel this bad sometimes this doesn't even help): you're not alone. It is, without question, the hardest work I've ever done and the most underappreciated, overwhelming and invisible. People in your life often have NO clue how hard it is and how much it invades every pore of your being. And it is so damn exhausting.

So I will keep my advice here short and to the point. Two things and only two. First, and most important, see if you can find any kind of therapist, a support group in your area to go and vent even if it's once a month (a lot of hospitals have Alzheimer's support groups, Assisted Living facilities often have them too for families). They are usually free. YOUR life is worthy of care. YOUR life is not as important as your mother's, it's MORE important. We forget this very quickly when we care for elderly parents. Our lives are more important than theirs because it is YOUR life. The life you have is the only one you get. I will fight this point all day long and don't care who thinks I'm selfish, etc. It's fact. Yes, your Mom needs help 24/7 but you are not a non-entity. You have a valuable life.

Second, if your state has a department on aging, call them. A lot of states actually pay family caregivers caring for loved ones. The work you are doing FOR FREE is saving the state a ton of money because you're not going on Medicaid. Many states have programs to give you a bit of money to help you in this effort.


Those two things may sound overwhelming already. But you are worth it. You are as valuable a person as the one you're caring for. Please make that your mantra. You are not just a servant.

My parents moved in with me 4 years ago, my father has Dementia and my mother has Bipolar. I got them medicated to manage their condition, they are happy and getting all their needs met. They had a little money, I build an attachment to my house with bathroom where they live. I am using their money to provide private Aide daily. I told my brother and sister there might not be any money left, I am using it to care for them. My siblings visit 1-2 times yearly. I have contacted a elder care lawyer about getting Medicaid when the money is gone. It seems like you have reached the point to make alternative arrangements. You have done all you can. If she has to go to a NH that's what needs to happen. You can visit her as much as you want there. Even though I have help, it has been very stressful for me and my family. I can't imagine what I would have done if I didn't have help. Good luck.

Senior residential care was a great option for my mother with dementia. They may not have all the fancy entertainment offered by the bigger corporation facilities but the cost was very affordable and the care is more personal with a very low ratio of residents per care giver. If your mother's finances is an issue you might consider this option.

You do not mention whether or not your mother could go to assisted living or find other housing to meet her needs.

I imagine many of the responses here are telling you to make other living arrangements for her.

What I do not understand is why you have been doing this for five years.
It sounds like you are not able to set personal boundaries.
This situation needs to change ASAP. You must do this.
Are you the POA ? If you do not have legal authority to make decisions - and your mother does - you need to deal with this situation accordingly.

First, you must believe you deserve a life of your own.
If you feel obligated to continue as you are doing, everyone will suffer.

Get professional therapy / support you need to make the necessary decisions if you feel you cannot do this on your own. I question / wonder how your husband responds to this situation, seeing you crumble or what sounds like close to a breakdown. How does he support YOU ? I wonder what the relationship is between you, your mom, your husband and you, your husband and your mother, and as a unit. We don't need to know. However, this (sounds to me like it) is dysfunctional and you must change for your own survival. Your mother needs to be moved out.

Gena Galenski / Touch Matters

You are extremely burnt out with caring. Since you get no breaks, it isn't a surprise that your feel animosity towards your mother - and probably towards other family members as well. If adult day care is not proving you with enough time off, it may be a sign that your mom actually needs long term care, Ask at the day program if there is a social worker you can talk to about helping find your mom a place.

Juliet1061: You CANNOT continue on in this dynamic. To have given up a paying job is not advisable for anyone as it relates to thinking that you have to care for your parent 24/7 since other options exist. You should locate facility living for your mother. Perhaps you can seek employment after that is accomplished. You must change this now for your physical and mental health.

Look for placement options. It may take aw while to find a suitable opening, but starting the process will help buoy your spirits. If she has any assets, use those toward the placement facility. If she has no assets, she might qualify for Medicaid. If you (or your husband) need to chip in a bit more money for her care, it will be well worth the cost for your sanity and physical health.

Time to place her, for her sake and yours.
She is at great risk for elder abuse and you won't realize that you
are doing it because you are angry, resentful, and actually say you
cannot stand anything about her.
This is toxic and she may already be suffering as much as you are
but you will be unable to see it.

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.

I appreciate your honesty & totally understand where you are coming from! You have given/are giving a valiant effort to try to selflessly care for her. Put more space betw you & her? Make sure you have time away in the course of a day? Can you have a Caregiver come in couple days a week & tell your Mom you are off the clock & need to have some time for yourself, for you & your Hubs? Can you enforce that she goes off to local seniors get togethers?

If mom is over 62 who is getting her SS? You need to pay yourself as assets/ income allow. If she has only SS and no other assets she may qualify for Medicaid and have care in a facility paid for by them. You are not alone in this or obligated to continue her care.

It is time for long term care. This is unhealthy for both of you..

Place her in long term care. Reclaim your life.

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.

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.

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.

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.

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

Southiebelle, You described my mother. She died in 2016 and I still have flashbacks of her calling my name constantly. I was ready to change my name by the time she died.

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.

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.

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.

I know that you meant that you're "so unbelievably unhappy" in your post. It sounds to me that you have long ago reached your breaking point, and you know that that means that things now have to change.
You CANNOT, and I'll say it again, you CANNOT continue on with the way things are. It's time now to do not only what is best for your mom but what is best for you as well. And that just may mean that mom will have to be placed in the appropriate facility. And that's ok. You tried your best to care for her in your home, and now it's time for someone more qualified to take over her care so you can get back to just being her daughter.
You know that if your mom was in her right mind that she would never want you jeopardizing your physical and mental health because of her. So please start the process of looking for a memory care facility for her. And if needed she can apply for Medicaid as her care is her financial responsibility not yours.
Please take care of yourself, before you will be needing someone to look after you.