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My mother has chronic pain and dementia. I'm so tired of hearing her cry multiple times a day, nothing I do helps or helps for five minutes. Today she wanted to push on her back and legs and I just thought 'what's the point'. It's only gonna help while I'm doing it and I can't do it for more than a couple minutes. I've been pushing on her legs for thirty years, I grew up pushing on her legs. Clearly, it hasn't made a lasting difference and I don't want to anymore. I don't want to listen to her crying, in fact, I don't really respond to it much anymore. I'll sit in the same room while she's crying and not say anything.


I know once she's dead I will look back at this and feel like sh*t, but I don't know what to do anymore. I've done lots of things in the past but I'm tired of it all, the crying, the pain, watching this for my whole life, doctor appointments, her frequent irritation and depression, her inability to do things for herself or to try. She prefers to place that on me. She tries to give me messages to tell people after she's dead. That made me angry, there is no reason she can't tell them herself now. She can write a letter or make a phone call, she just finds excuses not to.


I don't want to be angry or frustrated at her while she's alive so instead I stuff these emotions down. Given her habit of crying five times a day, that doesn't seem to be a successful way of handling this either. If I give her comfort during it, she starts asking all these questions of why God is punishing her or why there is something about that makes people not want to help her. I don't have these answers.....

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Sometimes it's not about what they WANT, it's about what they NEED. And it sounds like her needs far exceed the ability of one person to take care of. And, she treats you like that on top of it! Draw the line, set the boundaries and get on with improving your own life. (easier said then done, I get that). And it sounds like her behavior is not just dementia related-this has been a pattern since you were a kid? Enough is enough. And her refusing outside help or a facility? It's really not her decision to make anymore. There is help out there. I hope you can figure out a way to take care of yourself. You certainly deserve to be happy.
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Reply to lynnm12
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Ah--you made THE PROMISE. "Mom, I will never put you in a home".

How many of us on these boards did the same thing, raise your hand? (I actually DIDN'T, but I was not a real part of mom's aging care).

The time you make that promise, it seems like the right thing to do. Often we're already exhausted and depressed and think that this will be easier--and it almost never is.

You and sis need to be on the same page, and sit down and talk about what to do with mom. Lovingly, but firmly.

And follow through. If you feel like sh&t now, and know you will after she dies--cut to the chase and take care of YOU and mom, now, in a better, less stressful setting.

Sounds like she barely able to function now--and she'll get worse, Throw in the dementia and you have a hot mess.

Please take care of you. And don't let the guilt monkeys get to you. My time spent with mother is of MY choice and MY time. If she gets super negative or repetitious or complains too much, I can walk away.

Not so easy for the brother who opted to take her in. He NEVER thought she'd be going strong at 89. And she'll live forever. It has taken such a toll on his family--they are all desperately in need of some kind of therapy to deal with mother's needs and sheer presence in their lives.
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Reply to Midkid58
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I'm new here, came for advice unrelated but your post was 1st I read .... I wanted to give you a big (((HUG))),
You are fatigued , emotionally i'm sure as well as physically, I will pray for strength for you .....hang in there.

I lost my Mom 14 yrs. ago, different disease but very similar situation, she was ill from the time I was 12... I watched as well as cared for her in nearly exact circumstances , although my mother turned to God and found her peace with her faith in him, God doesn't prevent these things, but he WILL help you through them, rest assured.
And I too thought I would look back at the times I wasn't nearly as sympathetic as I should have been and feel regretful, but to be honest, I KNOW I did everything I could, as you are now.

Its ok that you are feeling this way... you are tired UNDERSTANDIBLY !!

I have always looked at things KNOWING there IS a reason,. I don't believe in coincidence, "when" the reason will be revealed is the "unknown", but you will realize what it was ….when its time.

Maybe this separation of emotion, is a needed callous to help you handle "when" mom is no longer in misery.

Remember, you are doing OK … and you are human , this is hard...
Hang in there,
prayers for divine assistance for you and Mom.
((HUGS))
Moni
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Reply to Monimom
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God Bless you. I'm crying just reading this.
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Reply to homealways
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You are not a horrible person. You are burnt out.
Isn't it time to consider a big change - to a facility? It looks like she is unhappy no matter what, but your quality of life could be vastly improved. Obviously, she is very mentally unhealthy. Paranoia, delusions and anger, for any reason, psychiatric or dementia related, are serious conditions. There are facilities that take medicaid patients and that have trained personnel that would care for your mother 247 as well as having programs to engage her. Personally, I think she would be better off in one of those and I know you would. I am not knocking the care you are giving her but, if she has been prescribed meds for dementia, then she must have been diagnosed with it and she will only get worse and beyond your capacity to care for her. You work and you need to keep working for your own good. The time will come when your mother cannot be left alone safely. Please plan ahead for her sake and yours.
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Reply to golden23
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What's the plan for when your mother needs more than a 2x/day check-in from your sister and you?
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Reply to CTTN55
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EmotionallyNumb Jan 15, 2019
She will have to adjust to having a home health aide or will have to go to adult daycare (which she's already refused).
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"... not that bad yet ... more psychiatric related."

I'm having trouble following this train of thought in your reply. So... your mother is, or isn't, receiving any kind of support or treatment for her physical and mental ill health?
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Reply to Countrymouse
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EmotionallyNumb Jan 15, 2019
She has lots of treatment for her physical health, her mental health not so much. She's on a dementia medication but it doesn't seem to be helping. She has chronic pain and has taken opioids to manage it, to my knowledge this could also be contributing to her paranoia, delusions and anger. She sleeps most of the day and might do a little around the house, like take garbage from one room to another or do a few dishes. She can't walk very far and it takes about 10-15 minutes for her to walk 40 steps. She didn't show much progress in physical therapy so doctors stopped it. She doesn't want anyone coming into the home to care for her.
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EmotionallyNumb, do you live with her, or does she live with you? What is her financial situation? Can she afford a facility? Sounds like no, but even if she can't, can she qualify for Medicaid?

Do you work from the home or outside? Who is with her during the hours you are away? I hope you aren't always together 24/7!

How is your own health? Sounds like interrupted sleep is a regular thing for you, and this is very hard on the body.
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Reply to CTTN55
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EmotionallyNumb Jan 14, 2019
She lives with me, she has very limited finances. I work outside the home but I'm able to arrange my schedule to take her to appointments. My sister checks in on her once during the day and I check in on her once.
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You've been "pushing on her legs" for thirty years?

I'm very sorry for any lady who has chronic pain and dementia. Your poor mother.

I hope to make it clear that I don't doubt your mother has real care needs. What I question is what those needs are, exactly; and from there how they might best be met. Has there been, recently or ever, a professional assessment of her physical and mental state?

As a thought exercise: if you could change one thing about your situation, what would it be?
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Reply to Countrymouse
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EmotionallyNumb Jan 14, 2019
She has restless legs syndrome, I remember pushing on her legs since I was 5 or 6 years old. She had an assessment a few months ago but they didn't think she was that bad yet, they thought her paranoia and delusions were more psychiatric related.
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Just because you were manipulated into telling her you would take care of her doesn't obligate you to be a scratching post.

Putting her in a facility that meets her actual needs, not wants and demands and delusions, is caring for her.

You don't deserve to be treated with such disrespect and hatefulness.

You start by getting her a needs assessment and that will tell you what type of facility to look into.

You matter, please get some boundaries in place and enforced until you get her into a facility.
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Reply to Isthisrealyreal
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Thank you for the responses. She is able to walk some, short distances. I don't know exactly how to explain the dynamic. She has times when she is 'out of it' and times when she is somewhat with it. When she is in her right mind, she believes all of the delusions that happened when she was 'out of it'. She thinks someone is outside the house all the time trying to do damage or pick on her. She thinks this person has his whole family in on it. I've told her not to call the call the police anymore because she called them over 15 times last year so now she is trying to get me to call. I told her I don't hear anyone out there and I"m not calling the police when I didn't hear or see anything.

She woke me up three times last week trying to get me to go outside to check. One night I refused and she called me a pile of shit and an asshole. She can't understand 'why i'm being so difficult about this'. I've had to talk to the police when she's called them before and they made a vulnerable adult report because she's called so many times and they haven't found any evidence. This is currently what she's mad about. I just ordered a surveillance camera and told her i'm not discussing this person anymore.

I don't feel hardly anything towards her anymore. The first time she called me an asshole it hurt my feelings, but after that I don't give a shit anymore. If I try agreeing with her about something but don't do it, she gets mad. She thinks I 'have a big head' because I have a good job. I try not to tell her about anything that's important to me because I feel like it will be used against me at some point, as it has been in the past. She told me she felt close to me when I was little but not now.
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Reply to EmotionallyNumb
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Bless you precious one.  You have been there for her for a long time- instead of complaining that no one wants to help her, she should be thanking God for you and the sacrifices you have made and continue to make.  You are emotionally and I imagine physically exhausted.  Is she eligible for home health?  Doctors should be controlling her pain with medication.  Please don't be hard on yourself- you are an amazing person and while all caregivers know what it is to sacrifice, you are a saint among us.  Stand strong and don't give up.  You are loved. 💙
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Reply to dlpandjep
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“I know once she's dead I will look back at this and feel like sh*t”

And......you feel like sh*t now.

This is one heckuva legacy.

From what you’ve written here (and elsewhere), your mother was difficult and emotionally abusive long before the dementia set in.

Are you familiar with the phrase “parentfied child?” If not, start Googling.

Now that real caregiving has set in (not the dumping Mom has put on you for 5 decades - but real caregiving), your triggers are going off left and right.

And rightly so.

At this point in Mom’s lifelong campaign to mold you into her no-boundaries chore minder, proxy spouse and whipping post, you need care more than she does.

What is convenient for your mother is toxic and devastating for you. It’s time to break the cycle.

It’s perfectly OK to switch Mom’s care to hands-off (home help or nursing home) or bring in a palliative team.

The priority is for you to start re-building you. Now.

You are in crisis — and your complicated emotions will outlive Mom (understatement). It is crucial that you get a jump on your own healing now.

((((big hugs)))) You do not deserve this sh*tshow. You never did.

Make the changes you need to make. Find the support you need.

And don’t give one thought to who is miffed at (or confused by) the new you. Your healing, your terms.

It’s OK to take care of yourself. It really is. 🧡
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Reply to BlackHole
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dlpandjep Jan 1, 2019
You sound like someone who's been through it--you give good, sound advice.  I love your last line.  If we could only find (or make) time to do it!
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I think with a Dementia patient every little pain is enormous to them. Not sure if they feel it more or like a child (which they become) they are just dramatic. I would say, Mom needs more care than you can now give. Its time for LTC. Not an AL, they are limited. If Mom has no money but SS, it should be fairly easy to place her.
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Reply to JoAnn29
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You write that Mom has dementia and we always say that when a person suffers from this disease, their brain is “broken”. They lose the ability to reason, they become self-centered (even more so if they always were) and childlike.

It sounds like your days with her are becoming trying and very difficult to handle. This is classic burnout. Even though you sit in the room and ignore her crying, you still hear it, and if you had a blood pressure cuff attached, your bp would be on the rise.

Do you have any help with her at all? Any health aides who come in to give you a break? Family? If not, you realize you are doing the work of 3 shifts of nurses/aides at a facility.

Later this week, after New Year’s, call her doctor. Discuss Pallliative Care, which is different from Hospice. Tell them about these possibly phantom leg pains and that you are weary of being her masseus. Ask about medications available for her depression. “Woe is me” is a common emotion in the elderly. Heck, with a bedridden husband and financial issues, I, myself often wonder why God is punishing me, too. When she moans and kvetches, give a noncommittal nod and change the subject. Promise to write these notes to everyone and then forget about it. Or, if you’re feeling generous, call these friends and tell them to call her if she can carry on a conversation.

Get yourself some help. Insurance will pay for a Home health aide a few times a week. And, there is always Assisted Living or a Skilled Nursing Facility.
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Reply to Ahmijoy
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EmotionallyNumb Jan 14, 2019
I don't really have help with her, no. Part of it is that she won't hardly leave the house and she's only on good terms with one of my siblings. She wanted to rub her back earlier and I said I would if she went to a bible study some time within the next two weeks. She said 'don't push me' and I said 'i don't want to push on your back and you don't want to go to a bible study, this way we both get something', she got mad and blew up about 20 minutes later, yelling about when this thing I ordered for her would get here and about all the things I don't do around the house or being mad when money is tight.
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