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My mom has moderate to severe dementia. I have two siblings....neither of them have had hardly anything to do with our mom for decades. I am the youngest of all of us. For the past three months I have been staying with mom 24/7 every day. No break at all. Because she had three falls within a short amount of time within one another, I have not had a full night's sleep since being here. Every noise I here, I fear it is her, getting up without calling me. I get out of bed very early (4:30-5:30 a.m.) just to get coffee in me and be awake if/when she gets up. She forgets to call me when she gets up, so I walk/pace back and forth to her room to peek in and make sure she is still asleep/is not getting up. This is my life now.


She doesn't even know who I am most of the time, and then when she does "remember" me, she says that she and my (deceased) dad only wanted two kids and when she (as she put it.........) made the "worst mistake of her life and got careless and had me" they gave me up for adoption. This never happened. I deal with confusion/frustration/agony/depression/sadness everyday. Throughout the years I have always been there for my mom. I have for years and years called her everyday, sometimes multiple times each day; I have bought her things she said she needed; I even bought things and sold things for her on Ebay helping make money for her, knowing she was much more well off than I have been. Since I have been here, for weeks she called me by my sister's name and then when she finally "knew" who I was, all of this "unwanted baby" stuff comes up. She even said earlier today, "Do you see the people who adopted you very often?", right after I got her out of bed, to the toilet, and seated in the living room, with her breakfast. Any advice?

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Two out of three kids in the family have had nothing to do with mom for decades. So, I'm going to go out on a limb here and say there's a reason why they don't see or speak to her and the reason is her.
Are you staying in her house taking care of her because you've fallen on hard times financially and can't afford to live somewhere else? So many times that's the reason why a person is caring for a parent like yours. If you're financially stable enough to live elsewhere, then put her in a nursing home and be done with it. It will be the best thing you ever did for yourself.
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unwantedone60 Dec 28, 2020
She lives in a small town....I was living in a larger city where I was working self-employed for decades. I buy and resale for a living, so the larger city has lots of estate/yard sales/thrift stores where I was buying my inventory. I wasn't making a fortune, but now I am not making anything. Brought quite a bit of my inventory here to sell online. I just don't have the energy level and my mind stays fogged and I cannot take care of her full time plus do the online stuff unfortunately. Maybe later if acceptance of my situation sets in; however, still the broken sleep and all of the stress associated with this situation makes me wonder. Fortunately, I have some savings built up. I do worry if this continues for years and years, with my savings depleted, if I will be able to support myself later on with rent getting higher and higher, cost of living and so forth....I am sure you understand.
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Social services policy (I think this is pretty much universal nowadays, across all countries) is to keep people at home. There are sound reasons for this, not only money and respect for choice but also that uprooting elders does indeed tend not to be good for them.

Having said that, the social worker you spoke to seems not quite to have thought the situation through. Present it again, only this time stress that your presence and your support for your mother must be temporary - put a date on it, in fact, which will be good for you too.

Then, so, in x weeks' time, Mrs UnwantedOne will be an elder with dementia at risk of falls living alone and you should see an abrupt change of mind from social services about the support plan for her. The risk:benefit ratio will rebalance dramatically once you're not a factor.

You do have to do this. You cannot stay indefinitely. You cannot stop your mother aging, falling, or progressing in her dementia - not even if you could stay awake 24/7 and hang over her in person. And you cannot continue to do what you are doing alone: you will break, and then she will not even have your advocacy and she really will be on her own.
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unwantedone60 Dec 29, 2020
Thank you again, Countrymouse. I did find out also that social services does not get anyone to come and stay with her. (Oh....not sure if it is clear or not, but my ID applies to me...as I feel like an "unwantedone" since what she has said to me, not once or twice...she has brought it up numerous times. I am 60, she just turned 86.) I have read that caregivers face a greater risk of developing dementia moreso than non-caregivers. I will contact the social worker as soon as the vaccine gets distributed to the local nursing homes here and the outbreaks are no more.
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If, and only if you are still wanting to continue caring for your mom 24/7, then you are going to have to start taking care of yourself, by making sure you are getting away throughout the week, to do things that you enjoy. It doesn't have to be big things, just like going for a walk outside, meeting friends for lunch or supper, going to church, or going shopping. By taking these little times away, it will help you to rejuvenate your soul, and help you to continue on the journey. However, please know that things will only continue to get worse, and there may come a time when placing mom in a facility will be in hers and yours best interest. So I would probably start looking now, so when that time comes, you will be prepared. Best wishes.
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unwantedone60 Dec 28, 2020
Been looking into that...In the small town we are in, unfortunately every single facility has covid outbreaks.
Also, earlier this year, her medicaid form got denied. Between her pension/social security, as well as cash value in an insurance policy, she exceeded the limit of income/assets...not all that much...but did exceed it.
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Place her in a Memory Care Assisted Living residence as soon as humanly possible. Otherwise YOU may pass away before SHE does.

Dementia reaches a point where most of us cannot care for our loved one at home anymore. I think you're there, don't you?

Good luck!
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Unwanted60,

What about the possibility of moving your mother to Richmond and into a memory care facility close to your home?

I think it would be worth it to talk to an elder care attorney who can advise you the best way to get your mom approved for Medicaid. A good attorney can get her qualified. There are things like a Miller trust, and other ways to work around her income.

Maybe the sister who has been coming around recently would be willing to assist in the move?

It just doesn't seem sustainable for you to stay in the current situation. You are already burned out after 3 months (I don't blame you), so this is just going to get worse. You need to get back to your life in Richmond ASAP, to your work, and to your significant other.

Please keep us posted. You can change the situation, and we here on the forum can support you along the way.
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unwantedone60 Dec 29, 2020
Thank you so much. I will look into finding an attorney to help with this. I did try to put her in a home for 3-4 days for a short while back. Unfortunately, the nursing home here has an outbreak of Covid, and I have found out the only other ones fairly close have cases as well. I am not even comfortable with her going to any of these places until the vaccine has been distributed to all of them. Also, I love cooking/baking for Mom. I sit at the kitchen table doing most everything to prepare the meals so I can keep an eye on her. I even have "hidden" vegetables she never cared for. I chop spinach, carrots, celery, green peppers, etc. up finely and make casseroles with them. She seems to love what I have fixed for her. She has had a very good appetite since I have been here. (She had lost some weight and has gained it plus a few more pounds since I got here. I, on the other hand, weighed 155 pounds and have lost 30 pounds--I now weigh 125 pounds. She eats better than I do, as I don't have much appetite from stress and because I move around all the time checking on her, doing things for her, cleaning, etc.) I do know I cannot go on like I am much longer and be able to care for her if I get sick/am not here.
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It sounds like you are providing wonderful care of your Mother, but maybe at the expense of your own.

What's that saying? Setting yourself on fire to warm someone else.

It seems to be you are a natural fixer & have indeed fixed things after the hospital stay. But fixing old age or dementia is just not possible. Many carers die trying.

So. I agree with the recent posts. Go home.

These are the choices I see;
1. Go home.
Place Mother in a facility local to your home. Continue to be her advocate & emotional support. Be her loving daughter who visits.

2. Continue as you are. Risking your health & relationship. Let the future force the direction.

What the future brings will depend on who breaks first. If Mother, she will go from hospital to rehab into care. If you, your Mother will be moved into care.

So I suppose it is about whether you can or will take charge to plan the direction - or let fate decide.

I am a planner. But my relatives live in denial & will not plan. So they have (by default) chosen fate.

Won (I abrieviated your name 😃), what would you LIKE to be the outcome?
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unwantedone60 Dec 30, 2020
You are right....(and I never heard the "setting yourself on fire to warm someone else" quote. It is very fitting.)
I have to get her Medicaid app sent in. I am not sure if I said this (I sure don't want to read through all the postings I have written :) but it was denied earlier this year....the social services man said it would be a good idea to see if she qualified for the Medicaid Waiver in our state, which she does...as she met all the criteria necessary about the daily living things she is unable to do by herself. However, there is cash value in an insurance policy she has had for years designed to take care of her funeral expenses. The CV is as high as the face amount. I was told by the woman with Medicaid/social services dept who handled her app that she could only use $400 of this toward her funeral expenses. Nothing was said by her that Medicaid would take it all....which would be fine with me and I could figure out how to pay the remainder she would need for final expenses just to get her app approved and her application accepted. That is the main holdup to get her in, then with covid, another thing. She has lived in this city, attended same church for years here and her friends are here. Not to be overly morbid, but I know I could not afford to pay for her to be brought back here for her "final arrangements" as well as her pre-planned funeral she signed a contract with at the funeral home, which she did not pay for at the time. She told me it would be "up to someone else to deal with". She was right about that.
And thank you for the "won" abbreviation.......very nice and I would like to think my choices (or poor choices) won't end up being "lost".
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I’d say that you and mother are both having trouble ‘maintaining your sanity’. Your mother may be going back in time and remembering that the pregnancy was in fact accidental, and she was upset about it at the time – not unusual in the days before good contraception. An unpleasant and pointless memory to resurface, but there could be worse - you turned out fine. Your sanity problem is for creating the feeling in yourself and the rest of the family that you are going to sacrifice yourself in this way, permanently.

There are small things that might help, eg a pressure mat beside her bed that would let you know if she does actually get out of bed. But the real issue is to face the fact that this is not a viable situation, and start looking at the alternatives. Unfortunately, putting her on Ebay isn’t an answer!
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unwantedone60 Dec 28, 2020
Selling for her on Ebay is over now......I did that for several years after she was unable to do it for herself. When her dementia got worse and worse I started selling things (mainly kids books/novels) she had bought just to try and get back some of the money she had spent on it. I made, some weeks, more money for her than myself. (It takes alot of time going through every single page, checking for writing, stains, dogears and having to identify every tiny thing.
I am getting somewhat numb as far as her not knowing I am a daughter she raised/didn't give away.
I have thought about one of those pads but they look like heating pads...I am paranoid and worry about anything electrical being under her body.
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Hello!
First off, you are a saint for having the heart and strength to care for your mother. You have honorable intentions and it speaks to your character. People like you ARE wanted and needed :) Never forget that!

We take on caring for a parent because its the right thing to do and we have the very best intentions, but zero heads up on how crazy it can be and the full spectrum of emotions that come along with it.

The physical and mental demands are rarely understood unless you have experienced them first hand. You are trying to learn and adapt to her physical needs, while being a target for her emotional turmoil.
I understand what it feels like to sacrifice everything to help a dependent loved one in need and then be surprised by the unresolved emotions at come along with everything else. You are trying and doing the best you can, inspired by the kindness and love you want to show to your mom.

I commend you for not taking the easy route of putting your mom in a home without even trying. You are braving the storm and giving her more love than she would get in a home. Be proud of how awesome you are and for having the strength you have to take the bulls by the horn (for now). Remember to value your boundaries as well. Only you can decide when enough effort is enough.... financially as well. Never think for one second that you are a failure if you decide that a home or other living arrangement would be best for both of you.

I am walking in your shoes and have yet to find a moment to myself or even leave the house for more than an hour to get groceries in the last 3 months, but I make sure my mom doesnt skip a beat for what she needs. I am working through childhood wounds of her never caring for me as a child, but here I am. 24/7 ,so I understand the resentment that can be felt from time to time.

I understand how hard it is and sanity checks are far and few between. I understand the depressed state you are in, I understand that it takes time to find the right care and still hold out hope for respite care someday. I hope your sisters step up more and dont be afraid to have them provide a respite for you.

A baby monitor in the main rooms, helps me to keep a watchful eye, listen and talk to my mom as needed. Even though her words about your conception may be exaggerated due to her mental state, it still hurts. Try not to take it personally and know that those are her demons to deal with, not yours. This experience will make you more resilient, patient and perhaps assertive.

You are not alone. You are a beautiful person. You are doing the right thing. Cherish the small victories and moments of clarity. Remember that this too shall pass. Set boundaries and know when its time to protect "you" and put yourself first...until then, find moments of light and bask in them.

Best wishes as you navigate this part of your journey :)
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unwantedone60 Dec 29, 2020
Thank you so much for your kind reply and for encouraging me. I really appreciate it. I wish you the best of luck in your own caretaking. I don't feel "wonderful, beautiful" at all. I feel exhausted/stressed and even Mom tells me "you look tired". You are a wonderful, beautiful person as well and thank you again for your post.
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You can't reasonably be responsible for a dementia patient 24/7 and maintain your own physical and mental health (not to mention financially ruining yourself). You'll either need to hire outside aides or put her in a facility. She is only going to get worse from here on.
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unwantedone60 Dec 28, 2020
Thank you. I do know all you described will happen or is already happening to me. I feel numb and not "human" anymore.
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Unwantedone60, at three months of providing full-time care for your mom with "moderate to severe dementia," you are still pretty early on this difficult journey with her and yet, as you clearly know now, it is both mentally and physically exhausting. The three most practical suggestions that quickly come to mind are:
1) Education -- I used "The 36-Hour Day" book as my almost daily, as-needed bible (but there are good resources, too);
2) Support -- I got mine from my wife, from three Alzheimer's support groups (that also provided education), and from one sibling (and almost none from six other siblings);
3) Baby Monitors -- I actually used 3 of these, 2 audio and one video/audio, which allowed me to get more sleep than I otherwise would have, but still not nearly enough.

One other quick thought that might help you -- during the five years that I was my dad's primary caregiver, he mostly thought I was his dad, but sometimes I was one of his brothers, and, almost magically, once in a great while I was his son. During the first few months of this confusing journey, I usually tried to explain to him who I was (often with old pictures), until I finally realized it was much better for his contentment to just go along with whatever "memory" he was having at the moment.

Kudos to you for providing your mom's care. Best wishes for both of you on this difficult journey.
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unwantedone60 Dec 28, 2020
thank you for your reply and suggestions. I have pulled out old pictures myself, not knowing if they would do more harm than good. And my sister sibling, who showed up and has been here several times in the past two months, (when I tried to convince her that Mom left her and my brother everything in her will and one small item to me....just to let her know Mom did/does care about her)...all of a sudden she is coming here. (Let me make it clear...I don't care about my mom's stuff....I don't need anything...just want her love and for her to live as long a life as possible....still, I have to admit...it hurts to know I have been the only one of us in her life for decades and this is how things are. Still...it is her wishes, and she will and deserves to have things left the way she wants.
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