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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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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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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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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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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 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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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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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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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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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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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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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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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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