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I am a divorced middle aged woman with no children of my own. For my entire adult life I either lived with my ex-husband (15 yrs) or alone. A little over 3 years ago I met the love of my life, the man I want to spend the rest of my life with. I am independent, successful, and financially stable. I own my own home and have just always loved the freedom and independence of my life.
When Covid hit, my partner moved in with me. His 83 year old mother suffers from dementia, and was living in the family home with my partner's teenage children and their mother. About a year and a half ago, my partner made the decision to move back into that house to care for his mother, and I moved in with him. The other members of the family moved out, and this was intended to be a temporary situation until the house we are renovating together is complete.
Fast forward to today and I don't know how much longer I can do this. Without going into all of the details and behaviors that all of the caretakers on this forum are experiencing, I feel like I have gone from being free and independent to being trapped and imprisoned. My home is not my own anymore. Anything of value has to be hidden and locked up, otherwise it will end up either buried in one of her many hiding places in her room, or in some other location that she found while she was "straightening up". I have to hide food and staples like milk, sugar, etc... I have to hide knives and tupperware and silly kitchen things because she takes them. She has left burners on with open flame on the stovetop. She puts dirty dishes in the cabinet, thinking that she has washed them. She feeds random things to our pets. We have cameras all over the house and I've become obsessed watching what she does when no one is watching.
We've talked about moving her into a memory care facility, and he agrees that it is time. However, I feel completely hopeless. So many facilities have waiting lists that are 9-12 months long, and so many others are "not good enough". I don't know what kind of life we are giving her, we certainly don't have the time to watch her all the time, and we can't leave without getting someone to "babysit".
I don't know if I can wait 9 months. I have built a life for myself that I feel is completely gone now. I realize that it was my choice to move in here, but I love this man and I know that he can't do it himself. However, I have gotten to the resentment stage where I can't even look at her without getting angry. I am at a loss as to what to do next. I'm not necessarily looking for answers, but just for someone to tell me that what I'm feeling is valid and that I'm not a horrible person. But daily I ask myself why I did this to myself.
Sorry for the rant. I just needed to get it out.
Thanks for listening...

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We can totally understand the frustration. I don't actually live with my mom, who has dementia, but the craziness has really taken a toll on me. I take turns with my sister & niece going over to mom's. I go every other day and the other 2 take turns. I am SO sick of cleaning up poop, watching her pick her nose, scratch sores until they are infected, scatter kitchen utensils all over, her screaming "I hate you" when it's time for her to shower every 3 or 4 weeks, etc, etc, I am almost to the point where after she is gone, I won't want any reminders of her in my sight for a long time. I recently needed a vase to put some bamboo into, and the only one that would work, reminded me of her. I'm considering taking it to Goodwill and getting a new one. I HATE this dementia crap.
My reason for telling you this... the resentment will only get worse, and she is not your relative that you have ever loved at any time. Don't lose yourself in this cesspool if he won't do anything.
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"When Covid hit, my partner moved in with me. His 83 year old mother suffers from dementia, and was living in the family home with my partner's teenage children and their mother. "

Still scratching my head over this.....your BF's ex was MIL's caregiver while BF lived with you?

What is your BF's financial situation?
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MIL went to live at some point back in time with her son, his children, and the children's mother in the family home.

Come lockdown, and the binary choice forced on many people by it, Son chose to move out and went to live with OP as her partner, leaving MIL on the children's mother's hands.

After 18 months, children's mother and OP's partner agreed that he would move back in and she and the children would move out. OP agreed to go with him to support until their shared house is ready and MIL... whatever. Until they had a plan for MIL.

Um.

Never mind. So.

Are the shared house renovations complete?
What is the plan for the family home once OP and partner move into renovated shared house?

But since this is the AgingCare forum, let's look at MIL and her best interests.
What was the plan for her care following her dementia diagnosis? Was she involved in making it? How has she responded to the various changes in personnel?

There must have been a pretty close bond for children's mother's to have agreed to remain as primary caregiver to MIL for those 18 months. Is she still involved in decision-making now? I would guess yes, but does she agree that MIL now needs the structure and trained staff of a memory care unit? Or even, was she pushing for that with the result that OP's partner decided he would take over?

Then the children: they're too old not to have an opinion, and possibly some input into discussions. Are they making themselves heard?

The reason I'm being so nosy is that I'm wondering what all this says about OP's partner and his expectations/treatment of other people and his priorities, in the context of weighing up the OP's relationship's chances.

But back to MIL: she is not functioning well in a family home and there are tensions arising which must impact on her as well as on the OP. Yet she is the one person who is unable to act and who must be protected: her welfare, because she is so vulnerable, is paramount. And what has OP's partner got to say about that?
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Why was his ex living with his mother? Does anyone else find that odd?
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Debstarr53 Jul 2022
Yes, it sounds odd, but some of my family members have been in some similar odd situations. Whatever floats their boat.
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“So many facilities have waiting lists that are 9-12 months long, and so many others are "not good enough". One option would be to keep her on ‘good’ waiting lists, but move her immediately into a ‘not good enough’ one, and supplement it by frequent visits. One of you going every day may be a pain in the neck, but it’s not as bad as around the clock.

If your man can’t accept this, then you know that mother comes before wife, better to call it quits.
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Yes, agree with Mountaingyrl.

No place is good enough. If it is the list is too long. MIL doesn't want to go (who ever does?) Her son may have guilt at moving her.

Plus, it works right now, right?

Arabica MAKES it work!

To me this is a case similar to 'The Boiling Frog' tale.

MANY family members were caring for MIL with MILD dementia. This has heated up to TWO people caring for MIL with MOD dementia, requiring full care, full assist, full supervision.

Dementia is progressive. The needs just keep increasing.
Changes must be made & extra help becomes necessary.

Arabica, before moving out, start the chats with your partner. Let him know this is how you feel & work together if you can.

Go on to explain this must change - soon. If not, you may need to move out.
Let him think on that.

That would put MIL's care 100% on him - he will be forced to change the plan. Maybe he can hire a fleet of home care aides & services to replace you & they will do ok for a bit longer..

Or maybe it be headspinningly quick how fast he can find a Memory Care or Nursing Home that is both suitable & available!

PS I don't see your need for freedom as 'horrible'. I see it as looking after your needs - as self respect. Also as instigating change to benefit you all.
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AnnReid Jul 2022
The “Boiling Frog” Is SUCH an excellent image for SO MANY of us here!

Thank you for mentioning it!
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Arabica, did your partner help fund the remodel? Is he still doing that? Does he have equity?
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Either you need to move or she does. You say that there is a waiting list or the facilities "aren't good enough". How and who is judging these places to say they won't work? I would stay away from places with only bad reviews or visibly dirty but would keep an open mind to other places.

I have looked at many places for my mother and her current location wasn't the most updated or in the greatest location but the staff are kind and attentive. I never would have picked the place I did based on looks but it has worked out well.

If everywhere open is being turned down, you need to walk away. There is a chance no place will be good enough and when the time comes to move, it could still be considered not right.
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Either you want to spend the rest of your life with this man, or you treasure your independence. Spending the rest of your life together will include stuff like this, including the time that the demented, sickly person is one of you. Spending your life with someone else also means giving up a significant degree of that much-treasured independence.

Your mistake was moving in with him, so move out. No, you aren't a horrible person, but it does indicate that you want a boyfriend, not a commitment. That's fine, of course, but just be honest with both him and yourself that you're looking for something more superficial than a lifetime commitment.
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Sunflowergarden Jul 2022
She could find a new partner and have lifelong commitment with someone who doesn’t have so much baggage.

I do agree that she shouldn’t have moved in with him in the first place. That was a recipe for disaster. Lesson learned though. Caretaking someone you barely know, have no history with (for better or worse) and not get paid for it is a horrible idea. Since that bond with the recipient isn’t there, this most likely will always result in anger and resentment
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Totally valid, and you are not a horrible person.

9 months is long enough to gain 60 pounds (I know this for a fact) but I definitely don’t recommend it.
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If you move out now, then you leave the relationship. Assuming your partner survives the waiting period on his own he won't forgive you, and anyway he probably won't be in any fit state to move on.

On the other hand. If you move out, it might be miraculous how fast facilities do become available and meet the required standards all of a sudden.

It would be a gamble, mind. He still might not forgive you.

What regular help do you and DH have with looking after his mother? Any?
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MargaretMcKen Jul 2022
And if you don’t move out, you’ve accepted misery for an unknown number of years. His and your own love might not survive this, and yes you are going to get fed up.

Perhaps just roll the dice?
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What you’re feeling is valid, you’re no where close to horrible, and in your heart you know it’s time for a change. Living in resentment is no way to live. Move, and move forward, without apology. It may provoke your partner to act, but even if it doesn’t it’s the wise choice. His mother isn’t safe in the home and you shouldn’t be a part of that
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Sunflowergarden Jul 2022
Living in resentment is no way to live! I second this!

louder for the people in the back!
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As someone who has been in this experience, it doesn’t get better and it will only get worse. The anger, hostility, resentment you feel will magnify as it gets worse. My opinion, leave. I wish I did regardless of how much I loved my partner, I love me more. You learn to love you more.

What you’re feeling is normal. You want to build a life with someone and enjoy their time, not be burdened with caregiving. I really need to stress to you that it does not get better, it gets WORSE! Yes, you read that right. It gets a lot worse then it is right now.

On a side note, is she atleast nice? Because if she’s nasty too, RUN!
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No is not a four letter word. Marshall your thoughts, concerns, observations about your situation, write 'em down and have an honest talk with your guy.
Time to say no to all of what you do not have to tolerate or deal with. Say yes to going back to your old life, home and lifestyle. You're lucky, seems like this could be a do-over (that is moving back to your home), and you can chalk up the current mess to a bump in the road of life and be done with it. Though some posters here have supported the idea of working with your boyfriend on this, I dunno, you've not written about how much he does in this situation, perhaps it's a lot. I'd still have boundries stated (as written about below) three months should be enough time to sort this all out and have a good solution for caring for your boyfriend's mother, and not of course by you.
Keep us posted on what happens next! Great advice here too.
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Just let go. You’ve done all you can.
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You are not a horrible person, you appear to be in love with love, he would have already moved her into MC if he really wanted to. There are many homes available, he can continue to come up with excuses if need be.

You own your own home, move back there, you can date him if you like, you do not need to live together.

Even if I met "The Love of my life" I would not live with him, see no reason to. I am an independent woman and I will continue to live my life that way, free from others issues.

Hope that this all works out for you.
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I would. Move out, that is.
Yes, your home and your life as you knew it is gone, and you did that on your own. You also chose to rehab a home you might need to flee back to, so that this isn't possible. In short you have painted yourself into a corner.
Happily the "love of your life" agrees that placement is required. But things won't turn on a dime. You are in agreement. Now work toward making that happen.
Should your partner's Mom need ER any time soon he may consider contacting Social Worker and saying she cannot safely return home. But that quite honestly may not work. This is your MIL's (for all intent and purpose) home.
Happily you did not sell your home. Get it in condition you can move back home and tell your man that is what you are doing. Then DO IT. Move back to your former life. Let him know you will give him what support you can, but living with his Mom is a DEAL BREAKER. Period. End of sentence. Full stop.
Good luck. Hope you'll update us. Without a strong strong POA for your guy and a Mom who is diagnosed with dementia, it is unlikely Mom will be moved from her own home any time soon.
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What you are feeling IS 100% valid and you are NOT a horrible person. We often do things for love without realizing what exactly we're getting ourselves into. You had no idea what dementia looked like, what would be involved in dealing with it, or that the love of your life would be in denial that his mother requires Memory Care NOW but he's not willing to acknowledge it. You and he are in way way WAY over your heads and unqualified to care for her. She's usurping your lives and your b/f is allowing it b/c he's too scared & upset to know WHAT to do. I think that sums up the entire situation in a nutshell.

Dementia is a family disease that wreaks havoc on everyone, not just the elder who's suffering from it. Memory Care ALFs (Assisted Living Facilities = ALFs) have popped up on every corner across the USA it seems. Around here in the Denver metro area, there are no waiting lists to get into one that is self pay. Give your b/f a time frame; say, 3 months, to find a nice acceptable decent Memory Care ALF for mom, and to get her placed. Otherwise, you will have to move on. Because you cannot have your life usurped to THIS degree anymore by a demented elder who's not safe living at home anymore, who's likely to burn the house down any day now, or swallow a bleach & ammonia cocktail and asphyxiate herself.

I suggest you BOTH read this 33 page booklet (a free download) which has THE best information ever about managing dementia and what to expect with an elder who's been diagnosed with it.

Understanding the Dementia Experience, by Jennifer Ghent-Fuller 
https://www.smashwords.com/books/view/210580

Give your b/f a bit of time to place mom, and let him know that you can't wait forever for a solution to this dilemma. You love him dearly, but this situation is untenable now, for ALL of you, mom included. A solution has GOT to be found now.

My mother had moderate dementia when I had to move her into Memory Care from regular Assisted Living. It was necessary. She was not functioning properly in AL and it wasn't right to leave her there floundering. She couldn't live with me b/c I wasn't qualified to manage all of her health and dementia issues either; she required more care than I was willing or able to give her. There is no crime or 'sin' in admitting that. Your b/f will lose YOU and potentially his mother if he doesn't wake up and see that he's in over his head trying to manage her life that is isn't equipped TO manage. Dementia isn't about 'babysitting' it's about a whole lot more than that, as the disease progresses and their needs & behaviors rage out of control. Memory Care is equipped to handle it whereas most of US are NOT.

Wishing you the best of luck getting through to your b/f and getting his mom placed. Fingers crossed that it all works out to everyone's advantage.
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