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I guess I don’t expect any answers per se, just don’t have many people with a similar experience to talk to.
My bf (37) and I (32) have been together for almost three years but we dated for almost two years, 10 years ago too. I was always close with his mom. I remember how she used to be. And she’s not all gone yet, but it’s coming and it’s scaring the hell out of me. She (68) was diagnosed with Dementia in late 2018, then re-diagnosed with Lewy Body Disease in summer 2019. BF moved in shortly after first diagnosis, I moved in around second diagnosis. And we had never lived together before all of this, so we’re a couple cohabiting for the first time taking care of his mom.
My original post was too long and I was rambling and just venting. I talk to friends and my mom (her mom had Alzheimer’s for a very long time so I have some experience with how bad it gets) but I know they get sick of hearing about it and worry that it’s taking over our lives, but it is. This is our life now. Taking care of his mom.
We’re still relatively young. But we can’t do any of the things other couples we know do. No one our age has parents with memory disorders or neurological diseases. We’re alone.
his mom has close friends who help sometimes. But no close family. We are alone. I don’t see my friends very much anymore, BF doesn’t ever see friends.
And even when it’s over, if we’re even still young at all, will we have any life left in us to start living our own lives again? Will we even make it through together?
My therapist asked me why I don’t just move out. Well for several reasons. The first being, what kind of person would I be to do that? To leave my BF alone to face this. I couldn’t live with myself. Because moving out at this point would basically end the relationship and I love him and I don’t want to end it. Also, the financial strain it would put on them if I wasn’t helping with rent/bills/food, etc. And the strain it would put on myself too honestly. We’ve had fights where he threatened to kick me out and I really think he hasn’t because of the financial reasons and yes, because he loves me. We’ve gotten a little better. We’re trying harder to be accepting and forgiving and understanding. Another reason to stay is I care about her as well, and I couldn’t turn my back on her. As difficult as it all is, I’m in it for the long haul.
The only thing I can hope for is that it doesn’t stretch on for an agonizingly long time, for her sake and for my BF’s sake, and for mine. I hope we make it out not too scathed and we can have a happy life when it’s all over.

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Ya, but the thing about This Site, and Many More, is , You Do Not Have to Divulge these sites to your LO's... I certainly do not... And with that, I can talk to LO about subjectives if I want to..

This site give me INSIGHT... I do have OPTIONS... I do have CHOICES... I do have THOUGHTS.... they are mine... decipher how you want... DISCARD what you want... TAKE AWAY what you think you need or may need to think about.

THERE IS NO RIGHT OR WRONG ANSWER ON THIS SITE....Unless YOU deem it so..... and if you feel this WHOLE IDEA IS WRONG... you decide if you need to leave this site. But keep reading, absorb and discard willingly...

But always look for CAPTAIN. He has good insight :) He is good. COUNTRYMOUSE and more...:) They are good to read too.... Lots of thoughts... and lots to absorb and think about.

Nobody on this site is completely right or wrong in your mind.. It is up to you to decide what you need to take home.
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After I posted all this, I see your response from another post, you don't want kids, and you don't need a certificate of marriage.. Well, then listen to your mate, hear him out, and walk away before the arguments start. Perhaps he just wants a Sounding board to he can get it off his chest.. I argue too much too sometimes. I am learning and still learning to let him rant a bit.. and then say "Perhaps you are right". I hear you... and I try not to put my 2 cents in, otherwise I am going against him and clearing I do not agree (?). If he feels I am not in agreement then he gets upset because I am going against him... it gets tiresome. So I try to keep quiet.

If you are ok with your situation,... But if you are in doubt, do find an escape route for emergencies, especially if he feels empowered by the idea of kicking your butt to the curb, and thinks you have nowhere to turn, only back to his house n home and his mom.
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My concern for you is that you are sharing your SO with his mother. I wonder if you will tire of it or have serious regrets down the road. My concern for your SO is burnout. It happens more often than people realize. Caregiving is a huge responsibility. It only becomes harder, not easier. Do you have others helping out from time to time so the two of you can spend time with each other?

I admire your commitment to your SO and of course you don’t need a marriage to be committed to one another.

If you don’t want children that is your business. Plenty of couples decide not to have children. You are smart not to have children if you choose not to.

Too many people feel obligated to have children for silly reasons such as to give their parents a grandchild, to carry on a family name, because all of their friends are having kids, or in general because they feel society expects them to have a child. Those are all foolish reasons. The worst reason is they thought it would fix a broken marriage.

Couples shouldn’t have a child to form a bond between them if a marriage or relationship is bad to start out with. That will only make it worse.

So bravo to you for not having a child if you don’t desire a child. That is why birth control exists. There is nothing wrong with a woman who does not have maternal feelings. Some women know their whole life that they don’t desire to have kids. They don’t feel as if they missed out on anything.

Do you feel resentful that you are in this situation? I think a lot of women would and it’s certainly understandable if you do at times. I hope this will not interfere too much in your relationship with your SO. Relationships do take a hit when caregiving responsibilities are involved. Stress is added, anxiety is higher and so forth. My husband and I love each other dearly but we felt the strain when my mom was living with us. It’s natural to feel overwhelmed at times.

Wishing you all the best.
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NO REGRETS... This is your main focus... No regrets.

If you want kids, yes your biological clock is ticking, and finding another mate and convincing that mate to have a child with you...
On that note: I have a friend who went to a sperm bank.. Interestingly,, she went several times to this bank, to look over data, and decide as to whether or not she wanted to go forward.. She had one donor picked out, but was undecided.. When she went back, that donor was no longer "available". If you recall on the news a month or so ago, a man was outraged that he apparently sired over 17 offspring in his city. He told the sperm bank he only wanted a few recipients... Apparently, he was very popular, and the bank, sold more than they should have. And apparently the new DNA companies, 23 n Me, and others,make it easier to find out who the biological parents are.. oops.
So, now back to your issue,,, do you want children? I have many friends who have opted out of having kids.. They are very content and happy with this decision. Me, however, wanted kids.. I have a miracle child. I almost waited too long. We are 40 years apart. Yes, my body had to go through 2 miscarriages before I was able to keep my miracle child.. Kids can be a real pain in the..
If you are uncertain about your relationship, perhaps it is time to have a truth defying conversation, whatever the contents are...You know, bf knows, and you can decipher it and pick it apart when you are ready... Nobody on this forum knows exactly what your feelings are.. I just know that dating someone for 14 years, and the biological clock is deafeningly ticking away, and I cannot run away for the sake that I am in love. To walk away from love is hard. I did not, and I had my miracle of love and science. Because one without the other was impossible for me. As with my friend who chose to be a single mom, had her miracle too :_)
Another dear friend found her miracle at the animal shelter. Her baby is 10 years old now..woof woof..
Embrace life, love, and carry on.. you really don't know what's around the corner.
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NeedHelpWithMom Jan 2020
I have two miracle children! One through adoption and one biological seven years later. Surprise baby! Glad you have your miracle child.
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I hope we make it out not too scathed and we can have a happy life when it’s all over.

LIfe Happens... It is and will always happen. Things happen which we have no control over..

I have a very dear relative, been married over 30 years, 2 grown kids.. And spouse seeing spouse coming down with degenerative bone disease, breaking bones, teeth, health declining.. has moved out and filed divorce papers. These People were married for over 30 years... :(

Never have I ever heard my relative so distraught.... It is heart breaking.

Life happens,,, take your BF mom, and his life into consideration.. If you are content and you feel this is the right thing to do for the long ride... then do it. Know it is YOUR DECISION, not any one elses decision, and ride it out... But know there are no GUARANTEES in life, love, and beyond, so careful... Do you want kids? Does he want kids? IT IS TIME to make YOUR DECISION. It is YOUR BIOLOGICAL CLOCK that is ticking away...Trust me.. I know...
Men can have kids way beyond women... And It is heartbreaking when you come to realize that... I Think That is What You are thinking... Please Correct Me If I Am Wrong.
Most times I ramble on in my own perceptions and thoughts that do not pertain to the original theme of the person's question..
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Song for Badidealeah:

You'll Never Be the Sun
Dolly Parton, Linda Ronstadt, ...

You'll never be the sun turning in the sky
And you won't be the moon above us on a moonlit night
And you won't be the stars in heaven
Although they burn so bright
But even on the deepest ocean
You will be the light
You may not always shine
As you go barefoot over stone
You might be so long together
Or you might walk alone
And you won't find that love comes easy
But that love is always right
So even when the dark clouds gather
You will be the light
And if you lose the part inside
When loves turns round on you
Leaving the past behind
Is knowing you'll do like you always do
Holding you blind, keeping you true
You'll never be the sun turning in the sky
And you won't be the moon above us on a moonlit night
And you won't be the stars in heaven
Although they burn so bright
But even on the deepest ocean
You will be the light.
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Badidealeah, I'm sorry you dislike the recommendations you leave a situation where you have so very little input or control and where many of us believe things are going to get much worse before there is any chance of it getting better. I admire your loyalty to your bf and his mother. But I'm concerned about you. You are 32. If you ever want children in a home and family that includes their father, you don't have many more years to fulfill the dream. The situation with this bf and his mother could easily burn through all those remaining child bearing years. If you know you don't want children, then the situation isn't quiet as bad, but it still has the potential to damage your future, both financially and emotionally. We don't want to see your loving efforts rewarded with a financially strapped and lonely middle and old age.

"Honestly most of the fights could have been avoided if I hadn’t exacerbated them. I’m not perfect. He had every right to threaten kicking me out the way I was pursuing fights."

Do you have any idea how close this language is to the classic statement of a woman in an abusive relationship? How your statements about not discussing placement or financial matters because of his reaction are also characteristics of an abusive relationship? Abuse isn't just fists, it's also verbal and emotional.

Would you please consider getting some in person counseling from a church or a care giving support group or woman's shelter group? Someone's always around on the forum and will usually respond within a couple of hours; we are (at least mostly) supportive even when you don't really like our advice. I personally think we recommend ending relationships and getting out of bad situations more often or more quickly more often than encouraging people to hang in there and work at turning things around. Unfortunately, that's because a lot of our members hung in there thinking they could turn the situation around before the big crash. The forum is one kind of support; venting and bouncing your frustrations off a person sitting across the table is another. Both can be helpful and sometime life saving. Even when the responses are not what we expected or hoped for, sometimes they can be food for thought and let us see our situation from another perspective.

I will be praying your bf is able to find some help for his mother's care to relieve his stress and the financial pressure. I will be praying your relationship survives all the challenges and becomes everything you want and deserve.
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anonymous1007636 Jan 2020
Thanks for your response. I’ve never wanted kids and I don’t believe in marriage. Someone else commented that if after three years he hasn’t committed, then he won’t. Well, we don’t think we have to be married to be committed. We are very committed to one another.
And I understand how it sounds like I could be in an abusive relationship by the context and without actually knowing my full situation, people have decided instead to assume things about me and my BF and his mother. I will agree, it doesn’t sound very rosy.
I am seeing a therapist. I work full time and none of my money goes to her at the insistence of my BF.
Beyond handling myself, everything else is out of my hands. He knows how I feel and appreciates my efforts. Actually he is very loving and supportive of me. But no, when we fight he has no patience and would sooner see me go than have to deal with unnecessary fighting. I have a tendency to argue about little things that don’t matter. That’s not me making excuses for my boyfriend. That’s the truth. And that isn’t to say we don’t fight about things that do matter, but we’re working on our communication and trying instead to discuss rather than fight.
He does understand he can’t do all of this by himself. What’s ridiculous is the way people are assuming that he does. His mother isn’t that far gone yet. She is still in the early stages. He knows in time she will need to go to assisted living. But for now, she will continue to live in her own house with our help. It just gets hard sometimes and it’s stressful and sad and I was just looking for a little reassurance. I doubt that anyone that would post to a website for caregivers immediately placed their LO into a home. There’s a period where you are giving care, before things get to the point of assisted living, and that is the stage we are in. And that is why I made this post. And instead I was criticized and told to leave my situation. So good luck to you all. I’m going to keep trucking.
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Jen,
Your answer is a good one, and from a good perspective, just different.

Unless a poster admits that their own 'similar experience' is similar to Badidealeah (Bad idea Leah) when they were in their 30's, one will never know. Many posters will have strong advice whether or not their experience matches Leah's, and they will not all be in their 30's. It is okay to ignore red flags, but only to your own detriment.

The words stating that if she moves out, that will basically end the relationship
was significant. Whether she fears this, or whether it is true, would be sad.
How those thoughts can make one feel a valued family member, I don't know.

I did not like to answer like I did, but she needs some honest and blunt info if she is to survive, imo. She can make her own decisions. Nothing would make me happier for Leah if she came back to report a good outcome to her liking.

She deserves to be blessed, not only be a blessing. imo.
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I don't like some of these comments cause I feel you are all family and dealing with it, shows you are a great person. It sounds like y'all all work together. That's being a family, and so what if you love them both u will hang. U are probably there blessing.
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Good for u, my bf lives with me and my mom with dementia, and he helps me and he loves me and her. I don't know what I would do without him, cause I haven't got anybody but him. We fuss at times, and I have told him to leave, but I would die. I love him also. He is my blessing. We have put our lives on hold also. But we have to cause she lost her husband last June, and I was the only one to come forward to help, but I am the only one who don't work anymore do to my health. I feel god put me her to be able to help my mom. I have my illness in remission, and I pray to God it stays that way. Two years no problem. I also helped my mom with stepdad for two years he was on hospice, and we lived 50 miles apart during that time, and I would have to leave my bf and go stay for days to help them both. Hard road but gods will we will make it. Loved your story sounds just like mine, and glad u stayed to help your bf
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anonymous1007636 Jan 2020
Thank you Jen. I had originally posted this in hopes of hearing from other people in a similar situation. Thank you for the kind words.
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It is her fault, but she is going to try harder?

"Badidealeah
17 min ago
Oh I know it’s a red flag. Honestly most of the fights could have been avoided if I hadn’t exacerbated them. I’m not perfect. He had every right to threaten kicking me out the way I was pursuing fights.
And he does realize there’s no cure and he’s never getting her back. I don’t know why you’d assume he doesn’t.
Thanks for the advice. I’m sure my relationship is just as doomed as everyone has been telling me."
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anonymous1007636 Jan 2020
Yes, I am trying harder not to cause fights or exacerbate and conflate issues. I have issues with losing my patience. I am working on it.
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I hadn't realized that this is MIL home.That being the case it is quite a different situation. My advice is to move to your own place. If you wish still to see the son, fine. But he needs to decide if the care of his Mom is what he wants to do and can do. You have to decide that as well. I think that it is now your choice to stay or go. You mention dissention. But when advice is given to get out of the situation it comes down to the dissention is mostly your own fault. So I think what is being said here is that this doesn't sound like a good situation, and it sounds as though it will get worse. A relationship is difficult enough. Add a mother into it and it is worse. A mother with dementia? I quite honestly cannot even begin to imagine. So I think you are down now to making your own decision for your own reasons, understanding that it is your choice, and understanding why you are making that choice. Nothing is perfect, but I doubt that any in this situation will thrive over time.
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Jenwide70 Jan 2020
Wby would u tell her that, she sounds like a loving person. She said she loves them both. They help each other
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Leah,
The point is, you are not happy. At the mercy of a boyfriend who can threaten to kick you out. And you say no one has any money, so they need yours?
Red Flags for exploitation. Are you being conned?

You say: "My bf (37) and I (32) have been together for almost three years but we dated for almost two years, 10 years ago too.". You dated ten years ago?
What happened then? Is he working, are you? Do either of you, or both, have a disability?

It appears at this time, you are not fulfilling your career potential (saving for retirement, investing, and contributing towards your own Social Security) if you are not employed full time outside of the home. This is your age-related role in life. So, you are working? Paying rent? You have a therapist, so you have health insurance?

Asking because....
1) I think you are being used. And you are not in a position to know their finances, just what you have been told.
2) You could rent anywhere and still date, yet you say this would end the relationship. Run that error in cognitive thinking past your therapist, see what your therapist tells you.
3) You ask, "what kind of a person would I be?" I understand you want to be a kind, and compassionate person. You are probably that. Leaving would not be abandoning your boyfriend nor his Mom. This may be something you have created in your mind as a strong obligation to stay. As if you are stuck, with no choices. That is also an error in cognitive thinking.
4) You say: " I talk to friends and my mom"; but say they "get sick of hearing about it". You have said: " But no close family. We are alone." Another error in your perspective on your situation. I think this is because your focus is on them, your boyfriend, his Mom, and the relationship.

The truth may be closer to you are not going to leave, so you require a whole lot of support to be able to tolerate what appears to be a miserable life for you.
It is like you want to be a martyr.

Think about what you need to live a fulfilling life. Fantasizing about sending his Mom away to a MC home as a solution to your relationship problems will not work. If the 3 of you NEED everyone's income to live there, and she leaves,
where does that leave you?

You do not need to answer any of my questions, they are there to figure this out on your own. Sorry that you are feeling so very stuck. I understand.

Take a few days apart, your own vacation to think this through.

Good luck.
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Sendhelp Jan 2020
This took me so long to answer, at least 4 posts were added since then.
I often agree with JoAnn, Alva, and Worried.

Hoping Leah has a rental agreement with the Mother. Otherwise, this situation is very tenuous, with no legal legs to stand on when it goes South.
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You know what got my attention

"We’ve had fights where he threatened to kick me out and I really think he hasn’t because of the financial reasons and yes, because he loves me."

To me that is a red flag and sorry, at 32 u should see it.
LBD is, I think, one of the worst of the Dementias. It effects the frontal lobe where ur emotions are located. His Mom could get violent. And believe me they are stronger than u think. And ur BF getting angry because she won't go to a Senior Center...he is already experiencing burnout. You can't argue with someone who has Dementia. You can't reason with them. They have no empathy, they become self-centered. Like a small child. Your BF needs to realize there is no cure and he isn't going to get his Mom back. It "will" get worse.

Stand by him if you feel u need to, but know when its time to go. If u had asked us before you moved in what we thought, we would have told u not to do it. You could have helped from the outside.

Marriages have a hard time surviving caregiving. A relationship where he hasn't committed in 3 yrs may not survive at all.
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anonymous1007636 Jan 2020
Oh I know it’s a red flag. Honestly most of the fights could have been avoided if I hadn’t exacerbated them. I’m not perfect. He had every right to threaten kicking me out the way I was pursuing fights.
And he does realize there’s no cure and he’s never getting her back. I don’t know why you’d assume he doesn’t.
Thanks for the advice. I’m sure my relationship is just as doomed as everyone has been telling me.
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Badideahlea, you have given us more information, and more roadblocks as to the answer that most everyone is giving you. That answer is that MIL (good as) should be moving now into care. This will not get better, nor easier, and the road doesn't lead anywhere good.
You have said you cannot afford care, and in truth, most people cannot. So it is a matter now of her son taking on POA, finding out what MIL has in terms of income and savings, and then going the route of placing her in care. This is not a choice for HER to make. This is your home, his home. So it is your choice/his choice, and a hard one to make, indeed. There will be anger and there will be tears, but you will both need to explain that living together is not an option. Then she will spend down her money in care, liquidating her assets, and then she will apply for Medicaid and you will together seek out the best care available for her. The end of life is about losses. Without adequate savings, it is another loss not to have a lot of choices.
But the one thing that is NOT an answer is staying with the two of you, taking down your relationship, and ultimately ending where she will end in any case, and that is her in care. Difference is that you and your boyfriend will not be together by that point.
In writing this all may sound blithe, as though it will be easy. It will NOT be. Not emotionally for ANY of you. No one wanted any of this to happen.
The feeling you are going to prison? That is common. My own brother has used the word incarceration more than once in that last year or so. That is what it feels like. One could look on it as entering a convent also, but against one's own will. However, living with you two, and the dissention that will result, the lack of care? That isn't an option either. I am so sorry you are having to face this, and it will be a real test of your relationship. The truth is that this may not be the relationship for you. Love isn't often the answer, when it brings up too many questions that cannot have a solution
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worriedinCali Jan 2020
Alva, they are both living in HIS mother’s home. It’s the moms home. OP doesn’t have much say because this isn’t her home, she’s living with her boyfriend in his mother’s home.
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"I hope we make it out not too scathed and we can have a happy life when it’s all over." How realistic are you being? Life is not a fairy tale. You only have control over yourself and your own happiness. You alone cannot make a relationship work.

People who move out of bad situations such as bad relationships, bad living situations or bad jobs have self esteem/self worth. I urge you to talk to your therapist more about moving out. Perhaps you just need reassurance that you are not a bad person if you move out.

You are enabling both your boyfriend and his mother to maintain the delusion that this woman with LBD can live at home. And you are delaying the inevitable. She will only get worse and her care needs will only increase. Her care will become extraordinarily expensive in terms of both money and time.
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anonymous1007636 Jan 2020
“Life is not a fairy tale”. Wow, thanks for that insight. I was just hoping we wouldn’t be completely emotionally destroyed after his mother dies. I guess that’s pretty unrealistic huh?
How am I enabling anyone? I moved into their house? Do you expect me to be able to get her into a care facility and move her out myself?
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If your boyfriends mother has no assets and money as you say, then she should already be receiving government assistance from the state of California. She can also get financial assist to help pay for assisted living/memory care. Has anyone contacted the Orange County dept of social services to see what all she is eligible for? She has early on-set dementia so there is help out there.

and I agree about the expensive vitamins. They need to stop wasting money on them. They aren’t going to fix her & they are a luxury.

your boyfriends mother is only going to get worse. She’s going to require more care and your lives are going to continue to be disrupted.
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anonymous1007636 Jan 2020
She lives off social security. BF was trying to get on IHSS, but he kind of gave up after he realized all the things he had to do to get on it. He might try again. I stopped pressing the matter because it was only causing him to stress and he’d act like I was nagging him. I’m sure there’s a great deal of help out there but I can’t make him do it.
I wish I could but only he can do it you know? It’s very frustrating but I’ve just had to step back and let them do what they’re gonna do. I was going crazy trying to help to the point where we were fighting and he told me basically to kind of back off. That it’s no my problem, not my business. He appreciates the kind of help that entails me being patient, understanding and kind. Making dinner, helping with chores and errands and giving mom her meds on nights he works.
Again, I can’t make them stop her medical treatments. They are set on this doctor. How would I make them stop seeing him and stop his expensive treatments?
No kidding. I know how bad it’s going to get. Pretty much nothing we can do about it. I posted this in hopes of finding compassion and empathy but all I’ve gotten is people telling me to abandon my family and giving me information I’m already aware of and telling me to change things that are beyond my control. Aren’t we all caregivers here? And I’m being told to move out. Sorry I posted at all.
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Badidealeah, I'm glad you gave some additional information about your BF's mother. There are no proven therapies which can stop LBD. I see the expensive vitamins and doctor as luxury items while your rent contributions are required.

What I'm going to say may be painful, but think through it. If you are paying in for rent, and that rent is needed in the budget, then the amount that you paid could just as well be going toward the unproven treatments. So if you moved out, you would not force them out of their home.

What's more is, if you moved out, eventually your BF would realize that he could not continue to take care of his mother by himself. He would then require additional help to take care of her and would be forced to stop allowing someone with the mentality of a child to make decisions that are not in her best interest.

In my opinion, you moving out of the home, though personally painful, would cause the Mother to receive better care in the long run. You sacrificing your comfort, being with your BF, for her best long term care options, is what I'm suggesting.
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lealonnie1 Jan 2020
((((Applauding))))) such a great (and truthful) answer!
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I can't reconcile her being too poor to access memory care of decent quality, but able to insist on expensive vitamin treatments from a stellar specialist. How does that work?

How used this lady to be? Presumably not always unreasonable and entitled or you wouldn't retain such fondness and loyalty towards her.
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anonymous1007636 Jan 2020
To be honest, I have zero say in what her son and close friend (who has been instrumental in getting her treatments and help) decide to do for her in terms of her treatment. I have no say in how her money is spent. BF is pretty lost in all of this and just trying to do what is best for her.
She was, and usually still is, a very kind and generous person. Very laid back and funny. A pretty cool mom. She is still exhibits most of those qualities but if she doesn’t like something or want to do something, she isn’t shy about voicing her opinions. Her sickness has caused her to change obviously.
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Wow, I am grateful for the output.
To start, I guess I should have mentioned that I know how amazing MC homes are. I wish we could put her in one, more than any of you know. We cannot afford to put her in a home. Also, we have tried to get her to attend senior center activities but she refuses to go. We try to get her to do activities that would stimulate her, like coloring and puzzles. She refuses to do anything that would help her. She prefers to watch trashy television. She said the coloring books were too hard. She speaks about the senior center as if it’s for people way older than she is, and way “worse” off than she is. I’m short, she thinks it’s “dorky” and stupid. Her pride is her downfall.
Sometimes a friend will take her out for a walk or to run errands with them or to go to movies, shopping, etc.
She would never willingly go to a home. I’ve heard her mention it as if we would be sending her to jail. She is incredibly stubborn and in denial about her condition and it’s relentless outcome. Her doctor is a specialist and is very expensive. His methods of treatment that I’ve been privy to are a mixture of traditional medicine and vitamins. Very expensive vitamins. Soon they will get some kind of machine to pump the medicine right into her head. More money.
They have no money, no assets, nothing was saved or planned for. She stopped working years ago and has been living off of social security. She has so many bills and debts. We live in a small condo/apartment. There is no privacy.
I thank everyone for their input. But I know how amazing homes are. I only wish we could afford to put her in one. And yes, BF is already exhausted with how much he tries to take care of her and get her to do things that would help her. He was not quick to tell me, but the other day he tried to get her to go to the senior center and she refused and he was positively angry. They argue about it all the time, all the things he tries to do for her that she is unwilling or unable to accept.
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Hazelthebunny Jan 2020
is her doctor actually a doctor though? It wouldn't surprise me if not. It can be hard for a vulnerable person, who has no medical background, to tell the difference between an actual doctor (4 years of medical school plus 3-6 years of specialty training) and someone in an unregulated trade calling themselves a doctor. I find it hard to believe a neurologist would prescribe expensive vitamins the way you are describing: there is little evidence to support this as a necessary therapy for LBD.

the Mayo Clinic has something on this that might interest you - it's free patient/caregiver education materials, here https://www.mayoclinic.org/diseases-conditions/lewy-body-dementia/diagnosis-treatment/drc-20352030

i understand you don't want to meddle in her decisions for what treatment to take. I just link the article in case you were curious what the top hospital for neurology in the US has to say on the topic.

I have no advice for you because I've never been in your shoes, but I wish you well and hope you can take a decision that's right for you.
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Your b/f needs to look into getting his mother placed in a Memory Care home so she can be cared for 24/7 by a full time staff of care givers. To expect you and he to do all the care giving is unrealistic and will not work, long term.

I work in a Memory Care home as a front desk receptionist. When dementia progresses, and it ALWAYS progresses, it reaches a point where 99% of us cannot handle it in the home. After I clocked in this morning, I walked into the resident hallway and noticed a foul odor. There before my eyes was a very large load of feces on the carpet, with water trail leading up to it. I held my breath, side stepped the mess, and hurried into the lobby to open up.

Another time, I was again going to clock in. A woman was pulling an upholstered chair out from the wall; I asked if she needed help; she said No Thank You. I clocked in, and returned down the hall to see her, pants pulled down around her ankles, sitting on the upholstered chair having a bowel movement. I came up front and called a caregiver to go get her, and clean her (and the mess) up. It was taken care of in short order, as was the mess this morning.

Neither one of you will be able to handle your b/f's mother when this is HER norm. Let's face it. Your relationship will suffer and get blown apart in short order.

Be realistic. Look into placement for EVERYONE'S sake, but most of all, for HER sake. In a Memory Care or SNF environment, not only is there 24/7 care but there is an activity schedule, entertainment, 3 meals and 2 snacks a day, in house salon and spa, all sorts of things, not to mention socialization with others in the same situation. Friendships are formed where your MIL can relate to others in the same situation she's in. The isolation factor is removed.

Wishing you the best of luck moving forward.
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I suggest BF contact your local Area Agency on Aging (AAA) and begin a discussion of possibilities for BF's mother, both short term in the home and afterwards in LTC. With dementia, there comes a time where in home care is no longer practical and your BF needs to begin planning for that day. In the short term, community Medicaid may provide some in home respite hours, bathing assistance, and housekeeping. There may be an adult day care program Mom could attend for several hours M-F. In the longer term, many AL/MCs have a policy of accepting Medicaid residents after a period of private pay, usually 2-3 years. If BF's mother owns her house, then selling the house to fund AL/MC may allow her to fund the private pay period. Remember most of her SS can be used to fund the monthly AL fee and then draw down from the house proceeds to meet the remaining expense.

Remind BF caring for his mother at home can also become very isolating for her. Adult day care gives mother an opportunity to socialize with her peers in a safe environment. AL/MCs with other residents to join in meals and activities also provides socialization opportunities and a chance for enjoyable hours in the day. Home care is desirable for emotional and financial reasons in the beginning of an dementia decline, but when the home begins to become an isolation environment, adult day care and AL/MC programs start making more sense.

You are going to find care giving isolates you from your peers. I have lived in the same region all my life, although work required weekly travel for over 20 years. I maintained friendships from church, high school, and college for decades, but when real care giving came into the picture (in my case in my early 40s) the friendships with non-care givers became very superficial. The friendships with others who were also helping or providing care for parents, siblings, or children were strengthened. Contacting people in care giving support groups will help you find some new friends to fill some of those holes you feel now.
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Though the average is about 8 years with Lewy's, your MIL (good as) could live another two decades. I doubt, given where you are now, that you and your boyfriend could survive that together. It doesn't sound to be going well. By the time it is over your relationship would be one more of hatred than of love. There is no marriage contract. Leave now while you are able. I DO understand, esp. in today's world, how entangled it is financially to get your own place and be independent, but that is what life is requiring of you. This will get much much worse. You will be in charge of the care. You will not be able to return to a work environment that pays anything because you will have lost your skills.
Do know that whatever choices you make now, no matter how hard they are, they are YOUR CHOICES.
Very sorry. Without you, your boyfriend will learn very very quickly that he is not capable of doing this. There will then, once he is able to accept his own limitations in care, going to be more or less of a relationship left for him.
I would be very careful and very gentle. Find a way to save to move out, move out, gently, telling him that you are sorry to fail him, but that you are not capable of taking on this care. You are not a Saint. If you were a Saint we could shoot you full of arrows, and then pray to you for all eternity to fix everything that is wrong in the world. Not a great job description, as I always say.
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I know you're only talking about people you know when you say that people your age don't have parents with memory disorders, but all the same. You know that isn't true, right? Early onset dementias affect tens of thousands of people, and many of them have children of your age, or younger. So people your age DO have parents in your BF's mother's situation. You are NOT alone.

Finding them, i.e. a peer group that could at least offer you a sounding board: try researching LBD-related support groups in your area. I'd do that first, and then if it doesn't help we'll have to be more imaginative and cast the net wider.

So. What does mother want? Has she had any opportunity to talk about her prospects and preferences, or has she always been shut down with automatic reassurance? - e.g. "don't worry, we'll look after you, we don't want you to think about it, we won't hear of you giving up, whatever happens we'll get through" - that type of well-intended but inhibiting promise?

The thing about LBD and long-term care. I can think of two examples of this being managed well. Both ladies looking after their husbands: one, our very own wonderful JeanneGibbs, whom you should look up in the Search function; the other a good friend of mine. What they had in common was the recognition that eventually this condition cannot be supported in the family home. The physical care needs of the person become too specialised and demanding for that - just as one small example, we're talking about suctioning airways to prevent aspiration pneumonia.

Your BF isn't going to turn his back on his mother and neither are you. But even if you both face front and give up everything else, you still won't be able to do the job. It's vital to understand that because it will help you focus on the practicalities, and start your research on resources. You're going to need them, whatever decisions you make about your relationship and your future together.
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DItto to what NeedsHelpWithMom expressed. This is an emotionally agonizing situation because you're good people with a conscience. But, wanting something more, something that is healthy and good for someone your age does NOT make you a bad or selfish person. It makes you normal.

Your BF and his mom do have options if your relationship is a priority. She can transition into a care community where she will have others attending to her and your BF and you can visit her as often as you like. She will get proper care and have some socialization. Not sure how far along his mom is in the disease and what her physical and cognitive levels are, but they will surely worsen and the caregiving will become more and more intense. If you choose to leave this situation you are not abandoning them. His mom should have figured out her care without expecting all of it to come from her son and his "free helper". He needs to figure out boundaries. You need to figure out what you want out of life. Even if you were married, this current care situation would be extremely taxing on your relationship and probably destructive.

You need to advocate for yourself and your relationship in this situation, as your BF is obviously not going to do it. He needs to come to the conclusion that he can't continue with what he's doing and expect others to come along for this awful ride. If he makes you feel bad for leaving that says something about him that maybe you should take note of. I wish you wisdom and peace in your heart as you make a decision.
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I am so sorry that all of you are going through this, you, your SO and his mom. This is tough. Obviously, you have a committed relationship and desire a future with him.

Your profile says she lives with you. She is only 68. Life expectancy is a lot longer these days than in the past. You are sacrificing a lot to care for her and as you know, this situation only becomes more difficult as it progresses.

I am glad that you are speaking to a therapist. Has your SO gone to a therapist as well or have either of you joined a caregiver support group? These groups often meet at hospitals, churches and even assisted living facilities. These are helpful because you will hear from others who are caregivers like you. You can do a search online for caregiver support group in your area.

Does she have finances for an assisted living facility? Can you speak to her doctor and a social worker about her future care? Make it clear to them that you hope to one day resume a life with your mate without caregiving.

Is she on Medicare or Medicaid? How much are both of you doing now? Do you have outside help? Do you work outside of the home?

I am glad that you realize caregiving is a huge responsibility, is exhausting and isolating which is not healthy for either of you individually or as a couple. Couples end up feeling a strain on their relationship from the additional stress that is added from caregiving.

I am not criticizing you or judging you. Many go into caregiving not fully realizing how difficult it will end up becoming in their lives.

Yes, it is more complicated when a couple is cohabitating and finances are divided. The same thing happens during a divorce and divorces happen all the time.

It’s true that some couples find it would be too difficult financially to divorce so they choose to live together separately. I had neighbors do this. They each had their own bedrooms. They were no longer living as man and wife. They were essentially roommates. I don’t think you are interested in doing that. They weren’t caregivers. You are caregivers so it’s a different situation. I don’t think that would be a feasible situation for the two of you.

I definitely feel that you and your SO need to have a serious discussion about this. You can’t keep walking around the elephant in the room.

I don’t think you are wrong to walk away if he isn’t willing to make changes so the two of you can become a couple again. That is what you would like. Does he want that too? What exactly has your SO told you? Does he plan on being a caregiver for the rest of her life? You need to know what you are dealing with regarding your future, don’t you think?

Let us know how you are doing. Stick around. Others will have ideas too. Best wishes to you and your SO.
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